5 posts in this topic

Last Friday night, my legs were sore and all swollen up. But NOT gaining weight.  Went to the doctor and they did a bunch of tests, all came back normal.

 

Is this a symptom of Scleroderma?  I had this happen to me back in 1990 when I had kidney problems, but my kidneys are 100% now.

 

Any feedback?

 

Thanks

Ron

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Hi Ronald,

 

In scleroderma, edema can occur from many different causes, as you've likely heard from your doctor by now. 

 

When I've had it due to skin thickening, I've gained up to 30 pounds in a few weeks and I couldn't even wear most of my shoes. Water pills and anti-inflammatories helped a lot with that but sometimes it is also a matter of just waiting it out. That sort of thing is definitely something to see a scleroderma expert about.

 

I also get edema from just sitting around too much, or having my legs down too much. It helps for me to use an easy chair whenever I'm relaxing, as elevating the feet reduces the swelling and can even prevent it.  Sometimes just too much salt in the diet (usually, hidden salt, like in any processed food) can make my hands or feet swell up like balloons.

 

Usually its all easily remedied, by putting my feet up, getting more activity, not sitting around so much, watching salt more carefully, and drinking the right amount of fluids.  I say right amount, because dehydration can also cause fluid retention, which is a real catch-22.  Its good to keep electrolytes, in general, in good balance.

 

Over time, you will gradually learn what's causing the issue for you, and how to avoid it. It's good your labs were normal, that is always a pleasant starting point. But after awhile, your primary care doctor will probably become immune to the situation, and poke at the spots and go, Huh, and move onto another subject -- once they are comfortable that the worst causes (organ failure, blood clots, etc.) are ruled out.

 

If you don't already have a recliner, I'd recommend getting one, because they are comfortable and because I find it more enjoyable to be in the recliner than to try to prop my legs up on always toppling pillows in bed. And, keep us posted, let us know how things are going for you, okay?

 

:hug-group:


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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Thanks Shelley,

 

I work at a computer all day and my bed is raised up 12 inches due to acid reflux, so my legs are always down.  I would love a recliner, but can't afford it as I am on long term disablity.  Yes you can work while on govenment disablity for anyone reading this and wondering.

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Hi Ronald,

 

Hmmm. Then you will probably need to get a pile of pillows or blankets for your bed. I think folded blankets work best, but use whatever you can muster. The idea is to get your legs up higher than your heart (your heart, not your head) to put gravity to work for you.

 

For many years, I didn't have a recliner, so I had to rest in bed, and it was very hard for me to get situated properly, to be able to read or whatnot, because the idea is that you aren't sitting up in bed, you are laying down, to keep the legs higher.

 

But that's another thing. It's my understanding that they normally recommend only 4 to 6 inches for elevation for acid reflux. Any more than that probably isn't helpful, and it might even be exacerbating your edema, because gravity is working against you and making it harder to get fluids going uphill.

 

Perhaps cutting your elevation in half might work, along with creating some sort of leg elevation. Again, it doesn't have to be overkill, your legs don't need to be sky high, but rather just a bit higher than your heart.

 

I also just put my feet up whenever I get the chance, even if they are not above my heart, as any little bit can help. I use foot rests under my computer, too.

 

And of course, I'm not a doctor, I have no medical training at all, so be sure you make any changes based on a reliable medical source.

 

:hug-group:


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 Ronald,

 

After my hip operation, I developed cellulitis, which caused my operated leg to swell alarmingly (probably not helped by the tight anti DVT stockings I had to wear for six weeks.) A lot of that was inflammation, particularly around my knee, which was very bruised and swollen, due to being pulled about during the operation. I had to rest with my legs up for a couple of hours a day to help to reduce the swelling.

 

I must admit I've never noticed my legs swelling due to Scleroderma, but in the beginning my fingers swelled up alarmingly. I spent an absolute fortune getting all my rings made larger, only to have to get them reduced again, once I was taking my medication!

 

Kind regards,


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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