Pins & Needles in conjunction with skin issues on hands
Posted 05 May 2010 - 01:34 AM
I have only recently been confirmed with limited systemic sclerosis (lSSc), but I have seen the changes in the skin on my hand accelerate over the last two months, much more than they have over the last 18 months!!
What I thought was a patch of stubborn dry skin, turned out to be the start of sclerodactyly, which is now quite visible (at least to me!) and beginning to take it's toll on both hands.
In the last few weeks, I have started suffering with pain in several finger joints, and I am now finding that I have pins and needles on a regular basis. I noticed yesterday, that all the fingers on my right hand, have a red mark across the knuckle joint, which looks like I've scrapped it against a wall (just with no scrape mark).
I asked my doctor if we can sort out some pain relief, and as suggested by my consultant, he agreed that we try hydroxychloroquine (Plaquenil). However, I need an eye test first, which looks like being a long wait (my appointment is going to be a minimum of eight weeks from now) I'm also hoping it will help with the fatigue that I have been suffering with too.
Can someone out there let me know if this is the norm - symptoms and waiting time for pain relief meds (I'm in the UK, so I know the US contingent can't comment on the wait time) so that I don't feel quite to paranoid.
Other than that, I have to say that the change in weather - a bit more sun, and a bit more daylight - seems to have brightened my mood no end recently - YAY for summer!!
Posted 05 May 2010 - 04:59 AM
I can't really say if anything at all is "normal" with systemic scleroderma, because it is very individualized and everyone has different symptoms and different levels of progression. There is just nothing predictable about it, at all, so trying to figure out if a symptom is average or normal or to be expected or whatever, is virtually impossible.
Please keep in mind I have no medical training at all. As I understand it, Plaquenil isn't a pain medication, per se. It's aimed at trying to reduce the underlying inflammation. In essence, it's really an anti-malarial drug that they accidentally found useful in some types of arthritis (like lupus and scleroderma, for example.) It also doesn't work instantly; usually if people improve on it, it is gradual and over the course of about three to six months. I was on it for many years, and found it quite helpful in many regards, including reducing joint pain and fatigue and worsening. But eventually I had to stop it, since I also have psoriasis and Plaquenil can make psoriasis worse.
Please remember to go to your primary care doctor for all new symptoms. Many of us have learned the hard way that we should never try to "save" a symptom for our scleroderma expert, since every symptom needs prompt evaluation and usually treatment as well. When your primary care doctor documents things, then the resulting documentation is great to take to your next specialist visit! As well, they might prescribe something, perhaps over the counter anti-inflammatories, to help with joint pain (for example.)
There is something called dermatomyositis, a similar autoimmune disease which can occur in overlap with scleroderma or by itself. It can cause what is called Groton's Papules, which are large reddened papules on top of the knuckles. I'm not saying that's what you are describing, at all, but what I am saying is that if you have a new symptom, take a picture of it (if it's a visible one) and also see your primary care doctor soon.
I don't know about wait times in the U.K., but there is a shortage of rheumatologists in the U.S. so in many areas it is not unusual to wait three to six months for a first visit with a rheumatologist. Thus your 8-week wait for an expert center sounds very reasonable, especially since in the meantime, you should not be going without care.
Still, I know what it's like. When we're first sick, we expect that we can go to the doctor the next day, get it diagnosed and treated and be fine and dandy in a week or two. It's shocking to realize that it can take forever and a day to get into the doctor, not to mention diagnosed, and let's not even discuss treatment yet, when it is something more serious!
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 05 May 2010 - 05:34 AM
As Shelley says Sclero seems to affect different people different ways and I have found that in spite of having the decompression operation for Carpal Tunnel Syndrome I still do get pins and needles in my fingers (it was much worse before the operation though!! ) My Raynaud's has been the worst it's ever been this year but I put that down to the extra cold winter we've had; my joints do seem to be worse in the damp and cold.
I think the waiting times vary a bit depending where you are in the UK; my only gripe (and it's a very small one!! ) about the NHS treatment I received is that I had to wait 6 weeks to see a local consultant and then another 6 weeks after that to see the excellent consultant at The Royal Brompton; once in the loop, though, my feet barely touched the ground, so perhaps when you see your eye specialist they'll be able to sort the dose of Plaquenil for you quite quickly.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 05 May 2010 - 10:16 AM
Pity about the Bank Holiday weekend weather eh?! Waiting for the first appointment with any consultant is a big deal but I think in the scheme of things 8 weeks is quite soon.
Do let us know how you get on and take care.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 05 May 2010 - 12:20 PM
Posted 05 May 2010 - 05:10 PM
Same as Miocean, my first symptom was pins and needles.
I would add that I started doing lots of hand exercises and I do them all the time. Whilst this hasn't helped with swelling I am certain that it has stopped my fingers from curling too much.
Posted 06 May 2010 - 01:38 AM
Hope you get sorted soon.
Posted 06 May 2010 - 11:42 AM
Hugs and warmth,
Posted 06 May 2010 - 11:11 PM
Shelley - thanks for pointing out the cross-over condition - I wouldn't have even thought about looking for something like that, so that's opened my eyes a little !
It's funny, but looking back now, having read all your comments, I'm realising that I may have had symptoms for sooooo long now. I started with what was diagnosed as RSI (Repetitive Strain Injury) nearly 20 years ago now, and it does make me wonder......
I have booked to see my general practitioner next week, so I will hopefully be able to talk it all through with him (he's a nice guy, who has made a point of looking up Scleroderma now I have been diagnosed, which I thought showed he has more than the passing interest that most GPs seem to have !)
Thanks again to you all xx
Posted 07 May 2010 - 02:19 AM
I have had pins and needles in both hands and ended up having both carpal tunnels operated on within the space of a couple of months and my rheumatologist says that it is quite common to get this problem. I was diagnosed with Limited SSc nearly 3 years ago.
Hope that you get things sorted quickly for you.
Posted 11 May 2010 - 04:23 PM
Now I have 7 different autoimmune diseases and it keeps going, and going, and going. The last diagnosis was just 2 weeks ago with a CT to check a lung nodule. The nodule thankfully hasn't changed but in just 6 months I have degeneration of the spine and disc disease, which they feel will continue to deteriorate. In addition there are esophageal issues that have declined; foot padding has disappeared as well as having planter faciitis, and never mind the continual pain that I deal with and horrible fatigue. So this disease is never ending and constantly changing. I am hoping that at some point I hit that time period that people talk about when they go into some type of "remission" where everything slows down and calms down. So far it's the opposite for me. It's just good to see other people who had the same start to all of this as I had.