I have written before about my legs but I am still non the wiser. Diagnosed with pmr in 2014, diagnosed with seronegative RA, then Inflammatory arthritis in the months following. They seem to have dismissed the pmr at rheumatology and the last man I saw decided it is all OA. I know that is ridiculous and my gp thinks it is still pmr. I know from an mri that I need a new hip but the last rheumy said that I may need two knees as well. I don't think so. My knees are my greatest problem as I can hardly walk, they are so fat. I have had a few attempts of having fluid drained but that, plus steroid injections don't really do anything. The fluid seems to be around the front, back and sides of the knee. Has anyone else had this? My gp thinks it is misplaced fat caused by steroids. I might believe her but it changes and some days it is not quite as bad but will be worse the next day. Rheumatologists don't seem to know or care. I also have very weak legs and they're getting weaker. Does anyone recognise the symptoms and what was done about it? Has anyone been referred to the Muscle skeletal clinic for it? I am running out of ideas and am going to see my gp this Thursday but know she will say the same, she doesn't know. I feel someone somewhere must know and care about these horrid legs. I was told I had a Bakers cyst but the dr didn't feel or examine my knee and a nurse who tried to drain it thought there wasn't one there.

17 Replies

  • Just wanted to send my love and sympathy for what you are currently going through. May it be resolved quickly.💙

    My knees do have fluid around them the GP demonstrated moving it around. I get sudden stabbing pain in them coming down stairs. I have imagined that it is arthritis but it not disabling like your symptoms.

  • I was told by the rheumatologist nurse that fluid in the knee is in a capsule, yet when she tries to get it out she presses on what looks like fluid on the outside of the knee cap. If you think you have arthritis do you feel your bones grating when you walk? I don't and my chiropractor said anyone my age, 63 would have some arthritis and I still had good movement in the joint. It is complicating when you get told so many opinions but no one wants to do anything about it. Thank you for your reply, I hope yours doesn't progress to being like mine.

  • No I don't feel a grating sensation in my knees, I have been told that knees are a badly designed joint. I have moderate cervical spondylitis and can certainly hear and feel my neck crackle.

    I wonder what excites Rheumatologists? They seem ( from these pages) to be a bored unsympathetic lot. Thank goodness for the stars like Dr Mackie.

  • OA can have an inflammatory effect on joints - my right knee was excruciatingly painful and swollen and sore before replacement (as was my hip).

    But I have to say that PMR targeted my legs from the beginning. I had the sore shoulders and painful hips, but my legs were always the main cause of my discomfort. That hasn't changed and my mobility gets less almost on a daily basis now because I can only walk so far.

    Is there another GP in the practice you could see? A fresh pair of eyes looking at the problem might help. Have they put you on a water pill to see if it just a fluid build up?

    It might help if you can see a musculoskeletal consultant, could you ask to be referred?

  • My Mother had pmr start in her knees and steroids worked straight away. However when we got to see the first rheumatologist he insisted you didn't get it in your knees. Others said the same thing. My dr thinks it is still pmr with me but after over 3 years surely I should have got lower than 17.5 with my steroids. I flare when I get to about 15mg.

  • I had problems with my knees that one rheumy announced was OA, she "could feel it". The tendonitis and synovitis (which is what it probably was) went with pred and haven't come back in 8 years.

  • What dose of steroids were you on to make the tendonitis and synovitis go? I have been on 20mg and it made no difference.

  • What dose of steroids were you on to make the tendonitis and synovitis go? I was on 20mg and it made no difference.

  • It's not really my dr at fault, she referred me to rheumatology to start with but they didn't take much notice that she thought I was A typical for pmr. The fluid round my knee isn't the right type apparently as you can't leave finger marks in it.

  • I have been on 12.5 mg prednisone for about a month now for one. It has helped.with the pain but I also have real weakness in my legs. I'm afraid to walk anywhere

    I have had spinal surgery and they always said my leg problems were from my back

    I am type two diabetic and having a hard time controlling the sugar cravings. I am worried about my weight as I had gastric bypass in 1993 and have kept it off.

    Now I had an MRI and have told I have a femur fracture not displaced I have always had bad pain in my right thigh

    That could explain

    What the heck is going on

    I'm 82 and that does not help

    I am discouraged

  • I have weak legs but either caused by steroids or pred so I am told. I know I am getting weaker and it really bothers me that no one seems to be concerned or doing anything about it. An mri showed I had Avascular necrossis so do need a new hip but it worries me how I can do the exercises afterwards with my knees or legs. I am 63.

  • I'm surprised anyone is blaming fat knees on fat - if you see what I mean. Especially if it varies from day to day. That is more likely to be fluid.

    Sounds to me as if you need to see a "knee man". Where are you? Know a brilliant one in Middlesborough - and an appointment with his specialist physio who only works with him would probably shed some light on it. There will be equally good people elsewhere though.

  • I am in Cambridge. What is a knee man? I feel if I were an animal a vet treats a whole animal. An acupuncturist treats the whole body, so does a chiropractor but I always seem to have things wrong that anyone I am seeing doesn't deal with. To be honest I would be happier if my dogs vet was going to operate on them as I trust him a lot more.

  • An orthopaedic specialist who is further specialised in knees. Orthopods often just deal with one bit, hands or feet or trauma for example. It means they do lots and lots of one thing - and if that is what you have, that's what you want!

  • I didn't know such a person existed, orthopod sounds like an inner sole sort of person, thank you.

  • You might see another rheumatologist... PMR has no official diagnosis however if prednisone makes your symptoms go away then they say you most likely do have it. Pred works differently for everyone.. we all are effected in different ways but a "good" rheumy can always help with the side effects of pred etc. You need a good orthopedic Dr for your knees and hips. I have had 2 knee replacements ... have hip problems probably bursitis have PMR, GCA, RA & OA so it just goes on & on... My rheumy is the best ... and I have a good orthopedic Dr. be sure to have the right Dr for the right problems. A good rheumy is a must however. Good luck to you.

  • I have seen about 6 different rheumatologists in 3 years, so many different opinions. Steroids did make all the pain go away very quickly when I was first diagnosed with pmr. I know I was told to reduce too fast to start with but I reduce much more slowly now. I am on 17.5 though and started on 15mg three years ago.

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