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Chronic pain

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No one seems to know what is going on with my knee?

7 replies

OneWiseBlueSheep · 26/03/2025 13:28

In 2016 I fell at a festival into my tent, there was a rock under the tent lining and it went into my patella, on the outside of my left knee. I had multiple x-rays, no fracture detected, that winter I had a dull ache for 3 months that didn't go away and onset weakness. I went back to the doctor, he said it's early wear and tear, physio said it was tendontis, and strengthening worked for 3-4 years on and off.
The pain gradually got worse every winter, it increased to giving way, then my hip started giving way too. I went private for physio and that one told me it was ligament damage. So in 2022 I had an MRI of the knee to confirm it, a frayed meniscus was shown and joint space narrowing. Zero ligament damage. I was diagnosed with osteoarthritis by a knee specialist and my GP. I've managed it with swimming and over the counter painkillers ever since. I had a baby in 2023 and during my pregnancy my knee was substantially worse due to the relaxin in my body, I ended up homebound. In 2024 I had to switch to a 100% work from home role because my knee is so unstable.

2024 I fell over three times, my knee gave way crossing streets. The pain is much much worse. I can't weight bear well, I crawl up stairs when I'm in flare, I can't do a squat I fall backwards. I was in pain with my knee when I saw a physio for my back a week ago and he looked at my MRI and my x-rays, and told me point blank I do not have arthritis, I am too young to have it (30) and my knee looks great (from my 2016 X-ray) I was SO confused, I felt like I was going insane. I spoke to a locum doctor (not my GP) about pain management and he said "What evidence do you have for arthritis? Who told you this? We need to do an x-ray."

It's on my medical record, I was diagnosed by a knee specialist..is this normal in the NHS? I genuinely feel like I'm going loopy, I don't know what they need to see to confirm it, I feel like every medical professional I see has a different opinion on it and fights me on the diagnosis and then end up not being treated for the very real pain I'm in.

I will note here I am also being investigated for fibromyalgia and MS, my scoliosis because all sorts of issues with my gait, one hip is higher than the other, I limp naturally because of my thoracolumbar curve. My cervical curve causes nerve pain. I am pending imaging and nerve conduction tests.

I am sorry if this is a bit messy, I have really bad brainfog today.

OP posts:
BrentfordForever · 26/03/2025 13:34

So with the MRI they checked the ligaments (that connect the bones) but did they check the tendons (that connect the muscles )

how specific was the MRI (likely xray wouldn’t help, I have similar issues with my finger )

also have you tried very strong anti inflammatorries (celebrex, naproxen)

what meds are you on

silverearrings · 26/03/2025 13:35

I have no answers for you about your knee but wanted to share that I’ve had similar experiences with my GP/ local hospital regarding symptoms/ scans/ test results etc. I’ve had scan results and consultants letters that were available on my NHS App disappear and so when I ask my GP about them they automatically assume I’m wrong or making it all up.

I’ve never got to the bottom of my symptoms/ diagnosis but am lucky enough to have Bupa through work so will be using them once I have returned from an upcoming holiday (so as not to affect travel insurance!).

I am writing this to sympathise with you about how frustrating it is. Other people (friends/ family members) treat me like I just haven’t been assertive enough or clear enough as it’s just not possible that the GPs and consultants can be so unhelpful. I do think being young and female definitely play a part in our treatment.

OneWiseBlueSheep · 26/03/2025 15:12

BrentfordForever · 26/03/2025 13:34

So with the MRI they checked the ligaments (that connect the bones) but did they check the tendons (that connect the muscles )

how specific was the MRI (likely xray wouldn’t help, I have similar issues with my finger )

also have you tried very strong anti inflammatorries (celebrex, naproxen)

what meds are you on

I do not know the answer as they were not straight forward, the result said fraying meniscus, and joint space narrowing.

Sorry I don't know, the specialist wasn't very forthcoming.

I am not allowed anti inflammatories as I am being investigated for crohns, they make me bleed.

OP posts:
OneWiseBlueSheep · 26/03/2025 15:13

silverearrings · 26/03/2025 13:35

I have no answers for you about your knee but wanted to share that I’ve had similar experiences with my GP/ local hospital regarding symptoms/ scans/ test results etc. I’ve had scan results and consultants letters that were available on my NHS App disappear and so when I ask my GP about them they automatically assume I’m wrong or making it all up.

I’ve never got to the bottom of my symptoms/ diagnosis but am lucky enough to have Bupa through work so will be using them once I have returned from an upcoming holiday (so as not to affect travel insurance!).

I am writing this to sympathise with you about how frustrating it is. Other people (friends/ family members) treat me like I just haven’t been assertive enough or clear enough as it’s just not possible that the GPs and consultants can be so unhelpful. I do think being young and female definitely play a part in our treatment.

Thank you. I seem to be caught in a loop of trying to prove something so I can get help, but the help I need they tell me isn't available at my age.

OP posts:
OneWiseBlueSheep · 26/03/2025 15:14

I'm on amitriptyline 30mg and paracetamol (max dose) daily, ami for all over nerve pain
I cannot take anything else

OP posts:
AllLopsided · 27/03/2025 00:17

I would think you'd need new x-rays by now and possibly a new MRI. Can you get re-referred to the knee specialist?

I have knee arthritis and the joint space narrowing is a typical symptom.

I agree it's miserable. Mine is a newish diagnosis (on top of a back problem, a hip injury on the same side and needing an ankle replacement on the other side). Luckily I already have a good physio so we are trying to work on strengthening the knee, starting with some hydrotherapy because land-based exercises are too painful. I'm abroad though and pay for health insurance, so there's not the same care rationing as there is in the UK.

OneWiseBlueSheep · 31/03/2025 11:55

AllLopsided · 27/03/2025 00:17

I would think you'd need new x-rays by now and possibly a new MRI. Can you get re-referred to the knee specialist?

I have knee arthritis and the joint space narrowing is a typical symptom.

I agree it's miserable. Mine is a newish diagnosis (on top of a back problem, a hip injury on the same side and needing an ankle replacement on the other side). Luckily I already have a good physio so we are trying to work on strengthening the knee, starting with some hydrotherapy because land-based exercises are too painful. I'm abroad though and pay for health insurance, so there's not the same care rationing as there is in the UK.

Thanks, I had an X-ray done on Friday, just waiting for the update from my GP and they may do another MRI, I've been re-referred to a different knee surgeon. :) Hopefully I can get some gel injections so I can bend my knees and go up stairs properly again

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