How do you cope

I was diagnosed with Secondary Raynaud's last February and ever since then I have been backwards and forwards to hospital, felt like a pin cushion with ever visit resulting in blood test ect. The hospital still don't know what's causing it or the underlying cause. Trying different drugs to try and calm it down. I've now been off work for 2.5 months and was given a doctors note for 2 more months. How do folks cope as I work as a windscreen fitter working out side in all weathers, the worrying thing is when the sensation goes and there is no feeling in the fingers and I accidently cut myself due to working with glass and sharp blades. I'm now bored as can't go out for fear of triggering an attack.

13 Replies

  • Tbh if I were you I'd consider a career change if at all possible. I'm not able to work anymore so do bits for charity as and when I can.

    Life's a struggle but adapting has benefits for your sanity. trying to carry on in a job that triggers attacks will wear u down physically, and more importantly, mentally.

    There's lots we can do with this illness, but our strengths come from learning our limitations. At least, that's what keeps me sane.

    Good luck :)

  • I have started volunteering as a befriender so that'll keep me sane and warm lol. Time will tell how I deal with this but suppose this is the next chapter of my life going forward.

  • Yep, just keep in mind it doesn't have to be a bad thing. Yes, we're easily knocked for six but at the same time it can open up a whole new perspective and life path. I'm actually the happiest I've ever been and I know it's possible to lead a fulfilling life even with these crappy illnesses.

  • Thank you for the encouraging us to be on the brightside i developed an ulcer on my finger in august so painfull iam a sculptor haven't been to my studio in so long it's gotten the best of me I go up and down trying to cope my whole hand is so uncomfortable I wear gloves with the fingers cut off and I moisturize quite a bit I also take Nifedipine ER tabs for the pins and needle pain also when I walk I get cramps in my feet so I haven't walked much like I use to I guess this my rant well on the good note went outside and did a one hand job of working in the garden getting ready to plant some beans and greens there was a present some arugula, miner lettuce, chickweed dandelion greens made a salad another thing I've been doing more to stay warm is drink ginger tea with local honey feels really good and reading a bit more found a fabulous book at the thrift store gardening at the dragon's gate by Wendy Johnson it's 3am I shall try and get some sleep and keep moving forward namast'e

  • Nice to read you're staying positive. Have a stunning day. namast'e

  • Hi

    I can empathise with you as you work out of doors, I have had Raynauds for over 30 years and then 2 yrs ago it became secondary as I received a diagnosis of limited systemic sclerosis. I too work out of doors as a dairy farmer and know that fear once your fingers and hands have 'gone'. Over the years I have had horrendous problems with chaps and splits and a long term ulcer on my index finger which gives me constant pain and then I am very clumsy as I am trying to avoid banging it. In my case much of my work I am able to do with gloves on (different sorts for different jobs - waterproof thin ones for bottle feeding calves, thicker less waterproof ones for general farmyard duties, ski gloves for breaking ice on water troughs etc.) My work rarely requires great dexterity for more than a few minutes at a time whereas for your job you need much more agile fingers. I have found that prescribed sildenafil has helped a lot and I have also had iloprost but I still do get bad attacks. Try and keep your core temperature warm and wear wrist warmers and a woolly hat. Have warm gloves available, keep some in your van and also some other means of warming your hands - one of those warming pads for example. and make sure you always have a hot drink in your flask. SRUK sell some very thin silver lined gloves which perhaps you could wear under some disposable surgical gloves. Most importantly, as soon as you feel an attack starting, try and get to a source of heat, before they have shut down completely. I appreciate if you get back to work it might not always be possible if you are half way through fitting a windscreen to just 'drop everything' to have a 5 minute warmer!

    I hope they manage to sort something out that works for you or perhaps at work a slight change of direction so you are not in the cold so much especially in the winter. I am in at present as I have a load of paperwork to get through and I pace myself over the day with a mix of indoor and outdoor jobs. Coming on here helps - at least you know you are not alone.

    Have you worked with pressure washers /drills or anything else in the past that could have caused vibration white finger?

  • Hi Cowhide, I haven't worked with any vibrations tools at all, work asked the same question too. We're all at a loss how to move forward. I have worn gloves and most of the time, I can feel the fingers going through them. My partner and I went out last night for a walk and within moments my toes seemed to start, that has been happening for the past few days with the toes I mean. There seems to be new things happening all the time. This morning I went to hospital and when I came back I saw in the mirror the tip of my nose had a red sore line between the two nostrils, can't remember scratching it and haven't got a cold so I thinks its another extremity affecting me. Will solider on and see we this takes me.

  • Hi Cowhide, I have a quiestion for you. You said you had Raynauds for over 30 years, in those years was it primary? I was diagnosed with primary raynauds two years ago and I´m worry it may become secondary. I have some complications with my esophagus but nothing serious. Also I was told that my capillaries are a bit altered. Did you have any of those symptoms before being diagnosed with limited systemic sclerosis?

    Thanks in advance.

  • Hello Fiorella

    I assume it was primary as at the time I wasn't aware of any other issues. From a medical perspective I think I was just told 'oh you have Raynauds' and other than trying some pills that gave me headaches so I gave up, there was no other intervention, I just lived with it as do thousands of others, they didn't look at capillaries.

    But yes although I was only diagnosed with scleroderma in 2015, with hindsight I had other symptoms for years. I developed oesophageal reflux in the early 1990's which has got progressively worse and also started getting swallowing problems about 5 years ago. I have particularly bad circulation in one finger that was crushed by a cow around 1990 and have had what I now know is small areas of calcinosis on the tip for probably 20 years - I get them elsewhere too now. And I've had telangiectasia for probably 10 years although had always just put that down to poor complexion. My fingers have always been puffy and my skin has always been 'thick' although not tight (until recently). So perhaps my Raynauds was secondary all along. I am now 50.

    Just keep a careful eye on your symptoms, make yourself aware of the symptoms of other diseases where Raynauds may be secondary and talk to your GP if you have any concerns about wider auto-immune involvement. Many many people have Raynauds and never any related issues. Remember that oesophagitis is also very common and both can be stand-alone conditions.

  • Thanks so much for your answer and I wish you the best of luck.

  • Hi avtargill31

    sorry to hear life is so difficult for you. Main thing you must do is try not to get depressed. It would be a good idea to consider finding work where you can stay indoors especially in the cold months. They (the experts) also advise exercise can help. Wrap up warm, gloves, hat, etc and try taking a good walk to help your circulation - you'll be surprised how it will lift your spirits too. Have you considered a gentle exercise class like tai chi or pilates. I've had Raynaud's for years and in recent times developed systemic sclerosis, scleroderma, sjogrens syndrome, rheumatoid arthritis - in fact the whole caboodle. I understand that people with Raynaud's have a propensity to develop all these other things. I'm 76 and suspect you are somewhat younger and still of working age - make your mind up that Raynaud's is not going to beat you. I'm lucky as I don't have to worry about coping with work any more and on a bad day I can get on the sofa with a blanket and the telly. I can understand your disappointment and frustration and of the course the need to work. I wish you well and hope that you can improve your quality of life. I tell myself I've got this far with all the horrible symptoms and I intend to make it to 86 or even 96 if I'm extra lucky.

  • Hi Betsie, I'm not getting depressed as such, just super bored. Never tried exercise as my job kept me fit ish. I'm 44 and this came on last feb. Only time will tell where we go from here but enquiring about volunteering etc. Will live the dream until I can't lol

  • Hi again avtargill31. So glad you told me you're not depressed - I know what you mean about the boredom as this horrible afflictions seems to narrow your world - I go crazy with boredom and don't want to spend my life on the sofa watching telly. I enjoy attending an art class and writers' group - loads of interesting chat. However, I bore my family to death with my rubbish drawings, paintings and scribblings. But what the hell. I think we'll all be a bit happier when the warm weather arrives - fingers crossed it gets here soon.

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