Scleroderma & Raynaud's UK (SRUK)
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Hi I have only been told in September last year that I have limited cutaneous systemic sclerosis.don't feel good carnt go toilet or sud I say go four to five times a day to empty bowels like rabbit droppings the tablet they gave me make me feet swell don't feel Hungary at all just fed up up now as any one got any advice . heart keeps going like butterfly's don't sleep but feel tired all the time I also have Raynaud's and carpil tunnel soz about spelling hope someone can help

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My sympathies to you, Diane. I have tried to avoid drug treatment, as I want to know what the disease *is* and feels like and don't want to be sapped and demoralised with side effects. At least the illness is 'me' but the drugs aren't. You haven't said which drugs you are on. I only take Sildenafil for the Raynaud's, and that has no appreciable side effects. Paying attention to diet can help with 'rabbit droppings' (make sure lots of fruit & veg & lentils, and less meat protein and refined carbs); I understand that sometimes the drugs may cause this side effect.


Hi I am on one aspirin 75 mg a day and one simvastain a day 40 mg I don't like taking tablets of any kind never have I can't remember the other tablets but I will not take them anymore. I had a funny turn in august pins n needles down right arm in cheek and numb lips that's how it all started don't feel good at all now and prescription are to expensive thanks di


I have the same as you, i.e. it is my digestive system that is affected. It is slow and I am constipated. It is a question of finding yourself how to make it work as well as possible. I take senna and sometimes have to have an enema. It is not easy.

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I have problems with my gullet which stops working every so often which makes me feel exhausted and no energy and bloated, the other side of the coin my lower intestines tend to be overactive and if I don't take my codeine phospate I am never off the toilet. I have found that changing my eating habits have meant that I can cut down on my tablets. I also have low blood pressure but still need to take my sildenafil and my esomeprale, without these I don't think I would be leaving the house and functioning as a mum and grandmother. I also get very breathless with my pulmonary hypertension but I have found that exercise in a gym helps, I can do more things inside than I can do out. I certainly have a lot of problems trying to walk very far if I am outside but can manage nearly a mile on the treadmill.


Hi as far as constipation is concerned I drink a glass of prune juice every day which really helps.


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