Does anyone have Lymphoedema?

[Cazie50]

I developed Lymphoedema in my left arm, hand and shoulder about a year after my Fibro symptoms started. It's never been looked into, but I have attended a Lymphoedema clinic (not to diagnose) just to try and reduce the swelling. Because of the pain though, that couldn't be achieved. Does anyone know how this could relate to Fibro.

[MissKittycat]

The only reason I can think of.. is to do with the meds you're on - if you're on Gabapentin, it can be a side effect of that, I have it in my legs at the moment... other than that, I'm not sure. Fibro takes in a wide umbrella of symptoms and what doesn't affect one, can affect another.... Have a look at the patient information leaflets in any medication you're on and see if that helps xx

[Cazie50]

I developed this before I was on Gabapentin, although it may not be helping it. It's very much connected to my pain as that is the one area that is the worst. I couldn't keep using the lymphoedema arm sleeves as it just increased the pain. I can't get my GP or the Chronic Pain clinic to investigate it as they just think it's all part of the problem

[Betty67]

I too have lymphodema and runs in the family, my mum has it and so did her sister and mother. Local health service sympathic but no treatment as it is not caused by cancer. My mother tried to get help 20 years ago and had the same answer, her legs are now so large she has trouble finding clothes and shoes and told why didn't you come to us sooner !!!!!!!

I wonder if fibro is a sympton of lymphodema rather than the other way round.

Jacqueline

[Cazie50]

Yes, I wondered that to Jacqueline. No one can give me any answers as the Lymphoedema clinic said the majority of people who have Lymphoedema don't experience pain. So, I'm no further forward.

[Betty67]

Hi Cazie

Just wondering how you are getting on? I was told there was someone on Embarrassing Illness with lymphoedema and they were able to help but I missed it.