My story. Please , any insight would be much appreciated.

*I posted this on the Fibromyalgia board, but now that things are looking like possible autoimmune/lupus, I wanted to get your opinions. Is this how any of you have felt before diagnosis?*

Hello,

I have been having sleep/pain issues for 10 years. It seems that no one really knows what is going on with me but they label it fibromyalgia. I've had tons of blood work done that didn't find anything too significant (slight hypothyroidism that is being treated, some vitamin deficiencies that have been corrected, blood sugar issues which I'm supposed to be working on through diet and exercise).

I also had a sleep study done in 2007. It showed that even in deeper sleep, I had awake-like brain waves that intruded . This happened hundreds of times during the night. Most were what they labeled "spontaneous arousals", as in they were not due to sleep apnea or restless legs. They said it seemed like chronic insomnia. No real suggestions were given on how to overcome this.

I also have pain. Not all the time but a lot. Especially in my calves, hands, arms, wrists, back. Stiffness after sitting, everything worse in the AM. Since the sleep study, my sleep has also gotten worse. I am concious of being awake a lot. And the one thing that has happened everyday for 10 years is that I wake up not refreshed. I feel so exhausted that it is hard for me to get to work. Its a terrible fatigue and almost like a slow burn in my arms and legs.

Another thing: my bloodwork always shows elevated SED rate and C Reactive Protein...so there is inflammation in my body but we don't know where. *Upate*--ANA came back "borderline" abnormal, I believe 1:40. Seeing Dr. to discuss Monday.

Does this sound like fibro or some other chronic illness that Dr's are not finding? Is there anything else I should be getting tested for? I'm having a 2nd sleep study next month.

I have a theory that maybe anti depressant use since age 13 casued something to become mis wired in my brain and this is the result. I began on SSRI's so young due to severe OCD. They worked wonders for this but I do wonder the effect of such strong medications on a developing brain.

I am on Cymbalta 120 mg which works well for depression, but hasn't helped my aches or fatigue. Provigil/Nuvigil helped but the side effects were bad. I've tried Melatonin, Trazodone, Chinese Herbs, Acupuncture, Gluten Free Diet....nothing has made me feel less tired and achy. I also saw a naturopathic Dr. in town who is known for treating fibro. She had me on a ton of supplements that didn't do much. She also suggested the gluten free diet, which did not help.

Any insights would be helpful. Thanks.

Check out the Lupus Resources thread at the top of the forum. It suggests what lists to make to take with you to visit a rheumotologist. They are the drs trained in auto-immune diseases -- try www.lupus.org to find a group near you - the drs active in the local group are quite often the drs interested in lupus & auto-immune diseases in your area and will be of much more help than a general physician.

hey sparklecity - you weren't treated with fluoroquinolone antibiotics 10 years ago by any chance? they are notorious for side-effects which are diagnosed as fibro, and, insomnia is the first to happen? usually followed by thyroid issues. then the muscle probs? fq's were the trigger for my autoimmune disorders, which followed the other nasties. just wondering...... ?

Lalah--I don't believe I ever had the antibiotic.

Curedforreal- Yes, I actually do have mild asthma. It mainly kicks up in the Spring or when I'm sick. Interesting, I'll have to look into that. The thyroid as well. I am on 90 mg Armour Thyroid and as you said, all my thyroid numbers came back normal now (actually a little low if anything).

It is all so maddening. I can't wait to see the rheumy on the 27th and start on the path to some answers.

I went through years of the same thing that you are going through.  Most of my teenage years were spent in tears and pain.  Swollen joints, fatigue, hair loss, unexplained rashes, joint pain so severe that I could not walk some days.  I had asthma and was on steroids quite a bit.  My blood work was always abnormal but not by much. When I got married I miscarried 6 times.  The doctors kept saying that it was because I was overweight.  I am now 54 and this was many, many years ago.  I went to so many doctors and finally just gave up because they all looked at me like I was crazy because they could not find much wrong.  Finally I went to a rheumatologist, bless her, who diagnosed the lupus.  She said that I had all of the classic symptoms and she was confused as to why I had to hurt for so many years.  My last ANA was very low.  She treats the symptoms and listens when I say that I hurt.  Don't give up.  Autoimmune disease runs in our family and yet I was never tested. I have been on different medications and some have been worse than the pain.  Gastrointestinal problems, fluid around the heart, not being able to walk some days, etc.  I still have some pretty bad days but I am on Methotrexate twice weekly, Plaquinil, Cymbalta, Imuran (sp) and Lortab 10/500. I have steroid injections and Toradol when I get to the point where my hips and legs dont want to move.  I hope and pray that you will get better.  My biggest loss was my babies.  But they know so much more now than they did when I was young.  It has become worse as I get older though. But with medication and some lifestyle changes it is bearable.  Not everyone has the same manifestation with lupus and mine changes frequently.  Sorry so long winded. I did not know this site was here and it seems to be a blessing to have someone to talk to that knows what I mean.