[sarah m]

Hello everyone, I'm new to the forum and was hoping for some advice as I have been recently diagnosed with RSD. On the regular meds and have been booked to have a series of Guanethidine blocks. I am having regular physiotherapy and doing the desensitizing exercises. I was interested if anyone has tried hypnotherapy ? or cognitive behavioural therapy? Has it helped ? I'd appreciate any advice / comments - thanks.

[ali12]

Hello Sarah and Welcome to Neurotalk! You will meet many great people here who i'm sure will try and help you if they can!

I'm so sorry to hear that you also suffer from RSD! I really hope you are able to find something that can help you real soon and am keeping you in my thoughts!!

I suffer from RSD in my left leg and both arms. I developed it when I was 12 years old after an ankle sprain (I am now 14) and it spread to my right arm about 5 months later and to my left arm and shoulder area earlier this year after I fell on some ice. I have tried all sorts of things to try and put it into remission but nothing has really helped so far.

I really don't want to scare you but wanted to tell you of my experience with the Guanethidine Nerve Block. I am in the UK also and my Doctor at Sheffield Childrens Hospital did a Guanethidine nerve block on me when I was first diagnosed with RSD and it made me a LOT worse!

Before I had the block, I could just about manage to hobble around on crutches. After I had the block though, all of that went and I was left wheelchair bound for 13 months. Every time I tried to walk, my leg would just shoot out in front of me and I would fall to the ground.

After I had the block, my mum found an article on the internet stating that you should never inject into an RSD limb unless you absoluletely have to. By that time though, it was too late as the complications had already started happening.

Please do some research into the Guanethidine blocks and ask your doctor if he knows you shouldn't inject into an RSD limb. So many doctors don't know that and often risk making their patients worse. My doctor had never seen a reaction like mine to a block before but wont inject into an RSD limb ever again.

I really hope that the blocks go well should you decide to go ahead with them!

I haven't tried Hypnotherapy or Cognitive Behavioural Therapy before. We did mention it to my doctor but he said that it probably wouldn't work in my case. Everyone with RSD responds differently though and no two people are the same! I have heard lots of people that have had good results from it and hope you do too!

I'm glad you are in Physio. It's really important that you keep moving as much as possible even though it hurts! I go to my local childrens hospital once a week for physio and it helps a little.

Take care of yourself and if you have any questions, please let me know - i'll try and help you if I can!

Alison.

[daylilyfan]

You can click in on "search this board" and type in "hypnosis" under thread title... there is a thread titled just "Hypnosis" where I posted a reply about my co-worker who teaches hypnosis. There were quite a few replies to that post about hypnosis.

I couldn't figure out how to link to that post.

[sarah m]

Thanks Alison, thanks for taking the time to respond - I'm sorry to hear your suffer with this especially as you're so young. It was really nice for you to respond so openly and to talk about your condition - it makes it a little easier for first timers like myself. You've got an amaxing attitude / outlook and I hope you do find something that will help you.

Its funny what you said about the Guanethidine blocks - I have my reservations about the blocks. I'm a nurse and work in recovery and look after patients who have had all different types of blocks and I've heard mixed responses. My worry is logically it doesn't seem like a good idea to inject into an area that is already aggravated. So I will think long and heard before I go ahead with it - thanks for the advice.

I'm on Gabapentin amongst other drugs but the side effects are awful - although for me they do seem to be working for me - I was able to get off crutches within a couple of weeks. So basically I've been looking at non invasive methods of treatment so I try to come off the drugs. ALong with CBT and hypnosis I've also been looking at HBOT treatment and may try that, theres a chamber in London and funding goes through Guys and Tommy's I've been told - but I need to check that and look into it further.

Anyway - Thanks again - and if I can be of any help please contact me although for what I'm not sure - maybe if you need an extra zoombie for a thriller video maybe

(Apologies for any spelling errors and I'm still figurnig out how to use those smiley things)

[sarah m]

Originally Posted by daylilyfan

You can click in on "search this board" and type in "hypnosis" under thread title... there is a thread titled just "Hypnosis" where I posted a reply about my co-worker who teaches hypnosis. There were quite a few replies to that post about hypnosis.

I couldn't figure out how to link to that post.

THank you - didn't know I could do that.

[ali12]

Originally Posted by sarah m

Thanks Alison, thanks for taking the time to respond - I'm sorry to hear your suffer with this especially as you're so young. It was really nice for you to respond so openly and to talk about your condition - it makes it a little easier for first timers like myself. You've got an amaxing attitude / outlook and I hope you do find something that will help you.

Its funny what you said about the Guanethidine blocks - I have my reservations about the blocks. I'm a nurse and work in recovery and look after patients who have had all different types of blocks and I've heard mixed responses. My worry is logically it doesn't seem like a good idea to inject into an area that is already aggravated. So I will think long and heard before I go ahead with it - thanks for the advice.

I'm on Gabapentin amongst other drugs but the side effects are awful - although for me they do seem to be working for me - I was able to get off crutches within a couple of weeks. So basically I've been looking at non invasive methods of treatment so I try to come off the drugs. ALong with CBT and hypnosis I've also been looking at HBOT treatment and may try that, theres a chamber in London and funding goes through Guys and Tommy's I've been told - but I need to check that and look into it further.

Anyway - Thanks again - and if I can be of any help please contact me although for what I'm not sure - maybe if you need an extra zoombie for a thriller video maybe

(Apologies for any spelling errors and I'm still figurnig out how to use those smiley things)

Thank you Sarah for your kind words - I really appreciate them and am glad I could help you, even if it is just in a little way!!

I would definitiely do a lot of research into the Guanethidine Block before you decide to go ahead with it! I didn't want to scare you with my previous post but wanted you to be aware of what happened to me as i'd hate for you to go through what I did!!

When I had the block, I had it the day after I was diagnosed with RSD as my doctor admitted me into hospital. We weren't really given that much info about the block - my doctor just explained what sort of drug was used and said that it could help lower my pain and I guess when someone tells you something could lower your pain, you want to get it straight away! Thinking back, we should have done a lot of research into it beforehand but as I was in the hospital, we didn't have internet access and trusted my doctor.

The Guanethidine Blocks seem to be an 'English' thing lol ! I am in the UK also and it seems as though nearly everyone in the UK with RSD has a Guanethidine Block lol !!

That is so great that you are a nurse and i'm sure it will really help you make your final decision as to whether you want to go ahead with the block! I want to do something in the health care profession when I am older, especially now that I have RSD. I want to be either a Physiotherapist or Psychologist and am going to College from September for 2 years to do a Young Apprentice Course in Health and Social Care - I really hope I can survive it as I know it's going to be a lot of hard work!!!!

Please do lots of research into the blocks and weigh up the pro's and con's! No one can force you into doing anything you dont want to do - it is your body and has to be you that makes the final decision!!!

I'm glad the Gabapentin has helped you so much but sorry you have to deal with the horrible side effects!! Has your doctor ever discussed Lyrica (Pregablin) with you? My Doctor put me on it last year and it is supposed to be very similar to Gabapentin but has fewer side effects (it's the new version). Neither the Gabapentin nor Lyrica helped me but it might be something to look into if you haven't already!

Take care of yourself and if you need anything, please know that I am here for you!!

Keep us posted as to how the block goes should you decide to go ahead with it! I hope you're having a good day!

[daniella]

I may try HBOT now too. For me the therapy mentally that I liked the best is biofeedback. I have a lot of anxiety and really was amazed and how I could calm myself down at times. I have down CBT many times before rsd. At the pain clinic we had group and individual therapy as well. I recently went back to a pscyh after a break for awhile due to the pain and how it was mentally effecting me. I am so glad I did because really my anxiety has been helped and mentally I don't feel as crazed. It has not helped with my sleep and I still have a lot of work mentally and physically but one step at a time. I am not going to do this but my pain doc now who does reg treatments told me to look into acupuncture. I am not like I said going to do it but they told me that they would not have to put needles in or even near the rsd areas so just fyi to people. Hang in there

[sarah m]

I want to do something in the health care profession when I am older, especially now that I have RSD. I want to be either a Physiotherapist or Psychologist and am going to College from September for 2 years to do a Young Apprentice Course in Health and Social Care - I really hope I can survive it as I know it's going to be a lot of hard work!!!!

Please do lots of research into the blocks and weigh up the pro's and con's! No one can force you into doing anything you dont want to do - it is your body and has to be you that makes the final decision!!!

I'm glad the Gabapentin has helped you so much but sorry you have to deal with the horrible side effects!! Has your doctor ever discussed Lyrica (Pregablin) with you? My Doctor put me on it last year and it is supposed to be very similar to Gabapentin but has fewer side effects (it's the new version). Neither the Gabapentin nor Lyrica helped me but it might be something to look into if you haven't already!



Thanks - I hope you had a good day too - I was thinking of you today.

I think I will give Pregabalin a try - I need to get a crossover regime though - I'm lucky got a good pain doctor who liases with my GP.

About the blocks - I'm glad for the info - its good to have a balanced view of things - I talked to a couple of the anaesthetists today and the pain nurse specialists and they seem to think if it works it works well - but if it doesn't it could also cause problems . And it seems to me once you start down that road - its a very long journey - so definitely having second thoughts - I'm not on the theatre list till August so I have a few weeks yet to make my mind up.

I booked for hypnotherapy on Monday - its worth a try. Its with a nurse who is trained in complementary therapies - so I'll let you know if its any good.

Anyway - just wanted to let you know I've been teaching in nursing on and off for a few years and I've just finished my degree in health care - and starting my cert ed in teaching - hopefully some time in the future I will go into teaching health care studies. When the time comes - if you need any help with you studies, course work or any support - thats something I could help you with - if you like. And I'm sure you will be fine doing it- basically half the battle is having the motivation to learn. So as your enthusiatsic, you want to learn the subject, you've got the right attituide and determination - you will do well. I know this is an awful condition - but you are obviously very bright, strong and positive individual - and that will see you through not only any studying you want to do but also in life in general.

Nice to hear from you again - Take care (and I found another character thingy - brillant - - love these things!)

[sarah m]

Originally Posted by daniella

I may try HBOT now too. For me the therapy mentally that I liked the best is biofeedback. I have a lot of anxiety and really was amazed and how I could calm myself down at times. I have down CBT many times before rsd. At the pain clinic we had group and individual therapy as well. I recently went back to a pscyh after a break for awhile due to the pain and how it was mentally effecting me. I am so glad I did because really my anxiety has been helped and mentally I don't feel as crazed. It has not helped with my sleep and I still have a lot of work mentally and physically but one step at a time. I am not going to do this but my pain doc now who does reg treatments told me to look into acupuncture. I am not like I said going to do it but they told me that they would not have to put needles in or even near the rsd areas so just fyi to people. Hang in there

Thanks for responding - I appreciate any info / comments or advice. I'm sorry your suffering so much - I'm glad to hear you feel that the psych helped. I'm finding out over the last few weeks that the emotional and psychological side really has affect on the pain and the redness and blotchiness in my ankle and leg.

I'm glad to hear you find it the biofeedback helpful - I'm on a waiting list to see specialist pain pychologist to have an assesment and maybe CBT / biofeeback. I don't think I'm an overly anxious person - the job is stressful - but I've been a nurse for years and worked in more stressful areas such as ICU and A&E before now- which are very hard physically and emotionally and coped well. However I'm looking forward to what they have to say - I'm quite open minded - so it will be interesting as normally your view of yourself is usually different to how people see you and those sort of pyschological assessments can be useful in opening your eyes to areas or traits of yourself that you are unaware of.

Interesting what you said about acupuncture - I though the needles went all over - I hadn't really considered that as an option yet. As regards to the HBOT I just asked my pain doc to refer me - but if I do get funding and it goes ahead - I will let you know how its goes.

Thanks so much for the info and for responding - I hope you feel better & Take care

[daniella]

A few thoughts I have but are you still working as a nurse? Anyhow I think it is one thing to know rationally what to do to cope but having support can be very helpful. Also for me as anxiety is truly my middle name I can tell you it has an impact on my pain level in the way I deal with it at times. Regardless I am in pain anxious or not but when I get anxious to a higher degree really I am just so down and not rational in general.So getting on the right meds I think in combo with other self help and therapy can really help. I have already looked into HBOT and just want to make sure with my reg pain doc that it won't increase my pain like other treatments I am going to try it. The acupuncture I was told since no one is aloud to even touch my rsd area which is the legs that they can put it in my ears for example cause it sends the signals. Also the acupuncture is not just about that but about helping relieve tention/anxiety so you sleep and eat better and that in turn helps pain. On a side not of the view of the psych. I have seen many therapy type people before rsd and I will say I have gotten a range of feedback from them. I am not saying to not listen but I am just saying some things may make sense and some may not. Good luck and keep us updated. Also something that has helped me in therapy/life is to take 1 day at a time. They say that in recovery type things and I truly feel that with even this condition