Does this happen to others?

I've had lupus for more than 15 years...main problems being lung fibrosis, fatigue, APS, raynauds...but for last 18 months developed RA symptoms which got worse and worse, and in last 5 months at least been terrible...not just joints but also seems muscular, total weakness in arms and legs, excruciating pain not just in first part of day but lasting till 6 in evening. this meant a I have not been able to do stairs without real difficulty a lot of the time, and yesterday I could not get into my car without the pain making me cry. so far...pretty familiar to lots of you I am sure. (Meanwhile on prednisone since 2007, hydroxy, and was on mycophenalte for years but they found it was not having any effect about a year ago, so stopped it and the plan was to start methotrexate or cyclophos, but I have had so many chest infections my wbc has not allowed me to start this month fingers crossed)... But... Explain I woke at 5am, not unusual as often pain does thwt...but today I woke, jumped out of bed and could walk, bend, go down stairs in normal way and seem an entirely different person. yesterday I could barely type for nothing hurts at all! Obviously I am delighted...but I just wish I Had some explanation for this. I would be really interested to know if anyone else has had things get better so dramatically and mysteriously as they can get bad?!

8 Replies

  • Hi dmptree, yes, it does happen, every day. I was put on Methotraxate but sadly didn't get on with it, I slowed down even more and my breathing wasn't good so they took me off it immediately and left me on predisolone. Now, months later, I am only on hydroxychloroquine and need 3 blood pressure tablets. My Myositis is so bad I asked the Dr if I could take anti inflammatorys but he said no due to being on all the blood pressure tablets. It wouldn't be good for my kidneys to have both. Most days I am very slow and struggle with stairs, but some days are definitely better than others. You are not alone! You seem to be describing me. But I do however have constant stabbing pains in my fingers that never go, at night I take progabalin to take the edge off. the Rheumy said that it is unlikely I would ever go into remission and be grateful I am stable. So I take every day as it comes and enjoy the good days. I hope you manage to stabilise soon! Take care

  • Hi Ladybird

    So sorry to read of your muscle problems as well as a lot of other things!. I've found steroids have helped my muscle aches and weakness and wonder if you could go back to them?.

    Could I also ask you what dose of Pregabalin are you on and how do you find the drug?. I'm about to try it again at the lowest dose and build up after first taking it at the wrong one and had horrendous side effects. Many thanks X

  • Hi Misty, my Rheumy isn't keen on me going back on steroids so just going with the flow. I'm on 75mg and the side effects aren't great. I feel quite groggy in the mornings but I am going to lower the dose and take it a little earlier in the evenings to I can at least focus properly the next morning! It's ok really, I can be quite tough but it is so good having a proper nights sleep with pregabalin! X

  • Hi Ladybird

    Thanks for your reply. It's a tough juggle for us risksvbenefits isn't it?. Great to hear you have a good night's sleep with pregabalin, could do with that!.

    Take Care.X

  • Hi, RA is my main Lupus symptom (amongst others) and have had RA for 20 yrs, the Lupus diagnosed 10 yrs ago. Different joints flare up on a weekly basis. I wake up saying, 'which joint will it be today' ? I can be housebound, but deal with it. In 2/3 days I'm OK again, until next flare up. No good moaning, I keep as busy as I can and get on with life

  • Hi dmptree, I am exactly the same as you. I too am having lots of muscular issues and weakness plus the usual lead legs. Getting in/out of the car is an issue too - I get in then have to lift the other leg in to the car. One day I can barely walk more than 3 steps, trying to put water in the kettle takes both hands to hold it and is still difficult. Then I can have a day when I can do things normally but it can reverse back the following day. I am on methotrexate, Plaquenil and steroids etc. I find if I have slept better than usual (always wake up once/twice) I seem to have a better day. Stairs are an on-going problem and I can no longer use an escalator to come down if I am out. They go too fast for my movement. I change from extreme to extreme and I really don't know why. I hope you are continuing to have good days. Take care x

  • Thanks loopy-Lou, it is good to know being this weird is normal!

  • Hi , I understand all those muscle aches, not fun. No two days are the nights my arms really hurt like cramps, my physio gave me light gloves for circulation to wear in bed, I feel it's helped as sometimes holding a hot drink is difficult. I'm on prednisolone, azathioprine,plaquenal . You take care.

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