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Advice and finding a doctor. New to this. Need help and advice!

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#1 debi5916



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Posted 04 March 2009 - 01:04 PM

I'm new. I was diagnosed with scleroderma one month ago by a rheumatologist on a one time visit.

I have SEVERE fatique, pain and swelling in joints, mainly hands and legs/hips. Basically I spend all days in bed. I can't even take care of myself. Blood tests were negative(ANA, R.A. lupus etc.). Visual diagnosis was made from skin tightening on hands, tiny broken blood vessels on hands and history of symptoms.

I had emergency surgery for bowel obstruction 9 months ago due to scar tissue and thickened bowel loops. Possible Crohn's also. Diagnosed with tendonitis in shoulders by MRI. Testing showed lots of inflammation. My question is this: I have been seeing a pain management doctor and he told me today that he wasn't that familiar with scleroderma but he said it does not cause pain unless you have ulcers on your fingers. Can anyone help me with this advice? Is this true? I cannot find a doctor that knows anything it seems. I am at my wits end trying to find help!

I had no insurance or medicaid. I had a medical card for 2 months and then was denied; that was before the diagnoses of scleroderma from the doctor but I don't have it in black and white. The doctor just told me over the phone. I am in the state of Illinois. Does anyone have any info on finding a site to find doctors in Illinois or Indiana that are familiar with sclero?

Also does anyone have pain without the ulcers on digits? Right now I am on some medications and it does help some but not enough and now doctor says that I shouldn't be in that much pain because I don't have the 'ulcers'. PLEASE help if you can!

#2 Shelley Ensz

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Posted 04 March 2009 - 01:32 PM

Hi Debi,

Welcome to Sclero Forums! I'm glad you found us, but sorry that it is due to scleroderma. We have a listing of Scleroderma Experts. They would also be excellent in helping to determine the cause of your pain and the appropriate remedies.

Please keep in mind I have no medical training at all and that I may be wrong (I often am!). As I understand it, scleroderma is a form of arthritis, so certainly, it has the potential to cause a lot of pain, which is often managed with the usual arthritis medications, along with self-care techniques such as relaxation, re-labeling, distraction (hobbies, music), prescribed gradual exercise, warm pool classes, heating pads, and so forth. While you are waiting for further medical advice, perhaps you can explore ideas on how to reduce the pain level naturally. Perhaps try one new item every day, see how much it helps you? And let us know what things you find most helpful for inducing relaxation and lessening the pain level a bit?
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#3 janey


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Posted 04 March 2009 - 01:57 PM

Welcome to the forums Darlin'! I am so sorry to read that you are in so much pain! I know that their are several members of this forum that suffer with pain from scleroderma as well as overlapping diseases. I had severe knee pain for a year prior to diagnosis, then it went away. Sometimes at night I get pain from my hip to below the knees, but it goes away when I get up an walk around. It's weird and my rheumatologist can't explain. We do have a page on Pain management and Scleroderma that you might want to take a look at. There are some natural things you can do help.

I saw that Shelley provided a link to Scleroderma experts. You should be able to find some doctors in your area from a link to the American College of Rheumatology that you'll find on that page.

I hope you find a doctor with some experience with scleroderma. That is so very important. This disease is different for everyone, so there are no textbook answers. We've all taught our doctor's a thing or two.

Please keep us informed on how you are doing and PLEASE - if you have any questions - ask away. We're here for you Darlin'.

Big Hugs,
Janey Willis
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#4 Amanda Thorpe

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Posted 04 March 2009 - 02:00 PM

Hello Debi

Usually I would begin by welcoming you to the forum but it is more important for me to say - your pain doctor is living in la la land if he thinks ulcer pain is all sclero causes. Do please tell him, as he admits to knowing nothing about sclero, to NOT comment on whether or not it causes pain! :angry: Suggest instead that he aquaints himself with this forum and educates himself in respect of scleroderma, then he can make educated informed comments, something he is yet to do.

Welcome to the forum, this is a great place to get help and advice and we're glad you've joined.

Chronic pain is a sclero symptom regardless of what type of sclero you have, diffuse or limited etc. Scleroderma can effect the skin, muscles, joints, connective tissue, gastrointestinal tract, bowels and internal organs. I'm not Einstein but even I can figure out there's an "ouch" in there somewhere! The good news is that there are meds to help manage the pain.

There is a list of sclero experts on this site so you can find one near you because you need to see a rheumatologist who is a sclero expert. Your pain management guy is a classic example of how detrimental it can be to deal with uneducated doctors. You need a doctor who knows how to help you because you can get help with pain relief and disease progression.

Fatigue is another familiar symptom that we struggle with and some here take meds to help alleviate some of it, so again help is there you just need someone who knows what they're doing and it don't sound like you've got that so far!

See if you can access a sclero expert near you so that you can get a care plan in place to treat the disease (incurable but treatable) and help manage the symptoms. The good news is that the phase you're in can pass, it can get better.

I also have negative ANA, it don't mean diddley! :lol:

Take care.

Amanda Thorpe
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#5 Jeannie McClelland

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Posted 04 March 2009 - 02:28 PM

Hi Debi,

Welcome to the Forum! It's alway a good/bad thing - good that you've found us and bad that you needed to. We're a great source (OK, I might be a little biased) for support, friendship, and information. Did I mention understanding? We really know what you are going through!

Pain and fatigue are common topics on the Forum. See the 'Search Forum' up on the purple bar? It's at the right hand end. If you click on that, a search form will come up and all you need to do is type in a keyword in the white box in the upper left corner, scroll down to the bottom and hit (gently please, we aim not to harm any computers!) the 'Perform the search' gray box/button on the lower left corner. Try it with the keywords 'pain' or 'fatigue' and I bet you'll get lots of returns.

I take medications for both pain and fatigue and my rheumatologist says they are related to scleroderma. (Imagine me with my hands on my hips, chin in the air, saying "So, there!")

We have a page on Disability Resources that might provide information to help you with any problems caused by being without medical insurance. I'd recommend wading through as much of it as you can because you never know what/who might help.

Best wishes and a warm hug,
Jeannie McClelland
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#6 Snowbird


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Posted 04 March 2009 - 02:47 PM

Hi Debi

I just wanted to say welcome too! It's very important that you find a doctor that knows about this disease and that you can converse with so you understand it as well. This is a great site with loads of people that can help you. Ask as many questions as you like, you'll always find someone here who understands. A bit of advice is not to read everything on the internet, been there, done that, no intention of going back. You'll find factual information here.
Sending good wishes your way!

#7 Peggy


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Posted 05 March 2009 - 07:22 AM

I just need to chime in and say that that guy is full of baloney! I have systemic sclero with sjogren's, raynaud's, polymyositis, and peripheral neuropathy. I have terrible pain in my muscles in my legs, arms, hips and now back and shoulders too. I have had numerous emg's and have muscle damage. Now whether this is from the sclero or the poly or the neuropathy I don't know and I don't care. I just know it's there and I live with it every single day. I have to wear a pain patch that administers pain meds 24 hours a day constantly, and I also in addition to that I also take oral pain meds. I was just in for my quarterly apt and my rheumatologist is trying everything he can to try and get a handle on this but he just doesn't have alot at his disposal. I have done the IVIG and this did bring my cpk muscle enzymes number down but it didn't take the pain away.

What I have found through this whole process of finally getting the proper diagnosis is that you have to constantly deal with medical professionals who know about Scleroderma. If they don't you shouldn't waste their time or yours and keep looking for ones that know about it.

This forum is a great place to go to vent, get support, give support, and to learn. I have gained so much knowledge from the people here that has helped me immensely.

Please keep letting us know how you are doing.

Warm hugs,


#8 razz


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Posted 05 March 2009 - 08:31 AM


Welcome to our forum! Now that you've been officially diagnosed with scleroderma you've come to the right place for answers to your questions. Everyone here is very helpful. First I would suggest you find a qualified rheumatologist who specializes in scleroderma. Depending where you live in Illinois, you should be able to find one close to your home. If you still have any questions after checking our Scleroderma Experts listing, I would be glad to give you a few recommendations since I also live in Illinois.

Your pain management doctor does not know a thing about scleroderma if he thinks digital ulcers are the only pain causing symptom in scleroderma. Yes, digital ulcers are painful but so is the arthritic and muscular pain, not to mention other autoimmune-related symptoms. In answer to your question whether anyone has experienced pain without the ulcers, I can say yes absolutely. I was in pain for many months before I developed any finger ulcers.

I hope you find a good experienced scleroderma specialist right away!

Glad you found us!

Live well, Laugh often, Love much

#9 debonair susie

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Posted 05 March 2009 - 12:06 PM


You have everyone here, who will stand with as you weave your way through the maze.

The dr was really talking out of school...telling you what he did. I am just so very relieved that you found your way here, where I believe it will at least calm your nerves. There are those of us who have experienced what you now are and know very well that how you are feeling physically is not a figment of your imagination!

You have received wonderful links and very helpful suggestions and I have nothing I would even be able to add!

I just wanted to welcome you to our very large community...it's a family, really, as we are here to support and when we are able, offer up our own experiences.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)