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#409293 - 08/22/10 06:54 PM Re: i feel like i'm going crazy.......but i'm not! [Re: joannesford]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
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?
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#409294 - 08/22/10 06:59 PM Re: i feel like i'm going crazy.......but i'm not! [Re: EricaK]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
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.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#409302 - 08/22/10 08:02 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
joannesford Offline
Black_Belt_AS_Kicker

Registered: 08/06/10
Posts: 446
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

http://www.youtube.com/watch?v=77j9Eu3TWkQ

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

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

Love Joanne



Edited by joannesford (08/22/10 08:07 PM)
_________________________
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

Top
#409308 - 08/22/10 10:15 PM Re: i feel like i'm going crazy.......but i'm not! [Re: joannesford]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
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........
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#409315 - 08/22/10 10:49 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
Jewelz Offline
Third_Degree_AS_Kicker

Registered: 07/01/09
Posts: 296
Loc: Wisconsin
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!
Jewelz

Top
#409317 - 08/22/10 11:06 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
EricaK Offline
Royal_AS_kicker

Registered: 06/23/10
Posts: 3854
Loc: Colorado, USA
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
_________________________
ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!


Top
#409323 - 08/23/10 12:02 AM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
Dow Offline
Imperial_AS_Kicker

Registered: 03/11/08
Posts: 3231
Loc: Valley Cottage, NY
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...
_________________________
Dow

Top
#409337 - 08/23/10 01:44 AM Re: i feel like i'm going crazy.......but i'm not! [Re: Jewelz]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
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
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#409338 - 08/23/10 01:49 AM Re: i feel like i'm going crazy.......but i'm not! [Re: EricaK]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
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.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#409339 - 08/23/10 01:55 AM Re: i feel like i'm going crazy.......but i'm not! [Re: Dow]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
laugh2

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.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
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