NeuroTalk Support Groups - Help... just can't take much more pain

Quote:

Originally Posted by frogga (Post 436157)

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

Rosie,

I am so very sorry that you are going through all of this right now, I so wish I could just wave a magic wand and make everything better for you but I know that isn't the case unfortunately.

I really don't know how you are able to do all that you do with having such bad RSD ... you're a true inspiration to me and I mean that from the very bottom of my heart!! I only go to School 3 days a week for 5 hours a day and that is hard enough, I can't even begin to imagine how you and others cope going to Uni or Work full-time - you're all inspirations to me and I look up to all of you!:hug:

I really hope that should you decide to give the DBS a try, that it will help you and make life a little bit easier for you. It isn't fair that you are having to go through all of this and it just seems SO unfair ... I really feel for you and others that are in the same situation.

I truly understand what you mean about sometimes wishing you lived in the US. They seem to have soo much more treatment options that we do over here and it can be pretty frustrating when someone suggests something but it isn't available on the NHS. My mum has mentioned so many different medications to my Pain Management Doctor that people in the US have suggested but some of the time, he just says that he has never heard of it before or that it isn't available on the NHS!! I was offered Botox by my Doctor but was told that because the nerve block caused me to lose my balance and co-ordination, it wasn't worth taking the risk and it would be a real issue trying to get the NHS to try and pay for it. At the moment, I am just having regular Physiotherapy and see my Pain Management Doctor, I am due to return back to GOSH for my leg casting in January but I honestly don't know if I want to go ... the thought of it just scares me so much!!

I truly hope and pray that you find something to ease some of your problems real soon, it hurts me knowing that you are in so much pain and it just isn't right:hug:. You have tried your hardest to get rid of this Monster (RSD) and to lead a "normal" life but something always has to go wrong no matter how much you try.

I am SO glad that you have your boyfriend there to support you, he sounds amazing and it makes all of the difference in the World having someone who actually tries to understand some of what we are going through and to help us. I honestly don't know what I would do with my mum!!

Please don't ever feel guilty for complaining, you have every right to and honestly, the whole time I have known you, you have hardly complained at all - you deserve a medal!!!! We are all here for you whenever you need a shoulder to lean on and always will be and if you want to talk, you know where I am!

Please keep us updated when you feel up to it and know that you are in both mine and my mums thoughts and we are sending you many pain-free hugs!