Feeling alone

Hi Im new on here. I'm 49 and was diagnosed 15 months ago with limited scleroderma. Although they say I've had it a long time but have been mis diagnosed. I've just started a new treatment for all the aches and pains called Hydroxychloroquine, I'm hoping it works and gives me some relief. My face worries me the most, the tightness, jaw ache and my mouth changing. It really gets me down and when I've mentioned it to the consultant I don't get any answers. I've found everything out myself, mainly from this site so thank you. Im trying to stay positive but it's really hard some days. Any advice on facial exercises would be really helpful? 

5 Replies

  • Hi Fee66...I also have limited scleroderma, diagnosed last October after a couple of years of tests which were largely inconclusive. Mine affects mainly my hands. I've been on Hydroxychloroquine since the diagnosis and it has helped with my energy levels and also reduced the skin splitting and puffyness in my fingers tips. Have you asked your Dr for a referral to a physiotherapist - they would be able to give you exercises; there are references to exercises for scleroderma on-line, but I would think that any exercises would need monitoring. it's hard not to worry especially as it seems that because the condition is quite rare and many docs don't know very much about it, you have to chase people for information and try and sort things out for yourself- hard, when you are getting used to a diagnosis and trying to cope with all of the relevant symptoms and the days that are bad. Stay strong....

  • Maybe you could try to get a referral to Professor Denton in the Royal Free Hospital. I was in Ipswich when I was diagnosed with Scleroderma/Polymiositis and my rheumatologist referred me. He is one of the best and his specialist nurse gave me a booklet with facial exercises to stretch the mouth and keep other areas of the face supple. 

    You could probably contact the Royal Free yourself to get a copy of the booklet. 

    It would certainly be worthwhile trying to get an appointment with Professor Denton. Take a list with all your symptoms to discuss with him. This is the best because it is so easy to forget something you wanted to discuss.

    You can find information about Professor Denton from this website. Good luck.

  • I was diagnosed 2 years ago and my worst symptom is the pain in my feet.  I have seen many different consultants, including Prof Denton but no one can tell me for sure what is causing the pain.  I also am suffering problems with my face. aching jaw, shrinking lips with peeling skin which looks like tissue paper and wrinkles around my mouth.  I have also developed a dent in my forehead and another on my scalp.  I have done a lot of research myself and came across an article on fat transfer which seems to be having good results on the face for scleroderma patients.  I asked at the royal free if I could have it done and was supposed to have it a couple of weeks ago but unfortunately my operation was cancelled.  I have a new appointment for next week and the surgeon is also going to do the procedure into my feet to see if it will help with the pain.  I had to suggest all this myself, but if you don't ask, you don't get, I am just hoping it works.  It may be a solution for the problems you are having and certainly worth enquiring. 

  • Good luck with your operation, I hope you get a good result and please keep me up to date with how it all goes. Thank you for your reply, it's so nice to know your not alone. 

  • Hi Fee,

    I had very rapid microstomia 20 years ago and a very taut face, it got better after the 5 yr treatment. I am 60 now and slowly beginng to sag, my mouth got a bit bigger but it is still very thin. I do not believe anything helps, no facial exercises, that is why we don't get any answers only irritating silence. Just be happy that it is only limited.

    Best wishes.

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