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pamilla

Burning face.

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Hi everyone,

 

I have diffuse scleroderma and I am experiencing a new symptom that I haven't experienced before. My face is burning non stop and the only relief I get is with a wet face washer on my face. I have no sores or pimples, but have a couple of blisters on my skin and lip.

 

Can anyone enlighten me as to whether this is a typical symptom of scleroderma? (Been diagnosed for 10 years and not had this before) 

 

Thanks and would appreciate any input from others.

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Hi Pamilla,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with diffuse scleroderma for the last ten years and are experiencing a worrying new symptom. Please note I have no medical training, but I would suggest that burning skin is not necessarily a symptom of scleroderma per se, although I believe we have had members who've experienced this problem. Diffuse scleroderma causes the skin to tighten, so it's possible that it could cause a burning sensation on the skin. 

 

This is one of the problems with a complex disease such as scleroderma; it's easy to assume that because the disease is already present, any other symptoms automatically relate to it and it can blind one to any other illnesses which can have nothing to do with it. However, the best person to advise you of any changes and new symptoms is a listed scleroderma expert, who has the knowledge and expertise to deal with this complex disease and we always recommend that our members consult one.

 

Kind regards,

 

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Pamilla,

 

Welcome to Sclero Forums.  As it happens, it'd be a great idea for you to see the doctor about this.  It could be a run-of-the-mill skin disorder, such as eczema or rosacia, or even skin involvement of scleroderma, or any combination or other ailment or allergic reaction.

 

In the skin tightening phase, I've experienced various degrees of swelling, burning, itching, tightness, tethering, and paresthesia.  Once the tightening episode settles down, then the pain and discomfort largely goes away (at least, the burning, itching which was the part that initially nearly drove me crazy for a bit, trying to figure out what it was and how to cope with it.) 

 

Some skin conditions occur in plaques on just one side of the body, others occur pretty much in tandem on both sides of the body.  So one thing they look at is, is it just a patch, is it all over; is there a color change to it or not; is it scaling or blistering; is it growing or stable; does it peel or shed; is it red or hot; does it hurt or not, and what part of the face is it affecting? 

 

Get seen right away because this may be a treatable phase of inflammation, for whatever is causing it.  Please call the office of your listed scleroderma expert and ask them what your next step should be.  It's easier to quell scleroderma (and many other ailments) in initial stages, than to reverse any damage that has already accrued. 

 

And, please let us know what you find out.  My face alone has encountered scleroderma, microstomia (mouth becoming smaller due to scleroderma), dermatomyositis rashes around my eyes and scalp (misdiagnosed as psoriasis), acne, rosacea, eczema, actinic keratosis, age spots, and squamous cell -- often overlapping with each other.  It can help enormously to have a board certified dermatologist who has a strong interest in skin diseases -- many of them specialize in cosmetic procedures or skin cancers, so it can take some digging to find them but a good resource can also be a referral from your scleroderma expert. 

 

Always remember that just because you have scleroderma, it doesn't preclude anything else from happening.  In fact, in my case, I'd say it opened the immune system wide for nearly anything to waltz in and raise havoc, although things have settled down dramatically over the past few years, and I'm much better right now. 

 

I'm not saying you'll encounter all of this, I have a very rare case of overlap. But what I am trying to point out is that we should never assume that any new symptom is from an already-diagnosed condition.

 

If any symptoms is new or different or worse, please get it checked out promptly! 

 

:hug-group:


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.

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I had a burning on my face and I thought that it was PTSD. There are meds that can cause this. I could not even put my face up  in the shower, so a friend gave me a gel to exfoliate  and get rid of all the dead skin that usually sheds off.

 

I told my rheumatologist how it helped; I even got soft skin out of it and he said sometimes with scleroderma we don't have that happen because our sweat pores get plugged. I have that problem with my feet; I caused blisters and open sores as I started to use a Palma stone to remove the calluses off my feet. I also have a prescription to help open the sweat glands, then she suggested soaking my feet 2 to 3 times a week so now when I take a shower I plug my drain so I get a good soaking. You might try these, but please remember that this does not work for everyone.

 

I send you a blessing.

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Thank you all for taking the time out to reply to my post.

 

My face is still burning it's so uncomfortable, it's hot and the skin is reddish, no sign of tightening as yet. Why I thought it could be scleroderma, I lost my kidneys to scleroderma a few years back and ended up on dialysis, but prior to the renal failure diagnosis my whole abdomen was burning, skin was reddish and hot: it stayed like that for a short time and then it went tanned, then finally the skin just peeled off. It was literally like a sunburn,by the time I got to see the specialist it was too late and the damage was done. So for me I am wondering if the burning sensations are a signal sclero is active ?  As this burning face is the same sensation as my stomach burning all those years ago, has anyone else experienced burning, tanning and peeling of skin prior to renal failure or other organ involvement?   

 

I understand that no two people are the same when it comes to scleroderma, but would be interested to know if others get a burning sensation first?  I have an appointment next week with my doctor.

 

I am also experiencing sudden onset of hot and cold episodes very flu like, ugh.

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Hi Pamilla,

 

I have to admit that I've never heard of burning sensations, prior to a scleroderma flare (certainly I had no such premonition before my lung involvement.)

 

However, as Shelley and I have advised, any symptoms which are new and are concerning you, should be reported to your scleroderma expert; as you have a doctor's appointment next week, that would be the ideal opportunity for you to discuss these worrying symptoms with him and see what he advises.

 

Kind regards, 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Pamilla,

 

Burning sensations can occur with the development and progression of scleroderma skin involvement (and of course with other far more common conditions.)  So, the sooner you get checked and begin quelling the inflammation, the better!

 

:hug-group:


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.

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Thank you all for your input,  I am a tad surprised no one else had burning, redness, tanning then peeling, before major organ involvement; that was my first symptom of the oncoming renal failure, followed by high blood pressure, vomiting and itching etc. Scleroderma is indeed a tricky illness!

 

The burning face mystery has been solved; my doctor asked me a series of questions like, "have you changed your diet, washing soap, new tablets (vitamins) etc". then it hit me. One thing that did change happened a week earlier; the light globes in my lounge and bedroom blew out. I live in a retirement village so I rang the office to get maintenance men to change my globes. It is in my records to not use those new lights that are curly in shape as they omit ultra violet light; I can't sit under them as I get a BURNING FACE, so when I got home there was a note on my table saying they had changed globes for me and I assumed they used incandescent lights but they didn't, they forgot and put those UV globes in and I had been sitting under them all this time. So I rang the office and they came and changed the lights to incandescent globes and within 24 hours the burning stopped! I rang the doctor and she inferred that it was not that uncommon for patients with autoimmune disease to react to UV globes, so the mystery is solved. I am so relieved; it's like sitting with your face into the sun getting burned and you can't stop it.

 

So, so happy and thank you all for taking the time to respond to my topic..

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Hi Pamilla,

 

I'm very glad to hear that the mystery of your burning face has been sorted out and hopefully you will have no more problems with it.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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