Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About KarenL

  • Rank
    Silver Member

Recent Profile Visitors

1,093 profile views
  1. Hi Tootired, This happened to me too, two heart attacks in 2 years at ages, 47 and 49. I don't smoke, have good cholesterol, no family history, etc. the doctors insist it's not related, but they can't give me a good reason why it happened either. I'm on Plavix, aspirin and fish oil to help it not happen again and so far so good for 4 years. Keeping my fingers crossed and hope you get answers! Karen.
  2. It does take a lot of perseverance to get insurance to pay. My doctor and I wrote letters, and attended meetings via phone for 6 months and was finally approved. Don't give up! Another great invention are hand warmers that hunters use. They come in little foil packets and fit in the palm of your hand. You can buy them at sporting goods stores. For exercises to get an acute attack under control try 'windmilling' your arms round and round. Oh and I have an electric blanket next to where I sit on the couch. And a neck warmer you can put in the microwave. Feel better!
  3. I have had Raynaud's with my sclero for wow, almost 20 years now. Tried the Norvasc, and the nitro. No good. I have had ulcers, and even lost the tip of one finger to gangrene. Now I'm on Revatio, a type of Viagra. I take it three times a day and it helps a lot. The headaches go away with regular use. I use it faithfully from September to May and sporadically in the summer. It's crazy expensive and took a lot of begging from my doctor and I to get it approved through insurance. It was worth the trying because gangrene is the most horrible thing you can go through. Keep fighting!
  4. In answer to some of your questions; I've already had three heart attacks and three stents. Never heard about the "diffusion" issue but it makes a lot of sense. Will look into that. Thanks for the ideas and support everyone!
  5. Hi, Bowel problems were the start of the whole thing for me. Not sure if they were related, but my autoimmune stuff started with ulcerative colitis. I suffered for three years because I was nursing a new baby and finally had to have a total colectomy. No ileostomy though I had what is called an ileo-anal pull through, or J-pouch. Way better than colitis! Hope you are not too sick, just so you know there are options. Karen
  6. Hi all, Haven't been around here much, mostly lurking and working the evening shift at work. I have noticed over the last year or so, I have almost no exercise tolerance. It's very scary and mainly depressing. I can't even walk a couple of blocks on flat ground without stopping. The last PFT's showed "normal" but my body says NOT NORMAL. My heart beats hard and fast and I just have to stop. I'm only 53 :(... Even when I get on my stationary bike I have to stop, the pain in my feet is immense. I'm way overweight, 220 at 5'4" and my doctors say "Lose the weight and you'l
  7. Thanks ladies. I am a nurse now! Working at a nursing home and loving it. I was finding that when I stayed at home too much, looking at the computer and reading about all my illnesses, I was getting depressed. Getting out in the world and caring for people worse than me helps me a lot! I'm still here, just not as active. Peace, Karen
  8. I use revatio, 20 mg 3 times a day. It's the same drug as viagara, a vasodilator. Approved for PAH, and it took a fight to get it for me, but my doctor is awesome. As to the nitro paste, be careful NOT to put it ON THE ULCER ITSELF!!! Put a tiny bit around the base of the finger, nearest to the hand and cover with a band aid. The headaches will subside, but do it at bedtime at first. Good luck. Karen
  9. Hi, I have had a thoracic sympathectomy, actually two or bi-lateral. What they do is go in under your arm with a small scope and camera. They cauterize a nerve that is responsible for the contraction and dilation of the small blood vessels in your hands. It worked for me on one side but not the other. I'm not sure of the success rate, but if it doesn't work, it's just the same as before. The hand where it did work is warmer than the other but still can get attacks. Kind of depressing because the change is not huge if it does work, and you go through a surgery for nothing if it doesn'
  10. Hi all, It's been awhile since I've been on the boards. Love the new look! :) Went to my rheumatologist recently and pointed out to him my strange toenails. They are folding in half like buckling up in the middle and digging into my toes, forming little tents or triangles. Anyone else have this or any information? Should I go to a podiatrist, file them, or what? Thanks Karen
  11. Lansolprazole is now available as a generic and OTC if that helps.
  12. The key word here is "healthy" people. Aspirin probably shouldn't be taken on a regular basis for no reason, agreed. But if you have been diagnosed with atherosclerosis then you do need it and the stomach issues are on the back burner compared to the heart. I've found that having scleroderma forces me to make decisions like this all the time, what to give up or not, in other words prioritizing.
  13. Hi Sam, Most people slouch and it's because of habit and tiredness. I go to a chiropractor too and she taught me what to do. You have to strengthen the back muscles. You sit or stand nice and tall then force your shoulders down and back. you squeeze the muscles in the center of your back inward and hold. Like you are trying to press your shoulder blades together. Do this as often as you think of it. Also if you can get to a gym, do the pull down bar with your shoulders in the down and back posture. Pull the bar down towards your chest, squeezing those shoulder blades together. The chi
  14. If you get the doctor to prescribe the generic you can get the full 30mg strength for generic price, mine is five dollars! I take two a day. You have to take them on an empty stomach, a half hour before a meal or they won't work. Also you have to take them the same way every day. Try that see if it helps.
  15. Raynaud's really hurts. Your fingers are SO cold that it is extremely painful, then when you try to warm them by running under warm water it hurts even worse. Raynaud's makes people look at your hands and say, what's wrong with your hands!!! Your fingers can almost always turn some shade of grey/blue even in air conditioning. Even if it's just spring and the temp is below say 75, you're cold. You wear coats and blankets when others are still in T-shirts. September is the start of winter for people with Raynaud's and it's not spring till June. Swimming? Forget it, only in hot tubs. The onl
  • Create New...