diagnosed at 65

[jaberwocky]

Hi I was only diagnosed with lipodemia 2 years ago, well to be honest I saw a post on facebook , read everything I could , then found the NHS webpage and took it to my Dr. who researched further and agreed that yes I did indeed appear to have this condition. At first I was very pleased to know I had something that had a name ! I also have arthritis in my knees but due to the size of my thighs I cannot have knee replacements. The specialist just told me I was obese and even suggested Bariatric surgery, I got upset..told him to look at my notes, my Dr. had put lipo down at my request.I even lifted my top to show my flat stomach and 34" waist, he just shrugged and walked away. To be fair he did later write and apologise , he had even been in contact with a specialist in London and told me that this specialist had looked at my leg photos and said I was a typical patient. But there was no real treatment except lots of low impact exercise. So I go to aquafit twice a week and toning tables twice a week and do the exercises OT gave me. I do look and feel fat.. very painful knees stop me walking far but I do what I can by eating healthily and keeping active.

[aepyornis]

Hi there!

First of all, congratulations on getting a diagnosis and fighting for it. That's so important and I'm afraid many of us only get it after decades of the disease progressing, if at all… I am lucky, I only had to wait for 15 years.

Aquafit is great for us, I also do aquabiking and it really helps. Regarding diet adjustment, I think a lot of us are doing great following the RAD or LCHF diets if that is any help.

The one thing that helps me the most is also compression. On the NHS, you can get 2 pairs every 6 months I think, on prescription. I really helps with the swelling and the pain and I could not do without. If getting a prescription is too complicated or slow, there are a lot of brands who do off the shelf compression (versus made to measure). If you can get it, manual lymphatic drainage (MLD) helps and I would definitely try it out if possible.