New Member: Story (Possible RSD victim)
 

Hey Everyone,

Im Nigel from Malta, turning 21 this month and have a good chance im suffering from RSD and have been for the past 5 months, still without a clear diagnosis.

After doing research for over 5 months, I came across this forum last night and after reading many of your interesting stories, I believe that I have found the right place to get as much honest feedback and opinions as possible.

My Story:

April 2009:

Basically to cut a long story short, I underwent an ACL & meniscus reconstruction successfully 2 years ago after a fall from football. Although did not do the best rehab, I got back to a VERY active life - gym 5 times a week, work and heavy fishing without any trouble besides feeling my knee tired due to it being weak.

November 2010 (Injury):

Back in November I suffered a 2 day period of strong overuse of my knee and kept on pushing on it when my body told me to stop. Since those 2 days, my knee would always feel exhausted and swell from normal day to day activities like walking and driving. As time went by I developed a thin pain behind my knee which felt unusual. From the time of the injury till mid January I was always able to control the pain - as in I would rest and feel no pan sitting down for a few days then would be able to walk a little and the pain almost went completely for a few days. In fact a month later and actually went to the gym (upper body, no cardio) and drove without any pain, however deep down I knew it was still there but just much more manageable with every day activities. Crutches were used on and off.

(nb - The only position I would be pain free/rest would be sitting down with my knees bent at 90 degrees. Lying or elevating would feel uncomfortable and aggravate the pain)

December 2010 (Progress and setbacks):

I then strained my knee again in December by walking for 40min (was the stupidest thing I have done) and the same pain behind the knee came back, slightly worse than the first time. I then continued the rest period with small intervals of driving and fishing which aggravated the pain but up until mid January, the pain was in my hands and was able to control it even though I wasn’t living much of a life and missing a lot of work. Sleep was also never a problem. Crutches were also on and off.

January 2011 (Increase in pain):

The first 2 weeks of January were very similar to December, kept on resting the whole day and would make an effort to go to work (office work). Also went fishing on the weekends but would suffer afterwards. Around mid January things started to get quite bad and out of hand. The pain started to increase quickly behind the knee when out of a sitting position. The pain also started to develop into a shooting pain behind the knee like a tingling shock when lying down or moving round the house. Defiantly felt like a nerve pain. At this point it became difficult to sleep as laying down trigger the pain. I decided to stop all activity at this point and just do whatever it took to control the pain (sit down as much as possible and keep out of pain) and avoid going out of the house, fishing etc. Did this for 2 weeks and did feel an improvement and my sleep did improve and was able to walk more round the house with less pain. I felt as though the 'injury' was coming back into my own hands again but very very slowly.

February 2011 (Knee Arthroscopy):

On the 2nd February I underwent a knee arthroscopy although I was not for it however my parents though it was the best option. The surgeon found nothing wrong and just did a basic clean up of my previous ACL reconstruction, removing scare tissue and come minor cartilage etc... He claimed that the ACL reconstruction was in great shape also.

Things got very ugly after the arthroscopy, my pain had got much worse and I was not able to control it as i had to keep my knee straight for a week. I also had to force myself to do certain exercises afterwards as I lost even more muscle. I was getting very scary pain reactions at night and sleep was difficult. I also started to shake (like small seizures) in the first week afterwards and was taken to hospital 3 times in 10 days due to abnormal pain with nothing that relieved it, tramadol too. The pain also made my cry for the first time in a century. (The day after I ruptured my ACL and split my meniscus at collage, I was told it was just a sprain and had to walk up 4 stories of stairs to my room and lessons, shower etc frequently through the day and was not allowed to use crutches. So I know what ‘pain’ is and am strong in fighting it). This pain was not a pain I could muscle through or fight through. The more you try and fight it, the more it would fight you. My surgeon was also out of answer at this point and couldn’t explain my pain and advised me to fight through and continue with the exercises and stretching.

After 10 days from the OP I was able to start sitting down and bending my knee close to 90 degrees again with hope that the pain will disappear and subside like it did post OP. Unfortunately this was not the case however the pain did improve in this position.
I also took a decision to stop my exercises and get back to the rest phase and try to improve like I was before the OP. After around 1 week of complete rest and no exercises, the pain calmed down again and was able to sleep much better and was also able to walk round the house without crutches slowly a few times a day.

March 2011 (Roller Coaster):

During this month, I was doing my utmost to keep out of pain and stuck to my plan of complete rest. This was very difficult as during this ‘rest’ period I was constantly visiting a number of specialists (around 10 in all including physio therapists etc). I was also doing a number of painful tests. I was also being pressured into moving as much as possible by my family and also did some aqua therapy. The build up of all the tests, doctors’ examinations and aqua therapy got me into a bad state again and back onto the crutches with many sleepless nights. So much for my ‘rest’ period!

April 2011 (Physio Therapy…hospital)

After all the specialists I visited, they all told me that it was down to physio and that my muscle wastage was the problem. My parents also though this was the problem. Although I knew this was no muscle pain, I had no way out at this point as the rest was no longer working and just had to believe again that the PT would get me out.

We therefore decided to go to a Fifa PT clinic in Rome. I was put on an aggressive program of 2 sessions a day – aqua in the morning and gym in the evening (total of 4 hours a day). I decided to give it my all although the pain was indescribable but I was out of options to what else I could do. I followed the program for 3 weeks, increasing intensity everyday and the doctors and physios were all pleased with my progress although I was constantly complaining of sever pain and something not feeling normal in my knee. I was also experiencing many strange symptoms, especially at night. The doctors kept reassuring me that there is no reason to worry and its all normal and that soon I will be out of pain etc etc. This got me very frustrated as it was clear it wasn’t normal and that the pain increasing was not a good sign.

After 3 weeks of physio it was physically impossible to continue and the pain had changed into a devil inside me knee. I was then taken to hospital as I was not able to sleep for 4 days and the pain also travelled into my left hand causing my fingers to cramp up. I was examined by a team of expert and did every single test there, including full body MRI, EMG, blood tests, brain tests etc etc. Everything resulted normal. All they found were muscle inflammations behind my knee on the inside hamstring and calf muscle (7 cm in all). They also found a smaller inflammation on my left knee however they concluded that these inflammations were not the cause of all this horrific pain. The doctors are still working on my case and are suspecting it’s some kind of pain syndrome.

Current Situation:

Currently im stuck in a flat in Rome with my mother and have been put on a pain medication program by a top pain specialist including Lyrica, Amytriptalin, Oxycodine, Cortisone steroids, Paracetamol and Xanax. Although the medication combined with complete rest have calmed me down more, the sever pain and symptoms are still persisting after 10 days on them and it’s a constant struggle for me and my mother hear in the flat as we are both looking for answers from any direction as to what we should be the ‘plan’.

Symptoms:

• Burning pain behind knee, travelling down to feet. Increases severely when knee is straightened.
• Sting pain behind knee, travelling down to ankle.
• Shooting electric pain.
• Feet feel like they are on fire and change temperature cold and hot abnormally.
• Feet change colour and get red and purplish with motty patches. (Goes when elevated). Lately my feet have started to get more redish and dry and hot throughout the day compared to cold white and sweaty in the previous weeks.
• Veins in foot inflame and throb and feel pressured – leading to heating up my toes.
• Intense muscle spasms which build up into crap in my calf going down to my toes.
• Irregular hear beat.
• Sometimes I describe my blood feeling like acid passing through my vains.

My symptoms have started to build up very slowly since January, only experiencing burning, heating of the feet, colour change etc a few time at night every now and again. Since the PT these symptoms have started to creep up more often and even throughout the day not just at night. Currently my symptoms are being experience constantly 24/7 and keep growing on me as time passes.

We are very aware of RSD and although no doctor has clearly indicated that I have it, there is a very good chance that I have it. My main worry is that I have been just over 5 months now and passed through a lot which have aggravated my pain and symptoms and feel like im hanging on the wrong side of the fence with time not on my side if it’s RSD.

Im just looking in every direction at the moment for answers and advice as to what I should if it’s RSD as I don’t want it to get too late since treatment in the first 6 months is critical.

Thanks all for reading and willing to listen to any advice and or precautions I should take at this stage to make sure I do my utmost in trying to have the best chance for remission in RSD.

Thanks a lot,

Nigel

Dear Nigel,

First, im glad you found us...2nd im sorry so sorry you have this. I have internal RDS on my abdomen also caused by surgery. I have had it 6 years and was only diagnosed 9 months ao, so you are ahead of the game.

I know there are lot of folks here that can better advise you with their stories, but i just wanted to welcome you. this is an awesome place for information and support and to blow off steam and to help someone else.
God Bless you!
Lori

Nigel, sorry about all that you're going through. Others with RSD will post soon to give you their perspective. I do not have RSD, my wife has had it nearly 10 years so I have experience as an advocate. I am not a doctor but can only advice you on my hunches. You may not have RSD, but you could. Not all your symptoms sound like RSD. What it sounds like to me is nerve damage or aggravated trapped nerves somewhere around the knee. This damaged nerve condition can mimic RSD, rectify the nerve and all symptoms go away, not with RSD, however. I've known one person who showed many RSD symptoms for sometime and found out it was trapped nerves indicated by an EMG test. Doctors released the nerve and she was cured, of trapped nerves no RSD was present after all. Nerve blocks is another technique used to rule in or out RSD. However why take a chance, you are correct in that early treatment is the key regardless. Seek out a doctors who really knows CRPS/RSD. Check these sites out for treatment centers, there should be experts in Europe, specifically Germany. These doctors should be able to rule either in or out RSD.
www.rsdfoundation.org/index.html
www.rsds.org/index2.html
http://rsdhealthcare.org/

I pray you find relief and a diagnosis quickly! Keep us posted

jim

Hey Jim,

Thanks for your reply.

Just visited a neuro pain doctor yesterday in Rome. He has examined and treated patients with CRPS (nerve block's etc)..

After he examined me he claimed that although I did show quite a few symptoms of CRPS, there were also symptoms that I did'd have (high sensitivity to the touch or any thropic chages) so he concluded that its more like a trapped nerve and dosent think its CRPS...

On the other had, I have done every single test which does not show any signs of a trapped nerve in the knee...

Is it normal for some patients of CRPS not to develop all the symptoms in the first 5 months?

Still looking for answeres as the pain is increasing daily:(

What struck me as perhaps a trapped nerve issue is the relief you had when bending your leg where you'd find relief. I've never heard of anyone with RSD finding that amount of relief from bending their damaged limb. I've had painful back issues in the past where I'd find relief by pulling my knees up or laying in a fetal position which would relieve pressure on one of my disks. Maybe this is where the issue lies. The bending of the knee was or is relieving the nerve of pressure. When the leg is straight the nerve is then impacted----trapped then untrapped, squeezed then un-squeezed? Can an EMG test detect something like this? I don't know.

As far as showing all the symptoms of RSD in the first five months goes is most folks with RSD do not show all the signs of RSD at all if ever. That's what makes the condition so difficult for the patient and doctor. My wife doesn't show every symptom of the disease, That is why it took nearly 4 years for her to receive a full diagnoses. RSD symptoms can arise one week and go away the next, dodging the doctor's watchful eye causing guilt for the patient.

nigel, I would find every route there is to rule out RSD and get to the bottom of your medical issue. If it is RSD look at kedamine treatments ASAP.

Thats the strange thing, I have done loads of test which have resulted in an exclusion of a trapped/pinched nerve however tats the feeling I have.

At the momennt my pain keeps increasing and is scary especially at night. All the strong meds havent had any afect which is not such a good sign. My leg muscles are constantly dying away due to the inability to move which is another problem.

My father has now planned for us to go to INI hospital in Hannover where I undrwent my ACL rconstruction. They also have a team of neurologists who should be able to concluded what my issue is (hopefully:smileypray:) I just hope they will be able to rule in or out RSD. I will be travelling this Tuesday from Rome to Hannover which is going to be a huge challenge at this point.

As i will not acces to interet once im there, I really need to get as much feedback before i leave, in terms of how my pain in my lower leg compares/differs from other member etc.. At this point I feel that the only real answers I can get are from ture RSD patients who have been through the diagnosis stage...

Thanks,

Nigel

Nigel, My wife read your story and she even thinks the bending-relief of the knee does not sound like RSD. However, she mentioned that perhaps the re-injuring of the knee area including surgery could have triggered RSD. Lets hope not. Do you have any relatives in the past with similar issues? Also, this may be a stretch or even to early to tell, does the weather cause you more pain? Such as approaching storms, the changing of barometric pressure?

Hi Jim, thanks for your interest and help again.

I kind of ruled out the OP causing RSD as i started to feel te painfull nerve symptoms 2 weeks beofre. I even remember icing my ankles and feet as they wer hot 2 weeks beofre the OP. Yes, the OP definetly made all my symptoms wore but dont think it was the initial cause.

Regaring relatives, cant think of any who suffer from something like I have been suffering from.

Not really sure about the weather at this point but the damp does 'bother' me. Things that aggrave are the following:

Stretching & Muscle tensing

Ice (prefer warmth over cold)

Lying

Walking

Any poition out of a seated position with my knees at 90 degrees comfortably

Car rides (althogh im sitting down, my knee is not relaxed at 90 dergrees relaxed. insted the position makes me feel like im stepping on a frying pan!)

Doctors manipulation (pain reaction the follwoing night)

There are others but those are the main ones...

I can describe my pain as though im stepping on a hot coin when moving (behind the knee) thats why I keep thinking there is a nerve trapped somwhere behind the knee..the mystery is that the docs cant seem to find it :(

Would also appriciate if you guys could help me out with the following few questions:


1. Does the pain in the particular limb aggravate in certain positions (eg when extended) and calm down in more comfortable positions?

2. Does the discoloration in the affected limb go once elevated or when mobilizing the limb?

3. Is its possible to have RSD and not have abnormal swelling in the area?

4. Is it possible for some symptoms (eg motty patches, redness and abnormal heating) to travel to the other leg, however not experience alot of pain in it?

5. Is it normal for the affected limb to jump/tick when trying to fall asleep?

Thanks again for listening, just trying to find asweres in what is happening to me as its becoming a real struggle sitting down all day with the pain worsening and not know what is goin on:(

My daughter tried Calmare therapy in Va...we did not have any luck with it but after talking to the salesman I am wondering if it was administered correctly. I know the inventor of the technology practices out of Rome and many of the doctors/salesmen train with him. This is not an endorsement of Calmare, but if I lived in Rome, I know I would take my daughter to see him n the hopes that it might work for her the way it has worked for several others.

Good luck to you.
Liz

Hi Liz,

Thanks for your reply.

We have decided to move travell to Germany on Monday. They should have all the equimpment there hopfully.

Right now im still chasing a diagnosis as quite a few doctors dont think its RSD (not sure they know too much about it) they all claimed that i have the symptoms but not all of them and not too an extreem. I have explained they they have been worseing as time goes by but anyway....:confused:

Was hoping maybe anyone hear could help me out and discuss if thier RSD developed over time perhaps or if all the symptoms come out straight after the injury rather than creep up over the weeks...

My daughter's RSD start was swift and immediate. Had a swollen hand which they thought was MRSA, went in to operate, the next day her hand/arm were extremely swollen, very painful to the touch, color changes etc. Over time it has evolved but the symptoms were just as bad in the beginning as they were during her worst flare. She has been pain free for 6 wks 4 days now with inpatient ketamine infusions.

Liz

nigel, I'll take a shot at your questions. Keep in mind my opinions are my observations of my wife and what I've retained from what doctors have said and what I've learned from others through the years. Others may disagree.
"Stretching & Muscle tensing"
This is a sign of RSD however nerve damage I think could cause this also.
"Ice (prefer warmth over cold)"
If you are referring to placing ice packs, heating pads on sore areas this is not something that is advised to apply to RSD injured areas and nerve damaged areas. I've heard in most cases do not do this especially ice packs, however I've heard some have had little relief doing this but not many at all.
"Lying-Walking"
Those with RSD suffer all the time whether it be laying down or walking.
"Any poition out of a seated position with my knees at 90 degrees comfortably"
Now, this is where I think you may have trapped nerve issues not RSD. My wife never experienced any relief at all positioning limbs with significant relief. I've never read any RSD info pertaining to this.
"Car rides (althogh im sitting down, my knee is not relaxed at 90 dergrees relaxed. insted the position makes me feel like im stepping on a frying pan!)"
My wife doesn't like riding in vehicles because of the bumps the cars takes. It's not the sitting position so much as bumps in the road or taking corners, even though we own a large Cadillac. Even the stress of traffic will trigger my wife's RSD pain more so than the bumps even though I'm the driver.
"Doctors manipulation (pain reaction the follwoing night)"
My observations are manipulation of RSD areas trigger immediate pain-flares that may last days.
"1. Does the pain in the particular limb aggravate in certain positions (eg when extended) and calm down in more comfortable positions?"
I would say no.
"Does the discoloration in the affected limb go once elevated or when mobilizing the limb?"
In my wife's case, no.
"3. Is its possible to have RSD and not have abnormal swelling in the area?"
Yes. My wife's legs swelled from RSD around 2-3 years after she broke her wrist in which caused her RSD.
"4. Is it possible for some symptoms (eg motty patches, redness and abnormal heating) to travel to the other leg, however not experience alot of pain in it?"
In my wife's case yes, the RSD can spread, even though many doctors think it doesn't, It absolutely does, however so does severe pain!
"5. Is it normal for the affected limb to jump/tick when trying to fall asleep?"
Yes, I've seen this with my wife, but my hunch is so could other conditions cause this especially nerve issues.
nigel, there are some doctors here in the States who think that one with RSD must show all signs of the disease in order to make a diagnoses, if not one does not have RSD, however this is false, most people with RSD do not show all signs of the disease at the same time if ever. Different signs of RSD pop up during different stages of the disease through the years. Also, there are doctors who think RSD does not spread. This is also false, it does spread for many, for the minority no, for most--yes. I hope this helps and good luck in Germany!!

jim&suzy

Hi Liz,

THats great that your daughter is now pain free!

My I ask what was the cause of her RSD was and how long she had it before she got her ketamine and was pain free?

Thanks,

Nigel

Thanks alot for answering my questions, :) As I am understaing, i do have symptom of both RSD and a trapped nerve, hopefully not both :mad:Unfortunatly the pain and symptoms keep builing daily...cant take much more:( In two days I will be in a very advanced hospital to undergo further investigation...In the mean time, I was wndering weather I should do some more research and see if there are any RSD specialist in the Hannover area to be on the safe side..Does anyone reccomend any RSD doctors/clinics in Germany?

Nigel, did you check out those websites I posted earlier? Search them closely there should be info you seek.

Hey Jim,

Yes I did look at them quite alot however didn't manage to find a list of available specialist/clinics around Europe. Only found the clinic in USA of Dr.Kirkpatrick.

I am currently trying to find a specialist in Hannover but its not so easy :(

My daughter has had RSD since March 2009 and got it from a surgery to remove a blood clot.
Ketamine has given her more relief than any other thing she has tried in two years.

Ketamine seems to be the best thing out there! First I have to find the cause of the injury and take it from there...no point on going on ketamine without fixing my problem/injury (trapped nerve etc) or would it?

Also wanted to ask weather the peripheral nerves in the affected area of RSD also cause pain or would also be more sensitive to press ets...?

I am not sure your question exactly but for me not just the rsd area is sensitive the near areas are as well. Basically my legs are off limits for anyone to touch. I have peripheral neuropathy as well.
A few other thoughts. In the start getting an rsd dx was also hard for me because I did not have all the symptoms and also did not have an injury or accident for this to happen. At one time I was also suggested it may been a trapped nerve but it turned out also not to be. You stated you had dx tests. Did you have an mir or emg/nc?
I do agree one needs to have all the appropriate tests to rule out or possible dx other conditions. For me I am so dx tested out and have not found the why behind my peripheral neuropathy or rsd that developed at age 28. So now it has been about treating the pain which is obviously harder since there is unknown.
Are they working with any meds with you right now such as neurontin etc?
I think part of what makes rsd so hard to dx and treat is we all are impacted in a different way.
I hope you get some relief and answers.

Hey Daniela,

I seem to be following the same path as you at the moment as I have been just over 5 months chasing a clear diagnosis without anything yet after 100's of tests. My pain however developed after a 2 day period of overuse of my operated right knee, which probably lead to the initial injury (hamstring tendon) back on 21st November last year.

Since the injury, I did not give it the sufficient rest it needed perhaps and the pain kept getting better with rest and getting worse with day to day activities (driving, work, fishing etc). I kept on this pattern for 2 months until the pain developed into something much more sever (possibly when the RSD had started to kick in). Two weeks later i went in for an knee arthroscopy which 'killed me' and tripled my pain.

Since then I have done the following tests:

MRI full body (found muscle inflammations/lesions on my hamstring tendon and calf muscle right knee. Also found a smaller inflammation on my left knee)

EMG, EGG, Ultrasound, Circulation Test, 5 blood tests - All fine. Not to mention being examined by over 25 specialists (doctors, physios, chriropracters, surgeons etc) so I have excluded alot till now.

Now in Germany I will do every other test possible to rule out EVERYTHING.

The strange thing is that I now have pain in my left arm and opposite knee (nothing like the pain in my right knee) and only come when I straighten them or start to use them as opposed to constant pain....

Quick update

Arrived in hospital today. After being observed by a top neuro specialist, he is suspecting that its some kind of nervous system disease following a strain to my knee.

Will start further tests tomorrow to get some more info. He also suggested doing a lumbar puncture...any thoughts if this is risky?

Thanks nigel

After completing all the tests, the doctors have confirmed that my nerves are all 100% and there is no chance of any nerve damage/irritation. Furthermore, they have excluded any other structural/orthopedic problem. Therefore structure and nerve wise I am fine.

They have come to a conclusion that i have a 'pain syndrome' which has hyped up my sympathetic nervous system. However they do not use the term CRPS hear.

He will be putting me on a medication program and advised me to slowly start pool PT.

At the moment my condition has worsened and am close to 6 months now. Would anyone recommend any other 'more advance' or 'more effective' treatment methods such as nerve block or ketamine etc?

Thanks,

Nigel

Hi Nigel, Im sorry to hear about your pain. I have had CRPS for almost four years now and I can understand how the pain can really tear you apart. Everyones symptoms are different and everyone reacts differently. Some people swell up constantly while others goes through periods of hibernation. I just wanted to comment on your question about the symptoms. I had been getting these jolting spasms from the begining but never realized they were associated with my CRPS because they came so infrequent and I also didnt know til a year and a half ago I even had CRPS. It wasnt til recently(past 6 months) that I have associated them with my CRPS. They come around 6 times a day. Like a jolt of lightening going through my body. They hurt pretty bad. Nothing compared to my foot but bad enough to make me cry. So, even though they started at the begining they did not really affect me til years down the line. Another symptom that is very knew to me is the pain I feel in my leg. Right before I am going to get a swelling attack I got this horrible pain in my lower leg. Like someone kicked my in the shin. I never had that prior to recently. So people dont always get all the symptoms at once. Im not saying you have CRPS, only a doctor can diagnose you with that but its a possibility. I pray you do not though. I am 26 years old, 23 when I got it, and I wouldnt wish this on my worst enemy. It really changes your life forever. I have it in my right foot. I lost my job when it happened because I worked in an office and I was on my feet all day and I couldnt physically do it anymore. I can only usually last 30 min at the most on my feet and that is if I am standing in one position with most of my weight beared on the "good" foot. Cant sit for to long either because that causes swelling attacks. Due to my swelling attacks, and the restriction of blood flow to the foot when they happen, I have lost bone mass in my right foot. Eventually I will no longer be able to bare any weight on that foot because it will be so brittle. I will be wheelchair bound. This is a terrible condition and I hope you have the pinched nerve others have posted about. My advice is to keep seeing doctors. I have seen 25-30 different doctors before finding my current doctor who is amazing! I have been treated for many different things over the past 4 years and as soon as I realize the treatment didnt work I moved on to another doctor. Actually, some doctors were so baffled they even told me not to come back and see them because they cannot help me! It was frustrating at times but I didnt give up. I kept going until I found my dr. He is a life saver. Im not cured but atleast he was able to treat me so I felt a little better. One last thing, if you do end up finding out you have CRPS do not let any doctor push you back into physical therapy. I think the physical therapy is what caused the spasms to occur more frequently. I let them push me to far and now stuck with these horrible spasms coming way more often. I know some people who do physical therapy feel better from it and im glad they found something that helps them but for some it may not. I wish I would of spoken up when I was doing it because maybe I wouldnt have these spasms coming so much now. Keep us posted on your condition! I hope you get better really soon!

Vanessa

Did you bring up the issue of RSD-CRPS to the docs at all?

Hey Jim,

Yes, and basically they concluded that it is CRPS without actually saying it if you know what i mean. They prefer to use the term 'pain syndrome' instead.

I am really confused at the moment as my dad is planning to return home to Malta and for me to follow the medication program given by the doctors. At the moment my condition keeps worsening and I feel as though just taking medication at home will not revers this????

My idea is to go to a specialist in CRPS in Germany and be guided further however my father feels that this is not necessary....really mixed up as to what the correct thing is to do at this point in time:confused::confused:

nigel, I'm not sure if you've mentioned this earlier in your posts but has any doctor performed nerve blocks at all, and if so what kind-procedure?

I have mentioned it to them but the specialist replied that you cannot do a symoethic block as it would block the nerve from functioning, therefore not sweat etc after...really mixed up at the moment and in need of direction...someone please help on advice on what are my best options on treatment:(:confused:

Dear Nigel -

Sorry for getting in late here, but searching PubMed http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed for "CRPS Hanover," I found a practice group in the Department of Rehabilitation Medicine, Hanover Medical School, Hanover, Germany, that's published two articles in the last three years that seem to be largely on point for your concerns. There is a charge for downloading the articles. but the abstracts with one of the authors contact information are freely available:

Influence of the temporomandibular joint on range of motion of the hip joint in patients with complex regional pain syndrome, Fischer MJ, Riedlinger K, Gutenbrunner C, Bernateck M, J Manipulative Physiol Ther. 2009 Jun;32(5):364-71.

Department of Rehabilitation Medicine, Hanover Medical School, Hanover, Germany. fischer.michael@mh-hannover.de

Abstract
OBJECTIVE: This study evaluated if patients with complex regional pain syndrome (CRPS) would have an increase in range of motion (ROM) after myofascial release and a similar ROM decrease after jaw clenching, whereas in healthy subjects these effects would be minimal or nonexistent.

METHODS: Documentation of patients with CRPS (n = 20) was established using the research diagnostic criteria for CRPS, questionnaires, average pain intensity for the past 4 weeks, and the temporomandibular index (TMI). Healthy subjects (n = 20, controls) also underwent the same testing. Hip ROM (alpha angle) was measured at 3 time points as follows: baseline (t1), after myofascial release of the temporomandibular joint (t2), and after jaw clenching for 90 seconds (t3). Comparison of the CRPS and control groups was made using t tests.

RESULTS: Mean TMI total score and mean pain reported for the last 4 weeks were significantly different between the 2 groups (P < .0005). Hip ROM at t1 was always slightly higher compared to t3, but t2 was always lower in value compared to t1 or t3 for both groups. The differences of all hip ROM values between the groups were significant (P < .0005). Moreover, the difference between t1 or t3 and t2 was significantly different within the CRPS group (t1 = 48.7 degrees ; t2 = 35.8 degrees ; P < .0005).

CONCLUSIONS: The results suggest that temporomandibular joint dysfunction plays an important role in the restriction of hip motion experienced by patients with CRPS, which indicated a connectedness between these 2 regions of the body.

PMID: 19539119 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19539119

AND

Do occlusal splints have an effect on complex regional pain syndrome? A randomized, controlled proof-of-concept trial, Fischer MJ, Reiners A, Kohnen R, Bernateck M, Gutenbrunner C, Fink M, Svensson P, Clin J Pain 2008 Nov-Dec;24(9):776-83.

Department of Physical and Rehabilitation Medicine, Pain Clinic, Hanover Medical School, Hanover, Germany. fischer.michael@mh-hannover.de

Abstract
OBJECTIVES: Studies have suggested overlaps between various chronic pain conditions and painful temporomandibular disorders (TMDs). The objective of this pilot study was to assess the effectiveness of occlusal splint (OS) therapy on self-reported measures of pain in patients with chronic complex regional pain syndrome (CRPS) as compared with a nontreatment group.

METHODS: The design was a prospective randomized controlled clinical trial. Twenty patients with CRPS were randomly assigned to either the OS or control group. The patients in the OS group were asked to use the OS at nighttime and for 3 hours during daytime for a total of 7 weeks; the control group had no stomatognathic intervention. The primary outcome was self-reported assessment of CRPS-related pain on numerical rating scales. Secondary outcome measures were the Temporomandibular Index (TMI), and the Short Form 36 Health Survey (SF-36).

RESULTS: All patients had TMD signs and symptoms, but OS had no effect on CRPS-related pain on the numerical rating scale (P>0.100). The changes in the TMI scores over time were 16.6%+/-24.6% (improvement) in the OS group and -21.3%+/-25.9% (impairment) in the control group that was significant (P=0.004). There were no differences in the changes of SF-36 scores between groups (P=0.636).

DISCUSSION: The use of OS for 7 weeks has no impact on CRPS-related pain but improved signs and symptoms of TMD pain. Future studies should include an active control group and evaluate if long-term changes in measures of oral health impact general health in CRPS-related pain.

PMID: 18936595 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/18936595

Note: in reading the the names of the authors, the principal researcher is general listed first, while the name of the most senior participating scientist (if s/he is not the principal researcher) appears as the last name in the right.

I hope this is helpful. I suspect you can easily find their departmental homepage on the Net.

Mike

Thanks for the info Mike!

Today I had another meeting with my neuro doctor. He concluded that I do have a 'pain syndrome' and calling it CRPS or RSD is the same thing apparently...

He explained that i am not a bad case as i dont have any real damage such as a fracture or nerve damage and recovery will be easier. He has now put me on the following medication:

Lyrica - 150mg x 2 (I have been on it for already 2 weeks now with not much affect)

Amytriptaline - 150mg Night (Just started them two days ago which help me sleep much better)

Muscle Relaxant - 50mg x 3 Daily (Just started today)

He also wants me to start psychological support together with very very light pool PT and massage.

He is also confident that I will be able to get better with the medication, psychological support and slow PT in around 2 - 3 months. Furthermore, he said that time is not an issue for me although I have been 6 months suffering in pain together with increasing symptoms and pain travelling to my arm and other knee.

Although my doctor is not so 'worried' about my case, i still know what RSD entails being a good or bad case. At the end f the day, I still stuck on the chair 90% of the day and hardly able to move:(

What are your suggestions / opinions on the medication? Is it really possible for it to 'reverse' my RSD and can I have a clean conscious and go back home know that im 'safe' as the medication will only get me better?

I know its difficult for an answer but any advice on the about will really help me that what im doing is the safe thing or if I should look into other treatment at this stage...

Thanks,

Nigel

Hi Nigel!!!!

I really hope you will heal completely soon. Something that I strongly recommend is your having Vitamin C infusions. A year ago I slightly injured my ankle, which caused my foot RSD that I had for years to spread to my ankle. At first nothing worked and it seemed sure that I would forever have ankle RSD. It was awful!!!!

Thank goodness, a doctor put me on weekly Vitamin C infusions which healed my ankle almost fully!!! Now, a year later, I don't have but the mildest of RSD, almost as how it was before my foot injury.

There have been studies proving the importance of vitamin C in the prevention of RSD. This is the link to one of them. Or you can just go to Google Scholar and type CRPS or RSD and Vitamin C. My RSD specialist also told me it is a proven fact.

http://www.cabdirect.org/abstracts/20003017023.html

http://ebm.bmj.com/content/13/2/48.extract

The vitamin c infusions are through IV and are in my experience completely safe and extremely helpful. Definitely try them. They do them in Cambridge Massachussets and Welleslley Massachussets at both Marino Centers. Dr. Gordin is wonderful. Maybe where you live you can also find someone who does the infusions.

Best of lucks!!! I send you all my support and wishes for a speedy recovery. You will make it!

I forgot to say that the IV's of vitamin c i got are 50 grams each. A potent dose that cannot be taken by month. That's why it works so great :) I had them weekly for a month or two and that was enough so it is not necessarily forever.

Nigel....

I am 21 as well and have had RSD for over 3 years.... I cant type much as my hands are really painful right now... but get the best help you can and you can get GREAT advice on here... most of the time better than any research or any doctor you will see because most doctors will just dismiss it. Hang in there know you arent alone... one thing i learned.. is do one thing you love everyday. Weather it is watching your favorite sport, tv show, reading a book, cooking, throwing a football across the room, anything to just bring joy to your life at one point during the day. That one bit of advice brought me a long way. :)

Dear Nigel -

I have no problem with what your doctor has prescribed for you, although I would have liked to have seen a "third-generation" IV biphosphonate in there - so long as you don't need any major dental work and your liver is in good shape - but take issue in general that time is not a concern for the patient. And even though you are - at three years - no longer in the acute stage, there issue of potentially ongoing neuro-cognitive changes, that makes the maintenance of the status quo, albeit in greater comfort, less than an optimal solution. If you search the forum for "brain fog" you'll find a large number of anecdotal reports of increasing awareness of cognitive impairment over time: particularly in terms of staying focused/organized ["executive functioning"] and memory issues. (Please note, however, that in Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M. Pain 2009 Dec 15;147(1-3):107-15, Epub 2009 Sep 23, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Pain2009.pdf although the authors find that a large number of peoples' pain had gone into long-term remission, there was still no significant improvement in terms of "quality of life" issues. And unfortunately, Appendix II to the article, in which the "quality of life" scale is broken down, is not readily accessible.)

And please see the rather lengthy post I just put up in one of your other threads, RSD Specialists/clinics Germany http://neurotalk.psychcentral.com/thread149765.html

Mike


PS Signing out here in LA with one last thought: if possible, try to avoid having too many of your own threads going on a common question: it makes it hard to keep up. :D

Managed to get an appointment with Dr. Rohr! I am currently in Saabrucken waiting for my appointment on Wednesday.

Any advice as to what I should ask him besides the obvious stuff??

Also, does RSD affect breathing, blood pressure, hear rate, digestion, saliva, adrenaline rushes etc etc? As time goes by im notice more and more wired things..just wanted to know if im fussing or if its the RSD.

Thanks,

Nigel

Nigel -

Sorry for the delay in getting back to you; hopefully you'll have a chance to read this before your appointment.

The key thing to be asking about are the availability of "non-palliative" treatments, along the lines of those which I outlined in my post #17 in your thread RSD Specialists/clinics Germany at http://neurotalk.psychcentral.com/thread149765-2.html

And specifically, where some of those treatments may be more or less effective, depending on the state of the disease that you are in, it's my experience that the clock and calendar are relatively imprecise measurements of where we may be at any point in time. Accordingly, if price is no object, I would urge you to explore having a cytokine panel drawn: the same tests a departmental chair at the Mayo Clinic referred me to Johns Hopkins for in 2006, only to find - at that time - that while cytokine testing was taking place throughout Johns Hopkins' research labs, it was not clinically available.

Here's hoping you have better luck than I did.

Mike

Just got back from my appointment with DR. Rohr. Didn't manage to read your post before mike.

He suggested that my best hope of remission in my case would be to do the 5 day in patient ketamine treatment. He gave me 2 weeks to go back home and relax and think about it.

At the moment my parents including myself are very anxious and unsure about this treatment...will it work? is it risky? is it addictive? does it really cure rsd? etc etc...my parents dont want to rush me into it however dr rohr said that time is very important in this condition and treatment is very difficult after 1 year.

At the moment in my condition I am ready to do it if there is a good chance I will come out pain free..we just need to weigh up the pros and cons..

Would appreciate anyones comments who have been through the procedure and what it really entails and how they felt after...pain free? how long? etc etc...

Thanks,

Nigel

Dear Nigel -

Please see my PM to you, and forgive me as I borrow from parts of it it here.

While I have yet to have ketamine treatments due to glaucoma, you should be aware that following Dr. Schwartzman's lead, the 10-day outpatient ketamine infusion (200 mg/4 hr. infusion) has been widely adopted in the U.S., where Schwartzman et al showed, using at that time only 100 mg./4 hr. infusion, results that were significantly better than those obtained with the 5-day 'low dose" infusion, even at 40 - 50 mg./hr., especially in people who had RSD for more than a year. Compare, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients, Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008;9(1):44-54, paying particular attention to the "Discussion" portion of the article beginning at p. 50, FULL ONLINE TEXT @ http://www.rsdsa.org/pdfsall/Kiefer_Rohr_Ploppa.pdf, with, Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 Dec 15;147(1-3):107-15, FULL ONLINE TEXT @ http://www.rsdsa.org/pdfsall/Schwartzman_Pain2009.pdf

And for a very recent article by Dr. Schwartzman et al, including both a discussion of the possible side effects of ketamine therapy and a detailed description, in the appendix, of the current out-patient protocol, see, The use of ketamine in complex regional pain syndrome: possible mechanisms, Schwartzman RJ, Alexander GM, Grothusen JR, Expert Rev. Neurother. 2011, 11;719-734 FULL ONLINE TEXT @ http://www.rsdsa.org/2/library/artic...rtrev.2011.pdf

So an important - but not necessarily determinative - question may be whether Dr. Rohr is able to offer the outpatient protocol, where it appears to offer the best chances for people who have had the disease for more than a year.

Mike


ps And thanks to the RSDSA for making full text copies of these and so many articles readily available! http://www.rsdsa.org/researchlibrary.html

pps Please check out Daniella's current thread, Those who have had ketamine? at http://neurotalk.psychcentral.com/thread150232.html

ps to last
 

Nigel -

Before I appear resolved to prejudice you in favor of a hypothetical 10-day outpatient program, did Dr. Rohr tell you what the hourly target rate of ketamine infusion would be in his 5-day infusion program?

Mike


ps Just noticed in the Ketamine Coma Treatment thread a reference to Dr. Rohr doing an 18-day infusion. See, Post No. 5 at http://neurotalk.psychcentral.com/thread150454.html So apologies about jumping to conclusions re the length of the infusion.