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Feet involvment


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#1 perfect

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Posted 14 February 2010 - 05:38 PM

I was wondering if anyone could answer this for me, my one foot is hurting so bad for two days, it is the top of the foot and the toes, the other foot hurts also but not as bad. I have had this before but not to this extreme, and it did not last this long. It throbs like a toothache would throb.I have tried an NSAID but that has not helped it either. I know I did not hurt it at all, just woke up the other morning with this severe pain. I have noticed my feet lately are looking so thin, (LOL the only part of my body) like there is not enough skin on them, on the top. I have had no fat pads on the bottoms of my feet for over twenty years, and my toes and feet have hurt for a long time, but not like this. Could this be the scleroderma? Is the thinning look from the disease also? I have also started the last few months with my other foot's ankle hurting bad, when I get up in the morning. My feet do not look swollen, but it hurts like it is. Is this something I should let my rheumatologist doctor see? I was just recently diagnoised with Crest, Scleroderma, about a month ago, and do not have a follow up appointment for two months. Any help would be appreciated.
Sincerly
Perfect

#2 Shelley Ensz

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Posted 15 February 2010 - 05:28 AM

Hi Perfect,

I'm sorry your feet are being bothersome and hope they begin to feel a bit better soon.

If it is a new a different symptom, it would be a good idea for you to go to your primary care doctor now, rather than wait on it for two months for the rheumatologist. Then you will have the results and the records from your primary care doctor to take with you to your next rheumatology visit.

In fact, a good general rule of thumb is to get a board-certified internist as your primary care doctor, and then always go to them for every new or worsening symptom. They will be able to diagnose and treat 99% of things and, most importantly, document them for your rheumatologist. Otherwise, we end up over-burdening our rheumatologist with primary care symptoms that they may or may not have the time or inclination to handle (for example, if they think it is due to just a usual thing like a sprained ankle, and not directly to any rheumatological disease.)

Try that, let us know what you find out?
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.

#3 Honey

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Posted 15 February 2010 - 03:28 PM

Perfect,

My feet are like what you described. It was my feet that first alerted me to the possibility that there could be something happening to me other than just pain in the feet. The skin on the top of my feet is so thin and tight that I still have the scar from the skin biopsy that was done last summer. It took forever to heal.

It is very painful, especially at the ankles, with skin peeling and cracking, and HURTING all the time. There is a good possibility it is from the sclero, but mention it to your rheumatologist, and perhaps he will want to view your feet. I know when I was diagnosed, my rheumatologist told me it was scleroderma as soon as she saw the skin involvement of my feet (along with other symptoms).

I am sorry you are experiencing this. It is bothersome as well as painful.

Warmest regards,
HONEY

#4 perfect

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Posted 15 February 2010 - 05:40 PM

Shelley, thank you for you reply. I did not even think about the type of doctor I should have for a primary.I have a nurse practitioner right now. I will certainly investigate this. It makes sense. When I woke up today, my foot felt better, amazing since I could hardly sleep last night because it ached so. Who knows, tomorrow I have to work so I will see when I am done with a 9 hour shift how they feel, and if it starts again I will make a appointment. This diagnosis is so weird to me, I am not a complainer, and I have a high tolerance for pain, I hate going to doctors, or calling them so I guess my attitude is going to have to change.

#5 perfect

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Posted 15 February 2010 - 05:49 PM

Honey, thank you for your reply, I certainly appreciate your sharing with me your syptoms, like mine. I should have been alert to the changes of my feet also, before I did. They have hurt for a long time, but I have worked retail for over twenty two years and thought they were just old feet but the top of the instep where it hurts so bad, should have alerted me sooner. Like you said the skin on my feet is so taunt that every little vein and ripple and bone is sticking out. I do believe that is the disease. After giving it some thought last night, I decided to try massaging my foot, and then kept bending back and forth no matter how it hurt, because I did read that physical therapy is good for this disease,I know I should not just do these things without talking to a doctor, but I had to try something, well this morning it felt better, now whether it helped or it was just time for it to feel better I do not know but I have to work the rest of the week and I will see what happens. I hope you feel better also, and I am so sorry to hear that you have this problem too.

Sincerely,

Susie

#6 perfect

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Posted 15 February 2010 - 05:50 PM

Shelley I just want to apologize for not signing the post, so here goes,
hugs to you too,
Perfect

#7 Honey

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Posted 17 February 2010 - 09:12 AM

Susie,

I know for me it is good to massage and move the joints of my toes and ankles. Otherwise, they stiffen so with more pain involved. Yoga has been good for all of my joints, including the feet. Yoga and physical therapy was the first recommendation out of my rheumatologist's mouth, other than the necessary echo, blood, lung function, skin, and bone density tests.

The pain can be so unbearable that I take gabapentin (neurontin) just to be able to walk. Wearing shoes is almost out of the question, as well as socks.

I failed to mention that my feet started with swelling and pigmentation prior to the pain and skin tightening. That is why I hesitated to see the doctor at first. I thought it was from being too much on my feet. The skin was so tight at the biopsy that the doctor could not stitch the skin, and had to cauterize it. The skin tightening has progressed all the way up my legs, including the thighs. I have lost so much muscle and other connective tissue, I don't look or feel like the same person. But I manage to keep my spirit lifted, thanks to my family and friends.

This disease just sneaked up on me, and now I am learning to live with it.

Regards,
HONEY