How long do you stay off work with Scleroderma/Polymyositis?

I was diagnosed with Scleroderma/Polymyositis overlap last May. I believe it first started in 2008 but I just thought it was fatigue from working too much but when I had less work I got even more fatigued. My family doctor could not diagnose the leg pains and weakness I had and so it was only when I was having an operation for Carpel tunnel syndrome and I explained to the surgeon some of my symptoms that he referred me to a rheumatologist.

I have not been working since last March when I had my operation.

I have more strength but the fatigue is still there. I can go for about an hour and then I need a break. I work in a shop and have to stand all day. Normally we cannot sit down. How long have others had to stay off work? I keep looking for other work but in this climate there is nothing suitable.

I also have some heart weakness and carrying heavy items causes me to get breathless and I feel so weak and must sit down.

I try to walk for at least an hour every day and write my exercise bike at home.

How long have others needed to get back to normal health, or does it never happen?

Irene

14 Replies

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  • I do not have polymyositis, I have scleroderma limited. I have worked until I was 72 by doing what I can. I am very bad at not working or being busy, because then I feel all my problems which I forget when I am busy. So I cannot speak for you. We are different.

  • That's true. Actually, I have diffuse cutaneous systemic sclerosis. That is the official name.

    I feel a lot better than I used to, it is mainly the fatigue and feelings of weakness that are the worst. I also like to keep busy but often things just seem too much.

    Thanks for answering.

  • Hi Irene, I have Limited Scleroderma and other auto immune diseases. I had severe chronic fatique back in 2006 which my consultant said is associated with the condition/s ... I was off work for a year and finally in 2007 they retired me on ill health grounds and I have not worked since. When I had the fatique at its worse I cud not even get out of bed, my husband had to help me go to the bathroom and help me with lots of other things. When he wasnt around the most I could do was to get down on all fours and crawl... I had just to lay down all the time and my body ached from head to foot similar to flu like symptoms. I still cannot do much and if I am going anywhere I have to make sure I rest the day before to conserve some energy. Do I miss work !!!!! NO .... Take care and make sure you rest when you can

  • I am a it confused by your posting. You have the energy to walk for an hour every day and to use your exercise bike regularly, but not to work at your job. I appreciate that standing fore long periods is exhausting - have you asked your employer to provide a stool for you to sit on when you feel tired? You might like to ask your GP to write to your employer on your behalf.

    Everyone is different, but scleroderma does make you feel more fatigued, and that is unlikely to disappear, or for you to recover and feel the way you felt before you became ill. Working full time is a relatively heavy load. Can you afford to go down to 3 days per week? I did and found it made an enormous difference.

    To still be on sick leave nearly a year after a small operation for capel tunnel syndrome makes it sound like you aren't actually that keen to return to your previous job. Is there something you are interested in that you could do from home - a craft-based enterprise, or something that you are already skilled in? Think about what you're gaining froom staying off work, and what you might gain from going back - weighing up your choices could help you to come to a positive decision to move on with life with scleroderma one way or another, rather than waiting in limbo for things to change.

    Best wishes for the future.

  • Actually, I am not off work because of the carpal tunnel operation. That was just one thing among many. Several months before I had that operation I was almost crippled every day at work. We are not allowed to sit down at all, and by the end of each day I could hardly walk. I even fell down in the street one day. I knew something was wrong but the doctor only told me to take painkillers. I knew I should not have been working at that time but I was just hanging on every day because I thought if I had a few weeks off after the operation I would get better.

    In fact every day I got worse and I was lucky that the surgeon referred me to a rheumatologist. He diagnosed Scleroderma/Polymyositis. By then even to pick up a cup was hard.

    I need to go back to work but must do at least 30 hours or I can hardly afford to even buy food after paying bills. I live on my own so must think about this.

    As for somewhere to sit at work, I asked about it but the answer I got on one occasion was,"we do not provide chairs" and another time I talked about needing somewhere to sit I got no answer at all. I know that they must provide me with somewhere to sit. I have even offered to supply my own. Still no answer.

    I hope to be well enough soon to go back to work and then I will talk seriously about the subject.

    Thanks for the best wishes and mine for you.

  • Hi Irene

    have you worked for your employer in excess of 12months? If so, your statutory rights kick in and your employer owes you a duty of care to ensure that the workplace meets your health / disability needs as by the Disability discrimination Act now replaced by The Equalities Act 2010. (i am also assuming that your employer has more than 10 employees).

    You should be able to find out more info on this via Google or your local citizens advice bureau.

    I fought and fought to stay in work but eventually the physical demands of living this dream with a very aggressive form of diffuse systemic scelrosis and Raynuads thrown in, put a halt to my 60hour a week practising as a barrister around various crown courts !

    That was 7 years ago and I still beat myself up that I can not go to work - sunday nights are a big challenge ! I sometimes wish that I had spent all those years partying, eating pot noodle and watching Jeremy Kyle instead of studying and more studying to then qualify and after a few years of runnning around like a hamster in a manic wheel to then physically collapse !

    But it is all good ! and I know that all is well in my world - as by Louise Hay, my heroine ! Her book you can heal your life helped me as indeed listening to the free online radio station - hayhouseradio.com - radio for the soul ! helps me monitor my thoughts on my physical health challenge !

    I hope this helps you also, and anyone else reading this :)

  • Hello living-the-dream-ssc-ray - I am so sorry that you've had to abandon your career as a barrister, but as you know, and as I'm sure Louise Hay would agree, if it hadn't happened you would not be on this site and able to use your knowledge to advise Irene55 of her rights.

    I can empathise with your loss of career to a certain extent as late in life I put myself through a part-time evening LLB - it nearly killed me (I was so exhausted all the time and my day job suffered quite a bit) but I wanted to do something more challenging. I am lucky(?) in that I get to use my degree some of the time as I work within a property department and handle some of the leases (hence the question mark after 'lucky' - it is most definitely not the area of law I'd have chosen to work in!).

    I read one of Louise Hay's books a long time ago and she is good: I didn't know about her radio station and am definitely going to give it a try.

    Best wishes

    BarbJ

  • Actually, my firm owns over 200 stores and so they definitely have more than 10 employees. There are more than that where I work.

    I think they are just hoping that I don't need anywhere to sit. Because that might make other people ask. For instance, we had a couple of girls working who were pregnant and they were not allowed anywhere to sit either. But there is a new manager now so she may think differently. Ultimately, the decision is not hers to make.

    My firm is not really sympathetic to the employees needs, only officially but not actually. They wrote to me last year asking for my doctor's details but I never had an acknowledgement. That is how they see their responsibility to the staff.

    If I could find another job I would but it is not very easy at the moment and I would rather hang on to this job than have none. Whether I can continue once I go back is another matter.

    I have diffuse cutaneous systemic sclerosis and thought I was getting better but lately have had a lot of pain in my feet and stiffness in my legs again. I can't really blame the cold because the weather has been very mild, almost like spring.

    Thank you for your concern and I will look at that website you mention.

  • Hello Irene 55 - I have Scleroderma spectrum disorder (with some lung fibrosis and digestive problems), plus Raynauds. I was first diagnosed with Mixed Connective Tissue Disease in 1998 and a lot of the time was exhausted by my job. I organised training and as well as all the admin work I had to arrange furniture in the rooms and serve drinks and lunches - although not every day. Before that I'd done shop work and I know exactly what you mean about not being able to stand up all day. In any case there's a world of difference between spending all day on your feet working and the freedom of taking an hour's walk at a pace that suits you and without any pressure on you.

    I was lucky enough to change my job not long after I was diagnosed and spend most of my days sitting down now, but am still pretty much worn out by the end of the week. I am 56 soon and I too live alone. I am hoping to cut my hours down at some point - I'd be doing it sooner if I didn't work in the public sector with an uncertain future! Am not complaining too much though as, where I live, public sector wages are just about the best paid ones you can get.

    In the meantime though, I hope that you're going to follow up living-the-dream-ssc-ray's advice as your employer needs to take steps to help you - it may be moving you to a different job within the organisation, or it may be sorting out a way for you to sit down and do your job ... but do it they must. I have seen somewhere on this site a lady who has been registered disabled because of her Scleroderma - might be an avenue worth exploring??

    Also, I second living-the-dream-ssc-ray's recommendation of Louise Hay's books - didn't know she had a radio station, will give it a go myself!

    Good luck with your employer, please come back and let us know how you get on.

  • We are almost the same age then, as I am also 56 soon, in March. Sitting down and talking to other people wears me out. So I know that I am not fit enough for work yet. This is the first time in my life I have been off work sick.

    When I do housework I find that I need to sit down for a while in the middle and if I am ironing clothes after about an hour I feel weak and shaky. It is a very strange feeling.

    But anyway, I am better than I was at this time last year. I am just taking it one day at a time.

    Thanks for your reply.

  • Within a year of diagnosis, I was medically disabled with the scleroderma and pulmonary arterial hypertension. Social Security approved me for disability in 24 days. I have not worked since July 29, 2011 and as my pulmonary hypertension is progressing, I will never work again.

  • Hi Irene55, I was just reading a post of yours from 2 years ago.

    Reading through what you said then is an EXACT scenario of my situation now. E.G. Unable to work, extreme fatigue syndrome. My employers said that ' our duty of care policy dictates that because of your obvious health problems, we recommend that you see your doctor and do not return to work until your health is restored.'

    That was 3 years ago, and I know now that I'm unlikely to work again....at least physically, I tend to use my brain power nowadays. I have readapted to life accordingly.

    Because your symptoms described so closely my symptoms now....may I ask you how you now feel 2 years down the line? For me the fatigue is the worst aspect of all this. Take care.

  • I worked for 2012 to 2013 and stopped work this March because I moved. I feel that some of my original symptoms are coming back. I am also very fatigued a lot of the time. I have an appointment in 2 weeks with my rheumatologist and have made a list to take.

    It is not so easy to stay unemployed because they do not accept fatigue as a reason not to work but I am looking for a job in an office which will be easier than my last job.

    I find if I rest for a day then the next day I am OK. The fatigue is the biggest problem I find. People think it is just normal tiredness but it is not.

    I wish you the best with your health.

  • Thank you for your kind reply. Take care.

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