Hi I'm new to this site thanks for the add. I have recently been diagnosed with churg-strauss and have one more cycle of cyclophosphamide to go I'm coping ok but the pain in my legs is getting me down. Has anyone used a tens machine or similar and did it help? Just wondering if it is worth the investment.
Tracey
Hi Tracey,
I did buy a TENS machine but didn't find it very helpful unfortunately.
Do you know the cause of your pain? CSS can be associated with peripheral neuropathy, have you had nerve conduction studies? Has the pain worsened since you have started treatment?
No the pain isn't as bad now it is reducing. Iwas diagnosed in march after loosing the use of both legs. I did have nerve conduction tests and it is just the lower legs that are affected have been told it may be permanent but I live in hope. Git one more cyclophosphamid IV to go. I need to do everything I can to walk as I'm cabin crew
Tracey
Peripheral nerves can take a time to regenerate unfortunately. Have you been offered neuropathic pain killers such as amitryptilline or gabapentin as they can be helpful?
hi Tiss I have CSS and was in a very similar situation to you five years ago. I took and still do take a low dose of amitriptyline which was the only thing that really helped. I also took pregabalin for at least a couple of years.Other things that helped me were reflexology, swimming and being in water exercising my legs and feet and I tried various physios who gave me foot exercises and crutches at the beginning and I used the hospital's mobility team who gave me various splints and foot devices. I was also told I wouldn't walk - but I was very lucky - after a year I started to notice a slight difference and they did very slowly grow back. I can walk now - and don't use any foot aids - so please don't give up hope. Although my feet are far from perfect and I wear steep innersoles and can only wear trainers or specially made shoes. I can't stand for hours or walk for more than about a couple of miles at a time - but compared to how I was with completely drop foot on one side - it's amazing. I do hope things improve for you and it is very early days . I have known other people too whose nerves grew back.
Thanks guys this is a great help. Was beginning to feel like I was alone in all this. I'm taking gabapentine and paracetamol along with prednisolone. I think I'm just a very impatient patient lol. I can't believe how I could come home from work at midnight and by 3 am not be able to walk. It's so frustrating being si reliant on everybody. I guess I'm lucky to be doing what I'm doing now at least. I'm trying the sports tape the athletes use at the moment and thdt seems to be helping slightly. I did want to go swimming but was advised not to whilst having cyclophosphamid but will be down the pool as soon as it's finished
Thanks for your replies
Tracey
We are very lucky here in Edinburgh to have the use of a warm pool for an hour a week through the back pain society. It is 34 degrees and is a lovely pool located in a school for disabled children. I find it very helpful for painful legs.
Maybe there are other pools like this that can be hired out in the evenings?
I am a
I am a CSS patient with the usual treatment 11mg of pred and 5mg of that chemo tablet, I have developed a fatty liver ,not sure of which blood test as it was a kitchen sink one ie everything ,looking for all the hep a b c etc no serous but I am producing to much iron the test reading was liver function normal top is 50 I am 355 thus the chase .The kidneys are not to good 40 rounds of lipo ? In surgery , has anyone had these type s of problems with these two organs and is it side affect of medicines or CSS . I hope no one has these problems but if that is not the case any thoughts on diet or treatments etc thanking you all and God bless as this disease is a shocker .
Dear Tracy,
First of all let me say that I'm, without being 'patronising, very sorry that you are suffering so. I am sending you my prayers and, very best, wishes Tracy.
However the short answer, to your question, is it COULD help yes....However not necessarily. Sorry that this is NOT much help-indeed rather akin to a Chocolate Tea Pot/Waterproof Tea Bags or Artificial fleas! The main problem is how 'different' we all are-so what works for one person, may not for another. This can even be the case when the symptoms appear the 'same', or 'very similar'.
My best advice is to see if you can, perhaps by speaking to your Doctors/Consultants, try to borrow a TENS machine. At least you would know, even if you were lent an 'old machine', if such an investment could be, of benefit, to you.
Sorry that I can't be of more help Tracy.
Hope that, in some way anyway, you find some pain relief.
Kindest wishes
AndrewT
Churg Strauss Vasculitis
Churg Strauss
Churg Strauss Syndrome
