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

Hi my Fellow Friends at Neurotalk,

I have been a visitor to this site for the past few months and so far have just read stories about others struggle to maintain lives with RSD. While I've made a few posts I have not commented much...feeling too new to do anything but get to know the site. Now I feel confident in sharing my story.

In August of 2005 I woke up to pain in my feet. Pain that had no reason to be there. Realizing the pain wasn't going away I began popping ibuprofen to try to reduce it. Not only didn't it go away it got worse! Great! I had to go back to school the next week to prepare for the new year as an 8th gr. Algebra teacher and wondered why this cropped up now when it had the whole summer to come and go. Yikes! By the time I left the cabin to prepare for the new year I could hardly walk for the pain in my feet. I couldn't even hop!

So I started the new year in pain that only increased with each day. I saw my general physician who thought I should see a foot doc. So off to the podiatrist I went. By this time it was almost time for the school year to begin and I was getting desperate. The podiatrist thought I had tarsel tunnel syndrome of the feet/ankles and I would need to have surgery to relieve the pain. Well, having never been a fan of surgery I asked my general physician for a second opinion at Mayo Clinic in Roch, MN.

I spent the next four months going from one specialist to another. Test after test, going from crutches at the beginning of school to a wheelchair by the beginning of November. Nothing made sense and I was going out of my mind with the raw, ragged, stabbing, bed of nails pain that I now had all of the time. I refused any medication until these special doctors at the Mayo Clinic could find a diagnosis. Needing my job and insurance I had to continue to work. it wasn't until I saw one doctor who suggested I focused on getting better and signed a note that said I would be unable to return to work for a few weeks. That was Dec 23, 2011. At the time I didn't know it, but I would not return to work that school year or for the next six either.

After that I finally was able to see the neurologist and the foot and ankle specialist (they were so booked that there was no way I could get in before that time). The neurologist said, "It is not neurologically based" and that I should begin walking again w/o the wheelchair. Ohhh, every footstep was agony. Finally I got in to see that foot and ankle specialist. I rejected the idea to just put a shot into my feet to make them feel better and challenged the doctor to look closer. He thought a few moments and then ordered the test that has changed my life. He ordered a nuclear bone scan of my feet. After the scan I met with the doctor. He came in, showed me the scan results on the computer, and while tracking a point on my foot he explained about the reasons why my foot looked like cottage cheese. Then all at once that point disappeared. The point was not a hole in my bone but a nerve misfiring. The doctor turned to me and said that I had Reflex Sympathetic Dystrophy. His fellow explained the disease to me and said I would be forwarded to the pain specialist for help with this very misunderstood disease. One that is not curable but only managed. My heart fell 10 stories. After that it was years of pain blocks, physical therapy, pain medications, pain clinics, pool therapy and a bunch of tests which included several EMG's. The pain began to migrate. First from the foot to the ankle. Then from the ankle to the knee, and then up to my hips and lastly to my arm/neck and hands.

This June (2011) I found myself confined to my recliner at our lake cabin with my feet up as high as I could get them, my knee up on a pillow and each of my hands on pillows as well. After considering the pain that spiked so high I couldn't rate it I finally came to the conclusion it was time to follow-up with the doctor about a spinal cord stimulator. From there I had the trial implant on June 20. It went so wonderful I cried for an entire day--tears of joy.

Today, almost exactly 6 years to the date I had a Boston Scientific Precision spinal cord stimulator placed into my spine with the battery inserted in my right butt cheek. I'm sitting in my recliner now without pain in my lower half of my body for the first time since that fatal August day. For the next 6 months I will continue to take the Lyrica, Cymbalta, Trazadone, Celebrex and Rinitadine and then at that time I will try to tapper off my medications as much as the pain will allow.

The spinal cord stimulator trial and surgery were not as painful as I thought. However, I realized the trauma it inflicted on my back after the trial was taken out to be considerable. The doctor recommended a minimum of 3 weeks before implanting the final stim. Boy, did he get that right! The two incisions on my back are about 3-1/2 to 4 inches long each--one on the lower part of my spine and the other down about 2 inches and to the right about 4 inches. They should heal like a fine line. No showering for 4 days (Yikes) and no submersing for 4 to 6 weeks.

So, there it is. My story. It only took up 8 inches of typing but a lifetime's worth of agonizing pain. Now I'm onto part 2 of my story; one which has yet to be played out. Thank you for reading about me. Let me know if I can help in any way. ~Teresa Marie

Teresa Marie- It is so good that you shared your story here, taking us on the adventure hoping for part II to be a revelation of the benefit your implant has given as it addresses your pain from RSD. Your open heart and willingness to share is both testimony and inspiration to others who hurt.

May all be well, may all go well with your Boston Sci implant,
Mark56z

I want to say I am glad I found this site I am hoping I will meet some people that understand what this monster has done to all of us , and will support me and let me support them.
I am 43 years old I have full body RSD I was a nurse for over 25 years, a wheel chair lift on a van came done on my foot ( the weight of the van and lift was on my right foot) I was in a parking lot and they were redoing their parking lot thank goodness. It took 5 big guys to lift the van off my foot so they could pull me out. I was sent to Indy to a big hospital and was seen by a specialist who decided that immobilizing my right leg for 6 months was the right thing to do and to give me large doses of medication to keep me out of pain. They said I would never walk again, I was in a chair for 2 years. I worked hard and got to where I could walk again I went through many Drs. and treatments. spinal blocks and spinal cord stimulator large doses of pain medications, therapy. I am no longer able to work, I dont sleep and the pain you cant describe, I fell and my stimulator has to be taken out and replaced but I also have a bad heart so they are having problems. I cant find a dr that understands and knows what they are doing that can really help me....

Default living with RSD
Hi everyone,

I was told by 2 doctors that i have RSD. Last December i had a slip and fall accident on the ice and i broke the tib/fib in 3 places. They had to put 2 bolts, 11 pins and a plate in to hold my ankle and leg together. Since then i've been in terrible pain, Swelling and discoloration to my foot and lower leg and very senesitive to touch along with being cold all the time.

I've been too so many doctors and they all tell me they can't help me and i don't know where to turn i was told that this spreads very fast and i can tell a difference in it everyday. i hardly have any range of motion in my foot because i've tried for almost a year to get a doctor to treat me and no luck.

I live in upper michigan (harrison, Mi) and at this point i cant take it my family doctor has no idea what to do but make me wait for different doctors that all tell me the same thing (i cant help you)..

Does anyone know of any doctors that caan help that are in michigan or anywhere for that matter....

Thank You Betty

Hi Nnklynn,
I'm not in Mi but I read your post and wahted to welcome you to the family. I know how living with this monster sucks and being up north like you are doesn't help because cold weather makes things much worse. I hope you find the help and relief you need...

I'm to the point now where i'm getting very discourged. every doctor i have seen tells me the same thing (i cant help you) i have no pain control my family doctor has no idea how to treat me and as the weather gets colder. the pain gets worse to the point i bairly get any sleep. i'm in severe pain 24/7 either they cant help me or they wont take my health plan which is a community health plan......can anyone help me

Betty

i am young and was in 3rd grade when i was found out about my rsd it was scary but went away thanks to dr. sheri

Hi

I'm 16 and have been recently diagnosed with CRPS in my whole body. It took me 5 years to be diagnosed. In that time the pain has just got worse and the problem has spread. I have really tried to explain the problem to both friends and family and no-one understands. I was just wondering whether other people found that both the doctors thought that you were lying or that your family and friends just didn't "get it".

Thanks

Apple16

Very sorry that you are going through this Apple...and at such a young age. I have had my fair share of doctors and people at work (and a lawyer) who treat me like I am exaggerating or lying about how much pain I am in. Bottom line...those are not good doctors in my opinion and you just have to keep looking until you find the right one (which I hope you have now that you have a diagnosis). And the other people...well...they just don't matter to me is what it has come down to.

I've been pretty lucky that my family and friends have never made me feel the way those others have and they have been 100% supportive throughout. BUT...I would say that despite how compassionate and supportive they are...they really don't "get" how bad the pain is and exactly what I stuggle with each and every day. How hard it is to make myself get up in the morning and to do the things that I need to do...to keep fighting. But I don't think it's their fault because I don't know that anyone who hasn't been through this and HAS RSD can REALLY fully understand what it is like (and I wouldn't wish it on my worst enemy let alone family and friends). Since family and friends are supportive, what I try to do in frustrating situations where I feel they are just not "getting" it, is educate them. They are always willing to listen and to try to understand. Not only is it good to help them understand but I personally find it sort of therapudic too.

Now that you have the diagnosis are they working on an aggressive treatment plan? Do you have any questions? This is a really wonderful site and I am glad that you found us because I know how helpful everyone has been on here for me. Take care...I hope they are able to do something for you.