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Swollen, painful knee, HELP

May 06, 2016 11:43 AM

I've had knee problems all my life, but the past 6 months I've been in so much pain with one of them that I can't put weight on it most times, it's swelling and agonizingly painful, I'm having to use crutches and it is getting progressively worse.

I've had an xray and MRI some on it and it is a normal knee, it isn't even showing any soft tissue damage (which the ESPT I saw tried to tell me it was but my GP said otherwise and I trust him more, he's a fantastic doctor).

I'm having a steroid injection starting next week to try and help the pain but they're also trying to make me do physio which besides making me hurt more (I've tried physio about 7 times, all for about a year long even though I'm only 17), they don't know what the problem is, so they're trying to treat something they don't understand.

My question is, have any of you had similar symptoms in your knees?

May 07, 2016 1:21 AM

Sorry your in that kind of pain. Chronic pain is horrible for everyone, but for someone who is young like you, it's just plain not fair. What does your GP think it is? I've had lots of knee issues, starting in my teens. I had a huge chunk of cartilage wedge under my kneecap that was not detected on an X-ray or MRI. It took four months for me to talk the surgeon into doing a scope. He removed the cartilage and recovery was pretty quick. I hope you figure it out quickly. Hang in there, and keep demanding they look closer.

May 07, 2016 3:04 AM

My GP doesn't have a clue, but at least he told me that, the ESPT that I saw tried to fob me off which is the worse because I could tell, I left and told my dad that he's fobbed us off and my dad didn't believe me until I told him what my GP had said, do you think I could have some cartilage or something under my kneecap that isn't visible on scans?

May 07, 2016 7:03 AM

thatEDSgirl, I wish I knew what to tell you with your knee. I started complaining to my doctor ten years ago, or more, about my knee. Back then I was in my 30s. I wasn't diagnosed with hEDS until I was 43. I was told there was nothing wrong with my knees and that all my pain would magically disappear if I lost weight. I tried to get each doctor I had between then and now to listen to me, finally I got one to listen, I think that may have been the one out of three times she did listen to me in two years. She sent me to an orthopedic surgeon. He took one look at my x-rays and told me I had bone on bone osteoarthritis. He gave me some exercises to try, knowing I couldn't do much with weights and all because of the EDS. He had me go light leg lifts with my knee straight and one-two pound weights on my ankle. He said to avoid stair climbing and anything that aggravated the knees and to lose weight.

Then the car door shut on my knee in October or was it November? Anyway, after a month of the pain just getting worse I gave in and had the surgeon look into it. The MRI showed that I had a torn medial meniscus. He gave me a steroid shot. That day it was miserable, my knee kept bending backwards all day. It was very painful for about a week, then I had one, only one wonderful pain free week and it went right back to the same pain level that it was before the shot.

I hope you have good luck finding answers.

May 07, 2016 7:09 AM

I can't extend my leg when it's painful, if i can, I can't put weight on It and he tried to tell me that I should extend it and put weight on it when that's what flares it, I'm fed up on stupid medical personnel, it got so bad I had to go to A&E but they can't find anything so they just keep fobbing me off 😧

May 07, 2016 7:18 AM

That's exactly how I explained my pain when I tore my meniscus last fall. You may have a tear that doesn't show up on an MRI. I've read where many people with hEDS have damage that only shows up when they do exploratory surgery. Does your knee "catch" when you try to bend or straighten it? Mine does a lot! It is so painful when it does too. My ortho doctor said it was both catching on the bone spur on the knee cap and on the tear in the meniscus.

May 07, 2016 7:23 AM

It's like a sharp stabbing pain when I bend it, but when I extend it it's like there's a pressure behind my kneecap that's forcing the kneecap off my joint

May 07, 2016 7:30 AM

That's pretty much how mine felt.

Two weeks after the car door shut on it, I was walking (still with crutches) when it popped. I thought it was going to get better quickly after that, but it didn't. It felt better for a short time, I was able to bend and straighten it, but it still hurt like the very dickens to walk on it. That was after I had x-rays, but before the MRI, I think my kneecap might have been out of wack and the pop was it going back in. But I guess I'll never know for certain, as I don't know if the doctor even looked at the x-ray images.

May 07, 2016 7:33 AM

Mine cracks sometimes and it can feel better after that but it doesn't last very long, maybe a day, but I'm just fed up and want to know what what's wrong

May 07, 2016 7:45 AM

I can understand that feeling. Hopefully you and your doctor can come up with some more ideas. It took me 43 years to get someone to listen to me about my body and get diagnosed with hEDS. Even now, with the hEDS diagnosis, I don't know how many times I've heard "I can't find anything wrong."

My ears drain so bad sometimes that the yucky stuff dries to the side of my face, but no one can see anything.

I kept trying for 20+ years to get help with losing weight. I was simply told to eat less. I was eating so much less that I was at 800 calories a day and still gaining weight! I was up to 305 pounds! I finally got someone to listen to me last year and she sent me to a wonderful nutritionist who actually knew what she was talking about. She made me up my calories to 1200-1500 per day. I lost 20 pounds in just one month! I have since then found a group in myfitnesspal.com called Eat More 2 Weigh Less and it has been very informative. I'm up to 1900 calories a day and have kept that 20 pounds off for 8 months and I am still losing slowly. Granted my weight goes up and down, but it's been a constant down swing of 1-2 pounds per month. I now have more energy than I know what to do with.

But my point is don't give up, it might take a fight, but keep fighting and you will find the answer. :)

May 07, 2016 10:01 AM

ThatEDSGirl, I have had those symptoms for years in both my knees but I was born with what they call "valgus" deformity of the knees and my kneecaps pop and move off to the side.. Quite painful and I've had several Surgeries. However, in the beginning they said it was a "normal" knee. If you have EDS, is that not hyper mobility? Then I would think that because of the extra "give" in your joints allows them the hyper extend then that puts tremendous strain on the tendons and ligaments that hold the knee together. I hope they are able to help you with the injections. Sending you reassuring {{Hugs}} and prayers for a good outcome. Hang in there. 💕🙏🏻🌻😊

May 11, 2016 1:36 AM

Extended scope physiotherapist

May 11, 2016 2:48 AM

My knees are swollen and very painful. I did have miniscus surgery on left knee. Specia list says it's the fibro, to keep stretching, ugh. Hurts so bad I literally get sick.

May 11, 2016 2:49 AM

I asked if I might have fibro but they said I was too young so just threw that idea to the side

May 11, 2016 2:54 AM

Are you seeing a rheumatologist for your pain? My dr. Is a big help, truthfully honest, sometimes my feelings are hurt, but at least he is helping me, and trying to reduce the daily pain and get to a remission stage.

May 11, 2016 3:09 AM

Yeah, I have a rheumatologist but they're the ones who aren't good for me, my gp is fantastic

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