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Old 06-24-2010, 12:00 AM   #1
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alli06 HB User
Autoimmune Disorder or Fibromyalgia

Hi Everyone,

I'm new to this thread and was wondering if I could get some insight about my condition. I've been to different doctors so I'm still currently frustrated with my situation because I've had several blood tests done with different doctors and my ANA is always positive. My family doctor told me at first when I had positive ANA that I just had rheumatoid arthritis, another doctor didn't believe me when I told him I had arthritis because I'm only 25 years old, I then had a blood test with him and he said that I have systemic lupus, I also went to another doctor for a blood test who told me the same thing. My rheumatologist said I don't seem to have any other symptoms of lupus and that getting some orthopedic insoles would help because I have flat feet yet I know that's not really what my problem is. When I recently went back to my family doctor he told me I have fibromyalgia. I also went to to a naturopath who told me it could be my thyroid but I have a gut feeling it's not that so what I want to know is how can I find out if I have an autoimmune disorder for sure or if I have fibromyalgia. Sometimes I have sleepless nights where I feel like an insomniac even though I'm dreadfully tired, other times I feel like sleeping all day. The pain in my body travels throughout my whole body, some days I get pain in my legs where I can't walk very fast, other days I feel like I have hot spots on my back and neck -it feels like a burning sensation and it's difficult to get out of bed, other times it's in my wrists and arms where they hurt too and I feel like I need to stretch them or massage them to make the pain go away. I suffer from frequent headaches as well, I know it could be because I'm anemic too. I get sick with cold and flu very easily. Some days I feel nauseous too like I'm about to vomit. I also suffer from frequent urination where I have to run to the bathroom every half an hour or so. I am very sensitive to the sun as well, last summer I got a small rash like spot on my forehead which left discoloration in my skin and left a lighter patch of skin when the outer layer peeled off similar to tinea versicolor. I'm also very intolerant to gluten and when I eat anything with gluten or wheat in it my pain seems to worsen. I also get very irritable at times and suffer from depression too. So if anyone has any helpful suggestions on how I could find out what exactly is going on I'd really appreciate it. I know it could be fibro or lupus but it's so difficult to tell which one I have.

Last edited by alli06; 06-24-2010 at 12:07 AM. Reason: forgot to add something

 
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Old 06-25-2010, 03:18 PM   #2
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Re: Autoimmune Disorder or Fibromyalgia

it sounds liek you have gluten intolerance and need to completely remove gluten from your diet. joint pain is a symptom of celiac disease i understand. good luck! you may also want to cut out casein (milk protein).

 
Old 07-15-2010, 06:34 PM   #3
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alli06 HB User
Re: Autoimmune Disorder or Fibromyalgia

Thanks for the reply. The things is I've cut out gluten and dairy completely already since I can't stomach either anymore but I still have the chronic pain and fatigue so I don't know what to do because all the doctors I've been to tell me something different and I've had numerous blood tests done over the past few months, as a matter of fact I just had one done today again, and I had one done last week as well and I'm just getting frustrated because all the doctors I have been to haven't been all that helpful to me.

 
Old 07-15-2010, 07:07 PM   #4
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Re: Autoimmune Disorder or Fibromyalgia

I've been diagnosed with both of these things and eventually, by being followed long term by a doc who believed me, found out I have rheumatoid arthritis.

For starters....fibro is a pain disorder and if you have any markers for inflammation, especially a positive ANA, you don't have fibro. Sometimes people get fibro on top of another disorder but that is different. Fibro people get mad at hearing this but the latest info and studies show that fibro is a pain disorder and not inflammatory. No fevers, no crippling joint problems, nothing that will kill you unless you kill yourself due to the unrelenting pain. I'm not saying it's not a bad disorder...it's hell for those who have it but way too many people are told they have fibro when in actuality, they may have Ra or lupus and are missing valuable time starting treatment.

You need to find a doc, preferably a rheumatologist, who will follow you. It can take years to figure out exactly what is going on but you can be treated in the meantime. Don't be embarrassed if you change doc after doc...I think I've been through about 10 until I found someone I liked who listened to me. As my OB/GYN said to me....rhuematologists are a "squirrely" bunch. They have to deal with people in constant pain who will never get well and you have to have the personality to handle that and many don't. The trick is finding one who does and you have something golden.

And consider seeing a therapist who deals with chronic pain who can help you with the depression. Anti-depressants can help with depression and pain. I see one and he is my lifeline to sanity.

Hang in there. I bet it turns out to be a type of immune disorder but what kind, who knows. Do you have fibro on top of it...possible...but all too often it's a diagnosis they give when they can't figure out what the real problem is.

Got questions, I'm here or on the arthritis board.

gentle hugs........Jenny.....(primary osteoarthritis, primary RA, secondary Sjogren's Syndrome and secondary gout...that's 4 kinds of arthritis...and counting)

 
Old 07-20-2010, 10:52 AM   #5
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Re: Autoimmune Disorder or Fibromyalgia

Hi! I am a Newbie! I just want to let you know that I too am ANA positive and I have Fibromyalgia, I have an appointment with an Endocrinologist specialist on 8/2. Did you know that further studies on Fibromyalgia are linking the problem with hypothyroidism even though your levels are in the normal range. If you go online search for Fibromyalgia link to thyroid, all sorts of info comes up. All my symptoms lean towards problem with thyroid!!! I pray this is the problem!

 
Old 09-12-2010, 07:17 PM   #6
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Re: Autoimmune Disorder or Fibromyalgia

Quote:
Originally Posted by jennybyc View Post
I've been diagnosed with both of these things and eventually, by being followed long term by a doc who believed me, found out I have rheumatoid arthritis.

For starters....fibro is a pain disorder and if you have any markers for inflammation, especially a positive ANA, you don't have fibro. Sometimes people get fibro on top of another disorder but that is different. Fibro people get mad at hearing this but the latest info and studies show that fibro is a pain disorder and not inflammatory. No fevers, no crippling joint problems, nothing that will kill you unless you kill yourself due to the unrelenting pain. I'm not saying it's not a bad disorder...it's hell for those who have it but way too many people are told they have fibro when in actuality, they may have Ra or lupus and are missing valuable time starting treatment.

You need to find a doc, preferably a rheumatologist, who will follow you. It can take years to figure out exactly what is going on but you can be treated in the meantime. Don't be embarrassed if you change doc after doc...I think I've been through about 10 until I found someone I liked who listened to me. As my OB/GYN said to me....rhuematologists are a "squirrely" bunch. They have to deal with people in constant pain who will never get well and you have to have the personality to handle that and many don't. The trick is finding one who does and you have something golden.

And consider seeing a therapist who deals with chronic pain who can help you with the depression. Anti-depressants can help with depression and pain. I see one and he is my lifeline to sanity.

Hang in there. I bet it turns out to be a type of immune disorder but what kind, who knows. Do you have fibro on top of it...possible...but all too often it's a diagnosis they give when they can't figure out what the real problem is.

Got questions, I'm here or on the arthritis board.

gentle hugs........Jenny.....(primary osteoarthritis, primary RA, secondary Sjogren's Syndrome and secondary gout...that's 4 kinds of arthritis...and counting)
Jenny what you said made a whole lot of sense to me. After a number of years of suffering with pain that has taken over my whole life and having symptoms of RA, Lupus, pick the arthritis of your choice, and Fibro too I was sent to a Rhemy because my doctor's just couldn't figure out what's going on. On my first visit I was diagnosed with Fibro. I thought that was impossible. I thought I hurt way too bad...there had to be more to it than just that. My last doctors didn't even believe Fibro was a real thing! What you said about a high SED rate and CRP too is true. I have both. At last test last month my SED rate was 74 and my CRP was 15.45. Fibro isn't supposed to come with those things. I have inflammation in my feet, ankles and shins plus my hands and fingers. My Rheumy didn't want to talk about those things. She put me on Lyria which can cause inflammation...it also makes you dizzy and lightheaded and a fell several times so I had to come off it. The inflammation didn't seem to be an issue for her. So what? She checked me out for a few things and told me on the first visit I don't have Lupus or RA because I've never once tested positive for either one. ?? No matter what she gave me for treatment it didn't work. Lyrica was bad. Cymbalta was bad. Savilla was worst of all!! It gave me terrible palpiations and scared me half to death. She insisted I keep taking it. I didn't and I wrote her off. I live in NJ and I have an appointment with a Rheumy in Philly at Jefferson University Hosp next month. He does not treat Fibro. But we're looking for what is causing my SED rate to be high and my CRP to be high too. I'm just hoping he doesn't want an MRI....I could never survive one. I can't be that confined. I'd lose it! I had trouble with my bone scan too. Depression is a killer. That should come as no surprise. Whatever this is has taken my whole way of life...made me disabled and took the pleasaure out of living. No, I'm not ready to cash in my chips. I'm way too young for that. I just want to feel better.

I have a question...with autoimmune situations...what is considered a high SED rate??
Take care,
sharon

 
Old 10-11-2010, 04:46 AM   #7
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Re: Autoimmune Disorder or Fibromyalgia

First of all Fibromyalgia is a central nervous system disorder. I suggest that you read Devin Starlanyl's book Fibromyalgia and Chronic Myofascial Pain. It is an oversized book and an easy read and explains everything about fms and cmp. And find a good rheumy. Where do you live? Someone on this board might know of a good one.

 
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