Over the past 17 years I have managed Reynaud's. Since being diagnosed with Scleroderma 3 years ago, I have noticed

[titanicus]

a significant change in my Physical condition,some of which are very disconcerting.

I am sure that the people on the Forum may be able to help me with some of these worries.

I enjoyed the extended Summer, however, last week when the temperature dropped I experienced the dreaded onset of constant pain.

The worrying thing is that body has totally changed. ' Werewolf'. It sounds crazy but to me it's a good analogy of what's going on.

This is something I haven't experienced. My skin has gone like Leather and it is flaking , akin to something like when you get sunburnt. I have also noticed unexplained cuts on my Legs in particular, also bruising and livid lumps and annoying itching.

Can anyone shed any light on what is happening?

I shall see my GP and make an appointment with My Rheumatologist.

Just need some advice about the above to put my mind at rest. I'm sure there is a logical explanation.

[Hidden]

That'd be the scleroderma I'm afraid. It's a progressive disease - you wouldn't just stop short with the raynauds. Have a read of the scleroderma society website and the raynauds and scleroderma association website for the best information. X

[titanicus in reply to Hidden]

Thank you, I shall do that.

[lifeforce]

Sorry to say nothing about Scleroderma is logical. I have had it for 14 years,the diffuse kind and at first it felt as if an alien had invaded my healthy body,I was 42 at the time. This is what I have found, the lumps and itching are calcium under the skin, the dermatologist helped with Cetafil,nonsoap for bathing followed by Cerave lotion, it has helped me immensely. Also try not to scratch, you can start open ulcers that can take months to heal. The more clothes you can wear to raise your body core temperature will make you much more comfortable, I am miserable with anything under 70*. If you don't take an antidepressant I would suggest one,this disease can bring on panic attacks and I take Zoloft and it helps. Also take a iron and magnesium supplement,the iron will help with anemia and magnesium will counter-act some of the calcifications. And if you get so cold you cannot warm up take a hot soaking bath and raise your core temperature. All this is just what I have experienced and I have found very few doctors have a common,daily sense of this disease. Good Luck to you!!

[julielu in reply to lifeforce]

Ok I wanted to suggest to titanicus to look into vit D and K2 effects, but i don't have medical / nutritional therapy qualifications. But it occurred to me that Vit D was involved. but when life-force said about calcium deposits i just had to "jump in".

Deficiency of K2 has been linked to artherosclerosis (hardening of the arteries - which take on bone like matrix - they harden due to incorrectly deposited calcium. ( Cholesterol is not the cause but the body response repair mechanism)

It seems that Vit D creates bone like structure with sufficient K2 to inform the D to correctly deposit calcium. But when K2 is deficient, instead of directing it into strengthening bone it goes into soft tissue. Canadian Kate Rheame-Bleue explains much more fully in the "The Calcium Paradox ..."

By the way being a fat soluble vit K2 needs to be consumed with fats. Sources of K2 include pasture fed animal meats/ fats and full fat dairy. Yes the very things we have been told Not to eat for many years......Please check this out.

Lifeforce is there an explanation for scratching "can start open ulcers that can take months to heal."

[titanicus in reply to julielu]

Thank you for your reply.

My problem doesn't involve Vit D deficiency, it is Vitamin B. My GP gives me an injection of this every few months.

Having a balanced diet is an absolute must, as my stomach will not tolerate anything 'Alien' in it's domain.

On a lighter note, I am reliably informed that a pint of Guinness works wonders in the Vitamin and Iron Department.

Thanks again.

[Hidden in reply to julielu]

Wow this was interesting to read 👍

[titanicus in reply to lifeforce]

Thank you Lifeforce, so it Isn't only me. Countless times over the years I've been in a GP surgery thinking to myself....'Am I a blind, deaf, mute?' Or maybe a Hologram we made earlier.

However, my Consultants at the Hospital do compensate for this.

I have been on Sertraline for the past 6 years or so. Anxiety and Panic attacks happen very frequently always from now until about April.

My main concern now is the worsening condition with the Lung Fibrosis, I am due the flu jab soon and this usually alleviates my current chronic breathlessness.

Sorry! You aren't an agony Aunt! I just feel that you are on the same page as I am and I appreciate it. Take care.

[lifeforce in reply to titanicus]

You are very welcome, hang in there!

[graygirl1]

Hello titanicus, It is a worrying condition which seems to increase in symptoms each day. You must be well and truly fed up with the discomfort. I have fewer symptoms than yourself nevertheless I can empathise as I know how you feel. I have a lot of dryness and itchiness and my skin seems tougher than normal. I also seem to be allergic to most things apart from the skin treatment prescribed by my GP. I am not seeing anyone special for scleroderma as it is manageable so far. Your GP is doing the right thing by referring you to the Rheumatologist. I am sorry I cannot offer any words of wisdom except to say I wish you well and hope things will soon settle down. Of course we now have the cold months to cope with so we all need to take very good care of ourselves and continue to support each other as much as possible. Good luck!

graygirl1

[titanicus]

Thank you Graygirl, you are a shining light, as are so many on the forum.

Everyone is in a dark, confused, painful place at one time or another, particularly starting from now into winter.

I take strength from the kind words and wisdom of people who can understand the rollercoaster that we are required to ride.

Take care.