I was diagnosed with PsA, this time last year. It’s been a roller coaster, I’m sure you all can relate. Back in 2004, I had a car accident and suffered some nerve damage due to a herniated disc, or so I was told. Another doctor at that time, who I refer to as the quack doc, told me I had arthritis in my neck. I am now 37, at that time I didn’t really pay any mind to any of that or let it hold me back. Throughout the years, I would have numbness and pains here and there, dismissing it as nothing but from the accident.
Recently, I was flaring. Called the doc, increased steroids…we know the routine. Until I told her, I felt like my hands and feet were on fire, especially at the end of the day, I had a hard time even holding my arms up, and I think we need to change my meds, I was using ice packs to help calm the inflammation…
Ok, she tells me it sounds more like a nerve issue than the arthritis. Sends me for an EMG, which I had today. That doc tells me the test was normal, in the world of PsA and life in general, please tell me what normal is? though, she explained that if the EMG is normal I probably have Fibromyalgia and why my rheumy sent me to her.
I am so discouraged because every time I think I have it right, no matter what; this disease, my house, work, etc. something seems to set me back. I know i am better than last year without meds but I just feel like I can’t catch a break.
Hugs! It's difficult when we reach anniversaries of our diagnosis and still feel like we're not where we think we should be in dealing with our disease. I've had PsA since I was a child and a PsA diagnosis for almost 3 years and still don't know what normal looks like. I guess for me, normal is unpredictable health. LOL
You DO have doctor problems . I assume you went to a physiatirst for the EMG??? All an EMG shows is whether or not you have nerve damage. You don't assuming the test was normal. Not from herniated discs (which fewer than 2% do) and not from any other source. Now in the case of Fibro. an EMG is NOT normal Fibromyalgia is associated with a specific EMG pattern indicating premature discontinuation of the muscle contraction. Even more importantly there is a blood test for fibro.
However your burning feet and hands could be any number of things including inflammation. It could also be Grierson-Gopalan syndrome caused by low thyroid (often brought on by steroids. It could even be raynauds symdrome not at all uncommon with PsA
The point is whoever did the EMG is talking out of the side of their mouth........
Thanks Nym, yes just not having a good few days or months… Just thankful I’m not where I was a year ago.
Lamb… I should have known better. She was a physical medicine and rehab MD.
I do believe she wasn’t trying to scare me. I guess it would have been better if she didn’t say anything at all.
Another thought, she did explain that what I described is consistent with what her Fibro patients experience and mentioned the pattern. I will wait on what my rheumy tells me.
One thing you stated was steroid use. I have heard this before. My doc put me on steroids October 2012, tapered off, then went back on again in August. since then was increased twice. I just had blood work and everything was in “normal” range. I’m not sure if we looked at the thyroid but I will mention it to her when I see her again.
I think we all feel discouraged off and on with this disease. I know I do. You should read the discussion about musical joints. I'm feeling pretty good now, but it has taken 3 years to get all the meds right. If you just hang in there things will get better. Just make sure to tell your Dr. exactly how you are feeling each time you see them and which joints hurt this time. I used to feel that she would think I was making this up, but it seems new pains and swelling pop up on a regular basis with this disease.
I get burning in areas where my PsA is acting up. It's terrible I know.
I'm sorry to hear you're having to deal with this. I am convinced that most Rheumy's don't know the in's and out's of typical PsA symptoms. They look for all the text book stuff and forget other issues.