Hi there...

I don't know if finding this forum is good or bad. My 11 yr old son was in a freak boating mishap 6.5 weeks ago. Our boat went airborn and he was in the cuddy cabin with some buddies. He got knocked around the cabin and came down hard on a ledge hitting his spine in the middle of the shoulder bones. We heard the scream.

He was diagnosed by the family dr as having a sprain and strain since the xray was normal. The first week, he got better. AT the end of the week (was on darvocet) we let him go to a bday party. Next day he went to physical therapy and then his pain has gotten progressively worse instead of better.

2 weeks in, they gave him an MRI and the Cleveland Clinic said he probably micro fractured two vertebrae - could take up to a couple months to heal. Put him in a back brace for the pain.

Pain got worse, went from vicodin to percocets and ultrams.

After 5 weeks, went back to same doctor who said he was cured and was probalby faking the pain. But in the slim case he wasnt (he is not), it might be RSD and to see a Pediatric Nuerologist and Pediatric Pain Mgmt.

Then went to a party and talked to two friends of family who are adult nuerologists that told me that he was faking it since kids CAN NOT be in pain for more than 2 to 3 weeks - they heal to quickly. And that he was probably just addicted to the percocet.

My son is in all the gifted programs, plays ice hockey, soccer and is well liked - he is not faking!!

During this time went to the CC spine center where one doctor had no idea what was wrong and another doctor said go see your family physician. The family physician meanwhile said - oh you have the Cleve Clinic drs - go see them. Pass the potato the game is called.

Could not see a pedicatric Nuerologist so called up the ped ortho who said - well I will diagnose him with RSD so they will see him faster. So in a month, we go see the nuerologist.

His symptoms - pain that NEVER goes away - constant. Muscle spasms - very severe that causes him to scream sometimes - 4 to 10 times a day. Complains last week that it the pain is burning. We have not been able to touch his back at all in 6 weeks - extremely sensitive. But able to wear shirts and lay on his back. NO DISCOLORATION except mottling on one day last week.

So he does have a couple symptoms but def. missing some of the others. I do NOT want him to have RSD. I read your stories and others and I have no idea how you all deal with this. Had no idea it even existed till last two weeks.

I have heard that if it is found early - remission is possible - anyone know of this?
Anyone been tested for other nerve disorders it might be? I am grasping at straws since it is tearing me apart to not be able to take the pain away.

Please email me if you would like. There is so much information out there, it is tough trying to weed thru it all.

Finally, I have read a lot of the stories on this forum and they have brought me to tears but I am so surprised at the bravery you guys show every day. I hope my son does not have this - but I have found a new disorder to support since after learning about this - you can not forget it.

Happy Holidays. Crunch

I am a lawyer and a former medical school professor. I have fibromyalgia, pretty badly, so I took a lower stress job that doesn't damage my health as much. I know a little bit about living with chronic pain, and enough to know that RSD pain is far greater.

I joined Neurotalk a couple of years ago. I do not have RSD. My best friend does... I'll call her Penguin. Penguin has had RSD for 22+ years, since she was 12 years old. It started with a sports injury in her right knee, and after she had a baby 3 years ago, the RSD spread to her head, neck, torso, right and left arms, and internal organs.

Penguin needs support and understanding, so I decided to learn everything I could about RSD -- research, treatment, medicine, psychology, patient perspectives. I hope I can make her loneliness a little less.

Also, sometimes I feel lonely and scared of dealing with RSD and the 'caretaking' responsibilities. I don't want to do anything to make it worse!

The third reason I'm on Neurotalk RSD board is because Penguin no longer posts on Neurotalk because she found it overwhelming, and scary. So I read it for her and share non-scary tidbits with her.

That's my story.

Hi Everyone,
I am new to NeuroTalk. I was looking up information about clonidine patches and RSD. I am finally getting some relief from my RSD with the clonidine patch. Here is my story:
I was in an auto accident back in early 2001. A tree fell on my car from a tornado while I was driving. I do not remember what happened but after months of being treated with I don't see anything wrong (as the hand specialist in my area stated), the doctor finally examined both hands and realized my thumb was dislocated and my tendon was torn. And he was a hand specialist. After 2 surgeries, one fixing the dislocation and loose thumb and the other was fusing my thumb. The pain did not stop so my family physician sent me to Dr Ostermann, a well reknowned hand specialist from Philadelphia. He was the best. Talk about a doctor that cares, I was at his office at 11 pm and he still took 1 hour to talk to me about my care. He was supperb. He told me that my fusion did not heal properly and that it needs to be fixed or wait until it breaks. He stated that it should not have been fused in the first place. It was a mistake, a surgery that should never have happened. I was so upset, that surgery cost me my job and it was not even necessary. Anyway, he refused my thumb, which is ok now, but my RSD is horrible. Since seeing Dr. Ostermann, I have been to pain specialists, neurologists, anyone that would see me. I stopped 2 1/2 years ago. I was tired of hearing "You can't take the meds that will help so there is nothing I can do for you." I heard that so often that I just gave up. This past August, my family and I were in an auto accident where a young kid hit us head on and down the entire side of our van. I remember the entire accident as I was driving, but I don't remember what I did with my hand. I started doctoring again because it got so much worse (which I didn't think could happen) than it was. A new anestheisologist came into our area from Philadelphia that my family physician referred me too. For the first time since Dr. Ostermann, I didn't feel brushed off, I felt good. He didn't tell me there was nothing he could do. In fact, he laid out a few options on the table and said in two weeks he will have a treatment plan for me. I am now on Clonidine Patches. It has been one week and my pain is getting better. I did forget to mention that I had to nerve blocks also. They didn't help but made my neck and face so swollen that I could barely swallow. I still have the burning and the tightness, but the worst of the pain is almost gone.

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 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

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

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 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