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Everything posted by miocean

  1. I have a very painful toe right now. There is a hard spot on the tip of it that rubs my shoe when I walk. It hurts so much for such a little thing. My physical therapist is using a cold laser on it. I got rid of another one like it about a year ago but it took a long time. So for now I just grin and bear it and hope it will go away soon.
  2. As I mentioned in an earlier post, I am about to start enbral. This is injected into the thigh or stomach once a week. I am really nervous about this having never done it. Do you inject medication? How difficult is it?
  3. My dr. takes my skin score by gently squeezing my skin in various places on my body and assigning numbers to the hardness. Mine were mostly twos and threes this time. Then they are added up to get the final number.
  4. I went to my sclero specialist yesterday. My skin score has gone from 27 back up to 43. I have been complaining of dry, tight, itchy skin for a while now. She wants me to start injecting enbrel. Is anyone familiar with this? I have to have a TB test first. I'm a little nervous about the whole thing. I am also a little overwhelmed. By the time I left her office I had 8 prescriptions for meds and tests! It will take me a while to get through it all.
  5. That is exactly how I felt when my sclero first started. I would wake up at night with pins and needles and aching hands and arms. I would have to do arm circles to get it to stop. Eventually this went away. I hope you get some relief, I know it is no fun.
  6. Jackie, I am in the same boat as you. I itch everywhere all the time. I have torn my skin up scratching. I use a prescription cream and Zyrtex which just went over the counter. But nothing seems to help. I know it is the dryness of winter that is causing this so I bought a humidifier for the bedroom and it seems to help a little. I w ould appreciate any advice on this as well.
  7. Jackie, I can't answer for the hot flashes as I went through menopause before coming down with scleroderma. I am so cold all the time right now I would welcome them! I can tell you that itchy skin is a common complaint among us. My skin itches so much I have torn it up scratching it. I feel like I have a bad case of fleas. I just bought a humidifier on the suggestion of my rheumatologist so I hope that it helps. I use all kinds of creams, lotions, and oils and found a prescription cream that works best for my skin. The only problem is I use it up before I am due for a refill. And even with my insurance it is expensive. I know hot flashes can be terrible, I hope you find some relief somewhere.
  8. Has anyone tried this or know of it's use in helping scleroderma? My chiro has suggested it to me.
  9. I used to wear a lot of rings but had to stop because they no longer fit. I did have my wedding ring resized and two more of my favorite rings so I could wear them. It is frustrating because some days they are so loose I am afraid I will lose them.
  10. I know cyclophosphamide is good for making the skin softer. I was on a short term IV treatment and it made me so sick I had to stop. I'm sorry to know that others have the pain and discomfort that I do but then again, misery loves company! It feels so terrible being in my skin. And my skin looks terrible, too. thanks for all your replies.
  11. I get those spasms as welll and they are quite painful...and scary. My thumb pulls inward and I have to take the other hand and force it back into position. I worrry that one day it won't go back. I am a dialysis patient and when it happens to me it is usually after a treatment. I assume it is a lowering of potassium in my blood that causes it. I hope it doesn't happen to you too often.
  12. Thank you all for your replies. It's hard to describe what I am feeling. There is such a tightness to my skin, especially around joints like the knee and elbow. When I move a certain way I can feel the skin stretching to the limits on my back and sides. It really hurts and is very uncomfortable. The last time I was at the rheumatologist my skin score had gone down to 27. I started at 45. I want to start a walking program but I am so uncomfortable it is difficult. By the way, I have diffuse sclero. I know skin involvement is a big thing but wondered if anyone else's skin hurts like mine does. I have been wondering if I might be getting contractures but my PT says my range of motion hasn't changed.
  13. I know that sclero affects the skin and makes it harder but does anyone else have skin that hurts? My skin is really dry and itchy but on top of that it actually hurts. It feels like it is stretched to the limit. It hurts to move around and the tightness makes it difficult to do things like bending down to pick up something or putting on socks. Any suggestions? I use a presciption creme and must admit I am guilty of taking hot baths to warm up.
  14. My hands seize up frequently and it is very painful. My thumb moves inward and it is difficult to pull it back into it's normal position. This happens to me frequently after dialysis but occurs at other times as well. I can't have potassium due to the kidney failure so I just wait it out. It scares me because my hands look like they have sclerodactyl and I worry that they won't straighten out again.
  15. My Mother-In-Law is 88 years old. She was diagnosed with sclero about 10 years ago. I remember reading about it thinking this doesn't sound good. Litttle did I know I would also be dxed with the disease! Anyway, she lives in a nursing home now and is in a wheelchair. Her short term memory is gone but she can play games and is able to create words and count points. All in all she is doing pretty well. My best friends mother also has sclero, she is well into her 80's as well. She lives in assisted care and has memory issues as well but other wise does pretty well. She walks with a walker. I wonder if the sclero causes the memory problems or whether that just comes with old age......
  16. Make sure the physical therapist will do a lot of stretching with you and not just put you on machines. I have a great PT who really takes her time stretching me and then has me do a series of exercizes. It has really helped me alot. Good luck to you!
  17. miocean


    I just had a PFT test done last week. I have had several of them in the past. It is usually done at a hospital or a pulmonologist's office. You breath into a machine following the test adminestrators directions. "Breathe normally, take a big breath in, let it out all the way." The hardest part is getting the mouth piece in our small scleroderma mouths, the first time I had the test I could hardly get the mouthpiece in. The past couple of time haven't been a problem, I guess my mouth has gotten bigger. If you have trouble you could ask for a pediatric mouthpiece. Hope this helps.
  18. I have diffuse also. My trunk has started to soften. Even my gyn noticed it! I wish the rest of my body would soften as well, but I am grateful for what has happened.
  19. I have had two colonoscopies. The worst parts for me are the prep the night before and the getting the needle in my arm for the anesthesia. The first time I was semi-awake and watched it on the t.v. viewer. It was surreal to see the inside of my colon and to watch the instrument take a biopsy and not feel a thing! I did have a polyp but it was benign. The second time we were looking for a source of bleeding but didn't find anything. I think it is worth it to have one and make sure you know what is going on.
  20. My screen name comes from the ocean that I live near on the coast of New Jersey. I love the ocean and used to swim a mile a day in it before I got sick. Now I have a catheter in for kidney dialysis so I can't go in the water at all and it breaks my heart. It's "my ocean" but I share!
  21. That is how my sleroderma started. I would awaken at night with my hands and arms asleep and pain in my shoulders. I didn't have carpal tunnel syndrome. I have diffuse slero. So this feeling you are having is probably related, but check out carpal tunnel just to be sure.
  22. I was an art teacher (elementary school) for 27 years before I retired on disability in 2004. My disease hit me like a ton of bricks, very sudden kidney failure, and the disability package they offered was too tempting not to take. I miss the kids and the socialization of the job but not the actual work. I dream about it often enough to say I am still working part time!
  23. I worked for 17 years in an older school in a basement room. Several other people who worked in the basement have developed autoimmune diseases or other "strange" allments. The building had mold issues and next door to it was a carpet company that burned down and the ground was contaminated from it. But in the long run, it doesn't matter where I got it, I got it and just have to deal with it. It does make you wonder though, and I hope none of the children in the school develop issues because of it.
  24. You sound like I feel. I can't motivate myself to do anything, especially household chores. I wonder if I am depressed, if it is the disease, or meds. Or if I am just plain lazy. I also seem to have a lack of concentration, have difficulty reading for example, and I used to be an avid reader. I feel like I put a lot of responsibility on my husband, who is so helpful and understanding. We are having company next weekend and I feel pressure to do things around the house but can't motivate myself to do them. All I want to do is sleep and even that does not come easily. My sclero specialist took me off Zoloft and put me on Prosac because of Raynaud's. I seem to be worse since the change. When I asked my dr. what causes the lack of motiviation she said it was a combination of all of it. I know I should probably see a psychiatrist for proper meds but can't seem to get myself to do that either. I also have kidney failure and dialysis takes a lot out of me. I am wiped out after treatments. I try to get the most out of each day but it is hard. Knowing that there are others in the same boat helps but I wish none of us were experiencing this. Thanks for being there. I don't often write but I read the board every day.
  25. I live at the beach and am outdoors a lot. I go to the beach on weekends and am there all day. I sit under an umbrella and wear sunscreen but I am still very brown. The interesting thing is I am brown even under my bathing suit! My slero dr. says people with scleroderma like the sun, too. I heard that sclero can make your skin darken. I stay tan all winter. The only thing is I have blond hair and blue eyes so I get a few stares from people. In the off-season I am always being asked if I went away.
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