I have been thinking about this question for a few days.

When talking to my Dr. Monday he was asking me what I did for myself. He says all I do is talk about what I do for the kids. He asked me what I did to make me happy. He ask me about my past which he knows more of it and remembers more of it then I do due to also councelling me.

I am going on 57. As I told him I got sick at the ripe old age of 36. It started in 87 with an etopic pregnancy. From there it was all down hill. I also made the remark that everyone expects me to stay like I am.

That's what brings me to the question. I do know there are many more people in this world today. Many many baby boomers and now we have the younger generation coming on and coming up with things like MS, RSD, TOS, Fibromyalgia, CPS, you name it.

I realize there is no cure for these yet. I am wondering if any of you get the feeling from your Drs. that this is normal, we are suppose to just deal with what we have, we will never get well, there is no cure for any of these as I said so they see it that way, and I question how much research is being done on any of this.

Why have Drs. gotten to the point that we should accept where we are at and live with it? Like I said, I am 57 now. Luckily I won't have to deal with this again as long as you much younger ones. Why is it so easy to accept that so many people have these diseases and illnesses and they should all stay that way.

This is the way it seems to me with Drs. nowadays no matter what kind they are.

I will say my Dr. does get me in every week, twice last week to try and keep my RSD and other problems calmed down. I can even walk in and they will take care of me, I am working hard at at least getting better but it's frustrating.

I do believe also in surgeries to get a part of us better if we feel we need it. I think surgeries are important even though we have RSD to get a part of us doing somewhat better.

Any thoughts on this?

Ada

If this stuff is as mysterious as I seem to be discovering it is, they surely will never find a way to stop it or get rid of people's suffering for good.

Learn to live with it.

I was told that for a different condition years ago, and I walked out of that doc's office and never went back. Another doc later was able to help me. So I don't believe in "learn to live with it" anymore. I'm gonna keep plugging along and try to get total relief!

I really have no life anymore....

If anyone hears of any clinical trials looking for a more than very willing guinea pig... I'm up for it!!! Heck... the way I look at it... can't be worse than this monster....


Can you tell.... I'VE HAD ENOUGH!!!!!!


Hugs to all...
Abbie

I believe our doctors tell us that we have to live with pain because that is all that exists in their bag of tricks, a trite phrase that has no meaning.

Anyone who has lived with chronic pain knows that we cannot get better until we are well, and well doesn't mean living with an uncontrolled beast roaming freely throughout our bodies.

I know that most of our doctors are intelligent, but they are not smart. They seem to be able to memorize material, but they seem unable to take in information, synthesize it, and create a unique approach to solve the problems that we present.

I believe many of our doctors are no better than a crappy computer with a mediocre database installed - here's the problem; here's the solution - with almost all of the limited, predetermined solutions provided by drug companies.

And still without a solution I continue to say, "I hate the medication I am taking; I hate the side effects that they cause; and I HATE THE PAIN." But as much as I hate pain, I hate even more how my pain impacts my spouse, my family, and my friends.

And, no matter what our love ones say, we know they are impacted. I remember the conversation with my dear, dear wife where I said at least I did not have a cancer that included an agonizing death, and she quipped back, "What? Verses having the slowest and most agonizing of deaths ever conceived?" It was a slip, but it spoke to the depth of impact. And, it was at that moment I understood why it was too difficult for most of my pre-injury friends.

With all of the worthless words that I have added to the conversation, I understand this is my place. I understand I have to continue to find ways to celebrate each day and everyone in my life.

I know so very well that I can cry, and I know that because of the pain I can empathize better than most. I have learned how to celebrate the tears, especially those shed in empathy.

Though this beast of pain can maim, it cannot blind. I can choose to look for the laughter and for the joy of living - things that used to rush blindingly towards me. This beast can kill my body, but it does not have the right to touch my soul.

I choose to continue to celebrate life - for those who I love, for those who have loved and for those who continue to love me; but especially for my dearest of loves, my precious wife.

I also celebrate this site. This site is filled with wonderful people who are traveling a forced march through hell and choose to support each other on their hellish journey. And I especially celebrate this site and the ones who have who have watched someone be selected for that march and have willingly thrown on the backpack.

Mark,
just wanted to say THANK YOU!!!

Your words have touched me.... shook me to my soul and sparked a light inside of me....

Thank you for helping me to see things very differently than I have been!!!



Abbie

Ada and all:

I also do get the feeling that many doctors give up easily when they can't come up with a quick fix. I have been told by the few who have even heard of RSD that mostly I just need to live with it, manage the pain the best I can, but that there really is nothing to do that will actually cause any improvement.

Like you, I was diagnosed in 1986 at the age of 35. All that has happened is a slow deterioration that seems to be picking up momentum. I don’t know why the medical community seems to accept that nothing can really be done. There have been many discussions on this site about getting more publicity, with a celebrity “fellow sufferer” like Michael J. Fox, Christopher Reeve, etc. Personally, I would not wish this monster on anyone, celebrity or not.

As others have said, the best thing we all have going for us is support -- family, friends, sympathetic physicians, and of course, each other. Often, that is what keeps me going. My boss and co-workers don’t fully understand what I am going through, but they all back me up as much as possible.

As hard as it is, let’s all try to keep an optimistic attitude. Even if we can’t see any progress on the horizon, we know we are never alone.

Love to all…

Mike

Mike and Mark, thanks for the great words of support. We all are here for each other and we are all blessed to have each other through this. I have a lot of family and friend support and my Dr. has been at my side for 17 years now so he has been a Godsend and so was Bill.

I think Mike gets more what I am saying though. We see these Movie Stars with MS, Jerry Lewis doing the MD telethon, Michael J. Fox with Parkinson's which my Mom and Dad both had, Cancer, Diabetes, they are always on the top of the research list. These are the older diseases and it seems to me that the newer ones are just being left by the wayside.

I too have seen way too many Drs. to talk about. The Pain Drs. I had like Mark were saying seemed to know less then we do by learning off of the computer. I would actually hear of a medication on here and mention to my PCP and he would let me try it. He researched and has stood by me when Pain Drs. just want to hand me a bunch of drugs and say, we're done. I think they are too passive about these chronic pains. I think too there are so many people coming up with them that they decided it was just too common and too many with them so they run the patients through like cattle and really try to do nothing major for them.

As far as meds, how many have come out for the nerve pain. This Lyrica I believe will come down to being the next Vioxx/ Celebrex rerun. Lawsuits galore. A person gains 30 lbs. from it and has a heart attack or develops diabetes, all of the other side effects it's putting out there. I'm amazed that they are saying it's the first one for Fibro when Fibro has been know now for years since at least the early 80's that people started getting diagnosed with it.

The only other things we hear are the Ketamine treatments which now have been decided they might be bad. HBOT also.

How many med are around for High Blood Pressure, depression and so on compared to these few things for these illnesses.

I do know we all have each other and I see people on here struggling all of the time but it bothers me that nothing seems to be getting done for them.

As far as Drs. Their oath is First Do No Harm, well first you got to do something to inflict harm. LOL I wonder if it really means in Laymen's terms Just live with it. That way they do no harm.

Girls, I wanted to say thanks for the your thoughts too. We seem to notice it or have a harder time dealing with it at times then the men, at least it seems that way to me. Bill never complained up until the end so I know they seem to be able to deal with pain more.

This is me on my soapbox.

Ada

Hi Ada,

I agree with what you say about the unknown qualities of our medications. It is quite scary that many people, depending on where they live, have no other option available to them but to be guinea pigs for the drug companies.

This is why exploring other methods of treatment must be encouraged.
I believe that nerve blocks, physiotherapy, mirror imagery, occupational therapy and psychotherapy maybe all viable methods of treatment for RSD/CRPS even though blocks involve the use of anaesthetic drugs.

I have not heard there being too many concerns regarding Ketamine and Hyperbaric Oxygen therapy that would rule them out as a forerunner to modern treatment of RSD/CRPS. In fact these two treatments may have far less side effects than most of the run of the mill medications that doctors over prescribe when they know no better.

As everyone has said, we need recognition for our disease, recognition that sure would be helped if someone who had a high and likable profile in society was struck down and realised they did not have access to adequate knowledge and care of their disease.

Cheers all,
Tayla

Someone, I think Sandel put up a website awhile back. I can't think which one it is. My brain is very tired tonight. It talked about the new problems being seen with the ketamine. I will try and find it.

I'm not saying that people shouldn't try different things. But I do believe being put into comas for days isn't the answer. That just seems to scarey for anyone to me. It's not been ok'd here and I have mixed feelings about it being done.

As far as HBOT, I meant they were the only other thing being offered and there seems to be a reason they aren't being paid for by the insurances. I was told by my social worker that most insurance companies follow what Medicare does so I am wondering why they haven't approved this yet.

Ketamine might be good as shots, meds but as I said, I worry about the coma issue.

I am just trying to figure why these illnesses are just falling by the wayside.

Ada

It was Lindecker that put up that information. Go into Rocky Mountain RSD/ CRPS website and read all of the pages. It's pretty interesting. This lady is kind of documenting treatments of different ones in the group as they have them done and it tells the good and bad of them.

QUOTE=dreambeliever128;236522]Someone, I think Sandel put up a website awhile back. I can't think which one it is. My brain is very tired tonight. It talked about the new problems being seen with the ketamine. I will try and find it.

I'm not saying that people shouldn't try different things. But I do believe being put into comas for days isn't the answer. That just seems to scarey for anyone to me. It's not been ok'd here and I have mixed feelings about it being done.

As far as HBOT, I meant they were the only other thing being offered and there seems to be a reason they aren't being paid for by the insurances. I was told by my social worker that most insurance companies follow what Medicare does so I am wondering why they haven't approved this yet.

Ketamine might be good as shots, meds but as I said, I worry about the coma issue.

I am just trying to figure why these illnesses are just falling by the wayside.

Ada

It was Lindecker that put up that information. Go into Rocky Mountain RSD/ CRPS website and read all of the pages. It's pretty interesting. This lady is kind of documenting treatments of different ones in the group as they have them done and it tells the good and bad of them.[/QUOTE]






Ada,

Ketamine coma as you know is not approved by the FDA in the US or Australia.The reason for this is not the drug itself but the risk of the coma. Being in induced coma for a treatment that may or may not work is still thought to be too controversial for our countries. However Ketamine as a sub-coma/awake 5 day Infusion is documented as a treatment which is proving to have a lot more going for it than against it.
As you know we use it almost as routine here in Australia with zero morbidity as a result and a whole heap of success.

Despite Ketamine coma not being approved here there are still many people willing to travel to Germany or Mexico where Dr Kirkpatrick refers many of his patients. There are some wonderful stories of the successes on RSDhope web site.
It is one of those really difficult choices we may be faced with--whether our pain is causing such issues to our lives and health that we would take a risk.
I am really not sure what I would do if Coma treatment was available here.

The HBOT has only just been approved by Medicare for use in Australia for CRPS. There were ways to get around that before by claiming it was being utilised for the signs of poor circulation and it was usually approved.
You read some stories about it's benefits but I truly believe it is like most CRPS treatments and the earlier in the disease process then the better the result will be.
I had marginal pain relief from mine which did make me happy but as it was already over 11 years since I was diagnosed I didn't get the lasting relief some people who had treatment with me got.

My hope is that all of us will one day be able to access the type of care for our CRPS that is likely to bring about success.
Cheers
Tayla