still undiagnosed

No new news from rheumy. He was hoping that I would either be really well with the prednisone or that it did nothing. Unfortunately I was in the middle. I feel that it may have helped but some of the burning, itchy muscle like pain is easing its way back in. It goes from elbow up around shoulders and neck and back to other elbow. Its not terrible but he didn't feel that the prednisone was the key because of this. He is going to let me stay on it, as is, for another 6 weeks, do more blood work and then will go from there.

He does say that about 40% of the time the blood work will  come back negative even though there may be some issues. (Sed rate high 47 but all inflammation tests came back in range or negative.)

So, still undiagnosed.

I am very deficient in vitamin D and I know that can play a big part in muscle pain but he didn't say either way his opinion on that. I also added the symptom of the very dry eyes/mouth and other regions. He says that one way or another, given time, he will figure it out. So, I at least know that he is not going to abandon me or leave me without meds.

 He is such a good doctor. I really like him and hope to never have to change.

It looks like your doctor is trying everything to figure this out and that is good.  Some doctors, by this time, would start saying it's all in your head.  Yikes!  But perseverence does pay off.  I hope he figures out what is going on with you very soon.

 

Sherrine

MsCrowbar,

It is so frustrating when you don't have a diagnosis because you don't know what to think and I think that we fear the unknown. But try to relax and know that you have a good doctor and he sounds determined to find answers. It sure does sound like fibro to me, but I am no doctor. Your pain sounds like mine being mainly throughout the shoulders, neck and back. I have osteo arthritis so my joints hurt too at times. I fear there will be more pain as I get older, so I try to move around as much as possible. The more I sit, the stiffer I get.

Keep us posted on how you are doing and what the doctor says. I hope that you have a good evening.

Hugs, Karen

Hi Denita,

I'm sorry you are going through this.  I hope that soon it all gets figured out.

I recently went to a rheumatologist for the first time since my diagnosis.  I had been using my internist for treatment and management.  Anyway, I went to her to make sure nothing else was going on because there were some strange symptoms - one being burning mouth syndrome.  It seemed strange for someone my age to have it and there was no dental or medical cause that could be seen.  So the rheum tested me again for alll autoimmune and I came up negative for everything.  She said that based on my burning mouth and dry eyes there was still a chance I could have Sjogrens - just a very mild case.  She wanted me to think about getting a lip biopsy done as that can sometimes confirm Sjogrens even if it isn't showing up in the blood work yet.  Maybe something to ask your Dr. about?

Hang in there and enjoy your grandson's 3rd birthday party!

Sarah, I am finding out 9 years after gastric bypass surgery that there are many issues I will be dealing with for the rest of my life. One is malabsorbtion. Apparently my body used up all the storage of b-12, iron and vitamin D. So, I will need huge supplements of iron and vitamin D along with b-12 shots for the rest of my life. There is still no guarantee that this will work. Even though I have been on iron for several years my numbers still drop for no reason. My b-12 levels are normal low even though I get a shot every month. And, now, Vitamin D is going to be a problem. Last year my pcp checked it and gave me the usual therapy, one D a week for 12 weeks. Apparently this did not work. Now I have to take 3x a week for 12 weeks and then be retested every 3 months to make sure all the levels stay in range. I guess they just don't know how things are really going to be years down the road until symptoms start rolling in and 2x2 are put together. Would I do it again? YES, but I would be more diligent in my follow-ups and blood work.

One thing I did notice though, several people on here say that huge doses of D3 is best for fibro/aches and pains. My prescription bottle says D2?? Any comments on that? I was kinda hoping that the D would take some of the aches and pains away and I will be able to ween off the prednisone. (on it for the high sed rate)

Thanks everyone for being here to sound off on. Hope everyone has a wonderful weekend.

CynthiaBlue,

Doctor has finally diagnosed me with Rheumatoid arthritis with secondary Sjogrens. He believes I still have the fibro too.

The meds are finally easing the all over aches but the exhaustion is now an issue. I can force myself to get up and move (actually feel better when I do) to help with stiffness but there is nothing to help the exhaustion. I have the desire to do things but no ability. I do go to work everyday and I do take an evening walk with my grandsons but that is about all.

I always felt good about myself because even with fibro I could still function, entertain, work, shop but make a few adjustments on how and when I could do those things. Now, lately, I just don't have the gumption. I surely hope this passes soon. I don't like myself this way.