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Pain in legs

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#1 jaxs


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Posted 25 August 2008 - 04:21 AM

Hi not been on for a while, but someone might remember me. :mellow:

I have scleroderma, and recently noticed my legs at the ankles have been swelling to enormous size. My right leg has stopped my my left ankle is swelled all the time and never goes down the pain is bad at times and my calves go really tight, and affect my walking at times.

I went to see my own doctor but sadly its like talking to the wall. He even asked me what I was willing to achieve by seeing him. :o I will wait to see my specialist to ask her about it, that's in September. My Raynaud's is worse than ever these days and when I have an attack its taking longer for my hands to warm up again, and the pains are so bad I feel like I will cry.

I'm still waiting to see about the appeal for my dla which I'm not holding my breath. I applied late January this year and was refused, and appealed. Why do they make you go through so much stress? Thanks for reading and hope you guys are keeping well.

hugs jaxsxx
live life for today and not for tomorrow

#2 Purr


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Posted 25 August 2008 - 07:51 AM


Is your specialist appt in "early" September? If not, have you tried getting in sooner? Maybe they can fit you in. Mine did that for me last week.

Take care,
Love makes the world go around!

#3 Peggy


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Posted 25 August 2008 - 08:19 AM

Sorry to hear of your pain. I too have the pain in my legs but they don't swell like yours do. I also know what you mean when you go and see your regular doctor. I have a pain in my left side of my neck that I'm worried is my lymph nodes that they are watching for lymphoma and I had an appointment today but I cancelled it as it's a waste of time to go to him and I'll wait until I see the oncologist/hematologist in October.

I know that some of them that have problems with their Raynaud's pain have a lot of different remedies for the pain. You may want to do a post asking what it is they take so you can maybe get some relief as it sounds like you are really suffering. I have raynaud's but not as bad as you do but I know there are so many here who have that problem and have so many different things that seem to work for them.

I take pain meds and wear a pain patch for my legs. I hope that you have something you are taking for some relief. If not, maybe even a call to your doctor you can get something over the phone so you don't have to wait until your appointment.

Good luck and warm hugs,


#4 Snowbird


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Posted 25 August 2008 - 09:31 AM

Hi Jaxs

Sorry, I can't offer any better solutions....trying to get in earlier with your specialist is certainly the best if you can swing it. Sorry to hear you're having such a nasty time...I hope they will give you something quickly to help! Take care.
Sending good wishes your way!

#5 omaeva


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Posted 25 August 2008 - 08:53 PM

Are you taking medication for your raynauds? When I took norvasc my legs and feet would swell so much I couldn't' walk.

#6 Sweet


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Posted 26 August 2008 - 05:54 AM

Hey Jaxs, of course we remember you! How nice to hear from you again.

I'm sorry it's because you are having increased problems though. Have you started any new meds that may have attributed to the swelling. Sounds like edema to me. It could be so many things however. I'm glad you went to see a doctor, but I'm sorry he wasn't helpful. Is there someone else you can see before your Sept. appointment? Are you having any low back pain along with this? This may indicate some sort of kidney issue in conjunction with your lower extremity swelling.

I hope you can resolve this soon - hang in there Love!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#7 jaxs


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Posted 27 August 2008 - 07:38 AM

Hi and thanks for all your helpful replies, my legs are now cramping up at night. I seem to be waking up at night and the pains really bad I don't have any lower back pain, but at times I have trouble with my bowels :( which causes pain in my lower back.

I told my specialist the last time I seen her in June and she didn't seem bothered about it. I also have a number to phone which is a nurse I can contact if I have any problems who works with my specialist, she was the one telling me to see my doctor, he's ruled out gout :mellow: which I didn't think I had, and was told to wait to see my specialist in September. :blink: I sometimes feel a pest and they all just pass the buck. I started to take amlodopine tablets from my Raynaud's I take lansoparazole for my reflux. Anyway, I will take the advice and phone my doctor and see if I can get in earlier but I won't hold my breath...

Hugs jaxsxx
live life for today and not for tomorrow

#8 Cheryle


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Posted 27 August 2008 - 09:24 AM

Do you have shortness of breath or breathing problems? I know that can cause swelling of the ankles.

#9 smac0719


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Posted 27 August 2008 - 10:18 AM

Hi Jaxs,

I take Amlodipine for my Raynaud's as well. I understand that there is a version that includes a diuretic. Ask your doctor about it the next time you talk to him/her. I developed some swelling, but mine was very minimal and I think I notice more when I'm on my feet for longer periods of time. I hope the swelling and pain subsides soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#10 razz


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Posted 27 August 2008 - 03:50 PM


It sounds like everyone has given you great suggestions. In my early days of my diagnosis I went to see this doctor and on my first visit he said what did I expect him to do. Not a good thing to hear. He told me I had driven too far and I should go to a doctor who lived closer. He lost a very good patient!

I'm sorry to hear about your leg swelling and I hope you get to the root of the problem very soon!

Live well, Laugh often, Love much

#11 smurfette


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Posted 28 August 2008 - 02:28 PM

Your doctor sounds like he needs to go back to school and learn both compassion and how to be a doctor. I am so sorry to hear about what is happening to you and how you were treated. I do wonder whether you have had anyone do a thorough examination of you recently including your heart, blood pressure and a full blood chemistry. You could have a number of common problems that involve retention of fluids that should be checked. Sometimes when you see specialists or doctors for just one thing they miss common things because they are only focused on their area of specialty. Medical care today is so tightly timed and specialized that when you go to see the doctor for a cold you could have another condition that is staring him in the face and he won't treat it because there is no time slotted in the schedule for that. You have to make another appointment to be treated for the other thing. Your doctor sounds like he just does not know how to deal with you are all - what do you hope to accomplish? What is that supposed to mean? Perhaps receive some competent medical care! Ask hi if his malpractice insurance is paid up!

I am thinking that you should be, if you have not been already, checked for diabetes, high blood pressure or other conditions that mat be disregarded when the doctor is in tunnel vision mode dealing with your scler. You may be seen only as someone with an autoimmune disease called scler and no other issues are being considered when you present with swollen extremities. You may have to see someone who is willing to widen his search and look at you as a whole person.

I wish you good luck in your search to end your discomfort. We are here for support and as a sounding board for you to vent anytime you need us. Feel better!

Chocolate, It isn't just for breakfast anymore!

#12 canon


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Posted 29 August 2008 - 04:07 PM

Hi jax,

I know how you feel. When the symptoms you are having seem endless and forever adding to what you have already, it does turn up the stress level a tad. The normal response is to tell yourself what you are feeling isn't normal. Autoimmune diseases are not normal. It trully is not the person but the disease that is not normal. Doctors are suppose to look at both the person and the disease with some understanding. When they can't understand the disease they look at the person. When the look is always negative it might be time to find another Doctor.

When my raynauds is being relentless I use parafin heated wax (low heat). Drug stores carry the little bath machines for melting the wax. They are not too expensive. It also helps keep my hands softer. It works for me. If you have open areas on your hands you can't use the heated wax on them. Don't use them if your skin on your fingers or hands feel sensitive or numb either. Gloves are another option.

Your swollen legs and or feet sound very painful. Your symptoms are a normal part of a disease process but they are far from being normal. Please try to make an appointment as soon as you can. If they are really painful and swollen, will your insurance cover an urgent care or emergency room? What color are they? Are they red and or warm to touch?

My left ankle swelled up yesterday and is not improving. It is red but not warm to touch. I have had positive anticardiolipins in the past and will see one of the my doctor's on Tuesday. I will bring it to his attention, like it or not. Should it get worse, get hot or painful I'll be in line behind you at urgent care. When I sit I will keep it elevated over the long week end to keep the circulation going. It's been one thing after another with many of us.

We are normal, the disease is not.

A happy heart is good medicine.