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Reply: OT one last blonde joke

I love this. My daughter is blonde and we pick on her all the time. Thank...

Posted by livingwithlupusfor37years

6 Replies | Reply | Watch This DiscussionReport This| Share this:OT one last blonde joke I love this. My daughter is blonde and we pick on her all the time. Thank...

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Overlap syndrome - negative enzymes

I have not posted in quite some time. I have a question for anyone out...

Posted by livingwithlupusfor37years

I have not posted in quite some time. I have a question for anyone out there but maybe one of the experts can answer it. First I will give you a little hx of my dx. I was dx w/lupus when I was 12 - 38+ years ago. Was relatively stable for a few years. Flared up in 1987-88 and have not been really stable since then. I have sxs of lupus, scleroderma, sjogrens and ?myositis. I also have +antiphospholipid anbx on coumadin for multiple tia's, PE and miscarriages. I have osteonecrosis bilat w/ R total hip replacement, needing L hip in near future.I also have fibromyalgia, anxiety and depression. My meds=prednisolone, plaquenil, methotrexate (just 3wks ago-prior to that imuran 175/d), duragesic TD 75mcg/48h, coumadin, synthyroid,provigil,folic acid,wellbutrin,cymbalta,oxycodone for breakthrough pain, My biggest problem now is muscle pain and weakness. About 3 yrs ago, I began having muscle pain w/2 + muscle enzyme tests and neg, muscle bx. The pain at that time was not nearly as bad as it is now and I really didn't have any weakness. Now I can hardly move d/t the pain and weakness. The pain in my calf muscles feels like I have worked out w/o stretching and they also burn like a hot iron is on them. I have weakness in my hips to the point that I can't stand up without help or pushing myself up with my arms. Most recently I began to have pain in my neck, shoulders, and arms. With marked arm weakness. At the same time I began to have bilat. wrist, elbow and knee pain. I now have a swollen area on the outside part of myÂ L wrist at the bend of my wrist that goes all the way up to my little finger. In the a.m., this area is even more swollen, with swelling also in my fingers bilat.The other wrist is sore but no real swelling noted. My L knee is also swollen w/difficulty bending it in the a.m.and pain/tenderness noted on the medial side. The pain in my neck, shoulders and arms is in the muscles but also it feels more like tendinitis - w/sharp pain, similar to pleuritic pain, on some movement. I was dx'ed w/ tendinitis about 5 mos ago in the L arm. I also have very marked fatigue to the point that some days I sleep 18-20 hours - and when the fatigue hits, no amt of anything will keep me awake, my speech becomes very slurred, I get dbl vision and if awakened I make no sense when spoken to. Most days I feel to tired to do anything - even eating sometimes is too much. I sometimes go a week or more without getting out anymore, though I am trying to make myself get out more cause my husband was afraid I was becoming a recluse. My biggest problem though is the pain in my muscles. My MD thinks it is myositis but my muscle enzymes are neg. He says that this may be because of "burn out" (?). He said sometimes there comes a point where the muscles just don't put out anymore enzymes. I have tried PT but that only made things worse. About 3 weeks ago, he dc'ed my Imuran and started me on po Methotrexate 1 x week. It seems like it may be working as I am feeling some better.But I also have a pattern of getting better then getting worse again and so on. I called his office and asked about a CT scan that would show the areas of infammation in my muscles but have not rec'd an answer. My question isÂ - Could this still be myositis despite the neg enzymes? Any help would be greatly appreciated. I feel like sometimes I am just going crazy.If anybody out there has similar problems please reply back. At one point, I seriously considered using a walker to get around because I didn't trust my legs to hold me up.By the way, this pain/weakness feels nothing like my fibromyalgia pain.Â Also, I know lupus doesn't usually cause joint deformity, so could what I am experiencing now be RA in my joints - as I have also noted some add'l deformity in other joints of my fingers.Â My younger sister has RA that has been refractory to all treatment. Again, please anybody that may know what is going on please reply. I have some other issues, but I will discuss them separately.View Thread

Posted bylivingwithlupusfor37years

2 Replies | Reply | Watch This DiscussionReport This| Share this:Overlap syndrome - negative enzymes I have not posted in quite some time. I have a question for anyone out...

Reply: 10 Daily Habits to Reduce Chronic Pain

I so agree with you. The gym is the way to go. About 3-4 yrs ago, I was...

Posted by livingwithlupusfor37years

16 Replies | ReplyReport This| Share this:10 Daily Habits to Reduce Chronic Pain I so agree with you. The gym is the way to go. About 3-4 yrs ago, I was...

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