Still officially undiagnosed. Doctors leaning towards Fibromyalgia?

[undiagnosed123]

I am a 27-year old African-American female.

I have had an undiagnosed chronic illness for 7 years. The first symptom was skin rashes and changes, second was chronic infections, next was severe fatigue, then sensitivity to light, muscle soreness, severe headaches, then convulsions/tremors.

All of my blood work has come back normal besides chronic low potassium and occasional low Vitamin D. Lyme tests have also been mildly positive. But only band 41 has come back positive. I have no co-infections and don't remember a tick bite. I've undergone treatment for Lyme with antibiotics which have only made me feel better for a time, no herxheimer reactions.

At times I will test positive for H. Pylori. but that's it.

I was put on a course of prednisone for a sinus infection, and that was the first time I was able to be up and about after months of being bedridden. I was able to breathe better, less pain, my skin cleared up. I  felt so much better. Doctors have dismissed it saying that everyone feels better on prednisone. Ok, well it was a major positive for me, but of course I don't want to be on it in for too long with it's serious side effects.

Now in the last year, I have had an increase in widespread pain, and mysterious swelling. The swelling started in the left side of my stomach, then both sides of my neck, knees, ankles, and face. Increasing stiffness is also a problem, and the pain is getting worse and more frequent. Especially after activity. I have a red rash that looks similar to a butterfly rash on my cheeks and bridge of my nose that turns scaly when it fades.

My periods are painful and heavy, and I feel 10x worse when I'm on it.

Recently I was placed on metoprolol because of my fast heart rate (130) at its worst. I was having trouble breathing, minor dizzy spells, feeling faint. I have done an ekg and a stress test and a cardiologist has said that my heart is fine. I have also noticed that on metoprolol the severity of my tremors/convulsions has decreased to barely noticeable. They also stopped when I was on prednisone.

Also I am ana negative, but an antiextractable nuclear antigen test showed rnp and smith antibodies but they were <2.0. Also my sed rate and rheumatoid factor are both normal. The latest test they have done is for CRP. Which at this rate will probably come back negative as well.

I've seen 2 rheumatologists already one for disability purposes and another once the swelling started. The second rheumatologist said he didn't see any swelling, or anything rheumatological so I have now started taking pictures to document it.

I've tried different antidepressants that also seem to work for Fibromyalgia, the latest one being Cymbalta, but all they have done is make me nauseous, dizzy, and fatigued. They don't do much for my symptoms.

I'm so confused and I can't seem to get many answers, and doctors are reluctant to do much in the way of treatment without positive blood work.

Any suggestions to what my next steps should be?

[sara12345]

Sorry I have no great advice, except that lymes disease can be difficult to diagnose and does cause horrendous symptoms.

As for the Cymbalta, try some of the other fibromyalgia approved meds.  I personally take Trazodone (not FDA approved for it as I know), but it has helped me tremendously where none of the FDA approved meds were tolerable for me.  But definately take it at night as it's a great sleeping pill as well.

Just wanted to say that I am so sorry to hear about all your pain.  I really feel for you and really hope that the medical profession can finally help you.  

Don't give up even though it's possible as I found out with my severe 24/7 migraines on top of my fibromyalgia and stroke pain.  At least find another anti-depressant which can help you with your mood as well as all anti-depressants are pain relievers to some extent.  But the ones approved for fibromyalgia were all toxic to me.

Wish you the best.

Sara

[TheLightSeeker]

Hi undiagnosed123

41 band. flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT necessarily specific to Lyme (i.e, other spirochete diseases have flagellas), but does not rule it out either!

Did you see an LLMD for this? Lyme disease diagnosis may take years,
following a series of false negatives. IgeneX is the only reliable Lab and Golden Standardard for LD and co-infections. Which one did you use?
You seem to have all the symptoms of LD!
And by the way, short abx treatment is not effective for LD in most cases,
the controversial  recommendation by IDSA. That is why you must deal with an LLMD. Rheumies don't have a clue and they incorrectly follow
CDC guidelines, which are not for treatment purposes, but for surveillance
and data collection only.
Please post again.
Wishing you well.
Niko

[undiagnosed123]

I can try that, and see what they say. Thanks

[undiagnosed123]

Yup. I 've had several ana tests done and they've all come back negative.

[msnova74]

I had a long journey to diagnosis. I would ask your rheumy if he can have orders written up so that when you have a bad spell you just go in and they draw blood right then.

I was eventually dx with MCTD

[tstarshine]

Have you been tested for Lupus? An ANA test? The face rash sounds like a symptom.