Excruciating leg pain for five years -doctors seem baffled

[OntarioBagnet]

I’m at my wits end i really am and am beginning to think I’d be better off having my leg amputated.

So five years ago, I was fit, bit of a gym bunny, running 5-10k a couple of times a week and doing classes. Started to get a weird pain in one calf, just in one spot, like pressure in the calf. I was commuting by train at the time and put it down to sitting funny on the train as always had my rucksack between my feet.

Anyway then a bit later my ankle started hurting and I saw a physio who diagnosed a peroneal tendon problem. Everyone has always been more fixed on my ankle and less bothered about the calf, I guess because by now the ankle pain was the major problem. I was struggling to walk. I kept mentioning my calf and people just said that the tendon fixes into the calf muscle so will make it ache.

by now I was seeing an orthopedic consultant (this was after loads of physio, private steroid injections and a podiatrist). The ortho consultant found a couple of issues on mri, a big cyst inside my fibula and a torn peroneal (longitudinal) tendon. So had surgery and had the cyst removed and the tendon repaired.

more physio and ankle still hurts, calf still hurts. Loads more steroid injections, into the joint, into the tendon sheath, into another part of the joint, back into the tendon sheath. More mri, Ct scan, loads of ultrasounds and X-rays. Every thing they suggest it’s months and months before the next step so it just drags it all out.

latest ct and mri show tendon is still torn and I have two torn ankle ligaments. So another steroid injection. Hasn’t worked, they say I can have another. I refuse. So now am waiting to go back and see them again but they’ve muttered about more ultrasound scans! 😡🤷‍♀️

but the one thing which is causing me excruciating pain is my calf. Something which they have never found anything wrong with it. It feels like it’s having contractions/waves of pressure building up from the inside. Feels like it might explode at times. And this can be when I’m sat still. When I’m in bed at night. It does seem worse on exercise (I cycle), as I start cycling I can feel the pressure building up in my calf. But even on days when I haven’t done anything it can come out of nowhere and I have hours of stop/start waves of pressure and pain. I’ve told my physio and she seemed not sure, said it almost sounded like chronic compartment syndrome. It does feel like there’s an issue with blood flow, but surely I can’t have had it for five years?

has anyone ever had anything similar?

Oh and they said this in the last mri. “A small recess of joint capsule is seen in the anterolateral ankle gutter.” which I’m going to ask about. My physio is suggesting trying laser therapy next or possibly shockwave.

How much exercise, and what kind of exercise, do you routinely do each week?

is it only one leg, never the other?

Only ever one leg (same one). I do Pilates twice a week, spin twice a week, cycle at a weekend when the weather is nice. I’ve had periods where I haven’t exercised at all (in a leg brace for six weeks and a plaster cast for a bit) and it was no better. Still got the calf pain (and ankle pain, though ankle might have been a bit better when resting).

I’ve completely stopped running and doing classes like body pump, haven’t done anything like that for over 4 years. I don’t do anything like squats or lunges as I feel my ankle mobility is restricted.

I have exercises from my physio which I do quite a bit, ankle eversions, wobble board, calf lifts, etc.

Am currently sat on the sofa and it’s like being in childbirth in my leg! I’m close to screaming with the waves of pain.

Compartment Syndrome?

Have a look at something called compartment syndrome. It may not be relevant but it is the first thing that came to mind.

Or Complex Regional Pain disorder?

Have a look at complex regional pain syndrome. It often occurs after trauma/surgery. I am in healthcare and have only seen it once. It causes changes in the skin of the affected area and if it is a limb, it is often bigger/smaller than the other limb

Cross posted

I would suggest it could be a trigger point and muscular spasms and myofascial. Also know as tight muscular knots which don’t show up on mris etc. it could be this from what you describe.

Could it be something to do with menopause:peri? I get pains in my joints and muscles 😢

Have you seen a physio recently? A really experienced sports one.

I’m not sure it’s complex regional pain syndrome, I’ve read about this but there’s no funny skin colouring or texture, no swelling.

I do wonder about chronic compartment syndrome but everything I’ve read says it goes away when you stop exercising and mine hasn’t. 🤷‍♀️

@Jafffffacakes what could be done about that? Massage, laser therapy? I do lots of foam rolling and calf stretching.

I don’t think so as it’s only one leg, I feel fine everywhere else.

One other thing, I’ve started getting pins and needles and numbness on the bottom of my foot. Not all the time, it’s worse when my calf pain is worse.

Was the imaging done only on the lower leg or did they scan whole body? Just because I had really bad leg pain but it was eventually discovered that the cause was actually in my back and the pain was referring downwards and/or coming from my legs over-compensating for back issues. That was both legs though so maybe not when its only one leg.

I’ve had a couple of months off from the physio as didn’t feel anything was helping, she’s a very experienced sports physio. She’s done acupuncture and cupping near the tendon. Given me loads of exercises. Again I think she’s probably focused on the ankle. I’m still in email contact with her as she translated my last mri report and has suggested laser therapy which I’m going to book for.

The feeling of pressure you describe reminds me of when I had compartment syndrome. Although that affected my shins.

Only done the affected lower leg.

I’m even starting to freak out wondering if I have MS, not sure if that can affect just one area but the calf muscle feels so stiff.

Thank you, did yours go away by itself or need surgery?

It might be worth seeing someone else. I went recently with horrific knee pain and within minutes it was clear that it was actually an issue with my hip.

I needed surgery on both legs. It took a long time to settle down after the surgery. But I am symptom free now. Although, it did put me off running.

Thank you, what sort of doctor was it? I’m unsure if orthopedics is the right specialism or do I need to be referred to someone else?

It was an orthopedic surgeon who fixed me. But a GP who happened to be a keen runner spotted what it was and gave me an urgent referral to the surgeon.