[gibbrn]

ok officially have the new diagnosis of chronic pain syndrome or as the amazing pain doc called it CRPS......need to do more research and find out more.....gonna have nerve blocks on the 9th sooooooo looking forward to that scenario....not sarcastic..as ususal.......I am excited to have a few answers and get a real doc who treats you like a human not a money making machine!!!!!!!!!!!!!!! I am soooooooooh happy to have met him and will recommend him to all who are in the Toronto area in Canada PM me

he did a great exam and then the dx with also neuropatic pain added in the mix......I am still convinced tos......but hey what the hell do I know.....I am now thinking pec syndrome....hmmmmm as most who get tos get the pec syndrome. so hi ho hi ho it's off to nerve blocks I go!!!

He will do the tsn ....transcapular nerve......and the cervical paravertrebral one.......and trigger point injections as well.....so any input guys?

I am also told to read "Managing pain before it manages you" by margaret a caudill.....she has phd and is supposed to be good book......any input there either guys??????

love to hear from you all...or some .....or at least one of you on opinions and input!!!!
Thanks all
hugs and prayers,
Victoira

[fareastY]

Hi,
You must have checked this site but in case if you haven't.
http://www.rsdfoundation.org/en/index.html

Can't think of anything (it's almost my bed time).
If I find something useful, I'll let you know.

Yasuko

[LisaM]

You may want to poke your head in the RSD forum in this site. Lots of great ppl ther (like ME! LOL!).

I'd much rather have TOS to be honest. TOS is fixable. Also, if you pop on over there and tell them WHERE he things your crps is, they can tell you wewhere he should be dong the blocks. I've never heard f those areas, but my RSD is in the upper extremeties. I'm assuming yours is too since you had a TOS problem. But it doesn't make sense.

Hugs
LisaM

[Jomar]

I think I read that book - the title sounds familiar.
I liked this one better
The Pain Cure
by Dharma Singh Khalsa , MD with Cameron Stauth
The proven Medical Program that helps end your Chronic Pain

What i read so far is about different levels of chronic pain and how it creates it's own cycle in the brain, spasms, referred pain- like headaches, TMJ, sinus problems, ect.

Pg 33- "chronic pain syndrome is characterized by physical inactivity, inadequate sleep, depression, poor nutrition, fear, anxiety, reliance on medications, and mental lethargy...."these traits are almost certain to lock in- and amplify- pain signals that have become engraved upon the nervous system."

She advocates nutritional therapy, physical therapy, medication changes{ to natural,homeopathic and herbs}and mental and spiritual pain control

It may not work for all completely - but maybe some it will help.

[HopeLivesHere]

I'm so sorry. That is the worst news I've heard in days.

But there is always hope.

Stellate Ganglion Blocks are your best chance of putting this into remission if done RIGHT AWAY.

They are done is sets. Check it out at
http://www.reddinganesthesia.com/SGB%20FAQs.htm

Take care and keep us updated please.

Hope

[gibbrn]

Hi guys,

Thanks for all your input....can't wait to get the nerve blocks...in a lot of pain today!!!!! I want to get this delt with asap....I am not happy dealing with pain 8/10. I would much rather have 3/10 can function on that....but now I am doing my ironing....HATE ironing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ! oh well life is rough isn't it. I do wish that thursday would come faster then ever and not just for mcsteamy, mcdreamy or izzy!!!!!!!

take care all,
Victoria

[DDayMBB]

Hi Victoria,
I do have Manageing pain, she stresses to put an end to pain, before pain puts an end to you! The only thing, I really found helpful is in chapter three.... suggestions on relation and breathing techniques!
Also CRPS, I have been Dx ed with this and from what I learned is that some doctors calling "RSD" use these terms instead... that is what I have been told anyway. Dr Togut does a wonderful job with his "Trigger Point" injections, he uses Marcaine due to the longevity of the medication and when you are in a major flare this seems to quell the pain within minutes! Do not get me wrong, I have been stuck in one sitting up to 11 times, though the pain is worth the gain. Once you receive them make sure to take it easy even though you may seem like "super man/wonder woman", but to make it last I suugest going home taking a nice HOT bath and vegetate the rest of the day... let us know how you make out
Mark-n-Goober

[flippnout]

Hi Victoria,
hope to see you on the RSD site, I have CRPS (RSD) and TOS, had decompression surgery and a sympathectomy done at the same time, I think my CRPS has spread and too early to say if I am better from surgery......

[beth]

Vic,

I really am so sorry, I hate to hear anyone get this diagnosis. But I would suggest having another discussion with the Dr to clarify if he is definitely saying you have RSD, which is the older and more commonly used term for CRPS - Complex Regional Pain Syndrome.

If that IS the case, the first thing that should be done is stellate ganglion blocks - these are done both for diagnostic reasons and also because, if done early enough , a series of these blocks can sometimes put RSD into remission. It's standard treatment for RSD, and if he isn't knowledgeable about treating RSD patients, you need to be referred to a Dr who is. It's REALLY important! Teaching and university hospitals are most likely to have Drs experienced with conditions like this, while other Drs rarely see them in their entire years of practice.

The best Drs will offer lots of options, continue to try things, keep current on research, while others will shortly throw up their hands, say they've done all they can and just maintain you on pain meds. The former are the type you want to find, I've been with both and am glad to say I am finally with a REAL PM Dr.

Please talk to your Dr, ask if by CPRS he means RSD, and if so, will you be getting the Stellate Ganglion Blocks soon, ok?

I don't have the web address but RSDHope is a great site, tons of resources. The RSD forum here is also very active and helpful. And quite a few of us here also have RSD, unfortunately, you're NOT alone in this - please reach out, ask questions, vent. You know there's always someone here ready with a listening ear or a shoulder to (virtually) lean on.

Keep hanging on - stress does make it a lot worse, staying calm can keep it less active. For me, staying warm is also key, since my "thermostat" is broken. The SCS seems to be doing an amazing job of relieving the worst of the RSD pain, which has always been in my right hand and forearm. Both arms, fingertip-to-shoulder feel pretty good, as a matter of fact! Only 5 more weeks of not bending, twisting, reaching or lifting and I'm good-to-go! And for a special treat, I'm allowed my first shower today, a week after surgery- whoo boy, am I ready for it

((((e-hugs)))), beth

[gibbrn]

Wow what amazing support guys thanks

Don't think dx is correct......crps is supposedly now a catch all for rsd and crps 1 and 2 so he thinks I have this 1 with neuropathic pain. I still think is muscle pain due to tears in either tendons or major muscle damage dont have the allodynia or hyperesthestia...sp....so??? do get vasc and neuro changes.....tight muscles blocking the nerves and vessels....??? just my thoughts as a nurse.......but what the hell do I know

I had bupivicaine injected about 8 injections no pain.....just tiny pricks in skin but felt it later........he was good and is an amazing doctor I like him and he does know what he is talking aobuta....tested him...you guys know what I am like....lol

so your input?/???

anything will help
thanks all for your hugs and prayers......oh and I don't think they worked???? I guess if I have to ask they didnt????

hugs back and the prayers
Victoria