Crps diagnosis.

[Bunce]

Just been diagnosed with complex regional pain syndrome, which have nerve pain in my feet, what have people found helpful for this condition? I’m on lyrica, nortryptiline, lexapro. Really hard to wea4 a sock or shoe and walking in general

Anyone know of a good pain specialist in Sydney?

[SqueakMouse]

Hello from America, Bunce😍❣️I just noticed your post reporting your recent diagnosis of CRPS; it's about 4:30 am here so I should probably try to catch a few hours of sleep before I attempt a more detailed letter (my posts are pretty rambling on the best of days😳😋, and I'd feel terrible if one of the first replies you received in this forum ends up being barely coherent😄🤣😉), but I wanted to let you know that I have CRPS in my feet too, and I'd be delighted to share my own experiences with the subjects you asked about in your post...but most of all, I wanted to let you know that your message has been heard, and you're not alone with this, and you have the prayers and support of many many people here, no matter how far apart our hometowns might be😍 Wishing you abundant health and effective pain relief, and a joyous holiday season❤️💚❤️💚💚💚❤️💚❤️💚❤️💚❤️💚❣️

[daverm]

Hey Bruce

I was on over 750mg Lyra a day plus others I have serve never damage in my chest which makes hard to breath and do most things. I had a pain specialist on the Gold Coast who gave me nerve deadening needles. These have been somewhat help full I have had them a couple of times ( 16 +). Then I made a decision to stop the Lycra and see if the needles worked . They have in some places but over all I still have pain. But I feel the Lyra was doing more damage than good. Have you looked into deadening the nerves in the affected area. This is painful to start but long term much better than tablets. I do say you might have to revisit the needles again if not fully successful the first time. Well that is the best info I can give as different area with same nerve problems. But in some cases it works well . No harm giving it a try. Good luck mate.

[Clycat]

I have crps in my right lower limb, foot, ankle. Am in the UK so cannot comment on docs in Oz but from my background reading it seems as if the health service on your side of the world is much more aware of the condition than here. I think it is against the site rules to name doctors on here (think I saw that somewhere a long time ago). If you search through my previous comments on the site you will see my questions from when I was first diagnosed and all the responses I received through to me trying to answer other people's questions and you will find names of others in similar predicaments. There are many people on here with crps and other types of neuropathic pain. Do please make sure you see a pain specialist with expertise in crps so that you can start treatment - the treatment tends to be more effective the sooner you have it so please don't put it off. Sorry this is such a rushed reply today but I have to go out in a minute. I remember all the emotions I went through when first diagnosed and sympathise with you.

My best advice to you at the moment is to find a doctor you can trust, accept all help that is offered to you be it from family and friends or medical and yes research more about the condition as you are now (I doubt anyone can stop you) but please try to remember that everyone's situation is different and the experiences you read about will not necessarily happen to you.

Nortriptyline has helped me a lot and I hope it helps you too but if it doesn't there are other drugs that you can try. Good luck, let us know how you get on and if you ever find a comfortable waterproof shoe, buy 10 of them!but

Jo x

[RxMan]

Hi Bruce, I've had CRPS for 14 years...in my chest area after lung surgery. I can't take Lyrica (I get edema in legs) and gabapentin (works wonders for most) side effects were intolerable. I was put on Methadone, then sustained release Morphine, then back to Methadone. I got tired of side effects and weaned myself off the Methadone. After 14 years, my CRPS pain and sensitivity to touch have decreased a great deal.

[Bunce in reply to RxMan]

Hi there,

Thanks for getting back to me, it feels I’m very alone with condition as I see other people having no issues with walking. It’s hard not to get angry, are you able to get back quality of life? Does other alternate therapies help? Does low dose methodone help at all for nerve pain? The lyrica and nortryptiline have done nothing!

[RxMan in reply to Bunce]

Hi Bunce. The methadone is supposed to be effective for nerve pain. It wasn't very effective for me, and it it the most difficult narcotic to get off...took me 2 years to wean off 45 mg a day. It screwed up my testosterone levels, and the constipation was unreal. I'm now on 10 mg hydrocodone 3 times a day. Thankfully my CRPS just lessened over time, now my pain is from severe osteoarthritis of entire spine plus scoliosis and kyphosis...and huge knots of muscle pain.

One more thing... I qualify for a medical marijuana card as I have cancer. It helps me with the pain when it gets really bad. It's also good for anxiety and spasms. I'm 68 years old, retired pharmacist and medical marijuana is a blessing. It doesn't eliminate the pain, you are simply able to kind of ignore it it's not dangerous and isn't addictive.

[Bunce]

Have any of you guys got an relief with a norspan patch 5 mg for this condition? Thanks Anna.