Hi Lordwood,

You know I care about you.

Just hang in their. The MD's have just got to get to the root of your lung
problems. I am in 100% agreement with Mike about a lung MD.

Could you try spitting the toxin's and garbo in the mean time in the shower and tiolet. This could maybe help a little to clear the lungs in the meantime.

Hugs, Roz

Up for this wonderful guy. Roz

Hi Lordwood,

Welcome back!!

Wow bro you have a lot going on there, but it isnt surprising that it has you down. It gets all of us at one time or other. I have been having a lot of internal problems from the darn RSD.

It has made my blood pressure shoot sky high, and also has messed around with how my heart beats. I have no idea if it is in my lungs, but wouldnt surprise me there either.

Does it burn in your lungs? I am interested in how you learned it is RSD in the lungs. Do you like to play mmorpg's? Me and and a few of my sons play everquest and star wars galaxies, so if you play any of these let me know, it would be fun to group up with you.

Sure hope today finds you feelin better bro

I apologize its has been so long for my response so this one can kinda answer not just the one i replied to but the others. My doctor had me go through his list of checks so after the chest xray blood work and other work outs he sees no reason for me to see a lung specialist. While this doctor is not a RSD specialist he has delt with RSD patients and is the best of those around here. The true clarification will come from Dr. Schwartzman when i go down for my 10 Day IV Ketamine Treatment but well this one views it as, and i can just about 100% guarantee schwartzman will as well. I am keeping my fingers crossed and being optimistic that its maybe not but well i have to look at the reality of it RSD can go anywhere theres nerves and your lungs have nerves and as every test proves negative it just becomes more and more to the point i have to accept my body is beyond filled with rsd.

I do have a question for those reading any of my posts:

Do any of the drugs ur prescribed work at all? I have found that with RSD your immune to drugs even powerful ones like Oxycontin 80mg in large amounts still do zip. Its like were immortal to drugs. I can take enough Oxycontin 80's to kill even people who have been on them for along time and yet it does zip to me. Any experiences with your meds please post.

lorword

yes its like we are immortal to drugs. also i have another problems my allergies to meds keeps gettin worse and longer list i think that we are like at 20 meds. but i have a pump that has fentanyl in it and my rate is 300micgrams per ml a day which is alot !!! and it does not drug me at all. neither does percoset as these are the only pain meds that i can take am allergic highly to morphine but something in percoset doesnt make me sick like that just make me nauseus and take phenergan on top of it. but even 5 of versed doesnt do any thing i can still remeber what happend and all the next day. its crazy

i hope that they can figure out if the lungs are RSD or not ? keep your head up

carrie

Hi Lordwood,

Have you tried Nabilone, it is a THC derivative? I tried it a couple of months back but it is too strong for me, I'm hypersensitive to all drugs, I wish I could give you mine to try, it just sits in my fridge. Also have you tried methadone? I've heard some people have had great success with that even at small doses?

I sure hope that the rsd has not affected your lungs, I'll be praying for you that it is not.

MsL

That has been my chief complaint all along, and because of this my doctor has tried almost everything he can think of. So far nothing has completely taken out the pain, and the ones that put a little dent in the pain...well they only seem to dent it for only an hour or so.

I have come full circle now, and the doctor is starting to have me try meds I have already tried LOL. But for me....I am starting to just have him give me the most important of drugs like blood pressure, muscle relaxers, and just a bare minimum pain med for when the pain just gets to out of whack to handle.

I believe I am in it for the long haul, and must face the reality that things are not getting any better with time. So why be all drugged up, and unable to interact with family and friends. Life has been so much more rewarding on a personal level on less meds, plus I can recall what a joy it was instead of relying on others to tell me how joyful it was.

Since the drugs dont help, then please dont give them to me is my attitude now. Sure there are times (more than I would like to admit) when the pain is just absolutely unbearable, but I seem to get through them, even when at the time it looks like im not gonna make it through the day let alone another night.

For the first few years I was consumed with trying to find something to take away the pain. I was even begging my doctor to cut off my leg the first couple of years. It would bring him to tears to hear me say these things knowing I totally meant it. Even my wife couldnt listen to me go on about having the doctor just cut it off. After a few years, and after it spread around my body, it dawned on me that there was no cure all med.

All I could do was find a place in the middle and try to be happy with that. It is not easy, it takes determination, and sometimes my full concentration to keep myself sane. But it is well worth the effort. Life has been much more rewarding since I have resolved to make the next half of my life with RSD as happy as I possibly can.

Sure it isnt what I had planned on, and is even more closer to a nightmare than a life, but it is the cards I was dealt and I decided to make the best out of a terrible situation.

I do know this isnt for everyone, but I always believed you can do, or be what ever you can imagine. In the first part of my life I did most of what I had dreamed, and even some I didnt dream but was glad I had the opportunities. So RSD was a major speed bump in my life, but I still have some more life to live, and it will be the best I can make it for me and my family.

I don't think we are immortal to meds. Meds pretty much scare me. I try not to take anything I don't have to.

I just think the RSD is so hard to get under control. It takes time and SO many different treatments. What works for some may not work for others.

I am so hoping the ketamine treatments help you.

Ada

i try to keep that attitude allen just try to live with the rsd as best as i can and not let it control me i control it! but i know what lord is talkin about llike when i have to have blocks or surgery (knock on wood) its like it takes double to put me out. or the way that some meds effect me from working to almost killing me. like ada i only take very few and the few i take i have been on for years and wont change them

hope this finds all well

lord hope the ketamine will help

I just wanted to say "Hi" and let you know that I am thinking about you. I was diagnosed with RSD in 1989. It is now full body. With my 20 year anniversary coming in a few months, I thought I might share with you some things I have learned.

For sure, nothing stays the same. The pain I had in the beginning is different than the pain I have today. The manner in which I react to the pain is different today than years past.

Also, there are alternatives, as well as the normal drug therapies, that have helped me as well as others. HBOT would be an example. RSD Diet. Juicing diet( raw food diet RFD), herbal remedies, supplements, meditation, etc.

I would like for you to be encouraged by that fact that I am approaching my 20 year anniversary with CRPS, instead of discouraged. Each day I wake up with the enthusiasm of an approaching new day, even though there are nights I pray, "just let me survived this pain tonight".

I truly hope you find comfort here, as you learn to deal with this ever changing disease. You are young I assume (forgive the assumption) and have so much to look forward to inspite of what you are going through.

I'd like to drop a pm to tell you personally how my life has changed for the better, as a result living with RSD. Just live life one day at a time, for now.
Enjoy what ever you see that you can.

I'll get off my soap box now...I really just wanted to share and let you know I care.
Di