I used to play classical piano, the bass and 12 string guitars but had to switch to playing one handed piano so I can still enjoy music...
(Down but not out!!!)

In the past few months (maybe 6 or so) I have finally kicked the caffeine habit. It took a long time but I have been trying for several years to follow the 4 Fs diet and giving up my caffeine soda was really my biggest obstacle. I grew up drinking only Coca-Cola...no milk, no juice, no water...just Coke and the occasional cup of coffee (more when it's cold).

I have to say that I have felt a lot better since giving up the caffeine.

But I agree with everyone else...we all have to decide what is worth giving up and what is not. It's OUR lives and we have been forced to lose out on so much...we all deserve to have our guilty pleasures...whatever the cost. I know I choose to do lots of things that I know will cause me additional pain...but what I get out of them is worth a lot more to me.

Tessa, I got that coffee information from his site. I met and talked to Doctor Hooshmand 19 years ago and I am doing the four4"s. I went to a seminar in Maine and learned lots from him and what to expect from doctors that would not know about rsd. I was in bad shape 19 years ago and Doctor Hooshmand said he could definitely help me. The problem was we had to go to his hospital in Florida. We had no money. He has since retired but they still help RSD/CRPS patients.

The coffee thing coming from a neurologist that I have met and seen evidence of his knowledge and work and what information is in number one on that coffee list sold me but I still have a coffee every once in a while. It wasn't posted to "make" people stop, it is there to broaden the horizons of pain suffers. Information is not a command, it is subjective, we all see it different.

So Tessa I do follow the 4-4s and the 5cs. I am very pleased with the results as you are. I have not tried any other generic diets. I hope your day is going well and how are you doing today? Did it go as well as you hoped Tinkerbell? Go ahead-make my day. You sure made us laugh last night Tessa. I hope it is reciprocal . Hugs and compassion Tessa.

Tessa, I tried a quick reply and it sent me to a post, it is at the end or on page two. Good luck. The answer is yes and no.

Krow46,

That is great that you had a chance to meet Dr. Hooshmand - pretty sure many of us are a wee bit jealous about that . To bad that you weren't able to attend his treatment center. I totally understand the disappointment when location and finances impede the chance at treatment options. Shortly after my diagnosis I had an opportunity to be involved in a trial study for CRPS II but it was in Austria and finances and distance just weren't lining up for it to happen. I am grateful for the information that Dr. Hooshmand has made available on line including this topic.

I knew you posted it so that others could have the information and then do what they want with it. I've posted many of the same things.. knowledge is power and what works for one might not work for another whether it is caffeine intake, diet, injections, surgery etc., As I mentioned I haven't given up coffee totally but.. that isn't to say that I didn't test to see if that made a difference for me - I did and it didn't seem to make a big enough impact to make the change. Then again my passion for coffee might make my judgement less than optimal in that regard. I also look at things a little differently than some, with regard to things I've lost vs. what I am willing to give up. I've already lost so much of my life due to the affects of CRPS that I'm willing to give up even more if that gave me the possibility to regain some of what I've lost. Like you said so well - we all see things differently.

Besides Hooshmands eating recommendations there are other Neurological diseases that recommend a very similar way of eating. I've even read a few books that are geared toward coping with chronic pain through the holistic approach that also support the same. Anyway.. thanks for sharing your thoughts on it, I'm glad you have found it helpful as well. lol.. it was one of the easiest and least invasive things to try, so I did

Oh my day - Fantastic!! Not only have I been zooming around the house like 'tinkerbell' haha.. My husband and I had a Celebration of Life to attend where there was 75-100 people milling about. This would normally mean I was either in complete misery trying to tough it out or I would simply not go due to the increase pain it would create both equally frustrating as I'm sure you all well understand. To my surprise - pain was well controlled!! It did ramp up a bit but never to an intolerable level. I even ran across the parking lot as I was stashing some very special homemade cookies my neighbor made especially for me hahaha seriously I was giggling the whole way.. it wasn't far but the point was I ran a few blissful steps with my epidural working like magic. Thanks for asking! And yes, I did laugh/smile right along with you and your wife - thanks for that.

I need to go back and re-read your story since I can't recall it from memory, so sorry you have been dealing with this for so long! With your many years of experience in fighting this what would you say has been the most helpful for you? Also do you have CRPS I or II?

T

I'm with ya! I've lost so much to this disease, Im not giving up this pleasure too

I feel the same, it has stolen enough! (even though I am a tea drinker )

T- I have stage 1 and have right along. I had a central cord contusion on my spinal cord between c5 and c6. There was a bone spur and I fell head first over the bars of a moped going 35mph. The surgeon said I came within a 1/4 inch from severing the spinal cord . I had the symptoms of RSD before the operation. My right hand swelled up and turned purple and hurt like all get out. Oh Tessa the pain was tremendous. Then the skin peeled off both hands like a snake shedding its skin "7" times. What was that all about? Then the hair on my hands and arms turned black and I looked like a bear. My wife has pics. of it. When the wind hit the hair on my hands it hurt like the dickens. The burning pain came at me with a vengeance. From there it went downhill.

After about close to 3 years we knew that this injury was here to stay and most likely would get worse. At that point I told my wife that from then on that I would take it as it came. I haven't complained about one thing. I keep as a positive an attitude as possible. That has been the best thing for me to get through this darn thing so far..I volunteered to try any and all narcotics to try and help the pain over most of those years. Some helped but nothing stopped it.

I have times when my head and neck gets hot as a bad sunburn and nothing can cool it down. I have full body burning also, it does it when it wants to I never know when it will hit. I also have full body cold temp where with this one the outside skin "will" be cold and then inside I will be warm [ go figure ]

But Tessa I am so thrilled that you were so happy and running again and out socializing with friends and family. What a success story you have accomplished with your strength, endurance, determination, and perseverance, it has made us so happy, it's ecstatic!! You have a great day today Tinkerbell and shine on. You make us all so proud to see someone give RSD/CRPS a kick in the center of its nervous system. Keep smiling girl, you sure brought us many. May the rest of your days be better than the last one.
Ron