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

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??

Hi Rosie,
We live in the U.S. Sarah was diagnosed four years ago this month and is now 17. Overall, she does very well considering that she has RSD. This recent 3-month pain flare was particulary scary as it was the first time since she started hyperbarics 2 years ago that we were not able to stop her pain. I find it so amazing that once she received the right medicine (Bentyl), the pain stopped. It is so frustrating to realize that help can be so close and yet doctors cannot connect the dots.
I pray that someday very, very soon someone will find a way to help you too. Please stay strong and never stop believing that can happen.
Love,
Jeanne

Dear Rosie,

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

Lave ya, Roz xoxo

Hi Roz

Come on! I live in the UK they do NOTHING. they admit I need scans and tests but do they bother?

love ya xxxx

My Dear Mate,

It is the Brit.. in me that has made me strong. Hold on a few I have to come up with some paperwork.

My Dear Rosie,

They need to rule out ENDOCARDITIS.

My pain levels are very low but I am still very weak, or I would hit Heathrow airport right now. Take you to a clinic, and make sure they did their several pages of reports, to get the help you deserve.

Part of the problem is alot of the English researchers design the equipment, and sell it to the STATES. Engalnd can NOT afford all the equipment for themselves.

But alot of people in the States do not even get any health care at all.

You need an ECHO. Much Love, Roz

There are patients who report breathing problems on Lyrica.
If you are taking this drug you should report this to your doctor ASAP.

If you feel spasms in the chest wall, try stomach breathing.
This does not use the chest as much.

Some people get spasms when they are low in dietary magnesium. If you do not eat whole foods, esp nuts, or beans, you may need a magnesium supplement.

See my magnesium thread in the vitamin forum.

Calcium causes muscle contraction, (and pain conduction at the NMDA receptors), magnesium is responsible for relaxation and also blocks NMDA receptors to a certain extent.

This symptom should be reported to the doctor, regardless of the cause.