You seem to be a veteran at this autoimmune stuff...... I'm hoping you would answer some questions for me. First of all, what are your scleroderma symptoms? My Dr. has mentioned that to me several times, and I certainly have some skin problems, but they seem so much different than the ones mentioned when I researched it.
Also, what meds seem to help the most for you?
I'm with your daughter on this Dr. hopping bit ............ who has the time or energy to go to a different Dr. for every new symptom!?!! Since rheumatology is their specialty, and we all seem to get the multiple diseases, you'd think that the treatment amd their education should be all inclusive.
Over the years I've dealt mostly with the lupus part, but was diagnosed 13 years ago with mixed disease. My skin seems to have gotten thicker and hardened in places. Your organs can harden also. A friend of mine died New Year's Eve waiting for a heart/lung transplant. You can have trouble swallowing. That's what she started with and went undiagnosed until she went to San Francisco, but it was too late. We have 3 rheumys in town and I won't go to any of them. My neighbors brother went to one who said it was "in his head" and died 2 years later. I had a hysterectomy and they left a syringe cover in me which resulted in 4 more surgeries. My 4th surgery was for a hernia and my body rejected the mesh and I got gangrene. That left me with an 10 inch hole in my stomach and on a wound vac at home. The surgeon said my scleroderma was so bad inside that he could not suture anything closed because my tissue shredded. I've looked at all the other pictures and I don't look like them. One doctor that was great(she retired) said and I quote "you're just going to get weird stuff." If you woke up with something new she just had you come in immediately without an appointment so she could see it.
They don't make them like that anymore. Prednisone makes me nuts. I can't stand it and I gained 30 lbs in 2 weeks. I prefer aristocort which is a cortizone. I feel great on it. My pain mgmt doctor gives me a 21 pac every 3 months since I've been waiting over a year for my rheumy referral. I refuse to take plaquenil. It gives me terrible headaches. I was on arthrotec which really helped but made my platelets to slick and you bleed easier. Now I'm on alot of antidepressants, pain meds, muscle relaxers, xanax. I keep a bottle of liquid Carafate on hand if my ulcers act up. If I have alot of ulcers in my mouth then I know my stomach will act up soon. One of my antidepressants is Neurontin which really helps with nerve damage pain. As you know, without sleep, we're a mess so the doc gave me another antidepressant called Remeron. At a low dose of 15mg, it works as a
sleep aide and it's not addicting(like it matters now)LOL I hope this helps. Just take one day at a time and hope they find something useful soon. I told my husband I wanted to donate my body to science, but he said they probably wouldn't want it.LOL Good luch to you and I'm really glad I found this place. Sandy B
Thanks for the reply. Geezz, I applaud you for going on 'one day at a time' so bravely!! I already have a paranoia of needing any medical procedures because nothing heals, but my fears must seem ridiculous compared to what you're experiencing. Your 4 surgeries because of a forgotten syringe is a prime example of why the President's cap of 250,000 on malpractice is ridiculous. It probably cost that much for the surgeries themselves, not to mention the pain and lost productivity. Sorry, I'm really obsessing about this ever since I heard of the lady who had a double mastectomy (sp?) in our state, and it was found she never had cancer. She would get paid less than the spilled coffee lady???
Like I said, my skin doesn't seem to heal (Lupus or scherloderma?). I had carpal tunnel surgery 9 mo. ago and there's still pain in the palm of my hand (I'm guessing it doesn't heal internally either). The swelling was sooooo bad that they used ultrasound, but it seemed to have the reverse effect on me and made it worse. I need my other hand done but I totally refuse. My skin also hardens and dies at the ends of my fingers and toes, but I think that's from the Raynauds. I have spots on my face that seem to finally heal and peal, and then the sores start all over again on the same spot. A paper cut takes about a month to heal. My skin is so dry and gross looking too. I have to go to the podiatrist this week cause of some severe heel pain (another Rheumy referral :-) and I've put it off cause even I get grossed out to look at or touch my feet.
How do they tell if the disease has affected your internal organs?? I suppose only by opening you up for something, huh? You said the good retired Dr. had you come in every time you had a new symptom, why? Was she really able to do anything about them, or did she just want to monitor the progression. My rheumy always writes down all my new aches and symptoms, but never seems to explain them or do anything about them............ unless he can find an opening to refer me to another specialist!!!! I also get sores in my mouth periodically, but they really don't hurt or anything.
I refused to take the prednesone too. I am on the plaquenil, without any side effects that I 'm aware of. It took a long time to kick in, but it seems to have helped my joint pain a lot. I'm hoping it slows down the progression like they claim too. I've tried several meds for the Raynauds, but none worked .............. and our high temps this week are supposed to be below 0!!!! I'm on a low dose of elavil (prescribed yrs. ago for my IBS), celebrex, actonel, and wellbutrin. The wellbutrin was first given to me when I tried to quit smoking, that failed, but I found it really helped with my fatigue. So now I just take one a day for the fatigue. Also, I'm on a bunch of non-prescription supplements. I feel like a walking drugstore and I'm one who hated being on any pills!!!
Wow, I guess I was a little long-winded this a.m......... thanks for listening. Ann
Hi Ann, I doubt you're as long winded as me. LOL I don't talk to my family about how I feel because they've heard it all before. That's why these message boards are so great. The docs wanted to do both my wrists, but since it can be autoimmune, they surgery doesn't always work. My flares up and then goes away.
The Raynauds is very painful and wakes me up alot. I try to sleep with my arms crossed over my chest, it seems to help. My pinkie and nail are turning black but I haven't made an appointment yet. I don't heal well at all. I get those little round sores that peal and when they finally heal, they're purple. After 30 years, my legs, arms, and face look pretty scarey.LOL
The scleroderma hardens skin, muscle, and organs. The town I live in doesn't have the best doctors in the world. Most are involved with HMO's and the cram 10 patients in each hour so they really don't have time to do more than check your bloodpressure and temp. I have to be pushy to get what I need done. It's my body and I know when something is wrong. The doc that retired was actually a dermatologist who could just look at me and my bloodwork and know what was going on. She gave a lecture on me at one of the local hospitals trying to get input and better care for me but it didn't work. I finally went on pain meds about 4 years ago. I was tired of fighting it all the time.
Without them I would spend alot more time not moving.
I'm covered with those round purple scars left over from the lesion like things that kind of fill with fluid them peel when they dry. I had to have my teeth pulled and wait a year for partials. My gums wouldn't heal and I got a bone infection. It's always something. I've tried to fight it for years, but have been giving into it alot lately. I'm sooo tired. My family learned how to shop, do laundry, and mow the yards.LOL They know before me when I'm not doing good. They are actually better to me if I don't complain. I guess they feel bad when they hear me crashing into things or breaking dishes.LOL I'm very lucky to have my husband. He didn't want to know anything about it and I don't think he's ever read much, but I do know the surgeon gave him an earfull my last hospital stay. I don't like people doing things for me and that's been kind of a problem. Most of my medical support comes from my pain mgmt docs. They are so wonderful to me. If I need something now, they don't wait for approval, they just write it off if the insurance won't pay. I want to go back to work and went for an interview today, but don't think I'll get it. I'm on ssdi, but my copays for visits and prescriptions run about 400-600 a month. If I could work a few hours a day at least maybe I could buy something other than pajamas to wear.LOL The hardest part is accepting that this is how it's going to be. There are times I feel better but they're getting farther apart. My next life ought to be pretty darn good.LOL Anyway, I've rambled on again, sorry. Hope you're having a good day. Oh, theres a book at the library they update each year; it's not the PDR. It's for doctors and it's a huge blue book. A book of disease I think, but very informative. Probably more than you want to know. I'll try to remember the name. Talk to you soon. Sandy B
Sorry it's taken so long, but I haven't been to the boards lately. I ended up looking at and answering 2 other posts before I found your reply tonight. I'm kind of out of energy now, and a quick reply just wouldn't be enough. I'll try to get back to you soon............
PLEASE take care, Ann
p.s. If you have any extra time, there was a person who used to post a lot on this board about a year ago...... Jeri. Look for her back then or do a search for her and read some of the stuff she wrote. She was really good with words and helped me alot.
You mentioned, "The Raynauds is very painful and wakes me up alot. I try to sleep with my arms crossed over my chest, it seems to help." I don't understand why the Raynauds wakes you up? Did you mean the carpal tunnel? Before I had the CT surgery, they made some custom braces for me and I used to wear them on & off at night. It helped alot and kept me from waking up all the time. Then, the CT became so painful during the day too, so I decided to have the surgery. Since I won't have the other surgery, I'm back to using the brace on the other hand. I believe it's worth having them made & I'd reccomend it. (The ones from the ___Mart stores aren't good enough)
Do you know what those 'lesion like things that fill with fluid, drain, andpeel' are from (which disease)?? They sound similar to what I get on my face....nowhere else that I've noticed though. (knock on wood!!!)
I really think you ought to hurry on in to the Dr. about the finger turning black......... even if it's just a GP!!!!
Re: the job hunting.............. Do you have some kind of State employment office? They will often help find jobs for the handicapped (which we are) and/or refer you to a program that matches up the job so it fits with the health problem. Sometimes there are programs that help subsidize the employer to hire people that have problems. It's hard to explain what I'm talking about cause every state has different agencies. Another place that might be able to give you the names of agencies that could help with the job hunting would be your county social service agency. I think that getting out to work, at least part time, not only helps financially, but can help with the depression and energy levels too.
Stay in touch. My thoughts and prayers are with you, Ann