Scleroderma morphia

[Lelly13]

Hi I've just been diagnosed with scleroderma morphia. Haven't got a clue what's going on only the usual symptoms making too much collagen and knackered by 8pm. Can anyone enlighten me.

[LucyJean]

Hi there, were you diagnosed by a Rheumatology Consultant or a Dermatologist? What a shame they don't seem to have given you any information.

Here is the link to the SRUK website

sruk.co.uk/scleroderma/what...

And the scleroderma organisation

sclero.org/scleroderma/type...

And the scleroderma news website

sclerodermanews.com/morphea

From my knowledge the Morphea version of scleroderma is thought to affect the skin only and is not life threatening if that is in anyway reassuring to you.

I am sure there will be someone on here who has more first hand experience though.

All my best

Lucy xxx

[Lelly13 in reply to LucyJean]

Thank you soo much for your links. It was really helpful. I was diagnosed by a dermatologist after 2 skin biopsys.

[MilkMaid]

Hi Lelly, sorry to hear of your recent diagnosis, did the dermatologist prescribe any medication?

[Lelly13 in reply to MilkMaid]

Hi luvvy. I haven't got any medication yet. Got to go to the royal free hopital in January.so early days.

[edwardian]

Hi. I'm a 70 year old male and was diagnosed with Scleroderma Morphea 5 years ago. Like you I went through GP / Rheumatologist / Dermatologist and it took 6 months before I got the correct diagnosis. My symptoms were aching and cramps in arms & legs (with skin discolouration, inflammation, loss of muscle mass - I lost about 1.5 stone altogether), extreme tiredness and stiffness in arms & legs. The dermatologist prescribed Prednisolone, starting with a high dose and gradually tapering off over a 6 month period. This, plus a few lifestyle changes did the trick and apart from some residual stiffness in ankles and fingers I am now symptom free. I also put back almost of the weight, sadly mostly around my midriff!

I changed my diet and I think this helped. I no longer drink alcohol, eat a lot of fruit and vegetables (mostly through smoothies) and fish and also exercise every day, either cycling or Tai-Chi.

Hope this helps.

Kind Regards

[Hidden in reply to edwardian]

Hello, so glad you are feeling better. You said in your post that you had aching and pain in you legs, was it in the shin area? I get the most awful aching in my shins which I haven’t experienced before, I have had Morphea for about the last 5 years, the same as you, and up until a couple of months ago hadn’t experienced any pain. Did you suffer with aching joints at the beginning or was it something that came on later? I am trying to get an appointment at the Royal Free in London I will speak to them about Prednisolone

Thank you

[edwardian in reply to Hidden]

Hi Leo. Yes, I had terrible shin cramps, which I could only relieve by walking around the room. I also had them down my inner forearms down the side of my hand and into my little fingers. More generally, the aches were in my ankles, hips and wrists.. All symptoms gradually receded once the prednisolone took effect, with the ankle pains the last to go. Good luck with your appointment at the Royal Free. I was lucky to find a very know ledgeable dermatologist at the Nuffield in Brentwood, Essex.

[Hidden in reply to edwardian]

Thank you, that’s really helpful. Has your skin discolouration improved?

[Hidden in reply to edwardian]

Also, did your dermatologist give you a reason why the shin pain etc was so bad, is this just a side effect of the inflammation caused in the body by the Morphea?

[edwardian]

Hi. Yes, the skin colouration has been almost invisible for some time now. You can't see it at all in normal light. As for the shin pain neither the rheumatologist or the dermatologist could give a definitive answer. It was suggested that it was the overproduction of collagen replacing or pushing into the connective tissue and the muscle fibres that was the cause. Trouble is, it's quite a rare condition and the symptoms seem to vary a lot from person to person that there isn't a great body of evidence to refer to. I found that Ibuprofen helped a bit, but I didn't want to get reliant on them so just took them occasionally. Sorry I can't be of more help.

Stay strong, Edwardian

[Hidden in reply to edwardian]

Thank you so much, that’s really helpful. I agree totally with you about becoming too reliant on pain killers, it would be so easy to do. I am a pretty strong willed person so I will battle on, next step a Tai-Chi class!

Best wishes

Leo

[Hidden]

Thank you so much, that’s really helpful. I agree totally with you about becoming too reliant on pain killers, it would be so easy to do. I am a pretty strong willed person so I will battle on, next step a Tai-Chi class!

Best wishes

Leo

[Hidden in reply to Hidden]

So sorry that message went to you by mistake, slip of the finger!