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notlettingo

Joint Pain - MCTD?

11 posts in this topic

Hi,

:emoticon-dont-know:

 

I'm just wondering if anyone would have some helpful tips to relieve joint pain - without medications.

 

I have had joint pain since I was 9 years old. :( I have just recently been diagnosed with MCTD and was figuring others have this same problem and could help me out. :emoticons-group-hug:

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Exercise. Moist hot packs. Massage and range of motion manipulation. Exercise, did I mention that already? Your best bet is to talk to your doctor about it. Physiotherapy can help direct the right exercise for the right joint. Sometimes, depending on the exact cause of the pain, medications are necessary to prevent damage and may coincidentally reduce pain.

 

I'm intolerant of most pain medications and even if I weren't, my doctors are reluctant to prescribe anything that might contribute to my GI problems. That means keeping an eye on my NSAID usage too because they are also concerned about GI bleeding. We've had to look at other ways of addressing my sometimes quite significant pain. The one thing that consistently works for me is exercise. If for any reason I don't get enough exercise (like last month when I was laid up with the flu), my pain levels ramp up. I'm slowly getting it back under control, but not by jumping into the deep end of the pool and trying to swim laps! Moderation is the key. Slow increases in exercise, etc. Do not try to do this >>> :emoticons-line-dance: for an hour!

 

The pain page has lots of info and tips, but I can also recommend meditation and 'living in the moment'. Mornings aren't great for me, but right now I'm not thinking how bad things ache or how creaky I feel, I'm glancing out the office window (my work table is pulled right up to it) and appreciating the colors that are appearing in the sky. Did you know grays can have a peachy-pearly undertone? Lovely, I wish I could paint that.

 

I hope you find your method of pain relief.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Notlettingo,

 

I'm another advocate of exercise; it relieves tension and releases endorphins into the blood stream to raise the spirits. Obviously it is important to make sure that the exercise you do is tailored to your own degree of fitness and takes into account the problems you have with your joints. As Jeannie says, moderation in all things is the best way.

 

Before I was diagnosed I suffered with terrible joint pains mainly in my wrists and knees; I always exercise with supports on both my wrists and knees and I have certainly cut down the amount of running I do; I'm afraid running outside on hard ground is an absolute no-no, but I can usually run for up to an hour a couple of times a week on the treadmill at the gym which is a little more cushioned. Also I've found a hot water bottle (wrapped in a towel or with a cover over it) placed on the aching joint does help a lot in relieving the pain. (I found this to work particularly well in low back pain.)

 

I do hope this will help you to feel a little more comfortable. :emoticons-group-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Mornings are not good for me either, I get up briefly to do hubby breakfast (which he greatly appreciates) and am usually in between pain relief so standing is not a pleasant experience and my ulcers are barking by then as well, boy do they have a lot to say for themselves! I find myself hobbling around with gritted teeth, however, it's my choice to get up and do breakfast and I get to retreat to bed soon after.

 

Attitude is everything and I am trying to improve mine, when the pain is insisting on my full attention my attitude often leaves a lot to be desired :D Totally understandable I know but not sustainable in the long term for me or those around me. Jeannie's right about "living in the moment" and making the most of the small things.

 

Shelley said something in a previous post about how the point of pain relief is to reduce the pain not necessarily reduce us to such a stupor that we feel nothing...as appealing as that might be at times! It made me think that pain, whatever the cause, may well be a part of my life for some time to come, that was quite a liberating realisation. Whether I want it or not I have to accommodate it and it's in my own interest to make the best of it. :P So to quote a fellow member "onwards and upwards!"

 

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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:emoticon-dont-know: Thanks for all the tips. As you've mentioned, I have noticed exercise helps! Now, on to my next question - the swelling. hands, face, legs. What is that from? That started long before the Raynaud's. Usually is worst after a lot of activity. So, exercise is both good and bad? And, just because I get Raynaud's, does that mean I will have ulcers? :emoticon-dont-know:

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Well, your doctor is really the person to diagnose the swelling~ I doubt it has anything to do with the Raynaud's though and like so many other things, the list of possible causes is longer than the proverbial piece of string. :lol:

 

As far as having Raynaud's meaning you'll definitely have ulcers, of course it doesn't. I've yet to have an ulcer and I've had Raynaud's quite a long time. It's still important to take all the usual precautions (like wearing gloves when you are rooting around in the bottom of the freezer for that last quart of chocolate ice cream that you just know is there) to prevent and limit attacks. Here is the page of Raynaud's Prevention tips for some handy suggestions. :)


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi NLG,

 

I'll answer your last question first; :) I have Raynaud's and have suffered with it for at least 5 years, possibly longer (I can't remember exactly when it first started) but so far (touch wood!) have not yet had any ulcers although I have had splits in the skin at the tips of my fingers, mainly caused, I suspect, by getting my hands constantly wet and cold, particularly when I had my horse. The splits have improved due to my taking greater care of my hands since being diagnosed with Sclero about 20 months ago.

 

Please note that although I enjoy telling my doctor how to do her job, I have no actual medical training ;) but I understand that a lot of the swelling comes from inflammation, particularly in the joints. My fingers, wrists and knees were the worst affected, being dreadfully stiff and painful, especially if I was in one position for a long time, or first thing in the morning. We have a link here to edema (swelling) which covers swellings of the fingers and which I hope will be interesting to you.

 

I think it's very important to make sure that the exercise you do doesn't put any more strain on joints and muscles that are already inflamed so it's important to tailor your exercise to an amount that you can do comfortably. I think, as Jeannie has said, that you should consult your doctor to make sure that your exercise regime is right for you and is not worsening any joint problems you may have.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Ditto to exercise and massage. My massage therapist is amazing, although the hour I am with her is not so fun. I have a combo of Sclero and Fibro, but I find relief for quit a few days after.

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Hi NLG,

 

That's a great question. I have a zillion things I could mention for pain relief, especially including the joy of hobbies that require 100% concentration. Music, art, reading, stretching, warm packs, walking, relaxation, warm showers, I could go on and on. But one of my favorites for joint pain is purely floating in a pleasantly warm pool. I try to find a time when nobody else is in the pool, and then just float. I float to the point where I'll actually fall asleep. Even to the point where I'm so out of it that the only thing that wakes me up is my head banging into the concrete side of the pool. I imagine all my worries floating up to the ceiling and stress floating out of my body.

 

While we're floating, there is no stress on any of our joints. Sometimes I'll do some stretches in the water, before or after. But just plain floating gives me a 100% break from joint pain (in particular) which is pure heaven on those pesky times when all else seems to fail.

 

The Arthritis Foundation has warm pool classes throughout the U.S. in most major cities, with trained instructors for those of us with arthritis (like scleroderma). The classes are very nice, but I still get the most joint pain relief from just plain floating.


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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Shelley, that sounds so wonderful. I don't have a pool, and in the small town I live there is no public pool except an outside one that is open for summer only, and then it's full of about 180 kids at all times. :angry: But boy would I like to give that a try sometime.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Pam,

 

If you have any area hotels with swimming pools, I've found it never hurts to ask if they offer day passes for the pool. A few don't charge at all, but some offer very reasonable access. Also consider whether you know anyone who lives in a complex with a pool. Often they'd love to have a swimming buddy join them, either regularly or occasionally, and most allow a few guests for each resident.

 

And if not, oh well, you might try to aim for places with pools when you are on vacation, or get a day pass for the Y next time you go shopping in the 'big city'. We have an abundance of public and private pools in our area -- plus a few more new lakes and rivers to come when then snow melts this spring. All else fails, a long warm bath will do -- but frankly, in my opinion, it's helpful but not the same (for severe joint pain) unless you can somehow manage to float.


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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