Hi Rose,

Can you explain a bit more? Have you been diagnosed with RA? Are you on any medication for RA - not pain medication?

If many joints are hurting it sounds like you may in a flare. Are you being seen by a rheumatologist?

Hi Warrior
It started last year BUT in July I was dignosed with SS (Sjorgen symdrome) and yesterday I was dignosed with scleroderma.

My rhematologist in July keep saying inflammation in joints BUT yesterday she stated not you have two need dignoses in cluding a lot others. She is trying to figure it out BUT the good thing is that she has a few patient like me who body does not take meds or reject meds. I have this wax she suggested but it is for my hands. Physical therapy is recommended BUT not referral because I have another condition that been too physical active triggers it and I cannot because I have to maintain a healthy heart

Schleraderma is a very dangerous autoimmune disease that can kill you within 5 years. My best friend has it and it almost killed her 6 months in. I would encourage you to find a board certified Rheumatologist and follow their recommendations. I understand that you don't want to take pharmaceuticals, but without them, you are seriously risking your life. No wax is going to treat this, but there is no reason you can't combine a holistic approach with modern medicine. Any damage that happens will be irreversible, so please don't wait too long. Best of luck.

Hi
My doctor told me to see her next week to start treatment and testing of my heart and lungs.

Excellent! Heart and lungs are what was attacked first in my friend. I hope they have caught this early and yours isn't as aggressive as my friends. You are in for a long road. Schleraderma is a bit different than RA, so I would encourage you to find a support group to help you with specific things you will be facing. We are certainly happy to help with what we can and discuss generalities with autoimmune diseases, we just don't know much about the drugs they use and how they effect you. My friend has lived 19 years with it. She has a pacemaker/defibrillator and has been off and on oxygen more times than I can count. She is currently waiting for a kidney transplant and is doing dialysis 3 times a week. These autoimmune diseases are awful. I'm sorry you are having to deal with it.

Hi Kim
I did a three days work up last day on my heart and I saw my cardiologist a few months ago. My rhematologist wanted to double check. My hand seems like only my right hand maybe because a cast is on my left hand. I watched a clip on schleradema website and it give tips how to help one hands.. The speaker say it slow it down. At this point only my hand i notice. I am going to be having a peer who has schleraderma. I am learning that you can have mild schleraderma to life threathen. Pray for the best

I always say fear the disease, not the meds. For many diseases, you can go natural, diet, etc, and it will help. But autoimmune diseases are NOT in that category.

Even if you are mild now, without pharmaceuticals, you could become severe. That's what happened to me with RA. I was sero-negative, (meaning my blood tests didn't show any inflammation) but my joints were massively flared. It took 4 rheumatologists and 4 years to get a diagnosis. Then I moved provinces, and the new doctor under-medicated me for 5 years. My current rheumatologist said I am the most severe case of RA he has ever seen. I need a biologic and a DMARD to control my RA, minimum.

Please take the meds, because all these lovely videos that give us exercises and hand care don't really help. I have a badly deformed left hand, even doing a whole series of daily exercises, because Cimzia does not work on my hands or feet. I am so done with it!

Thanks for the update, keep letting us know what progress you are making.

Hi
Thanks I am going to take the meds. My rhematiologist and I spoke about trying the meds and if it does not work she is going to keep trying until she find the right one. I have started to exercise that I saw online and even got a glove because my hands become cold. I also am using a former of lotion.

Thanks for saying that the exercise does not work, I do want to try, When my chirop... adjust me last week I felt good until the following day. The only small improvement I see is that I can fully bend my right hand which I was having some problem doing and I can open it (spreading fingers a bit more). I can feel the tighten still. I do ASL and need to at least try.

I didn't mean to say don't exercise. Exercise is important for everyone. I just meant it didn't stop my hand from getting ulnar drift. And basically that is one biologic I am on. It never happened on other meds!

So glad you are working with your doctor to get on some good meds, and do exercises, for sure, along with the meds.

I think I meant, if I had a choice between exercise only, or meds only, I would do meds only! But better to do both!

As for as exercise making the joint pain worse, I just learned this lately. If I exercise my whole body, I have to take 2 days off, the flares are so bad. My doctor told me this.

I've never had this problem with exercise causing flares, just this year it started. I think it is also that my RA is not under control!

Let us know how you are doing, Rose, with your treatment plan.

Thanks Marlene.

"People who have localized scleroderma may live an uninterrupted life with only minor symptom experiences and management. On the other hand, those diagnosed with an advanced and systemic version of the disease have a prognosis of anywhere from three to 15 years."

https://www.premiermedicalhv.com/divisions/services/scleroderma/

Thanks Warrior. I also read that it can change quickly. I see my specialist this week. I am trying to educate self and is willing to make changes. On their foundation I watched a video that speaks about slowing down the hands. Plus what a scleroderma hands reveals. I am planning to watch again. I start making changes to slow down. I appreciate your help. If you can please go on the scleroderma foundation it is very helpful. I also link with one in my area too