Scleroderma, Limited

Posted by dycota13 @dycota13, Sun, Aug 18 10:58am

I have Morton’s neuromas bilateral feet. I had them removed seven years ago but they are back. Since their first removal, I was diagnosed with scleroderma. I’m wondering if this diagnosis will affect the recovery process as last time, it was horrible. I have severe Raynauds only at this point in my disease.

Hello @dycota13, Welcome to Connect. There is a video Q & A by Dr. Leroy Griffing that talks about scleroderma that you may be interested in watching and reading through the questions and answers. Here is the direct link — https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

Did you get a chance to discuss your concerns with your doctor? I'm wondering if they are able to share some suggestions for helping the recovery process.

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Hi. I have seen this video but thank you. I was dx at mayo and now am starting with new scleroderma team at UCSF. I will be asking about my neuromas then. This disease sucks.

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@dycota13 There are a few other discussion where you can find other members discussing similar treatments. You might want to post questions to see if someone can share their experience or helpful information.

> Groups > Autoimmune Diseases > Raynaud's Syndrome
https://connect.mayoclinic.org/discussion/raynauds-syndrome/
> Groups > Autoimmune Diseases> Scleroderma and Raynauds
https://connect.mayoclinic.org/discussion/scleroderma-and-raynauds/
> Groups > Bones, Joints & Muscles > Morton's Neuroma
https://connect.mayoclinic.org/discussion/mortons-neuroma-209f16/

Another seach tool I use that can be helpful for finding medical research types of information is Google Scholar — https://scholar.google.com/. It allows you to sort the links by year so that you can find the latest information easier.

Hope you find some answers and can give us an update after you meet with your new scleroderma team at UCSF.

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hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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Just wondering if you have tried physical therapy for the neuromas. I had a flare up last year.. turns out a new small neuroma. I did physical therapy and things are much better. Still pain, but bearable and I can walk or stand for 30-40 minutes. My therapist used needles similar to acupuncture with a tens machine and a few other things… but the needles with the tens machine helped the most. You may have to ask around as to who does physical therapy on feet. First person I got knew very little, but knew someone who knew a lot about it. Acupuncture might be an option for you. We do not have one in my town.., well there is one for dogs, but that doesn't help me. I will take this over having surgery again. It was a six month recovery for me in 2012.

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@modelmiche

hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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Hello, you could always try mouth exercises /stretching. It helps a little. Facial massages are also a good tool. Borage oil helps the skin. Gotu kola is also one of my essentials. You could take them orally or topically. I've had scleroderma since I was about 12. Keep your esophagus protected. I wish I would've taken medicine sooner for my reflux. My lungs are terribly damaged now. I feel I could've prevented this if I would've known what I know now. Try to stay positive and exercise. Diet and exercise are so important. May I ask how old you are?

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@modelmiche

hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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One more thing,,, i feel the change won't get worse with your mouth. Do the exercises,,and believe me no one notices change but you!! We are our worst critics! Xo

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@fracturedd

One more thing,,, i feel the change won't get worse with your mouth. Do the exercises,,and believe me no one notices change but you!! We are our worst critics! Xo

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Thank you so much for that, we are definitely our worst critics:)

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@fracturedd

Hello, you could always try mouth exercises /stretching. It helps a little. Facial massages are also a good tool. Borage oil helps the skin. Gotu kola is also one of my essentials. You could take them orally or topically. I've had scleroderma since I was about 12. Keep your esophagus protected. I wish I would've taken medicine sooner for my reflux. My lungs are terribly damaged now. I feel I could've prevented this if I would've known what I know now. Try to stay positive and exercise. Diet and exercise are so important. May I ask how old you are?

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I take dexilant for esophageal dysmobility & it helps immensely with my gerd. What kind of foods specifically do you recommend?

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