Stage 4 OA, Lipodema and more. Surgery not an option. Anyone else like me?

CoffeeBear44

Hi there.

Im 46, have stage 4 OA in both knees, diagnosed in Nov 2021 (bone on bone and calcification) and cant have surgery. They are not even sure at this point if they can do cortico steroid injections due to my morbid obesity and the limitations of the procedure table they would need me to lie on.

I have severe Lipodema and lymphedema, (part of the cause of the obesity, as lipodema fat can not be burned off by dieting) making my legs too large to operate on and a higher risk of complications post surgery. (thanks to a lifetime of being told im just fat, I was diagnosed just 3 yrs ago, too late to do anything about it, and as I am also peri menopausal, my hormone levels are now making the issue worse, so my legs are getting bigger and more painful)

I also have Fibromyalgia, Hypothyroidism, hashimotos, GAD, Depression and a host of other issues that are, in 1 way or another, related to one of the other illnesses.

Ive been referred to a specialist pain management anaesthetist for my knees but it looks like the wait time could be 6-12 months, and in the mean time I am in more and more pain that I cant manage.

I cant even take anti inflammatories anymore, as I now take blood thinners, and my other prescribed pain meds do nothing for the OA. When my knees lock up or slip as I walk its horrific and can be embarrassing if im in public, as it makes me yell rather loudly.

I have tried so many alternative remedies and am always looking for more, but with the cost of everything rising dramatically atm Im now hitting a brick wall with how much I can help myself with these options.

Anyway, thats me (in the shortest possible introduction) and Im just looking for anyone in a similar situation that maybe has some suggestions that Ive not yet tried. Please dont judge me because im obese - Please dont tell me about diets and losing weight. Trust me when I tell you have tried everything short of sewing my mouth up... I have lost 5 stone, but not 1 cm of it came off the circumference of my legs, hips or upper arms :'(

Im very lucky in that I do have a great GP, and he is just as frustrated with the system as I am. I also have a really nice Ortho consultant who is doing all he can to find ways to help me, but again, with the limited options via the NHS its not proving easy. My ortho also works as a private consultant, but I could never afford to go down that route, and where I live, despite having 4 hospitals to choose from, none of them have easy access to the bariatric equipment needed to allow me to get some of the treatment options he wants to offer me.

Brynmor

Hi @CoffeeBear44 welcome to the Online Community.

Thankyou for posting your story. Having a medical condition that leads naturally to obesity is really difficult to cope with and it is preventing surgery that would help with your osteoarthritis.

Its great that you are getting referred for specialist pain management but having to wait whilst in pain is really difficult.

The information on pain on our website may have some useful tips that you may find of some use - see under self-help

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

Do join in across the community, ask questions and say how you are getting on. You are not alone!

All best wishes

Brynmor

wazz42

Hi

What great news that you have a good medical team around you. Lots of times that is a real issue and it must be so demoralising.

I just wanted to say Hi and send you some very gentle ((((())))) hugs, I can imagine your legs must be very tender - I have spent a long time being told I have water retention when I go in with 'fat ankles' but then they do the press test and it's not, and then they don't go anywhere else!

I have been able to live with it, which is what you have done up to now, I hope someone posts soon

xx

CoffeeBear44

Thanks to the 2 people who took the time to reply. Shame no one else did. So much for this being a supportive community :'(

I never seem to get anywhere on forums :'(

stickywicket

I’m sorry you feel disappointed with the VA community. There are a lot of people come on here and very many only get one comment or two. You are not being singled out. One or two of us used to try to ensure between us that everyone felt they’d been heard but, frankly, there are just too many people coming on now for that (although the Mods continue to do a great job) and we, too, are living with pain, disability and other problems both medical and non-medical. We just can’t be there for everyone.

I did read your initial post but I wasn’t familiar with many of your diseases / illnesses and, having just managed to sprain an ankle (almost as stupidly as yesterday I managed to scald a finger😆), just lacked the impetus and energy to look them up.

On here, we all have arthritis in one form or another – with some of us greedy ones it’s one form AND another😉. Very many can’t take NSAIDS and many get depressed about the whole thing. You have a great deal in common with many of us. I confess, I was put off by your “Im just looking for anyone in a similar situation” because, in all my years on here, I can’t recall anyone in a similar situation. We can talk about arthritis, pain, exercises, pain meds, access to surgery and consultants and I’m sure many would be willing to if you put a thread up on the Living With Arthritis forum or just joined in on existing threads. We get the occasional person with thyroid problems. More with depression. These are areas you could explore.

Or, you could just pop into ‘Val’s Café’ on the ‘News and Chat’ forum where I’m sure they’d make you very welcome to chat about non-arthritis issues. You ask us “Please dont judge me because im obese”. Well, please don’t judge us because we don’t really understand what you want from these forums. We can’t understand what we have no experience of.  Why not just hop over to Living With Arthritis and/or Val’s Café and look at, or join in with, the ‘conversations’ going on? People really are friendly. Give it a go.