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) 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

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

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!

Hi and Welcome Nigel,

I have a similar situation in that after 7MDs I was dx, and it was under the 6th month mark. Unfortunately, my pain was not reversed. I would recommend pain management with someone who specializes in the disorder, and get a prescription for physical therapy. You do not want that knee or foot to be idle.
Good Luck,
Lucky853

I like to golf with my husband, one day I can do it and put up with the pain after words and sometimes I think I can do and find out while trying to that I can't! Sometimes I feel it worth the pain because you need some enjoyment in life!