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

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Regular Member

Date Joined Aug 2011
Total Posts : 24
   Posted 8/24/2011 5:01 PM (GMT -6)   
*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?*


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 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.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 8/24/2011 5:59 PM (GMT -6)   
The pain all over could be lupus or RA, but really the doctor can tell which one or something different for sure.
The lack of restful sleep can make you extremely achy and tired.
I have sleep apnea and before it was diagnosed I felt horrible all the time.

Good luck in finding an answer with the doctor.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 8/24/2011 7:37 PM (GMT -6)   
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 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.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Nov 2010
Total Posts : 877
   Posted 8/25/2011 2:22 PM (GMT -6)   
sometimes it takes years to finally get a diagnosis because too many things have the same symptoms. And, some have nothing in their blood work to back the symptoms up.

I say the most important thing is to find a good rheumy that will treat your symptoms while looking for the cause.

I hope you can get a referral to a good rheumy in your area, one that will be compassionate and a good listener. One that will work with you on treating your symptoms until you find the right combinations of meds that will work.

keep us posted.
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

New Member

Date Joined Aug 2011
Total Posts : 4
   Posted 9/2/2011 1:51 PM (GMT -6)   
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...... ?

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 9/7/2011 10:33 AM (GMT -6)   
Hey sparklecity-- Do you have asthma? Asthma tends to run with all this mess and with the thyroid problems. The reason I ask is that I had a pulmonologist run the sleep study on me and he found I had then mild COPD/asthma and added both an inhaler and flonase nasal spray to my "before sleep" regimen. I had some chronic sinusitis and bronchial inflammation and these two things opened up the passages before sleep. I had some good success on them for a long while. Getting my "subclinical" thyroid treated helped alot, as did dealing with back pain, etc. Even though my thyroid tests appear normal, my antithyroid antibodies were very very high and I had lesions on my thyroid. I really needed it treated despite the unspectacular bloodwork. Sounds like they are figuring things out. It takes a long time sometimes.
Love, Marji

Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes

Regular Member

Date Joined Aug 2011
Total Posts : 24
   Posted 9/8/2011 8:15 PM (GMT -6)   
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.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 9/9/2011 2:27 PM (GMT -6)   
Speaking of other problems I have hypothyroidism, sleep apnea, asthma, several environmental and drug allergies. Not to mention degerative disk and facet disease and lupus. I did suffer from GERD, but I had a Nissen fundoplication to fix it.

It's strange how it all ties together.

New Member

Date Joined Sep 2011
Total Posts : 1
   Posted 9/9/2011 10:34 PM (GMT -6)   
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. turn
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