Scleroderma & Raynaud's UK (SRUK)
6,793 members3,213 posts

Work, side effects & fatigue

Hey everyone - happy Friday :)

I just wanted to share that I have the best employers in the world - I've kept them informed and called a meeting with them last week about my diagnosis and immunosuppressant etc. They were so awesome - ordered me a fleece for the office, suggested those expensive gloves for winter, moving my desk somewhere warmer, advised some tasks like arguing with subcontractors is done by someone else so I'm not stressed, said if site work is too tough they can always use me in head office, said I'm an inspiration and they're overwhelmed by how strong I am and that they know I'm a fighter, etc. Amazing. Basically nothing is too much hassle. Fatigued? Work from home, here's a laptop take it everywhere with you. Cold? We'll buy you more clothing, move your desk, get you an individual heater. it's old school - it's how employment ought to be. And it's only grown stronger a loyalty in me :) love them so much.

Started the mycophenolate! No side effects! (Other than a random taste of blood in my mouth every so often?!) yey! I half expected to be struck down with something immediately >_< just waiting for some benefits to kick in now :)

Fatigue update: almost tipped myself into one of those severe episodes the other day with working full time and a lot of house stress (insurance builders work from a broken toilet) wedding planning and a high volume phase in training, but d-ribose saved the day again. Still going to squat for reps grumbling and arguing and then finding it surprisingly easy. Creatine starting to kick in now and recoveries are improving :) hope you've tried it and are finding yourselves with more energy now?

6 Replies

They sound like really great employers! I'm still trying to figure out what to tell people in work or even how to tell them! We've had a change in boss over the summer as well.


Hi Bear, Was planning to write to you tonight then I saw your latest post. How great to have such good employers, but it must be because of who you are too. Ones attitude makes a huge difference here. My husband and I had our own business for many years and I worked in my father's business before that and I know only too well why some people did better than others. Some people are a joy to employ and some are not.

I have been trying the D-ribose this week and I do think it is helping, but I am a bit sceptical that I want it to help and so it does - mind over matter. However, I worked in the garden for a couple of hours today for the first time in months and I am still moving around without too much difficulty. Usually my thighs are so starved and tired that I can hardly stand and tonight I am much better. Had to have a sleep this afternoon but that is usual anyway. Only bought the D-Ribose for a start and the 100g pottle will only last a couple more days then I think I will leave it for a week and see if I can notice a difference. Creatine is the next thing to add. See how we go.


That's so kind of you to say - I certainly hope they think a lot of me! Because I train I am out the door bang on 5 o'clock and even that everyone is totally supportive and they may even sponsor me when I am at international level (expected next year).

I know what you mean - I expected nothing different because I have trained like I'm dying for 2 years now I thought it was normal. Even now I am still moaning and complaining going into squats at the end of the session because I expect so much pain and ache even though I'm not getting it like I did. Can't reprogram your brain so soon - after 2 years of squats meaning suffering it's hard to expect anything else! Good luck in testing your psychological involvement - why don't you ask your husband to give you ribose on one day in a week without your knowledge and see if you can tell when it was? (Blind study?) good side effect of that is he'll have to make you a few drinks hehe




What a positive attitude you have.

I have Raynauds and Scleroderma, and after managing without any medication for a number of years, I finally gave in (if that's the right word) and agreed with my lung consultant that it would be advisable to take medication.

So in November 2011, I started on a combination of steroids and cyclophosphamide. Like you I was waiting for some of the awful side effects to start. Nothing seemed to happen, I continued to feel well. Then my hair started to come out, but its so thick anyway that you wouldn't even notice. It was mainly when I washed my hair that I noticed a small amount of hair loss. After a few months there was not so much hair loss, but then my hair stopped growing. When you consider some of the side effects that you could get, I decided that a small amount of hair loss is the better of all the evils.

Within 6 weeks of starting the medication it was reduced a bit, and each time I saw the consultant they reduced it down bit by bit. I was having regular lung function tests and CT scans, also I was closely monitored having weekly blood checks.

By August 2012 the cyclophosphamide dosage was half of what I was originally taking, and similar with the steroids.

By October 2012, my blood tests showed that everything was under control and I came off the cyclophosphamide altogether.

Now I take a very low dosage of steroids, and try to keep as fit as I can and have a healthy diet. I have my fleece and gloves handy in work for when people have windows open or when the temperature drops. Like you my work is very understanding and allow me time off for appointments.

I have always had the philosophy that my illness lives with me on my terms - I do not live with it!

All the best

Jane 18


Jane what a good attitude you have too :) the one thing in life you can control is your perception :)

I'm so glad you weaned down and off some meds. That's good work!

I know we are lucky there are not all good employers out there!


Hi Bear,

I am thankful every day that I feel well, in a strange way I feel very lucky, I could be a lot worse.

I do as much as I can to stay healthy, I think its my way of having some control over my health.

We are coming into the difficult time of year for raynaud's with the advent of Autumn. Over the last month my hands have been looking almost respectable, but very soon my fingers will have splits and become painful. Someone had a window open in work yesterday making the office cold, and this morning when I woke up my finger was painful with a split.

I found a really good hand & cuticle scrub by 'Sanctuary Spa' which I use in the shower, then when I go to bed I use a heel cream (not a nice smell) on my fingers and put on a cotton glove whilst in bed. However come the depths of winter, very little seems to work, I just have to constantly keep using cortisone cream and plasters to try and give some comfort and protection for all the splits.

Stay warm.



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