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#409521 - 08/24/10 06:07 AM 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 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.
_________________________

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)

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#409557 - 08/24/10 11:43 AM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
avonldy Offline
Major_AS_Kicker

Registered: 02/26/10
Posts: 2190
Loc: N. Sacramento Valley
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.
Donna
_________________________
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

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#409565 - 08/24/10 12:06 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
Johninco Offline
Veteran_AS_Kicker

Registered: 06/21/10
Posts: 545
Loc: Colorado
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!

John
_________________________


Author: Mayan Solstice: A Novel of 2012 (http://www.createspace.com/3420054)

If you would know a man, observe how he treats a cat.-
from "The Door into Summer" (1957), chapter 1 (Robert Anson Heinlein)

Love is the condition in which the happiness of another person is essential to your own. (again, RAH)


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#409641 - 08/24/10 11:01 PM Re: i feel like i'm going crazy.......but i'm not! [Re: avonldy]
Sue22 Offline
Very_Addicted_to_AS_Kickin

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

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
#409642 - 08/24/10 11:07 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Johninco]
Sue22 Offline
Very_Addicted_to_AS_Kickin

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

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
#409660 - 08/25/10 01:06 AM Re: i feel like i'm going crazy.......but i'm not! [Re: joannesford]
Dow Offline
Imperial_AS_Kicker

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

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#409668 - 08/25/10 03:39 AM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
Sue22 Offline
Very_Addicted_to_AS_Kickin

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

http://en.wikipedia.org/wiki/Autonomic_nervous_system

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

http://www.spineuniverse.com/treatments/pain-management/nerve-blocks-medication-injections

http://www.spineuniverse.com/treatments/pain-management/sympathetic-nerve-block-information

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.
_________________________

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
#409671 - 08/25/10 04:20 AM 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
Sue

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


Edited by joannesford (08/25/10 11:24 AM)
_________________________
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

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#409675 - 08/25/10 05:29 AM Re: i feel like i'm going crazy.......but i'm not! [Re: joannesford]
Dow Offline
Imperial_AS_Kicker

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

P74

P75
_________________________
Dow

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#409689 - 08/25/10 09:37 AM Re: i feel like i'm going crazy.......but i'm not! [Re: Dow]
joannesford Offline
Black_Belt_AS_Kicker

Registered: 08/06/10
Posts: 446
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


Edited by joannesford (08/25/10 11:50 AM)
_________________________
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

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