Hi all,
I know I haven't been around in months - an awful lot has been happening - but I won't put that here. I just noticed this question and thought I'd have a little say... I got RSD in January 2002 when I was 16 in my right wrist. Within 4 months it had become full body and I am also affected internally.
Rosie - I can't tell you how good it is to see you on here - I have missed you so much! I hope you are doing as well as can be expected and please know that you are in my thoughts and if you ever need anything, I am here for you. I hope to see more of you around here soon when you feel more up to it and have more time.
When I think about what has changed...
Pain: The pain feels less "sharp" than it was - as in I can cope better with it day - to - day (someone can touch my leg and I won't scream.. I'll just feel like it).. but it seems to impact my life so much more now, it's so deep inside my body that nothing I do or any meds I take can stop the pain.. I'm so used to it now that sometimes I don't even realise I'm in pain because, well, my pain is never below a 9 and so it just becomes.. life. In the last 2 years I've started to pass out from pain and have severe dystonic storms which are agony and make me pass out. Tonight I had a really severe fit and was then unconscious for another hour. I guess a positive is I am no longer scared of pain and have learned to manage it - I use my mind to control alot of the pain (by shoving it into the background until a time when I can deal with it) which has given me a little bit more freedom from it (like, if someone bumps me when I'm out in the street then I can get back to the car before crying instead of making a huge scene).
I totally understand what you mean about the pain seeming less because we have had it such a long time! When I spoke to my PM Doctor, he said that it is because our bodies build a "tolerance" to the pain and can therefore accept it more as it is impossible to be screaming in pain 24/7. I still get comments off many people though as to how I can be in this much pain when I may not look like it all the time. I feel so sorry that you have to go through all of this.
Mobility/ Strength: I have generalised dystonia and therefore I have severe dystonia which dislocates my joints. This came on after the RSD although drs aren't sure whether RSD caused the Dystonia or whether I'd have got Dystonia anyway.. I can't move my legs and have almost no use of my arms or hands. My elbows, hips, knees, ankle, shoulders, wrists and neck are all contracted. I haven't stood or walked in 6 years.
I'm so sorry that you have to deal with all this
. I have Dystonia in my left leg and right arm and that is SO frustrating, I can't imagine having it full body - you're an inspiration and I mean that.
Independence: I am totally reliant on boyfriend/ family/ carers. I have to be fed, hoisted, dressed, taken to the toilet etc. I can sometimes control my electric wheelchair otherwise my carer/ boyfriend/ friends etc do. It is a nightmare. Though it is the dystonia that has caused much of this reliance. It has made me have to confront my hypersensitivity and make me find a way of dealing with the pain from it. I have found that the hypersensitivity, though it is still AGONY, is less.. as in, "someone's going to touch me --> that's going to burn --> my arm feels like it is burning (Acceptance)" instead of "someone's going to touch me --> NO! if they do that they'll set my arm on fire --> (screams and crying). If anyone else can understand that?
I totally understand also what you mean about the "acceptance" stage. I don't think we will ever be able to accept pain but when I look back to where I am now to where I was a few months ago - I have come a long way. I still have 24/7 pain that never goes below an 8 but my tolerance has improved a lot. I used to SCREAM in pain when I went to PT but now, I just make small noises. Sometimes I cry but it's not as bad as it was. That doesn't mean i'm not in pain, because I am - I have just learnt to try and accept it in order to do my PT and everything.
My PM Doctor used a good way of describing pain to my mum. He said "Imagine have hit your thumb with an hammer or stubbed your toe, what do you do?", my mum said "Well, i'll probably scream and cry", my doctor then said to my mum "Right, well if you had that pain constantly, what would you do?", my mum said "Well, i'll probably get used to it and it wont seem quite as bad", my doctor then said "Exactly, Alison has been in pain for that long that her body has sort of built up a tolerance to it as it is physically impossible to spend every minute of every day, screaming in pain". It really made sense to my mum and I think it helped her quite a lot.
Working etc: I am a full time student and am at uni. It Is INCREDIBLY tough. It took me 3 years to get back into education because of learning to deal with fatigue and pain etc. Studying is really difficult due to problems with concentration, pain etc. However, I am on course for a high 2:1 or a first. I'm studying Psychology and am in my third year. It is clear, however, that I will never be able to work full time and will probaly have to work from home.
I really don't know how you are able to go to Uni full time. My RSD isn't as bad as yours and I am only able to go to school 4 hours a day every 3 days (12 hours a week) and that is staying in one place. You're an inspiration to me with how you manage to go to school. It's great that you're studying Psychology - that is something that I would like to do when i'm older - i'd love to specialise in the psychology of pain or be a Physiotherapist (PT).
Other symptoms: I have far less swelling and less dramatic colour changes but they are still obvious. I am much weaker and can't grip things anymore. I get very dramatic spasms. I get lots more internal symptoms now, high pulse, nausea, swallowing problems, postural hypotension, recurrent UTI's, stomach pain, chest pain etc. I also get much more dizziness and confusion and "fogs" as well as visual difficulties. I also struggle with my speech with getting words out right when the fatigue/ pain is bad. I find the fatigue has worsened over the years.
Treatments: The drs believe that there is nothing that can help me. Being english I can't gain access to the ketamine coma (though I'm trying!) instead the last option I have is the DBS - deep brain stimulation. I have decided I am going to have it but not until I have finished my degree. They are hoping it will reduce the RSD and the Dystonia by putting electrodes into my brain. mmm. I have been on over 100 different tablets/ infusions/ blocks etc. I currently take ketamine, dihydrocodeine, tramadol, ibuprofen, paracetemol, diazipam, baclofen, trihexyphenidryl and nortriptylene (and domperidone etc). These make some difference but I am never any where near pain free.
I'm sorry that the doctors don't believe they can do anything to help you
. I really hope that, should you decide to have the DBS, that it wont greatly inprove your spasms and get rid of some of your pain. It sounds really scary to me but I know you have tried everything else so it's your last option. I'm keeping you in my thoughts and please keep us updated when you can.
Yeh.. so at nearly 7 years of RSD I'm effectually a quadraplegic, I'm dependent for everything and I'm constantly in pain (burning, stabbing, exploding, cutting, lancing etc etc) but I am lucky to have an awesome boyfriend, friends and family and that I have the opportunity to study.
Lots of love
Rosie xxxxxxx