NEW to this...needing some support

I was recently diagnosed with CREST or limited scleroderma after a battery of tests. So far the Raynaud's and the joint pains have given me the most issues. I am a 36 year old mom of 2 and the unknowns in this condition give me a lot of anxiety. I am still in the "wait and see" part where my rheumy will decide if it will be more of a chronic or acute issue.

I gave up gluten among other things and the joint pain has gone from about a 9/10 to a 2/10. Some days its not even there. Exercise has helped which is also a catch 22 if you can muster the energy to do it! Lost 30 pounds in the process. I am still trying to figure out how to get my circulation improved to heal an ulcer on my fingertip.

Has anyone out there been able to manage this successfully for years? I worry about losing the ability to use my hands and being able to work and provide for my family and not becoming a burden to them. I dont know anyone with this and most people around me just dont understand. Thanks

Report post

15 replies. Join the discussion

Welcome, you have come to the right place for support and great information. I have had sclero for over 20 years. I exercise every day and see a chiropractor once a week. My health has actually improved over the last few years and I have learned to accept the limitatons of my body and my new normal. Get lots of rest and continue to exercise and be good to yourself...Kymmie

Report post

Lastenia,

I'm sorry about your new diagnosis but I think the short answer is that you can live with this for a long time with adjustments. And yes you need support. I've been diagnosed since 2001 and I'm doing OK. I've had lung involvement so I'm on disability but I work 3 hours a day at a grade school. My life is different now but still meaningful. I too gave up gluten and I've already seen good changes. I've also given up processed foods, sugar and a lot of meats. I find yoga helps with my joint pain and I try to reduce stress as much as possible.

You might read this about Raynauds from the Mayo Clinic. It's a good starting point. I'm glad you've posted and I look forward to getting to know you better.

http://www.mayoclinic.com/health/raynauds-disease/DS00433

jen

Report post

Hi Lastenia, I have Diffuse Sleroderma, with severe Raynaulds..I too get ulcers on my fingertips. I have one right now on my right middle finger. I have had this ulcer for 3 months now, man they hurt. I have been putting 'Manuka Honey' on the ulcer with a bandaid. the Manuka honey I find is healing the ulcer faster then putting bactorban on it..I went to a wound clinic and they told me to put iodine on it..This does work but it dries out the ulcer too much, the more dry the ulcer the more pain i find... I did find that putting iodine on my skin when it firsts cracks helps to prevent the ulcer...But the crack is so hard to heal...The honey provides a moist feeling but it dries it out too..I did tell my Rheamy about the honey and did lots of research on it, he said if it works great! You should look in to it.....I also, have just started to use an Infared sauna, I have found this to help speed up my circulation, and help to heal the ulcer...Its also making my skin softer. I do stretching in the sauna along with mouth exercizing, makes me feel so good:) Hope this helps you, take care

Report post

When I was first diagnosed I went on the internet and read all the scarry stuff about the disease. I was so frightened! It was made worse because my son was only ten years old at the time and my worries for his future were overwhelming. My friends and family just didn't understand which made me feel isolated.

What helped me most (and still does) was being able to communicate with others who also have the disease because they DO understand. I am glad that you found your way to this site. The people here have given me so much good information and kind support and I am sure that they will do the same for you. Talking about your concerns will go a long way towards making you feel better and will help with the anxieties.

Educate yourself about the disease. Improving the circulation to your hands is good but you must also keep warm. There are many medications that can help as well. Exercise as much as you can without overdoing it and on the days that your energy is low, take it easy and let your body rest. Finding the balance between doing too much and not enough is something all of us work with.

It is important to find a rheumatologist that specializes in the disease if you can. The medical community has a lot of catching up to do in its knowledge and understanding of the disease. From my experience and from what I have read here, a doctor who specializes in Scleroderma is better.

I can't predict how the disease will progress for you as it is different for everyone. For me, the progression has been slow and l lead a relatively normal life, although there are some frustrating times. To the best of my knowledge I have been displaying symptoms for fourteen years but I was officially diagnosed eight years ago. (My son, by the way, will graduate from high school this spring.) I expect that I will be around for a while to enjoy watching his life unfold.

I hope you feel a little better about this soon. It is a lot to take in. May you be blessed.

G

Report post

I too am new and awaiting the final alphabet soup of names they will add on to the sclero. As each day comes and goes, so does a new symptom - it is scary as hell to know something is seriously wrong but not know what it is. Its even scarier to try and educate yourself and find that there is so much involved that it becomes overwhelming trying to soak it all in. You are not alone - if anything, far from it!! No one around you will understand and there will be some who cant handle the truth and try to pretend that nothing is wrong. If there is one thing I know right now this early in my diagnosis, its that you have to surround yourself with ppl who DO understand, even if it is on the internet. A kind word or an "ive been there and ive done that and have you tried this" comment will go so far in keeping your moral above water. Hang in there!!

Report post

I started with my first signs of this illness about 25 yrs ago. It didn't affect me too badly until the last few years. I have 5 kids and although this illness slows me down now I'm still able to live life and enjoy my great family. I don't talk to most of my family and friends about any of this because they don't want to hear it-don't think it's that bad. I come here for all my support and have learned so much from my inspire friends!!!

Report post

I think being with friends and laughing are the best! I hated time alone when I first was diagnosed. I felt like thinking made me so sad. I hated being alone with my thoughts. Here I was with a 6 month old baby and a five year old and a lot of insecurity about my future to be there with them.

I think avoiding that kind of thinking was better than doing it. Better to talk it out with friends, laugh with friends about daily fun life stuff, enjoy the kids so you don't waist this special time with them. I don't have severe problems still with scleroderma, but each time something little and new pops up I have to try hard not to think about how things could be getting worse. I just hate anxiety about the future.

I think the scleroderma does affect the way I approach my kids. I always try to give them my best kindness, advice, and love. I do have feelings that I need to do my best for them every day in building their character. Taking them exploring really makes them happy and me happy. I want to show them beauty and be there with them to see it. I hope I can always do that with them. Sometimes I jump into fears of losing abilities, but not as much as when I first was diagnosed. I just feel rotten when I go down that road so I try to stay in the here and now and enjoy life.

My sister said that I need to think of life as being on the airplane. She says I need to put my oxygen mask on first so I will be there to put on my kids' oxygen masks. So exercising, resting, keeping warm and caring for yourself is putting your oxygen mask.

One time I was in a freak hail storm while hiking with the kids. It went from sunny to rainy and hailing in a few minutes. I fumbled to get the kids under a little tree and get their warm clothes on as the temperature dropped 20 degrees. My sister hiked up to me and was so angry that I didn't have my coat on and both my hands were white.

So take care of yourself first and invision being here healthy and strong. Shock and sadness over finding out you have scleroderma is just natural, but don't let it take you over.

When I first got scleroderma, my sister flew all over the country and met with the experts, fundraisers, and researchers. She also met with people who had scleroderma. She asked them, what she could do and what I could do to make things better. They told her I should stay warm, rest, and get a maid. She does research for me and goes to every doctor visit with me.

One of my girlfriends calls me everyday and asks how my finger is. We end up laughing and then she always says, "Stop laughing, this is serious!" I tell her I know, that's why I am laughing. Sure I am on a gazillion antibiotics, have seen several inept and one terrific doctor and am trapped in crumby insurance, but it feels good to laugh with a girlfriend.

About your finger, my doctor put me on low blood pressure medication to increase blood flow to my finger. It had an ulcer and then an infection. I think the infection is still there. He said the finger needs blood flow in order to heal.

One more thing that makes me feel good is when my sister and I brainstorm ways to fund research and more scleroderma clinics. I know we can do it!

Report post

Wow! You are so lucky to have someone so involved and supportive! I would love to have an individual like that! Most days I try not to think about it and go on but lately for some unknown reason it has been harder to do. thank you for your response.

Report post

Thank you all for the encouragement, its good to hear from you all. I needed that.

Report post

Hi Lastenia, I think you found the right place for support!!! Like you (and many others) I went and read everything I could find, when I was first diagnosed, and FREAKED OUT for a minute. I quickly learned not to let information overload send me over the edge. I found a wonderful rheumatologist, who really seems to care about my health. I was first diagnosed in 2000 (by a rheumy who just gave me a lame pamphlet and sent me out the door!--obviously not the rheumy I have now!). After a few years of dealing with the Raynaud's, I started getting painful ulcers on my fingertips...one of which went gangrenous and had to be removed. Lesson from that was to be sure and take good care of my fingers! The doctor gave me nitro ointment to help with the circulation, and it worked, but it gave me really bad headaches--especially if I used too much. I still get fingertip ulcers, but I make sure to keep an eagle eye on them and not let them get infected. I also started having severe acid reflux (GERD) and that has never really dissipated--I still have big problems with that, but Nexium has really kept it in check--as long as I can afford to get it. In 2005 or 2006, I was diagnosed with interstitial lung disease (pulmonary fibrosis) and it has gradually gotten to the point where I had to stop working (recently) and am now on disability. My rheumy had me try Cytoxan therapy for 8 months, for the lung disease, but it made no difference. I also have arthritis in pretty much every bone in my body, but Prednisone and Methotrexate help. I do have a lot of difficulty doing things with my hands and can't exercise--other than a few minor chores around the house. As for the people around me who didn't understand...I was happy to give them a little info card (which I got from slceroderma.org) and they started to see the light. My sister freaked out, because she did what I did and read everything she could find on the net. As you can see, by reading all of the responses, everyone's sclero story seems so different...there are similarities, but everyone's severity and progression is truly unique. Don't give up hope....your story is just beginning. Take care.

Report post

Hi I am a mom of three and I was dx Jan. 2010 but had the disease for at least a year before.I have no organ invovlment just some skin changes and hand problems, and raynouds. My fingers are slightly curled but I still cut hair a few hours a week and now looking to go back to school to be a pharmacy assistant and work in a hospital. always wanted to work in a hospital but not a nurse or behind a desk so my son started to work in a pharmacy and I thought that would be a good thing for me. I sometimes cry at night lately more so. Just scared for the future but people seem to live long lives with this illness, there are worse out there.I know how you feel. I look at my kids and hope to god i will be here to see my 10 year old daughter walk down the isle. I am 48 and still call my mom everyday. I know she will need me and I will fight like hell to be hear. I need to change my diet. I give you credit for going gluten free I have to try it. My joints are killing me. I want to start walking again.otherwise I an healthy, 4 years in and no organ changes they say after 5 years thing start to settle down I hope so I have diffused sclero. stay strong and stay on this site it is amazing!

Report post

I was diagnosed 16 years ago, the first 3 were the hardest, just wrapping my head around the concept of having an autoimmune disease was quite difficult, but also the first few years my symptoms came on like gangbusters. After that period it became fairly manageable, with difficult patches here and there, not too much unlike a 'normal' persons life. For the past few years I have been doing quite well. I still have symptoms, but not severe. Over the course of this disease I have started things that I probably wouldn't have otherwise such as very healthy diet, exercise regime, meditation. I hate to say it but I am probably a better person for having gone through it. Take heart.

Report post

I too take blood preside medication for my Raynauds He just recently increased it because my hands started turning almost black again. I've just started going to a Rhumatologist that specializes in Scleroderma. I think this is very important. Pay attention to your body, it will tell you a lot. I pray more, laugh often and cry a lot, but I haven't let this thing stop me from living. It just slows me down!

Report post

Lastina,
I was diagnosed with progressive systemic scleroderma 32 years ago, and like you read up on it and freaked out. Then I found great doctors from my pc to my rheumatologist and was able to get accurate answers and help. I was also lucky enough to meet a number of people with scleroderma and we would compare notes and research together. Although I have had to make some adjustments over the years I function as normally as anyone without the disease, and in some cases even better. The adjustments that used to scare me are now nothing more than a challange that I love overcoming. When I was diagnosed my children were 4, 7, and 8 years old so I do understand your concern. Good news is you CAN do it! End result is My daughter is an attorney(went through undergraduate and law school on full scholership) and both of my sons are gainfully employed in the buisiness that I helped my husband create (with scleroderma). I now have 6 grandchildren and another on the way due in Feb.
The best thing you ever did was to find this support network. With that support you will be able to do whatever you set your mind to. You have scleroderma it DOES NOT HAVE YOU.

May the angels be with you,
Jackie

Report post

Hi this is my second year living with scleroderma. Am a Nigerian and in my country the condition is relatively unknown. What i know about scleroderma is from the internet and my dermatologist who is well versed in her field. For digital ulcer which i experienced recently on my elbows i use African shea butter in its raw unprocessed form it helps i also rub it allowed my body with good results. I also use Aveeno and Eucerin moisturizer i walk everyday and do a great deal of house chores so i can keep my joints exercised. This is a crazy situation and i know we all can win this and live a better life. Am happy to find people who are like me and understand my situation. Am a journalist.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Scleroderma Foundation

Help the Scleroderma Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Scleroderma Foundation

Discussion topics

From the Scleroderma Foundation

Community leaders