Am I out of options?

GemLou84

Hi everyone, I can't believe that I am only just discovering this forum after so long.

I've suffered from hypermobility, ED and patella dislocations since the age of 11 (now 38). In the past 20 odd years I have had 6 surgeries on my right knee, mainly to stop the dislocations and "preserve the joint" I am told. For the past 2 years I have not been able to walk unaided due to the pain, weakness and instability in my knee, I've had to postpone aspirations of nursing training though I am still working in healthcare so all is not lost.

I had always been told "you'll eventually get arthritis in the knee and need a replacement", last year my orthopaedic consultant told me that we were at the point where the arthritis has taken hold and I needed a knee replacement but I am too young for it. Since then I have had 3 steroid injections and 1 unsuccessful attempt to drain fluid from the knee. The report from the consultant says "all options of joint preservation and pain management have been exhausted and patellofemoral replacement is the only appropriate course of treatment but for the young age of the patient".

I have tried so hard to keep positive, I keep an eye on my weight, do physio, as much exercise as the pain allows but I feel like I am now just being told I have to wait until I am older to be eligible for a knee replacement. I am a single parent and there are a lot of things that I cannot do with my little girl because I just can't manage the movement.

Does anyone else have a similar experience? I don't really know what to do next, I don't want to be taking painkillers for another however many years but I can't cope with the level of pain and restriction of my movement.

Thank you for reading my ramblings.

Anna

Hello @GemLou84 and welcome to the online community,

i understand you have been diagnosed with hypermobility, ED and patella dislocations since the age of 11 and are now 38. You’ve had six surgeries on your knees and in the last two years you’ve been unable to walk unaided due to the pain. Your surgeon has said you are too young for knee replacement and you don’t know what to do next as you are finding it difficult to cope with the pain and the restriction in movement. As a single parent, you can’t do all the things you want to with your little daughter because movement is too painful.

I’m glad you’ve joined this community - all our members live with some form of arthritis and are used to living with and dealing with pain. I’m sure some will come to give you support. Ive linked to a recent thread where members have given some suggestions to help deal with their pain. You might find some help here:

https://community.versusarthritis.org/discussion/comment/704145#Comment_704145

You also might like to look at top tips for dealing with knee pain, from the Versus Arthritis website:

https://www.versusarthritis.org/news/2021/april/top-tips-to-help-knee-pain/

Do have a look round the forum, join in any conversations you feel comfortable with and ask any questions you may have,

Anna ( Moderator)

stickywicket

Are you out of options? Well, it doesn't sound great but I personally wouldn't give up just yet.

My knees were replaced in 1981. I had one revised 27 years later. The other is still there but in a total, inoperable, very painful mess. There are good reasons why they don't like to put them in too early but I'd had RA for 20 years and OA for a little less. I was 25. You seem to be in a similar position ie your body is against you given the ED and hypermobility.

Many places now have blanket rules about age and weight . I think maybe you need someone to argue your case. What about your rheumatologist? GP even? Last resort might be PALS.

Don't give up. Keep fighting and hoping.