Has anyone heard of Lipedema?

[firstofallimadelight]

I went to my doctors as I suspected I might have it. Gp had never heard of it and said it sounds like cellulite.
i wanted to know as i have chronic back pain and had read that it could be linked to back problems.
Is it actually a thing and does anyone know any real life experiences of it?

There was a documentary about this lady on Scottish tv, but it’s not on iPlayer now which is a shame. Here’s a bit about her
https://www.pressandjournal.co.uk/fp/lifestyle/health-and-wellbeing/4438101/lipoedema-skye/
https://m.youtube.com/watch?v=0-v6bYjY_u8

Hi just to let you all know I got my diagnosis this week. I went to a private clinic for assessment and the consultant is going to write to my GP too.
I have been advised to dry brush twice a week , moisturise daily . Eat an anti inflammatory diet and do low impact exercise . And wear compression leggings

Yes, it's definitely a real condition, although it still seems to be under-recognised. Someone I know was initially told it was just weight gain, but was later diagnosed with lipedema after seeing a specialist. If you still feel it fits your symptoms, I'd trust your instincts and ask for a referral or a second opinion.

For this you should get a complete checkup so no confusion is left and you get a full diagnosis and management plan according to your condition.

I saw a lipedema specialist early this year (privately ) and got a diagnosis. It’s still separate to chronic pain at ortho consultant and physio don’t believe it exists and lipo specialist knows nothing about spine/discs

My yoga teacher has it and recommends a few daily things to reduce it- dry brushing, a pose called legs up the wall, bouncing on a rebounder or trampoline and holding arms or legs pointing at the ceiling and smoothing with the other hand/both hands towards the lymph nodes, from what she says the lymphatic system has no pump (like the heart is to the blood,supply) and needs manual movement in some people

That’s depressing, considering there has been a lot more public about it in recent years

It’s not lymphodema

I believe I may have it mildly.

I have a slew if other health conditions which are all autoimmune diseases, vascular issues and Connective Tissue disorders (not EDS).

I was getting painful heavy legs. Distinctly different from my usual Rheumatoid Arthritis joint pain and developed quite deep painful dimpling which was very hard, not like usual cellulite.

As I have a rare disease (less than 1:1m) and 5 different consultants noone really wanted to take any ownership over this.

I read about lipodema and started using a vibroplate for 10-20 mins a day doing some light exercises on it if I was able. If not I just stand or sit on it. I dry brush and moisturise (I never really did before due to laziness - I now love the Olay regenerist niacinimide body lotion)

The best thing I do is get a lymphatic drainage massage every 2 weeks to a month. Luckily Ive found a very good massage therapist who does an hours massage for £45 so its just about affordable for me.

The pain and heaviness is almost gone and the dimpling is much less noticeable.

I was in an early stage if this is what it was but my thighs have reduced by about 3 inches. When I started the massages were really painful but now they aren't too bad. It's only if I miss about 5 or 6 weeks that I can feel them be a bit painful again

What kind of doctor did you see to get your diagnosis?

I have it severely in my legs, hips and upper arms. I have the ankle cuffing and I've lost 7 stone with none coming off my bottom half, so I now look really out o proportion.

No, and I didn't suggest it is, it's lipodema the same as the original poster has