Chronic and Severe Bilateral (lateral) lower leg pain

Dear Reader,

About 3-4 years ago I developed ITB on both legs due to overtraining (cycling). It was the beginning of the season and I simply did too much in a short time. Mainly making too many height meters too early in the season. The ITB issue was very persistent. After about 6 months, this was 2014, I got a cortisone injection on my left side. Around the tender spot which is used to diagnose ITB (Ober test?). Around that time I had some mild inflammation on the back of my knees where the muscles from the upper legs attached and I had some mild inflammation on the spot where the IT Band attaches to the lower leg (around the Fibula head) Right and left lower leg had the same problems. My knees were overused as well, all small irritations and pains. Nothing swollen or screaming pain.

After a lot of rest and a lot of foamrolling and core training the IT Band issue went away but what stayed was a burning, irritated feeling around the fibula head. Sometimes a bit more radiating towards the ankle, but never until the ankle (say 2-3 cm below Fibula head). I could never link this to biking. Under the guidance of an experienced physiotherapist I tried to provoke it several times but was unable to link this irritating burning " pain" to any activity I did. This was already in 2015. In that year I did some more bike fitting, experimenting with insoles, manual therapist, more physio and all that. X rays were made (Knees, leg) all ok.

End of 2015 this burning irritating pain got worse and manifested itself as stiffening knees while sitting (and all tissue around it). At 12:00 at work I felt like a 80 year old. Knees started to knack when walking. After 30 minutes of walking the stiffness went away again and came back while sitting. This continued and worsened during the year. End of 2015 I was hardly able to drive to my work or to sit very long behind my desk. The mild burning was sometimes very deep aching pain around the fibula head and below that spot, which was aggravated by sitting (while driving the car or sitting behind a desk, less so in bath or in a car not driving the car myself). I already noticed at that time that the pain was less when I for example put my legs on the dashboard of the car. The pain was however never gone and was starting to interfere heavily with my life. It drains energy from you when being in constant pain.

I was still biking during that time, but not more than 4-8 hours per week with a heartbeat of approx 135-140 on average. Nothing crazy. I was using the foamroller for the IT band and went to a massage therapist for regular massage. Also stretched a lot.

Beginning of 2016 I took a sabbatical from work to finish my psychology master degree. 7 months of no work that started with a trip to Italy to watch the GIRO. At that time I still had some OK days, with most days of having stiff lateral lower legs, burning around fibula head until the ankle on some days (both legs). So pain levels between a 3 and a 7 I would say. Intefering with my life but still managing to keep things going.

I went to the hospital (sport doc) several times but other than an X Ray from my knees and Legs, nothing was done until Mai/June that year.

In Italy I went biking for 2 " days" , 1x 3 hours, 3000 height meters, 1 day just 1.5 hours which was a hill time trail. After the first day I started to notice deep burning of the lateral side of my legs (both), like somebody ironing my lateral legs. During the day it was mostly gone. Day 2 I had severe cramps in my calfs on top of this hill (11% avarage, 1,5 hours, very steep climb)

When driving home some days later I had a terrible back ache on the left side and my lateral legs were screaming in the night. Really sharp deep burning pain in the Tibialis Anterior muscle. There were also a lot of fasciculations going on in the lower legs. Usually I don't have this so often but I took it for granted. It was a steep climb, warm day so thought it was normal. Although I noticed it because of the severity of the fasciculations.

Back home end of Mai 2015 I made a salto and landed incorrectly with overstretched feet on the ground. I cannot specifically say that this is the root cause of all the problems today, but it certainly set of something that was already there. I could not stand on my legs anymore some days later. The center pain was located around 4-5 CM above my ankles, right more than left and it could not bear much weight. Standing was difficult and walking as well. Went to the doc several times and he said I would be ok. No tear so functionally everything ok. I stopped biking 100% from that point. I did not biked again after this.

That week I found myself back screaming my neighbors awake from the pain I had in my whole lateral outside part of my lower legs. Really unbearable pain for some nights. Also during the day it was very very painful. The nights I would rate at 10 and the days between 6-8. Like exploding legs. I had a lot of fasciculations going on but they were not painful at the time. A warm bath aggravated the pain. Whole 2016 was a struggle with a lot of pain. Went to the doctor 5-6 times, saw 4 different doctors (like the general practitioner) because of some burnouts and some people leaving that institution and they all send me home with first paracetamol, then diclofenac, then tramadol until I demanded action. 38 years not being able to walk more than 15 minutes, having between 6-10 level pain. So up to the hospital.

Neurologist told me, seeing me with clothes still on, that my back was ok. No MRI needed and he would order a EMG. I insisted, because of some serious back issues in the past and the back issue on my way home from italy, to have that MRI taken. He reported back to my general practitioner that I came to visit him for calve problems?? He forwarded me to the orthopedics with knee problems (??) and the orthopedist on visiting him was only willing to look at my knee because it that was in the message from the neurologist.

Upon the next appointment with the neurologist he told me that the EMG showed fasciculations on my calves (needle test) and that conduction in lying position was good. When I asked him about the back MRI he told me that no MRI was made because my back was ok. After telling him that I do had an MRI made he quickly looked up the result and told me that I indeed had a HNP L4-L5 but very small and this was the kind of HNP that 4/10 random people on the street would have. I did not have any back pain anymore while taking the MRI, nor any troubles with flexibility (hands flat on the ground while standing, straight legs test negative and no lockups or shooting pains, also no radiating pains)

Because I was troubled with the approach as outlined before I asked a second opinion in a specialized clinic and they confirmed that the HNP was nothing to worry about. They saw a small hernia as well one level lower on the right side. But no root compression or anything there. I thought just let it go, live with it and maybe it will pass by.

Some months later the pain became disabling (beginning 2017). Sitting on a chair was almost impossible. Pain never went away, even while standing. Feet and toes started to cramp, feet bridge, calves cramping, burning, aching just all in all just not manageable anymore. I started to work either standing or sitting on my knees in front of my laptop. Although standing was problematic at some points as well.

Not wanting to see yet another general practitioner knowing that I would get another box of tramadol I thought I would make a new MRI in a private clinic just to see if something was changed. Here they only comment on the MRI and not make a diagnosis. The comments were L4-L5 HNP left and one below on the right site (without root compression) Even on L4-L5 they note that there is enough space available for the root. I figured it would be easier going forward if the whole HNP was gone from the picture. That was the main reason to make that MRI again after some months.

So, having that much pain in two legs, having the new MRI I had another appointment with a surgeon and he told me that he could give me a epidural shot on the left side. During the first conversation we had he only noted that I had pain in my left leg for 6 months. At that initial appointment his phone rang just at the start of the clinical examination. He got a phone conversation about some value that was incorrectly filled out on a bloodwork form. He never started the clinical examination after the call but mysteriously he noted down the results of a clinical examination: straight legs test was positive, that he could provocate the pain while pushing on the vertebra and that my fingers could not touch the ground while standing. I was really astonished by this but I found out because I had to request the documents from him later that month. Not having any options I went for the epidural shot which is done by the pain team. They obviously looked at the results about the clinical examination because they got a bit angry when I started to question the use of an epidural shot. The person told me that epidural injections have no use after a long time so my reaction was that I had bilateral leg pain for more than 1 year. Her reaction was ok then we also inject you on the right side L4-L5.

As my whole environment wanted action I took the shot but was really not convinced about it. Having no structure in the clinical examinations, no plans of inclusion or exclusion of things to look at, it just did not feel like the right thing to do. I reached out to several other specialist. One would want to do a fasciotomy on my lower legs and the other confirmed that there was a possibility that it was my back.

Around April this year I found out about a PTED study in the Netherlands and I wrote the surgeon leading that study. I collected all information/letters/mri's, and sent it to him. Here I found out about the clinical examination results of an examination that never took place. I had an appointment with the doctor. He repeated the story of pain in left leg for 6 months, I tried to push back and managed to put the right side of the story and the + 1 year on a side track. It was parked as " we give you a block injection at the right side after the operation to see if that pain comes from your back. I went for it because PTED was less invasive and with less risk.

I should have been stronger at that point. I was outside in less than 5 minutes. After these 5 minutes I had a good clinical examination and the person doing it was VERY surprised. I could do sit ups, push ups, put my hands flat on the ground while standing, raise my legs like a gymnast and walk on toes and heels. With the strength test I almost kicked her against the wall. No feedback loop here. I filled out a questionnaire ( pre operation) and some weeks later I went for the operation.

It is very stupid but I somewhere knew that this operation would be unsuccessful. I felt pressure from my environment....because a HNP is something to point at as a cause and a professional tells you that the pain will be reduced by 90%. Even when neglecting the same problem, in a different leg, occurring at the same time. Even the EMG showed that there was no compressed root.

So now here I'm. Same pain, heavy fasciculations in both lower legs. Burning lateral sides of my leg (fibula till ankle), with still more painful area 3-5 CM above my ankles and not able to sit. It feels like somebody is pumping air in my legs when I'm going to sit. Almost immediate increase pain while sitting and lying down. Walking and standing is less painful. I have also some small wounds on my lateral side of my legs that do not seem to heal. They are there for about a year now. Just some deep red purple spots. Maybe because I touch it too often. I don't know.

Back operation is just 6 weeks ago and I was in the hospital for 9 days. I was on morphine for about 8 days because I lost a lot of blood during the operation. After the operation they helped me to the toilet which started the internal bleeding again which resulted in some very painful hematomes which also, according to the hospital, increased pressure on the nerves. This period is a grey period because I can only wait and see before I start to look further again.

The main problem of this whole process so far is that there is no structure and no plan. Professionals seem to be overbooked, often stressed out and mainly working on their island of expertise. Having a general practitioner who herself had some burnouts resulted in a patched process in which I saw 4 or 5 different practitioners in just 8 months. Often the story written down in the 5 minutes that you see somebody only includes the part that fits the expertise of the person sitting in front of you. I'm very consistent in my story, but two legs become 1 leg, multiple years become 6 months, burning bilateral lateral leg pains becomes calve problems and so on.

My goal is to start the diagnosis up again in a private clinic with 1 doctor in a more structured way. I have to go back to the hospital and I certainly know what the proposal there will be. Either burn away nerves or get me back on Lyrica. I could live with if the whole process to this point was more structured and less patchy. The avarage time with a docter was 5 minutes. Too many errors made to let my nerves be burned away at this point.

The reason for posting this story is because everybody has their own expertise here and all information is welcome to push me in the good direction. So all feedback is welcome. The above is also no critique to the profesionals in the field. I do notice however that people are under gigantic pressure and because of that operating in heuristic mode. I'm just not the guy that pressure people once I notive they are under pressure. Please PM me as well if you do private consulting of some sort.

One more note...I have a 2nd degree AV block (few complete blocks but not sure how often, on two 24 registrations seen just once or twice). In the night I have a heart beat around 30. Mobitz I and II, all bloodwork = perfect, no smoker, no drinker, perfect blood pressure, no sugar.

For the rest I'm doing great ;-)

deep burning of the lateral side of my legs - burning pain point to nerve damage pain and on the lateral just below knee would be peroneal
Upper fibula is where the common peroneal nerve often is entrapped or irritated; with major involvement would have shin weakness, atrophy and foot drop, and knee pain. Often there is a cyst along the peroneal nerve but this is sometime missed.

pain 4-5 cm above the ankle is the superficial peroneal nerve.
It can be released by surgery:
http://bjj.boneandjoint.org.uk/conte...1/131.full.pdf

Though one case had recently been treated with pulsed radiofrequency denaturation:

I saw a case presented last year treated with perineural injections

as per:
Thor, Ju Ann, et al. "Perineural Injection Therapy in the Management of Complex Regional Pain Syndrome: A Sweet Solution to Pain." Pain Medicine (2017): pnx063.

Thanks for your reaction. I did have a new MRI made which includes the fibula head. Waiting for the results. On the MRI image itself (received this before the analysis), some wierd spots are seens on the other side of the tibia (inner part). I had an operation 25 years ago so I hope these black spots (white on some other images) are from the scar on my leg. Looks a bit weird.

Furthermore I get a compartiment pressure test in some weeks and a functional MRI to test blood supply. Although the heavy pain started in relation to biking, having had enormous pains last year and pain when pressing on the muscles in the lateral compartiment with a finger, I am much in doubt if this could be compartment syndrome. I have pain when lying down, is relieved a bit by walking (short distances) and is aggravated by sitting. Also the fasculations I have and cramping also occurs in the calves, not only in the lateral compartment. (although the lateral compartment being the center point of the heavy pain). Compression socks seem to help a bit, changes the pain intensity a bit.

I did not made any workouts or exercises during the last year other than walking with a slow speed. So not sure about the exertional part in exertional compartiment syndrome. According to some docs I spoke about this it's not always that black and white.

Went back to doc to exchange oxycodon for tramadol as I do not want to use oxycodon. But indicate the (peak) pain levels :(

Does anybody on here knows a lower leg specialist who can have a good look at my lower leg MRI?