Ongoing leg problems, beginning to think amputation might be the solution

[QuebecBagnet]

I’m sick of being in so much pain, I’m sick of the doctors not knowing what’s wrong, I’ve seen every physio going and just don’t know what to do now.

started in 2018, pain in the back of my calf, one specific spot ached at times like a real deep ache (not a DVT, I’ve had that rules out). Progressed to a severe ankle problem in that leg. The ankle problem is worse and that’s what everyone focuses on but I keep saying I think the calf issue has caused the ankle problem but nobody seems to listen.

my ankle is unbelievably painful, it clicks like mad and I’ve lost a lot of movement in it. I limp badly, can’t walk down stairs, struggle to put my foot flat on the floor as it feels like my calf is too tight. I used to run a lot but have had to stop pretty much all exercise. If I walk the dog I’m in agony the next day, can’t do BodyPump anymore as it affects my calf. In spin classes I can feel my calf pain increasing, it’s like it’s swelling internally and the pressure makes it feel like my leg is going to explode.

ive had mri, Ct scans. They found an issue with a cyst inside the bottom of my fibula which they removed. During the op they found my peroneal tendon was torn so fixed that. It’s made no difference. I feel like the tendon dislocates at times though not sure it would cause all these issues. I told the consultant who got me to wiggle my ankle about and said the tendon wasn’t dislocating.

I’ve had to buy an automatic car. Am thinking we need to move to a bungalow as I can’t manage the stairs anymore. I feel unsteady on my feet all the time. I paid for weekly physio for six months and it’s made no difference. Physio didn’t really seem to know what was going on, said my calf is really tight.

im in bed now in agony. Calf feels tight and like there’s lots of internal pressure, ankle is throbbing and foot is numb with pins and needles. I think I’d be better off with a prosthetic, I’d surely be in less pain and probably more mobile.

That soinds awful 🙁

I wonder - on the basis of no medical knowldge whatsoever, if you have a nerve problem? Have you had an MRI of your spine, where the leg nerves begin?

Also, have you been checked for diabetes?

Apologies if I am stating the obviois or am miles out, but I remember a woman on here recently had weird arm problems ithat turned out to be a trapped nerve

Have they investigated neurological issues like complex regional pain syndrome?

You suggest you are still exerciing (spin class) despite the pain. Have you tried to properly rest the bit that hurts and only do exercise that doesn't involve it (eg upperbody weights, perhaps swimming) and really proper resting the leg. Yes you will lose strength for a while. But I get tendon problems and I find the only answer is to switch to exercise that doesn't "set it off" for as long as it takes, which can be two or three months. Then rebuild really carefully (im quite old , so resigned to it being slow!)

No, they haven’t done an mri of my spine, nor has the doctor said anything about neurological problems.

i’m waiting for another consultant appt so will mention those. I have wondered about complex regional pain syndrome and my physio did think at one point I might have it (following the surgery) but then a while later said I didn’t have it.

I fully rested it while waiting for surgery as I was in a plaster cast for four weeks. Then the cast came off and I went back to exercising. Then I had the surgery so had at least four weeks of no exercise and was then just gentle cycling for weeks once I started exercise again.

I’ve wondered if I might have compartment syndrome?

You do know that amputation may not help anyway! Many people still have the pain after amputation. It's not a fix.

Did something hapen in 2018 to set it off?

Have you seen a podiatrist specialising in biomechanics?

Sorry if this is a stupid idea but have you been to see a functional movement specialist or osteopath or someone of that nature? If not, would you be willing to? After some awful knee clicking, weakness and burning pain for me that went for years with no joy from physios etc , an excellent osteopath concluded that it was nothing to do with my actual knee; I have a mild scoliosis that was causing me to use my leg muscles unevenly (to compensate) which was causing extreme tightness in my thigh which was pulling my knee cap across too far... anyway the detail isn't important but what was life changing was that they looked at it really holistically and actually figured out the cause. Then they figured out the treatment. I can now use my knee AND it is pain free which is amazing.

You might have done all that already with no luck so apologies if so, but just thought I'd mention just in case

I don’t think so. In the summer of 2017 I fell down a few steps and twisted that ankle, but after hobbling about for a few days it was then fine for months.

the only think in 2018 I was sitting on trains for 3 hours a day on a horrible model of train with barely any room, by the time I had my bag by my feet I think I had to twist my ankles/feet a bit…..not helped by the fact there was a heating duct along the floor which also lessened the foot room. It was during this time the leg pain started, but it was initially calf pain followed soon after by ankle pain.

ive got a phone appt with the consultant next week.

I'd second a chiropractor or sports physio. But you might need to see a lot before you find one worth it.

Had my phone appointment with the consultant today and most recent mri shows multiple small tears in the tendon. Not a rupture. This is following tendon repair of a rupture just over a year ago.

he says I have tendonosis and wants to see me in person and examine me. He says there are treatment options but I have to say I’m not feeling very confident or positive. He thinks all the pain is coming from this. I might start a new thread asking specifically about tendonosis

Well I suppose that might count as some sort of progress, if they think they have a cause. Hope you get your appointment soon, it sounds so miserable

Have you seen an osteopath?

No I haven’t. Must admit now I know about the tears I’m assuming it’s beyond a physio or oesteopath?

IMHO you are far more likely to get effective treatment to help solve and prevent reoccurrence of this sort of injury caused by the function of your foot/leg from someone like a podiatrist who can look at how you use the limb and offer treatments accordingly than from a doctor.

Obvs I am not suggesting you don’t continue with the doctor but you could try a podiatrist as well.

https://www.manchesterpodiatry.co.uk/what-we-treat/foot-posture/achilles-tendonitis.php

Trying again with the link

It’s not always a terrible idea. You may prefer a functional prosthetic to a dodgy leg forever. I recommend’footless jo’ on YouTube as someone who talks about the reality of the decision.

Thanks for the podiatrist link @RoseGarden22 I did actually see one about 3 years ago and then paid about £150 for custom orthotics which don’t seem to have made any difference. He said I had terrible over pronation/flat feet

@KleineDracheKokosnuss thanks. I’ll check them out

You need to stop exercising and give it a proper long rest . In the meantime you can rent stairlifts so you could do that temporarily to help at home . Hope you get to the bottom of it , chronic pain is awful to live with .