Any tips on pain mangement. Have been... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Any tips on pain mangement. Have been told I have scleroderma and now suffering with pain in thumbs, wrists, shoulder, neck very bad.

newton profile image
6 Replies

The neck pain is making me feel sick at times & reduced head movenment. Taking tablets to help as last resort as don't want to unset my gastro problems but relief is only short lived. Have a hectic job, (on my feet most of the day involving a lot of lifting and carrying) which sometimes helps as I can work through the pain to a certain extent but at the end of the day I am so tired. Any advice welcome.

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newton profile image
newton
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6 Replies
wartsandall profile image
wartsandall

Despite taking regular strong analgesia I still suffer from widespread aches and pains. I have been awake since 5am because I was disturbed yet again with painful shoulders,hands, wrists and knees. My fingers and hands are bent and really stiff. I try to gently flex them to help loosen the joints. I am really fed up with the muscular pain and weakness in my upper arms and thighs, nothing helps !!!!!! My GP has at last decided that I need a muscle biopsy and has referred me back to my rheumatologist. Happy days !!!!!! I'm so fed up because I can't do the job I love any more !!!!! and my employer has done nothing to help !!!!!! Rant over !!!! I'm really sorry Newton that your pain is so bad, I don't think anyone understands how we all feel xxx

SandraMarie profile image
SandraMarie

There really is nothing you can do about it, just have to deal with it as it progresses, and no it's not easy, but most importantly don't give in to it. Try and keep as active as possible, it really does help. I can usually hardly move when I get up in the morning,but have to force myself into activity, even if that's just clambouring up the stairs, and gradually stretching everything out.Just be gentle about it, mine spine feels like it's going to crack sometimes. Really no point getting angry about it,try and conserve energies. :)

zenabb profile image
zenabb

I suggest you see a physiotherapist. It helps with some things. Have you seen your doctor? Mine suggested a small dose of amytriptoline because he said that the pain could be generated from the brain. It works in that it takes the worse off.

Jessie122 profile image
Jessie122

Hello,Wartsand all. I have a problem with my neck that gives the same sypmtoms as yours but a different cause. I have Ostioarthristis and a bone graft into my neck. This left me with nerve pain and muscle spasm that like you restrictis my neck movements. There are several things that help me. Acupunture relieves symptoms but not permanently. You need it weekly and it can get expensive. It is not available long term on the NHS.I have had lots of physio with no improvement.

I see a pain mananagment specialist after a referral from my GP and he injects the trigger points for the pain with local Aneasthetic and a Steroid. However some of the steroid does get into your system but very little. I have no side affects from this and it is the most successful. I can go for three months without going for futher treatment.

Another help is my TENS Machine. You can look this up on the internet. You do not need a fancy expensive one shop around on the internet. You need one with two terminals. You can use this even when working t relieve pain.

I also love my Tempur neck pillow and would not be without it. It is specially shaped to support your neck and I find that there is none of the other memory foam pillows as good as Tempur. Available on the Internet. Dreams bed shops have them you could pop in and lay down and try a pillow?

I also use various masage gels and creams on my hands and wrists and my husband uses the Gels to massage my neck. Your GP would probably prescribe this if you ask but it might irritate your skin?

Putting your hands and wrists in warm water to help get them moving helps. You could then massage them with warm Olive oil or any oil suitable from a health shop if the Gels and creams are not suitable for you.

Sometimes you just have to adjust your life but the pain should not rule your life as it gets very depressing.

I am sorry to hear you are having these problems and hope you find a solution. Let us know how you get on.

Best Wishes

Jessie 122

wartsandall profile image
wartsandall in reply to Jessie122

Hi Jessie, thank you for your sound advice, I'm going to try your suggestions and see if they helps. I think I'm beginning to allow myself to become a victim of this disease, you're right in saying that you can allow it to rule your life. I am concious that I am beginning to feel helpless and this is making me very tearful. The last thing I need at the moment is to get into a rut, feel sorry for myself and sink into a depression. I am having an iron infusion next Monday. I'm hoping it will give me more energy and help motivate me into being more active. Now my GP has referred me back to my rheumatologist for a muscle biopsy, hopefully I might get a definite diagnosis and the right treatment. I'm going to treat myself to one of those tempur neck pillows. I've just seen them on the internet and look so comfy.

I'll definitely let you know how I get on. Take care x

Jessie122 profile image
Jessie122 in reply to wartsandall

Thank you and good luck with the biopsy.

Best Wishes

Jessie122

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