A bit of vindication!

[uknlv]

Well I was having a chat with my connective tissue nurse yesterday, and got some news that made me very happy. I was asking about my referral to Podiatry, because I have such terrible pain in my feet these days and it is very difficult to get around at all anymore. She told me that I have calcification in my feet, so there should be no problem with getting a referral to Podiatry. Well you would thing that this news would be uspetting, just one more thing to chalk up to the Scleroderma, but no I was happy to get it! At my last visit to the doctors I was told that all my pains and cramps in my feet and all over my body, were not caused by the Sceroderma, although they had no idea what was causing it, maybe it was due to me weight or age. Well now they have proof that, in the case of my feet, that it is due to the Scleroderma! So I am hoping that they will finally start treating my pains and other issues, instead of looking for excuses to not due anything.

[Anteater]

Yes, why dont they listen to us - it seems sometimes it goes in one ear and out the other - we really have to keep on till they LISTEN !!!! God Luck you got there in the end xx

[Emma2]

I hope you get a bit of relief soon and some treatment to help. At least you do seem to be getting somewhere.

[Yorky]

My feet are a nightmare, just so cold and achy. I am surprised that you haven't been referred to podiatry before. I have been attending the hospital in Leeds for many years, the treatment, help and expertise are second to none. However I have now been informed that the new podiatrist is going to write to my GP asking him to refer me to a community podiatrist in my own area, I am not happy. There is a lot of research going on into the feet and scleroderma at Leeds, I have been involved in two studies, there is no doubt in the connection between the two.

[uknlv]

Yes, it was because of going on a couple Podiatry trial studies that they discovered the calcification in my feet. If I hadn't done that they still would be saying it was nothing to do with my condition. At the time I was told this I queried if foot problems are not part of the Scleroderma, why are they running these trials. I got no answer.

I think the doctors are great, but I do not like getting the Junior Doctors as many times they do not know as much as they say they do!

[RosemerryVenet]

I am also on a trial for foot pain at Chapel Allerton Hospital in Leeds. The trouble I find is that I never know what is to do with the Scleroderma and what isn't, though often when I mention something I feel or some symptom, I am told it is to do with the condition. Does anyone else feel very tired a lot of the time? Just general fatigue overwhelms me at times, and I feel such a wimp as so many people I know do so much more than I do without any problem. One of the "downfalls" of this disease is that often there are no outward signs, so nobody can tell there is anything wrong. And no-one has ever heard of it anyway!

[uknlv in reply to RosemerryVenet]

Hi Rose, you are definetly not alone with this, I wasn't diagnosed with Scleroderma/Sclerosis until Jan this year, up until that time I thought I was going crazy and perhaps was turning into a hypochondriac with all my little problems, as I liked to think of them. The fatigue is a common side affect of the disease and I was told that you need to follow what your body says if you are tired then you need to rest! I know it is easier said then done, but you will find it helps to stop and take breaks. I personally pay the next day if I don't.

One of the hardest things is to get people to understand that you have a disease, as there is not much that shows with this that people can see, so they assume it isn't so bad. Even people that care about me had a hard time understanding what I was going through! There is a great paper done by a person with an auto-iimune disease called 'The Spoon Theory' at this Butyoudontlooksick.com site, have a read it may help you and also help others understand what a day in your life is like now.

[grannyannie in reply to RosemerryVenet]

Often feel very tired sometimes, thought perhaps I was being a bit lazy. My feet have become quite painful very recently.The study nurse referred me to podiatry recently because I had a small corn and she didn't want just anyone paring it incase they went to deep and caused a sore.When I saw the podiatrist she said that the padding on the balls of my feet was decreasing because of the poor circulation. She has given me corrective insoles. I'm not convinced they are making a lot of difference but will persevere. You are so right about appearances. People ask how you are and we say fine as we don't want to make a fuss. Take care!