Scleroderma & Raynaud's UK (SRUK)
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The one thing you hate

What's the one thing you hate about your condition. I have Raynaud's disease. the thing I hate more then anything is people telling me I just get a bit cold, people don't understand nor try to understand the daily struggles sometimes.

The Sunday just past I was out with my partners family on the beach, wearing black skinny jeans and a jumper, that's how cold I get (it's was about 40 degrees)

So in the winter or colder days I can't move, my whole body hurts, chillbains everywhere and some days I can't move or get out of bed.

Then people tell me Raynauds means you just get a bit cold. No it really isn't.

So that's what I hate most.

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I hate it when your really excited to do something maybe a day out or a trip but then raynauds strikes and you spend the day hurting so much and being unable to sort it out. It ruins the thing you had been looking forward to so much.

Or when you have to plan you life around the weather forecast. People just really don't understand at all especially in the current heat wave, I like many many of you am still suffering just different triggers than the winter months.

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Yes I know what you mean, the other day I had a ice coffee from star bucks, that triggered me, the next day I was hurting a lot :/

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Hi. The thing I hate the most is poor bowel control so that to walk or even just stand up at times can be distressing and embarrassing. However I look normal and I cannot really tell people why I am so immobile so I think people must think me a fraud!

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I have raynards it got so bad my toes went black. I take blood pressure tablets which help. Took a whole to fond the right dose. I now take 10mg of Nifedipine MR once a day but can take it twice a day if I need too.

For me the worst part is the joint pain. I'm a dressage rider/trainer and it makes riding (and the rest of what needs doing as a horse owner) quite difficult at times. They (Riding for the Disabled) were even looking into if I qualify to compete as a Para Rider. I ride a level most healthy people struggle to get let along someone in constant pain!

I just want to feel normal!

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I'd be interested to hear if you qualify for paras :)

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I have lost a finger with gangrene due to Raynauds. Mine is a bit stupid as I only get it in my right hand (and of course I'm right handed!) The worst part is the phantom pain-I feel as though someone is sticking a toothpick under the nail that is no longer there!! I up my Nifedipine to three times a day in the cold months and twice daily other times. Some days I just get up and then turn around and go back to bed. If I tell

people I don't feel well that look at me and say "You don't look sick" and my good budy who walks with me when I can always tells me I'm the healthiest looking sick person she knows!

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Hi from what ive found out Raynauds does far more than fingers/toes as quacks seem to chunter on about! as RSA said any part of the body used to get it bad in my back/lungs if a slight chill having breathing problems been to hospital as they thought clot both times come back poz for DVT in tests doc there thinks something like raynauds causing result keep bringing up yellow bits in morning as it's come back but also getting tired seems to influence that as had few days just at home seems better plus if get too tired get immense headache like it's being squashed!

Trying to get quacks to refer me to Royal Free clinic but like always dragging there feet and just want to send me elsewhere saying they will have to redo tests blah blah blah yet any that ive had are old/out of date as already had that at clinic dealing with spine problems said no nerve root impingement etc & nothing here or there etc.to which is said yes there is nerve root&by laminar.to which she gave a splutter! i said had a full spine mri@queen square as thought have MS(have lot's of loss of feelings like hands etc)

she said we will have to get newer one's which found have issues in my neck as lost curve there and narrowing.

There's another person had similar with breathing to me having clot result so not alone so Raynauds is quite a large can of worms! not to be under estimated as it's blood which goes everywhere & probably why have issues with stomach they found not emptying properly to do endoscopy tests

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Hello Louise96becky. Try not to worry too much about getting non sufferers of Raynaud's to understand your pain. I realised ages ago that it is impossible for others to understand Raynaud's and other autoimmune disorders and the impact it has on my life. It is hard to explain and some will regard us as moaners who need to just get over ourselves.

Before I was diagnosed I used to think I just happened to be one of those mortals who happens to feel a bit colder than others and that was that.

On the hottest day so far this summer my feet and hands were like blocks of ice. At the same time my face was dripping with sweat due to my body's inability to regulate it's own temperature.

It is called "Raynaud's Phenomenon" for good reasons for this disorder is truly a "Phenomenon", very complex.

The only thing to do is to take the very best care of yourself, keep as warm as possible, rest as much as you need to and try not to get stressed because this will make things worse.

This is a very troublesome condition which can really get a person down, especially when all you want is to wake up now and then feeling well and rearing to go but cannot.

It really doesn't help when the people around you are unable to offer support. I don't think people are deliberately uncaring or unsympathetic, they just cannot imagine how you feel.

What I do from time to time is, if I find someone is interested to know more about Raynaud's, I point them in the direction of the RSA website and this wonderful forum.

Everyone, be good and kind to yourselves. Try to enjoy the warmth of the summer as much as possible. in whichever way you can. Give yourselves permission to enjoy even doing nothing and have some duvet days when possible.

I wish you all the best.

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Ive a bit of a mixed bag these days!

Having Fibro im often too hot if anywhere warm/clammy like walk into a warm shop &im like ice cubes please! as cooking.

With Asperger's i don't feel the cold as a process thing yet can be freezing cold when touched even be outside in a t shirt where others are 5 coats hats full works yet im ok?

But Raynauds if there is a draft/chill like when go to restaurant by me they have extractor as cook over charcoal i sit near it and radiator but it's pulling cold air through gap in door im sitting there coat on and chilled feel it in my back almost cuddling radiator yet cant get warm&feel ill.

One thing ive found i like a lot which found as end of range on flea bay cheap is an ex evans blouse it's chiffon so quite sheer got a couple now as liked first one so much long sleeve is great for when cold other is held up half sleeve you can drop if cold just find them so comfy to wear keeps me warm yet cool where as cotton T shirts often leave me feeling clammy as like jeans hold cold/damp.

Im past what anyone thinks but can't find anything male like it!

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We don't understand what is going on so how could others understand. The more you tell people what you have got and try to explain the sooner they will get the message.

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luckily for me l just go white with the feeling of cold with not too much pain and tingling but unluckily for me l get it whole skin and in every organ. What as to be the 'it's getting a bit grindingly old hat is' BUT YOU LOOK WELL!

When l have an 'event' i.e. my circulation shuts off a part of my body, one of the signs is that my raynauds phenomina comes on and to what degree is dependant upon the severity of the attack. SO! people watch me every time l do something? Therfore a close second is people watching me!

Third is YOU SHOULDN'T BE DOING THAT! ahahahaahahah!

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The short answer would be not being me any more and the unpredictability of it. You can't plan anything, you live your life one hour at a time and the worst of all is the look of disappointment on my children's faces when I say I can't go out with them because I am in so much pain 😢

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That's awful :/ I don't have any children but I can't imagine how you feel....

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People's ignorance. Having ingrown toenail removed on right toe completely, last year, had left bigtoenail was partially removed over years five times. Numbness in hands so constantly injuring them cut my finger today ended up in minor injury unit to have it redressed felt embarrassed. People commenting that I am dressed as if for the arctic it's because for me at the moment it is really cold.

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