Can anyone help with advice on how to deal with soft tissue damage which seems now to be permanent

[KathinAyrshire]

My right arm has been in flare since Christmas Eve, the swelling has gone down on the hand but not the arm. The main trouble is it's my right hand and I am very, very right handed. I have not recovered my grip, cannot even lift a cup one handed, the pain is permanent, nerve damage on two middle fingers, they feel as if they have been scalded and to turn my wrist in any direction is excrutiating. I was wondering if anyone knew if there was a treatment to help to try and regain some use of my hand? Any suggestions most welcome.

[Hidden]

Kath - this post made me panic, before I got a grip (no pun intended). My own right wrist is continually painful, and hurts like hell to turn it - and it has been like this for about 3 months now. But there is NO WAY I am going to even think that this might be permanent and I don't think that you should be thinking that either - the flare you describe is not that long (many people have flared for longer and get full use of their joints back).

I am sure that the damage is not permanent. Do you have wrist supports? What you describe sounds like carpal tunnel inflammation and this can be treated. In my (non medically qualified) wisdom I prescribe ibuprofen and total rest for the affected wrist (people manage when they break things and you can too), I also prescribe a trip to your GP and possible some physio.

Sorry if this sounds like 'a good talking to' - it is partly aimed at myself. I have been putting up with the pain and not doing anything about it. It does get better if I rest - I think I just haven't rested it for long enough at any single time - as soon as it stops hurting I go back to my hobby which is photography - and carrying a big lump of a camera in my right hand.

We'll be fine!

[KathinAyrshire in reply to Hidden]

Maggie, many thanks for the reply, it is encouraging that it may not prove permanent,I do hope it doesn't. Your final paragraph sums me up (and you too!) the pain lessens with rest and off I go again using my right hand. I do have wrist braces for both hands, the left hand did exactly the same thing a year ago but repaired itself to some degree quicker than the right hand seems to be doing. I am not sure about it being carpal tunnel, does the pain of this go further than the wrist? The pain as I turn my wrist goes to the elbow.

I will try the ibuprofen, this might speed up the morning 'getting it moving' time and will try to rest it, but living on my own and self employed I may need a rain chek at times!!

We'll be fine kiddo!! Many thanks for taking the time to help.

[Tigerlily4]

Good answer from Maggie. I'd just add I've found with painful inflammatory problems - other than those directly caused by lupus - that the nasty little rogue cells will invariably latch onto and make the inflammation 100 times worse. In my body anyway.

[Melinda]

Physiotherapy may help. I had an infection in my left wrist. Once it cleared up, i had to go for physio for six weeks. It helped a lot, althouth i still cannot make a fist with my left hand.

[KathinAyrshire in reply to Melinda]

Dear Melinda,

Many thanks for the reply, if you cannot make a fist and therefore have no or lessened grip, have you any advice on gadgets for simple things like opening jars, bottles etc as both my hands are now losing strength.

Many thanks for the reply.

[Melinda in reply to KathinAyrshire]

Unfortunately not. The only aid i have ,is a rubbery thing for opening jars, i got from a disabled shop. I have to rely on other people to open bottles, especially those with child proof caps. When my husband was in hostpital a few years ago, i daren't unlock the back door, because i knew i wouldn't be able to lock it again.

Physio did give me some putty, a bit like playdo to strengthen my grip.

[KathinAyrshire in reply to Melinda]

I've got one of those rubbery things but now my hands are so weak and painful I can't operate it. At least my dispenser (she's part of the gp practice) now dispenses all drugs in packets as she knows I cannot open those infernal child proof things. I will never forget Christmas Day last year, I had finished putting the boarding kennels and cattery to bed and came indoors for Christmas dinner on my own, dinner well under way in the Rayburn and champers chilled from fridge, got the wire and foil off but couldn't get the cork out. Through the blue air I retrieved a bottle of white wine with screw top and between gritted teeth, forearms and the invaluable help of the dining room door jamb, got the infernal top off the bottle. I emptied the bottle as a well earned reward. So I suppose it comes down to where there's a will there's a way, on somethings anyway!

Best wishes

[Melinda in reply to KathinAyrshire]

Yes, i've used the door to open something or other.

[Tigerlily4 in reply to KathinAyrshire]

Referral to an Occupational Therapist is your best bet Kath. They're key in deciding exactly what aids will assist with your particular problems and will provide you with details of where the items can be purchased. If your consultant can't or won't refer you to an OT via the NHS I strongly recommend approaching one on a private basis. Well worth the outlay.

[KathinAyrshire in reply to Tigerlily4]

Many thanks Tigerlilly, I really can't be waiting for the next rheumy appointment for referral and would prefer to go on a private basis. Any advice on how to locate an OT for private consultation?

Regards

Kath

[Tigerlily4 in reply to KathinAyrshire]

I'll message you

[Sher78]

I have never found a treatment 4 this. I don't tend 2 swell up, my ligaments, muscles & tendons just 'go'. I personally just up my pain meds, try not 2 use my hands etc (which let's face it is pretty bloody difficult!) & let it 'run it's course'

[KathinAyrshire in reply to Sher78]

Dear Sher78,

I know we all respond differently to Lupus but how long, for you, roughly, does it take to run its course?

[Sher78]

after 19 years (with most of them being pretty problem free), in the last couple of years the tendon, muscle, ligament, bone pain is constant in my hands, fingers, wrists, ankles, toes & feet but varying in severity day 2 day. If I 'turn' awkwardly, my back, knees, hips etc can 'go' which generally can last 4 a day or up 2 a week or so but in all fairness I HAVE just come out of a very severe 2 year flare so hopefully it will all start 2 ease off a bit more.

[KathinAyrshire in reply to Sher78]

Oh Sher, a two year flare!! You poor thing, you have my unbounded sympathy and best wishes that you continue to improve, and there's me complaining of a two month flare, I feel such a wuz.

Best wishes

Kath

[Sher78 in reply to KathinAyrshire]

Oh God, u aint a wuss honey, we all have different tolerance levels! I get days where I'll b floored by something pathetic, it's just 1 of those things & depends how our bodies r doing at the time I guess.

Found a new thing 2nite. Although it's not caused by the lupus as such, it IS indirectly: I have discovered that I very well may have a hernia under my rib cage. Had a lot of surgery on my stomach, bowel etc cos of blood clots caused by the lupus & APS (this is 19 years ago mind) & I've had what is like a muscle protrude from just under my rib cage a couple of times now in the last year or so. It hurts like Hell but luckily, I can manipulate it back in place but it remains sore afterwards 4 a while. Went Docs 2day & forgot 2 mention it as it hasn't happened in such a long time lol! Oh the joys

[KathinAyrshire]

Sher, for goodness sake get back to the doc and tell them, it's sounds awful and dramatic, go and get it checked out at least!!

regards Kath