Donny,

That was a great article and something I had not read nor heard of before! I will be printing it up and taking it with me to my next appt. with p.m. I'm not sure how long I've really had this or what stage I'm in but it can't hurt to try it! Did you bring that study with you to your appt. by any chance? How many pain management docs have you seen? I am on my third one and have only been diagnosed since March and am presently thinking about seeing my fourth. I have not had much luck finding someone who wants to treat me the way I want to be treated Sounds like you are going through the same crap!

I hope your therapy goes well. I know I just said this about my p.m. but I am being evaluated by my fourth physical therapist next week. I really hope this one has a clue. Can you tell I'm a difficult patient? Take care, good luck and thanks again, jenny

hi jenny,
could i ask where you heard about these supplements? i am always so interested in the more natural ways of dealing with RSD.
and deb,
you sound very sad. it made me feel a need to just reach over the internet and find you. why don't you chat more with me or others? it could help. do you go to therapy? it helps so much, not at first, but as you keep going you can work out a way to cope and even be happy with yourself as you go through all this.
joan

Hi Joan,

Thank you for your kind words they are very much appreciated! I guess I am sad not only about the pain but also everything else that has happened since my injury over three years ago. I have been treated very badly by many dr's, therapists, work comp etc. I'm sure I'm not the only one but it is sometimes difficult to not let it eat you up inside. I have scheduled an appointment for counseling. Due to the fact that I have lost my insurance and work comp is refusing to pay for my care I had to go on medicaid which means I had to find a shrink who would accept the medical card and that took a while and then it took another three months to get into her for an appt....I'm hoping it will help

As far as finding supplements that I am currently taking I can honestly tell you I have tried to read and research everything I could get my hands on. The problem is I'm very good at understanding what I'm reading, not so good at explaining it to others and I don't know how to take a link and move it to another place, such as this forum I will do my best right now for you to explain what I'm taking and why....hope I'm not too long winded.

First I went to the PARC website and researched the protocol for RSD tx in the Netherlands(because they are way more advanced than we are I'm afraid) It is actually against the law there to not prescribe dmso cream for pt.s with rsd! Unfortunately a script is required for that one, so I haven't tried yet although my pm said he'll look into it! Anyway they also have done extensive studies and determined that an amino acid that is also a free radical scavenger called N-acetyl cysteine helps decrease pain substantially in pts with rsd. I am also taking d,l phenylalanine which is also an amino acid. It worksby protecting our endorphins and helps us fight pain and depression. Has also been proven to be effective against painful inflammation. It may work by up-regulating what is called the "'endogenous **** gesia sysem" EAS, a neural pathway that occurs in a part of the spinal column. when stimulated by chronic pain or therapeutic measures such as opioids or acupuncture the EAS suppresses activation of pain-receptive nerves in the spinal column and thereby alleviates pain. It is not a drug and does not work directly against pain. Instead it acts as an endorphin shield battling pain indirectly by helping the body's built-in pain control system grow more powerful. the pain blocking power actually grows stronger with time! also works with other meds to make them stronger and does all of this with no side effects( I am writing ver batem out of my disease and prevention book from the Life Extension Foundation) What about chronic pain that does not respond to standard meds, therapy or surgery? Phenylalanine has ample time to begin working in such cases, so why is it not used more? Because it is not profitable for drug companies!! I also take other vitamins and supplements that are directly linked to pain relief, obviously the explanations are long winded but here is the rest of my list... if you would like an explanation for each one I will be happy to give it but I don't want to waste your time, either, so here goes...

Vit B-1(thiamin)25mg-very effective for neuropathic pain
vit b-3 - good for arthritic type pain and mobility of joints
vit b-6 100mg-inflammation and arthritic type pain
b-12 (methylcobalamin) at least 5mg sublingual a day-
vit c- 2500mg a day-natural shield against pain and an anti-oxidant
vit e- 400iu day- works with endorphins and an anti-oxidant
super gla/dha 1000mg day-suppress pro-inflammatory cytokines
vit k.-10mg daily-helps reduce level of Il-6, a pro-inflammatory messenger and also helps with osteoperosis
carnosine-1000mg day-anti-inflam and protects against glycoslyation
Evening primrose oil-2600mg improves nerve conduction and inhibits inflam.
alpha-lipoic acid-1000mg day,
acetyl L-carnate 2000mg daily-both of these supplements are to enhance neuronal energy metabolism and provide protection against free radicals.
zinc-50mg again improved neuronal conduction
Gee, have i left anything out? I know this sounds like a lot of pills but most of them come in combinations kind of like a multi-vitamin! whew, you probably think I'm nuts...but it all does seem to be helping
I'd be happy to chat anytime you like, I am a shy person by nature and honestly there are people with some really strong opinions here and I don't want to rock the boat at all or upset anyone.... does that make sense I also go to a chiropractor and a homeopath and both have been beneficial for me in addition to the standard pain management doc. I hope I haven't bored you to tears, Joan, and thanks again for your kindness, it always appreciated! Hope you are having a comfortable day, jenny

don't know how to edit yet either, the hug is obviously supposed to be at the bottom of the page, the word it is interrupting is analgesi,... jen

Deb, I know a lady who is 49, (I'm 48 and single)btw

that struggled with RSD for 9 years, She has been in remission for approx 18 months

bottom line She embraced life and gave up oxycontin in fact She isn't taking anything

She also left the jackass She'd been living with, the Guy was constantly giving her a hard time over the meds

Obviously She WAS IN PAIN, but She embraced that pain and through simple mind over matter(and a lot of love and support from freinds and family) Her symptoms have subsided, granted she has had two minor flair ups after over doing it physically
wierd thing is I'm having to deal with RSD now myself


think positive and get outside, you have to use it or you'll lose it

last night I happened to do an epsom salt soak on rsd hand
read about it on the hoosmand page, Linmarie must have been typing whilst I was Soaking,.........................DMSO THIS MORNING!


Keep sharing everyone there is hope

I was diagnosed just thee weeks after my fracture around the end of april 07
so it's been 16-17 weeks, and only I've seen one pain mgmnt Dr.
all he did was refill my tramadol prescription, and prescribe Elavil

all of the Dr.'s Ive seen have all been very young and very closed minded. I did bring in article in initially, the first day at the university, the artile was about ischemic contracture, the Dr wouldn't even look at it long enough to read the title

I swear they are out to kill me

listen, pain mngmnt and physical thereapists IMO are the wrong choice they all want to do stellate ganglion blocks

I'm seriuosly thinking of seeing a rheumitologist

if you want someone to talk to you can call me anytime and that goes for any of you

use the private message feature and I'll send you my number
Donny

Donny,

You truly have a way with words that makes me laugh! I too feel like they are all secretly conspiritng against me and my quest for a cure/remission. Seriously, though, your best bet might be finding yourself a different doc, someone a little more experienced and mature than say...doogie houser?

I've had one stellate ganglion block and that was enough for me, thank you very much!! It was done in an office without the use of fluoroscopy! Was one of the most excruciating moments of my llife!! I swear that man dug around in my neck for about half an hour and hit the nerve to my hand twice and stilll didn't manage to get it in the right spot!

I have since decided that I will look for alternative treatments and thus far that has worked for me. I doubt that I'll ever be completely 100% free of this crap but at least I don't feel like dying anymore (even though I think they are still trying to kill me!)

I was just informed today that I have to go to another "independant" medical exam for work comp at the end of the month and I just can't wait to see what they have in store for me....oh boy!

Lots of luck, Donny
jen p.s. what state do you hail from?

Oh God W.C. cases are absolutely a lost cause, pay into it forever and try to collect..................... fat chance

My sister went round for round same as You, rotator cuff they waited till She had nothing else to lose and threw Her a bone

ATTORNEY TOOK HIS cut,AND SHE WAS LEFT WITH LESS THAN 12 MONTHS SALARY 5 years of agony not to mention being followed, for less than a years wages

all the research I've done has had me come across several W.C. abstracts on google, it's really not worth the aggrevation better off getting yourself mentally and physically fit I truly believe ball breaking cardiovascular excersize is the way out of this dark dark tunnel we've gotten ourselves into

seems a lot us were smokers, thank God I quit that two years ago
btw I was a soda pop junky too, quit the day I got the cast actually started drinking diet sprite, till I read about aspartame that $hit'll kill ya

buck up, and reach out to Your Kids.............. my 11 year old Son's love keeps me striving to get healthy

ps GOOD LUCK with WC ............. no good Bastages Donny

I'm in Huntington Beach California

Donny,

Did they really follow your sister! That is truly insane !!! I can honestly say I haven't been waiting for them to give me the OK to see doctors, specialists, etc. but when they tell you to go to an IME, FCE or any other kind of B.S. I have no choice but to go....not holding my breath for a good outcome.

It's interesting that you bring up smoking as a possible link to this disease, I am a smoker, unfortunately, and once I started reading about free radical scavengers and thinking about the vasoconstriction, hypoxia, mottling etc. that was occurring I wondered if that might have played a role in it. I don't know anybody else personally who has this though and haven't seen it discussed in any of the research papers, etc. that I have read.

My 11 yr. old also inspires me to get well, actually she just kind of inspires me. Why do you think cardio is the key? If you don't mind me asking... I personally have been seriously considering hbot, any thoughts?

Well, have a good night, hope your sister is doing better and trust me I know what farging bastages the w/c people are, I have been going through this with them for 3yrs. 4mos and 2wks. Truly sucks out loud!! jenny

Absolutely, they videotaped Her as well

as for smoking, it hardens and narrows the arteries anyone serious about improving their quality of life/healing must give up smoking (cigarettes too) Donny


I'm off to occupational therapy evaluation .................and very nervous