The nightmare unveils to be worse than imaginable
 

Its been awhile since i have been on here. I am in on track for the Ketamine Treatment i have one last test this monday to go through and than i go for it. Problem is my RSD has decided to attack something crucial to human life...My lungs.
I am 18 almost 19 and for those that remember my post way back, i have had RSD External & Internal for going almost 6years now.
2003-Left Foot
2006-Knees,Wrist & Hands, & complete chest wall
2007-Nerves directly around the heart, & stomach/intestines.
2008-Both eyes
2009- Both lungs.

My question is i would like to speak with those experienced RSD fellow suffers that have rsd in their lungs. I know of alot of full body suffers but almost all full body suffers deal with external rsd all over. Those fitting my asking please contact me asap thank you very much.

Hi Lordwood,
 

I don't have RSD in my lungs but I was glad to see you post.

I know you remember me from our PM's and you brought a smile on my face to see you here. It's for a sad reason I know and I do want to say, I will keep you in my prayers that you do start getting better soon. You are too young to have to go through this and such a great guy.

Ada

Good to see you again! I'm full body but lungs are clear. I hate that you are being attacked by this vicious beast. I wish many times I could do something to help the ones like you, being ravaged inside and out far too fast. I hope the treatment comes very soon as it seems there's not a minute to waste. I'll keep you in my thoughts and wait for updates. :) I have 2 kids your age...a son who's 18 in 2 months and a daughter who's 19. It tears me up to see the young ones like you in here. There's always the chance my own children could get rsd since nerve disorders run in my family.

Hugs,

Karen

Hi Lori, respectfully, for all of us newbies, can you provide a chronology for us?

It really helps me to look into the future...
Thanks!

I left a chronological order,*edit*

I am sorry I asked. I will refrain from seeking advice from anyone who has had this condition longer than I

bumping the original post ... with request in bold.

Check your PM fellow.;)

No one at all out there?!? :(

This may be helpful, I don't know. About 4 years after developing CRPS, I was being worked up for what turned out to be an undiagnosed non-transmural MI (I had apparently presented a false negative on a thallium stress test a few months earlier, and had a normal EKG when they took me to the ER with severe chest pains in the middle of the night, so anything "cardiac" was ruled out, even though it later turned out that my mid LAD was fully occluded and I survived only due to "good collateral blood flow.") Anyhow, along the way, I was worked up by a pulmunologist who ordered periodic CT studies of my lungs, and about three months into the exercise we found a "ground glass formation," and subsequent CTs found it to be spreading. At that point, I went to the Mayo Clinic in Rochester MN (they also have one in Jacksonville) where they were able to biopsy the lung tissue with a *bronchoscopy - the idiots in LA insisting that it could only be done via surgery through the chest wall notwithstanding the fact that the Mayo Clinic has been doing it this way for 30+ years - and came back with a diagnosis of sarcoidosis.

Now, my internist in LA, who's a very smart fellow, told me that I had to think of my CRPS, sarcoidosis and "Monoclonal Gammopathy of Uncertain Significance [MGUS]" as manifestations of one underlying disorder. And I'm still looking for the genius that can do that. But in the meantime, a great sarcoidosis specialist at USC has followed me, and we have seen the sarcoidosis go into spontaneous remission. (As it does most often in white males, were I an Afro-American female, it could of been a death sentence.)

Bottom line: have you been seen by a really good pulmonologist who has confirmed that you have RSD in your lungs? I would think that they would want to with a biopsy utilizing a bronchoscopy, which is a relatively non-invasive procedure, done under only mild sedation. The pathologist could then confirm that it was in fact CRPS by looking for evidence of focal small-fiber axonal degeneration. See, "Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy)," Oaklander AL, Rissmiller JG, Gelman LB, Zheng L, Chang Y, Gott R
Pain 2006; 120: 235-243. [Free full text at http://www.rsds.org/2/library/articl..._pain_2006.pdf ]

The reason I suggest this, is because if a biopsy shows that it's NOT RSD/CRPS, then other treatment options, including steroids, may be available.

Good luck,
Mike

*fluoroscopy assisted

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 :hug:

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.

Hi Lordwood,
 

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

Hello LordWood
 

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

I am sorry if my last post was a bit too much :o

The 10 year anniversary is April 1 for me and I wish I could say april fools lol. I am in total agreement with all of you about how the meds seem unaffective on the RSD. Just kinda got off track thinking about what helps me to not dwell on how bad I always feel.

Hope everything works out for ya lordwood. :hug:

Hi Lordwood,
 

I am thinking of you today and hoping you are feeling better.





Ada

hi lorwood
 

check in with us and let us know how you are doing hope to see you soon
hang in there buddy

carrie

A little Bump
 

Carrie, I'm going to bump this up, because we haven't heard from Lordwood.
Lordwood if you can check in and lets know you are ok. WE are concerned.
Di

good im worried about himlorwood i hope that he is ok
carrie

Lordwood,

I really hope that you are doing OK. As the others have said - we are all really worried about you so please check in with us and let us know how you are doing when you can!!

I really wish that I could offer you some help and relief from your symptoms but I can't unfortunately - just know that I care and am here for you if you need someone to talk to :hug:!

Alison.

i know your out come back to us!!!!
 

lord please check in i hope we can talk some more i enjoyed

Hi all!! I can't remember the date, but I know that Lordwood was due to start his infusions around now. Perhaps that is why we are not hearing from him? Let's keep him in our thoughts and prayers and hope that he checks back in with us with some promising news after his treatments. The poor dear desperately needs some relief.

Sadly no not in yet but have heard word
 

After the long haul of jumping when they tell you to jump and going through all the hoops finally i learn of my treatments time. While i am sure most of you know the medical field does not work as it should and they are slow as heck even when it is important. My treatment is scheduled for April. One test result didnt get to them as it should of but within the week it should be to them and than i'll get the exact date but in the mean time they wanted me to know it will be April. I think the meds affect patients differently and while i have done enough to prove over and over they have no power or effect whatsoever on me for others it can be a different story. In the mean time to get my mind off the pain and get away from the depressing and lonesome prison of my house i have ventured to my local library to be a volunteer which librarian work was a like of mine even when in school it was a way to get away from the everyday aspect of everything. Now of course after my lungs started up and made it i couldnt breath i had to diminish that help which depressed me more till my doc put me on high doses of xanax and we learned the breathing issue was anxiety so i was able to return to the library and have been working there as often as possible. Sadly the pain within my lungs doc and i still fear is the rsd, but the good view point is the breathing is not effected by the rsd yet and it was just something as simple as the anxiety. Why anxiety appeared now when i should have had it back in 2007 no one knows and why just all that sudden but anxiety can do that. Anyway so i retreat to the library and volunteer alot to keep myself busy and away from sitting at home in realization of it all. I hope all of you are doing well and will be on more often. Definitely to let you know when i learn the exact date. I thank you all for your responses and hope to hear from you all. :) :grouphug:

Hi Lordwood,
 

Great news on the treatment and the Library. I love books but I find it very hard to sit and read. My mind doesn't stay on anything for very long. I think it's great that you can do the volenteer work though. It does help keep your mind off of things.

It's good to see you here and I do hope you stick around. It will be interesting to hear what they do for you in the treatment and how it works for you. People learn from experiences of others.

Glad to see you back,
Ada

glad that you are finally getting a date at least you can look forward to it.. the anxiety is a tricky thing it just creeps up on ya like a ghost ...im glad that you have gotten out of the house and mingling with the rest of us

hang in there
carrie

I have the same problem and it drives me nuts that i can't sit and read a book. I have a list of ones i would like to read but i just can't concentrate long enough to read a book. I know its cause of the pain but still i just wish i could.

Hi,
 

I agree with you about the books. I have a library here in my house and I will start to read one and just get distracted or think of something else I need to do.

At least since I like antiques I can look at the pictures. LOL

I love books on History. The History of different states interest me.

For awhile it seemed like I was getting better about reading but then I went back to not being able to keep my mind on them.

It is the pain I think. It's hard to sit still when you can get comfortable due to the pain.

Let's pray that those treatments work for you.

Ada

im the same why love to read i just cant stick with it anymore and it drives me insane i love to read but so easily distracted

Good to hear from you!
 

I am so glad to hear from you and really happy that you are volunteering your time. That is great. We are all here for as much support as you would like. I'm sure that you taking the time to tell your story will help others to come forward too. Thanks for being here and it really is great to hear from you! Let us know how the treatment goes.
Hang in there di