Severe Raynaud's and Working

[dawn1972]

What types of jobs is anyone doing with severe Raynaud's all year around or is everyone applying for disability???

[MARCY]

I was diagnosed with Systemic Scleraderma after my Raynauds symptoms showed up and immediatley placed on disability. I was a Ex. Admin. Assist. for Ford Motor Mortgage Co. So when this hit, it hit hard and I couldn't stand anyone to touch my fingers, they hurt 0-10 (25)! They immediatley started to contract and within months was on hospice, waiting to die. Here I am 14 years later, but still contracted badly beyond anyone's imgination! I also live in a nursing home. So sice I don't have much family 2 daughters with kids of their own, I'm on my own and back on hospice! Don't be afraid of hospice, they are no longer for dying patients, they are here to help us live as comfortably and as long as we can!

[zenabb in reply to MARCY]

You obviously had it badly 14 years ago. Was not treated? Under control? I have never been on disability. I always worked but did not have it as bad as you 14 years ago.

[MARCY in reply to zenabb]

Yes, I diagnosed myself, then after 5 hospitals went with all the medical info I had collected from the library to a county hospital, it was confirmed and I became a test patient for the new Dr.'s and nurses. There wasn't anything they could offer besides prednizone and for 10 days. I was on liquid morphine and hydrocodone. Then lost mobility and place in a nursing home on hospice until 2003. I went into remission, but the damage was already done. After surgery in 2007 & 2009 it's back and I'm back on hospice, but it's not like I'm struggling, they have maintained my pain, gottten me off so much nausea, heartburn, intestinal and pain meds. All of which were creating blockages in my intestines. I take things one day at a time. But if you use your hands for work and it's getting too painful, you shouldn't stress out, because it will cause more flares! Disability isn't fun, but you will get treated, you will have a roof over your head and food. You will be treated with respect. Right now, the contractures you see are the begining of the disease, mine were so far gone...there is nothing they could do!

[Rp321]

I do a normal job, teaching assistant. Do you have just primary raynauds?

If you have just raynauds i dont see any reason why you wouldnt be able to do a normal job - obviousally you have to take extra care with gloves, temprature change etc but i dont think it impacts at all on my ability to work.

[MAMANUKES]

I am a Nuclear Medical Technologist. The office I work in is a cold as a meat locker! I requested & got small room heaters. By the way, my patient's love them. I wear multiple layers of clothing & joke about it, no problem it is what I do! I also wear either wristies or gloves pretty much all the time. When my hands get too cold or numb, And I can't inject my patients, I ask for help. It is amazing how happy people are to help you once they understand what you are going through!

[LynnCox]

I'm a medical secretary and although my Raynaud's is not severe enough for meds, last Winter we moved to a newly built hospital that had major heating issues and I struggled to do my job. This year I have silver gloves (both fingerless and with fingers) and have a better idea of how to survive. The consutlant I work for is a fresh air freak (even in Winter) but has shown willing to compromise a little.

[Emma2]

I am a lawyer and I keep a heater near my desk for when it gets cold. I keep a fleece in the office and I always have my gloves if I need them. I think I would really struggle with any job where I was cold - I think it's a really good thing for my hands that I'm office based!

[AdamS]

I am a postman, I have a very mild case because I don't feel any pain I just have the change in colour, I keep a pair of gloves in my pocket, also I have been put on to driving the last 4 years so I have a heater if I get too cold. This was just a fluke by the way I don't think people at work know I have Raynaurds

[KatyP]

I'm an administrator in a university so I have a nice warm office, with a heater under the desk tho' I still often use gloves in work.

Our Occ' Health people are great tho', and have said that should my hands get too bad to type, I can have voice-activated software.

I'm really very lucky here.

[living-the-dream-ssc-ray]

I had to cease full time employment 7 years ago- I am a barrister who used to be on the crazy manic hamster in the wheel syndrome! Scleroderma and severe Raynauds soon put a stop to me doing that ! I had to return to my home town to be nearer my family for support and have spent the last few years trying to rebuild my inner strength, (whilst I was working I was taking heavy doses of immunosuprressants and not eating so that I could minimise my gut activity - silly I know, but necessary at the time to work!), as well as, learning to live with the disability my body now displays!

I have tried to incorporate the skills which I have acquired during my working life, in that I am seen as a champion on disability in my local community - I sit on various local government groups (when Im able to go out) in relation to disability and I really do enjoy this type of interaction! The Equalities Act 2010 is here to stay !

Unfortunately Im not at a stable level that I can commit to full time or even part time employment as some days my energies are very low and the pain is overwhelming! I also signed up to be a voluntary education presenter on behalf of the RNLI (lifeboats) a few years ago, to test my physical stamina really, with me being in charge of my diary as well as there is no pressure if Im having a more than 'challenging day', I can cancel the appointment without any huge ramifications! I absolutely love giving the presentations to the children and although it saddens me that I am not able to do the job which had been my childhood dream, Im grateful that I have had experience of doing it, and now am doing something enjoyable as well as respecting the demands of my body ! It has taken me 5 long years to no longer feel that the rug was pulled under my feet and that my world had ended at the time of being diagnosed in 1997!

As everyday brings with it new challenges, in terms of pain, nausea, tiredness and of course a likening to an eskimo, thank goodness for the internet and living the dream with my little dog, who is more than happy to stay at home being warm and cosy. However one day (when symptoms are better controlled) I hope to start my own business, which of course will be home based (what a great age we live in to be able to work from home!) focussing on Justice and in particular disability and its many guises - raising the awareness

[sgbee in reply to living-the-dream-ssc-ray]

I too have turned to disability--after living through 6 years of scleroderma and raynauds, and learning to cope well and adapt, working in an office with heater and gloves, I developed sjogrens. Who knew it was more than dry eyes and dry mouth?

Pain in leg muscles and severe fatigue forced me to quit my office job, which I loved. 5 years later I am getting some strength back! YAY! I walk my little doggie around the neighborhood and feel a bit better. BUT like you I have days when I just can barely get out the door and have to control my schedule.

I also volunteer a bit in my community and hope to get healthy enough to work again someday. That is my goal.

[zenabb in reply to living-the-dream-ssc-ray]

It's hard to come to terms with isn't it. But I admire your spirit, it's the only way to get on with life. And while you are busy you are not thinking about your condition. It works for me but it must not be boring. Best wishes.

[Stacey13]

I work on the railway, I work on the buffet car/in first class. I'm ok in general although I've got to be pretty careful putting things in and out of fridges. The quick change of temperature can be enough to set my hands off. I always carry a pair of gloves in my bag - winter or summer - just in case. I also told the company about Raynauds when I had my initial medical. Best gloves to use at work are fingerless thinsulate fleecy ones with the mitten cap. They're really handy when I've got to stand on platforms interchanging trains etc.

[Whatever]

I am a customer receptionist.Up until March 2011 i was working full-time.I had to reduce my hours because of fatigue. I have Limited Sclero and Secondary Sjogrens.I am now job sharing.Computer work/money handling takes it toll on my joints. I work in a rather drafty large office. I work very early am shifts.

[LisaP]

I was diagnosed with secondary Raynauds about 6 years ago. Secondary to what?? I don't know and neither do the doctors, but that's what I was told. I have been waiting for 6 years to develop more symptoms. I am happy that it seems to be taking it's old sweet time!

I work in an office. I don't usually have any problem doing my job, but I do have a small heater under my desk and gloves and a sweater that I keep with me at all times. Even in the summer I find I need them if the A/C is on too high. Now that it's getting colder (it's 23 degrees here) I find I am using them more and more.

[msdeedee]

After being diagnosed with Raynaud's and scleroderma I was told that I may not be able to work but i tried to continue I worked as a medical asst as well as customer service. One day after being in agonizing pain from being in the air condition I left work straight to my RA's office. On the verge of amputation to one of my fingers. I never went back to work. So ended up on disability. Which was hard hit for single mother with three kids. It took two years. I want to work my Raynaud's is so severe that I can not.

[asilva80]

i'm a mechanic on motorcycles but moved to service writing. I still work on motorcycles more often than I should. my raynauds is not that bad but it does hurt to do things. I feel more pain driving and when I'm typing and resting my hands on the desk. working on motorcycles is something that I love doing and I'm good at. I do pay the price at night and the next day lately I've been getting tired and sleep seems to do nothing for me. I had gangrene on one of my finger and two other loose circulation. I know I should stop but then what will I do. dr are not free and mine is 5 hours away. for now I'll keep truckin at least try to.