New here with questions

Hi everyone, I am a newbie with no diagnosis yet. I have been seeing a rheumatologist for a few weeks now. Started out after Christmas with a downhill course of weakness and muscle soreness (upper arms). Eventually could not get out of a chair, bed, or off the toilet by myself. Both knees were swollen and painful. I also have fibromyalgia, so was not sure at first what was going on. My regular M.D. put me on Prednisone 60 mg/day for 5 days. I did remarkably well and by day 2 was able to get up again by myself.

However, on day 6 , off the Predisone, I crashed. I described it as taking a nose dive. So they kept me on 40 mg/day until I saw the rheumatologist a couple of weeks later. I have a nice doctor, but he is not sure what is going on with me. I fit the picture of polymyalgia rheumatica (I am 63) except that I have required high doses of Prednisone and my sed rate is normal. My C-reactive protein is elevated and my Rh factor is slightly positive (they re-drew blood yesterday to send to Mayo Clinic).  I am on tapering Prednisone. Now on 25 mg/day for 2 weeks. When I saw the doctor this past Weds, I think he was leaning more to the diagnosis of RA, but I do not fit that picture exactly either.

My question. The main symptom I have now is extreme fatigue which is much worse in the afternoon. I cannot even walk the few feet from the living room to the bathroom without my heart rate kicking up to 104-112 and I feel breathless. It settles down after a minute or 2. I am wondering if extreme fatigue can be the result of the Prednisone or is it more likely the disease (whatever that turns out to be)?  My (old) painful joints are returning, probably with the Prednisone reduction.  Also, the morning is much better as far as the fatigue. I am able to do a few things, like short errands. But I do not try to do anything in the afternoon.

Does this sequence of events seem familiar to any of you who have been diagnoses for some time?

Thanks for your response.

I have had the FM for many years, though not as bad as many people have it. I have been controlled on Tylenol with occ. use of Darvocet (now gone!). This recent event was nothing like I had ever experienced with the FM.

Yes, I have a nice family practice physician in a small clinic. One of her collegues sent me to the E.R. on 12/31 because I was so breathless and weak. They thought I might have Guillon Berrae (I didnt) or a blood clot in my lung (negative lung scan). The E.R. sent me home without anything, but I did get in to see my regular M.D. the next day and she started the Prednisone.

I have been told it often takes a long time to come up with a diagnosis and I am sure all of you will verify that the waiting is hard.

Thanks Jo. He already talked about getting a bone scan. I know it is not painful, but I am not looking forward to having to ly still for an hour or more, so I am hoping to avoid it. Like others I read on this forum, I am on Tramadol 50 mg, which I take only at night. I really thought Darvocet N 100 was much better for the pain. Though I took it rarely for the FM, it did work when I needed it. Learning the slang on this forum. I think my "Rheumy" is going to try me on some different medications pretty soon. I am grateful to have a (Rheumy)PA and a Rhemy that I like! He says that all of his patients are a puzzle and it takes a while to put the pieces together. That actually made me feel better. Thanks for listening.

Oh, thank you so much golitho! I have been wondering if the tiredness was related to Prednisone since it does list muscle weakness as a side effect, though not a more common one. I have felt like I have had a "flare" of something. When this first started, I described it to the family as feeling like a toxin invaded my body. Kind of went downhill quickly. I have advanced osteoarthritis in the right knee and wear a brace to walk distances, but it has never kept me from getting up. When both my knees were affected and I could not get out of bed without my husband helping me, I was really teary. I could not even walk the first few steps for a few seconds, but had to hold on to him. It scared me. I was so happy that the Prednisone worked right away, but I know I cannot stay on high doses of Prednisone. Thanks for the advice about resting. I have worked FT most of my life and kept busy. It is hard for me to rest, but in the afternoon, I have zero energy so must rest.