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Q: auto immune disorder ??
asked by: mumakezto4 on December 15th, 2008
New User
Hiya all x x


I'm 27 yo female, i haven't been well for about 6 years,My dr doesn't seem that bothered to help me but i understand he has alot of patients to see, so he probably won't have time to piece all my symptoms together.

my main symptoms are fatigue ( i have a sleep every day), malaise (as thou i have the flu), sometimes every muscle in my body hurts as though i have ran a marathon i think its called myalgia??, at the minute i'm getting lots of mouth ulcers the ones under my tongue hurt the most!! dry mouth and lips especially in the morning i've starting putting vaseline beside my bed as my lips keep cracking. i feel as though i have bad joints which includes ankles knees and hips, very bad backs and sleep paralysis. It usually comes in flares and when i have a flare up i'm in pain and generally end up on the sofa.

I have had a total of 7 pregnancies, 3 of which ended in miscarriage, My last pregnancy i developed pre eclampsia which is apparently not a common as it is usually your 1st? i also ended up with post pre eclampsia and was ion blood pressure meds for about 4 months, my urea was also high for about 4 months after the birth.after my last 2 caesareans i also had wound infections and celulitious

I went to see my doctor about it all about a year ago and he done a blood test for thyroid which came back clear so he said i had chronic fatigue syndrome, he gave me anti depressants which gave me sore heads, so he changed me to anafranil (for narcolepsy ) which made me extreemly drowsy to the point i couldn't function at all!

So for now i'm just managing, i'm always at the doctors for one thing or another and i'm starting to feel like a hypocondriac so i don't know whether I will be annoying him if i go back to see him .


I'm sorry for the long post but i just know something aint right, i feel about 80 and it's really effecting my mood, i have no support from family as they cannot feel how i feel when i have a flare up. and it just gets so frustrating and upsetting Sad eek
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zigemyster
replied on December 15th, 2008
Moderator
I'm not familiar with anafranil for narcolepsy and you would think a drug that is made for narc would not make one drowsy. A drug that works wonder for chronic fatique / excessive daytime sleepiness / narc would be Provigil. It stimulates something in your brain that 'wakes' you. It is not to be taken instead of sleep.

What other doctor(s) have you seen regarding your widespread muscle pain? There is a disorder called Fibromyalgia and it can be managed with an anti-inflammatory diet. I was in pain for 8 years and now my fibro is completely under control as long as I eat foods that does nt cause inflammation (I have several posts in the Fibromyalgia which you might find helpful).

It is hard for people, especially family, to understand as what they see is on the outside and it generally is something like '...but you look good'... Yeah, spend 5 minutes in this body and feel the pain that I have.

~Zig
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Users who thank zigemyster for this post: mumakezto4 
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Sereena
replied on December 15th, 2008
Experienced User
There are a lot of treatable diseases that can cause those symptoms, sometimes a combination of ordinary ones. Did your doc ever do full bloodwork on you or just specific things? When I experienced chronic fatigue syndrome I was tested for hypothyroidism as well as Lyme disease, lupus and other immune disorders, as well as nutrient deficiencies.

Your doctor cannot and should not diagnose you with CFS until he's ruled out every possibility, especially if you've been having complicated pregnancies.

Mouth ulcers/dry mouth/lips are both explained by cold weather and a weak immune system, so if you don't get them constantly I wouldn't worry about it. Just drink more liquids and try taking L-Lysine. It's a natural amino acid, it helps treat sores. I took it when I was being treated for an infection and it made my ulcers go away. Maybe you're lacking in some nutrient like that.

You should try some supplements and the diet zigemsyter suggested to at least help you feel better. Good luck.
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Users who thank Sereena for this post: mumakezto4 
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Catzmommy
replied on April 13th, 2009
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re: auto immune disorder ??
Have you been tested for Behcets? A lot of your symptoms are a dead match for it. South and vaginal sores are the hallmark of it as well as sore joints. Find a rheumatologist who knows what he is doing.
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