Quick question...

do any of you have these???

it's not from my meds - they're worse when my pain is worse but they're not me hyperventilating etc.. you can actually feel (apparently) that the muscles are in spasm..

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 have dystonic storms and then apparently leaves the room).

If so what helps you?

much love

rosie xxxxx

Hi Rosie,

I am so very sorry that you are going through all of this - the spasms sound awful and they must be really scary for you and your mum.

I don't have spasms in the chest area but I often feel pretty short of breath as though it is hard to breathe and my Doctor said it was a symptom of the RSD and Fibromyalgia. That alone is really scary so I can't imagine how scary it must be having it to the extent that you have it!

I have a friend on another RSD forum in the US who has full-body RSD and has similar symptoms and problems to you (she has convulsions, fits, passes out, collapses etc etc). She is currently waiting to have a Ketamine Infusion and said she would love to speak to you if you wanted as she has never spoken to anyone else who has RSD like hers. If you want me to send you her email address, just let me know - she is really nice and so helpful!

I am so sorry that I can't help you that much but just wanted to let you know that I am thinking about you and hope and pray that you find something that will help you soon ... I hate that you are going through all of this!

All my love and pain-free

Some of the TOS members get chest spasms. Usually due to a nerve irritation {inter coastal} , trigger points, or as a reaction to muscle overuse.
For me it was the muscles bracing themselves after severe overuse.

Luckily my chiropractor knew what to do in my case.
Trigger point work, deep tissue mobilization, ultrasound, heat, adjustments...

hope you can find some help for it.

Yikes. How scary!! Here are some big hugs........

Dear Rosie -

Yes, I get chest spasms as well. I've been worked up for them in a number of ways, including multiple agiograms and an endoscopy. Even though both were normal, the best guess of the gastrointerologist is that I'm having a form of esophogeal spasms that dosdn't show up on the endoscopy, only because I wasn't having them at the time. Alternatively, they could be arterial spasm in the heart that didn't show up on the angiogram for the same reason.

In any event, they are well controlled - under either hypothesis - by nitroglycerin tablets, which act to dilate just about anything. It's certainly worth a try. In your case, where your lips are going blue, I would suspect either arterial or perhaps broncheal spasms, but that's just a guess. Have you by any chance been seen up by either a cadiologist or a pulmonologist?

BTW speaking of nitrates, there is at least one recently reported study showing that nitrates designed to combate erectile dysfunction by dilating blood flow "down there" may actually have a beneficial effect on CRPS. See, http://neurotalk.psychcentral.com/thread60772.html

much love as always,
Mike

Rosie you are lovely and very dear to me. Hang in their. Much Love, Roz

Hi Rosie,
Have you ever tried Bentyl. It is a drug used for spasms associated with Irritable Bowel (I have read that you have lots of burning in your stomach). We quite accidentally came to realize that this med stopped the constant abdominal burning my daughter was having. She has not been diagnosed with Irritable Bowel (she does have RSD) and never really recognized that she might be having spasms. She is now seeing her fifth g.i. specialist, but it was not until she ended up in the emergency room with a stomach virus that she was given Bentyl. Amazingly, she woke the next day feeling better than she had in months. Maybe you could ask your doctor if it might help your stomach burning and possibly your chest spasms too? Praying you find relief!!!
Jeanne

Hi Ali

How are you doing? Do any of the splints look helpful? I'd really like to talk to the girl in the US if you could give me her email!

Thanks!

Love and hugs

Rosie

xxxxxxx

thanks - really interesting - don't know if my drs would go for it though - they are the conservative of the conservatives (after taking me off baclofen and benzhexol because they weren't working my consultant put me straight back on them when I was admitted to hospital?!? go figure..but I actually see him on the 16th of this month!! (I know!!!!) So will discuss it with him and see what he says.. It's really annoying as the dystonia is now affecting my face and tongue. It's always worse at night. I haven't really been majorly worked up for things because in the UK they just don't bother.... just shove oxygen on you... say you probaly need oxygen at home and then because mum discharges me without permission of the drs it means they just don't bother with it. What a suprise!

I'm glad your chest spasms (whatever is causing them) are being kept under control

much love, as ever

Rosie xxxxx

Roz, how are you doing?? you are very dear to me too... haven't heard from you in FOREVER!! How did the IV therapy go? I haven't really been up to keeping up with NT as I haven't been well enough but do PM me and let me know how you're doing!!

Tons of love

Rosie