stiff joints

[Clangerscat]

Hi all a quick question , much as I am enjoying the warmer weather and not having to wear gloves and am finding I’m having a lot of stiffness and pain in joints in my fingers! Anyone else suffering with similar? Just wondering if it’s the hot weather or progression in the scleroderma in my hands.

[Kilncadzow]

I had scleroderma in the 1970s and 80s and my hands were badly affected. Both hands were really “clawed” and were painful. After treatment with Penicillamine which doesn’t seem to be used these days, my left hand is completely normal and my right hand is only slightly bent.

[Clangerscat in reply to Kilncadzow]

Wow that is really interesting,thanks for your reply.

[nanagill in reply to Clangerscat]

So sorry. That reply was meant for Kilncadzow. Technology is not my forte 😁

[nanagill in reply to Kilncadzow]

Hi, you are the first person I've come across who has been treated with Penicillamine. I have been taking it since first diagnosed 14 years ago. It worked wonders for me too in the early days. Are you still taking it? 🌻

[Kilncadzow in reply to nanagill]

Hi! Interesting to hear from someone with experience of Penicillamine. I was put on it around 1977. Started on a low dose which was gradually increased. It worked wonders for me. Once they thought it had done all that it was going to do they gradually weaned me off it - that must have been around 1980. I haven’t taken it since then and there has been no recurrence of the Scleroderma.

[Buttsy]

morning,

My hands are painful and definitely worse lately,y GP has already requested my next rheumatologist appointment be brought forward on the grounds of worsening hand problems, mine are also going dead in the night which is very concerning.

Like you I was wondering if it is progression , but when it’s warm they always swell and go tingly.

[Clangerscat in reply to Buttsy]

Thanks Buttsy, I haven’t been to the doctor yet but I’m due a follow up with my rheumatologist in the next month or so. Have also been waking up with hands feeling numb. Hope you get answers soon take care.

[Buttsy in reply to Clangerscat]

You too Clangerscat,

It does sound very similar, good luck to you too

[LilyInTheSun in reply to Buttsy]

Hands going numb at night can be carpal tunnel syndrome. This was one of my first symptoms of scleroderma, along with swollen fingers. I believe it's to do with the thickening of soft tissues and inflammation which reduces the carpal tunnel in the wrist and puts pressure on the nerve. I had surgery on both wrists to release the tunnel, and haven't had symptoms since (over 13 years ago). It was a day procedure each time, and they lined the minimal scar up with the lines in my palm, so you can't really tell. Might be worth asking your rheumatologist about this. Take care

[Buttsy in reply to LilyInTheSun]

Thanks,

Yes , my GP said possible carpal tunnel and I will mention it when I get a Rheumatologist appointment .

[LilyInTheSun in reply to Buttsy]

If it is that, then at least it can be treated and resolved. It's not nice to deal with in the meantime though - you have my sympathies. You can buy splints that keep your wrists in a set position at night, which helps prevent the symptoms until it's treated. It's not ideal - I found I'd wake up to loosen the straps on the splints - but it did help relieve the symptoms. I hope you get some answers and help soon

[Buttsy in reply to LilyInTheSun]

Thank you , I will consider that in the meantime, funnily enough I was just typing my reply when I got a phone call from the hospital to confirm a Rheumatologist appointment next week so hopefully he can help.

[LilyInTheSun in reply to Buttsy]

That's good news. I really hope they're helpful.

[cowhide]

If you look on the SRUK youtube channel there are some videos of hand exercises to try and keep hands flexible. Hope they help.

[dordle]

I thought it was my imagination!! My neck and tops of my shoulders have definitely been more painful during this hot weather. I do hope your hands ease soon.

[Puffins17]

Hi, I've also experienced the same increased stiffness in my joints, especially in my hands ,over the years , when the humidity is high. Just to mention ,having being referred by Rheumatology, I attended the Osteoarthritis Hand course at the Occupational Therapy Department Southmead Hospital and found this very helpful. Unfortunately the final review session was cancelled ,as we we went into lockdown ,so I missed details re progress. May be worth your asking if you could be referred to O T.

[Clangerscat in reply to Puffins17]

Thanks for your reply, I am waiting to see OT. Good to know you found it helpful. Did you have any hot wax treatment? I’ve been considering buying myself one.

[Puffins17]

Pleased to hear you've already been referred to OT. When I attended the 4 the 4 group sessions I asked about wax treatment as my mum had ,had that treatment in the past. I think they said they don't do it now. Possibly it's a matter of being more mindful about infection if same wax is used for a number of patients. I don't know. I believe you mentioned that you're a patient at SMH. If so, it might be useful for you to email them on [e-mail]. for their advice prior to buying. Good luck with it all.