Things could be worse—I could be in the end stage of this disease.

I study the causes of pain because after two shoulder surgeries in one year, my pain is far worse than it was—and spreading—and my surgeon doesn’t know why. During my studies, I have occasionally come across RSD/CRPS (Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndrome). I’ve found strange comfort in its nightmarish nature because when my own hurting was at its worst, I could always tell myself, “I might be bad-off, but at least I don’t have that.”

Well, it looks like I do. At least, my internist thinks so. Usually talkative, he articulated the dreaded acronym and walked out without another word. I have no idea what he was thinking. I'm now awaiting a bone scan.

“At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.”
Deborah M. Shanley
Executive Director
International Research Foundation for RSD/CRPS

I don’t see suicide in my future, although I think about it all the time—you might even say I’m obsessed with it. I don’t even see narcotics in my future unless my doctors can give me something that works a whole lot better than Demerol, Dilaudid, Percocet, Vicodin, and Norco, none of which helps enough to justify the side-effects.

But what DO I see in my future? Sometimes, the most cheering thought that I can come up with is that I’ll probably be dead in another couple of decades if I can but hang in there. It’s not a sunshine and lollipops sort of thought certainly, except in a “jump off a skyscraper to avoid being burned to death” kind of way.

So far at least, the pain is not so overwhelming, but what I can often enjoy my time with Peggy, and nothing means more than that. I get support from two places—her and my fellow bloggers. A few local friends try to be helpful, but they truly don’t have a clue, and when we’re together, it’s ever in my mind that I still look healthy. If I were they, I might very well be saying to myself that, surely, the problem just can’t be THAT bad.

36 comments:

Natalie said...

The world is a fucked place. I am sorry that this is happening to you. For whatever it's worth, I am on your cheer squad.xx♥

Snowbrush said...

Natalie wrote: "I am on your cheer squad.xx♥"

I know you are, Sweetie. There ARE a few bright sides. One is that he could be wrong. He's a good doctor, and he seemed sure, but he'll be looking at blood tests, urine, tests, bone scan results, and who knows what all else. Also, not all cases are equally severe, and some even go into remission. Anyone can get it at any time, but women outnumber men three to one, and younger adults get it more than older adults.

I've had six decades, mostly in fair to good health, so even if it's bad, things aren't so tragic as if I were, for example, a 35 year old woman with small children.

Bernie said...

Snow, I don't know anything about RSD/CRPS at all, in fact I hadn't even heard about it until you spoke of it here. It doesn't sound good but it you can live another 20 years well isn't that really good, I mean you would be in your eighties......I don't expect to live that long.
I am sorry you are in pain, I am sorry that none of these narcotics they prescribe you do not help your pain in fact right now what I am thinking I wouldn't even write down. I am going to google this disease, pray for you and wish you and Peggy many good years together. Quality of life is precious, moreso than quantity. Be as well as you can be Snow, and I do agree with your statement "I might be bad-off, but at least I don't have that." Keeping you in my thoughts and prayers and hoping you will focus on things other than pain.....I do believe that we can manifest so many issues in our life.........:-) Hugs

Snowbrush said...

Bernie wrote: " I do agree with your statement "I might be bad-off, but at least I don't have that.'"

Uh, but Bernie, I DO have that (or at least my internist thinks I do). That was sorta my point. In my reading about chronic pain, it's the worst thing I've come across.

Bernie wrote: "it you can live another 20 years well isn't that really good"

True, this is not a problem that will kill you, but how long would you want to live if you were in such pain that you felt you were being endlessly burned alive?

Bernie wrote: "hoping you will focus on things other than pain.....I do believe that we can manifest so many issues in our life"

A life spent focused on pain to the exclusion of most everything else wouldn't be much of a life.

Mim said...

I've never heard of that disease. Maybe it's "psychological" and you can get a head-shrinker to talk you out of it.
shit man, this is crazy!!!

C Woods said...

Snowbrush ----sorry to hear about your most recent diagnosis. It might be a good thing if they know what it is ---perhaps the direction of treatment can be addressed better then previously.

You will be in our thoughts. Please keep us posted.

Christine Robinson said...

Snow, you know I'm seldom at a loss for words, but I read your post this morning and don't know what to say. This sucks. I'm bewildered by such news. I guess the consolation is that we go through stages with such startling piece of news and spend the next days and years of our lives coming to grips with it. Acceptance.

Seventeen years ago when my son was diagnosed with chronic, progressive kidney disease, I set out on a mission to learn as much as I could. Knowledge is power, they say. But of all the information I collected those first few days, the thing that still stands out most in my mind is this statement: Children with chronic illnesses such as end-stage kidney disease often develop long-lasting mental illness.

I've taken every precaution to prevent that, but in spite of such efforts, he is currently in an adult psychiatric partial hospitalization program. Even though I've looked for every possible alternative to this outcome for my son, the reality is the reality. I'm finished fighting against it and now am just trying to learn how best to live with it. Him, too, I guess.

It's hard to understand the whys of life's sufferings. That is, I find it impossible to understand. I guess we're not meant to. And so for myself, I look for the meaning in survival. Admittedly, there are days when I wonder what that's all about, too. And I feel thankful for friends and loved ones and those I help and those who help us... because sometimes survival is all about them, you know?

We often hear things like, "I don't know how you do it." I feel like saying that to you. But the nice thing about it is that I know you'll tell us how you do it. And we'll learn something from you. Such as it is.

much love and understanding,
Christine

kylie said...

and here's me feeling miserable!

i hope to meet you someday and i cant do that if you opt out, then once we meet you wont be able to consider opting out because you will be waiting for the next installment of thrilling kylie-ness.

now just maintain my delusions, ok?

xxxx

nollyposh said...

(((Hugs)))

All Consuming said...

Oh Snow, how bloody terrible for you. Take every day at a time and try and push away dwelling on it too much. Easier said than done I know. Sending you truly heartfelt love and hugs, Michelle xxxx

dana said...

Some of us have lived such WEIRD lives of introspection due to pain that, if there are LEVELS of awareness, we are at some higher level that many "specialists" would pompously equate with "self-fulfilling prophecies", "hypochondria" or "schizophrenia".

I'd prefer a good "surprise diagnosis" any day over my pre-cognitive "and correct diagnosis" that come from my own RESEARCH and not from a hypochondrial fear.

A toothache does NOT mean a brain tumor! lol. But SEVERE pain DOES cause one to "search until he finds".

When I was just a teenager, I spent a lot of time reading at the library. One day I looked up "ileostomy" (due to the fact I was constantly in severe, undiagnosed, abdominal pain).

I was told that I was "seeking attention", only because the doctors were too insipid to correctly know severe CROHNS DISEASE when it's right in front of them.

Although I had never heard the word ileostomy before, I * JUST * KNEW. I remember bringing the book home and showing my mother "what I would be having" some day.

At forty, it became reality.

Then my research led me to Hydradentis, fibromyalgia, and I pre-diagnosed myself in the doctor's office. (WOW. I do NOT recommend that approach!) For I then got to listen to him scoff at me as he said "I spent 8 years in MEDICAL college....YOU didn't"

Two weeks later, he pronounced my own diagnosis without ONE apology or reference to my prior proclamation.

It is IMPOSSIBLE to "get your mind on something else" when pain is present.

I am always being told to "get out and think of something besides yourself". But when these same people are struck down with a sore throat or a case of temporary diarrhea, you would think I'd take my revenge and tell them to "think of something else" but I don't.

Then,when they are better in a few days, they are again offering me their opinions on how THEY managed their hours of tribulation.

Wherever I go: I take myself. And I am suffering no matter where I am. Not to the extent that YOU are, my dear, newly found friend.

When things are at their worst, I think of burn victims in their unbelievable pain and know that I'm not in THAT much pain...And I feel like apologizing to them, for using their pain to ease my own.

Do I ramble? Do I get off subject? Yes. But only as a compatriot meanders with his trench-mate.

I truly and sincerely CARE about you and I am sorry that your comment section is the only way I can make that clear, but I am grateful that I, at least, have this chance.

Marion said...

"when we’re together, it’s ever in my mind that I still look healthy."

I find the part where I still look healthy, hearty and happy the most difficult, I think. I have learned that people's opinion of me is theirs and not mine to worry about. Most of the time, I think this way, at least, heh.

I am on all sorts of experimental drugs, so much that I feel like a guinea pig. That burning sensation is sometimes lulled, but never gone. I fight my way through each day, so tired at the end of it all I can think of is bed, where in just a few minutes all I can think about is getting up...

I'm sorry, Snow. I have had the feeling for a long time that you have RSD/CRPS which in my country is all labelled under fibromyalgia. I really, really hope and pray it is not. I so hope so.

I'm 59. I have had chronic pain for most of my life after a car accident; it began to be incapacitating about nine years ago, after a yoga accident where I pushed my body far too hard and ended up damaging the sciatic nerve. Game over.

My worst fear is for my relationship with my partner. We have been together for ten years...but how much longer can he deal with this dreadful chronic disease, where every day I struggle?

I carry on because there is nothing else to do. And I still have a strong need to see what happens next in my world. And I nurture hope that someone will come up with a medication that will really help...or even a cure.

Hang in, my dear friend.

Marion said...

Snow, first thing: GET A 2ND OPINION, then a 3rd if necessary! And never take a doctor's word for anything. They're all just humans guessing. Be strong, my friend, and keep writing for sure. I believe writing is great therapy and we love you and need your words!!!!

I woke up this month after 2 years of intense pain from a botched back surgery (as I've mentioned before) and told myself I'm not going to let this pain rule my life. I've changed my diet (lowfat, less sugar and more fruits & veggies) and began limping up and down my road. I can only go 1/2 way around my block, but I'm doing it every day. I think exercise is a great mood lifter and, so far, I feel much better mentally. The pain is still there but I refuse to let it rule/ruin my life...

I've written countless pages in my journals about suicide, but in the end, I've never seriously considered it as a solution to my problems. I have too much to live for and you do, too. You're in my thoughts and prayers every day. Keep on truckin', Snow!! Blessings!!

Snowbrush said...

I woke up just now sorry that I had posted this piece, and hoping that few people had seen it so I could take it down quietly. My rationale was that I CAN'T have this disease. After all:

My symptoms DON'T fit all the criteria.

Even good doctors are WRONG A LOT.

Not ONE lab test or imaging result has come back to verify the diagnosis.

So, what's next? He did blood and urine tests yesterday, so I should hear how they came out by the end of the week. He ordered a bone imaging scan, so the place where I go to get it should be calling me today or tomorrow to make an appointment. After all that, I don't know.

Mim wrote: "Maybe it's "psychological" and you can get a head-shrinker to talk you out of it."

I wish this were true because (assuming the diagnosis is correct) at least that way I might have a better chance of a cure. Unfortunately, it's not true. If you're lying in a puddle of blood with your leg bones sticking through your skin, people know you have a problem, but if you just tell them that you hurt all the time; it's easy for them to wonder if you're imagining things are, at the very least, making a mountain out of a molehill.

C Woods wrote: "You will be in our thoughts."

I had to laugh. Bernie the Catholic is praying for me, and C Woods the atheist has me in her thoughts. I take both as offering of concern and affection.

C Woods wrote: "It might be a good thing if they know what it is ---perhaps the direction of treatment can be addressed better then previously."

Yes, and early treatment is suppose to be important. Most people go through five doctors though before they are diagnosed, and, if I have it, I have no idea how long I've had it. Surely, it doesn't go back prior to my first shoulder surgery, meaning that I had to unnecessary surgeries.

Snowbrush said...

Christine wrote: "...life's sufferings...I find it impossible to understand. I guess we're not meant to."

I don't ask why things happen or why they happen to me because I have no thought that there are reasons. There's are simply causes--bad genes, drug interactions, slipping on a banana peel, drinking while driving, and so forth.

Christine wrote: "Children with chronic illnesses such as end-stage kidney disease often develop long-lasting mental illness."

I had never thought about this, but it makes sense certainly. Most of us are well into adulthood before we learn how fragile health, and life itself, are. And then there's the matter of being disabled and suffering while your friends are all out playing.

Love you, Chris.

Nollyposh: "(((Hugs)))"

Thank you, Nollyposh. Do we need to talk?

Dana wrote: "he said "I spent 8 years in MEDICAL college....YOU didn't'"

Dana, I swear to God, I have no doubt whatsoever that I would have changed doctors. You know as well as I do that doctors can be and often are wrong, wrong, wrong, oftentimes fatally wrong; so this argument from authority is bullshit (and it is why I wish I had held off on posting until I had a definite diagnosis). If you're wrong, you deserve to be given a reason why. It is COMMONPLACE for patients to properly diagnose themselves.

Dana wrote: "I am always being told to "get out and think of something besides yourself".

Many and maybe most of the people who responded to this post have been there, Dana. Such advice is even correct to an extent, but it's too glib, too much in ignorance of the severity of the problem, and too often given by people who don't have a clue what it's like to be in moderate to severe pain every moment of every day. I laughed at your description of them "surviving" a brief bout of diarrhea, and then talking about it as if it had been a dire disease.

Dana wrote: "I think of burn victims in their unbelievable pain and know that I'm not in THAT much pain...And I feel like apologizing to them, for using their pain to ease my own."

You are actually complimenting them by using their strength as an inspiration for your own survival. It's what every human being who goes through an ordeal does--look for role models among those who have survived as much or more.

All Consuming wrote: "Take every day at a time and try and push away dwelling on it too much. Easier said than done I know."

You would know. You have no idea how lovingly I think of you, or how sad I am about the surgery you are about to face. At least, it will be over soon--though not soon enough, for sure.

Marion wrote: "RSD/CRPS which in my country is all labelled under fibromyalgia"

I'm appalled.

Marion wrote: "My worst fear is for my relationship with my partner....but how much longer can he deal with this dreadful chronic disease, where every day I struggle?"

I have no such doubts about Peggy. As much as it is possible to trust another human being, I trust her, but then we've been together 38 years. I hope your fear is misplaced....I wish I had something more intelligent to say about it.

Marion wrote: "I've written countless pages in my journals about suicide, but in the end, I've never seriously considered it as a solution to my problems."

How does a person know how close he is? I remember a time (years ago) when I rode around with a .357 magnum in my lap wondering if I would kill myself. I knew it could all be over in a matter of seconds. Yet, I always come down to various thoughts: Am I blowing the problem out of proportion? Is there even the possibility of another viable solution? How would it affect Peggy, a few friends, and even several of you who are dealing with your own problems and would be terribly hurt and discouraged if I abandoned you.

julie mitchell said...

“At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.”...Well this is NOT so good. But it isn't clear to me rather or not something can be done?...I certainly don't want to go to the vision of this being your forever situation and then you go crazy with pain and shoot yourself!!! What's the cure? the treatment?...and then I wonder would it just be good to give your suffering a reason and title? I know it would be good if it can be fixed! Many blessings to Peggy...this must be over-the-top hard for her too...

Snowbrush said...

Julie wrote: "But it isn't clear to me rather or not something can be done?"

There are nerve blocks, electrode implants, and pain medication pumps. There is no cure, and the disease gets worse until it is surely hell on earth. Some patients respond well to one or more of the treatments, and others don't--and as I wrote above, some even go into remission. One of my followers (http://elysianreveries.blogspot.com/) has the disease, and has been significantly disabled for years with no treatment offering anything more than temporary relief (temporary as in days).

Julie wrote: "I wonder would it just be good to give your suffering a reason and title?"

I like having a diagnosis other than "osteoarthritis" and "inexplicably prolonged recovery from surgery," because having a bad disease explains my pain. It means that I'm not crazy (I never really thought I was), and it means to others that I'm not a malingerer (surely, no one who knows me would think so anyway).

I ride my bike to the library most days, and yesterday I ran into some people who asked me how I'm doing. Well, I'm not doing good, but there I was looking healthy enough and riding a bike. I just know that i I had been them, I would have wondered how bad off this guy could really be when he feels well enough to ride his bike. I don't want pity, but I do want to be taken seriously.

Diana said...

Well Snow I am sure that my pain isn't as bad as yours but I am in constant pain none the less. And it really does suck. It's depressing as well. All I really do is just tell myself that this is the way it is.
I have arthritis in my hands,hips, spine, knees and feet. I get those same looks from people because I am so "young" they think that it is just a bunch of bull. But most of the time it's a struggle to walk. And there is always pain. Knee surgery is in the future. I am being tested for RA. But whatever, I am not here to complain, I don't even know why I went on about it except to say that it really does suck living in constant pain. But I will say that I still keep doing as much as I can. I hate sitting. I just started bike riding which so far doesn't seem to bother my knees too much. We shall see. I wish you all the best Snow. Did you find any evidence that there may someday be a cure or a different medication for this RSD/CRPS ?
Love Di ♥

Marion said...

Snow, are you depressed? I mean SERIOUSLY depressed like you can't get out of bed many days and have constant thoughts of suicide? I don't own a gun, thank God, or I may have used it on someone else. But, my friend, if you are that depressed, you might want to consider medication or psychotherapy. You have good cause to be depressed what with all you've been through physically, but there's so much help out there now, that you should not suffer needlessly. Be sure to talk to your doctor about these thoughts. There is light at the end of the tunnel and you can learn to live with pain.

The thing that keeps me from serious thoughts of suicide is learning/reading how it devastates those we would leave behind for generations. I could never leave that kind of legacy for my kids and grandkids.

Be strong and reach out for help! Sending you love and hugs. Blessings!

kj said...

snow, i just don't know what to say. i am motivated to read about this diagnosis, esp the part about forboding psychiatric breakdown. i don't see you doing that. for whatever reason, i don't.

now i should say i deal with chronic pain alot in my work. i deal with objective and subjective diagnoses, and i deal with loss and trauma.

i know people who's pain doesn't let up, who have modified their lives so dramatically they wonder how to hold on to themselves. i don't see you doing that either. for whatever reason i don't.

maybe it's because you describe a life that is still at least marginally active. you ride your bike, you walk your dogs. you cherish your wife. you write with eloquence. you bitch healthily. you care, you connect.

am i being simplistic, perhaps unrealistic or unsympathetic? i hope not. i wish i could see you in person sometimes snow, because your spirit always strikes me as far more vibrant and active than your self report.

you are already on plenty of narcotics. i assume you've been to a top pain management clinic, ideally an inpatient one?

i'm off to look up rsd/crps. my brother-in-law has the rsd part. you remind me of him.

snow, i'm sorry i'm not more reliable, more present. i'm here if you need me, certainly.

love
kj

Strayer said...

Well, don't believe them. You are a fact person. Evidence, you'll need to prove to yourself you have such a thing.

For ages upon ages, and even now, many doctors make fun of people who claim to have fibromyalgia or chronic fatigue. But it's been linked to exposure to some mouse or rat feces carrying virus. Antivirals are the new treatment for these two diseases thought to be imaginery or autoimmune.

Be careful who you believe.

JOE TODD said...

I saw this in a book review and thought of you "Pain is so real that less-real things like who you thought you were and how you meant to act can vanish like drops of water flung on a hot stove. Your virtues can become as abstract as algebra, your beliefs as porous as clouds.
"An Altar in the World by Barbara Brown Taylor. She has much more to say about living with pain.

Snowbrush said...

Diana said: "I am sure that my pain isn't as bad as yours but I am in constant pain none the less."

I would have no idea about that. If two people have cancer, and one of them is dying while the other is expected to recover, you can probably assume that person number one is worse off. Pain is different though. This disease that I'm supposed to have is said to be greatly affected by stress. Well, that's sure true, but then all pain is that way to a greater or lesser extent, right? And if you can't afford proper medical care, that means that not only are you not being helped, you're also angry and stressful that you're not being helped. Then there are those who are well-supported emotionally versus those who suffer alone. My point is that so many factors aside from a simply diagnosis enter into it. To continue, most everyone over forty has arthritis, but then some people have osteoarthritis to a degree that only aggravates, and others have osteoarthritis to a degree that makes life hell. And what if you have rheumatoid arthritis--does that necessarily mean that you're in more pain than with osteoarthritis? So, I'm loathe to jump on the "You've got it easy compared to me," wagon.

I'm glad the biking helps. Is swimming or an aquatics exercise class another option?

Snowbrush said...

I'm having to answer your responses in starts and spurts today, it seems, and apologize for cluttering up your mailboxes.

Marion said: "I don't own a gun, thank God, or I may have used it on someone else."

Squeamish about hatchets, are we? Well, yes, I'm depressed, and have been for years (although, given my present circumstances, I'm greatly nostalgic for most of those years). I've been on Elavil, Prozac, Lexapro, Zoloft, Paxil, and maybe one or two more. I've seen (and personally known) enough inept therapists to lose all respect for the profession. I've heard that there actually are good therapists, but I've never seen one for myself, and I rather think of the profession as being hardly more scientific than astrology anyway.

I talk very little to doctors about feelings. I haven't observed that most of them do well with such things, and all they're going to do anyway is to give me a drug and send me to a therapist. If I decide I want a drug, I'll talk to a doctor. Otherwise, I had rather devote the all too little time I am with him or her to talking about physical problems. That's what they're by far the better trained to deal with, and feelings talk just distracts them. My main objection to anti-depressants right now is that I'm already on a truckload of pills anyway, plus anti-depressants shouldn't be taken with one of them--SAM-e. Also, SAM-e itself has anti-depressant properties--at least, it's supposed to; I haven't much noticed them.

Marion wrote: "you can learn to live with pain."

Everyone does if they live long enough. Some of you are younger than I, but more experienced in this aspect of existence. "All Consuming" (see above) was my first teacher because hers was the first blog I ever followed. She is now awaiting a serious surgery, so please send her your prayers, best wishes, large gifts of money, or whatever else is in your heart to give.

Snowbrush said...

KJ said: "psychiatric breakdown. i don't see you doing that."

Ah, but how would anyone notice the difference? THAT'S the question that bothers me.

KJ said: "am i being simplistic, perhaps unrealistic or unsympathetic?"

No, you are spot on.

KJ said: "I assume you've been to a top pain management clinic"

You are spot off. I have assumed throughout the last year that I would eventually get through this. Now, I know I won't (even if the diagnosis is wrong, the pain is still there, still severe at times, and still not getting any better), so I will be looking into long term pain management after I get a definitive--or at least a likely--diagnosis. Until then, sleeping pills are my major ally.

Strayer wrote: "Well, don't believe them. You are a fact person. Evidence, you'll need to prove to yourself you have such a thing."

I love you, Strayer. I've been telling myself the SAME thing. In fact, I've been downright cheerful since i remembered that doctors screw-up diagnoses ALL THE TIME, as I know from personal experience, AND this doctor made what he considered a probable diagnosis with very little hard evidence. He could be right--he's known as a great internist--but I'm far from convinced, and I'm far from beaten.

Joe wrote: ""An Altar in the World by Barbara Brown Taylor. She has much more to say about living with pain."

I'm sure of it! What a passage. I'll be looking her up in about three minutes here, Joe.

CreekHiker said...

Snow... I'm so very sorry to hear of this. I sincerely hope you find some respite from your pain.

Lori ann said...

I came here to tell you thank you, you made me smile and you made my day.
I wish I had something to offer you as well,something intelligent to say, but I don't know what I could say to make you feel as good as you've made me feel.
I guess the thing that comes to mind is never give up, keep searching and researching until you find the Doctor or medicine that can help you.
My brother in law is manufacturing medicinal cannibus capsules that he swears alleviate pain. It's some kind of oil you swallow instead of smoke(weed).
I'm wishing a pain free life for you snowbrush, i don't know you, but you are a man that appreciates beauty (flowers) and i like that.

Natalie said...

I am happy to see that two of my favourite people are now friends. :))))) (Lori)
Sending love, Snow, and hopping from foot to foot, because....well, what else can I DO? F@#K!

Silke said...

I simply wanted to come here to thank you for your comment on my blog today and tell you that we live right by Fort Pulaski, where we often walk our dog and look for alligators. And then I arrived here and have been reading for over an hour!

I wish I had something helpful to say, but I don't. I cannot imagine living every moment in such great physical pain. I truly can't! It makes me realize how very easy my life it, and how sorry I am that you have to experience such hardship!

I will keep you in my thoughts and I hope that you don't mind if I stop by now and then...

Silke

xinex said...

I am sorry you are not well, Snow but I just want to let you know that belle or no belle, you are welcome to join our get together....Christine

His kajirah said...

Snow..

I've often wondered if you did. I've had it since 2001, diagnosed in 2003, but by that time it was too late for me. Those diagnosed and treated on the onset have a chance at remission, mine came and went, never had a chance. I've been in stage 3 all this time. There is a stage 4, but some docs don't agree for certain that there is.

I've been an advocate for this illnesses for years. I'm a group leader at MD Juction's RSD Support

http://www.mdjunction.com/reflex-sympathetic-dystrophy

My ID there is rsdcrpsfire, but I sign my real name.

My website is http://www.CRPSAdvisory.com
twinkle@crpsadvisory.com

Secondary to my CRPS, I've developed several other illnesses.

If you ever need me, I'll be near. Heading on 10 years with this.

Please feel free to email me if you have any questions. I'll reply as soon as able. Unfortunately, sometimes it takes me a few hours or a day.

I've dedicated my life to helping others survive this..

You are in my heart and prayers, as is Peggy.

Wishing you a pain eased evening,
~Twinkle

Snowbrush said...

Oh my, I didn't realize how behind I had gotten in my responses.

Natalie and Creekhiker, thank you for your kind encouragement.

Lori ann said: "My brother in law is manufacturing medicinal cannibus capsules that he swears alleviate pain."

I'll be right over. I DO wish the damn feds would back off on their marijuana crusade. If we're not wasting money on idiotic wars, we're throwing it away on idiotic laws. Arrrrrgh! Good thing I'm taking it so well, eh. God bless your brother-in-law.

Silke said: "we often walk our dog and look for alligators"

Here in Oregon, I've had to rescue my schnauzer from a bobcat, an owl, and a hawk, but no alligators as of yet. By the way, I spent my first 36 years in Mississippi, and studied the Battle of Vicksburg battle a great deal.

Xinex said: "belle or no belle, you are welcome to join our get together....Christine"

Why thank you, Christine. How very sweet of you. I guess I could dress-up as Rhett Butler, eh?

Dearest Twinkle, thank you, thank you, thank you. I so appreciate the links. I am delighted to find that I lack most of the symptoms, yet you and my internist think I've got it. He, of course, examined me in person and seemed pretty sure of his diagnosis. I consider him an excellent doctor whose opinions are to be taken seriously, but I'm still hoping he's wrong.

His kajirah said...

You're very welcome, Snow.

I'll continue to pray that you don't have this, but it seems your doctor knows his stuff.

There is no single test to determine this diagnosis for certain. While bone scans are used most, even they can come back negative and one can still have RSD/CRPS. The doctor diagnosis by subjective and objective findings. Visual color changes in the skin, temperature changes from the diseases areas of onset to the better limbs.

Fire and burning is a main symptom of RSD type 2, which is now known as CRPS (in the past Causalgia). Causalgia means fire.

It gets a little confusing. I have CRPS type 2, which means with nerve damage. RSD type 1 is without known nerve damage.

The severity of pain can be different or the same in either.

I also have Fibromyalgia, not the same diagnosis as RSD/CRPS. Fibro is muscle pain often caused by stress the body can't get rid of.
Stress does trigger RSD/CRPS flare ups, too. And depression follows as a result.

I worry that if you are in stage 3, all you can do is embrace the good and try to go on. Pain blocks, stimulation, meds will be your options.

Ketamine infusions have given many remission but it's costly and invasive. There are also 5 day Ketamine Coma's (remember special K from the 60's 70's? Animal tranquilizer?) same drug. There are drips going on now that are offering relief. A few hours a day for a week.

I've not yet done this.

What happens with our illness is that our pain receptors in the brain switch on (with injury or surgery) but never turn off. Our sympathetic nervous system becomes broken.

The pain switch remains on. It stays on. All we feel is pain. And that is why the suicide rate is so high. There is rarely ever a break at all.

That's why 4 days of ease in my last block a couple of weeks ago was worth it. I got a chance to breath and exhale instead of hold my breath, which only makes it worse.

Warm wishes to you and Peggy,
~Twinkle

Snowbrush said...

Twinkle, I feel the burning alright (in my lower leg bones that is), so I originally thought I had shin splints. But then the burning kept coming back for no apparent reason, so I looked up shin splints and found that they affect the lower half of the lower leg, whereas my pain is from the bottom of my knees to the middle of my lower legs. I can't see any color changes or swelling though, and I'm unaware of any temperature changes. I think he was going by the residual pain from my two surgeries, plus the pain in my legs, and adding to all that the severity of what I'm experiencing. I'm no woos when it comes to pain, but this really hurts, and what you say about not breathing is so true. I just want to shrivel up into a little ball and implode, anything to escape this hurting.

Murr Brewster said...

Well, aren't you fun! They say comedy and art come from pain. Next time I can't come up with anything to write about, I plan to stab myself with a fork and see how it goes. Actually, I hope you get better, but that's not very funny.

Crazed Mom said...

RSD is something I learned of from my Med/Surg book in nursing school. Even this massive tome (1800 pages) just basically said RSD is a bad disease to get. Then it explains the whys and wherefores of the mechanics of RSD.

If you have this, would a pain med pump~I'm not all that knowledgeable about this~but there is a pain dealie where they implant some type of pain controller in your back and it helps immensely with pain below the waist. Would this be something that could help?

I'm sure you've heard of some of the pain research going on back east at Yale and Harvard. UW is doing clinical studies as well. One study shows flashing lights calms certain types of pain. ? Hey it was on the local news so who knows. I guess what I'd like to say is there is some small hope that within the next several years breakthroughs in pain management that don't call for opiates.