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?

I had horrific leg pain and it turned out to be sciatica (spine hernia). Doesn’t sound particularly like what you have, sciatica pain is more like a fire inside the muscle, but if you haven’t had a MRI of your lower spine it might be worth paying for one privately (approx £400).

have you seen a pain consultant at any point? Might be worth exploring if you haven’t. Unfortunately not everything in medicine is black and white and sometimes it just isn’t possible to fix the problem, but pain consultants are really good at helping with different management strategies for complicated pain. Worth a thought…

Massage can help as can release techniques. The pins and needles also could be linked to what another poster said that the pain is somewhere else (maybe further up) and it’s referring down to that spot. Referred pain pathways should be known by your Physio. I could be barking up the wrong tree but it sounds similar to what I had.

Spinal issues apparently can cause both upward pain (headaches, occipital headaches, neck aches , pins and needles in fingers and pain in shoulders, as well as downward pain, legs and feet and pins and needles. I've had the pins and needles thing in soles of feet, weird buzzing round calves, buzzing in fingers- apart from high blood pressure, high cholesterol my bloods were fine, neurologist says doesn't present as MS , Parkinsons etc - suggested though I saw osteopath as my posture is lousy, and I've got very frequent back of head/neck pain osteopath fairly sure it's . spinal degeneration as symptoms match. now waiting on a mri . Did your MRI cover your neck and spine??

I have problems with one of the discs in my back which manifests itself as numbness in my foot (it's a nerve thing apparently). I would look into investigating your spine health.

Thanks everyone, I’ll definitely explore possible back issues and ask about a referral for the pain team.

OP, interested to know if you resolved this issue?

I'd get your liver checked out - I had a friend who had severe leg pains and it was linked to drinking.

Sort of. I’ve been diagnosed with Ehlers Danlos Syndrome which is a connective tissue disorder. So they think that’s causing the tendon problems in my ankle and ankle pain/lower leg pain. I’ve been having lower back issues and went to see an osteopath who said straight away that I was hypermobile and had EDS. Dd also has EDS. Sadly it means no treatment and no cure really…..just trying to manage symptoms as much as possible and put up with the pain. I’m weight lifting now though to try and get the muscles to be stronger all over which can help.

I’m tea total but thanks.

Polymyalgia? MIL has this. Had leg pain for years that caused her to limp.

I just saw your post and wondered if you had come across the Zebra Club? It’s a great resource for people with EDS and Hypermobility Syndrome.

The Zebra Club

I think there was some like this on Life Changing

Can’t remember what the actual issue was

I've been having pain in one leg. Just offered pain killers. I paid to see a Chiropractor yesterday. Really impressed with how thorough he was and how he explained everything. He got me to go through everything, then he examined me and diagnosed weakness in the leg, that it was shorter than the other leg as my pelvis was tilted, pressed in places that nearly sent me though the roof. After an hour he did some treatment and it felt more mobile but he said it would start to really ache and it did. I took painkillers last night and felt loads better this morning and the pain is already reduced. He has given me exercises to do and I go back next week. I'm really hopeful he is going to get it all sorted.

Hope you get some help.

Not sure I’d be ok with a diagnosis of EDS just after a session with an oestopath.

can you see a rheumatologist?

Sorry, It’s been confirmed by a GP. The GP EDS toolkit says that GPs should now diagnose and not refer to rheumatologist. This is a fairly recent change as Dd had to see a rheumatologist. I score highly on the Beighton score though. GP has referred me to a rheumatologist though just to confirm it’s normal hypermobility EDS and not vascular. But I have an official nhs diagnosis

Thanks, I hadn’t. Will check it out.

Have you had a nerve assessment?

I have EDS but an earlier injury has caused damage to the tibial nerve

I haven’t. I’ve been discharged from everyone to do with my leg pain now. They just said off you trot and put up with it. My osteopath has got me standing on one leg while brushing my teeth (my bad leg) and that has helped quite a lot. It still hurts but not the agony it was.

OntarioBagnet, glad you have got more of a conceret diagnosis now. I know it's hard to navigate getting to that point. I hope you find relief and some things that help you manage it.