Does anyone recognize these symptoms?... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Does anyone recognize these symptoms? Any tips?

_7810
_7810

Having bloating, heartburn, pain in joints, weird small veins appearing on rib cage and on one leg, strange pin sized bruises looking like a rash of some type that comes and goes randomly. My eyes will go blood shot, vision will blur, I feel nauseous with headache. Some days I have diarrhea and some days I cannot go at all! I’m tired and feel like I am struggling within hours of waking each day! Some days i can’t even lift my head! ANA test was positive, tests showed Scleroderma. GP has referred me to Specialist. I’m also freezing and only a warm shower will give me relief. Any one recognize these symptoms? Could this be Scleroderma? It’s two months out till my appt. and I want to do what I can until then to feel better. Please help!!

16 Replies
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Ok. Try to stay calm, first. I know it is difficult. Trust me. Stress will only exacerbate any symptoms. Try to rest and stay warm. Don’t go out unless you must. I will try and gather some information. I am sure someone will chime in soon to help as well. Stay calm. 🌹

Have you gone to the SRUK website? There is a telephone number to ring for support as well, I believe.

_7810
_7810 in reply to amc282

Thank you! I will check out the SRUK site.

Have you been able to contact SRUK, yet?

_7810
_7810 in reply to amc282

Checking it now

amc282
amc282 in reply to _7810

Look at this website too. Based in the US in Michigan, I think. I found it through the foundation.

selfmanagescleroderma.com/d...

amc282
amc282 in reply to _7810

Also us based:

sclero.org/scleroderma/expe...

amc282
amc282 in reply to _7810

Looks like there is a center in South Carolina. I am Originally from the US.

sclero.org/scleroderma/expe...

Hi, I wouldn’t want to give you an incorrect diagnosis but I can give you some info from experience. I have had systemic sclerosis for over 7 years now, everyone’s experience can be different how it comes on. Mine started with all over joint pain n tiredness, a couple of years in I was so cold it was unbelievable n years later I noticed the veins and now have reflux/heartburn but only in the last year. I have had a lot of other symptoms n problems but none that you mention. Has your hand/s flared up at all? I think that is quite often a key indicator of scleroderma. My right hand went huge overnight. Fingers swollen, skin tight. That was in fact my first symptom. Please try not to worry till you actually see what you are dealing with. From my experience there is very little you can do to reverse auto immune diseases so don’t fret that you’re wasting precious time n the next couple of months. You can maybe use the time to research carefully on where you’ve been referred to. See if anyone has experience of the hospital/consultant. Ensure you are getting the best care. Please don’t get drawn in to the alarming articles on mortality rates etc. They are most definitely worst case scenario n the illness affects everyone differently.

Good luck

Bruffingtons2
Bruffingtons2 in reply to momo17

Hello to you M17!

Interesting to hear about your swollen hands and fingers... and sorry to hear as I have similar .

How long ago as this and have the fingers and hands reduced to their original

size now and how are they mobility wise?

I find tight wrists hurt so much and back of hands tight too.

Doing exercise and creaming helps.

I am informed it is possible to halt scelrosis (as it is called )

with immunosuppressants.... takes time though.

Take care

Bruffingtons

momo17
momo17 in reply to Bruffingtons2

Hi bruffingtons2. Unfortunately my hand has remained swollen n is now both my right and left. Skin is so tight my fingers are curled and like you can’t flex my wrists at all. It’s a real struggle as grip impaired. I am on highest dose of immune suppressants for about 4 years now but it’s failed to help my hands. It’s just a classic scleroderma trait I think!

Best wishes to you

_7810
_7810 in reply to momo17

My hands have only felt very tight and full when I wake. But this isn’t every morning. My feet will randomly do the same. It’s like my fingers are little fat sausages but after about and hour of movement they feel fine. My elbows and wrists are achy this week.

You do not say where you live... but if you can get to London safely.... The Royal Free in Hampstead (UCL) has an excellent centre apparently.

There is also a good female consultant at Birmingham apparently an a unit in Bath mentioned on this website recently.

Good luck... there are lots of kind people on this website who can help with their vast

experience. Keep in touch.

Be safe and get a diagnosis if you can soon and much love...

take care.

Bruffingtons 2

_7810
_7810 in reply to Bruffingtons2

Thank you so much. I am in the US in the state of Georgia.

amc282
amc282 in reply to _7810

Go to YouTube and look for videos from the scleroderma foundation and inspire.

scleroderma.org/site/SPageS...

That’s unusual if they seem to improve throughout the day to the point of normal. I don’t have any experience of that.

I am also on inspire which is a similar forum to this. There is a lot more info on it re excellent American consultants and treatments if you haven’t seen it already.

I think the us probably more advanced re stem cell etc.

Regarding swollen hands, I saw Occupational Therapy and they prescribed edema gloves for me to wear overnight, and any time I am sitting still. You do need to get ones of the right size, that are firm but not too tight - don't want to cut off blood circulation. They definitely make an improvement, hands are less swollen and stiff in the morning.

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