Hi Tomcrps,
I am so sorry you have to feel the pain you are now feeling in your chest. Unfortunately, I have dealt with exactly what you are speaking about. I had a Lidocaine infusion several years ago and took Mexiletine afterwards for years. So I hardly felt the chest pains as you have described because of the Mexiletine. Last year I went off of it during my Ketamine infusion and about a month later had my first booster of ketamine. Well with each hour afterwards the chest pains grew so bad I thought for sure I was having a heart attack (and could not breathe either). Was ambulanced to hospital and all ekg's and bloodwork are normal??? It was strange but since that time I feel exactly as you do too. It feels like an elephant is sitting on your chest! And the burning pain is horrible. I agree. After about another month of this I went back to my holistic neurologist in horrible shape and worse than before ketamine. She has given me iv's of natural vitamins and minerals (RSDers need more than others esp the minerals). It is now a year next month of doing this iv vitamins and I can honestly say it is the only thing (besides God) that has helped me out. I have gotten off ALL opiods (used them for over 5 years) about 3 months of doing so and have not had the bad burning pain as I did prior. What a Godsend it has been for me. I still have burning pain everwhere (full-body for years) and when I am real tired or storm is coming in I have increased burning pain everywhere and joint pain more but nothing like it was before. I think you should try to find someone in your area that will do this iv of natural vitamins. I am headed there tomorrow and I am now doing it only once a month now. It is so great and natural for your body. I would never have the ketamine done again because it changed my body in bad ways (but it did lower the pain...but took alot out of me). I am almost off all medicine now and with each month feel much better. It was a horrible experience I pray no one else ever goes through. Good luck with everything and keep us informed of your health. Two things I have noticed about the burning pain is: 1-meditation and breathing do help to lower the pain. It takes practice and lots of time but at times is the only thing to help me lower the pain. 2-Trying to stop sugar helps keep some of the pain away too. It was hard for me to do as once in awhile I have a sweet tooth but I did notice lower pain when I stopped eating my sweets and tried to stay away from sugary foods.

KittyC said "I wish I had a doctor like Dr. Schwartzman on hand so I can find the perfect treatment for my RSD." I had to chuckle at that one (no disrespect to you) as I have been to over 40 or so doctors since this "journey" began and I can honestly say there is no perfect treatment for rsd. It is up to the patient to find what works for their own body and to find a compassionate doctor to help you through your journey. And a good dose of humor and lots of prayer helps too:.)
Take care,
kathy d

Kathy,
What kind of bad experiences did you have after ketamine infusion? please share your experiences with us.
Thanks

Ballerina,
May i ask what kind of insurance do you have which paid for your ketamine infusion?
Thanks.

Blue Cross Blue Shield and Chartis-Both would pay in full but I cannot have the treatment due ti allergy.

Hi, ballerina:

I mentioned I had documents from Dr. Schwartzman, but unfortunately, this wonderful doctor is not my doctor, so I am not in good hands. The only doctor on Earth who WAS willing to help care for my RSD seems to be getting tired of me. I would not be surprised if, some day soon, he tells me he does not want to see me anymore. He was such a good doctor before and we got along so well, so I do not understand what happened...

Can you imagine what it would be like to have generalized internal chronic RSD without ANY medical care? What would happen to me? CPS sure would use that opportunity to take my two-year-old baby away. I am going to move out today and go I do not know where yet. I feel so sad ans shocked I just want to cry and cry and cry... I feel like I am sinking... :Sinking:

As regards Dr. S. I was referring to Keep Smilin. Sounds like you need to consider moving to a location that offers better treatment.

Dear Kitty,


After reading your post, I'm very concerned for you...Please, although Dr.S is not your Dr,. And you do not feel supported with your current Dr. And care...Please, take a very deep breath and know that you need to be strategic in your choices in deciding on your care...There are many Dr. 's out there with qualified backgrounds and knowledge with our disease...Please, log into Jim Brotch RSD/CRPS website for information...and past posts here supply a list of Dr.'s possibly in your area...but most of all my take home message is that of endurance, strength and love...know that we here are family and we care...do not sink...only move forward with a smile in your heart, as I know RSD can be trying and hopeless it is also a time for us to reach out and fight... Know that you are no way alone in your RSD struggle!!!

Talk to us! We care!!

Soft hugs!!

Kathy

CRSP in chest
 

I was told today by a neurologist that RSD does not spread to your lungs and that I have something affecting many "body Systems" and she could not help me. Is that code for, you don't have insurance and this is too big for me without it?
I thought OMG she thinks I'm wacked too! I had to pay to be insulted again!
So I started looking at the vascular issue instead of the lungs because I had this hyper dialated feeling in my lungs and a flushing up my neck and a moment of whoosiness . The burning in my mouth and lips too. Now it's in my chest wall, so along with "hot pants" I have "hot shirt" too, lol.
Anyways getting back on track, I found on, low and behold, "Wicca Pedia" (grin) the sympathetic nervous system and guess what it does? It dialates the bronchioles. I also found my constipation issue (before opiates) called digestive track peristalsis. The SNS affects organs functions, like pupil dialation, heart rate and force of contraction, renin secretion of the kidney and promotes ejaculation for starters.
Surley this neurologist had SNS 101? My blood pressure increase that too, as goose bumps and of course the famous fire and ice sensations.
BTW I can't chew gum sometimes because the mint makes me crazy lung dialated and my eyes water and nostrils burn like I stuffed vicks in them. I too have felt the icy vein syndrome, I thought I was nuts. Thank God this stuff waxes and wanes durning the day and I have some reprieve from the really ugly stuff.
What hasn't cooled off is the rage I feel towards a few doctors I've been dealing with, egotistic jerks. I really enjoy being treated like a child and a nut case by the educated elite in the medical community. I have lost a lot of respect for doctors lately. I sometimes wish I could wish this on them and then they would have a clue. They would be quick to act if they had to walk in my shoes for a while. Sorry for venting, I just flushed 400 bucks down the drain on doctors, like I have a money tree in the back yard. Tomorrow I'll go yank a couple hundred more off and go see another one.:eek:

Dear Numb,
I have shared my experience with ketamine in many previous postings and I don't want to bore everyone else with them. I believe you can do a search at the top of this page and put in ketamine treatment. You will find a wealth of info from everyone on this site. It took me close to four years to get the stuff and the last year before it was spent 3 times in court fighting work comp to get it. A nurse in the ICU ruined my entire treatment by allowing me to fall and hurt myself while under her "care." I was very close to death and the fall brought back the rsd burning pain about 1,000 times worst than what it ever was before the treatment (yeah if you can imagine that...it was horrible). The ketamine was working up until that point. The fall ruined my life and my family's too and left me unable to care for myself ready for a nursing home in my 40's. I am struggling each and every day to get back to where I was prior to the fall. Would not recommend it for fun.

KC1974--If you doctor denys you coverage maybe you should place a call to your local news and maybe someone will see it and be able to help you and your daughter. Being a parent is hard enough but when you add rsd to the mix it is a mess.

Jerie--said "I have lost a lot of respect for doctors lately. I sometimes wish I could wish this on them and then they would have a clue. They would be quick to act if they had to walk in my shoes for a while." I agree with you 100%!!! I have lost alot of respect for doctors as well esp in the last year. You know as well as I that if others walked in our shoes for even an hour they would be screaming to take it all away! They do not know how lucky they are to not have this mess. It affects so many aspects of our lives. But we have to be strong in order to not let it get the best of us. Can you send me a few bucks from your money tree out back lol. I liked that one. Gave me a good laugh tonight. I needed it.
Best to all. I pray for everyone on this site each night for better days and complete healing for all.
kathy d

Kitty,
Do you know a source I can use to give to my Dr about the ice water issue? I have bronchial dilation and ice water sensation all over even in my legs. It started in my chest. I wonder if this is indicative of another underlying vascular problem. I just had surgery 4 months ago on my foot and this is my latest symptom that is totally weird.
Jerie