Chest spasms
 

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:hug:.

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:hug:!

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 :hug:

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

Bentyl for Spasms
 

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

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

Bentyl for Spasms
 

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

are you taking Lyrica?
 

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.

Mrs. D,

With all due respect.

My SX are and were CHEST SPASMS, No Lyrica

EAT Healthy as well, lungs are clear.

Here are the impressions of my ECHO.

1.Normal LV size good wall montion. Ejection fraction is 70%
2.Diastolic dysfunction of the left ventricle
3.Sclerotic miral value annulus with trace mitral regurgitation
4.Trace aortic regurgitation
5.Trace tricuspid regurgitation

Even some of my EKG's were normal. I do NOT want Rosie's heart to end up like mine.

Much Love, Roz

Mrs. D,

You also brought up regardless of the cause, well the MD's getting to the cause is the PROBLEM. How could they help otherwise???

I had Endocarditis.

Blood work is clear for BARTONELLA but thats what I have. I have been on antibiotics for the last 1 1/2 years, at times the atomic bomb.

A huge problem is they just test for a couple strains when their are hundreds.

What are your thoughts?????

Much Love, Roz

Up worried

What antibiotics?
 

Long term antibiotics are nutrient depleters. I have a book that lists most of them.

If you want privacy PM me the list and I'll look them up and advise you. Nutrient depletion is a huge cause of negative side effects. By managing that you can usually still stay on the treatments. But many drop out, when things could be fixed simply.

So PM me your drug list and I'll look them for you.

Dear Mrs. D

I do hope these lines find you doing well.

I got RSD and Endocarditis from untreated Lyme & Company (co-infections).

I am very thankful to be alive.

Their is alot of controversy about Lyme, but the co infection Bartonella is what caused the heart damage I have. I only wish I would of gotten antibiotics sooner.

I would be running about now.

I just take tablets now nearly off of them, by the grace of GOD.

My RSD pain is nearly gone and my heart is doing much better.

I am concerned about Rosie. Much Love, Roz