Empower yourself

[Denny57]

Hello, I find this site helps in being able to express myself with concerns that I have with people that have an understanding of the daily battle that we all face living with Scleroderma.

Recently went for blood results and results showing low iron and vitamin D. I tried to explain that iron tablets would add to an ongoing problem of constipation, eat greens and red meat I was told, I must have been in the doctors for less than 5 minutes as I gave my GP a booklet on Information on Annual Tests For Scleroderma and would suggest that others follow suit if your GP is lacking in knowledge about Scleroderma.

I have said in recent posts that self help is needed, gentle exercise when your body allows, change of diet, change of lifestyle and trying to manage pain and look after your mental health as it’s all very testing.

Your can request a booklet from SRUK, free of charge you just pay for postage about £3 and you get two.

Desperately trying to strengthen my legs as there just doesn’t seem to be anything that helps, managed to strengthen my arms by daily band exercises so that’s a positive.

Had a week of stomach pain and it’s my belief that it’s all to do with the constipation, currently eating three very small meals a day and yesterday was the first pain free day, replacing tea with water and eating vegetables, fish and small amounts of red meat.

Start of a new academic year for me next week and I’m dreading it as my mind is willing but my body is somewhere else.

[GGhere]

Hi Denny57. I can identify with everything you say Two GPs at my surgery on different occasions told me they'd not seen scleroderma before and knew nothing about it. On a recent visit I was told to see the Nurse Practitioner rather then a GP. I asked her if she knew about scleroderma and all I got was a plain "no". Re your uncomfortable stomach: I was desperate a few weeks ago I felt so sick, my insides felt very sore and I hadn't eaten much for about three days. I tried to see a GP but was told there were no appointments at the moment - on whim and because I just felt I had to do something, I decided to try gluten-free bread. It was like flicking a switch: no more stomach ache which I used to get almost every other day. Then I did a bit of reading about scleroderma and found that as the disease attacks internal soft tissue it is quite common for people with scleroderma to develop a gluten intolerance. I've now gone totally gluten free - it's a bit limiting diet-wise but I found it makes such a difference. I now use GF pasta, biscuits, cereals - I really dislike the bread so buy Nairn Oatcakes and Nairn crackers instead of bread. The down side is the cost - but I've decided in for a penny in for a pound - it's better than feeling sick all day and having to cancel outings etc. Eating out is a problem but I manage by taking a GF snack in my bag. I think just swapping, bread, cereal, pasta is a big help in reducing gluten intake.

I hope you feel better soon and I think you are doing such a lot to help yourself with the arm and leg exercises.

I feel frustrated that the GPs and Practice Nurse don't know about my disease - they're not much help at all. When they tell me they know nothing about it I feel like yelling at them. "well bloody Google it then." But of course I don't dare.

[Denny57 in reply to GGhere]

Hi Betsie,

Thank you for your reply, I have taken a photo of the back of the booklet, see what you think.

[tall-tim]

Like you, I have cut out tea (brown, green, Indian, Chinese, etc ) and coffee from my diet, and it has helped reduce inflammation. It might be the tannin in them rather than the caffeine, as black chocolate does not seem to cause the same adverse effects.