SharonH

Looking for help

9 posts in this topic

I was diagnosed July 2014. My doctor has told me that I just have the kind that effects the skin. If what I have only effects the skin, why are my joints hurting so much? I'm really confused. I live 2 hours from Houston, Texas have found doctors there that treat this and also do research and I am trying to get a referral to them, but found your site and thought I could get some feed back and get to know some of you while I wait.

 

 

:emoticons-thankyou:  :thank-you:

Sharon

Share this post


Link to post
Share on other sites

Hi Sharon,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently been diagnosed with Scleroderma and I've included a link to our medical page on Localised Scleroderma which I hope you'll find helpful and interesting. Unfortunately, this is part and parcel of Scleroderma as it affects the connective tissues of the body, causing inflammation and pain.

 

I've included our link to Scleroderma experts and I hope that you will be able to get your referral, as we do recommend that our members consult a specialist who understands the idiosyncrasies of this complex disease.

 

Now that you've joined our community, I hope that you will post often and let us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sharon,

 

I hope you get your referral to the doctors in Houston quickly as they have a great reputation. There might be another reason why your joints are aching, like arthritis, and they can help to diagnose that. We all know how confusing it all is and hope you get answers.

 

I have been fortunate in that I have not had too many aches and pains but I go for weekly massages and see a chiropractor weekly. This was a practice I started before scleroderma and continue with 10 years later. I am fortunate that both my massage therapist and my chiropractor are sensitive to my body and are very gentle with me. I really feel a difference if I miss a session. My hands were the biggest problem when my skin was very tight. I went to Occupational Therapy and had hot paraffin wax dips and they felt wonderful.

 

After about 5 years my skin began to soften and is now back to normal. I was a 45 on the Rodnan Scale and am now a 0. The skin can begin to soften  after a period of time.

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites

Hello Sharon
 
As it happens localised scleroderma can cause symptoms outside of just skin involvement, in 2003 a large multinational study found that 25% of people with localised scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up.

 

If you have morphea, it can burn itself out, even without treatment, within 3 to 5 years but of course the fact that it can doesn't mean it will. I have morphea and bullous morphea and 7 years on it's going nowhere but then I also have systemic so maybe that's keeping it going. Who knows with this disease!

 

The best thing is to be treated by a scleroderma expert so you can be sure of your diagnosis and treatment.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thank you all so much. I have ask my rheumatologist for my referral and was told my primary physician will have to make it, so am waiting on him. There is so much information on this site, Thank you all for being here.   

Share this post


Link to post
Share on other sites

Hi Sharon,

 

I'm just dropping by to say Welcome to Sclero Forums!  I'm glad you found us, and I am sure you will get some good answers at the scleroderma clinic.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hi Sharon,

 

I hope you get your referral to the doctors in Houston quickly as they have a great reputation. There might be another reason why your joints are aching, like arthritis, and they can help to diagnose that. We all know how confusing it all is and hope you get answers.

 

I have been fortunate in that I have not had too many aches and pains but I go for weekly massages and see a chiropractor weekly. This was a practice I started before scleroderma and continue with 10 years later. I am fortunate that both my massage therapist and my chiropractor are sensitive to my body and are very gentle with me. I really feel a difference if I miss a session. My hands were the biggest problem when my skin was very tight. I went to Occupational Therapy and had hot paraffin wax dips and they felt wonderful.

 

After about 5 years my skin began to soften and is now back to normal. I was a 45 on the Rodnan Scale and am now a 0. The skin can begin to soften  after a period of time.

 

miocean

 

 

 

Wow, that is great about your Rodnan score.  My skin tightening seems to be happening only on my hands so far.  I also have joint/muscle pain. I am interested in looking into massage therapy.  Do you know if its possible to have your insurance cover it?  Also, can I ask what type of medication you were on? 

Share this post


Link to post
Share on other sites

My insurance doesn't cover the massage therapy but there are some that do if the doctor performs the massage. Years ago it was covered that way but my doctor doesn't do them, he has a therapist come in.


ISN Artist

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now