i feel like i'm going crazy.......but i'm not!

Posted by: Sue22

i feel like i'm going crazy.......but i'm not! - 08/22/10 03:36 AM

ok, this is really hard to describe and if you've never experienced it, you'll have no idea what i am talking about because i didn't until last fall and now again.

last fall i reinjured my rhomboid area of my upper back really badly. and again this week, not quite as bad yet this time but fighting that really hard.

here's the thing. i've had worse pain in other areas like the SI joint, pain that has made me scream. this pain doesn't make me scream, but it gives me "physical panic attacks" for lack of a better word. very hard to explain. my head is fine, my mind is fine. almost like my head and my body are disconnected and i'm a third person observer. but when this upper back pain hits, even just a little, my heart starts beating really hard, not fast, just hard, and my stomach starts doing flip flops, all the kinds of physical sensations that one would get if one were very nervous like in a panic attack, but with none of the mental parts of it. and if i can get the pain to subside, then the sensations go away. the worst part is these symptoms are what are waking me up from sleeping. and i'm developing gastritis while i sleep, though last year taking mylanta right before bed did help prevent it from getting as bad as it could be, though it did cause very bad GI issues, wasn't digesting my food, dropped almost 10 lbs in less than a month. but really its the "panic" sensation that makes me feel like running away, makes me feel like i just can't take it, makes me feel like i'm going crazy.

ok, if these sensations sound familiar to you, can you explain what is happening? and more importantly, i need to know what can stop these feelings, because even if i'm not going crazy right now, a repeat of last year just might send me off the deep end.

have a nice day. rainbow
Posted by: Anonymous

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 04:12 AM

I would think its your central nervous system reacting to pain. Its like when you get bad joint pain your muscles all tense up to try and protect the area of pain.If the pain is in your upper spine area then your head will react to the pain. I get very dizzy and my muscles all tighten in my skull and neck area and even my vision goes blurred.Your stomach will be affected because of your sense of balance almost like vertigo.

Posted by: Gerri

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 06:27 AM

Hi Sue

"The Rhomboid muscles are often overlooked, but they are frequently a location of Trigger Points. The Rhomboids are very thin muscles which have the tremendous responsibility for much of the movement and support of the shoulder blades. Due to the enormous amount the shoulder blades are used daily, the Rhomboids are often overworked and over tired, leading to chronic Trigger Points".

I get pain often, on the upper right side of shoulder down my spine and only occasionally on my left side.

It is very painful, and seems to take my breath away. When I have upper back pain, sometimes I associate this pain to be part pleurisy. Other times the pain goes further down my shoulder down my spine, to the center of the back. I have much GERDs, and GI issues, which causes breathing issues.

I don't know if these 3 things are related. As these pains are familiar now, I seem to role with the punches.

Just a thought, GERDs related (upper GI - leaky gut problems) - try cutting out all sugar, see if that helps. I also have put the head of my bed up about 4 inches. Also I stuff pillows behind my back, in front of my stomach, and between my legs. These help stop the constant moving. I am finding it helps with the cough, associated with GERDs. Still have pain in center upper back though, think this is AS related.

Any panic attack I may have from this, is what I believe to be the result of oxygen depreviation.

Posted by: rumble

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 11:50 AM

Don't think I have any solutions, but wanted to tell you that I hope you get better and don't have one of those spells like last fall.
Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 02:06 PM

To help me with anxiety IBS and other stuff I use tapping


In fact i do this daily, and usually when i am feeling calmer. This has reduced my nervousness when i have flares and it has helped me cope with flares a lot better too

Love joanne
Posted by: avonldy

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 02:33 PM

Have you seen your doctor? If not, see one!
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 02:58 PM

hi donna,

yes, that's usually my response to anyone as well. last fall i saw all my doctors, went to PT twice a week for ultrasound, went to my physiatrists for trigger point injections even past the point of there being any to inject, begged my GP to help me, got an emergency appointment with my rhuematologist, tried acupuncture and the only three things that helped were the ultrasound, staying out of the dam car, and the IF stim machine that insurance rejected as "experimental", so after 3 months of nobody helping me, i bought a home ultrasound unit and stayed out of the [*bleep*] car. but i had to be out of work for 6 months and i really don't want to repeat that. this is not an easy problem to solve, with that, i'm still going to try again, this time go to the new GP and see if an orthopedic surgeon will treat this like (s)he would a torn rotator cuff, or something; need a new approach because none of the doctors last year could do a [*bleep*] thing for me.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 03:01 PM

hi joanne,

this is most definitely not anxiety. it is pain and the pain is causing the other symptoms, like when burn victims end up with gastritis and die from bleeding ulcers, its like that, only not quite to that degree. trying to understand why severe pain does this and then if anything can be done other than treating the pain, so i am trying best i can to treat the pain, but if there is some other drug that turns off this physical response that would be great too.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 03:05 PM

thanks rumble! thanks for thinking of me. heart
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 03:09 PM

hi gerri, you are right about those trigger points, back in the late 90s, early 2000s, i had a lot of triggerpoint treatment, so last fall i thought that's all i needed, but the physiatrists told me there were really no triggerpoints to inject, still we injected a few places anyway, but no, i think i tore something back in 98, it partially healed with all those triggerpoints but this time i tore it again, that's what it feels like. i so wish the triggerpoint injections could be the solution this time, as the first time they were nothing short of miraculous! still the ultrasound helps some, regardless of the cause.

as for the GERD, i don't have that, but do have chronic gastritis that is usually under control, until the pain levels get too high, then the pain causes the gastritis. i just wish i knew how to block this other than taking mylanta before bed, maybe i just need to start doing that again?
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 03:11 PM

thanks kevin,

i do think you are right, somehow the pain is affecting my CNS. i just wish i knew how to make it stop.

the only thing i know to do right now is to try to get rid of the pain, so that's what i am doing, though easier during the day then when i lay down to sleep, that is the real challenge, as so many here know.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 03:14 PM

seems i am not alone in these sensations, though only the second to the last post really offers any ideas:


this is a little more of what i am talking about:


Posted by: inkyfingers

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 05:05 PM

It could be a disturbance of the sympathetic chain in your upper thoracic spine - you can get all sorts of weird and often seemingly dissociated visceral sensations when the sympathetic NS is disturbed - and the symp chain runs lateral to the thoracic spine under the rhomboids...
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 05:24 PM

thanks louise, that makes sense to me.

i guess the next question is, is there anyway to stop this neural pathway? maybe a neurologist would be able to do some sort of nerve block or something?

as i've said, i've had worse pain, but that pain like the SI joint is "just pain", but this even when its fairly low level really is messing with the rest of my body.

i'll go do some googling with these new terms.

but was wondering if you (or anyone else) know what kind of doctor would be able to deal with this sort of thing?

last year two physiatrists (including one in a pain center), a rheumatologist, a GP, an endocrinologist, a PT, a chiro, and an acupuncturist were all stumped as to what to do for me. though at least when i talked about it being like what happens to burn patient (the gastritis part at least) (good thing i knew about that) at least they understood and took it as the real physical problem that it was. and at least one of the physiatrists did acknowledge that pain can cause the physical sensations of panic attacks even if that's not what is happening, acknowledged the gastritis and heart pounding sensations, but no suggestions other than "give it time, it takes time for things to heal."
Posted by: manatee

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 05:34 PM

Hi Sue, Have you tried any muscle relaxer's like Soma? I do get similar symptoms and not as much anymore since starting Soma and Trazadone every night. Just a thought
I do hope you find answers soon
Posted by: Donette

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 05:37 PM

I recently learned "tapping" too. It helps with pain and all sorts of other stuff. I don't know why but it does. It feels cleansing, like pathways are opened up and the bad comes out. Weird, I know. But effective, nonetheless.

I'm 5 pages into my trigger point workbook. (thank you) If I come across anything I think could help, I'll yell. You've probably already exhausted all of these avenues though.

Good luck Sue. Praying you don't have another bad Fall.

Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 06:05 PM

Hi Donnette

It was when my hubby had his brain heamorhage that i found out about it. He cannot take pain killers and because his nervous system is all messed up, any pai at all triggers his system. It is a terrible thing to see he shakes and screams, and even cries. It can be terrifying for me.

Nothing like this happened to him before he had his heamorage, he was such a calm and stable person

Anyway, I went from therapist to therapist trying to find something that would help him, and then one day a very kind old lady that had been working with children suffering from war related PTSD told me about the tapping

She suggested I try it out for myself and then pass it on to him. I was so desparate I would try anything, but i really did not think it would work, it looked stupid

Anyway, I did it over a few days, like i was learning it for an exam or something and to my amazement my own nervous system calmed down

I felt so much more relaxed. then a few days later I was told my dad had Parkinsons and my neice had diabetes and several other traumatic things occured. Normally all this stuff would have sent me over the edge and triggered a flare.

I did feel the initial rumbling, but some how I managed to stop the flare irrupting. that is when i realised that the tappig was working for me. It does not stop every flare, but i I do do it regular it certainly eases the intensity of them

Anyway, when i saw my dad he was tremblig too. His nervous system was shot with the parkinsons. I taught him the tapping and now he uses it for his parkinsons shakes. His doctor is very suprised that he is still on such a low dose of L-Dopa. He tells his doctor it is the diet and the tapping and a few other things i have shown him but as usual his doctor will not listen

My hubby still gets night terrors now and then but nowhere near as bad as he used to. He uses the tappig both to calm his nervous system and for pain. He uses ketosis for pain too

I have had to learn a lot of pain management techiques because none of us are any good with medication. I am the worst. I am terribly intolerant of pain killers and other medication too. my hubbyy is not as bad as me, but i do worry, because the medication they give to folk that have heamorhages can be very addictive. and i worry about my dad too. that L-Dopa normally only lasts five years and then they can end up in real trouble. thi is why i spend so much time caring for him. Indeed with us all being so very ill this is why i spend so much time researching.

But it is good. It is really heart warming when you find something natural like the tapping. Somethig anybody can do. recently I went to a seminar about it and a therapist said this could mean the end of a lot of medications, but I could tell he was not glad, he was sad, must have thought he might loose his ob or something

Anyway, only time will tell. It is very simple, and anybody can do it, even children, but some folk just won't stick with it. I guess things nowadays are always presented as sophisticated, perhaps it looks daft. but it has not been daft for me, it really has been a life saver. All three of us are on considerably less medication than we would have been without it

Love Joanne

Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 06:44 PM

i do take my zanaflex at night before i go to bed and that does help, and sometimes i'll take another when i wake up 5 hours later, but right now thinking its probably better to just get up as the laying is hurting me. but yes, muscle relaxer does help, thanks!
Posted by: EricaK

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 06:48 PM

Ooouuuch! heart hugss heart hugss heart
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 06:49 PM

thanks donette heart

i tried the tapping thing, you are right, it was surprisingly soothing. also deep breathing helps a lot. that's what i do when i wake up in pain. it may not help the pain, but it helps my stomach and the pounding in my heart.

i so wanted the problem to be triggerpoints last year. my one physiatrist gave me her lunch hour and injected any little thing that seemed like it might be a triggerpoint, but that's when we realized its more than just that. but some did get activated in my head from all the muscles in the area spasming as they went into protect mode and injecting my head helped a lot. it sounds like it would hurt, but it didn't, and it helped, go figure!
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 06:54 PM

thanks joanne, that was really helpful. thanks for sharing such intimate aspects of your life heart

i think i will try this some more........

that and just simple deep breathing........i find deep breathing like i learned in yoga class to be useful.

do you have any other techniques that you could share?
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 06:59 PM

thanks erika! heart

hubby and i just took a walk and discussed what i could do on my own to see if i can keep it from snowballing.

i think i will cut my flector patch in half and keep half on my SI and put the other half on my rhomboid area where it is most tender.

if this doesn't work over the next 2 days, or if my SI gets worse with only half the dose it is used to, i'm thinking about pulling out the prednisone that i've never taken before but was able to convince the rheumy to give me for emergency situations (such as this).......my only misgiving is the fear that it could really screw up my already sensitive stomach, but maybe i am being overly fearful? its the short course step down prednisone. but think i'll give the flector patch a try first, i know i respond well to that, just wish i could use more than one on my body, one for the SI and one for the upper back, but the packaging clearly says not to.
Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 08:02 PM

Hi Sue

This may be more of a Fibromyalgia thing than an AS thing, I really do not know. but when i am under a lot of pressure, and especially when i have over exhurted myself I find my nervous system switches on and I cannot switch it off

It is like I have gone into red alert and everything around me becomes very intense. noise, smells light can all overwhem my system and whe this happens it is like a switch has been switched on. a flare will start and the pain will be excruscianting, where i am bucklig over holdig my stomach, but dreading even more what i know is coming next the volcano from my sacrioliac joint that is going to have everything burning, shaking, twisting, gripping. and knowing it is coming and i will not be able to stop it, sets me up for major fear, and believe it or not shame, because I feel so bad about myself that I have no control over any of it

Or at least this is how i used to be, before I cut all the starch and sugar out of my diet

Oce I had managed to get that lot out of the way, there was still so many other things i needed to look at, I hated smoking, and the thing with the chocolate, well i could not work out if that triggered flares or relieved them, but regardless i kow i was messed up with it I was eating several bars a day. and then their was diet coke, that I supped like i was a wee baby. I kept goig back to the doctors and tellig them all this pai it is sending me mental, they would basically tell me it was me being mental that was causig all the pain

what do you do with that. what do you do when you know you have something very seriously wrong with you physically and all folk can do is tell you it is all i your head

Anyway, at least i worked out the diey, not 100% but almost. and although i did make the mistake of eating the cocoa and the ryvetta etc, at least most of the time my starch intake was low

I do know that me learnig how to get off all the stuff i was addicted to helped a lot. the withdrawel was horrendous, but with the aid of ketosis I did manage to lookse my desire for all that junk and as i did so, I did begin to see I am a OK person

the pain carried on for a whle, because i had ot mastered it then. I would fast and eat well for a while but eventually i binged, and on and on the craziness went. But more recently I have begun to be able to control my eating, mainly i think because i started eating all natural, and also because i used the Paul MCKenna

Paul, and a very good therapist that i had, helped me to see that despite what the world had to say, I am an OK person. I do deserve a good life and I do deserve to be looked after.

Nobody around me could or would take care of me and the effort to try to get folk to see how much care I did need, frankly just turned to further abuse. My hubby, hobbles and could hardly speak right, but he was the only person i the world that did genuinely care about my welfare

He has always been very supportive of my diet and he has always supprted my wacky self healing ways

All day I have music like this on


I know it drives him nuts but it soothes my nervous system

Our nervous system in in our brains but it is also very much in our neck and spine and a big part of it is in the sacriolic joints. When our backs are not right and other parts of us are also not right because of it, the nervous system, I think, becomes enflamed. its not easy for us to relax it. All our muscles around the spie are working really hard to hold us together, they have had to take on so much of the work our own spines would be doing if they were healthy. And the damage that does occur to the spine also, i feel, affects the neuron transmission from the brain to the body and visa versa

This is why I think my nervous system becomes overloaded. My physical structure is not in alignment, and parts of me are doing work that in ormal cercumstances they would not be.

the on top there is all the every day demands of life, which in all honesty, are not normal nowadays. All of me struggles sometimes, but honestly, to have any chance at all I really have had to commit to a warm spiritual loving life for myself. where in a sentence, I pamper myself, with beautiful things like the music, nature, art, dancig and so on. I have had to lear to be young, very youg at heart. i often do not feel like it, I ofte want to be all grow up and angry, but that gets me nowhere, and nothing (apart from starch of course) can trigger a flare more easily that me being all flustered and sad

So, even thought i have no idea how me and my hubby will survive the next six months, let alone the rest of our lives, i just have to prance about sticking silly bows on plant pots and making strawberry trifle for my (grown up) children and hubby LOL. I just have to seek out a comedy or an inspirational film with an happy ending. Because the truth is, although my illess is bad and it has progressed, I am still here alive and kicking, and i really do have so much to offer my iner self if I just keep focused on how lovigly lovely I am inside and stop worrying about the rest. which if i am honest never is worth the air time i give it

A lovely Epson Salt bath relieves my pain, and a gentle walk i the park with the dog. Prancig about helps too LOL, no it does, just me getting my silly little girl head on and singing la lal la and watering a few flowers, can help me release some of the heavy load the world gives me, which in turn releases some of the agoy I add on myself to the pai, simply because i am desparate.

I hate the fact that doctors ever believe anything I say, but I canot let it get me down, because when it gets me down i isolate. ad when i isolate, i go i on myself and my pai becomes my focus, instead of my precious life that i want to share with myself and make myself feel hopeful inside. All that focusing o the pai does is make me feel down and dishearted

Don't get me wrong, some nights I just cannot switch off even with my music, my tappig, my baths etc. some nights I am like a raging nutcase. but when he pain does get to 10 out of 10 I just have to say, and this too will pass, and it does, eventually

k Sue for letting me share, it is helping me get things in perspective

Love Joanne

Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 10:15 PM

those are some really lovely thoughts heart

i'm sure they will help many who read them,
just reading them is soothing rainbow

and that music, sounds just like the music the korean acupuncturist i went to would play. i really wish acupuncture had been the key for me at that time, the atmosphere that he created was lovely, maybe in the future when my body isn't quite so sensitive.

more later........
Posted by: Jewelz

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 10:49 PM

Sue you could have a compressed nerve in there that's causing all kinds of weird stuff. Like the other poster mentioned with the sympathetic nervous system.

I hope you can get it calmed down. I'm sorry you are suffering with this so.... Stay out of the #$%$ car! *wink*

Get better soon!
Posted by: EricaK

Re: i feel like i'm going crazy.......but i'm not! - 08/22/10 11:06 PM

Oh, Sue! About six months ago when I had the first hip/flank/shoulder/eye pain flare, I felt like I was going to die from fright every time it reared it's ugly head. Heart palpitations, sweating, cramps. These periods of craziness did make me become very aggressive in obtaining adequate pain relief and eventually led to my diagnosis. Not sure if this is what you're feeling, but whatever it is, it sounds like NO FUN! Does it help to take something to calm you down when it happens? I'm so sorry you have to deal with this. hugss
Posted by: Dow

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 12:02 AM

Looks like you picked the wrong week to quit sniffing glue! smokin

okay, slightly more seriously

agree with the others that wonder if you really are having a chronic "fight or flight" adrenaline or other glandular type response. When you say it makes you want to run away, that sure sounds exactly what that adrenaline boost is designed to do, give you a sudden energy to you run from an attacking rhinoceros! Even if it means that it quickly depletes other less critical resources, at least you would be able to hide behind a rock and heal!

So something in your system is going "ALERT! ALERT!" for long periods of time, whether it really needs to or not. Why the brain isn't experiencing panic at the same time is certainly an interesting question...
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 01:44 AM

thanks jewelz heart

right at the moment it is calm, i cut a flector patch in half and put 1/2 over my SI (where the spine meets the pelvis) and 1/2 over the left rhomboid area, and i just spent the last hour or two with ice on both areas, sitting in the recliner. so for the moment, the pain is very low and thus the body is relatively "quiet"......but in a little bit, i will need to go to bed, that's usually where the fun begins. hoping by sleeping on ice i can minimize the damage that laying does to it, and get it to heal up.

i did tonight call my research student and explain how if i stay home for the next two weeks before school starts, i might have a chance of healing it up. take two weeks off now, or potentially have to take another 6 months of leave like last year, though this year it would have to be official. we both decided, it could wait two weeks. while there are no guarantees that this will do it, i gotta give it the best odds i can. she is such a sweetheart, she understood completely heart
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 01:49 AM

thanks erika, no idea if its the same sensations, but it sounds like you understand, even if your sensations were the same or different.

i am wondering if while going through this some kind of drug that calms one down could calm my body down? something i need to ask a doctor. in the meantime, things like deep breathing do help a tiny bit, but really the only thing that helps is minimizing the pain. but i will ask about a drug or something. i do wonder if my body is overreacting to the pain, or if its a normal response? when i first hurt it, i had a lot more pain, but these sensations are relatively new, last fall was the first time in the 12 years i've been dealing that i've felt this way. they do say that long term pain does things to a person including new studies showing brain changes in response to long term pain. but hoping that book dow was talking about might give me some insight on how to turn it around, if in fact that is what is happening.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 01:55 AM


humor always good! thank you! yes

i wonder if the body really is going through a panic attack but since i know its in response to the pain if that is why my mind is saying, "that's really odd." instead of joining in with "alert! alert!" but you are correct, that is EXACTLY what the body says to the pain, and IMO, overly so, for the amount of pain i think it is, i think my body is overreacting.

discussing it with my husband tonight, wondering if the worse muscle spasm pain that results from a very inflamed SI doesn't cause the same response because its intermittent extreme pain, only if one moves, otherwise its lower level. vs this which when its on, is a constant pain signal? or maybe its just its location and there are certain nerves there (sympathetic nervous system) that are being impinged?

the doctors weren't very successful with all of this last time, so will go to the new GP and see if maybe a neurologist or orthopedist or some different kind of doctor who "thinks differently" can be more helpful.
Posted by: Dow

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 02:50 AM

Try thinking of it as a big loop, with the original trigger event as the beginning, sent to the brain, the brain reacts by getting concerned and nervous, and sends messages BACK to the body, increasing muscle tension, inflammation, higher heart rate, etc, which means MORE messages are going to the brain...
Posted by: Geos

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 05:05 AM

OK, I know excactly what you mean.
It is one hell of a feeling. For me, I could say that it reaches the sence of extinction. My heart beats so loud in my head that i think that it has been relocated in my mouth.
I've had this kind of crisis 3 times from last summer and i don't know what is causing it but it happens when I am exhausted or in great pain in the thorasic part of the spine.
The doctors describe it as panic attack and it seems that it is combined with great doses of vertigo.
It feels that the central nervous system is involved.
The crisis lasts for a couple of horrible hours in my case. The only thing i can do to overcome it, is take one or two tranquilizer pills, lay down, cross my hands over my chest and take deep breaths until it wears off.

Pure horror...
I wish not Sue not anyone experience this feeling again.
Posted by: Donette

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 09:57 AM


I JUST REALISED WHEN I HAVE FELT THIS. It was when my blood pressure spiked dangerously high from prednisone. It is the only time my bp has ever been high. It felt like I was being crushed all the way around my chest/back and my heartbeat was like a bass drum in my head.

Have you checked your bp lately?

-hugs. Donette
Posted by: Johninco

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 10:25 AM

Sue, have you had your doctors look at your c-spine on MRI? My c-spine is all messed up from multiple previous traumas, and it fused down toward the bottom. My whole left shoulder area hurts pretty often as a result. Muscularly it tends to refer through the neck musles, causing me severe headaches.

I know I'm in danger of getting a rep as an herbal nutjob, but have you tried large doses of valerian? That's what usually relaxes those muscle groups and breaks the nasty cycle for me, because it's a superb, non-addictive muscle relaxant with few side effects for most folks aside from mild sedation, and that might aid in shutting down your anxiety, which may be a significant part of your cycle. (Anger can set mine off and exacerbate it.)

Not prescribing, of cours, just suggesting. If you try it ley me know how it works for you...

Posted by: protrainer

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 11:13 AM


I'm a little late to the discussion and see my thoughts (yoga, deep breathing, mediation, acupuncture and so on) have already been suggested.
It sounds horrible, indeed.
The cause and effect suggestions offered here sound legit too..I'm no scientist, but many logical explanations are offered.
I sure hope there is relief in your near future.

Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 11:56 AM

hi Sue

right now whilst you are not feeling great this might be abit too much, but when you are feeling better youmight want to look at this. There are quite a few other blogs relating to this one and I remember that it rally helped me get to grips with the Alpha Beta GABA Wave thing. And has helped me o end to quieten my nervous system. I now sleep through most nights and even when is severe pain much less likely to have an attack of the nervous system


Love Joanne
Posted by: stevec

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 07:02 PM

Interesting. I am and have been going through sort of the same thing. Actually am going tommorow for an endoscopy due to gastric woes occurring and have lost a precious 8 pounds from my already too gaunt frame.

Initially not so much from the pain but I am so fused and tight in the neck and shoulders its just a constant throb. It got me to go to heart doc because of the pounding heart felt throughout my body so loudly and the feeling you describe of being out of your body. I would say that I feel hollow within myself.

SO far only things that has helped was pool exercise and floating weightless on my back. I take styrofoam barbells to make myself buoyant and float 15-30 monutes on my back twice a week at least. That and using the same barbells to stretch my arms has offered some relief so far in the short term.

Again cause and effect are speculative and I have made some dietary change at same time but the pool things seems to work. Warm pool works much better for me and lucky for me the local gym has heated therapeutic and cooler lap pool
Posted by: WendyR

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 07:28 PM

Sorry to hear that, Steve. However, can I offer you some of my very generous prednisone pounds? I've got a few to spare right now (I am not at all gaunt) that I'm trying to give away. I could send them by Canada Post if you're interested... No charge...
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 11:35 PM

don't know? it sure doesn't feel that way, but i'm open to trying various techniques. deep breathing, meditation, and other forms of relaxation, which i'm very good at, do quiet my mind, but really to this point have done nothing for the pain. only physical methods seem to touch the pain. plus, a lot of it is while i'm asleep at night, still i'm open to the possibility, even if i'm not sold yet. i guess we have to experience something ourselves before we are convinced.

with that said, the flector patch over the rhomboid area seems to be helping quite a bit. that plus laying on ice while i sleep.

but i did wake after 3 hours and my neck was killing me, since i have to lay differently for my back which isn't so good for my neck. so i rubbed KIP gel on it, took another muscle relaxant, changed the flector patches, and slept another 3-4 hours, and when i did, my neck was much better, so am also a firm believer in the KIP gel as well.

i just might beat this thing.......if only i didn't have to start classes in 2 weeks, but it seems like i'm getting control over the situation. fingers crossed, toes too.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 11:39 PM

i do think its the same thing!

for me its that horrible pain in the thoracic area of the back. mine lasts a little past when i can get that pain down a notch or two, mostly its been by standing up since sitting uses that torn tendon or muscle and using ice on it. or getting out of bed and doing focussed deep breathing, since laying on it also causes it. but of course that means i can't sit or lay.

and yes, when i read the physical symptoms of a panic attack, those are the physical sensations i am getting. there must be some nerve thing in that area as louise and others described.

i'm hoping i don't need drugs for this, but if i do, may i ask what tranquilizer you take, i could ask the doctor about those.

Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 11:47 PM

hi donette,

BP a good thing to mention, but no, that's ok.

when i started waking up like that, the first thing i did was check my pulse. nope, that was fine. then i checked my BP, we have a monitor at home. nope, that was fine too. so my heart isn't racing, and my BP isn't going up, rather my heart is pounding like when one is nervous or scared, even if i'm not. its the oddest sensation.

i go to so many doctors, i think my BP is checked like every month, at the doctors its either normal or borderline high, seems to fluctuate so much there, but here its always low or normal. and i've taken the monitor in to the doctors to do a comparison there, so we know our monitor is good.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/23/10 11:58 PM

last year when this was so bad, the doctors and i really thought it was soft tissue in the rhomboid area, but just to make sure it wasn't spinal, i did have an MRI of my C-spine and T-spine. i do have some disc damage in both regions, interestingly exactly where it hurts at times, but we all agreed that the severe pain really wasn't coming from those locations, though they cause issues of their own.

they did have me try lyrica as well in case any of my pain was nerve related, but that did nothing for the pain, all it did was give me a splitting migraine, all day every day til i went off it, then phew! headache gone.

and don't worry about the suggesting of herbs. i'm always shouting the praises of the things i've found helpful. i mean we suffer for so long sometimes and then when we find something that helps, we just want to shout it from the roof tops! want everyone to experience what we have, even if it might not work for everyone, we're just so excited, we can't help ourselves.

so, with that said. i like herbs. ginger and peppermint are a big part of my stomach therapy. yes, i take prilosec at night before bed, and occasionally mylanta as needed, but ginger and mint are really helpful for gastritis (and i can do mint because i don't have reflux).

as for the valerian. i have valerian root tea in my cupboard. the stuff tastes nasty! very medicinal tasting, but mixed with mint and honey, its not so bad. i do take it when i feel like i need it. i first bought it when i was having serious gastritis issues. didn't realize how powerful it would be, thought it would be more like chamomile, which i find very mild. went to the herb store, came home, made myself a cup of tea in the middle of the afternoon, then proceeded to zonk out in the recliner for three hours straight. so i use it when i need it. i agree, its a nice natural sedative.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 12:00 AM

thanks tracey,

its so nice to see so many people who understand! with a title like i put down, i really set myself up for some great jokes, but everyone has been so thoughtful heart

when we are in so much pain and feel so all alone with it, it is so nice to come here and not feel so all alone with it. hugss
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 12:04 AM

actually just last night, i found your links to these things in another post, so i clicked on them and listened.

oddly, i found the alpha waves very irritating and could feel my heart going faster. then i tried the theta waves and they were much more soothing. so then i remembered liking the sounds of the tibetan singing bowls i had seen in a store a few weeks back so searched those on youtube and listened for awhile. then decided to buy a meditation album (Tibetan Chakra Meditations) with those singing bowl sounds that i like so much.

so now i am nice and relaxed........and in pain! LOL! but at least i'm relaxed!

thanks so much for introducing me to these things heart
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 12:12 AM

thanks steve, the pool's not an option for me right now, but walking does give me relief. just can't walk 20 miles to work, LOL! and kinda have to sit for my job. told my husband if i just didn't have to sit and lay (wish i could sleep standing up like a horse) i'd be ok. so yes, exercise does help.

sorry to hear that you've had similar symptoms. let me know if the doctors suggest anything new to you.

as for the stomach, for what its worth, good or bad, i have a lot of experience controlling gastritis, 90% of the time i win. even last fall when things went terribly downhill painwise, and even stomach and bowel wise, i was able to prevent an ulcer through taking my priloec, taking mylanta at bedtime and if i woke in the early morning, eating right before bed (thankfully i don't have reflux/GERD), and using psyllium. but i too lost almost 10 lbs in a month when things were really bad, i wasn't digesting my food properly. whenever my gastritis flares, my small intestine flares as well. but i got it under control.

hope you don't have an ulcer, just a bit of gastritis, that too can be very painful, but a lot less serious.

but i do find when the stomach is brought back around, the bowels follow along without any treatment other than healing the stomach.

good luck to you, and let me know what the doctors have to say.
Posted by: Geos

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 01:07 AM

OK now,
the tranquilizer pills are called "valmane" and they are an extract of valerian. As john said valerian is a natural herb so no prescription needed.
For the vertigo thing i also take "Vertigo-Vomex" and "Antivom".These meds seem to help quite a lot when things go bad. Please ask your doctor if he can find the substances so that you can find the meds provided in your area probably with different names.
For the long-run i use a B1+B6+B12 vitamin complex which is supposed to help the nerves recover after a trauma.

Hope that helps.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 01:39 AM

thanks so much!

i see that you are from greece. not sure if we can get valerian in capsules here, but i make a mean cup of valerian root tea! it smells so medicinal that my hubby won't come near me when i drink it, but i haven't had it for some time. i will try that. i don't know if its as strong as the pills, but it does knock me out, so it must be pretty strong.

or maybe they do sell pills here in the U.S.

i don't have any vertigo with it, thank goodness, that sounds awful.

the vitamin pills never did much for me except upset my tummy. but i'm really good with my diet. and i eat total cereal every day.

thans so so much for getting back to me!

PS oops! looks like i can get valerian root in pill form. thanks!
Posted by: Dow

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 03:43 AM

I think my point is getting lost in the sauce here

stating it as simply as possible:

the mind is part of the equation, it is an essential part of the LOOP, there literally is no pain without the brain's involvement
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 04:07 AM

not disagreeing with that, just not seeing that my mind is causing more pain, but rather than debating it, i'll wait to read the book, try the techniques, reserve final judgement til then.
Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 05:29 AM

a lot of folk tell me my illness is in my mind, I say no its not in my mind, but it is in my nervous system

My mind is fine. In fact looking at a lot of other folk I would say my mind is perfect LOL

No seriously, my mind is perfectly sane, yep i mess up, get muddles thinking, anxiety, even depression sometimes but none of this is causing my illness. My illness is physical. It is physical if i have been diagnosed or not

But, and I know this for a fact, my nervous system is hyper alert

I have lived with a debilitating condition for 20 years. This illness has dictated every moment of my life, where i can work, who i can live with, what i can eat, how i will sleep, on and on this list goes

This illness is more demanding than a crying baby, is there any wonder i get worn out, both physically and mentally

And with all the clap trap i get told by doctors is there any wonder I get nervous, even crazy sometimes

but i am not crazy. what it is is all my body is affected by this illness and my nervous system is no exception.

Like the rest of me there are so many times my nervous system has to work hard. It has so much to cope with, roudy people, noisy tv, flashing lights, fast pace people, weather changes, etc. Trying to cope with every day demands when your pelvis feels like it is caving in is too much for my nervous system, it is too much for anybodies nervous system

Anyway, what I have learned is this, I am me, illness, misdiagnosis and all, it is all part of me and I have to live with it. At first this used to send me mental. why should i have to live with this, I would yell, but no matter how much I lost my temper, I still had it all

anyway, as the years have passed I have learned how to quieten my life. I have learned how to make my life with all its crippling pain, other peoples cruelty, lack of money, accusations of being mental, I have learned to create a spiritual life, simply just for me.

I have surrounded myself with nature, music, art ,comedy, films with happy endings, good food ,good company and so on.

Now even though i still have my illness and even though my illness is progressing I feel better than ever have and my nervous system, God bless it, is finally responding normally

even when the pain feels like i am giving birth, my nervous system can stay calm. It is hard to say exactly how I have achieved this, I will as I think of things share more, but basically my nervous system feels loved, and reassured so even when some kind of stimuli, even pain triggers it, some how it is not firing up like it used to, and I no longer have to experience the feelings of dread and helplessness like i used to do

Now, this did not come over night, and there are days when i come close, especially when there are crazy folk about telling me my illness is all in my head. Straight up, nobody can trigger my nervous syatem like these folk can. But even these folk are loosing their grip on me

I can see now that there are folk that are on my side and there are folk that are not. These folk may sound like they are saying the same thing but they are not. It took me a while to spot the difference, but now i see. If somebody is or has suffered on the level i have and they speak in a loving tone to me and they say something like, I can help you, it is with sincerety that i speak, i realise that these are not using phsychological babble to put me down but really are able to teach me something new

I now love and care for myself in such a gentle way, the same way as when folk care for young children, I now do not need any medication. this is after years of taking God knows what, and my illness was not as advanced as it is now

We all have as much right to health and vitality as anybody else

All my love Joanne
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 06:07 AM

thanks for those beautiful thoughts.

i am glad you have found ways to quiet your nervous system. i think i understand. mine was on hyper alert last fall, i think that's why i couldn't tolerate the acupuncture. then after 3 months i started to get better, and then after 6 months i was back to my normal "i can live with this and function" sort of pain on most days, with milder flares along the way. i can see if one is constantly in as much pain as i was last fall, and where it seemed i was going this week, how everything would go on high alert, how could it not.

it sounds like you have worked very hard to take care of you. you should be very proud of your accomplishments and phooey on what others think! i just block them out and say "la la la, i can't hear you!" LOL!

but seriously, like you, i have found a way to surround myself with goodness, calmness: i have a loving husband, a silly bird, wonderful friends and family, nice research students, a beautiful yard with a beautiful garden created by my husband, live in an area full of wildlife and nature, go out and take walks and photos, listen to music, watch comedies and funny movies, read good books, cook, oh how i love to cook, all those things. and i try as best i can to stay away from the toxic people, working makes it trickier, but i just try to steer clear of the people around which i do not like how i act.
Posted by: avonldy

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 11:43 AM

I was taking some Valerian capsules for insomnia last year. I think that you could find them in a health food store. I ran out and my insomnia improved so I stopped buying it.
Posted by: Johninco

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 12:06 PM

Hi, Sue...

Good news! You CAN purchase valerian in the US in capsules. Walmart has it for cheap. For me that's much more tolerable than having to smell the stuff raw.

I get this cycle of strong negative emotions--tight muscles in neck and upper back-- AS inflammation can never avoid a party like that and joins in-- cluster migraines due to vascular bed insufficiency at 0300 hrs, which causes--

It may take a couple nights, but slugging my muscles and my anxiety into submission with very, very high doses of valerian an hour before bedtime usually breaks the cycle by forcing the muscles to relax. If that doesn't do it I'll add kava, California poppy, passionflower, hops and chamomile into the mix, which ALWAYS works. Make sure you can get nine hours of uninterrupted sleep, though. But even a combo like that can't hurt you unless you're allergic.

I studied herbal and indigenous medicines down to the pharmacological level and without witch doctor mumbo jumbo because I spent a good deal of time far from Western medicine. I'm glad I did. And I'm glad to share what I've learned while making sure I point out I'm suggesting, not prescribing.

I hope the cycle you're in breaks for you soon!

Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 11:01 PM

thanks donna!

yes, with some googling, i saw that a brand of supplements i've bought in the past even makes it. i have a good natural foods store i buy these sorts of things, debating if i would prefer to go with the tea or try a pill, even the tea knocks me out. wonder if the pill would make me sleep for 100 years! i'll talk to the people who work in the supplements section, see if they can advise the strength of the pills vs tea.

thanks again,
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/24/10 11:07 PM

thanks john for all the good advice!

i think i'll start off slowly, things affect me very easily, that's both good (a little herb or drug goes a long way) and bad (a little drug causes side effects readily).

i think i'll just start with valerian. i think you're concoction might put me into a coma! LOL!

but really the big thing is, i'll try during the day. i like my muscle relaxant at bed time. don't know if the herbs would work as well and not sure i want to change something that works. and mixing the two could be dangerous for me because the muscle relaxant lowers my BP as low as 80/55 at times.

but i don't take the muscle relaxant during the day very often because it makes me so tired for that hour or so that my BP drops, so maybe valerian would be a gentler daytime thing to try.

thanks to all who suggested the valerian!

thinking some more, think next time i go to our natural foods store, i'll buy some more valerian root tea and a bottle of valerian capsules and see which i like better.

thanks all!

and BTW, just 2 days now of wearing the flector patch and more and more convinced i just might beat this thing this time, but don't want to jinx it, so i'll be quiet now!
Posted by: Dow

Re: i feel like i'm going crazy.......but i'm not! - 08/25/10 01:06 AM

Originally Posted By: joannesford
even when the pain feels like i am giving birth, my nervous system can stay calm. It is hard to say exactly how I have achieved this, I will as I think of things share more, but basically my nervous system feels loved, and reassured so even when some kind of stimuli, even pain triggers it, some how it is not firing up like it used to, and I no longer have to experience the feelings of dread and helplessness like i used to do

Great post, Joanne, thank you so much for putting that out there! You are definitely on to something! hugss
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/25/10 03:39 AM

doing a lot of reading about the Autonomic nervous system including the Parasympathetic nervous system and the Sympathetic nervous system, jumping off from louise's suggestion of the sympathetic nervous system involvement.

wikipedia says the following:

The autonomic nervous system (ANS or visceral nervous system) is the part of the peripheral nervous system that acts as a control system functioning largely below the level of consciousness, and controls visceral functions.[1] The ANS affects heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, micturition (urination), and sexual arousal. Whereas most of its actions are involuntary, some, such as breathing, work in tandem with the conscious mind.

so though i used the clumsy phrase "like a physical panic attack" for lack of the proper terminology, i think that was the wrong phrase to use because i think it gives the wrong connotation; conjuring up images of anxiety, nervousness, fear. and really that's not it at all, not even close.

but as i read about the autonomic nervous system, i feel like that's exactly what is being triggered: an increase in heart activity and blood flow, an increase in stomach and intestinal activity, and a change in body temperature and sweating.


also have been reading about nerve blocks in that region and thinking this might be something to talk to a doctor about.



its so good to have people to brain storm with. not having the proper words to search, could never have found this information, so thank you. don't have all the answers, but do feel like i'm getting closer to what is going on.

it sounds like its a completely below the conscious mind sort of thing, which may explain why deep breathing, relaxing, meditating doesn't really seem to change things, and only using a topical antiinflammatory (ice, patch, gel) seems to help. though my next task is to see how much control we can have over the autonomic nervous system, thinking about biofeedback.
Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/25/10 04:20 AM


You are right with the phrase, 'physical panic attacks', my husband never experienced any problems with his nervous system until he had his brain heamorhage, and my dad, although his problems are different, his nervous system is very messed up now he has Parkinsons

For years, I have been told, by doctors that they can tell there is nothing physical wrong with me, just by looking at me, because the symptoms i describe a psychsomatic. I let them get away with this, and suffered many years because of it

My physio has told me now, that my sacriotic joint is inflammed and could be out of place. I have one leg 2cm longer than the other. she is also concerned because my spine is not entirely straight, at the base, and my shoulders lean forward, in a parcular way. I also get neck pain which she has not really looked into yet, and I have severe joint pain, severe IBS and so on. All of this I have been told for 20 years has been caused by my way of thinking and my emotional feebleness.

Luckily for me, a few years back I met a few other folk that had also been given wrong diasgnosises like me, and they had, usng many techniques managed to work on the different aspects of their body, mind, nervous sytem, stomach, bowel, heart, inner self, diet, emotions and so on and i have learned many techniques now, so that all my layers of self can work together fairly harmoniously

But i do need a diagnosis. I need a proper diagnosis because there are things i can do about this if this is AS, and instead on continually searching for 'what is wrong with me' i can focus my healing on the AS. But, you know what, I do not believe the general medical model for illnesses. Illnesses are far more alike than we think, and their causes are far more alike than we are told

Anyway, I do not have time to go into all this right now because I am working, but I will share more another time.

I think you are doing the right thing, reading up on the nervous system, and you are very very right when you say, it is a physical thing, triggered by the pain. I think there are many more people that have panic attacks because they are poorly, rather than it be just a nervous thing, but honestly, very few doctors will accept this, that is until it happens to them

Incidently, my dad was always one of them, oh its all in your head, not any more it seems !!!!........................good job i know how to love him anyway, LOL

thanks for your shares Sue, they really are helpful

Love Joanne
Posted by: Dow

Re: i feel like i'm going crazy.......but i'm not! - 08/25/10 05:29 AM

I know it's horrible when people say it's ALL in your head yes

and they are wrong, you know it isn't true no

But consider that all pain is experienced IN the brain, it is where all the signals from the rest of the body are processed, right?

So our brains, being imperfect, can amplify, increase, decrease, misplace, confuse those signals, and if we are worried and upset about what the pain might mean, that we are going to miss work, or worse, that's not going to help the accuracy of the reporting any is it?

here are two pages that I scanned from the Explain Pain book:


Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/25/10 09:37 AM

Now this here Dow is, I think, the same or similar to what I have learned. Because I could not get any help with my illness and because my husband was ill I had to leave my job, which I loved and I was very good at, and we lost our home I was devasted, and very bitter

I was in severe pain, I had not lowered my carb intake at that time, and I just could not cope with anything. My flares were cycling, almost daily, mainly because i was still eating starch, but i was in such a mess I could not see anything I could or should do to help myself get right

I could not sleep. All night i was in agonising pain, and then in the morning I was as stiff as a board, joint pain here joint pain there joint pain everywhere. And my IBS and hormones where really badly messed up. It was a nightmare.

I struggled and struggled trying to get me and my severely disabled husband and two children, fed clothed and a roof over our heads. I hobbled for here to there, often falling, could and all kinds of other painful things going on, it was a nightmare

And then one day I met a person who had been through many of the same things I had, not AS or Fibromyalgia, but misdiagnosis, caring responsibilities, no money etc.

He said to me, you must sleep, stay in bed and sleep, for a few days. He said take water and food to bed with you and sleep. Only get out of bed to go to the loo, and sleep all the rest of the time

I said, are you kidding I cannot sleep the pain is too bad, I do not have the time, I need to get some money etc. Sleep, he said sleep. So i did

Took me over a week of messing around but eventually i fell asleep, and eventually i fell into a deep sleep, something i had not done for many years. When i finally got up a few days later I could not believe the difference in my body. I was stiff still, but i felt like i had been on my holidays

I phoned my friend and told him, he said right, now it is time to start eliminating the foods you have problems with

I new i could not eat pasta, bread, cereal, rice, etc, so he suggested the Atkins diet to me. I went on that and boy did I feel better and i told my friend. He said right, now it is time to tackle your addictions. I said, oh no I cannot stop smoking and I have to have diet coke and bla bla bla. No, he said, you do not need any of it, it is all aggrevating your pain, and he was right. It took me two years in all and i managed to get off it all, but when i did my pain level of daily pain decreased

whilst all this was goig on I learned how to do gentle enjoyable excercise and to my amazement my pain reduced further. I started to spend more time with this man and others that had suffered similar problems, some cancer, some mental illness, some disbaility etc. These folk had all at one time had professional jobs just like i had had, but they had decided to give up the rat race and focus on getting well, and some of them beyond all odds, had got very well indeed

This is when i decided to take up the gardening. And as my muscles strengthened and my body learned to bend and turn more normally again, hey presto, less pain again

Then i started to bring in the music and the yoga and the dancing and the singing, and lots and lots of other fun things to do. And my pain lowered even further

Now sometimes when i explain this to folk they do use this therapy against me saying it proves it was all in my head at the start, these people are usually doctors. But i have used these same ideas, and similar stuff with my dad and my husband, both who clearly do not have neurosis. There illnesses are accepted by the medical profession as physical. Yet both my husband and my dad are doing magnificantly well, despite there serious disabilities

You see it is not that there is or was ever anything wrong with them as people, or how they think, but society, doctors, other people, the media, ourselves, family etc, can so very easily railroad us down the road of disability and pain

I believe we have to start loving our illness to get well. I do not mean loving being ill. What i mean is the illness makes us into somebody we would not have been if we did not have it, and this in itself can set us up for a very paiful existance, emotionally and physically. What we rarely do is appreciate the fact that without the illness we may well of not turn out as wonderfual as we actually are

folk that have illnesses like this grow spiritually, they become strong people, people that can support others and give a lot to the world. Often people that do not suffer cannot give kindness like we do. Not all, I do know people that do not suffer much and are delightful, but not many, most of the folk that have helped me have suffered a lot through life, and I look at them with such fondness, because they are very special people

My friend has taught me to see this goodness in myself and he taught me to believe this is what my illness is all about. He taught me to care about me, in a way that makes me very special to me. He said love yourself tenderly, and love your illness tenderly, and then you will see yourself start getting well, and I am so fortuate, but this is what is happening.

Well i have learned to love me in a special way, and i have learned to love my illness with the same compassion, and I love my fellow suffers in the same way

My last hurdle is the maniacs at the hospital. these are the folk that can so easily have me tippling from my path and ending up all clenched up my muscles and hurting like i used to. These are the folk i have trouble loving gently, as I know really would be best for me.

But, now that i have the information that i have from this site, Carols Book and a few other things, I do actually feel more confident, and I do feel like tomorrow when i attend the hospital, I will be able to express myself in a more amiable way than i usually do. My focus today has been on loving these folk kindly and not judging them on the poor performance of the other doctors i have seen and this is working for me today, at least.

I am not all tense, like I normally would be before an appointment. I am not obsessing about it either. and my pain is just as low as it has been all week. In other words my nervous system is not being tomented with worry, so it is not intensifying my experience of the pain

Instead because I am sending good signals to my body that all is well, and my Ketosis is creating GABA in my brain, my nervous system is actually working the other way around and soothing my pain

There is obviously a lot more to this than i am expaining here, but pain moves through the body in many stages before it hits the brain and we feel it, and the signal from our brain also moves in stages before we feel it.

The more the body is in rythem, especailly with nature, natural food, contentful living, the more we ourselves tune into the rythems of the nervous system and the more we learn how to gently control it so that we can feel pain without trauma and soothe pain without as many painkillers

This form of healing takes time to get a grip of, and time to work. Not because it is hard, but because in Western society good health is not really encourages, and most of us have never been shown natural healing techniques. In Eastern societies, illness is always treated in a loving compasionate way, like the ways i share, but in the West many of these ideas are seen as hocus pocus, and often if you do get involved with them folk accuse you of definately being batty, well that is what i have experienced, anyway

But, day by day, I am learning. There are far more folk doing this stuff that I once imagined. And each person on my journey can give me just another tiny morsall i the jigsaw of life

I can honestly say I would not wish this illness on my worst enemy, even my husband says, what i have is much worse than what he has, and much worse than what any of the folk in the family have. But this illness has been the making of me. It has brought so much goodness to me, I really cannot tell you how much goodness it has given me. It has helped me create a beautiful relationship with myself, and with each passing day, it gives me a spiritual awareness, that I would not have if I was pain free

When i listen to other peoples shares here, I get that same warm feeling in my heart. There are so many people here who are clearly beautiful on the inside. And I know that when i recieve my diagnosis, so many of you are going to be able to help me further. Now I am here I have real faith, that things are going to continue to go well for me, and may even get better.

I cannot and will not return to the crazy Western style life i had where it was all work work busy busy shop shop bang bang. I want peace inside me and having a tender life and mixing with folk like you lot here on this site has brought a very warming kind of peace to me

My love and sencere appreciation to you all

love Joanne
Posted by: Dow

Re: i feel like i'm going crazy.......but i'm not! - 08/25/10 01:25 PM

Beautiful, Joanne, it is wonderful to talk to our new friend about such things, and hear your story! hug

When I return home later, after 6 hours of recording boxing punches and fight sounds for a TV show, will want to continue this!

Talk about "crazy Western" "work work busy busy shop shop bang bang" ha ha!
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/25/10 03:54 PM

thank you for sharing that.

maybe one of the biggest challenges is to still experience those things but not "step out of" society to do so, but to find a way to go through it, surrounded by the "noisy" people, managing a career with many needs, especially the needs of others. and then there are people in the world that must deal with poverty, infectious disease, starvation, war, how do those people "maintain a sense of serenity"?

i could quit my job and have my husband work, and he agreed to do that if i had to go on disability; we had that very serious conversation last year. however, i want him to be able to do his gardening and painting, i don't want him to have to sit in front of a computer, that is not good for his back and neck, or soul, he doesn't enjoy it.

i on the other hand, love being a professor: i like teaching others, mentoring others, and research is like play to me: the saying "they pay me to do this?!" comes to mind. but, it is busy, it does involve catering to the needs of many.

when my back got really bad last fall because i sat in the car too long, then used those same muscles to hold the phone in one position for too long (now that that same muscle or tendon is torn, i can feel, just like with the rotator cuff, that raising my arm up over my head from the side makes it worse), i had to stop going in (i was on sabbatical just doing research, so i could tell a white lie and stay home and instruct my research students via the phone (i bought a headset) or email) and only went in when i absolutely had to.

after 3 months of going to PT and doctors, realizing that all the PT was doing was ultrasound which i could do at home if i bought a home machine, which i did, and the doctors, some trying, some not, were not helping me at all, so after 3 months, i quit them all, including the acupuncture, and just stayed home and took care of me, for another 3 months. others urged me to go to doctors, continue on that quest, and i said "no, not now, i must heal first." and they didn't understand how going to the doctors to seek out a diagnosis and healing were incompatible, but i think you can from the way you write.

when i flare, i do temporarily stop and take care of me even better than normal, maybe its why in between my flares i am not so terrible, unless i tear a tendon or ligament, then i have bigger problems to tend to.

but not every one can quit their job or even want to quit their job. and yes, if we have to, we have to: last year when we talked, it was clear we'd have to sell our home and move into a much smaller place with no land, land that gives us much joy. but you do what you have to do.

however, i'd rather find a way to do all the things you describe, and still be able to give back to the world using the gifts i was given. science and math came easy to me and i always wanted to do medical research to give back to society. once i trained in science, learning how to do research, it wasn't until i got my first faculty position that i realized an even more meaningful aspect to my job is the teaching and especially mentoring of young people. it would be a shame for all involved if i had to stop doing this which i love and which i think i'm very good at. and having something to be so focussed on definitely takes the focus off of my pain.

so, most of us must find a way to do as you described without stepping away from society. when i'm home alone with my husband, my bird, our beautiful garden, and all the nature and wildlife that surrounds our home, with all the time in the world to take a walk, take a bikeride, sleep as much as the pain allows, do all the things that are relaxing, it is easy. the challenge is to still be able to do these things while we maintain our jobs. or find a way of remaining calm while driving 20 miles on a sheet of ice to get home from work in the winter while sliding all over the road.

so, its a matter of balance. balancing our careers, the people in our life, our health needs, etc.

thanks for sharing. i'm so glad you were able to do this for yourself. i think there are a lot of good ideas there.
Posted by: joannesford

Re: i feel like i'm going crazy.......but i'm not! - 08/26/10 09:05 AM

Oh no Sue, do not leave your job, I would never have left mine had I not had to. Oh no, that is not what i mean. Looking back on my post I can see that could be how it sounded, but really I do not think anybody should leave their job just because i did. And believe me I did not go gleefully I was furious!!!

I think more what i am saying is that although i know my pain is amplified by my over active nervous system, the fact that my nervous system is over reative is not to do with my state of mind (although it is today, because today i am feeling bonkers, but thats another story LOL) the point i am making is that is we are not careful we can sometimes easily allow crazy stuff in on our lives when we do not need to and this in turn can overwhelm our nervous system

Years ago I had no skills, no skills at all for dealing with stress. And because i had no idea why i was so poorly and because, as you know this illness in itself can be so stressful I got in a real muddle. the muddle in my life became bigger and bigger, and the burden of this muddle antagonised my nervous system and could well have played a big part in my illness developing as it did.

I had no skills, and i carried a lot of resentment and shame because i was ill and nobody would help me and on and on that story goes. but I was lucky because eventually i did find some good folk that helped me, and it is the same here, there are even more folk helping me once again here

I think what i am often thinking, when i hear folks stories that they are going through the same torment with misdiagnosis that I often go through. And that I also percieve folk are being down trodden like i was so sometimes i offer my information, and perhaps this is not what is being asked for

I do not think people have to be suffering to the extent that I was, and sometimes still am, to take advantage of the stuff I have learned, but perhaps sometimes i do not explain clearly enough what i mean

I have read several of your posts and they have been very helpful for me and I feel that you are a very spiritual person, and I guess that is why i chose you to share with. Rather than me thinking that you should leave work or indeed do anything I say, I actually feel it is your shares that are helping me

I guess there could have been some confusion in the communication because i was sharing my experience, but to be honest rather than sharing it, I have all along been more interested in listening what you have to say. Your shares are very comforting and inspirational, and I have got more out of them than I have from many other sites that i have been to

I really do not think you realise just what a good writer you are and the positive impact your shares do have on newcomers. They certainly help me. Believe me Sue, I am not trying to impose my way on you, rather it is the other way around I am trying to absorb some of your success. I already new before I shared with you, from reading your previous posts, that you are clearly a very balanced person, and indeed this is what attracted me to sharing with youi the first place

My respect and love to you

Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/26/10 09:41 AM

hello again,

i think i might have miscommunicated here. i knew you weren't suggesting to quit working. i was just saying that we should still do all that you are doing, even if we are working, but at the same time, its more of a challenge to fit it all in, but, its important.

and thank you for your kind words, but you too are an inspiration, not just to me, but i can tell from others' comments, to others as well. i am enjoying so much talking with you! heart

i can also tell that you have found a lot of things that have helped you so much, and you want to share these with others, to help others out. i know how enthusiastic i get when i finally find something that helps, i want to shout it from the mountain top. i think it is wonderful how much people here want to share what works for them, in hopes that it might help others. that's one of the really nice things about this place. yes
Posted by: emmab1973

Re: i feel like i'm going crazy.......but i'm not! - 08/27/10 11:44 AM

Hi Sue,

Sorry to hear you are suffering so much frown I have suffered from panic attacks for years, so know what you are going through. Panic can be brought on by a lot of things, in my case it is stress, but pain can also bring it on.

Have you tried doing Yoga? It is very good for relaxing the body, and may also help with your AS symptoms. Deep breathing is another option. When I get really bad, I need valium to releive the symptoms, but this can't be used too often; luckily I only need valium about twice a year, and for a couple of days only.

Please mention this to your doctor, I am sure he can advise you on things you can do to releive the symptoms smile There are also a lot of websites out there offering advice on how to cope with panic attacks, they may be of help to you. At the end of the day you need to get rid of the pain, but I know this is easier said than done! Can you get an appointment with a pain management expert? Sure they will be able to advise you.

All the best!
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/27/10 04:08 PM

thanks emma,

last year i tried to explain this to several doctors, including my physiatrist in the pain center (a pain management expert). when i asked what to do about it, all i got was a "yeh, pain can do that to a person." at least my suspicions were acknowledged instead of them treating me like a crazy person, but no suggestions on how to break the cycle.

deep breathing, imagery, and meditation do keep my conscious mind calm while this is all going on, so not a panic attack in the classic sense. though i wonder if the drugs that help classic panic attacks could help here, something to investigate. just wish the doctors had been able to say, "yes! i know exactly what you are talking about! and this is what you can do to ease it!" you'd think pain doctors would be more familiar with this and know how to address it. maybe i just need a better pain doctor?

ultimately i had to find physical methods to alleviate the pain. so far, that's the only thing that has worked on the physical symptoms though the other calming techniques at least keep my conscious mind calm.

what i really want to be able to do is to find a way to affect the subconscious or unconscious mind and the sympathetic and parasympathetic nervous systems because that's what seems to go into hyper mode. hoping i'll get some perspective by reading the "explain pain" book dow told us about recently.
Posted by: emmab1973

Re: i feel like i'm going crazy.......but i'm not! - 08/30/10 02:40 PM

Hey Sue,

Know what you mean about Dr's responses to panic/anxiety attacks! Two Dr's I saw refused to believe I had panic attacks, because I had chronic diarreah (according to them this is not a symptom; I hate to disagree as I don't have a medical degree, but having researched the subject, it is a symptom!), and they also refused to give me vallium, even though I only wanted 2 days worth of tablets, and very rarely have to take them frown

My other issue was that my panic attacks lasted days, rather than minutes (the classic panic attack). I think this is because I learnt to control my breathing so I didn't hyperventilate, but my stomach completly shuts down when this happens, so severe nausea, diarreah, and impossible to eat. It's part of the bodies fight or flight syndrome; in the stone ages, if an animal was looking at you as food, the fact you are throwing up and defecating puts them off!

One Dr prescibed me beta blockers, which slowed down my heart rate and lowered my blood pressure. This actually helps a lot in the early stages, and may be something your Dr would be happy to prescribe? Could be worth you noting your heart rate and blood pressure when this happens, so you have a record to show the doctor? If you haven't got one, blood pressure monitors are relatively cheap to buy these days, and are as accurate as your Dr's. As I think I said before, when it is bad, vallium is the only thing that will "cure" it, and usually two to three days low dosage (2-5mg) is enough. I've done all the "mental" cure bit, as in coming to terms with what is upsetting me, and realising it is just a physical response, but my body just doesn't seem to listen to my brain! Most panic attack experts say you have to do the worse case scenario bit, i.e what's the worst that could happen if my fears come true, and realise it's not that bad, but once you're body is in charge rather than your brain, it's a vicious cycle to break frown In your case, as it is pain rather than stress that causes this, it is even harder.

Many Dr's also don't appreciate how bad panic attacks can be, and think mind over matter is the cure. For some people, this can work, but for a lot of us it doesn't. You really need to find a Dr that is sympathetic about this, and is happy to prescribe vallium in small doses. Not easy, but can be done!

I really feel for you, know exactly what you are going through, and how horrible it is. A lot of people think you are weak if you let stuff like this bother you, they don't realise it is a pyshical response rather than a mental response. Unfortunately you have no control over how your body reacts to stuff frown If you were allergic to a food and had this response, they'd understand!

In your case, I don't think the classic pychiatrist would be able to help; you don't have an unfounded fear, it is a response to the pain you are in. You are not crazy, your body just can't cope with what it's going through, and this is it's response.

I really hope you can find a sympathetic Dr. All the best!

Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/30/10 11:17 PM

thanks emma!

it does sound like the same thing. mine only last til i lower the pain, thankfully i can do that with an icepack. soon as the ice hits it, the body starts to calm down.

i do have a BP monitor and that was the first thing i tested, but my BP always stays low. thought it was just a pounding heart, but the heartrate tonight while just laying on the bed after taking a shower, nice and calm but feeling pain since i was laying down without any ice and my pulse was 88, then 83, so high. then i did some deep breathing and was able to get my pulse down too, even though the heart still pounds. i'd hate to add yet another drug like beta blockers if i didn't have to, i feel like i'm already on so many drugs. and when i get the pain to die down, all the other symptoms go away, so i've been focused on treating what is causing the pain, trying to get at the source of the problem. though if i could use my mind to do it, well, i'd like to try that too.

valium? i could ask about that. thanks. like you, i'd only use it in an emergency situation. especially since i take a muscle relaxant at night. certainly wouldn't be mixing those drugs. i wanted my physiatrist to write me a prescription for a pain med, even tramadol, just for emergencies, when my SI tweaks to the point of making me scream, but she said i'd have to come in like that, she'd have to see me like that, i told her i wouldn't do that to myself, but got the rheumy to prescribe the tramadol for emergencies, then went on LDN and it became a moot point. don't know why so many doctors let us suffer in pain when there are things that can help us. i know addiction is a scary thing, but so is severe pain. anyway, that's in the past.

you're right, i hate to use the word panic attacks as then people think its a scared, nervous, fear thing. and its not. not even a little bit. its a pain thing. maybe the brain is involved, but its a response to pain. and not even an emotional response to pain. even when it happens, i don't feel worried or scared or anything like that. that's why i say its almost like an out of body experience.

i do think i will start trying to talk to my doctors about this. surely one of them will be familiar with it, you would think? maybe a psychiatrist that deals with chronic pain patients? i just don't know? but somebody must be familiar with it.

and yes, the GI tract. last year the pain was so bad, that my GI tract was screwed up enough that my body stopped digesting food properly and i dropped almost 10 lbs as i watched food go in one end and out the other (no, not a pretty sight!). the gastritis was the worst in the morning. i've had almost 20 years experience managing my gastritis so during the day i could feed it, give it ginger and mint and psyllium, but at night when it would get empty, that was the worst. mylanta right before sleep was the only thing that truly saved it from getting any worse than it did. but it was a rough month. and surprised the doctors didin't understand the pain - GI connection for you; its one of the major problems with burn victims, its a well known connection. interestingly, my doctors thought that maybe the GI symptoms came first (IBD) and then the musculoskeletal pain second. i let them test me for IBD, figured it was about time for another colonoscopy anyway, and i do have gastritis which then leads to IBS anyway. and it was a good thing that i had the colonoscopy as they removed a few polyps and saw some ulcers in the small intestine, common for people with spondyloarthropathies, and figure that data will help me with a dx. but now that i'm going through a milder version of last fall, i can see its pain first, followed by GI upset. interestingly, at the start of this flare i had the worst case of constipation, all the fiber and water and exercise in the world wasn't making a dent, the only thing that was saving me was psyllium. now with all this pain, now my bowels are showing that my body is once again not digesting food all that well, not as bad as last fall, but still, not great. so yeh, i know exactly that which you describe.
Posted by: alohaben

Re: i feel like i'm going crazy.......but i'm not! - 08/31/10 09:31 AM

sometimes you feel like a nut, sometimes ya don't.

it's why the have mounds.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/31/10 03:06 PM

thanks ben! laugh2
Posted by: mom2many

Re: i feel like i'm going crazy.......but i'm not! - 08/31/10 03:51 PM

I recently had this physical panic attack for a couple of days due to hormones. Ativan was a great help. I'm good at calming myself down, so I know it wasn't my mental state, it was a physiological something going on.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/31/10 03:57 PM

hi micki,

just went and read up on that drug. due to the way it says to take it and potential issues with taking it too long or stopping ti too abruptly. if i were to take something like that, i'd want to do it rarely.

so may i ask you how you took it. how much, how often, for how long, etc?

Posted by: mom2many

Re: i feel like i'm going crazy.......but i'm not! - 08/31/10 06:11 PM

I've been on it almost non-stop for 2 years. I've had an oral steroid taper and several injections, but I can't remember getting that panicky feeling before. I suspect I did, though. My most recent burst of pred was an injection. Today I started on 20mg of pred. I was on 40mg daily a couple of years ago for several months and developed myopathy that resolved when I weaned off it.
Posted by: Sue22

Re: i feel like i'm going crazy.......but i'm not! - 08/31/10 10:03 PM

thanks micki,

now that things are feeling better in my upper back, but sitting the last two nights was really making my neck muscles go into spasm and making this icky feeling come on, the pain really feels to be radiating from my neck, C-spine. wonder if the bad disc they found in my neck during an MRI last year is pressing on some kind of nerve or something. need to go to the doctors and ask what can be done for this. really not as much pain as icky feeling, neck spasms, temperature not being regulated properly, headache, digestive system not digesting its food, etc.