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5 Replies
Marigold - April 17

Hello everyone, glad you are all here to learn from. I am learning rather quickly thanks to the forum, what I have been suffering for along time. I have auto-immune disease that has attacked many organs, adrenals, ovaries, exocine (saliva) and liver. These are either medicated or monitored for now. Perhaps the worst problem I have recently been learning of is fibromyalgia. I was first briefly told of it about 4 years ago but it was glossed over quickly and almost like it was just an imaginary emotional thing and never treated or taken to seriously so I followed my dr's lead and didn't think much about it either. I know different now as I have been getting worse and worse this past year so much so that in the past year I can only remember 2 weeks consecutivly that I felt anything like myself. Fibro has been a cruel lesson to learn on my own even with so many dr's visits for the auto-immune issues. I have been complaining and complaining about such a long list of seemingly rediculous symptoms that are consecutive and repetative. I sat the last few days and read through the site and just feel so fed up at the neglect I have recieved. I am (as I have told my rhuemy) not even functioning. All the while blaming myself because the auto-immune stuff is being controlled so how could I be this sick? I can't think, I can't move, I can't see straight, I can't sleep properly, I thought I was going out of my mind!
I hurt everywhere, especially my chest and ribs, I am stiff, my memory is gone, I cannot concentrate, I have a terrible time understanding the english language and speaking it is even worse, my eyes won't focus, I am dizzy and feel spacey and clumbsy, I have tremours and when I fall asleep I awake with an electric shock that feels like some kind of seizure, if I can fall back to sleep it happens again and again, my bladder doesn't seem to work right and my GI tract gets messed up so much that I cannot eat, my head has a headache that feels like inflamation and my face and jaw just throbs, my eyes get inflamed and I cannot tolerate bright light or loud noise (like car commercials on tv...I love my Mute button) There are probably other things but why go on this is enough. But now atleast I know I am not loosing my mind! I was on amitriptyline for a long time until two years ago when I was dxed with sjogren's disease which is drynes caused by the destruction of the saliva glands due to auto immune. It makes the body very dry and so does amitriptyline so the dr told me to stop taking it. Since then I have ben a worsening mess to the point now that I simply am a body where a life used to be. I do hope to learn all I can and to get to know you. Thanks so much for sharing your information and support. Marigold.

 

Fantod - April 17

Hi Marigold - Welcome to the forum. I have a friend who has Sjogrens and FMS. When I started to read your note I was thinking about Sjogren's before I saw that you actually have it. I'm so sorry as FMS is bad enough all by itself. Has your doctor tried Cymbalta alone or in tandem with Amitriptyline? I know Sjogrens dries out your saliva glands. Maybe the combination would be better for you. Have you tried some of the over the counter things available to keep your mouth moist? There are several products readily available to help with that. I am wishing the very best for you and that you find some information here that is helpful. You are not alone.

 

Marigold - April 17

Actually my dr's have done nothing for either the sjogren's or fibro. I have been told my SED rate is high. I take prednisone in a replacement dose for the Addison's disease (adrenal's) so I was told to double it when flaring but it only works as long as I double and from everything I have read prednisone is not a drug used for fibro anyway. I have been put on plaquenil it is used for rheumatoid arthritis and lupus which I have been told I have neither. That seems strange doesn't it? In my opinion my dr's know what I'm dealing with and are to busy to care. I am being passed around like the proverbial buck. The only way I know of amitriptyline is because once a few years back things escalated into pnuemonia. I was having terrible time with body pain and could not lay my head down on my pillow in the hospital. The dr on call came in checked me out and told me you have fibromyalgia. I thought what??? No I'm in here with pnuemonia???? So he gave me amitriptyline and it helped! So I kept on with it until a couple yers ago when the sjogren's came along, because of the dryness so they took me off it because of the dryness. I have been going down hill since wheather that's the reason I don't know. Last week I was so bad though that I called my rhuemy and asked her if I could stand the dryness could I try the amitriptyine again. She never bothered to call me back. Where or where does one find help with this? From Ontario Canada. Thanks so much for your post. What is Cymbalta?

 

Fantod - April 17

Hi Marigold - I just saw your post and I am way past furious that your doctors think it is ok to treat you so poorly. There is a Sjogrens organization : www.sjogrens.org on the internet which should provide you with more information and maybe a doctor in your area that treats it. As I understand it, part of Sjogrens is rheumatoid arthitis coupled with loss of collagen in your joints and moisture in your body. It is usually diagnosed by performing a biopsy on a saliva glad. Both Amitriptyline and Cymbalta are antidepressants. The standard dose for Amitriptyline when treating depression is about 150mg. With FMS it is used in much lower doses. The object of the exercise is to help you get restorative (REM) sleep so your muscles are rested and less painful. Cymbalta is used in the same way, and also to lessen your perception of pain. I know that Canada has a national health plan so you are really between a rock and a hard place. Unfortunately with a poorly understood chronic illness you must be your own advocate and scour the internet and not take no for an answer. Hard to do when you are not feeling like even getting dressed. I really feel for you. Call the local hospital and see if any of the doctors treat Sjogrens and/or FMS. Also ask about support groups in your area. I hope I've been informative and that you are able to find some help soon.

 

Fantod - April 18

Marigold - Here is the link for the Sjogren's Society of Canada:
http://www.sjogrenscanada.org/

 

Fantod - April 18

The Canadian Sjogren's sitelists a seminar being held on May 5th 2007 in Toronto for patients and families. This would be a great place for you to network and get some help and support. I hope you live nearby Toronto.

 

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