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msjess

Joint pain - where is/was yours specifically?

14 posts in this topic

Hello folks,

 

I have a question about joint involvement in scleroderma. Where is yours specifically and how would you describe it?

 

I am currently experiencing joint pains in every hand and finger joint, with specific redness around every DIP joint (that closest to the fingernail). I also have noticed what looks like may be joint involvement in my toes on left foot in particular (the PIP joints are swollen and seem to be contracted on two toes now). Generally, I continue to have neck/shoulder pains that may be facet joint pains, and disc pain in the lumbar region, along with knee joint pains.

 

What has been the pattern of joint pain for you? Also, does that pain wax and wane? I find that my joints are very stiff first in morning for more than an hour, maybe two, and then I get a slight reprieve unless I am using my hands a lot - then it comes back as more of a soreness/weakness.

 

Thank you for taking the time to read and respond!

 

~Jess

 

PS. I go to the rheumatologist finally in a little over a week. It seems like this wait has been forever!

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Hello Jess

 

Morning stiffness is common. I lived in the US many years ago and remember a particular commercial for a well known brand of aspirin, in the commercial an elderly lady in a drab, brown robe, shuffles around her kitchen clearly stiff and in pain, despite her arthritic hands she manages to open the bottle and of course finds amazing relief once she pops the pill. Thanks to scleroderma I AM that lady minus the amazing relief and tasteless brown robe of course! I am so stiff and so painful in the early hours that I have a commode next to my bed so my pathetic, little bladder can be emptied.

 

Part of the cause of morning stiffness is that we have been lying or sitting in one position for a long period overnight and our pain relief is usually at its lowest ebb and this exacerbates the joint pain.

 

Joint pain is really common in scleroderma but I managed to avoid it until about a year ago. I had no joint pain until I woke one morning with pain in my left shoulder, this then included my left elbow and then again I woke one morning and every joint known to man hurt! Now the pain is there on a morning or if a joint is kept in one position for too long.

 

I hope this helps and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jess,

 

I can certainly empathise with the joint pains you're experiencing; I think perhaps the joint pain is now for me one of the worst aspects of the disease; ironically, it tends to affect me more than my lungs. I realise that I'm more likely to die if my lungs pack up than if my joints hurt, but the joint pain affects my quality of life more than my lung involvement, as I'm fortunate that my lungs are fairly stable now.

 

One of the first problems I experienced was dreadful pain in my hands and wrists from carpal tunnel syndrome and my fingers were incredibly swollen, so much so that I had to have all my rings re-sized. (Unfortunately it cost me an absolute fortune to have them made smaller again, as once I started taking my medication, my fingers went back to their original size, but of course at the time I didn't realise the cause!! :rolleyes: )

 

I do have pain in my knees and hips as well and although pre-Scleroderma I used to do a lot of running, my joints really can't take the pounding any more, so although my lungs don't prevent me from exercising, I do have to be a bit careful how much I do, or I can't move the next day and certainly regret it! :P

 

As Amanda has said, first thing in the morning I'm stiff as a board, but it does wear off to a certain extent, but I know now to not overdo things, so that I try to keep the discomfort to a minimum.

 

I do hope all goes well when you have your rheumatologist's appointment next week; do please let us now how you get on!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi All,

 

Interesting thoughts come into ones brain when I start reading things like Amanda's Blog and the posts above.   Like Amanda I had internal involvement as well as Raynaud's when I was a young thing :(.   Obvious to me once I had a diagnosis in 2003 but before then just treated as baffling peculiarities (funny word that one :emoticon-dont-know:).  

 

Nobody twigged to what was going on, not the surgeon who repaired my total prolapse of the bowel - 3 times!! - not the surgeon who stretched my Oesophagus - not the dermatologist who treated my nailfold problems with antibiotics and waved away my ankle ulcers as just one of those things.

 

Now I am always saying that I don't get any joint pain and how lucky I am - well now I have just read that Jo has had her rings re-sized twice, as I have and Amanda has joint pain if a particular joint is kept in one position for too long, and the penny has dropped again.   Now I know why I can't get my back through a full day without a lie down for half an hour, and if I get engrossed in a book for too long I can't get myself up again.   I don't get constant pain (except in my back) but I do get these other things, including waking in the night with pins and needles in my arms.

 

What would we do without each other to turn the light on in our collective heads :emoticons-yes:

 

Thanks Amanda and Jo, I will take myself off for some over the counter pain killers without feeling like a softie.

 

Judyt

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Hello Judy

 

NEVER think of yourself as a softie or a wimp for using pain relief. I and a friend had a phrase at work "There's no medals for martyrs" it applies to the world of scleroderma as well, don't suffer if you don't have to, we live with too many problems we can't make better as it is so those we can make better we should.

 

Take care and it's nice to be hearing from you again.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi All,

 

Joint pain, yes, check the box for me from head to toe but with some joints definitely much worse than others from time to time.  I don't get redness in the joints, though. Anyway, since scleroderma is a form of arthritis, no big surprise there, is it?  (See Skeletal Involvement)

 

Amanda's comment is great that there are no medals for martyrs. I might also point out that there is no pay for it, either, and nobody but nobody wants to hear us moan and groan about it.  Using lifestyle modifications and medications (used exactly as prescribed, of course) can help make us more comfortable and functional. 

 

Good luck at your upcoming rheumatologist appointment, Jess!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

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.

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Hi Jess,

 

How did your rheumatologist appointment go?  I hope it went okay.  I am sending some warm hugs your way.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

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.

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Hi Jess,

 

Yes I'm with you all. I had my big toe joint fused in May on my right foot due to severe osteoarthritis. I also get pain in my right ankle, and my knees are TERRIBLE!! I have also noticed crepitus in my left shoulder and elbow. I too have contractures of 3-4 toes on my left foot (I have just put a picture up; I'd be interested to find out if yours are like mine!!) But they don't seem to hurt particularly. Sometimes my fingers are stiff, but mostly in the mornings.Obviously the best painkillers are those anti inflammatories, but I can't take them with GERD, so use pain medication occasionally if I need to.

 

Best Wishes

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Hello Inkedup

 

Just looked at your photos. Ain't it amazing how scleroderma can make the human body do things it oughtn't? Amazing in that kinda car crash way, you know, when you marvel at the fact that the occupants walked away unscathed, Pity we can't.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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My joint pain and muscle aching is mostly contained to my lower body. Thighs, hips, ankles. I would call it real stiff and achy like a tooth ache. 

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Hi, I was diagnosed with limited sclero about 6-7 years ago. My main problem was Raynauds until this summer. I had a total hysterectomy in April and began to notice my hands/ fingers swelling in June. I live in Arkansas so I assumed it was the heat or maybe the change of going through menopause. I feel blessed because I still am very active and run and workout regularly but now I have joint pain and I have pain in my feet after sitting for a period of time. My hands and fingers are quite swollen and hurt especially in the mornings and late at night.

Just had my annual appointment with the rheumatologist and he laughed at me and said the swelling wasn't because of the sclero. He put me on nifedipine and wants me to come back next month. I wanted to punch him in his nose but my daughter was in he room with me so I just smiled instead ;). Has anyone taken anything to help with the swelling or joint pain? I'm only 38 and I teach kindergarten and its becoming difficult to tie shoes, turn pages etc. Any advice is appreciated, thanks.

Cindy

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Hi Cinfor,

 

Welcome to these forums!

 

I'm sorry to hear that you're also a member of the 'painful joints' club ;) it is one of the most unpleasant aspects of this disease and can really affect your quality of life. Shelley has included a very helpful link to our medical page on Skin Involvement, which I hope you'll find informative and interesting.

 

Although I do suffer with painful joints I don't take any specific medication for it (my poor liver has enough to contend with all the other medication with which I bombard it! ;) ) I've never taken Nifedipine, although we have had other members who've been prescribed it for Raynaud's which, as it is a calcium channel blocker, is the most commonly used medication for Raynaud's in Scleroderma patients.

 

Now you've found our forums, please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Cinfor,

 

Welcome to Sclero Forums! 

 

Just out of curiosity, is your rheumatologist a listed scleroderma expert?  Swollen hands are a classic symptom of scleroderma. The usual course of action is to look into treatments that may tame down the inflammation, and to begin occupational (hand) therapy (OT) to help ward off sclerodactyly.  I had to wear splints day and night for a year when I was in that phase, and every once in awhile things will act up again.

 

So just a thought, you may want to consider seeing a scleroderma expert.  They are very few and far between!  But the usual rheumatologists usually don't know beans about the disease or know what to take seriously, how to follow the illness, or how to prevent or treat certain complications. Some of us are limited by finances, insurance or geography so not everyone is able to see an expert, so I am of course just suggesting (not demanding) that it is something you might want to consider. 

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

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.

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Hello Cinfor

 

Welcome and I echo Shelley, edema (swelling) of the hands is classic scleroderma and that your rheumatologist  didn't know this begs the question... what else don't they know? May be time for a scleroderma expert. Really the swelling hands miss is a major fumble!

 

Glad to hear scleroderma's only nibbled at the edges of your life rather than greedily ripping into it! It's helpful to hear about those with scleroderma who still manage mostly everything.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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