Newly diagnosed but still worried....

Hi Everyone,

I was so happy to find this forum as many times I feel like I'm alone in this and no one seems to understand.

In October 2015 I started having a slight bilateral tremor in my whole body as well as a feeling of internal vibrations and also some weird pin prick sensations all over. I got checked out by a neuro with an MRI, Lyme test, CBC, CMP, etc and everything came back fine.

about a month later I started having pain in my hands. A weird pain like it didn't necessarily hurt when I bent my fingers but more of a shooting, dull pain especially to the touch. My finger tips especially hurt and even when I tapped them on a hard surface it was like my nails hurt as well. about three weeks after that I started getting migrating pain everywhere that would move by the hour. I wake up some days feeling completely fine and very minor pain in my hands but other days I wake up and feel it everywhere. I have 1-2 bad days per week and I notice that the pain (and shaking) are much more prevalent when I haven't slept and am very tired.

I went to a rheumatologist who tested my ANA and rheumatoid factor as well as all of the more specific lupus tests, ESR, and parvovirus. Everything came back normal except for a low positive on the ANA (1:160). The doctor diagnosed me with fibro since I have pain in many of the 18 tender points and felt that my symptoms are very typical of fibro. I started acupuncture which actually seems to be helping quite a bit however....

I can't help but wonder if that's what is really going on here. My mind still goes back to that positive ANA. I know it a very unspecific test and can be meaningless without additional supporting symptoms however I just keep thinking that this is lupus. My doctor says that it is not and, I want to be clear, I don't actually feel sick. Although annoying, the pain hasn't really impacted my life and I think the worst part of all of this has been the fear and anxiety that something more serious is happening to me.

If anyone can offer any insights from your own experiences or if this does in fact sound like fibro (I know they're not medical opinions) I would really really appreciate it.

As a person with Lupus I can tell you ANA is only one of the 11 indicators of Lupus and you need 4 of the 11 to have it.

So you can have positive ANA, but not have lupus.

Your symptoms are nearly exactly what I went through, even down to the tests. Hand pain, numbness in my fingers or palms, pins and needles in hands and wrists, muscle spasms, I kept dropping things or couldn't open jars. I was crashing ever few days and sleeping 12 hours or more.

I was also tested for carpel tunnel but everything came up negative, over and over again. I even had a bone specialist tell me I was disgustingly healthy.

The Rheumatologist I'm seeing right now is only really concerned with the bone damage and swelling joints. Most of the hand pain went away when I started Mobic. I'm taking Flexeril for the muscle knots and tightness in my neck, back, and shoulders. Stretching is a must.

I still have joint pain and the occasional tremor feeling or shooting pain but that only flairs up when I utterly burn myself out. I'm still hunting for a doctor willing to address the Fibro in my area but things are slowly getting better.

You're not crazy and I know how helpless it feels to know something is wrong but the randomness of everything makes it sound ridiculous when you list everything out.

Yes, Rheumatoid arthritis was ruled out. The current diagnosis is non-serum reactive arthritis since I didn't flag for anything beyond massive levels of inflammation proteins and a slight elevation in ASA and one antibody test which my doctor said was inconclusive but I have visible swelling in my hands just no bone damage.

Mostly I was diagnosed with FM by the tender points. Even a light tap to one can send me into half my body locking up with muscle spasms and tightness. I'm constantly fighting how tight my back and shoulders get.

Couchtater

Do you mean you were having shaking from the problem with the C6 vertebra? Mine has actually gotten better since the beginning but I will definitely mention it to my Neuro. I only had an MRI of my brain which came back clean.

Does anyone know if it is common for fibro to start in the hands and then spread?

Has anyone here had a low positive ANA and been diagnosed with fibromyalgia only and not any other autoimmune disease?

Hi All,

I think everything comes second,

we usually ignore the first ones

we just see whats happening to us but do not concentrate,we ignore little things which later become the primary cause of the problem,

THE BIG THING

if you can, tell me a little about your problem in detail

Might i can suggest something.

Regards

Post Edited By Moderator (Sherrine) : 3/1/2016 9:29:26 AM (GMT-7)