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About kris52770

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  1. Hi Ann, Greeting from the East Coast... Thanks for the good wishes. Hopefully this will blow in and out quick and with no damage. My thoughts are with everyone this weekend. Stay safe.....All the best Christine
  2. Hi everyone, It's been a while...I checked out to fight the good fight that we all seem to know so well. I have kicked screamed and thrown fits :temper-tantrum: finally I am in with the sclero specialist. :emoticons-line-dance: My appointment is September 8th. I am not sure what is going to happen but at least I will know if I ever have this. Hopefully either way I may get some answers finally...11 months and counting with no definite answers just lots of symptoms and a positive skin biopsy. I will keep you posted and even though I do not post often. I think of you guys everyday. Wishing you all the best, :emoticons-group-hug: Christine
  3. Jo, Congrats!! What an accomplishment!!!!!! :emoticon-congratulations: Christine
  4. Hi Snowbird, Finally something I can pipe in about living in sclero limbo. But what they are sure of is that I do have morphea/linear sclero confirmed by skin biopsy. It started on my upper back and boy did it itch for months. In my case I noticed and the regular doctors kept blowing it off. When I started noticing skin changes on my neck and face I went to a dermatologist myself. This guy was great, took one look and took a biopsy. I can tell you that it has not gone away and it spreading slowly. I do believe that it is affecting the muscles. Morphea, at least to me, feels like the skin being eaten from the inside and your skin randomly hurts throughout the day. You start to see depressed areas. In a way I have been fortunate that I can still easily cover them with make-up and hopefully that is the way it will stay. There is definite muscle weakness and I am using physical therapy to work on that till I get in with the sclero specialists. Hope that helps a little. All the best, Christine
  5. A big Hello to everyone and hope everyone is holding their own. Finally got to my doctor and the referrral to Boston to see the specialist (believe me I had to fight for it) and am now waiting for the appointment. This is such a long and frustrating process...sigh. They put me on Plaquenil and after a couple of months I started getting really sick and actually feel worse on it. I was wondering, has anyone else had side effects from this drug? Thanks in advance for the input :) Big Soft Gentle Hugs, Christine
  6. Hello everyone, First I feel I must apologize for flaking out the last couple of weeks and not being as supportive as I should be. I just needed to mentally check out for a while after the last rheumatologist appointment. So here it goes..I went to see her on May 5th and she asked where I am at. I told her that it feels like the muscles and skin hurt all the time. She stated that all the tests for heart,kidney and lungs came back ok. My scl-70 came back negative but the skin biopsy came back postive for morphea. She stated that she feels it is only skin related but she can't be sure. I told her that on top of the skin and muscle my feet hurt terribly and with my job on my feet all the time this was not helping. My job is not flexible and I try to stay off my feet as much as possible. I have more skin involvement than I did a couple of months ago including some very painful spots on my back with are all rough now. My hands are different degrees of red all the time but I never see the blue and white that you guys speak of. Hurts to type not and they are tight. I have what they call pale white plaques that are slightly indented. Also I noticed that my mouth is sore to open. They are waiting until June 9th when I have a second skin biopsy to see the results before setting me up with the specialist. I guess my question is does anyone else have the feeling like the muscle and skin are being eaten from the inside out? The rheumatologist looked at me like I was crazy when I told her this. However I did hear the dermatologist state to his assistant that there was muscle atrophy on my back in the same exact spot that has been so painful for me. Am I crazy? Hopefully someone can give some insight on this...again thanks for all the support from you guys. Hope everyone is doing well and you are in my thoughts... All the best Christine
  7. Welcome back, So sorry you are having these issues. I can totally relate I have swelling in both legs and my feet are very waxy as well. I also have to do alot of walking and standing during my 9 hours shifts at work. One of my biggest complaints is the stinging in my feet. Some days they hurt so bad I can barely walk at the end of the day. My rheumatologist told me that she doesn't feel it is related at all. I do not believe her to be correct. She is sending me off to yet another doctor...boy this gets old quick. Hope you get some much needed relief and we are all glad you are back :emoticons-line-dance: All the best Christine
  8. Hi Craig, Well that was kinda depressing but very true. Sadly for me my employer only offers short term disability and no long term. So I am covered for six months and that is it. I have tried a few companies and believe me the rates are very high IF you get approved. In your case I am glad you have found a reasonable solution. Chopper, I didn't ever think of this either until my rheumatologist told me to try to secure this now but I believe I am in too far at this point. You are so right about them wanting the customer until you use them. All I can say is that my fear of doctors kept me away for many years that I still had to pay for and now in the last six months it is catching up with them. Really wished I had thought of long term in my twenties and no at 40 never thought I would be dealing with this stuff so young. Just trying to make sure my nine year old will be all set as well just in case. I have a whole different way of looking at things now. All the best. Christine
  9. Hi Jo, Thanks for the response.We have SS disability as well. I was trying to think ahead with a private insurance to supplement that. I think we all worry about the what is going to happen in the future. As of right now I am still able to work full time but my job requires me to be on my feet most of the day. I thought I had a shot with no organ involvement as of yet ( fingers crossed) but the arthritis of the legs and feet is what has me thinking about this. Hope you are well. Christine
  10. Well as the story goes, I tried to apply for long term disability as the doctor told me I should before they put the firm diagnosis in the records. What a surprise, denied by three private companies already based on the amount of testing and a very very lengthy medical records over the last six months. Anyone had any luck in this area or is it just too late? Hope everyone is holding their own. All the best, Christine
  11. Hi Marsha, A hearty welcome from the East Coast..As I am learning very quickly we all are very different as far as symptoms go. Everyone path seems slightly different and what affects one may not affect another. I am still on my path to getting answers as well. I can tell you that I have a lot of issues with skin changes, tissue and muscle changes. They have a wonderful scleroderma clinic in Boston with specialists.( a little bit of a trip for you but probably well worth it)Try to take everyday as it comes. I too felt like no one understood what I am dealing with both physically and mentally,alone. However you have friends here that completely understand.. :emoticons-group-hug: Christine
  12. Hi Everyone, Just wanted to take a minute to wish everyone a Happy Holidays...Thanks for just being you.. :emoticons-group-hug: Christine
  13. Hello. Sorry that you are dealing with this. I can tell you that I have been doing PT for several weeks now for the same thing on the left side. Shoulder and the elbow and back with no injury to speak of. I have a lot of skin involvement with tissue inflammation and muscle weakness. My elbow hurts to even rest it on the table. PT helps some but I have to believe somehow this is related. Have 3 herniated discs which was very surprising to me. My pain feels more muscle tendon related. Hope that PT brings some relief. All the best. Christine
  14. Good Evening, I was wondering if anyone else has skin involvement. I have swelling in both legs but I also have the sensation of throbbing in my skin and muscles. This is pretty constant. Sometime it feels like it is all the way to the bone... Ouch....My feet ache terribly. Does anyone else have this much skin involvment? Christine
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