CRPS

[granny55]

Following several operations on both feet I have been diagnosed with CRPS. I have attended a residential course at Bath, which at first seemed useful, I now back at square one & the pain is almost unbearable. As you can appreciate I need my feet & find my situation depressing. I only have Zapain as pain control. I also have Parkinsons so although other pain killers have been tried they seem to clash with this medication. Has anyone got any suggestions that may help me?

Thankyou.

[BeccaWhite]

So sorry to hear you have been diagnosed with this and are suffering.

I have had this disorder, as well as numerous others, for 22 years. It too started in my lower leg.

I had to cope without pain relief and help as the medical fraternity had no real clue what was wrong with me for quite some considerable time; years in fact, so I am pleased that you have had some help, at least.

The only real thing I can suggest to you would be to get back in touch with Bath for their advice or to make contact with your Dr as soon as possible to see if there are any other medications you could take to help ease your pain. I appreciate it is difficult when dealing with other health issues as well, but they should try to help you if they possibly can.

There are some RSD/CRPS groups that can offer advice to you.

But I do realise it is such a difficult and excruciatingly painful disease to try to live with.

My very best wishes to you.

[briar-rose]

it is indeed an awful condition, the medication offered really doesn't even cover the pain, more research is definitely needed but sadly we seem to beat the bottom of the priority pile - I bet that wouldn't be the case if the prime minister was suffering like the rest of us!

I was in GNC looking for a supplement when one of the gents in there asked why I was looking for that particular item, I told him about the nerve pain an they had not long done a course on pain and what supplements were helpful. He even went and got the training folder to double check what was recommended for nerve pain, it was strangely enough Fennel, they had fennel teabags (made with purely fennel seeds) so got a box, and have between 2 - 6 cups a day, depending on how bad the pain is. I have to sweeten it with honey, as I am not too keen on the aniseed taste but it does help a bit.

Have they considered a spinal stimulator at all? I suffer from CRPS primarily in my left shoulder and arm, have recently had one fitted and have been finding it helpful in managing my pain.

I agree that getting back in contact with your doctor or pain clinic is the next course of action and I hope they are able to offer you a better solution.

Try to stay positive, that is one of the reasons I love my dogs as they always seem to know when your down and always manage to put a smile on your face

take care.

Amy.

[Pollyerrington]

Hi, I can see you posted this 2 years ago, but was wondering how you're getting on. Did you get any help? how are you now? I know that Bath don't offer spinal cord stimulators.

Did you look into getting one?

I was diagnosed with CRPS in my foot in Sept 2016, ans then the hospital made the biggest mistake and operated on my CRPS foot! and now it's so much worse.

I'm have a lumbar sympathectomy in 2 weeks, and if it gets blood flow to my foot I'll be getting the stimulator too...

I really hope you've managed to get some help... I love to know how you're getting on.

x