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

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.

hey fishnchef i live in nashville have had rsd for 11 yrs now how ya feel i dnt have workmans comp but had to go through 5 yrs of legal to get a tiny bit of money from the car accident that caused my rsd in 98. also i have 2 young children two girls 8 and 5 i know what you are feeling both my girls only know me as sick it really hasnt made their life any differnt except maybe a couiple more chores here and there. kids are pretty rezliant to sickness. fyi there is a great pain managment doc at vanderbilt in nashville that i see he used to work at the va he isa neurologist and pain managment very through very smart and very up to date on treatments he is on a couple boards for pain managment and rsd treatment ..
i ahve had every treatment know to man except ketamine .. i know have a morphine pump that has fentnly in it due to the fact that i am very deathly allergic to morphine .. i would keep the pt up.. for pt i use the kids try to stay as active as you can be .. i does help trust me.. im am gald that you found this site. so sorry that you are having a hard of things.. so sorry that you had suffer from this horrible diease


welcome

Hi everyone,
I'm Jenny and I'm here because my husband was injured on Jan 8 of this year by an accidental gunshot wound. The bullet seems to have hit his sciatic nerve up high in the leg and he has been experiencing severe pain in his foot ever since. This morning we finally saw a neurologist who diagnosed causalgia. I had never heard of RSD or CRPS until this morning and I've been on the internet all day reading stories like yours. My gosh, I am amazed that some of you have been dealing with this for decades! It has been just less than a month for us and it's already seemed an eternity.

This accident happened one day before my husband's last day of work at his full time job, which he was leaving to pursue is dream of joining me full time on our small family farm. He has been on crutches ever since and the pain is so bad when he stands up that he can only be out of bed for a few minutes. I have been caring for all the livestock and our two young kids who are homeschooled in addition to all the housework, taxes, bills, etc.

He has just started gabapentin and we have an appt. with the pain clinic on Wednesday. Is there anyone here from the Albuquerque area who can recommend a Dr?

I am terrified not just by the pain component of this but also the depression. He was already suffering from bad depression before this happened. We were hoping that getting him home on the farm full time would help this. Now he is facing the possibility of never ending chronic pain and doctor visits, which he hates, and not being able to do anything on the farm, not to mention the financial stress this will cause.

One good thing is that he has been getting regular massage therapy since the first week of the accident. He is trying to bear weight on the foot and the massage therapist is able to do a lot of good stretches and work out the cramping he gets in his calf.

I'm glad to have found you. I'll start by asking if you have any advice for our pain clinic appointment on Wednesday.

And please know that I believe you when you say how painful this is!

Thanks,
Jenny

Hello and Welcome to Neurotalk Jenny - I am SO glad you found us, everyone here is so nice and friendly and I am sure will be more than happy to help you in anyway they possibly can!!

I'm so sorry to hear that your husband has been diagnosed with RSD/CRPS! I have RSD in my left leg and right arm, I developed it when I was 12 years old and am now 14!!

The "lucky" thing for your husband is that he has been diagnosed VERY quickly - unfortunately, it can take a lot longer for some people to be diagnosed and some people are left to suffer in excrutiating pain for years without a diagnosis and by that time, it is too late to do anything for them! It is extremely important that RSD is caught and treated very quickly - Doctors say that the best chance of reaching remission is if the RSD is caught within 3 months so please take that to heart!!

I wish you and your husband the very best of luck with his upcoming appointment and really hope you can get some much needed help! Please don't be afraid to ask your husbands doctor ANY questions that you have ... it is really important that you know what to expect and don't ever be afraid to ask anything, no question is a bad one!! Also, don't let your husbands doctor do anything that you aren't happy with - it is REALLY important that your husband makes his mind up as to whether he wants to go ahead with a certain procedure and no-one can force him into doing anything!!

Please make sure your husband moves his foot and leg - I KNOW it hurts a lot as I have been there but it is probably the one thing that will help in the long-run! I have another neurological condition called Dystonia on top of the RSD which means I can't move my leg at all and it makes any Physical Therapy extremely difficult!! Also, please tell your husband to touch his foot and leg so that it doesn't become too hypersensitive - if it is already hypersensitive, start by touching it really gently with a nice, soft material and then build it up as and when he feels as though he can tolerate it better!!

As for the Depression, unfortunately a lot of people with RSD suffer from it as they are frustrated that they can't do what they want to do etc etc. I was VERY depressed a few months ago and felt like life wasn't worth living and it was extremely difficult to try and overcome it!!!! I see a Psychologist and she has helped me quite a lot ... that's not to say I still don't feel depressed and angry, I do but I have "learnt" to try and deal with it better through exercises that she has given me!!

If you ever need someone to talk to, please know that I am here for you both!

Please keep us all updated when you can and im sending your hubby many pain-free hugs!!

Alison.

Oh Jenny,
I am so very sorry to hear of your husband's accident. It is VERY good that he has been diagnosed so quickly, and I think it is an extremely encouraging sign that he is able to put weight on the foot so soon and is already working with a PT to stretch the leg.

I developed RSD in my left ankle after surgery on Dec. 3 '08, so I haven't had it very long myself. I have already had a series of sympathetic nerve blocks and the swelling is under control. I do have nerve damage in my left foot from the surgery, and the RSD has spread to my other foot, but I am not experiencing as much pain in the right foot as the left. I credit this to early treatment, just as your husband is getting. I can walk slowly, without a limp, and am able to get most of my chores done.....maybe not perfectly like I used to......but well enough.

Ali is exactly right about desensitizing the foot and leg. He needs to remember that even though it HURTS like fire (or glass or whatever) is being rubbed into him to touch it, that it is just the nerves misfiring and sending false signals to his brain. The more quickly he can desensitize it to get used to being touched and used, the more mobility he will retain in the long run and the more quickly this can happen.

Regarding the depression, he absolutely needs to be put on a good antidepressant if he's not already on one. First, some antidepressants are proven useful in treating depression AND pain in RSD. Second, lingering depression will only further discourage him from doing his PT and moving on with his new life. Chronic pain and loss of function IS depressing.....he didn't choose this nor did he do anything wrong to get RSD.......it just happened.......it is not his fault.

Every one of us here has had to adjust to the various changes that RSD has imposed upon us. It is so good that you found this forum, as there are many caring, supportive, and knowledgeable people here to offer support or guidance. Better still, this is a safe place where you can get a lot of understanding and compassion.....we all know how this feels.

Please feel free to post any new questions on the general forum that you may have. It is so wonderful that he has you to be so supportive of him. You BOTH need support to adjust to this diagnosis, especially since you have had to take over so many of the other responsibilities. Try to remember that you guys WILL be ok. It may alter how you go forward in your immediate life, but many people with RSD and on this forum still manage to lead productive, happy lives......perhaps just in a slightly different way than planned.

Try not to look too far into the future, but take it one day at a time. Our greatest hope is that your husband responds quickly and positively to treatment. Please remember to take care of yourself as well. You must be forgiving of yourself and your personal limitations right now......accept help from people that offer (is there family around you??).....get as much rest as you can in between tasks.....you have to regroup your priorities realistically and remember that you're just one person.....you can't do everything perfectly as though you were two.

Regarding specialists......there really are none in the area of RSD, although there may be doctors that are familiar with treating it. A good Pain Doc that has been successful treating RSD in the past is critical. If yours isn't, be willing to travel some to get one that is. You already mentioned that he has seen a neurologist and a PT. It sounds like you guys are doing all the right things! Be careful not to read too far into the disease and "project" all of that happening to him in the future. That is overwhelming and depressing. Simply accepting where you are now is struggle enough.

Please keep us posted on how his visit tomorrow goes. Ask any questions you want to.....spend some time reading other posts on this forum. You can do a "search" on a specific topic you may be interested in (option available on the blue bar at the top). We are all here for you!!! Hope to hear from you soon!

Hello everyone… My name is Jacquelina… I have RSD and TOS…. I was diagnosed around 2 years ago for the TOS… I was in constant pain with the TOS for almost 7 years.. Only took them long enough to diagnosis it… Following that I started having swelling and skin color changed., flowed by sweating profusely…. 3 months after my TOS dx came the RSD one.. I was dx with Bilateral TOS and RSD on the right side…

I cant tell which symptoms belong to what condition … The worst one or at least as of lately:

-I am having swelling that starts from elbow up to the shoulder… Like 4x normal size.. And the bottom half of my arm from the elbow down is just white..
-swelling
-hot all the time/ with just the tips of my finger swelling.. And very cold..
-skin hot to the touch
-Molted skin changes
-Depression
-Trouble holding and writing things
-Pain levels in the high 9-10 for the last month..
-Pain from the surgical site
-Under neither my armpit is so sensitive I can barley stand to put deodorant on … and most days I don’t because of pain..
-this is one of the most painful parts…
-I will have episodes where my hand will cramp up so tight I can get it on done..
-Fire feeling in my arm of course…
-Intense burning numb pain … sometimes it feels like I am sticking my hands in glass….

Those are the symptoms I can think of right now… As for things I have tried.. I have had 4 blocks with relief for only a few hours… I have had a right rib resection with removal of part of the scalene muscle.. No relife from that what so ever.. Actually made things worst for me I think…The surgery its self was very painful and with the high tolerance to meds that didn’t help the pain at all.. I have had 3 keatmine injections… I have tried 8 different types of physical therapy and have swore to my pain doctor I will never have PT done again.. My god is it painful and ineffective… NEVER EVER AGAIN WITH THAT LOL… unless I go forth with the possible 2 rib resection on the other side then I will do pt for that part I guess..

Right now I am currently on the following meds::
Percocet 6 daily
Opana 60 mg
Topmax
Neroutin 1600 mgs a day
Hydroxine
Levythorixine
Flexiral
Allergy meds
Volatar gel
Cymbalta
Blood pressure meds Metropol
And vitamins… Milk thistle, vitamin E, calcium, flax seed, olive leaf, lysine, Fish oil, and some other ones… *** but may I suggest that all of us start taking the milk thistle.. It is great great great for your liver.. And with the medications we are all on we for sure could use something to help clear that out… I don’t know how exactly it works but my doc suggested it..

Wow Jacquelina, you are on a LOT of meds.....some in the same family. I am SO sorry for all of your pain and problems. It sounds like things have just gone from bad to worse with you. Do they suspect that the TOS (which I had to look up and am pretty sure you're not referencing "terms of service"!!) caused the RSD??? Or the surgeries you've had to try to repair it??

Have you tried a SCS??? The key to proper PT in an RSD patient is getting good pain relief BEFORE attempting PT so that you can improve your ROM and strength. You can't get a limb moving if you're guarding it from the intense pain. Was your PT experienced working with RSD??? Otherwise, you're just going to exacerbate the RSD (which I should call CRPS, but I'm lazy and RSD only requires capping and typing with my left hand!!).

Have you been to the sister forum on Neurotalk for TOS??? I think that all of your symptoms could be the RSD.....they all match what many of us experience here......I am just so sorry that you're so disabled by your pain/condition.

Thank you so much for telling us your story (to us newbies who may not have known you before). Please keep in touch and posted on your progress. I hope that they will find a different medicinal approach that can help you regain more of your life. Best wishes!! Please post any time in the general RSD forum about anything that may be of concern to you. We are all here to help each other out.

Jacqueline, We have some thngs in common. I had tos surgery w/ sympanthectomy 20 yrs. ago , for 15 yrs I called the rsd "my nerve damage" The surgery gave me back the use of my arm and alot of the pain was gone. I had other injuries that kept me "couch ridden" for several yrs. I have dealt with alot of your symptoms and have gotten relief with some and learned to live with others. Did you have surgery under both arms? Do you sweat at all? Do you do any jerking?I also had problems with PT and different exercises I've tried over the years. Scar tissue can be a huge side effect that effects everyone different and cause it's own problems. The best thing I did was see a massage therapist. She was very experienced and had a school. She taught me more about my body than anyone. We end up with scar tissue simular to someone who has had a mastectomy. between the frozen muscles(neck back right leg) and s car tissue I had alot of spasms, pain, jerking, toxin build up. you also get referred pain ( a tight muscle pinches a nerve causing something else to hurt) I saw her 3 times aweek for several years. It was painful and I was nauseated afterwards( release of toxins) i even drained thru a place in my back and one in my arm. My body couldn't get rid of all the toxins. It was months before I would let her touch my arm and I cried alot but I got better. The other thing I did was see a chiropractor she recommended .Someone on here spoke about using an applicator or what they call the "grostic technique". I was shocked the jerking I had done for 4 yrs almost completely stopped, my colon , interstitual cytistist( i didn't know alot of people had problems with this) back spasms were greatly improved. I have run out of room. email me Would love to talk of skins problelms Denise