Hi, is there anyone else with raynauds and scleroderma that suffers with tender, aching muscles in the arms, hips, and thighs ?

I wake every night with pain, my hands and knees are also stiff and painful. I am taking so many pain killers and apply analgesia gel before getting into bed. I was recently seen by my rheumatologist who told me I have wide spread non inflammatory pain and to continue with my pain relief. I'm not really satisfied with my management and standard of care and would be interested in having a second opinion and further investigations. Does anyone have the same symptoms ? What other tests are available ? And who do I approach for a second opinion ? I feel very sore, and frustrated because no one seems to listen x

9 Replies

  • There is nothing you can do I personally wouldn't recommend all the painkillers, as I feel they numb you to the point that you don't keep even minimal activity in the night,thereby allowing the stiffness to worsen. I can hardly move every morning, but just have to force myself up, and gradually a level of mobility comes back.x

  • I found that my legs, knees and hips were getting stiff and painful, also getting tendon friction rubs. I mentioned this and they booked me an appointment with a specialist rheumatology physio. I now do exercises every day and it is much much better. If I don't do them for a day I can really tell the difference. Perhaps they could refer you?

  • I am struggling with the same thing, mostly in my hands, arms and legs. I try to stretch every day and still I wake up in pain and barely mobile. I feel like I'm fighting an uphill battle every morning when I try to get up. My doctor was not to helpful on what to do.

  • I went to the physio. She said that she could only help with one thing at a time. She gave me exercises ad gradually introduced the other pains and more exercises. It takes 15 minutes each morning and evening. The pain has gone but I have to continue on for ever. No pain killers.

  • Thank you so much for all your kind advice. I have just finished my last session of hydrotherapy at my local hospital ( each person is given 6 half hour sessions ). The hydrotherapy has been beneficial but, leaves me aching and very tired. I try stretching exercises each morning and as the day goes on I feel better, but it's the disturbed sleep in the early hours and the pains I have when I try to move my position that are frustrating me. I also have weakness in my arms and I find it difficult doing my hair and lifting things. I have explained all this to my GP who has honestly admitted he doesn't know what to suggest. I left the surgery today with another prescription for pain killers.

  • I'm the same, wartsandall, in pain all the time sometimes don't get to sleep until after 4/5am and when I try to lie on the other side I'm in pain and it wakes me up. I too have raynauds and scleroderma + fibromyalgia, Primary Biliary Cirrhosis and arthritis. I take co-codamol, tramadol and acoxia for the pain in joints and muscles. I couldn't do without those painkillers. Did go for physio but she made me feel that it was all in my head - already suffer from depression so I'm on two different anti-depressants so last thing I need is someone inferring its all in my head. In a away I wish it was then I'd be able to stop wearing the brace on my right arm and the crutch I always have to use. (:-)

  • I was like this up until 2-3 months ago.I started having massages as my muscles were seizing up. has worked wonders for me.the amount of painkillers i take now is tiny.yes I still get some aches and pains but nothing compared to the pain i was in before.

  • Absolutely, pain in legs, hips, and thighs...I try to stay as active as possible taking care of my home...etc; don't get out much. Yet, I still am very sore in my muscles every day. Have to take pain meds to be able to function... and Vitamin D 50,000 iu's twice a week (prescription) helps as well.

    Blessings... hope you feel better!

    Debra :)

  • Hi Debra, thank you for your reply, I am exactly the same. I also take Calci Chew D Forte for vitamin D deficiency,,,..I tried going along to my local pool last weekend for a gentle swim, I also spent 15 minutes in a lovely warm spa pool and had 10 minutes in the sauna. I felt like I was glowing, however the last 3 days have paid for it, I've felt awful. My muscles are hurting even more now and I am so tired and weak I can't even comb my own hair. I am certain that the muscle aches and pains are part and parcel of scleroderma even though some rheumatologist would argue that it is fibromyalgia. I am still taking regular pain relief, I have tried to stop them but I can't manage without them.

    Hope you feel better too x Linda x

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