Thank God Summers coming?: Hello... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Thank God Summers coming?

Jonm profile image
Jonm
9 Replies

Hello everyone I am new here. I was diagnosed with Raynaud's in January this year having experienced it on and off for about 2 years. My Raynaud's is only mild so far, so I can't complain.Thankfully I am learning that everyone's Raynaud's is different and you can learn a lot from this site.

The first time I had an attack was on Plymouth Railway station in 2010 it was about -4c and I was suddenly aware of my hands being excruciatingly cold and three fingers being white.I just assumed it was due to the cold. It happened a few more times but always when it was cold. The weather warmed up and it stopped happening.The following winter the pattern was repeated however there where some subtle differences.The most obvious ones being going to the supermarket. Why are they so cold? and getting items out of the fridge.That was enough to trigger an attack. A little bit of Google Doctoring was required.I didn't go specifically to my GP about Raynauds but mentioned it when I had a bout of Tonsillitis I had some pictures on my phone of my hands and she was very supportive even mentioning that she suffers from it. So here I am now looking forward to warmer weather.Today anything below 6c can trigger an attack.The attacks are more frequent, instead of three fingers its now seven.The next big challenge is to wear gloves in Tesco when its a lovely sunny day outside.Wish me luck!! Thanks for reading and say hi if you have enjoyed this little Raynaud's ramble.

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Jonm
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9 Replies
Rp321 profile image
Rp321

hi, i completely agree why on earth do supermarkets have to be so cold!!!!!!!

I also wear gloves in tesocs - i get some really funny looks if i have to get somthing out of the freezers i grab it as fast as possible and hold it only by a tiny corner - it looks like im handeling a bomb or something lol.

I have found it really interesting to see how everbody experiences rayanuds differently but at the same time has simulariites to.

zenabb profile image
zenabb

Good description of Raynaud's Jonm. You have to laugh a bit Kaz321. I wear my silver gloves from the RSA nearly all the time. They are thin enough for handling most things including the deep freeze at the super market. But if I can I prefer to ask someone else to do it for me.

Roamer profile image
Roamer

I've had it for about 18 months now and have to wear gloves inside and out (I'm typing in them now!) - drives me potty, but it's better than the pain and ulcers.

Shorts and gloves is a strange look, but one I model. lol. The looks are priceless, but I'm past caring!

Good luck in Tesco!

dawgjones profile image
dawgjones

I have come to realize that all of you are in the UK. I am in the US. I have Raynaud's as well, but is the result of systemic scleroderma. I wear gloves all the time and sometimes people will ask me what are the gloves for. It doesn't matter what time of year it is. I found out that swimming is out for me as my hands turned blue. Any major shift of temperature regardless of season will shut down my hands. My doctors did tests and showed that four of my fingers have virtually no pressure to push blood through them and they are the ones that ulcerate. Two of them ulcerated almost to the bone. My rheumatologist put me on nifedipine which is normally used for high blood pressure, but has been studies in people with Raynauds and helps keep the blood vessels as open as possible. It helps, but I have to wear my gloves all the time. As a result of the Raynauds, the scleroderma and the pulmonary hypertension caused by the scleroderma and the fact I am oxygen dependent, I am totally disabled. I would rather work, but I can't and all of my doctors stated in their charts that it was their medical opinion I could no longer work and I was approved for our Social Security disability in 24 days. I wish you luck with your Raynauds. If you have no done so yet, I would also ask your doctor to test you for scleroderma as Raynauds is usually the first symptom seen in scerloderma. I wish you well and hope this helps.

Grandma7 profile image
Grandma7 in reply to dawgjones

Well I too am in the US. From California in fact an 4yrs ago was told I have scleroderma in the form if CREST syndrome.. I also have type 2 diabetes so when the toes an fingers turned purple I thought it was from the diabetes.

Was tested an the doctor told me to what I use to do in work? No longer can do so now I am disabled an want so much to work..my husband got me a touch screen phone an tablet due to the keys hurt my finger tips. Every morning I get up finger are tight an swollen. I even have to test my blood now on the arm or palms less pain..i take the same thing you do Nifedipine.

I try to walk a little further but can't hurts to much but carry my cane at all time when needed. But last doctor visit everything's fine they say if any pain let them know cause that is all they can do . Arms still ok hasn't gotten to tight but can't have surgery for the build up calcium by the elbow. That part is tight they don't want me to have a open wound would be hard for stitches. So your not alone but I do feel like that here in the valley.. Good luck stay well.

Grandma7 profile image
Grandma7

Hello an you are not the only one that is wishing for a speedy summer..I welcome the high temps even though sorry to say everyone else is suffering the heat..

As for you white finger tips? I get that also on the toes an not feeling nothing while you walk is freaky..but man the pain in warming them up in water hurts but when I see the pink in them I know I got the blood flowing..an yes I feel like you everyone wearing short sleeves I wear long an go shopping with gloves cause it's cold inside.. Any temp under 80 is a tad cold for me. 80 an uncover love it...

Hang in there is all I can say I am still new to this but the legs suffer more then the hands..there to tight..an the hands an face get the red dots..

So stay warm...

bookworm profile image
bookworm

Hiya this website has been a great help to me as well, i only have mild raynauds. Looking forward to the sun and the warmth. Still have to look like a wally wearing gloves and many layers and wearing gloves. Supermarkets, shops and their air conditioning - several times I have to walk out of shops cos they are too cold. Also sometimes its not just the condition you have to deal its people's ignorance. I'm also on nifidepine - 3 times a day - when i rembember to take them 3 times Stay well everyone and take care.

ceegee profile image
ceegee

@ bookworm

air con is a nightmare full stop. they do say tho to try and stay away from it as it triggers attacks, as I found out a couple of weeks ago while visiting a friend on a cardiac ward. they had the air con on in her room and I had to leave as i suffered several attacks during the time we were visiting. I was really glad to get back out in the sunshine and warm up.

it still amuses me tho after all this time to watch my fingers and toes change colour from white to black (blue as they call it but to me it is black) to red then to a heathly pinky colour lol.

and here is to the warmer months coming.. cheers :)

bella99 profile image
bella99

I am new here- from New Zealand- I have been wearing gloves for 3 years and have been to five doctors, 2 specialists in this time. I went to a foot doctor after years of pain and he told me I have Acute Raynauds- I went back to my doctor and she said I don't think so- While I am taking 25 pain pills a day to stop the feeling of walking on glass with my feet every day and people at work laughing at me for wearing gloves.....I went to another doctor he said we will try Amlodipine- in one week the pain was gone, but the doctor still thinks i have a vascular problem because I don't go blue, only white and pink.....I love reading these stories as it gives me hope that one day I may get a diagnosis.

He said I may have sceradoma, but because the blood test came back normal he now very negative that I have nothing wrong with me- just like what all the specialists have said...where do I go from here.......

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