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Swelling feet, ankles anyone else experience this


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#1 Sharonvandee

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Posted 18 October 2008 - 04:10 PM

Hey

With the weather warming here I have started to experience swelling feet and ankles. The soles of my feet are also very tender. They go down overnight and within and hour of being up they start to swell. I am currently on verapramil and norvasc but have not had this problem before yet been on them a while. I suppose I am curious to know if anyone else experienced this sudden onset and weather there is much you can do for it.

Thank Sharon
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 canon

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Posted 18 October 2008 - 04:42 PM

Hi Sharon,

Sorry you are having new symptoms. Some people do not pay too much sttention to swollen feet and ankles especially when warm weather sets in, providing the swelling subsides quickly. Scleroderma and anticardiolipins or other overlaps
are not nice or safe things to have. I am learning the hard way to make that call to a Doctor because those symptoms can mean something we would not think of or maybe we do think of because of what we have read but can not put them together. I know I really dislike adding anymore symptoms so denial can play a big part too at least for me.

Take care.

Judy
A happy heart is good medicine.

#3 summer

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Posted 19 October 2008 - 09:13 PM

Hi Sharon,
If I was you I would give Kathleen (nurse) at Monash a call, and explain the problems with the swelling. It might be nothing to worry about, but It is better to be safe than sorry. Usually, she would give Dr Sahaar a call to see whether it is worth you coming in, or she may give you an over the phone consult, considering you are so far away.

Let me know how things get on.

Take care
Celia

#4 Lyn

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Posted 20 October 2008 - 03:49 AM

My ankles swell every summer. I am told to elvate my feet, walk about.... nothing changes the fact that my feet swell in hot weather. I wake up in the morning with beautiful, slim ankles, and in an hour or 2 they can look like tree trunks. My sister has this also. She has undifferentiated autoimmune disease, I have sclreo. I have no idea at all if that means anything! If I go from my bed directly to my recliner and elevate my feet, they stay skinny. I do not know who can live like that, but I cannot! If it was circulation, why doesn't it happen all year??! I gave up, and just live with it. They get quite tight and painful. I am sorry to hear that you have this probem.

#5 Amanda Thorpe

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Posted 20 October 2008 - 11:11 AM

At the beginning of my sclero symptoms my feet swelled so that I had to wear a bigger size shoe. It was summer at the time. Coinsidence, I think not.

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#6 Nina

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Posted 20 October 2008 - 01:46 PM

Hi everyone ~
I have had problems with swelling in my ankles, particularly in the summer (humid weather is the worst). I'm told that I "retain" fluid. I've tried fluid pills, but can not tolorate them, I couldn't leave the house, had to stay very close to the "ladies room." I guess I've just gotten use to this condition, even though I am in great pain much of the time.
Don't know if anyone else has this, but my feet and legs itch something terrible. When I do scratch them, they hurt....doesn't make any sense, but then what about this disease does make any sense?
I'm waiting on some pretty extensive blood work, and will return to my neurologist in December, rheumatologist in early November ~ and my PC next week. I get so tired of seeing doctors...
Oh yes, I finally made an appointment with a "Scleroderma Specialist" (he only sees Scleroderma patients), my appointment is in January 2009.
Hang in there and ask lots of questions ~ things will get better than what they seem right now.
Much love,
Nina (DE)

#7 Sharonvandee

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Posted 21 October 2008 - 08:38 PM

Thanks all for the replies

Celia

I spoke to Kathleen, who then got DR Sahar to ring and we discussed the possible causes, Finally she said that it is a problem with the bodies ability to transfer blood back to the heart. She suggested a few things to try and recommended that I ask my general practitioner to organise some test. So I am off to general practitioner on Friday and will see what the tests show.

Shaz
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#8 summer

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Posted 21 October 2008 - 10:34 PM

Hi Sharon,
Glad to hear that Dr Sahaar called you about your problems, they are a great bunch at Monash and also good with follow ups if you need them.

Try not to worry too much about your test results. If there is one thing I have learnt about this disease it is patience.

Take care and rest if you are able.

Celia :D

#9 omaeva

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Posted 22 October 2008 - 04:47 PM

I have that issue when I'm on norvasc and my feet get warm.

#10 sophiebun

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Posted 23 October 2008 - 02:16 PM

I started having that problem two summers ago, then I also started getting a little short of breath, but I have asthma. My doctor said oh it's the heat and probably PMS, grrrrrr. It kept getting worse and the breathing got worse, I finally went to the Emergency Room and was diagnosed with fluid on my heart and Congestive Heart Failure. Now I take Lasix, a diuretic, everyday. It's better to check and be safe than sorry. A simple echocardiogram can check things out. Good luck. I hope yours ends up just being the heat.

#11 Sharonvandee

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Posted 23 October 2008 - 07:47 PM

Hmm thanks for the comments

I went to general practitioner today and she is baffled as the swelling is behind the ankle and she rulled out edema. She has sent me off for ultrasound and xrays. If they show nothing she will then refer for chest ct and echocardiogram. So for now I will wait and see. It does though concern me that it happens even when I have raynauds and toes are purple so I am sure it is not a heat thing :(
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#12 summer

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Posted 23 October 2008 - 09:03 PM

Hi Sharon,
Thanks for the update, I also have mild swelling at the back of my ankles but have thought nothing of it. How bad is the swelling from 1 to 10.

Thanks
Celia

#13 lizzie

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Posted 24 October 2008 - 02:51 AM

Hi Sharon, I suffer from swollen feet /ankles and legs all year round now , although they are much worse in hot weather. No matter how warm it is - if I try to wear sandals my feet look blue. My rheumatologist has investigated me for possible causes , such as kidney problems and pulmonary hypertension. I had a doppler scan to look at my circulation that showed that my femoral artery on the Left is a bit restricted where it passes through the inguinal canal in the groin , due to a congential abnormaility. However, doesn't really account for the swelling - so think it is one of those sclero 'things' - although the Calcium channel blockers also play some part I think. I have resigned myself to not being able to wear skirts or sandals in the summer and only wearing skirts with boots in winter - as the ankes/legs are really not up to public display.

Lizzie

#14 Sharonvandee

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Posted 25 October 2008 - 07:46 PM

Celia

on a bad day they are an 8 - 9 and I can barely walkk on them for the pain that is causes. On a genreal day a 3-4 with low level pain. On the general day they look like a sprain ankle on a bad day they look like oedema when I was pregnant and the onlything I can wear on my feet is my clogs. On the bad days the whole foot from the toe back is swollen.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#15 RememberingToSmile

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Posted 26 October 2008 - 04:10 AM

Just a quick comment....

Ankle swelling (and shortness of breath) is a good example of what is so frustrating about this disease. Is it the disease.... side effects of the medications.... not enought stretching/exercise.... diet, too much salt.... or something new and completely unrelated to scleroderma.

I am glad to hear your doctor has ideas - keep us posted.

-RTS

#16 razz

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Posted 26 October 2008 - 05:33 AM

Sharon,

I had hand and feet swelling early on. It felt like my feet were on fire. I even thought I would have to go to a bigger shoe size. I couldn't shake hands with anyone because I would cringe from the pain. I noticed the swelling was worse when I was physically active. If you can, take a break and put your legs up for a while.

Hope your doctor was able to make a good recommendation.

Hugs,
Razz
Live well, Laugh often, Love much

#17 Purr

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Posted 27 October 2008 - 03:13 AM

Hi Sharon,

I also have the hand and feet swelling. It usually starts bothering me in the evening. The swelling isn't very noticable (at least to me), but when they get like that, even socks hurt my feet. I have to cut the little thread of elastic at the top because it feels like it's cutting off my circulation. I end up taking off the socks because my feet burn so bad it feels like I'm walking on ridges. My hands don't get quite so bad. I do like Razz and prop my feet up for a while.

Christy
Love makes the world go around!

#18 Sharonvandee

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Posted 27 October 2008 - 05:49 PM

I would dearly love to pop my feet up but tis a little hard with a three year old lol tis almost impossible. It is usually 8pm before I even think about me. Aw well will make an effort though to try as it is getting harder and harder to get through the day as the pain is getting worse.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#19 Sharonvandee

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Posted 30 October 2008 - 10:23 AM

Update on swelling.

Well it continues to worsen with the level of pain being quite bad. I now end up in tears by the time night has come. An hour of shopping is too much for them to bear leaving me very dependent on my hubby. I hate this disease and what it robs you of .
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#20 canon

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Posted 30 October 2008 - 05:24 PM

Sharon,

So sorry you are still feeling ill and worse. Please give your Doctor a call for some help. They might have a suggestion which will ease some of the pain for you.

It is a terrible disease and for some reason the pain can be just so awful. Keep your feet up as much as you can to see if the swelling goes down. Sometimes if the swelling goes down the pain decreases too. Put your favorite music on and sit a nice comfy chair.

With gentle thoughts.

Judy
A happy heart is good medicine.