Newbie
 

Hi

I'm Rose, I'm 20 and I'm from the UK. I have full body RSD following a fall 4 1/2 years ago. (scary!) I also have HMS and secondary generalised dystonia. I'm not going to go through the full history of it because most of it is long and painful, just simply I have had sympathecic blocks, sympathectomies, other blocks, physio, hydro, ot stuff, pemidrinate infusions, eps. tried almost every med out there, seen a pain psychologist etc..I'm currently on oral ketamine (and other meds) and have been for over a year, and it has definetly made a difference to my pain levels and alloydinia levels. (I take 25mg 3x day). However, even though the pain is sligtly easier at times (not atm though) I am still unable to use my arms/ hands, or stand/ walk etc so am in a wheelchair full time and have to have constant care. grrrrrrr. I also get really dramatic RSD symptoms such as swelling/ colour change/ alloydinia/ etc etc...

However, I have just started university 4 hours from home and am living away from home!!! It's brill! but abit weird - getting used to live in carers and trying to manage my pain.

Has anyone found a way to cope with fitting their life round the 2 hours of pain relief that my painkillers give? I find that taking my tablets removes enough pain for me to be able to achieve stuff but that after about 2 my pain goes back to being so bad I can't think anymore... (horrible, you can't sleep, think, concentrate etc - but I guess you all know about that!) any advice?

anyway
nice to meet you all!

rosie xxx

Welcome Rose...Nice to meet you. I'm sorry it has to be this way. I know you are in the UK and I've heard that when it comes to pain meds, different countries have different protocols/rules...but I would think if youre only getting two hours of relief, that a good pain doc would be looking at longer term options. Have they considered you for either a duragesic (fentanyl) patch or a morphine pump? I know a spinal cord stim is probably out of the question because your pain is so widespread that it would take so many leads, and a scs works best if the pain is located in only one area, but if it were to work with multiple leads, and the person implanting it had experience with full body rsd, it just may.

Have those options been considered for yoU?

Can you talk to us about your sympathectomy and how that worked out for yoU? obviously not well since you didn't heal from it. Did it work for any period of time at all?

So young...it happened to you so young. I feel so badly for you.

I think it's awesome that you aren't letting it get you down and you are going to university now though

Hugs
LisaM

hi rosie. welcome to neuro talk. :D

Hi Rose
 

Welcome. Can't talk much right now. Big flare up heading my way! Just wanted to say hello and will chat with you later to a point where you will get sick of me:D Once again welcome. Chin Up!!

Mark :)

Hi Rosie,
Very pleased you've joined us, sorry you're going through such problems, hope we can help a bit. I'm from the UK, though based in Hong Kong, where are you based?
all the best

hi rose, how much oral ketamine are u on? is it a liquid or pill? i'm on it as well and have pretty good relief from it... although i can't function too well while i'm on it...

Hey

Thanks for the welcome!!!

its 4am here and i havent had any sleep yet my pain is soo stupid - am getting slightly fed up of continuous pain and feel like im moaning about it far too much, therefore have emailed you all back.

Lisa --> nice to meet you! I have been on fentanyl patches (cant do RSD skin.... doesn't work with it../ MST (couldnt increase the dose any further)/ methadone (ditto)/ oramorph (ditto) / clonidine patches etc... drs won't put a morphine pump in because of the non healing RSD/ surgery etc. Sympathectomies - anything you want to ask me - go for it! Basically I was diagnosed within 2 weeks becuase I have "very severe" RSD - and they thought they would have to amputate my arm before it spread.. and then considered amputation of my legs as it spread.. (glad I didn't go with that option!). I had several blocks which increased the temperature of my extremeities and got rid of the black dead look that my limbs all developed although effects wore off after a couple of days. because of that they decided to perform sympathectomies to try and stop me needing amputation (s). It didnt help. unfortunatly. well. for a couple of days. I saw my consultant the other day and told me that there is nothing I haven't tried that they think will help me, and that I have to just get used to it. However, at last it has been acknowledged how hard this is to live with and that I have to do the best I can with what I have left. However, uni is great, very hard physically, but very rewaeding - im living in student halls with my carer and just trying to join in as much as poss!! just wish the pain could be controlled for longer. the worst bit is trying to explain "yeh, i know im in an electric wheelchair and my muscular effort is zero... BUT.. the pain is so bad I can't stay out for long .. meugh! how long have you had RSD? have you found anything effective?

Hey curious! (great name!) thanks for the welcome. Hi Mark, hope the flare calms down soon- I hate them!!!!! Hey artists - where do u have RSD? thats so cool that you live in Hong Kong - where did u live in UK. I am at university in Bath but live in Essex.

Hope your pains not too bad!!
Love Rose xxxxxx

Hi Andrea

I take 25mg 4 x day. I actually get almost no side effects from it apart from visual problems when I first started it. I take it oral in liquid. I also take lots of other stuff but I think it is the ketamine which has helped me the most. Far less side effects and better pain relief than morphine etc.

are u on low dose ketamine or short term high dose...??

do you take it as a breakthrough pain med? or just generally?

love rxxxx

Hello Rose... Nice to meet you, and welcome to the group!! I found this board maybe a couple of weeks ago, so I myself am still pretty much new!! I am glad I found this group though, one of the best things that have happened!!

Everyone on here is great! Seriously, I have talked to some very nice people! No question ever goes unanswered!! People on here take their time, and give input and advice to the topics!! I have learned alot about my RSD and others since I have been involved in this group!! Its like people on here get to know each other on a personal level almost like a family!! Its awesome!! :)

Youve come to the right place, thats for sure!! :) Look forward to talking to you sometime!! Take Care!!

--Heidi

Hi Rose,

Bath eh? How lovely - for those who don't know the UK, it is Jane Austen country, full of beautiful Georgian houses and crescents, all sandstone-coloured, with a wonderful working Roman spa, one of the jewels in the country's (rather jaded :p) crown.

I'm really impressed that you've forsaken the comforts of home to battle with student life, that must be very tough indeed. Your RSD is far worse than mine, my life is fairly normal, but painful, the RSD is in my left hand/arm after a colles fracture wrist break 2 years ago.

I assume you already know the excellent RSD UK site and forum, but if you don't it's at:
http://www.rsd-crps.co.uk/phpBB2/index.php

It might be useful for checking med brand names mentioned here - many of them are called something different in the US and UK.

Well, intrepid lady, I wish you all the best and really hope you can get more than 2 hours pain relief somehow...
take care, all the best.