Hi All~
I look forward to meeting many new friends here, as I now realize I have put off joining a group forum like this for way to long. I fell and broke my left patella(knee cap) Oct of 2001, had burning pains in knee that far exceeded any torn miniscus or other. I knew this from having miniscus surgery on right knee in high school and this was nothing close to the same.
From here, I was passed over by my doctor saying it was just arthritis, said she saw nothing in the x-rays, and being the stubborn Irish gal I am, I would not except this and said I want to be referred on to orthoped! From there, he was angry at the fact this doctor let me walk around untreated with two fractures in my knee for months...
Next, Mri's done to check for soft tissue damages as well, which there was(I had a 3 in mass of tissue ripped off floating around behind cap and torn up cartalidge, so he said this would of course require that ol' scoping surgery many of us are so familiar with.
Problem with this, by the time 1st surgery time came my leg was totally on fire. After this was done the pain got even worse? He was really getting puzzled at this point since he knew he cleaned up all damaged areas and fracture should be pretty well healed by then! He said we can take one more look in there Traci but I dont think we will find anything, if we do we'll fix it ie; re tears, etc. So, on with #2! Right before they wheel me in for surgery he brings in the anthstegs. with him into my waiting room and pulls back my sheet and said let us take one last look at that leg. My leg now was purple and blue? It was known to do this often now, go red to blue to purple. Then they said were going to do an epideral on you for extra pain just incase?
I had no clue why at this point, I had never heard of ever having to have this much numbing done for a scope. So they go in, then bring me out. Found nothing. But in his own words said "We know she has what they call AN ANGRY KNEE" and he then was confident to say she has what they call RSD! They could'nt give me enough injections to take the pain away after this stupid scoping last time around! It was a nightmare. I think I used up there years supply of fentenol and vicodins.
Nearly 8 years later, hear I am. with many more stories, treatments to tell, experience under toe to hopefully help others just starting out! I know there are many out there worse than I but each of us are hurting beyound what any living thing should have to, thats all I know. And, I believe my new theory to be a very strong one! Labratories and testings are great, but if the rats don't talk back you might as well throw away the beakers! So, with that being said, I will leave you all for now, but must say I believe the strongest weapons we carry is our daily experiences... We have to learn to make our doctors and loved ones listen to us, but do it a fair and honest fashion. Don't hold back some of the real things we are feeling but are afraid to tell anyone, quit feeling like you can't tell your doctor all your symptoms each and every visist! You must! Because they change constantly from visit to visit. Keep a journal log, date it daily, write the pains and problems you experience. Then take the collected data to your doctors/specialists and they will make copies for your medical file! Take pictures of your color changes, skin rashes, blisters, etc., as these also come and go and doctors can not possibly catch this all the time. I tell you this because my story has many professionals who claim to know what they are doing, or call themselves doctors but are themselves just as puzzled as we are about the whole thing! At the same time they naturally/not intentionally always tend to think that such a major, multi-symptomatic, complex disease must be somewhat made up at times or added to, exhagerrated whatever you want to call it. Remember they are also just men and women and could get RSD just as easily as we did and hopefully never will.
In the mean time, peace out to all of you and anyone who has a loved one or family member serving in the military for us. Tell them I say "Thank you for Their bravory".
What they do every day is probably the most inspiring thing I could ever ask to see in action as far as endurance and strength goes. And when I can't get out of bed some days and wish I could just (pardon me for saying this) shoot my leg off because the bone pain and spasams are so unbearable and theres nothing I can do to make my leg and foot get warm... I think of how our men and women over in the middle east don't have beds to sleep in a lot of nights, and no showers to soak in, no computer access, no phones, cleaneness(you can throw that one out the window) they can't take showers either. If they get hurt they make do, and they don't get to come home for who knows how long... And to top it off, no matter what skeptics think or say over here, they belive in a cause! And they will fight to the end for it! This last part of my message was meant to inspire us not discourage us. People like this can be the best examples of "Love in Action" "Hero's" "Strong&Meek" "Humble". This is how we need to be in our battle for our lives again! We love our lives in action and want them that way! It takes strength and meekness to walk in enduring times. Yet we must remain humble to all others in pain no matter how high our disease ranks on the "MCGILL PAIN SCALE" at a whopping 47! (all other pains well below RSD-thus RSD being still recorded as the most painful disease to date!
So, remember, when your feeling whipped and beat. Dont forget you are taking on one of the biggest physical challenges you ever possible could in your life and your doing it! Others are watching us, and those who are also finding out they have it and who have it and don't yet know how to identify it need people like us to make everyone aware of this problem that does'nt seem to be going away for now.
However, I must say the newest "hyperbaric chamber" treatments do look most impressive along with the sucess rates!
I warned everyone, I talk to much!
and this was my quick response...(hee hee hee)
God Bless all you fellow heros and tough guys and gals out there!
Traci

Hi everyone! Unfortunately I am not new to RSD. I had two episodes when I was younger. One when I was 13 and one when I was 18. I had rsd in my leg and foot, and with both occasions it came on suddenly with no injury. These episodes only lasted a few months and then went away. I am 32 yrs old and having my 3rd episode of RSD and this episode is the worst ever. My story of my 3rd episode sounds amazing and unique to everyone I tell it to including doctors. So here it goes. 6months ago I woke up with major swelling in my riight leg and ankle. And again I did nothing to cause injury. I didn't fall or get injured playing sports, nothing like that. It took 3months to get a diagnosis after seeing many doctors and getting many tests done, as I;m sure many of you are aware of. I have been going for pool pt which hasent been helping. With the amount of pain i am in daily it is very hard for me to bear weight in water let alone on land. One of my doctors has me on Lyrica but I am not noticing any improvement with that either. I have had 1 nerver block done and didnt have any luck with that either. My doc now is doing a treatment where a cathreter is inserted into your spine to have daily injections of steroids (i think) to try and reverse the rsd. He is also numbing my foot and leg and trying PT that same day to hope the PT's can work with me and my pain threshold a bit easier. But again I am not having nay results with that. My doc also wants me to take Cymbalta and to try not taking the percot. So I will see how well this goes over. Will post more later when I am feeling up to it. Can't sit in a chair for very long. I look forward to chatting with everyone. !

Hi Traci and Welcome!

I'm so sorry you have RSD. I've had it is '96 following surgery but didn't get a 'wrong'diagnosis till 2000 ," well what do you know, RA" but no rheumotoid factor in blood. That doesn't make sense, so I fly a few states away to sports injury Doc, 'ortho' and he says RSD in 1 minute followed by positive testing. It's wonderful you found this site, full of loving compassionate friends, lots of knowledge and understanding going on here.

We have a couple who have HBO in their home and are doing quite well with the treatment. I have talked with Diana A and was very encouragedd. Asked my Dr. about the treatment and he is very enthusiastic about it. currently building two clinics and putting in hospital grade HBO. He is a Neurologist, Pharmacologist, and Psychiatrist. I've been going to him for about 5 years now and have lowered pain level, no depression, and no spasms, electric jolts, jerks, etc that I has having dailey. Cymbalta 60 mg. is only anti-dep. I take. WAs on 2 double and thriple dosed antii-dep. before. Was on 3200 mg. ofNeurotin and now take 100 Lyrica. Vicodin for pain . I'm not saying I have really bad days, but am doing better. Last couple weeks were the worst in my 12 years. Have blisters for the first time, big ones.Thank you for the picture idea, and of course journeling. I have full body, generalized plus trigimenal nerve on left side, plus fibromyalgia.

Do you have a support group in town? or someone to talk to in your area? You are welcome to PM anytime. Have you had any spreading? I haven't had surgery since my initial breast biopsy that caused left arm swelling, followed up with left frozen shoulder and 100 PT and massage therapy, followed up by right frozen shoulder and more PT. I have found massage therapy to be very helpful, plus other distractions like scented candles, music, petting my kitty, reading, writing cards and phone calls to others that are alone, elderly, chronic pain, etc. My Dr. is wonderful and see him once a month, pain management. I try to stretch dailey and meditate. Spritituality is important to me. My husband is very supportive and we have a daughter that is knowledgeable and supportive.
I used to dwell on all the things we used to do as a family, Our daughter and I traveled a lot too, and also our son-in-law. Haven't given up hope on that.

Please know we all care and are so happy to see you with us. 'not too long for me' Loretta Jewell

Hi Superduck95!

Hi Superduck95!

I guess I punched the wrong button too early. Anyway, welcome to NeuroTalk. You'll find so much comfort and encouragement on this forum. So many wonderful, encouraging friends and knowledgeable, caring, sympathetic and understanding friends. It's good the 3rd time around you got a diagnosis. It was my 3rd time around too, the first 2 'spells' were from surgery and the third was from water skiing on my left hand. Misdiagnosed and didn't get pt soon enough, so have a claw for a hand, but at least can cut my food, and put on clothes. I also found warm water therapy in a pool wonderful. We have a heated pool and I spend a lot of time in it, especially in the summer. swimming helps so much to keep from freezing up. I have full body. 32 is young. Hopefully you can get it under control. I believe the first two times I had so much pt and massage therapy was responsible for getting the use of my arms back and also touch therapy allowed me to get use of my limbs without being sensitive to touch. At the stage I'm at now, I have a lot of skin lesions, and now blisters. I'm checking into HBOT. My Dr. will have the first two units in my state 'out of hospital' His are hospital grade. Now, hoping my insurance will cover this treatment.

Percocet, I know you are in a lot of pain. The Cymbalta helped me, So did the Lyrica, but now am going down on mg. of Lyrica to 100................ Do you have blood pressure issues? Many do because RSD is a autotomic disorder, affecting involuntary organs I have both high and low blood pressure. High is the sympathetic nervous system and low is the parasympathetic nervous system.

Hope the best for you and don't give up. You'll hear from a lot of friends from here. May be a bit slow because of time of year, but it will pick up. Take care, Loretta Jewell

hi im carrie i was 16 when first got rsd from car accident 11 yrs later whole body organ involvement i used to go to the mass general chat light years ago i swear. i live in tennessee now have 2 great girls and a wonderful husband. the only thing that keeps me goin is those 3 ppl and the fentlyn (sp) pump i have had for the past 5 yrs. and finally having great docs. ive been thro so much since rsd its unreal just to look back at it all and to think that i thought 1yr of rsd would be horrible 11 yrs has been unreal. always think forward one day they will find something that will help (hopefully !!) and more long term thanks for listening to me ramble

-carrie

Hi Carrie,

Just wanted to say Hi! I'm happy for you in having a loving supportive husband and two girls. I am sorry you have rsd and especially getting it at such a young age. We had our one and only daughter at age 31. She is 29 now and a wonderful encouragement. She and my husband have met my Dr. and also did their own research on rsd. That really helped them to better understand. I'm hoping to try the HBOT when my Dr. gets them installed in his two new clinics. He is also doing more research. He is a Neuro. Psych. and Pharmacologist. One med that has really helped me is an anti-anxiety med, 2mg. 3x day, Lorazepam, keeps me calm and less pain. Hope you are having a comfortable day- Take care, Loretta Jewell

hey loretta
thanks so much. it was hard but found out quick who true friends were that is for sure. yes i am lucky to have such a great family . it would be aot harder if i didnt trust me .. the two docs that treat my rsd are a neuro and pain managment. they but are doing current rsd research and but very excellent docs i got luchy here in nashville when i moved . wouldnt be alive if it werent for them .. where are you at again ?

-carrie

Loretta~
thank you for responding so warmly to my intro. I have no clue really what I'm doing in here as far as all these different "inner chat" supports, and "friends" and so many other things to do as far as this whole profile page it looks like yet. So, you'll please have to excuse me if I appear scatter brained and short minded. I am. (smile)
I am happy to hear you are also blessed with a family of love and supportt. I just recently placed a post to a lady regarding discouragement today. If you want to check it out I think you can get to these things through viewing our profiles can't you? I'm not sure. Please let me know if that's even possible for future reference.
I forget what I am talking about easily, just to forewarn you ahead of time. And can tend to bunny trail at times, simply because I talk alot! Just tell me to be quiet (Heh-Heh-Heh).
To answer your question about all over body rsd... My "pain Management" doctor #6 who won't do any invasive procedures on me what so ever because he says I've had them all and it would be a waste of time and a shame to put me through all that pain again if they did'nt last (ie; rhizotomies, symp blocks, bier blocks, trigger pts, ice baths/hot steam baths contrast/which was totally stupid by the way).
He said if I would have come to him a long time ago, like back in 2002, instead of the other PMS's, he would have been able to help me alot more with his aggresive "9" block series to the symp chain. So, he just tells my husband and I that I will have this for a long time, and that It could be worse, and at least I'm walking and using it since I listened to their advice and exercised the crap out of it years ago. Ultimately, me getting more use of it back is credit due to God, and him giving me the stubborness, and "good" anger that I needed to remind that I did'nt want to lose my legs and their mine. He gave them to me, so I shall fight for them as hard as I can & want. Question is'nt so much can we, but do we want to fight each day. In this sick kind of unexplainable pain it is so easy to just throw in the towel. But, it seems for me personally, Since I started asking God to channel all that pain into motivation, and that if He did'nt do this for me I knew I would die. I told him, I will move, I will pick up my matt and walk like the man waiting at the healing pool in the Bible waiting to be healed! Funny, the whole time he layed there on his mat it says when Jesus asked him why don't you get into the pool? The lame man blames the other people around him that also are in need of healing but are in fact doing what ever they need to to get in there. The man just says they are always in my way therefore stopping me from getting in. Jesus "DO YOU WANT TO BE HEALED"? and the man says yes, then Jesus says, "THEN PICK UP YOUR MAT AND WALK"! All along the man had put his faith in hopes that the pool might have healing powers. When all along The One/Savior/Jesus standing right in front of him "HAD HIS HEALING FOR HIM THE WHOLE TIME"! How cool a story. Anyhow, that gave me so much hope to move it or lose it! So i did. Move it that is. Did and does it hurt? Do we even need to ask? What I have done in the last 5 years to these two legs let alone this body to keep it is none the less a miricle. And thats it...
Yes I still have symptoms, and some pretty bad ones, yet some seem to have hidden away a bit. but my limb is stone cold and has been for years now. Oh well. Ive still got it.
Oh, also, another helpful tip. I promote healthy foot care first and foremost to all of us! Since our tempretures escape from our head and feet the most, they are usually affected the most though we tend to neglect the both of them.
I also do my families feet when I'm able to. (pedi's) I have a dremel, all the fixin's for home use foot care and then some. But, you want to make sure you are soaking your feet in EPSOM SALT. As often as possible. It relieves tired muscles, bone aches, cleans, disinfects, promotes circulation and is very cost effective. Check it out on a web hit for: RSD Puzzles, vero beach florida.
These doctors are amazing and have helped my locals in some situations to boot!
Well later for now,
keep movin with a friend,
traci

I have been diagnosed with RSD in the left leg (knee, down). Simple injury at work when I hyperextended my left knee while running some stairs. Doctors couldn't figure out what was causing the pain in the back of the knee as I continued to work in some pain for 2 1/2 months. Exploratory surgery! Two times, after the first one did nothing. Waking from the second surgery was life-altering to say the least. I had never felt anything like it.

Indescribable pain.(I am a chef and am used to cuts and burns that hurt alot) Pain has taken on a new meaning. I have gone through the crutches, canes, PT, Lumbar Symp. Blocks, Fentanyl patches, Lyrica, contrast baths,needles in my affected limb, etc. Did I say life-altering? By the way,
I am 32 years old with two young children, one a 5 year old boy begging to run with Daddy.

Enough of that. This is a worker's comp. claim, so I do what they tell me to do. And I have. I saw an "independent"?????????medical doctor. He, in turn, gave me and the insurance company(who he works for) 22 pages of lies about my situation. Is this legal????? I guess so! I did what he said, as required by the system. On the second visit to the same doc (??????)he wrote in a report that I am "FINE, cut his benefits off and send him back to work". "It will help him Psychologically."

So I am cut off. What now? Time will tell. This is out of my hands now. I am going to continue pressing on as best I can, and run with my son and daughter in spirit. I will cheer them on. I am hoping that they don't remember the early times of this disease of moping and anger and feeling sorry. This is now in God's hands. He will do just fine with it.

I may have stirred a few things up here. I'll start by saying that, I live in the state of Kentucky. I have aquired an attorney and we are in the middle of a tug-of-war. I did not mean to sound as though I was bad mouthing the insurance adjuster. Even through all the junk that I have been through, I still tell doctors and my attorney to tell the adjuster hello and that I appreciate the assistance he gave me while I was allowed to speak with him. (once
hiring an attorney, you are no longer legally allowed to contact them) He was more than willing to speak with me on my terms. I educate myself to the situations I am in and I adapt to those situations as they arise. My adjuster went so far as to tell me what he would do in my shoes, and where to find information supporting those opinions.

I was also told that I needed a pulse rhizotomy and what led me to discussing
this option. According to my PM doctor, the SNB injections are given
in a series of up to 10 blocks. I was getting relief from them
anywhere from 1-7+ days. The injections were done once a week for
three weeks, skip two weeks, then again once a week for three. At
the beginning of the fifth, I was in some pretty serious pain
(nothing like the results of the earlier ones). They told before
beginning the series that if they stopped or lessened in the pain
relief that the injections would stop. I know that these injections
and their expectations are strictly based on indidual status. This,
like alot that we are dealing with, is case by case basis.

Pulse Rhizotomy is very similar to these injections. The difference
as I understand it, is that once the needle is in place at the nerve
chain ganglion, rather than injection medication, a wire is inserted
through the needle and radio waves are aimed to the same ganglion.
This deadens the nerve chain, "putting it to sleep", in hopes that as
it come back to full function "wakes up" it will reset and function
properly. The PM doctor told me that her success rate with this
varied from approximately 5% of people who leave feeling the same to
worse than before, 15% had worse pain upon leaving which slowly
became quite a bit better over the course of a week (once reaching
the "better" it remained better), 80% felt relief instantly upon
receiving the rhizotomy. She said that the procedure would usually
last, in whatever state it affected the patient, for one year at
which time they would repeat the rhizotomy.

The reason I don't know what the procedure could do is........
Worker's Comp denied the procedure then cut me off. An 80% success
risk sounds great to me. After all, I begged them to just get me
back to work. I have worked my way up from a dishwasher(starting
position)in a fast food joint, to the Executive Chef at many
restaurants and a lead position in one of the longest running 5-star
restaurants in the country. From the age of 13, I am a self
proclaimed workaholic. I would say that over my 17 years in the
rest. business, I average 80-90 hours per week. I love it. I just
wish they would ask anyone I have ever worked with or for. It would
be great to storm back into a kitchen. I have almost 2 years of a
bed, crutches and a cane to make up for. One more thing, I HAD
NEVER, IN THOSE SEVENTEEN PLUS YEARS, MISSED EVEN ONE DAY OF WORK. I have work ethic and I just wish someone would realize it.

->I guess the major issue I have with this whole ordeal is that the
insurance company has sent me to said doctor, he is an "independent"
examiner. For this "doctor" to come back to me with a report,
literally 22 pages of out and out lies regarding my injury. He
twisted my words or flat out omitted my words only to use his
instead. He started in the very first line of his report by stating
that I had said that I injured the opposite leg than the one I
injured. I won't get into all that he said, but when my PT read it he
was nearly as angry as I was. All the work he had been doing to help
me keep my RSD symptoms in somewhat control, he felt it was a slap in
the face. Two doctors who were treating me at the time were as well.
They filled me in on the Ind. Med. Examiner way of life. If your
insurance company gets to them first, they say what the ins. co.
wants to here. If the attorneys get there first guess what the
findings are. Neither is better in my opinion. I am an honest and
hardworking man and nothing can change that in me, no matter what
they do.

With the internet at our disposal you can find some pretty
interesting things about whomever you wish. I found that the expert
medical man that they were sending me to was a retired hand
surgeon/doctor. He was not in the interest of finding out what was
wrong with my knee, nor was he experienced in pain treatment. I
would have at least expected an orthopedist or PM experienced doc.
At least the "IME" that my lawyer is sending me to is a retired
PManagement doc. He spoke with obvious knowledge of the pain
aspect, he wasn't much more clear than the first on what to do about
the initial mechanical issue with my knee. I am interested to see
what his report has to say, I should have it this week.

One last thing, when I am able to retrieve the court dockets on the
insurance company's IME, and see that he has been involved in
overruling practicing doctors opinions in court(it is all out there
to find with a little snooping), and see how many time he has been
utilized as a tool of the insurance, it is rather sickening to me.

How is this legal. Do they not recall the Hypocratic oath that they
took? Not only do I feel that it is illegal practice, but I feel
that it is immoral. For the insurance company, and attorney the
same, to support such practice is where I say my issue lies. If
there is anything I can do about that I am open to suggestions. I am
not hopeful for resolve in this part of the game I am being forced to
play.

My medical and medicine and compensation has been stopped. I don't know exactly what will happen. The injury took place in April of 07. The
surgeries were in july and august. I didn't contact an attorney
until January of 08. The IME was in July of 08, the first one. He
recommended that I seek aquatic therapy and PT. I did both. I also
joined a local gym to try to work on some strengthening. My quads
will not strengthen. I saw the IME again in Oct. 08 He then said
that I was fine. There is nothing wrong with my knee. There is no
RSD, despite the ama guidelines. He says that I show no symptoms. I
have six other doctors that have documented that i do have ALL the
symptoms, or at least have had in the past. Here recently, with the
cold, the ones that had slacked off are coming back with a vengance.
I have a positive 3 phase bone scan, x rays showing osteopenia, MRI's
(three) showing progressive atrophy, and on and on and on. I do not
understand how this is legal. I think that is my main gripe through
this whole ordeal. Is there anyone I could complain to? I guess
not. As far a the video taping me, I have no knowledge of them doing
so. But, if they would I will put on a tracking ankle bracelet to
let them know where I am at all times. If they think that my life
the way I live it, is that of an average 32 year old man (let alone a
workaholic, verifiable by anyone I have EVER worked with), I would
love for them to video tape it and take it to the judge when I get
there. I am very uneasy about going into court. Not for anything
that I have to hide or am exagerating, but rather for fear that the
judge is somehow involved in this crazy game like the IME's and the
lawyers. I have a real hard time trusting anyone involved in this,
after all it is affecting the future of my children. A future that I
was well on my way to providing them and now it is all just withering
away. I will do the best I can and leave the rest in the hands of the
man up above. This has been great talking with you today and
tonight. I can tell that there are some knowledgable and forthright
people on this group and I look forward to talking with you all.
Oh and I still go to the gym on my own for now. The contract is up
end of January. I have no compensation so it will end too.


I look forward to chatting with some of you on the page here. After just a few days I can tell that this is going to help precicely when I need it. Thank you all for putting up with my rant. It feels good to punch this out on a keyboard. It made me feel better to get some things off my chest that I try to keep bottled up around family. Thanks J.