As of yesterday I was confirmed as suffering from fibromyalgia as well as lupus. I have been off work for over two months and now have to come to terms with the fact my current job (the best job I've ever had) is too physical for me. Not sure what the future holds. But I'm still determined to work to support my family. At the moment I'm still holding out hope that someone will take me on even with my limitations, but I'm sure it would be easier if I had something invaluable to give in return.
With that in mind is there any support out there for someone with this condition to retrain?
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Dan30cr
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I feel for you as I am in the same boat except I was diagnosed 1 year ago with both. Have reduced my hours to 10 a week in the hope that I will get better but 1 year later I am still the same with a lot of meds. The Rheumy says that it takes time to get the right combination of meds so I am still positive that it will work for me. Stay strong and don't let Lupus define who you are.
You should make an appointment with the Disability Employment Adviser (DEA) at your local Jobcentre Plus. They can help you with retraining, seeking appropriate roles and practical support to get you back into work.
You can find more information about this in our booklet, 'I Want to Work - A self help guide for people with lupus' which you can read and download at lupusuk.org.uk/working-with...
I listen to a friend of mine yesterday, describe how he did not know that he had muscular dystrophy until much later in his life. And it turned out much better for him because if he had known that he had MD he probably would not have tried most of the things that he tried he would've limited himself.
I was thinking about that last night I have lupus and a bunch other stuff but I didn't get diagnosed until I was 51 and I probably would've done the same thing because of limited myself this last year taking care of myself.
Maybe were supposed to live as fully as we can that worrying about what diseases we have. I mean using common sense, but still do the things that we want to do because nothing is promised to us it may not be the lupus that does it in for us it might be you get hit by a bus.
I hope this doesn't sound morbid but I know in the last year I've gotten worse and I wonder if it's because in my mind I've been aware that I'm sick or if it's just coincided I don't know.
I find that meditation, massages, and anything to reduce stress helps, but then I decided to move and it took three different deposits on three different houses before I finally was able to move into someplace and I was the one who did all the packing not my husband and I'm the one doing all the unpacking and this incredibly stressful no matter how Much I want to stress to be gone LOL
Well you seem to be handling it very well. I find it hard to motivate myself because of the constant pain but I'm still determined. I do need to look into more methods to de-stress. I hear yoga is good for that and also promotes flexibility and physical fitness.
Hi Dan. I'm sorry to hear about all what must be a very unwelcome diagnosis. Fibro seems to be very common in those with Lupus. My GP thinks I have it, too. I have had very good results with something called Bowen Therapy (which you can find more about, if you are interested, via Google) having been told about it by another Fibro patient who tried it. I'm also pasting a link to Action for M.E.s website, which has a useful section on employment (you may be aware that ME/CFS and Fibro have a lot of similarities and some researchers/medics consider them to be two ends of a single 'scale' of illness, whilst others see them as parallel conditions) which may be of some use.
Dan Etsy al, I found a free app called chill that helps me to remember to relax 3-4 times a day. It sends lil. Gongs w reminders to breathe giggle. It helps though
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Working with SLE
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I made it to Monday! Thank you everyone!
