why??

[Cherelle16]

i dont get it, this is a scleroderma and raynauds website. WHY? are these 2 things linked ?? I have scleroderma, does this mean i have raynauds too :$ im comfused!

[ceegee]

It seems the 2 can over lap in some cases but not all. I suggest that if you have concerns then I would advise you speak to your GP about it

Taken from the Medicine net website

How is scleroderma classified?

Scleroderma can be classified in terms of the degree and location of the skin involvement. Accordingly, scleroderma has been categorized into two major groups, diffuse and limited. However, the terminology in the literature varies; for example, some investigators term the two major groups localized and systemic.

The diffuse form of scleroderma (systemic sclerosis) involves symmetric thickening of skin of the extremities, face, and trunk (chest, back, abdomen, or flanks) that can rapidly progress to hardening after an early inflammatory phase. Organ disease can occur early on and be serious. Organs affected include the esophagus, bowels, and lungs with scarring (fibrosis), heart, and kidneys. High blood pressure can be a troublesome side effect.

The limited form of scleroderma tends to have far less skin involvement with skin thickening confined to the skin of the fingers and face. The skin changes and other features of disease tend to occur more slowly than in the diffuse form. Because a characteristic clinical pattern can occur in patients with the limited form of scleroderma, this form has taken another name that is composed of the first initials of the common components. Thus, this form is also called the "CREST" variant of scleroderma. CREST represents the following features:

C...Calcinosis refers to the formation of tiny deposits of calcium in the skin. This is seen as hard, whitish areas in the superficial skin, commonly overlying the elbows, knees, or fingers. These firm deposits can be tender, can become infected, and can fall off spontaneously or require surgical removal. This is the least common of the CREST scleroderma variant features.

R...Raynaud's phenomenon refers to the spasm of the tiny artery vessels supplying blood to the fingers, toes, nose, tongue, or ears. These areas turns blue, white, then red after exposure to extremes of cold, or even sometimes with extremes of heat or emotional upset. This can lead to tiny areas of damage to the tips of the fingers (digital ulcers) or larger areas of dead skin on the ends of the fingers.

E...Esophagus disease in scleroderma is characterized by poorly functioning muscle of the lower two-thirds of the esophagus. This can lead to an abnormally wide esophagus that allows stomach acid to backflow into the esophagus to cause heartburn, inflammation, and potentially scarring that narrows the esophagus. This can eventually lead to difficulty in passing food from the mouth through the esophagus into the stomach. Symptoms of heartburn are treated aggressively in patients with scleroderma in order to prevent injury to the esophagus.

S...Sclerodactyly refers to the localized thickening and tightness of the skin of the fingers or toes. This can give them a "shiny" and slightly puffy appearance. The tightness can cause severe limitation of motion of the fingers and toes. These skin changes generally progress much slower that those of patients with the diffuse form of scleroderma.

T...Telangiectasias are tiny red areas, frequently on the face, hands, and in the mouth behind the lips. These areas blanch when they are pressed upon and represent widened (dilated) capillaries.

Patients can have variations of CREST, for example, CRST, REST, ST, etc. Patients can also have "overlap" illness with features of both CREST and the diffuse form of scleroderma. Some patients have overlaps of scleroderma and other connective tissue diseases, such as rheumatoid arthritis, systemic lupus erythematosus, and polymyositis. When features of scleroderma are present along with features of polymyositis and systemic lupus erythematosus, the condition is referred to as mixed connective tissue disease (MCTD).

[SandraMarie]

I think the above has given you a very informed answer, which I'm surprised your consultants hadn't already given to you.I was told ,and read on leaflets that I was given, that although people with Raynauds don't automatically have Scleroderma, the reverse is so. I believe it's all to do with circulatory problems.

[Sylvia65]

One important thing...try not to worry about it !!! If you have Raynaud's rest assured - believe I am right in saying - you would know !!!

[Cherelle16]

thankyou everyone :)!!

[living-the-dream-ssc-ray]

Hi Cherelle !

Sylvia is right - if you had Raynuads you would know !

I am lucky enough (have to remain positive lol) to have had diffuse scleroderma and raynauds for 14 years now !

The raynauds part is my challenge at the moment as my fingers and toes go blue and white at the smallest drop in temperature - even getting something out of the fridge will activate my fingers to change colour. When the circulation returns it brings along a very painful sensation. I

have had all sorts of treatments in the past for it, some with some horrendous side effects (Viagra, Iloporst infusions).

I am curretnly on my second 6month Bosentan regime which certainly helps reduce the attacks and the ulcers which follow. i spend all year wearing Ugg boots and thinsulate gloves and at this time of year I look like an eskimo who is housebound due to the cold !

Ceegee - Thanks for the reminder ! however, in my experience the calcium are not small lumps - I had one in my right knee which was the size of a marrowfat pea ! i almost passed out when I eventually managed to pick it out and i saw the huge hole which it left ! This has now healed (thank goodness) however I have a scar to remind me !

So all in all living the dream with systemic sclerosis and raynauds

[Marytsa in reply to living-the-dream-ssc-ray]

After reading your post I feel better thank you!!! I was diagnosed with diffuse scleroderma with the CREST and they told me I only had 15 yrs to live!!! It's been five years of living in fear thank you for giving me hope.

[BIGI in reply to Marytsa]

Take a sec and look at the bottom of both of your feet. I believe that you will not find that you have an expiration date. So, don't let anyone tell you that you have X amount of years to live. Only God knows...and He ain't tellin'. Blessings

[BIGI in reply to BIGI]

Sorry... I meant to say that you DO NOT have an expiration date!!!! Please forgive me. My bad!!!!

[Marytsa in reply to BIGI]

Thanks!!!! But aren't we suppose to trust doctors??? Lol you guys are the best thanks for making me feel better. And putting a smile on my face.

[BIGI in reply to Marytsa]

Oh my! Of course we trust docs! They are a gift from God and they do know their statistics. But, try hard not to allow yourself to think like a statistic. Take your meds and be a good, informed patient. AND...remember...no expiration date is stamped anywhere on us. LOL

Take care.

[Marytsa in reply to BIGI]

Thank you!! I do have faith in God and I know he will lead me.. Thanks again

[jillian0428 in reply to Marytsa]

there are alot of BAD doctors out there..so remember to always get a second opinion even if you think it may insult your doctor...its not his life...its yours and stay in control..stay informed and be proactive..be smart for yourself..you are worth it!

[living-the-dream-ssc-ray in reply to Marytsa]

Ah Mary Bless you !

I was diagnosed in Sept 1997 by a professor in Nottingham who told me I would be in a wheelchair by Xmas and 15months max.

At that time I was working as a pharmaceutical rep studing a postgraduate diploma in law working towards fulfilling my childhood dream of being a barrister. The Prof told me to give up studying law and basically give up everything.

Well cutting a very long story short, I changed my healthcare to one of the most internationally recognised experts in Scleroderma and Raynauds, the wonderful Professor Black, who within 30 seconds of my being in her company on the first consultation I knew that she wanted to get and see me better ! And Indeed her and her team, now headed up by the honourable Prof Denton, supported me throughout the last 14 years, helping me achieve my dream as well as treating me through a very aggressive 5 year intial onset of Scleroderma and Raynauds !

So again fast forwarding through the details- I was called to the Bar in 2001 and became a practising barrister in 2003. Unfortunately, the happily ever after bit of this story is a little different than I had envisaged, as in 2005 I had to give up my practice and return to my home town where I had grown up and had not lived for 13 years, to be nearer my family (although, bonus as I now live on the coast near a very beautiful beach!). The 60hour per week hamster in a manic wheel lifestyle did not get on with the scleroderma and raynauds symptoms ! Also during this time of trawling around different courts across the country, I was being weaned off and ceasing the 7 years of the daily 2g mycophenolate medication.

So fast forwarding again - all is good, as I achieved my childhood dream, (well one of them !) in that I have appeared in all courts, predominantly the crown court.

I now offer my skills voluntarily to the local authority on disability and equality policies, as well as in the 3months of the weather being warmer, I am a volunteer education presenter for the RNLI. I absolutely love going talking to school kids as well as brownies, cubs etc about how to be safe at the beach and all about the lifeboats ! This is whilst I master the Raynauds challenge as I live in Ugg boots and thinsulate gloves all year round as well as looking like an eskimo during autumn and winter ! I am currently on my second 6month course of Bosentan which is reducing the attacks and the ulcers so happy days !

So you go girl ! Keep your dreams alive !

Get your gp to refer you to The Royal Free hospital in London which is an expert centre, and what they do not know about this disease and its health challenges is not worth knowing !

Also I must share this with you as I am so excited - for 14 years I have been actively searching a cream for preventing the calcium lumps - anyway I started using pawpaw lotion on my hands feet face and knees a few months ago - I cannot believe the results - amazing.

so I will finish my essay to you ! keep chasing the rainbows ! and know that the medics do not always get it right when they are informing of worst case scenarios ! I love listening to hayhouseradio.com , and in particular Louise Haye and Dr Wayne Dyer who tell me that figures on tests are just that - figures ! Its how you feel within yourself and what you are doing to nurture yourself which are the true indicators !

Stay and keep well my friend

[Marytsa in reply to living-the-dream-ssc-ray]

Thank you so much for the information!!! And the pep talk!! London here I come!!!

[Hidden in reply to living-the-dream-ssc-ray]

PawPaw lotion, seems great where can you buy it and what cost please.

[living-the-dream-ssc-ray in reply to Hidden]

Hi osborne

it is only available in shops in Australia ! i live in the UK so I ordered mine from the site makeuwell.com I really hope it works for you also !

[ceegee]

@ living: lol thanks for that image.. was just eating something in which i also dig out the centre leaving a hole LOL

[living-the-dream-ssc-ray in reply to ceegee]

haha

[living-the-dream-ssc-ray in reply to living-the-dream-ssc-ray]

synchronicity !

[jillian0428]

raynauds is a symptom of scleroderma