u/between3_20_chars

Both my consultant and physio agree that physio won't help with CECS. I kind of understand the idea behind CECS but I don't really understand why physical therapies can't help. The reason why this makes no sense to me is because why would a compartment which was previously fine suddenly become a problem? CECS isn't something a person is born with. So whatever caused the fascia to become restricting or the muscle to swell too much (or whatever CECS actually is- help me out here!) -couldn't that be reversed? Showing my ignorance here, I know.

I feel like this is one of those medical conditions which in a hundred years time doctors will look back on and be astonished at how we didn't know how to treat it.

So maybe I just need to hang on for a hundred years or so until they have it figured out :-)

hi everyone, I'm struggling to understand the cause of my (anterior tibialis) leg pain which is ongoing for over 4 months now. A load of tests have been done and my consultant has said everything (including paes) has been ruled out except CECS or nerve causes. I really don't want it to be CECS. At the moment my leg and knee are low-level painful as soon as i stand up. Walking makes it worse. But consultant said if it was CECS my leg would feel rock hard to touch. Mine never is (but then, I stop walking before it gets really really bad). So my question for you guys is whether your leg is generally hard to the touch when it gets painful (so does the tight pressure cause the pain)? I'm terrified of the pressure test as I know it's invasive and carries risks. For the same reason I'm petrified of surgery. However at the moment I really can't move enough to stay fit (I need to go so slowly and for only ~15 mins) so I feel so worried. Consultant says my case is very atypical (I'm not athletic, didn't suddenly increase activity, quite skinny). Thank you everyone

First, sorry for another post. I've posted here before with similar questions. I'm just SO confused and while I'm seeing and have seen several specialists, my symptoms are so hard to describe and so variable, plus I don't think the specialists have much in depth knowledge of CECS anyway. So..... what do you experienced people think?

• started 4 months ago. Just brisk walking. More than 2 hours a day of brisk walking used to be very normal and very doable for me. I could easily walk 90 minutes or more, quickly.
• Gradually it became harder to walk because I'd get what felt like a muscle ache along the outside of my shin on one leg (I now know this is the ant tib)
• Reduced walking right back to try and settle the symptoms. Despite reducing walking, i still got the ache. Reduced more. still pain. Now I can walk for 15 minutes but only very slowly. Ache is still present but manageable. For the past three months walking tolerance and pain is getting worse.
• Epicentre of the pain is not far below the knee, to the outside. So I was initially wondering about a stress fracture to the upper fibula. It's not that (confirmed by imaging). MRI of leg is normal.
• Recently slight pain is there all the time as soon as I wake up. Sometimes I get a weird 'throbbing' pain at rest.
• I also have a lot of pain on the inside of the knee, which crept up at about the same time and has also been getting worse. This seems to be ligament related (According to physiotherapists)
• Any pain/ache is greatly reduced when I sit or lie down.
• The leg pain is best described as a deep knotty angry ache. If you can imagine a really bad tummy ache? Kind of like that but in the leg. I don't know if I'd call it 'pressure'. I don't feel like my leg is going to explode but then I never let the pain get that bad. I know it gets worse if I walk faster or for longer.

The knee orthopedist I saw said he thought CECS was not likely because it's usually in the calf (which kinda just shows he doesn't know much about CECS). The sports medicine consultant said CECS would be on his differentials amongst other things but didn't really give much indication what his leading diagnosis would be - just said more tests are needed to rule anything in/out (which I can't afford to do privately).

I have seen two physiotherapists who both thought biomechanical pain is the most likely cause. But I also think they didn't know an awful lot about CECS (apart from the 'classic' presentation).

I've had an angiogram to look for PAES but all the clinicians think it's pretty unlikely. (results not available yet). Same situation for an MRI I had of lumbar spine to check for nerve issues.

Sorry for the really long post. If you got this far, thanks for reading :-)

hi all I'm in the middle of dealing with chronic leg pain which has left me unable to walk for more than ten minutes very slowly without my left leg going nuts from pain. CECS is a possibility but nobody is sure (no stress fractures and no injury). Whilst I wait for the NHS to decide what to do with me (I am anticipating a very long wait) just wanted to know whether there are any simple tests which might indicate CECS more or less likely. My physio thinks my anterior tibialis muscle needs strengthening (I'm wary because why challenge a muscle which is the painful one?) and has me doing this: lean with back against a wall, feet a little bit away from the wall. Raise toes up abruptly so weight is on heels (back still against wall), then lower toes slowly to ground. So it's activating the anterior tibialis muscle. If I had anterior CECS, would this immediately cause pain?

I find it hard not to think back and feel bitter about what I've lost. Coming to terms with the fact that this is permanent and I can't get my old like back. Feeling guilty about feeling resentful and jealous of people who have mobility and no pain. Feeling frustrated that medical professionals are drawing blanks and have given up trying to help. Any tips on how to deal with this? Or just solidarity. Thanks folks

Edit: thanks everyone for all your replies and helping me not feel so alone with it. I hope everyone finds a way of coping that works for them.... and it's clear we all have different problems, different intensities, but we're all feeling it !! Thanks for the support :-)

i get really odd sensations like my muscles feel full and heavy or just weird like they are about to cramp but they don't. I am terrified it's something serious disease

isn't that weird??? Do you think tis could be RLS? Often at night, sometimes during the day when seated. feels like a weird crawly half-tickle, half-cramp. Maybe it's something else entirely!

sorry if I'm posting in the wrong sub. Had leg pain for over three months, one specific muscle ,just keeps getting worse, cannot walk. Came out of nowhere. Had MRI, seen physios, orthopedic consultants, doctors - everyone just says it's unusual but can't say what it is. I am really struggling to cope mentally because I used to be very active and now I've been unable to walk more than 10 minutes and I feel like nobody's able to help me and there's no hope. I'm so depressed. Can't get to work so every day I'm just alone in my flat with the pain and the worry. Can anyone suggest coping strategies or books, etc? Tried therapy it was a waste of time and I can't afford it anyway. I know this is not the place for a diagnosis (and I'm trying to get help from the NHS) but an autoimmune cause is not impossible, I have been referred to rheumatology, but I'm not sure if autoimmune or connective tissue problem can cause muscle pain. Anyway thanks everyone

hi all, I just had an MRI (my fifth) and it seemed way louder than previous ones. I was given headphones, which the radiographer placed, but not ear plugs. My question is, is the hearing protection well regulated & adequate at UK scanning facilities (even if, subjectively, the noise felt really horribly loud)? Would the radiographer have realised if the headphones weren't covering my ears properly? (I don't know whether radiographers are really vigilant about this?) I had ringing in one of my ears afterwards it gradually faded over 20 seconds but then it happened again. Thanks

45 F height 166cm weight 50kg. Started as a aching burning pain in my lower leg along the outside (tibialis anterior?) two months ago. Immediately reduced my activity to slow short walks (15 mins) but despite that symptoms got worse and spread, now the whole lower leg is stiff, aching, horrible tight feeling like I've been wrapped in plastic, occasionally sharp pains in outer shin and calf.... this feeling comes on now as soon as I stand up and weight bear. I now can't walk at all. I am desperately depressed, idk what on earth could get worse and worse despite barely moving at all. MRI scan showed no bone stress or muscular pathology. bloods were normal except for a couple of mildly elevated anitbodies (ANA). I'm on a waiting list to see an orthopedic consultant. But I'm so upset and in despair.... anyone got any idea at all what might be going on??

hi all, I haven't been diagnosed, I'm on an agonisingly long waiting list to see someone on the NHS. It started as anterior tibialis (outer shin) pain after lengthy walking, but was always pretty manageable and not more than a bit of an ache really. Then it got worse. I reduced my walking right down to just ten minutes, to try and get the symptoms to settle. But despite that, over the past 2 months they have got worse. I get this tightness/pressure feeling like a band all around my leg right at the top just beneath the knee. At this stage, it occurs as soon as I stand up. I know I don't quite fit the normal CECS symptoms and I've been told by a physio it seems unlikely, but I'm freaking out a bit since reading on this sub about how bad it can get and possible nerve damage (??!). Not looking for a diagnosis but would be interested if anyone's experienced something similar.

Sorry if I'm posting in the wrong sub. I'm just wondering how often or how likely is it that a radiologist can just not spot something on a scan? Obviously it depends on the scan and the radiologist (!!) but in general - are people justified in seeking second opinions? In my case, I had an MRI of my leg, I'm worried that the radiologist might have missed a stress fracture to the fibula. So do you think that a bone stress response would usually be visible on an MRI? The radiologist who wrote the report seemed pretty experienced so I want to trust them but I'm a person who worries a lot..... thanks!

hi all, so I've had this hip stiffness, pain, swollen feeling for a few months. X-rays showed totally normal and physio said it was soft tissue impingement, whatever that is, and gave me some exercises to do. I've been doing them every day (glute bridges, lying side leg raises, band round legs) for a few weeks but it feels like it's getting worse, it feels really 'big' and stiff when i am walking. So my question, does anyone recognise this non-bony hip impingement even with a normal xray? And is it normal for physiotherapy to makes things feel worse to begin with? I'm going to go see the physio again of course for a follow up and ask them this stuff but I wanted to get people's experiences from this sub. Thanks!