Hi

Hope you are all okish. In the UK we are having very bizzare weather at the moment and my pain/ spasms have gone out of control.

My left arm is now pointing sideways and down my back and REALLY hurts, my right has twisted more than normal whilst my legs have been kicking, twisting and generally misbehaving all day. Also I have lost all control of my neck and can't open my mouth or swallow at the moment and keep grimacing (unintentionally). I'm also getting really bad jerking spasms that I haven't had in months. Even lying flat the spasms are throwing me around the bed - almost like I have been electrocuted.

and it REALLY hurts - both the dystonia pain and the RSD pain. It's even worse than normal!

Does anyone know if there is a link between weather/ air pressure and RSD/ dystonia symptoms worsening?

and any ideas how to treat it? I have an exam on Tuesday and am really struggling with trying to study for it whilst my arms / legs flail or twist and the pain just makes concentration impossible.

(and I am embarrased to go out with an arm randomly sticking out and jerking everywhere.)

*and I seem to be in a visious cycle of severe spasms which set the RSD of because the jerky spasms normally involve my limbs flailing/ twisting, which makes the pain far worse - which sets off more spasms...*

Thanks
Frogga xxxx

PS I already take muscle relaxants - diazipam, benzhexol, baclofen and something else but I can't remeber it - begins with t.

Hi Rosie,

OMG, what are you going through, you poor girl! I do hope you're doing better, I wish I had some suggestions. Keep as warm as you can, obviously, perhaps heating pads/ electric blanket?

Not so long ago there was a thread about barometric pressure (Ada/dreambeliever's post?) - I think everyone agreed it made a difference. Makes a difference to me too...how are the (sorry, I'll say it quietly) exams going?

Take care, please, soft hugs,
all the best

http://sci.rutgers.edu/forum/showthread.php?t=23602

I have had stomach problems my whole life. I am wondering if this plays a role. Hugs, Roz

Hi is no question the barometric pressure cause flare ups. Major ones. I suffer so badly here in florida in the summer with the thunderstorms every afternoon that we had to leave and go up north. I could not take the additonal pain and endless flareups. When I got up north , pain level dropped and the frequency of flareups dropped to 20 %- huge difference. GOd willing I will never spend another summer in Florida. Just too too painful.

rosie,

the involuntary grimacing is a side effect of several meds (been there, done, that!).......don't know about all the rest of it, but i know that the dyskinesia can become permanent, so u might want to check with your doc or pharmacist about it.....and it can happen after being on a med for a long time, it doesn't have to be a new med.

hope the exam goes well in spite of everything else going on right now.

liz

Hi Frogga,

Yes, barametric pressure gets to me, also!

What liz said about meds makes sense! I know I've had so many of those types of reactions to meds myself. I don't think I've ever heard of RSD causing some of the symptoms you wrote about. But, of course, there are so many different reactions in everyone.

I'm sorry! It sounds like you must be absolutely miserable! Keep us posted.

Denise

My physical therapist mentioned this to me... he thinks the weather does affect my pain levels on some days. He said that the weather affects people with joint problems, maybe that is so with RSD patients/ nerve pain?!

Heya

Thankyou! Sorry it has taken so long to get back - struggling a bit.

Well - I quadrupled the dose of my anti-spasmodics/ muscle relaxants and mixed them with alcohol yesterday- and my spasms have calmed down a bit - am at a similar level to that before the dystonia went stupid. Unfortunatly back on bed rest - but hey - at least all my limbs are facing in vaguelly the right direction. (pushed myself too hard for the exam and suffering for it now).

It is VERY cold here and snowing and the pressure has gone totally haywire - so I am planning on staying cuddled up in my lovely warm bed, with fleecy PJs, covers, and heater for a couple of days until it heats up abit here! (thanks Artist!! and inhishands!!)

Roz - thanks! that does sound alot like me - and I think it's associated with dystonia?

CZZ4 - hadn't thought of that (we don't get many thunderstorms here - but my pain always goes mad when we do get them). Glad going up north helped - does the cold really affect you? (or does it not snow much where you are? totally useless at US geography).

Liz - I am going to get the grimacing/ dys thingy checked out tomorrow - will let you know what happens.

Denise - I have RSD and dystonia and HMS and gosh knows what else - it is all abit of a mix of neurological and joint problems.. it can get pretty miserable when you are 21 and in university and have to live with this sort of pain and disability etc - but I suppose things continue.. (After all I have my boys)

Thanks so much everyone - don't feel quite as uniquelly bizzare now

Rosie xxxxxxx

Hello. I am writing to you b/c you live the closest to me and my family, and i am hoping you will be able to help us. my 12 yo granddaughter has been diagnosed with rsd and has gone to the institute of pittsburgh for a 2 wk stay for physical therapy 6 hr per day. the pain is gone from her hands and feet completely but the pain in her back remains. we are considering nerve blocks. who would you recommend as the best in the area to treat rsd? we are considering U of MD or JHH, please respond ASAP, she can hardly bear the pain any longer.

i thought i sent you a text/msg and ma not sure where it went. i am looking for some help or guidance for my newly diagnosed 12 yo granddaughter who cant hardly stand the pain any longer. her mother is now considering the nerve blocks and since you live the closest to us (Berlin PA & westminster, md) we are asking you, who in this general area would you consider the best specialist to treat rsd and would you consider either u of md or jhh? would appreciate a reply as soon as possible. thank you so much. joanne