Is Raynaud and Scleroderma one in the... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Is Raynaud and Scleroderma one in the same?

Discontent profile image
8 Replies

Having same issues with 2-digits being ulcerated, now am having skin discoloration in hands, itching reaction which has caused bruising, weight loss, numbness in arms, hands, sweating profusely only at bedtime, sleep deprivation.  Am concerned, yet there seems to be no answer why?  Veins are so visible , do not have any blockages, nor masses in chest. yet this is on-going only at bedtime.  Does anyone out there relate to this?  I am so concerned, especially with the weight loss,  all blood work  and organs are stable.  Hospital thinks I am a 51-50 (mentally unstable-imagining  symptons ) , just for attention not true.  Pain is unbearable still.  Had an IV tranfusion, do not know if it worked, new stuff has occurred as I listed above.  Rash on both arms after this treatment.  Can anyone relate ?  Thank-you.

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Discontent
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marilynmcl profile image
marilynmcl

I have been diagnosed with systemic scleroderma and secondary Raynauds is associated with this....there are two types of Raynauds but secondary R's is the one which is common with this S.Sc. Have you been referred to a rheumatology consultant yet? If not, then ask your doc for referral. Good luck and hope you feel better soon.

Discontent profile image
Discontent in reply to marilynmcl

Oh thank-you for your reply.  Yes, I am seeing a Rheumatologist, who did not know what my fingers  (2-left digits) were doing months ago until they ulcerated.  No darkening of the two middle fingers, however something is litterally eating my fingers.  Said there was a fungus.  Raynauds is still questionable.  Pain never stops. Had 2nd opinion, he was sort of baffled.  I have SLE-Nephritis-Gastritis.  Now almost 34 years.  Had IV fusion, now skin is discolore, and have rash on both arms.   Thank-you for your response.

Annie99 profile image
Annie99

I've had the numbness in the arms and legs during the night.  It would take about 20 minutes each morning to shake it off.  When I sat too long at work my legs would begin to feel like cement.  I lost a lot of weight as well, and quickly.  No pain though, none at all.  Went to a rheumatologist and had several blood tests.  I had a low ANA positive, but eveything else he tested for was negative.  The numbness went away after about 3 - 4 months, weight came back on, and that was the end of that.  That was about 4 years ago.  Personally, I think my body was just adjusting from the withdrawal of birth control pills and anti-depressants.  That's only a guess.  The doctor didn't know what it was.  Anyway, let's hope your's goes away too!

Discontent profile image
Discontent in reply to Annie99

Thank-you Arnie. Similar symptons. ?  I am so miserable.  Nothing seems to work.  I am so depressed.  I do not know what a ANA is.  Numerous blood tests, x-rays, medications, creams (topicals) eating moreso, yet thinner.  Bowels are good some days, other days not good.  must be from the opiads I am on.  I have a RA, and she is baffled.  And I was angry, because she is A Specialist in the field and did not catxh this until my fingers have ulcerated to half/moon.

tall-tim profile image
tall-tim

"Pain is unbearable still." Where is the pain?

What is your official medical diagnosis, and who made it?

Discontent profile image
Discontent in reply to tall-tim

Yes Tall-Tim.  Many months of this in these 2-left digits.  They said I have Raynauds, but my fingertips are not "black". I have SLE-(nephritis) now 34 years, never have ever had this.  I was diagnosed in 1982 -August 8th one month after my son was born.  Surgery to prevent pregnancy.  Was fine in 2014-up until-8-2015 when this finger started erupting,  I am right-handed,  This middle finger is severely damaged, then the left-middle finger started on the opposite side, not as severe but nevertheless just as painful. Said fungus is the culprit.  My hope again, is to do internal biopsies in different areas of organs to see if it is internally-spreading.  All bllod/urine test indicate CLEAN.  What is this then?

christef profile image
christef

Discontent. I have Raynards and my fingers don't go black. They go white like there is no blood in them at all. My toes as well. My fingers burn and hurt like Ive been stung and then show like red blisters and get really itchy. After a while it all goes away and my fingers and toes look sort of normal again.  Don't have a fungus as such.  Do hope you get eveything sorted soon. Good luck.

Discontent profile image
Discontent in reply to christef

Oh than you Christef:  You know, as of last week, they said I have something that starts with an "O" can not think of it, but told me to take vitamin C, zinc twice a day, and a multi-vitamin.  I am using a rectal numbing cream on the right digit that is severely eaten away, not to the mid-line but close enough.  It itches around the wound, pusses, bleeds a little, but now being that it is numb I have been able to sleep more.  My left middle toes get numb, but there are no lesions  anywhere else.  This is so debilitating, especially when  the weather changes.  Pain.  Mittens on and so the day begins.  Waiting to see when scraping will begin, so I can re-live my life with my hands.  Thank you for sharing.    Discontent

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