Hey

For all of you that don't know me - Welcome! I'm Frogga, I'm 22 and have full body RSD from a fall when I was 16 and now have Secondary Generalised Dystonia and HMS all of which have been really attacking me for the last couple of months, probaly since January when I started passing out all the time up until, well, now really.

I went quiet as I haven't been well enough to be on the computer in a long time. It's odd though going back on and seeing how time seems to have flown by. The baclofen trial was an absolute farce - it made me worse not better and took a long time to recover from it. I was lying in bed working a couple of weeks before the trial and my kneecap dislocated because of spasm and also pulled my hip out damaging my pelvis, hip, knee and also my foot - don't ask how!! I've got no idea.. and cos they couldn't get it to go back had months of having my legs bandaged together, botox and anything else they could come up with to try and get my stupid legs to behave slighty better. Oh well. In the end mums brutality against spasms worrked so my right leg is no longer twisted behind me when I'm in my wheelchair.

So... home now.. got the summer to recover before I start my placement and sit all my exams (missed them all through being in hospital etc). No closer to getting anywhere. Ketamine coma... every time I get hopeful it's going to happen it all falls apart so trying again to get that sorted. Been referred to a specialist neurological service thing that is supposed to be awesome at both neurological rehabilitation and helping you deal with living with, ultimately, a degnerative neurological disease (As well as RSD I also have the dystonia etc).

A question - I have RSD in my face and problems with swallowing, chewing, pain, sensitivity and the whole of my face feels like, like... like a mixture of toothache and earache just shooting through my face/ jaw/ neck every moment and where it's just so deeply painful that you can't explain it no matter what you try. I've tried heat, massage and chiropractor and it helped me feel more comfortable but it still hurts so much. I'm having to wear a snood to keep the hair off my neck and face as otherwise it burns so much from the fire but I'm fine, seriously.

Anyway... I'm around (ish) and it's so nice to be well enough to look at a computer and to be able to take interest in stuff that's going on again.. it's taken far too long.

much love to you all

Frogga xxxxxxxx (Rosie) xxxxxxx

I'm sorry your not feeling better,but its nice to see you on the boards again. I hope you have relief soon. Take Care hope you feel better soon.

Laraine

Hi Frogga

Sorry to hear you are in such pain! I don't know what to recommend but wondering what is holding up the ketamine tx for you?

It's nice to hear from you, I've been wondring how you have been doing.
I'm glad you're feeling a bit better than you had been- sounds very tough

Hi Frogga,

I'm so sorry to hear that you are in so much pain

It's nice to see you posting - i've really missed chatting with you. If you need me, I am here

Love
Alison

gentle soft hugs rosie. welcome back.

i know you have full body rsd, but that wouldn't rule out that something else is causing the face pain.

when you are able, take a look at our Trigeminal Neuralgia forum.
http://neurotalk.psychcentral.com/forum26.html

the pain you are describing is much like many there have.

praying for pain free days and nights.

Thanks very much everyone!
hope that you have all been doing ok.

Ketamine - my pain doctor doesn't think it will work - but then again he doesn't think anything ever is going to work and thus it is totally pointless for me to bother with it. My neurologist wants me to have DBS and if I'm that desperate for coma therapy then he will do it himself (yeh, right). Therefore I'm still trying to get referrals sorted so I can hopefully go to Germany. I have found a sponser for it who has agreed to pay for it if I get the ok. YAY!

What else? I've got the final plans for my extension at home - it will be great - my bedroom will be extended and have a bathroom added on so I can have a ceiling track hoist from my bed over the wheelchair, toilet and bath to stop people from having to pick me up all the time (I'm now over 6 foot! it's mad!!) I'm really looking forward to being able to have my bed in, well, a bedroom instead of in the sitting room!

I think I told you all that I have got my new car? It is so wonderful - it's a wheelchair accessible vehicle so I can stay in my electric wheelchair when we go out and it's been adapted so when I'm doing a bit better I will be able to drive it...and best of all it's a Chrysler Grand Voyager in black wwith tinted windows.. it's really great! (though as there are very few in the UK I do get a lot of stares and open mouths when I tell people it's mine! lol! oh well


Managed to break my finger The RSD has made some of the top joints in my fingers twist over to one side. We were attempting to straighten one of the tips and the whole thing snapped and I felt it crack. It's now about 3 times larger with huge bruises down it. I'm supposed to be wearing bandages and a spica (finger splint) but they are too painful and whenever I wear it the spasms in my finger gets worse and threaten to break the splint. Doh. Oh well.

I'm finding this pain really hard at the moment, it's eating away my whole life and ust generally driving me nuts.
Hope you are all ok

Love

Rosie xxxxxxx

It's great to see you back.

Now get better.

Hi, I'm new and read your posting. I love your attitude. I have RSD in my left hand, wrist, arm. It's doing better and I'm due for surgery soon for plate and pin removal for more flexibility and better circulation. Hang in there. I'll pray for you. Susie

I am so glad to hear that you are finally getting the extension done - i'm sure it will really help you!!

The new car looks great - I bet it's nice to get out and about with your friends now!!

I'm sorry to hear that you have fractured a finger - I hope it heals soon.

It was really nice talking to you yesterday. I hope you were able to get some sleep.

Love
Alison