I Am New To This
Posted 19 January 2008 - 06:16 PM
I was just diagnosed in September with Limited Scleroderma. It seems to be progressing quickly. One of my hands is really giving me problems with swelling, pain, discoloration.
I am 45rs old and have always been very active. I am having a hard time dealing with this. I miss being full of energy and I am not used to the pain. How do I cope with this? I have family support but they don't fully understand what I am going through. Is this going to get worse? I know I sound stupid but I am scared...
Posted 19 January 2008 - 08:46 PM
I'm glad you found this forum and I am sorry that you are going thru tough times right now.
It's not stupid to be afraid. We have all being there. Like you, I was very active and it has taken me a little time to understand that there are thing I just cannot do anymore.
This condition is different for everybody, so it's hard to tell you if it will progress fast or if it will just be a pain in the neck for years to come. The best thing you can do is not worry too much about this. Many, many people live very good lives with the condition.
I was diagnosed with systemic scleroderma three years ago. I'm 4 years now, and I thought my life was over. I even needed time to mourn myself before I decided that this was not going to bother me anymore. The more you stress, the harder it is going to be for you.
Take it easy, and everytime you have a question, just ask. People here are very good about answering or directing you to the righ sites to find answers.
Also, make sure you have a very good doctor.
Take care of yourself and keep us posted.
Posted 19 January 2008 - 10:55 PM
No one knows the trail of progression this disease takes in speed and diameter. It's a day to day situation which you cannot allow to totally interrupt your life.
Hook up with knowledgeable doctors, rhuemys and if need be psychologists.
Yes, there are bad times; I'm been going through a lulu the past several months, but I know there will be a light at the end of the tunnel. We all go through these rough spots throughout this illness, but the majority of us overcome and move on.
This is an excellent website you hooked onto. The information provided here is to be informative, not frightening. The people here are you and me. We are all in this together and love nothing more than to share our experiences, advice, happiness, laughs and everyday lives.
It's okay to be afraid, but we are here to allay and help you through your fears.
It is what it is...........
Posted 19 January 2008 - 11:11 PM
You're not sounding stupid at all. We all have been there before, and at the times we are all still trying to get used to this. You can just try to relax right now. Only time will tell how fast the disease will progress and how it will limit your life. All I can say is that there's no cure, but there are ways to deal with the symptoms.
Anyway, I'm glad you found us here. You'll find a lot of people here that can give you advice and understand totally what you mean.
Posted 20 January 2008 - 12:03 AM
Hi, fancyface and welcome to the ISN Sclero Forums. As you can see from the responses you have received already, this is a friendly and supportive group. Truman nailed it with excellent advice and especially the comment, "The people here are you and me."
I include a link to the page on Limited Scleroderma from our medical portion of the site. It should help answer some of your questions. (The links to all of the various Sclero.org pages can be found at the top of the column on the right side of the page.)
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International Scleroderma Network (ISN)
Posted 20 January 2008 - 12:50 AM
My dear it's so natural to be scared. We are were and frankly still are at times. It takes time but its okay to be sad, scared and cry. I was scared today. My husband says something would be wrong if I wasn't. I told him I guess that in someway makes me normal, which makes me smile.
You might want to see a doctor about different pain medications or even a pain clinic. If you're looking for support you might seek out a local support group or even get a book and share it. Remember your friends and family need time to adjust and learn as much as you do.
Like Tru says no one knows the rate of progression, but you can get a better idea and maybe even try to stabilize yourself if you get under the treatment of good doctors. I've met a few newbies who aren't excited about taking meds and sometimes we have to take quite a few of them, however it can provide a better quality of life. I know when I've been late on my meds I feel so weird, so abnormal and almost like I'm floating.
The most important thing is to learn, research and ask questions. I also recommend maintaining a library of your record and tests you go thru. I have a horrible memory, so I also keep a typed journal of all my doctor appts, symptoms, etc. This way I know when I remember exactly when I had the last eye exam or whatever. It also allows me to track symptoms, so I can tell the doctor my finger's been orange since last weds.
It will get better.
This is manageable.
Big hugs, peanut
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 20 January 2008 - 08:07 AM
I have a migraine today but like you said, it is what it is and I will deal with it!
Posted 20 January 2008 - 08:54 AM
I wanted to say Hello and welcome to the forums. I am sorry that you found us due to your diagnosis. This is a great place for ideas and support.
No two people are the same when it comes to scleroderma. I would guess that you will again become more active once you find a good treatment for your symptoms. After a while you and your doctors will find treatments that work and get rid of the ones that dont.
I hope that you start to feel better soon. Do you have a good team of doctors?
Posted 20 January 2008 - 11:55 AM
I think we are all afraid sometimes, it's perfectly normal and not stupid at all. I think the worst part is not knowing what will come or when it will come or if a certain symptom will come at all, it's that fear of the unknown that snags us.......we just need to go from day to day and try not to worry about what might be (although I know that's much easier said than done, been there, done that too I'm afraid). I hope you keep us updated and let us know how your appointments go. The people on this site are wonderful, they have really helped me (I'm new to this too)...
Posted 20 January 2008 - 01:33 PM
Posted 20 January 2008 - 03:47 PM
It's natural being scared this early in your diagnosis. That feeling actually comes and goes depending on how your disease progresses or doesn't progress You'll have stormy days and sunny days, so cherish those sunny does when you get them. Are you seeing a scleroderma specialist or at the very least a rheumatologist that is well versed with scleroderma? Just make sure that the doctors that treat you are experienced with treating scleroderma. It's enough of a guessing game as it is, without having the doctors constantly guessing.
We have tons of information (general info, research studies and clinical trials info on this site. You can go to our main medical page or do a search for something specific using the search box. Of course you can always post your questions on this forum go get personal experience which is invaluable.
I'm glad that you have joined us and started posting We all wish we could tell you what to expect, but this disease is so different for everyone that it's hard to say. Please keep us informed as to how you're doing.
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International Scleroderma Network (ISN)
Posted 21 January 2008 - 01:47 AM
You sound like me. I have MCTD and with scleroderma and lupus mix. I was 45 when it hit and I thought my world was basically coming to an end. I had never experienced so much pain and weird symptoms. I scrambled to doctors that I never needed to find answers only to find it would take three to four years to figure out.
My advice, get good doctors and shop around if you need to. You need doctors who listen and respect your thoughts. Also, read and read and get all the information you can so these new symptoms don't scare you. Being here is a great start. Eat fresh food and try to stay away from processed foods. This seems to relieve my digestion problems alot.
Take good care of yourself, including rest.
I hope things turn around and get better with help from your doctors. I can tell you that my first three years were the most turbulent. I still have problems but I guess I am used to alot of things and have adapted. I exercise regularly, enjoying walking, water exercise, and kayaking in warm weather.I strectch all of my body for about 15 minutes a day. I bought a DVD for strectching. I still enjoy life but don't beat myself up when things are hurting. I give in and rest.
Hang in there. Susie54
Posted 21 January 2008 - 04:21 AM
Welcome to the sclero forums. We're are so very glad to have you here. I am so sorry to hear of your diagnosis. I know all to well, as everyone else here, how scary it can be at the beginning. I freaked out and was almost digging my own grave when I was diagnosed and that was 8 years ago and I haven't had much progression.
Take one day at a time, learn learn learn about the disease, use this site daily to help you.
We are here!