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annie b

I'm new and scared

22 posts in this topic

Hi,

 

I am trying to learn my way around this site and how to use the computer to be in touch other than by e-mail. Self taught computer/typist and lots to learn.

 

I have finally had a diagnosis and will begin a type of physical therapy soon for this is progressing quickly. I am very constricted in my lower legs and feet, the ankles hurt a lot. I was told I would be getting massages and exercises to do, seems there is something else but I can't recall. I will have an MRI on the 30th to check my arms for they also show signs of it progressing in them below the elbows (where I had polio as a kid) so I am not surprised that weak area is hit again. I am having pulsating pain in my back (as of this week) sure hope this isn't a new symptom. I can't have the ultra violet lite treatments for the constriction has gone so deep, but with the massage it may break it up enough to try it. The place to go for such treatments is a 2 hour drive in very heavy traffic so I am not sure how or if this will work out. One day at a time. I am on predisone and another drug that I will ease into if the liver doesn't get destroyed in the process and then be weaned off the predisone. What are you doing for your treatments? I guess we learn a lot from each other. I have found a diabetic cream that adds oils back into my very dried out and burned skin on my legs. Do you have any hints or suggestions for how to deal with this? I take pain pills throughout the day, but with the new meds I have been able to cut back. I am into my 9th month of dealing with this, but can tell by looking back it has been in progress for several years and then all of a sudden took off at 100mph last May.

 

Thank you for writing to me; I so appreciate the support and want to support you and others too, seems like a sisterhood.

I wish you a pain free holiday.

 

Your new friend Annie B

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Annie,

 

I have burning, numbness, pins/needles feelings. Try a neurologist. My turned out to be small fiber neuropathy that affected not only legs/arms, but my autonomic nervous system. They think it was from sjogrens secondary to scleroderma. It was detected by skin biopsy not an emg. I hope this helps.


ANN

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Thank you for the suggestion. I will ask my dr. I was supposed to see a neurologist and I was canceled.I sit here and my hands go to sleep. The dermatologist thinks I have two things going on - the poison ivy like blistering has to be something else maybe caused by very low blood pressure and it could be the numbing too. I never thought much about that. Getting all the puzzle pieces together sure is going to help. And someone sent me a link to a support group that meets once a mo.and it is only 25 -30 miles away! Joy... I am so sorry that you have to deal with such yourself. I tried some Melatonin last night and had nearly 5 hrs. of sleep (in a chair) in a row :) A first night of sleep in a long time. I bought a computer scrabble game and played until the wee hrs. - lots of new ways to enjoy life~

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I have two questions to you; I don't think it appropriate to post but don't know where to find truth and want it to be~

 

One, will peanut oil help with my bone dry skin? I have tried so many things and nothing works.

 

Also, should I not eat from the Night Shade family of foods due to the scleroderma? I love the plants in the Night Shade family and giving the up is very hard, but I would do anything to help my body heal. They are the potatoes, tomatoes,peppers, egg plant etc.

 

Oh, and I am having such a time finding calcium that doesn't cause nausea with my other drugs such as the prednisone and the methotrexate. Is this a common problem? My dr. is 75 miles away and not very available for routine questions; I will see him on the 12th but that is a long time to wait. If you are comfortable to help me with these questions I thank you now and so appreciate what you can share. I realize you are not a dr. but you have so much experience and knowledge.

In much appreciation for you help.

Annie B

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Annie,

Dry, itchy skin is a big problem for many of us. I have tried many things with very few successes. We do have a page on dry skin (xerosis) that offers suggestions. For me I have found that an oatmeal based lotion works best, but others have found it ineffective.

 

In reference to the nightshade vegetables, again - it is a personal thing. This article from About.com on Rheumatoid Arthritis and nightshade vegetables has some good information. Apparently, there have been no scientific studies to show that any one food or groups of food affect arthritis such as RA or scleroderma. Personally, I feel that one's dietary issues are a personal thing. For example, I have had to greatly reduce my consumption of dairy. For me it causes post nasal drip that stirs up reflex and increases my nagging cough. You might check out our section on Diet and Scleroderma. It discusses good and bad diets, good and bad foods for scleroderma.

 

I use to take methotrexate and my rheumatologist told me to spread the pills out between meals on the day of the week that I take them. By doing this, it eliminated the nausea problem. You might give that a try.

 

Hope this helps.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Interestingly enough, I too have the pins/needles, tingling, burning and muscle twitching; I don't have any skin tightness as of yet but got down to 5 mgs. prednisone daily last month and my whole body started burning, kind of like inside out.

 

I am going to UAB in Birmingham later this month. As I was telling the rheumatologist yesterday, if you took away the pain, I'd feel okay. She wants me to try the Lyrica until my appointment at the sclero clinic. Do any of you have the jerky, muscle twitching, burning pain?

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Annie I'm so glad they are getting you into some treatments. I so hope they work for you. I have found that there is a pain management clinic in our town so after my quarterly appointment with my rheumatologist next week I'll see what he has to say. So sorry to hear that your disease is progressing so fast but good for you for staying on top of it.

 

From what I've seen with this disease every single person is affected differently but yet there are such similarities. For instance, I've had such terrible pain in the bottom of my feet and my heels and now I find out that this is from the sclero wearing away the cushion in the bottom of the feet. There are so many things this dang disease seems to affect.

 

I'm anxious to see how my quarterly appoinyment goes. I have had some terrible reflux attacks again and to have that stir up again isn't comforting. What happens is I wake up in the middle of the night feeling like I'm being burned alive from the inside/out. So I take what they call a GI cocktail that numbs the esophagus and throat and keeps the acid down. Lately I've had to take 4 to 5 of these cocktails before the burning quits and then I throw up from the cocktails as they are terrible. So I guess it's time to see the gastroentorologist again as the sclero must really be hitting my esophagus again.

 

I'm glad you are getting used to navigating the site. I look forward to hearing more from you on how you are doing. I so hope you are getting the help and relief you need.

 

Warm hugs,

Peggy

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