[frogga]

Hi all,

I hope that you all had a merry Christmas! Well I know I've been quiet around here.

As I already mentioned I was in hospital because of the RSD/ Dystonia. I keep going into status dystonicus and had a fit which lasted several hours and could not be controlled at all. Apparently when I came round I was in agony from the RSD and they gave me 30mg morphine IV (bolus - so just pushed straight in) and it barely made a dent in my pain..

ever since I've just felt like my whole body is on fire. It's an effort to talk, I can barely eat, I can only sit for a couple of minutes at the moment and everything hurts so much I just have no idea what to do. I feel like I'm going mad. My arms have locked around my sides which puts pressure on my lungs making breathing hard. Yet again I'm stuck being unable to control my wheelchair and it being Christmas and me not being able to eat because my jaw is in spasm.

My boyfriend tries to understand the pain that I'm in but it's impossible to explain it and I just don't know what to do. I am just so fed up of pain and just don't know how to cope with this thing any longer. I just want it to go away and to wake up pain free. I could cope with being a quadraplegic if it meant that I could be pain free and not be dizzy, feel sick, feel my lungs and throat burn and my stomach, colon, kidneys etc just burn all the time as well as my whole body. Even my face and eyes burn...

I'm now on 120mg diazipam a day, 60mg morphine a day, 80mg dihydrocodeine four times a day, baclofen, ibuprofen, paracetemol, 200mg tramadol 4 x day and 100mg ketamine day and it just doesn't work. It just feels like everythings on fire. This is just so not fair... I'm 23.. I just want to be... normal.. or just in less pain.. every time I believe pain can't get worse.. and then it does... HELP!!

Sorry.. I just need someone to understand because no one does. They just think if I tried harder to overcome the pain then I'd be able to manage more... it's just not like that.

Tons of love

Rosie xxxxxxxxxxxxxxx

[angelrsd]

rosie iam so sorry that you are having a horrible time i am like you 27 rsd for 11 yrs and it full body like yours organs eyes everywhere i dont have dystonis but slue of other things thanks to rsd. i have been having horrible problems since the beggining of the month w/ rsd had to have surgery appendix almost ruptured had no choice and now rsd is horrible .please try to look forwrd it does get better at least less than what it is now . im sorry that its so hard right i will think of you and keep you in my prayers
stay strong. one other question have you ever tried fentnly for your pain i cant take morphine due to being allergic. iahve a pump like morphine but fentnly in it.. it takes alot of it but it helps

[lostmary]

Rosie,

Aw honey, I'm so sorry it has gotten so much worse for you. I wish there was something to say to make it better, but I know there isn't. I wish you could get to Germany for the Ketamine treatment. Is there any chance it could happen? what are your drs. thinking of doing next? You know I'm always here for you.

Hugs

Mary

[ali12]

Oh Rosie, my heart aches for you, it truly does. I just hate that you are having to deal with all of this and SO wish that there was some way I could wave a magic wand and make things all better but I know there isn't unfortunately. I just hate that you are having to deal with all of this ... you don't deserve to go through any of this, you are the best friend anyone could ever wish for and are always there to help others when they need something even though you are going through a lot yourself

Please know that we are all here for you and anytime you need a shoulder to lean on, we will be here for you because we DO understand! I really hope that things get better for you soon and that your doctors find something that can help you

All my love and if you need anything, I am here for you!

[coachV]

rosie,

i wish i could offer some serious help, but i have nothing like that to offer.....i just want u to know that i'm so very sorry to hear that u r having such an awful time of it.......you've fought valiantly against this monster and deserve better results than you're getting.

i hope something changes for the better - and soon - for u.

all the best,
liz

[jenno]

Hi Rosie,
I want to share a recent experience in case it might be of help. My daughter has RSD that we have been able to keep under control with hyperbarics ... that is until about three months ago when she started having terrible burning in her stomach that was not responding to these treatments. Last week she developed a stomach virus and ended up in the emergency room because of the horrible pain. When we left they gave her a medication, Bentyl, which is a drug used for irritable bowel. Surprisingly it stopped the burning pain that we had not been able to control for the past several months. My other daughter is a pharmacy student, and she said that this med works thru the sympathetic nervous system (often thought to be involved in RSD). Just thought you might ask your doc about this med if you have not already tried it.
Best wishes,
Jeanne

[fmichael]

Dear Rosie -

Knowing how much you hate hospital, I can only imagine how difficult it's been for you of late. I wish that I too could offer a magic remedy. I guess the only thing that come to mind is the DBS you've written about before. Perhaps now would be the time to consider it.

much love,
Mike

[screwballpookie]

Dearest Rosie,
I am so sorry that you are going through this pain. I wish I could take yours, mine and everybody elses pain away. I think that everybody wishes they could help you in some way shape or form, but unfortunately there isn't much we can do about this horrific monster. Again I am so sorry for your pain and my prayers are with you.

Sincerely,
Tracy(screwballpookie)

[loretta]

Hi Rosie,

I want your pain to go away too, and everyone else that has RSD and all the painful disorders. Pain just wears and wears on you doesn't it. I hope you are better and able to move your arms when you read this message. I haven't looked up your meds yet, as I know some of the names are different here in US, but same med. One that I'm on that has really helped me keep my nervous system calmer is Lorazepam 2mg. 3 x day. It's an anti-anxiety med. I have full-body, generalized, for 12 years now.

I'm so sorry you are in this flare. Please know we do care. I've always enjoyed reading your messages. Take care, Loretta Jewell

[frogga]

Thankyou, all of you! I wish I could reply to each of you individually but at the moment that's just not possible but thankyou from all my heart.

It's pretty tough at the moment.. I've started having much more frequent chest spasms (at least one a day) which have been lasting several hours making it almost impossible to breathe.. apparently my lips go blue and my skin goes grey whilst they're happening.. I can't talk and all I can concentrate on is trying to breathe.. my mother (who hates hospitals even more than I do! even though she's a nurse) actually considered calling an ambulance which has got to be a first.. (considering she just surrounds me with pillows/ soft stuff when I fit and then apparently leaves the room).

James is staying with me for the Christmas holidays (yay!) which is lovely and he's been brilliant. I still cannot believe what a blessing he is - for those of you who don't know he's my boyfriend. He's there for me 100% and over the last couple of weeks has been there to wipe the tears away, try and make me laugh and just generally being a darling.

The pain is just unbelievable. Because my arms are stuck across my chest my right knuckles/ finger joints are being forced into the crook of my left elbow with my right wrist twisted inwards whilst my left arm locks under my right and into my right elbow crook. The spasms are so strong that they are bruising my chest, knuckles/ hands and my arms. Also my shoulders have locked which is just SO uncomfortable! I can't sleep, I can't think or talk straight. My eyes are burning and the double vision is just so irritating when you're trying to work (yes, I have work due in over the holidays). It just feels like I've got knives being stabbed into me, like my bones are set on fire, like my skin is on fire and going to explode... I'm just so fed up of burning and stabbing and to add it all I've got the RSD headache which keeps coming and going and is just a nightmare..

I sometimes wish I lived in the US where there is at least some effort to treat RSD and dystonia. Other than the DBS the only things I'm offered is botox, meds and that's about it.. they'd rather pay for full time live in carers, electric wheelchairs, hoists, wheelchair adapted vans and all of that than something like the ketamine coma which has the possibility of getting me well again.. it just seems so unfair! my PCP (GP) will no longer try any meds as they're too scared to try anything, (oh, RSD Angel, I used to be on fentanyl but even the highest dose made very limited difference to me so I had to stop taking it and it's so expensive the UK dr's won't pay for it) I am just HOPING and PRAYING that my new pain dr is going to help me... it's my hope and it's keeping me going.

I'm seriously considering having a year out of uni and having the DBS... this may sound really melodramatic but I just worry about how much worse it's possible for me to get. I can't eat.. I spend several hours a day fitting or struggling to breathe, I can't move and I'm always in agony.. I just feel I need to do something..

I guess it's just Christmas/ New Year and it's just got to me that I couldn't even open my Christmas presents myself...

Thankyou, all of you, and sorry for complaining so much!!!

Much love and pain free hugs to you all..

Rosie xxxxxxxx