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Marie W

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About Marie W

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  1. Hello Everyone: Hope everyone is doing good. I wondered how many of you have stomach problems? I am really having a lot of difficulty after discontinuing Zelnorm. I really have a hard time going to the bathroom, not to mention the stomach aches. The worse part is the terrible flatulence I have constantly. It is really embarrassing I take gas-ex all day long, drink tones of peppermint tea and take beano before meals. Nothing my doctor has given me has worked. I have tied everything. I recently had a colonoscopy which showed I have diverticulitis. I was treated with antibiotics for that. I also have Gerd, but it is controllable with nexxum. Any one got any suggestions? Thanks in advance. Marie W
  2. Nan: Sorry to hear about your toe pain. Makes walking difficult, doesn't it? One of the first symptoms I had, before being diagnosed, was toe pain. Only it started in my two smallest toes, before spreading to the rest of my feet. My toes were red, painful, tight, and tried to curl under. It was so bad at first, it was to painful to walk. I had to take a lot of prednisone, which I tapered over several weeks. I stand on my feet on day at work and it was impossible for me to take off, since I work in a very small office. Hope you feel better. Marie
  3. Kamlesh: I feel your pain. I have struggled with sleep problems for many, many years. I can sometimes go to sleep, but can't stay asleep. My doctor has tried me on every sleep med on the market. None of them have really helped. Hopefully you will found one that works for you. You may have to try several. There is a new one, Rozerem, that doesn't have a lot of side affectss or cause morning brain fog. It is also non-addictive. I have taken it and it has helped somewhat, actually more than of the other more intense meds. Best of Luck, Marie
  4. Thanks to everyone for their advise. I have tried several different antii-inflammatories and Mobic seems to be the only one that offers any relief at all. I forgot to mention that I have Fibromyalagia also. That was diagnosis years ago along with the Sjogrens. The pain from the Sclero is a lot different and more intense. I just can't take pain medication. They all make me dead tired and wide awake and I don't sleep well as it is. Marie
  5. I would appreciate any advice from any of you gals/guys affected with severe joint involvement. Every singe joint is killing me, even my spine hurts!. It has gotten really bad the last couple of days My toes and fingers are swollen, painful, and wanting to curl (esp my toes). I am on prednisone, placquenil, mobic, motrin 800, and a pain medication as needed (but I can't stand to take the pain med). I have tried warm/hot baths, heating pads, and topical meds. I called my Rhemy he had me up my Prednisone. Any one find relieve from anything else? Anyone think the weather change is a factor? Marie
  6. I seem to be going through all the "stages". I have already passed denial, now I am on anger. I tried to discuss this with my husband, but he didn't understand. I have no idea how to get through to him or make him understand what I am going through. I feel like there are so many things I want to do but don't know now if I will get to. Who knows how the disease will progress? I have tried to be positive, but sometimes it is hard, especially since I am not really sure if he is going to stick around. I never realized what an insensitive, selfish person he could be until recently. I have asked for more help around the house and with the dog (his dog) but he is too busy playing on the computer all day. He is a firefighter so he has lots of extra time off. I am starting to feel like I am married to a kid who can't handled the responsiblity. I hope I don't get on anyone's nerves by venting so much but I don't have any support. My parents are deceased and I really don't have any family. I am always so busy with work and "use to be with my husband" I never had much time for my friends. By the way, I have showed him tons of Scleroderma Info. it didn't help Marie
  7. Thanks so much for all of your support. One of our problems is, my husband is 10 years younger than me. We have only been married 4 1/2 years. We dated for 4 years prior. I had been divorced for many years. The age differance really bothered me. My husband had never been married and didn't have any children (I have 2 grown). He repeatedly assured me he didn't want children and he really wanted to get married because he loved me and we had "some much in common". I resisted for 2 years but finally gave in because I loved him. I can't help but feel he is not going to stick around. I never realized until I got sick that he is really not a very understanding person and that he is really quite selfish. I saw the signs before with other people, but I guess I choose to ignore them. Such as it is, I will have to deal with whatever happens. Marie
  8. I really have to vent. My husband just really doesn't understand what I am going through. He is a very active person, as I use to be. He thinks if I get back to the gym and lose the weight I have picked up( because of all the prednisone I have taken in the past several months) I will be "just fine" He doesn't understand how much pain I am in and how tired I am, maybe because I don't constantly complain. I have difficulty some days just climbing the steps in our home. I am still working every day. My self- esteem is at an all time low. I have gained about 40lbs! and haven't been able to work out for several months. I know part of his problem is we use to do a lot of things together that I am not able to do anymore. Does anyone else have this problem?
  9. Dear Nan: I feel your pain. When I first starting having symptons, my feet, hands, and wrists were the most painful. My toes were very swollen and my whole foot(s) burned and hurt like crazy. It was really tough since I have to stand on my feet all day. It got so bad I could hardly walk. I had to take mega doses (80mg) of prednisone for several weeks tapering to a maintance dose of 10mg. Some days I have to up the dose to 15-20mg. My 2 smallest toes are really starting to curl, especially on my right foot. Anyway, I hope your feet start to feel better. Marie
  10. I have worked in a medical office for 22 years. You doctors HAS to release your records regardless. Have your new doctors request your records. You will still have to sign a release from his office. Your old doctor is probably just angry that you are going somewhere else. I have worked for a few with that kind of attitude If he won't cooperate with you, call the board of medicine in your state and report him. Marie
  11. Thanks to everyone who e-mailed me about their meds. I actually left off some of mine. It seems I can't remember anything these days. I have to use a double pill compact which I fill weekly or I would forget to take all of them. Do any of you have difficultly with memory and cognitive thinking? I have gotten really bad the past several months. I am thinking about seeing another Rhemy, one that is a lot younger and more up to date of scleroderma. (the other two are "old") I live in a very small town, there are only 2-3 Rhemys within 25-50 miles. I have to travel approximately 350-400 miles to see a more qualified one. The one Rhemy (he's around 60) said he had only seen about 8 cases of systemic, however he does know another Rhemy at Pittsburg Medical Center and he has consulted by phone with him. At least I feel he is a little bit more informed now. Another question, do any of you have difficulty with burning (neuropathy) associated with your pain. Some of my joints, epecially my feet and toes are affected.
  12. I just got a 2nd opinion from another Rhemy. Now I am more confused. The "2nd opinion" wants to change all my medications! I feel like some of it is finally helping, especially with the joint pain. (I have been on meds for 2 months now). I am currently taking 200mg Placquenil twice a day, 10 mg Prednisone, 15mg Mobic, 325mg aspirin, and 800mg Motrin as need. I am still in the process of having all the additional testing that goes with diffuse scleroderma. I have already had a pulmonary function test and an MRI, but I don't know the results yet. The additional testing will be done next month. Would someone with diffuse, please e-mail me and let me know what meds they are on and what helped and didn't help. I realize everyone responds differently to medications, but at least knowing what other people are taking would ease my mind. Marie
  13. Thanks to everyone who replyed to my post. To the person who has migraines also, I never had migraines until 4-5 months ago. I don't think my rheumatologist has seen many cases of scleroderma, so I don't think he really knows what symptons are from it. I have made an appointment for Jan 24 to see a Rhemy at WVU whom treats a lot of patients with scleroderma. She is a younger MD and up to date of the disease. I have so many symptons, I don't know which ones are related to the scleroderma. Again, thanks everyone. Marie
  14. Dear Peanut: I was recently diagnosis with scleroderma, although I have had symptons on and off for about 2 years. It just became very aggressive the last 4-5 months. I too have a lot of difficulty with my right hand and right foot. Some days the pain, stiffness and weakness is so bad in my right hand, I can hardly hold a pen. All the joint pain and stiffness has always been more prominent on my right side. I understand your frustration. I have too work everyday regardless and I am right-handed. I wish I had some advise for you, but all this is new too me. I don't know anyone personally with scleroderma, so this website is a god sent. I also have sjogrens which I have had for at least 25 years. It is all pretty frightening to me. I am starting all the additional testing that goes along with the diagnosis this week.
  15. I was diagnosis with systemic sclerosis a few weeks ago. I have been having severe symptons since June. It started out with a lot of pain, burning, and swelling of my toes. I also experienced a lot of pain in my hands as well as my other joints. I was having severe migraines also. I am doing better after several weeks of taking prednisone. I wondered if anyone else experiences migraines. I also wanted to know about meds, my Rheumologist told me Placqenil wouldn't help, but on the Mayo Clinic website it says it will. I am considering getting a second opinion. Any feedback would be appreciated Marie W.
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