Wandering if Fibromyalgia is the right diagnosis for me?

[croanz16]

I had been diagnosed with Complex Regional Pain Syndrome since 2013. I walked with a limp and I had many other issues as well. I was doing physical therapy for about a year and a half. I now have a home PT exercise program I do. It helped along with the anti-inflammatory medication I was given (Mobic or Meloxicam) and with the help of Tramadol (Ultram) and Melatonin for sleep. When I turned 18 I thought it would be a good idea to see an adult Rheumatologist. They said it wasn't CRPS and stopped prescribing me the anti-inflammatory. Ever since then I have been getting worse again. It's my senior year of high school and I can't attend school daily or meet the requirements of my part-time job. I can hardly walk. Most of the time I'm walking like an 81 year old rather than an 18 year old. When I was diagnosed with CRPS shortly after I was put on Gabapentin for the sensitivity to touch. That has helped clear that symptom up a lot. The problem I have now is that the new Rhuematologist is thinking along the lines of Fibromyalgia. They told me it was because I don't have the hypersensitivity that I once had. But with medical treatment wouldn't that cause improvment of that symptom? My doctor took me off of the medication I was taking before. I do have sleep issues but its more like tiring faster than normal rather than waking up not feeling refreshed. I also run fevers at night the highest being 103F and the lowest 99.9F. The pain I experience is in both knees, hips, ankles, elbows, shoulders, wrist, all my fingers (all joints except the ones closest to finger nails), and the base of my toes. If you squeeze my knuckles it hurts a lot. I do have swelling in my fingers and knees however it never seems to be swollen when I'm at the doctors office (of course). I also have pain in my spine but it doesn't hurt to the touch only with certain activities. I do suffer morning stiffness that on the old medication (with anti-inflammatory) lasted about 4 hours now without it it last about 9 hours with exercise. I don't have x-rays on all the joints only two of them and they looked good for the most part. My blood work for sed rate is within the normal range and my ANA is negative. My biggest concern is my morning stiffness, fevers, symmetrical joint involvement, the lack of muscular symptoms as well as other Fibromyalgia symptoms such as tender points, the walking issues since the meloxicam was taken away, and the lack of improvement with the new treatment for the new diagnosis. As of right now I am taking Tylenol-Codeine (for pain), Gabapentin, and Baclofen (for sleep). I was also just prescribed Savella for the pain. I am concerned because my pain with Tramadol was fine (it kept e within comfortable range with Mobic) and the doctor keeps giving me these pills I don't need. I only asked for something for the stiffness. They told me that Fibromyalgia is non-inflammatory so it doesn't need an anti-inflammatory. If every patient isn't like the text book description then why can't I still have CRPS with the chance of it going into a remission or the possibility of a seronegative form of arthritis? If anyone could help me I would appreciate any medical possibilities or any advice.

Thank You,
Croanz16

[croanz16]

Thank you for understanding I have recently started having a sore throat that comes with the fever at times. Sometimes I'll have the sore throat for weeks at a time. I am going to ask my doctor about the possibility of Still's Disease. I also agree with you that most doctors today rely to much on the lab results and not the actual symptoms and complaints of the patient (after all we know our bodies better than anyone else!). I am going to make an appointment with my Hematologist to get the deficiencies checked.

Feeling Hopeful and Thankful,
Croanz16    

[TheLightSeeker]

Would have your MCH value ( total hemoglobin divided by the number of red blood cells in a volume of blood)?

In light of your low RDW, should your MCH be low also, which is likely,
then this scenario would be consistent with Iron Deficiency Anemia,
as suspected by your doctor, who by the way must verify this firmly, so you can proceed with getting it corrected!!!

If your MCH is high, then it could be  B12 and Folate Deficiency Anemia .
There's also the possibility of mixed anemia (Iron, B12 & Folate Deficiencies), where your MCH could be low, high or normal (just to confuse matters! lol!)

You need to address any such deficiencies asap, otherwise your health will not improve just by taking meds.
These are designed to help you cope with your symptoms, until the cause is identified and dealt with effectively, so you can return to normal health.


The swelling is usually a response to inflammation and/or infection relating to injury or disease process.
I guess in chronic conditions with sustained elevated inflammation the swelling would be more or less chronic, but will show occasional fluctuations , but I think it can also occur or exasperate it, when bodily fluids-specially lymphatic fluids-are not circulating well.
Try staying as physically active as your condition allows you, do proper diaphragmatic breathing (go to the normal breathing website-an excellent
resource for learning how to breathe for improved health-) and try lymphatic massage (on your own you can use a long handle natural bristle brush and do it as often as you want).

Finally, I believe Doctors rely too much on Labs* these days and often, when medical history and symptoms are ignored, it may leave many patients in limbo, untreated, under-treated or worse mis-treated!

*There are flawed tests, wrong tests, lab errors, false-negatives, false-positives, not specific enough, not sensitive enough...
I'm ranting now.

Hope this helps.
Niko

[croanz16]

I forgot to mention that I am anemic my Hemoglobin is low, HCT is low, MCH is low, MPV is low, and RDW is high. Doctor believes it is due to low iron.

[croanz16]

Can you tell me a little more about this seronegative arthritis? I have been wandering if the issues could be something arthritis related however my blood work for Rheumatoid Arthritis, Lupus, and Sarcoidosis seems to come back normal. I do have the symptoms of RA just not the x-rays or labs to prove it. Is it true that if it was arthritis that the swelling would never go down?

Thank You,
Croanz16

[TheLightSeeker]

Hi Croanz16.

Things to rule out are:
  
  Hypothyroid - Likely in the presence of an underlying & undetected infectio
like pathogenic mycoplamsa and its co-infections (search under Dr. Garth Nicolson here in medhelp-he's an expert in this field and part time contributor in medhelp)
Ask and insist for Free T3, Free T4 and reverse T3 testing!
Forgo the standard serum thyroid testing (TSH, T3&T4) which only indicate... serum levels
Having your thyroid function unregulated, will keep you in perpetual medical limbo.
Dr. Lowe from the Fibromyalgia Research Foundation supports the premise that most fibromyalgia patients are either hypothyroid or thyroid hormone resistant.

Seronergative arthritis.

Look also for any possible anemia issues (low thyroid function is linked to anemia as well) or haemochromatosis/iron overload, which may cause arthritic symptoms, joint and bone pain.

Hope this helps.
If you need any details please post again anytime.

Best wishes.
Niko