Churg Strauss

[Lync]

I was diagnosed with Churg Strauss last year.Feel that I have been on a roller coaster.have not had a well day for over a year.what can I expect.

[Katie18]

Hi lync I was diagnosed with CS 18 months ago. One of my friends who is a nurse told me I was likely to feel pretty rough for a year and then things start improving - and that has been the case for me. The problem with CS is it can hit so many areas of the body - apart from the chest - and so what everyone feels varies so much. With me it affected the nerves to my lower leg and foot and I suffered footdrop and could hardly walk. The consultants all told me my nerves were very unlikely to recover but they did - they started to grow back after 12 months. It takes a while to get the balance of medications right and for your body to get used to them and their side effects. I'm currently coming down off steroids very slowly - just half a steroid a month- and I can still feel that slight reduction as it makes me feel wiped out with more aches and pains - but I hope to be off them by the end of the year. I used to always ask my consultant will I ever get my energy leaves back again - and she has been pretty non committal. But at there are weeks now hen I almost feel like my normal self. I think having plenty of rest helps - and recognising when your body needs it takes some getting used to. I have gradually increased my hours at work - and although I'm not where I used to be , I'm not far off now at 26 hours a week. The nerve pain is still there and controlled by medication. I think it has got better but also I've learned to live with it. I am much susceptible to infections and viruses due to the medication lowering my immune system and my body does struggle to repair itself so I can end up on high doses of steroids to help it for short periods which hate. My boss recently came into work ill and by the end of the week I had it too. I am also still a stone overweight which I try not to get upset about. I go to the gym very regularly but I still eat far too much as I'm constantly hungry due to the steroids. I try and make sure it's healthy stuff but my sugar cravings get really bad. It's difficult to know what else to tell you as everyone with this disease is so different but hopefully that helps. One step at a time and there is no quick fix it something I'm still coming to terms with

[Ayla Volunteer]

Sorry to hear you are not feeling too good, Lync. What treatment are you on at the moment? Often, the therapy gives us worse symptoms than the illness itself, at least in the high dose early stages! Or, if you are being under medicated, then your symptoms may not improve as rapidly as they should. Perhaps you could share more of your story? Let us know and then it will be easier to connect with what is likely to be going on with you.

Ayla