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 Jeanne

Is Bentyl the same as Benadryl?? In which case I've tried it with no luck but I will look up Bentyl and discuss it with my dr on the 16th...

Hope your daughter is doing ok

love

rosie xxxx

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

yes i get these spams its like your whole chest is caveing in i also have ventrictular tackycardia and fibro .. i have been told that its a mixtured of the fibro rsd and heart problems but i have not found anything in 10 years that makes it go away or any less painful . im very sorry that you re goin thro this the best thing that i can say is just concentrate on breathing as slow as you. so sorry that is happening

Hi Rosie,

Bentyl is an antispasmodic drug used to treat irritable bowel. As I think I mentioned earlier, Sarah did not recognize that she was having spasms in her stomach but had horrible, burning pain that never went away. Typically she uses hyperbarics for her RSD pain, but this burning pain was not responding to treatments. Within a day of starting the Bentyl the burning stopped and she felt better than she had in months.

Jeanne

Hi Jeanne

I will definetly check this out!!

many thanks

Rosie

PS are you in the US or the UK?? and how old is your daughter??

Dear Rosie,

How are your VITALS, have you had an ECHO done? You are having chest spasms right?

Lave ya, Roz xoxo