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449658 tn?1211304322

Just diagnosed with Fibromyalgia - is this truly what I have?

I was recently diagnosed with Fibromyalgia and I am waiting on another appt. for further discussion on options to help me deal with day to day life.  The below are my symptoms - does anyone have any other ideas about what this could be?

-intense fatigue
-muscle pain (stiffness in back/shoulders/neck)
-sore body
-carpal tunnel syndrome
-eye floaters
-weight gain
-hair loss (replaced with strange coarse black hair)
-loss of concentration
-dizziness/nausea
-possible sleep apnea (one episode of 84 blood oxygen for 23 sec. while sleeping)-home sleep study
-lack of energy (difficult to exercise)
- tender to the touch
-loss of libido
-bloating/gas
-depression (thoughts of suicide)

-most blood tests appear normal: (see below)
-evidence of prior epstein-barr
-ESR - 11 mm/hr                                        -TSH - 1.69 uIU/mL
-cortisol - 9.5 ug/dL                                    - Free T4 - 1.2 ng/dL
-B12 - 360 pg/mL                                       - Streptozyme Screen - negative - titer <100
-ANA Ab - negative titer <1:40                     - Rheumatoid Factor - 10 IU/mL
-DHEA Sulfate - 129                                   - WBC - 9.4 K/uL
-Glucose - 113 mg/dL (non fasting)              - platelet cnt - 234 K/uL
*-CRP Quant (CRPHS) - 1.2 Mg/dL (inflammatory disorders normal range <0.8 mg/dL)
-HLA B-27 Antigen - Not Detected

- Western Blot Lyme - Reactive to 2 of the 10 (41kD and 58 kD) for IgG, and 1 of 3 (41kD) for IgM

I'm hoping that someone can look at these results and figure out what is wrong with me.  My rheumatologist has put me on Provigil as he feels that my fibromyalgia may stem from a mild form of narcolepsy.  However, I will be seeing him again in a few weeks for examination of further testing.

I have done extensive research and have come across many possibilites - but it seems like some of the blood work always everything out.

Anyone have any thoughts?  I appreciate any insights!
20 Responses
Avatar universal

Honestly it sounds like either lyme disease or fibro and CFS. I know that many patients who test negative for lyme disease, have the illness. I would consider checking into additional information on your lab results and consider calling the lab who performed the lyme disease tests. You may want to speak directly with the Pathologist or the lab tech that did the testing.
198703 tn?1207710228
I think PlateletGal has a good point.. Lyme disease might be a consideration.
Although I have had a very similar experience .. Doctors mention Fibro to me many times.. but I knew that wasnt right.. I was not sensative to touch or experiencing pain in that way.. I tried to explain what type of "pains" I was having but no one seemed interested in that.. mine were more vascular in nature.. possibly nerve.. but is definitely somethign pulsing throughout my body.. with many other "side effects"
The fatigue and muscle weakness being the biggest problem.
I recently read a post from someone that was asking about Adrenal Fatigue/ Burnout. I have been reading on that and find it extremly interesting.. much of my pain generates from that area (above the kidneys) and down my back as well.. would make much more sense than anything I have been told so far. they did also say CFS  and some possibilities as to why.. stress etc.,.but no one mentioned at all the physiology of the adrenal gland and its role in all of this.. it is also interesting to me that other members of my family suffer from similar difficulties as well as anxiety.. (adrenal related as well?)
Thought it would be worth your time to look into that.. for anyone with these disorders..
As well ,.. the depression and despair it can bring about make functioning at all very difficult at times. hang in there..
Hope you find some answers.. I know how frustrating it is!!..
Avatar universal
Looks very much like lyme to me.  Was the western blot through Igenex?>
449658 tn?1211304322
No, unfortunately the lyme test was done through a lab in san juan capistrano california.  I was lucky to get that test at all - i had to ask my doctor to test me for it - because i really felt that this is what it was - i've heard a lot about igenex - i'm really considering getting another test done with them - have you had experience with them?  How does it work?  Thanks for your input - it is greatly appreciated!
449658 tn?1211304322
Thanks for the info - i will definitely look into all of this - anything is certainly possible!
Avatar universal
I personally think you are even more likely to have lyme if a lab that does not specialize in tick-borne disease testing showed that many positive bands.  You my get a CDC positive test from Igenex as this lab tests for more strains than standard labs.  Good luck.
Avatar universal
You can go to the website.  I think it's Igenex dot com. I know there is a 1-800 no posted on the website.  Just ask them to send you a kit.  There is no charge until you send the kit back in with the sample.  The instructions are inside.  I would just get a lyme western blot IGG/IGM to start.  I wouldn't waste your money getting tested for co-infections at this point.  You will need a doctor to sign off for the test.  When I did it in 2006 it was about $200.  My insurance did not cover it.  I don't think Igenex takes insurance but you can submit it later to your company and see if they will pay for it.  I know of some people who did get it covered when they submitted it.
449658 tn?1211304322
Thanks for the info - i'm definitely going to look into it!
Avatar universal
sounds like your thyroid could be low but you dont write the lab ranges or the free T3 result. The T4 seemed low (1.2) what is the lab reference range? Do another FT4 test and have a look to see if free T4 and free T4 are in or above the middle of the range. If not, your thyroid could be struggling...your TSH could still be too high at 1.69.

Your symptoms match hypothyroidism too (weight gain, hair loss, carpul tunnel, pains, fatigue)
Avatar universal
i meant free T3 and free T4. check B12 reference range too as could be lowish
449658 tn?1211304322
Thanks for the idea - my t3 was actually not tested - but the other thyroid items seemed to be in normal range - my b 12 is also quite normal - I did notice that my WBC count and RBC are kind of on the high end, but my MCV and MCH are on the very low end -  trying to do research on what that might mean - thanks again!
Avatar universal

One thing that I think I should mention is that the majority of CFS and fibro patients have thyroid problems. Per Dr. Kent Holtorf, usually the standard tests miss the low thyroid because the TSH is not elevated in individuals with fibro or CFS because of pituitary dysfunction. However, many fibro or CFS patients will have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions

The thyroid tests that physicians should order in patients who have fibro or CFS is a T3 REVERSE or a PTH. Patients should also tell their physician how Dr. Holtorf is treating low thyroid problems in CFS and fibro patients. (see above)
Avatar universal
I was dealing with fibro for almost a year and then was diagnosed with Lyme Disease.  Unfortunately it's chronic lyme, and I've been sick for a long time so my doctor thinks that I have fibro that was caused by the lyme.  So it might be fibro OR something else or fibro AND something else.  
The 41 band on the western blot is lyme specific and you have both the IgM and IgG.  I would try to find a Lyme Literate doctor to review your test.  
Honestly, your B12 seems low to me also.  Did you also have your folic acid levels tested along with a CBC?  These three things together can confirm or rule out B12 deficiency or anemia, which can cause similar symptoms to fibro and lyme.  
Avatar universal
You can ask your doctor to send your test to Igenex for testing. That way your insurance should cover at least part of the test. Mine did. Please let us know results. Good luck.
Avatar universal
I can pretty much guarantee that you have Hypothyroidism.........those were the exact same symptoms I had.  there are a lot more as well.  78% of all hypothyroid cases go undiagnosed and I am truly surprised that they diagnosed you with CFS because the symptoms are similar.  But I do know that new research has found that Hypothyroidism, CFS, Fibromyalgia and MS and Lupus are interlinked somehow as well.  Now its just the waiting game for the DR's to figure it all out and make them believe that it is all real.  That might take forever.
but yes, have them test  you for Hypothryoidism.  Memory loss, lack of concentration, headaches (but not really headaches more like a pressure)that never goes away.  Are just a few more symptoms.

Good Luck
Avatar universal

I agree with you. The research treatment that I'm currently doing is not only treating CFIDS and fibro... but also autoimmune conditions as well.
449658 tn?1211304322
Thank you all for your input - due to all the comments I have done some research on hypothyroidism.  I don't go to the rheumatologist again until april 4th - so in the meantime I have been measuring my basal temperature each morning - so far my readings have been a little low - 97.18, 97.51, and 97.12 for the last 3 days (under arm measurement).  Any thoughts from anyone on if this is indicative of thyroid issues?  I plan to take my measurements of my basal temperatures to the doctor when I go.  Also, I'm considering calling my regular doc to ask for the reverse T3 etc, so i can have those results in time for my appt. as well.  However, once again, I fear being considered the hypocondriac girl calling again!  
Avatar universal
Just know that even if your thyroid panel is even a point off, which, most doctors will jsut disregard anyway, you should insist to be put on something that will elivate the problem even it is just temporary.  
When I was diagnosed I was at 36.2, the dr was shocked that no one ever checked me before as was suprised on how long I could have been like that .  I should have had coma from what he said.  
Once you are dignosed it will take a weight off and you'll know your not crazy.  My original doctor even doubted my dr who did diagnose me.  Yeah I had fun with that one.  
Good Luck!
449658 tn?1211304322
Wow - thanks for the heads up.
Avatar universal
I am on the same meds provigil it really helps you may get a huge headache or nervousness but try it for a while it helps me ALOT!

Good luck ... I was where you were 6 months ago and went through tons of docs glad I finally got diagnosed now i just try to keep going. Don't give up.... you can make yourself disabled fast if you give up.
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