Hi new to this, I suffer with CRPS had it for 4 years now in 2011 I had to have my left arm amputated,now I have the same in right arm

Worried I mite have to amputate the right arm as we'll

[Hidden]

Hi and welcome, so sorry to hear your story.I dont have any know6 of this condition but hopefully someone will come along to help.Just wantef to say I eould tell my consultant this is my big worry and ask for his honest opin7, take care

[briar-rose]

Hello there, you do sound like you've had it extremely bad, mine started in my left shoulder, now it affects my whole arm, both legs, neck and ribcage, have been put on the list to see a pain specialist who specializes in spinal stimulation - is this something they have considered with you? I don't know what other treatments you have tried, but i would speak to your consultant or g.p about your fears, maybe some counselling might help?

Amy.

[Hidden]

Hi briar-rose, I have had the spinal cord stimulation but it did not work for me i am on a lot of meds, and I am under a pain specialist. When I had my arm amputated they gave me a nerve injection and that work, but now they won't give that again.

[Kat3]

Hi Yogibe,

I'm so sorry to hear about your pain and your fear about losing another arm. Did the amputation of the left arm get rid of the pain? I know sometimes people get phantom limb pain. Did they say why they wouldn't give you a nerve injection again? You could always ask your GP to be referred to a new pain specialist. Look up who is the best in your area and ask your GP to refer you to them (unless you are happy with current one and they have a good reason for not giving you the injection this time). Also you might be able to be referred to electro-acupuncture - I wonder if this could help. I saw a pain specialist once who had someone on his team who could do that.

I wish you the best of luck,

Kat

[Hidden]

Hi I too have CRPS had it since 2000 it affects my left leg/foot below the knee .In May I had this leg amputated to try and help my pain ,I'm not sure if you had your arm removed for the same reason or if you developed CRPS as a result of your amputation.I was told at the time if it was going to jump to my right side it would have started soon after the op so 4 years seems a long time. Talk to your pain consultant he should be able to explain what is happening and suggest ways of dealing with it .Fiona

[Hidden]

Hi kat, yes I get the phantom limb pain and it's bad as the crps, I have got the best pain specialist he told if they try the injection in my right arm or hand it could bring the crps on worse so I just don't know what to do, I go and see my gp twice a week and she tells me that I must just get on with it I all way ask her for sleeping pills so I can take them and never wake up that's how I feel every day the meds I am on don't really help

[Hidden]

Hi fvee, I had my arm amputated because of the CRPS.

I got the CRPS after a op on both of my hands it was bad in my left arm at first and now it's started in my right one at the moment it not to bad in the hand but my elbow is bad

[welshnut]

I have crps that started in my left leg but has spread to the whole left hand side of my body. I begged my specialist to amputate but my specialist told me because the problem was in the pain receptors of the brain it would not help the pain. I often wonder if they had amputated would it still have spread through the rest of my left side, reading these replies makes me think I am glad I did not go ahead with the amputation.

nutty

[Trishmurfin]

I too have CRPS and I am on a combination of strong drugs I am struggling to cope lately with moving house it has completely thrown me and my pain is worse than ever I'm exhausted. But I have read a lot of good things about bath hospital could you try to get a referall to there? Good luck

[Trishmurfin]

I too have CRPS and I am on a combination of strong drugs I am struggling to cope lately with moving house it has completely thrown me and my pain is worse than ever I'm exhausted. But I have read a lot of good things about bath hospital could you try to get a referall to there? Good luck

[Hidden]

There is a Dr called Ramachandran who has done a lot of research on this and written several books. he works in the US. He uses mirrors to rewrire the nerves and therefore improve the pain. Try looking up his books on Google and/ or Amazon, they are sold in the UK.

[Hidden in reply to Hidden]

Hi bowbells, I have tried the mirror box and the glasses it did not work for me

The specialist i have been to see we have tried every thing u can think of, I am waiting to see a specialist in Liverpool he is the best in the uk and Europe

[Hidden]

Wishing you success with your new consultant. Sorry you are having such a rotten time.

[welshnut]

I tried and failed with the mirror treatment as well. I use nerve therapy to help sustain the feeling I do have and recognise but have yet to find a therapy that has worked.

I try to control my environment, temperature and materials that I wear. I try to keep my brain active which is difficult with the meds and I try not to trigger a flare under any circumstances though sometimes it just has a mind of its own.

nutty

[Chawner]

Can I ask you how you knew it was time to get your arm amputated ?

I'm just curious because at the moment I'm thinking it would be better to be without my leg than not to use it due to the CRPS.

[Hidden in reply to Chawner]

Hi chawner

I knew it was time because my hand was twisted and my arm from the elbow down, also the burning pain was really bad. So I went to see my pain specialist and told him if he won't help me then I will cut it off my self, he told me that it would be hard to find a surgeon that will do the amputation. If u think that the operation would help u then go and speak to u pain specialist. And if u go ahead with it and u go and see a surgeon ask him when u go down for the operation get them to give u a nerve block. I hope that gives u some think to think about, if u want to any thing else I would be happy to help

[Chawner in reply to Hidden]

Thank you for the info, I'm not there just yet but I feel I will be in a few years .

[Hidden in reply to Chawner]

That's ok need any info just let us know

[woolywonder]

The UK national centre for diagnosis and rehabilitation for CRPS is at the brilliant Royal Hospital for Rhumatological diseases in Bath in Somerset. The service is led by Proffessor Mc Cabe. A wonderful service and latest evidential approaches. I can highly recomend this service. I got referred by telling my GP I wanted referal to Prof Mc Cabe.

[Hidden in reply to woolywonder]

Hi woolywonder

I would not be aloud to use that centre in bath because I live on the Wirral and I got the Walton centre in Liverpool and I see Andrés goble he is one of the best in Europe and he as told me that I have one off the worst case off CRPS he has ever seen and there and there is only one thing he can do their is an injection but I have been told that I can not have it that the nhs who said I could not have it because it's cost to much.

[woolywonder]

I live in Shropshire but the NHS runs a choose and book scheme. Thats how i got the referal to Bath and had 2 weeks rehabilitaion with daily crps physio, crps Occupational Therapy, Crps Hydrotherapy and crps related phychotherapy..which helps you to cope and understand the condition. Im so sorry for your pain. I have lardocaine patches and pregabalin for mine. If i can help or support you in anyway do get in touch again.

[Hidden in reply to woolywonder]

Hi woolywonder

I have them patches, 30 msg oxycodone, 900mgs pregabalin, 150mgs amitriptyline, 15mgs mirtazapine, 2.5mgs onglyza, 20mgs fluoxetine, 20ml morphine a day. The nhs don't give us a choose up here, when I was told that I had CRPS the doctor told me that I would need 3/4 days a week of physio in the end I got physio for 20mins once a week in the end I stop going and that when I went back to my pain specialist and told if he dose not amputate I will do it my self. So u are very lucky and I hope it works out for you it's to late for me my right hand and elbow are starting to go so I my have year or so before they go and that's when my life is over.

[libelle]

Get yourself Serrapeptase, a product produced by silkworms to get out of their cocoons. It will clean your arteries. If you have bloodclots, take Nattokinase, to thin your blood. You can take as much as you like, as it is natural it will not harm you.

Google both, a supplier will be found.

A man needed a heart bypass op. He was afraid. He took 7 pills of each 3 times a day !!!! It did not harm him, but after 3 weeks he did not need his bypass operation. Try it, it may solve your problems as well. If not, at least you tried. I wish you well.