New Scleroderma Member From Tx
Posted 28 December 2006 - 06:43 AM
I am 41 and live in Shamrock, Tx. I was diagnosed with Scleroderma a few months ago. I was first diagnosed with Raynaud's Disease 1 1/2 years ago. I was told it was one of the worst cases ever seen. My fingers were purple and I had digital ulcers on 6 fingers. I almost lost one finger .
At that time, I was on my husband's insurance so that was cool....but then we divorced and I no longer could afford any follow-up visits so my rheumatologist kept refilling my prescriptions (Trental and Procardia). I knew something else was going on with my body. My skin started getting tight over my entire body - real shiny. My hands and feet were so swollen - it was unbearable. I finally had to quit my front desk job (hotel) in September. I had applied with Texas Rehab and they gave me the biggest run around for about 6 months saying that couldn't find a rheumatologist to work with them.
Finally, my parents stepped in and helped me so I could see a rheumatologist. But that wasn't an easy thing either. I couldn't believe how hard it was to find a 'self-paying' specialist. We actually had to drive to Lubbock which is almost 4 hours from here. The rheumatologist said I have Progressive Scleroderma, Pulminary Fibrosis and Raynaud's Phenomenom. He told me to file for disability. I did but I was told they are 4 months behind. The doctor said I should think about some clinical trials. I am so scared!!!
I have a followup visit with a rheumatologist on Jan. 9th. My original rheumatologist referred me to another one in Amarillo which is a little closer.
My boyfriend is helping me some but he had a heart attack the day that I quit my job. I am just so thankful he is alive and is on the road to recovery.
I am currently taking Trental, Norvasc, Prednisone and Fludrocortisone (for my low blood pressure). I also take a pain medication.
The last month or so I have really been having bad gas/indigestion.....EVERY day. It is horrible!! I feel like something is going on badly inside of me. I have tried Prilosec OTC and Aciphex and they don't seem to help. I have also tried over-the-counter antiacids and they don't seem to help either. Does anyone have this problem? If so, what works for you? Oh, and I get constipated alot too.
Then to top it off, I was having these massive hot flashes and thought it might have been some of my medications. Well, went to the doctor and had a test run to find out I am going through menopause. I feel like my life revolves around pills. I guess it would be ok if I felt they WORKED!! I am in so much pain from day to day. My muscles, and joints ache and my hands are still swollen. It's like the med's aren't working again. It seemed like the first 3 to 4 weeks they worked but now I'm back at square 1. When I stand on my feet for any length of time they start tingling like pins and needles sticking me.
I don't want to sound like I am whining about all these symptoms - I just wonder if they are similar to what any of ya'll might have?
I better stop for now.......I could go on and on.
I just feel all alone and I personally don't know anyone that knows about this disease. I hope to hear from ya'll. I am so lucky to have found ya'll!!!
Oh, and I got a Paraffin Bath Set for holiday. Has anyone tried it? I haven't tried it yet.....
Thanks for listening.
Big hugs to all,
Posted 28 December 2006 - 05:02 PM
You are not alone!!!! I am having some of the same symptoms that you are having. I get the bad indigestion, the foot pain, the joint pain, skin itching and on and on. I have a fabulous rheumatologist here and am grateful to her and the other wonderful doctors I have. The only thing we disagree on is me not taking the meds they want me to take. I have had so much trouble with the pain I am beginning to rethink that decision. My days can be awful enough that I have to use either my cane or walker. I have to have help taking a shower and getting dressed. But my good days are good.
I am glad you came here, so far everyone has been awfully nice and welcomed me with open arms. There is lots of information to be seen here. I have read a lot of stuff. People here are great. They have lots of tips on dealing with all of the same problems we are having.
Take care and maybe we can visit again sometime.
Posted 28 December 2006 - 05:18 PM
Welcome to the forum! I'm so sorry that you are here due to your diagnosis of sclero and many of the wonderful symptoms associated with it. Yes - Darling - your story does sound very familiar to many of us. I'm so glad that you have found doctors that really seem to be working on your behalf. I would highly recommend that you see a sclero specialist.
Please never think that you are whining. This forum is here for you to unload to people that understand what you are going through and who are experiencing many of the same problems, both physically and emotionally. We're here for you Darling and hope that you visit us often.
Big, big hugs,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 28 December 2006 - 05:45 PM
Welcome to our Sclero group. We look forward to learning or helping others out whenever we can. We try to give support and moral to those whose spirits are a bit down. I am from Michigan though I am leaving next week for a couple months in Florida. I really need the warmer weather. You will love your parafin foot and hand spa. They are wonderful. I keep mine on the lowest setting and turn it up on the day I plan on using it. I usually only keep it liquid during the winter months. During the summer you can just turn it on in the mornings of the days you wish to use it, and it should be ready by evening. There may be better and faster types than the one I have. Mine is about 10 years old. Enjoy! Sheryl
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 29 December 2006 - 01:43 AM
I am glad you have found us but sorry it is because you have been diagnosed with scleroderma. Yes, everything can feel very scary and overwhelming. Just remember that this disease does not effect any two people the same and no one can predict what it will or won't do in you. Try to stay positive and not worry as stress can exacerbate the disease.
I see Janey gave you a couple of great links and ideas for finding a rheumatologist who specializes in scleroderma. I hope you are able to follow-up as many seem to be finding some relief with some of the newer drugs.
Posted 29 December 2006 - 05:28 AM
I am sorry about your diagnosis. Your symptoms are all very familiar to us. I was diagnosed earlier this year with diffuse scleroderma as well, and have experienced and continue to experience many of the symptoms you do. Though I have Raynauds, I thankfully live in FLorida, so it is really one of the least of my problems. However, your doctor apparently recommended that you consider some clinical trials. I would also recommend that you do that. I am currently involved in the SCOT study which is a multi-institutional study. I am sure there is a facility that is likely close to you in which you could be screened. These clinical trials offer stem cell transplants and cytoxan as treatment options. They are blind studies so you never know what arm you will be put in, if accepted into the study. I am due to have a stem cell transplant early 2007 at Duke, which is part of the SCOT study. There is also a study being done at Northwestern, with very highly regarded physicians involved. Janey has previously provided a link to all of these studies. Maybe she can provide one to you, as well. Unfortunately, I am not adept enough at this computer thing to do it myself. Best of luck to you in your journey and if I can be of any help don't hesitate to e-mail me. I would be happy to share whatever insight and information I can give. Best of luck to you and I hope the new year brings on improved health for you.
Posted 29 December 2006 - 06:28 AM
Here is the link Dave is talking about in which Janey provides information and links to the various clinical trials using stem cell transplants. I hope you find this helpful.
Posted 29 December 2006 - 06:52 AM
I'm from Texas, too. I have had many of the same symptoms as you, but they are now under good control. My doctor is in Fort Worth and she is in consultation with a Houston specialist in Scleroderma. She is wonderful!
Everyone on this board had good advice. I think the most important thing you can do is to find a good doctor who knows about Scleroderma. I am sorry you are having such a rough time right now, but don't give up!
Mary in Texas
Posted 29 December 2006 - 10:17 AM
I'm sure sorry you are having to deal with so much and so fast.
How sweet and compassionate for your family to help you out. Start the disability right away as it can take a long time. I'm in the process myself of gathering information in order to file.
Please know that we are all here for you so never feel like you are whinning! We have all our days believe me.
Posted 31 December 2006 - 02:48 AM
Thank you for the warm welcome. I can tell this is a very warm, loving group of people and I feel lucky to have found ya'll.
You take care,
Posted 31 December 2006 - 03:05 AM
Thank you for the warm welcome and the links you provided. I have read alot but there seems to be soooo much to learn. I'm especially grateful to have found this forum because it helps to hear other's stories that I can relate to.
I'm really anxious to see how my follow-up visit goes with this new rheumatologist I was referred to. Hopefully one day I will be able to see a Sclero-specialist.
When I am financially able - I would love to get the Scleroderma Book. I don't normally read books - but this would be one I would be interested in - anything to help me learn more about my disease. Plus, it seems I have so much time on my hands now that I'm not working. I hope that one day I will be able to go back to work - part time if anything. I have worked my entire life and I sorta feel 'helpless' at this point. And it is so hard knowing that I don't have any money!!
I hope you are doing ok....
Posted 31 December 2006 - 03:20 AM
Thank you for the welcome. I hope you have a nice time in Florida!! That sounds like the place to be right now. It sure has been raining alot here but thankfully we missed the big snow.
I realize the cold weather is pretty tough on me......but for some reason, it seems the hot weather makes my hands really swell and burn. The cold weather makes them turn blue - but at least they don't seem to swell when they are blue.
I tried my Paraffin hand treatment yesterday.........awwww it was so nice. I was afraid it would hurt - but it was very enjoyable.
Posted 31 December 2006 - 03:35 AM
Thank you so much for helping me get on this forum. I am so glad I found ya'll. This is exactly what I need. It's nice to hear from people that KNOW what you are going through. It seems my boyfriend gets tired of listening about my aches and pains all the time.
Thanks for being there,
Posted 31 December 2006 - 03:45 AM
I just posted a new topic about men with Scleroderma......I didn't realize you had emailed me. Sorry about that. I still don't understand why women are more apt to get this disease than men - it doesn't make sense. But then again, I don't understand why "I" got this disease. I guess I should feel lucky that at least I was able to get a diagnosis fairly early on. Hopefully soon, I will find something that 'works' to help ease my symptoms.
I wish you the best of luck with your stem cell transplant. I need to read up more on that subject. All of this is still so new to me.
Have a Happy New Year!
Posted 31 December 2006 - 04:21 AM
It's nice to hear from you and especially good to hear that you have your symptoms under control!! Thank you for the encouraging words!
I look forward to the day I can get this disease under control and hopefully start working again!!
Have a Happy New Year,
Posted 31 December 2006 - 04:34 AM
Thank you for the welcome. It feels good to be here.
I couldn't believe how much information is required to file for disability. It took me several days to get it all together. The funny thing is - I happened to run across a list of every single job I have had since highschool. So the part where they wanted the jobs you've had for the past 15 years was a breeze
I actually had a phone interview and I remember being so nervous before the call. But it really wasn't bad at all - plus I had a really nice lady conducting the interview. I think the most time consuming part was the packet (daily activity questionnaire and work history report) they send AFTER the interview.
Anyway, I wish you luck.