Grandma To Em and Kenn

Swelling in legs and feet with CREST

16 posts in this topic

Hi all!

 

I'm new to these forums and was wondering if anyone who has CREST syndrome has experience leg and foot swelling, especially during the summer months. This is getting very painful and I just went to see my general practitioner yesterday who put me on a dose of prednisone as well as an antibiotic and told me to call her if it doesn't get any better. My rheumatologist has said it's probably cellulitis but isn't sure. I'm also on 40 mg. of Lasix and now my left leg and foot is more swollen than the right. The swelling makes it pretty uncomfortable to wear shoes so I'm stuck wearing Crocs, which make my feet sweat like crazy. (We're having 90 degree plus days here and the less on the better!)

 

Help me not to feel so odd.

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Hi Grandma,

 

Welcome to Sclero Forums! I'm sorry you have scleroderma and send my best wishes to you.

 

As it happens, leg swelling can occur with scleroderma and can also be caused by many things not related to scleroderma. I do know what it's like since I have had intermittent leg swelling for years, and sometimes, like you, to the point where I can't even get into my shoes. There are so many possible underlying causes, including inflammation from skin involvement, heart/lung issues, too much salt in the diet, kidney problems, cellulitis, etc. so you'll just need to keep working with your doctors until they find the cause as well as something that helps it.

 

I can share with you things I've found to be helpful for me, but you want to make sure that anything you do is okay by your doctors, because I have no medical training at all, not even a current first aid certificate!

 

I find it helpful to put my feet up as much as possible; the idea is that they should be raised over the level of the heart. So when napping or sleeping, it can help me to prop my legs up on big cushions (like couch cushions). I try to remember to drink ample amounts of water along with the Lasix so I don't get dehydrated, which is a very serious possibility in hot weather, and which can cause even more fluid retention. I use fresh herbs for seasonings instead of salt; and for salt I use sea salt instead, because it tastes better and saltier so I need less of it, and I don't add it while cooking (which will dampen its flavor, so then I need more), but only at the end, instead. I avoid a lot of processed foods that contain salt, when it is at its worst. I prefer going barefoot when I can get away with it. For socks I keep some diabetic socks on hand, which are loose and don't restrict the circulation, and I buy my shoes a size wider than they have to be. This also gives me room to put on double layers of socks, which is often necessary for me due to Raynaud's in my feet. It also allows wiggle room for the edema, when it's acting up.

 

Take your meds, prop your feet up, have a glass of ice water, and join me in a welcoming toast to Sclero Forums. I'm sure you'll find many new friends here, and hope you settle in for the long run.

 

: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 Grandma,

 

Welcome to these forums!

 

I'm sorry to hear that you have had such a problem with swollen feet and ankles. Thankfully I haven't suffered with this particular symptom, but my elderly mother suffers greatly with very swollen ankles so I can sympathise with you. I think in her case it is a circulatory problem, as she's rather frail now and not able to get around as easily as she did.

 

I've included a link to CREST which I do hope you'll find interesting and informative. I've also included our link to finding a Scleroderma expert should you need one as we do recommend that you're seen by a Scleroderma specialist as sadly many rheumatologists just do not have the expertise to deal with this unusual disease.

 

I'm pleased that you've found our forums and joined our community and I'm looking forward to reading your posts. 

 

:hug-group:


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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Hello Grandma

 

Welcome to the forums! I had swelling of the feet at the beginning of my scleroderma journey but haven't had any since then which is weird considering I was in heart failure last year so should have? I always assume that since the skin on my feet and calves is still tight that they couldn't swell now but I've no idea whether that's true or not.

 

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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Hi Grandma~!

 

I join the other ladies in welcoming you to "Our Family", where we hope to see you posting often :emoticons-group-hug: .

 

Not to say this would be what is going on with the swelling you are experiencing, but I too, have had hand, leg and feet swelling taking place and it seems to be due to the warmer summer temperatures.

 

Shelley's response to her experience with swelling is how I also deal with the swelling. Unlike her, I do not take Lasix, however. If you have not yet spoken to your dr, it would likely be a good idea, just in case something could be done.

 

In the meantime, I am sending :emoticon-hug: s to you, to use as needed ;)


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Grandma,

 

From one Grandma to another, I also have trouble with swelling legs but in my case I know it is poor circulation. As you probably know Scleroderma affects smooth muscle and so blood vessels can suffer quite badly. That is the straw I seem to have drawn, and so ever since my early 20's I have had varicose superficial veins and now that I am older the deeper veins are affected. In my case I started getting ankle ulcers as a first indication that something was not right and I have also had episodes of cellulitis.

 

The circulation problem can be identified by a doppler ultrasound. That is a very simple procedure and I have had them done at home by the District Nurse. It measures the blood flows in the ankles and feet. My doppler results indicate venous incompetence which causes swelling and itching and I hate that!! The good thing is that since my problem is venous (as against arterial) I can wear support stockings. I am now up to wearing very strong ones, having started years ago just wearing 'flight sox'.

 

As others have said, talk to your general practitioner to try to identify the cause and in some cases, like mine, there is help to be had.

 

Good luck

 

Warm Hugs

 

Judyt

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Thank you so much for your kind words. I will keep them in mind.

 

You are all so kind. Thank you so much for your replies. I will be calling my rheumatologist to see if he can fit me in the next week or so.

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Hello! Welcome to the forum! I haven't had this happen to me yet, but I just came from the rheumatologist and was told to let them know if it does. Let us know how it goes for you!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Dear Grandma,

 

I am one year into my diagnosis of CREST or limited scleroderma; I have awful swelling in my ankles and hands. It's not always in the summer; it happens when I am on my feet too long or walk. One doctor originally thought that it was due to the nifedipine I was on for the Raynauds, but after being taken off the meds it's still there. I keep moving and feet up when I can. I just saw a wonderful doctor who specializes in scleroderma. He is starting a new therapy of meds, hopefully these will help.

 

Keep your chin up!

Marsha

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I see my rheumatologist in September but I think I'm going to try to move my appointment up because my general practitioner saw me today when I went with my husband for his physical and he said if the prednisone worked getting the swelling down that it's definitely a scleroderma issue going on and not just simple edema. (I got the 2 for one on hubby's appointment! LOL!)

 

The only problem with having to take the prednisone is that I have such a hard time getting to sleep at night from it. Dose is tapering off (down to 30 mg. today) but I feel like I've drank coffee all day long (didn't.....shucks!). Don't want to have to rely on it either because I'm big enough (weight wise) and don't need a "boost" to my appetite! One of those lose-lose moments in a life with scleroderma!

 

Thanks for the encouragement all. :emoticons-line-dance:

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Hi Grandma,

 

It sounds like a good idea if you can get an appointment a bit sooner, if only to explain things to your rheumatologist and help to put your mind at rest.

 

I also take Prednisolone and was advised by my consultant to take the medication in the morning with or after food, rather than in the evening where it could definately disturb my sleep patterns. I must admit that I've not experienced sleeping problems with the drug but I'm on a comparitively low dose of 7.5 mgs and it did have me swinging from the chandeliers at first!! :lol: It's a good thing that your rheumatologist is tapering off the amount of Prednisolone you're taking as it can cause renal crisis in Systemic Scleroderma so high amounts are not recommended.

 

Let us know how you get on with your rheumatologist's appointment, won't you?


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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I am also on Prednisone right now and tapering it down. He said the same thing Joelf, about the kidneys I would like to come off of it, but it really has helped with the aches and pains and stiffness in my joints. Good Luck Gramma and keep us posted on your rheumatologist appointment.

 

Marsha

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Steroids? I'm in the camp of loving them. I know how absolutely awful they are, but it's great not hurting all the time and having some energy. I'd really like to be back on them.

 

Swelling in the legs and feet - yes, I have that. But no, not nearly so bad as when I was on Norvasc. I felt like the elephant woman. Once that was discontinued things improved. Right now, I swell up most when it gets hot, but also when I am not moving around enough. There are so many causes of edema that it is probably better left to the doctors to pinpoint the cause.

 

You should see my shoe wardrobe. Madam Marcos, look out. I have shoes that will fit everything from my normal ultra-narrow to my truly uncomfortable ultra-fat. Weird how they are all very similar bar the size~ I feel like I am letting down womanhood. :lol:


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 Grandma!

 

Welcome to the sclero forums, I'm so glad you've joined us. You've come to the right place for those who truly understand what you're going through.

 

Edema (swelling) can be caused by so many things, so I'm sure it's difficult for your provider to determine if it's scleroderma related or not. I have CREST and do have swelling, but taking a diuretic when needed seems to do the trick for me. I hope that you soon find your cute little feet in something other than crocs!

 

:flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Wow. I found this Scleroderma forum because I wanted to see if my new leg swelling symptoms were related to my scleroderma. I had no idea there were so many people with the same symptoms.

 

I saw my doctor today and he said, based on my history, there's a 50% chance it's related to my scleroderma and 50% chance it's a problem with my heart. So, of course, I heard the word 'heart'  and my actual almost stopped. I  paid no attention to the scleroderma part of the equation because I didn't know leg swelling was common with scleroderma. There's still so much to learn. I'm glad I found a home here. 

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