Jump to content
Sclero Forums

KarenL

Members
  • Content Count

    213
  • Joined

  • Last visited

Everything posted by KarenL

  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'll feel better". Obviously that's true, but how to lose weight when I can't exercise? And the symptoms are not just weight related, I KNOW my body! Even walking from the parking lot to the building I work in is hard. Especially when I am carrying a heavy bag, then it's worse. Any suggestions for building exercise tolerance? Each of my doctors looks at me through their specialty eyes, especially the cardiologist who says "just do it" like a coach, forgetting about the sclero, fibro, arthritis etc. What to do, what to do... :( Karen
  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't. Also--the side effect--excessive sweating on the side where it didn't work. That's because the nerve they cut is the same one responsible for perspiration. If some has excessive sweating, they cut that nerve and the sweating stops, so that happens to us too. No sweating if it works, but for me all my sweat is on one side of my body! Weird and uncomfy. The sympathectomy they do on the hand itself was not recommended for me, because my doctor says I have so few blood vessels in my hands I would never heal. Good luck in your search. Karen
  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. KarenL

    Slouching

    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 chiropractor says that pain is a signal that something is wrong and is not to be ignored. I thought she was crazy to suggest that exercising would cure the pain I felt from slouching but in about a month of these exercises I have become nearly pain free and don't slouch! I am much more conscious of my posture and carriage overall. One other thought, going to a chiropractor shouldn't hurt the next day. Make sure you have a good one! Karen
  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 only time you are comfortable is when everyone else is BOILING. In the winter your hands are white and hurt really badly. The tips crack and ulcerate and a tiny crack can feel like a laceration. One year I got gangrene and my finger died right down to the bone. I was on strong pain medications for 8 months and was referred to a pain specialist. You carry mittens everywhere and they multiply in your house and car like bunnies. You are angry with co-workers who turn on the fan and you fight with everyone about the AC in the car. Yes, I have it bad, but I hope I shed some light on the differences between just cold and Raynaud's. I hope you don't have it!
  16. I found my lab report and my creatinine is 1.02 with a reference range of 0.6-1.10 My GFR is 57 and the ref range is >60 does this mean anything? Also they were looking for thyroid issues to explain the weight gain and extreme fatigue and that is 2.05 for the TSH 3 and T4 free is 1.0 both seem to be normal...so why am I so tired? I mean so tired I fall asleep anytime anywhere. Sometimes I pull over in my car to sleep or just put my head right down on my desk. karen
  17. Hi Janey, Thanks for the warm welcome back! :) I have been checked all up and down my limited GI tract. I have more info to fill in, I also have celiac disease and no colon at all. It was removed in 1995 due to ulcerative colitis. So I definitely have absorption issues. The celiac was undiagnosed until 2 years ago, when it was discovered I had osteoporosis at the age of 48. I do know about EPO, looking at my recent blood work I do not see creatinine was done. My RDW, is high meaning that my red blood cells are not all the same size which causes oxygen to not be distributed equally. I will read the article and keep on top of this. Thanks for the replies. ! Karen
  18. Hi all, I haven't written in ages, busy with nursing school and just lurking every so often. I had been getting iron infusions and my Hct and Hgb were almost, but not quite normal. My ferricet became normal so the doctor said he can't give me any more, but my red blood cells are still down. I'm so drowsy all the time, I fall asleep in class and at the computer. Now my hematocrit is 30 and my hemoglobin is 10. Is there some other way to feel better? My hemotologist says 'see your primary to find out why else you might be tired'. I think we all know where that would go...see my primary? Useless! Any ideas? Thanks Karen
  19. Sounds like Flolan. Not a new drug, but new to you. I have used it for for Raynauds and it doesn't work so well for that, but continuous for PAH it's supposed to be great. You will feel hot and flushed at first, the nurse will sit with you for at least a half hour to make sure you're okay. The port is a little uncomfortable at first but you get used to it. Give the whole process some time, because it's a little weird at first, you will get used to it. Karen
  20. The mouth is part of the GI system which is affected by sclero. You can have ulcers anywhere along the alimentary tract, from mouth to anus, so yes, canker sores can be related. A good way to avoid them is to avoid sugar and faithfully take lysine 1000 mg every day.
  21. Unfortunately the emergency room won't know a thing. I had this and did lose part of a finger with gangrene. I've tried all the above mentioned remedies, and the only one that works is Revatio, a Viagara type drug taken 3 times a day 20 mg each time. It is so good, that I stupidly stopped taking it in the summer thinking to save some pills. (without insurance, a one month supply is over 3000 dollars!) thank goodness I have ins....anyway, when I stopped taking it my finger started having the blues and the fingernail started separating from the finger, all my symptoms of impending gangrene....I started taking it (Revatio) again post haste and the destruction turned right around. The nail stopped threatining to fall off and my finger only turns blue when I am super cold, like in restaurant AC. Revatio is getting easier to get approved, but it sometimes takes awhile. I'd research a get to your doctor tomorrow and beg for it. Otherwise you will get gangrene. It is not easy, it takes almost a year to lose a finger tip and you will be on multi --heavy duty opioids to alleviate the horrific pain. Get going NOW!!
  22. Hi all, I've been anemic for years and finally began iron infusions with a chest port last year after a transfusion. Also B12 shots weekly and then went to monthly. Also I take B12 orally every day. When the doctor stopped my infusions because my ferritin values were high, my hemoglobin goes down along with my hematocrit. I get sooooo tired it's like being drugged. What's next I wonder? How to keep the iron up and the ferritin normal? anyone else have this issue? Karen
  23. Hi Summer I had the body soreness to and was diagnosed with Fibromyalgia. I am currently on Cymbalta for it and it's helping. Good luck, it's a tough one! Karen
  24. I use Revatio now, it's similar to viagara and it's working. I still get Raynaud's attacks but they are shorter duration and not quite as bad. No horrible infections this winter, just one little one that I dealt with using bandaids and neosporin and one finger that keeps threatening to ulcerate, but hasn't. So maybe the Revatio might help?
  25. Hi Judy, I feel your pain. Been through exactly what you going through. It turned out that the doctor would not even consider an amputation because of the lack of blood flow to the area, he said it "would never heal". Here's what they did, maybe it can help you. First they did bi-lateral thoracic sympathectomies, one at a time. To make a long story short, they go into the nerves along your spine that are responsible for vasoconstriction in the fingers and sever the nerves. It is supposed to stop the constriction of vessels. It worked on one hand but not the other. The side effect is I don't sweat from the waist up on one side, apparantly they also use this operation for excessive sweating, and so on the side it worked on, I don't sweat. The finger that was "going bad" did indeed cause hand pain so severe I was screaming in the ER. They put me on increasing doses of a strong pain medication until I became tolerant, then went to stronger meds until finally I was on a patch for almost a year while my finger amputated itself with gangrene. Just the tip. Now I have this tiny sort of hooked finger left. But the memory of that pain is still there! I'm so sorry for you! Ask your doctor about the sympathectomy, it's worth a try and may stop the necrosis from spreading. I wanted an amputation too, Just take it away! was how I felt, I didn't want a year long ordeal while my little black finger slowly died but they explained how it would never heal if they cut it off. Now, I'm glad they didn't. Unless I point it out, not too many people even notice. I wish you lots of love and luck in whatever you and your doctors decide. I too only have one artery in each wrist and have to baby my hands constantly. Love and hugs, Karen
×
×
  • Create New...