Lympheodema with Covid

[Perce74]

Hi all

This is my 7th year of Lympheodema in both legs after surgery for Cancer.

I have been dreading catching the dreaded Covid virus and have been working in an environment where several of us caught it.

I have really suffered extreme pain in both legs during this duration Pain killers just about eased this.

I contacted my Lympheodema clinic who were unhelpful told me to ring the Drs surgery.

Basically, I just wanted to know if this was purely down to the Lympheodema/Virus or just a symptom of the virus anyway.

I am terrified of catching the virus again as informed to ' wait my turn' for the vaccine.

Has anyone else experienced this?

Thanks in advance 😁

[Canada91]

Sorry to hear about your worries not really being listened to. Sometimes all you need is a good conversation with an expert in this field But time costs money. I was born with a type of Lymphoedema called Milroys disease and it took 31 years to get a diagnosis. Unfortunately standard treatments haven’t worked for me But as soon as my oncologist confirmed the type I had I was automatically put on the Pain Clinic lists. I have had all sorts of different pain killers over the last 30 years. From paracetamol to spinal Epidurals which didn’t work I am still mobile with the use of mobility aids inside the house and was put on a very low dose of SLOW RELEASE MORPHINE TABLETS. Best thing I did was buy a recliner chair so that the swelling in my feet has reduced plus my children are grown up So I sit down more. Unfortunately as you know there is no cure but finding a management system that works for you l would definitely ask to be referred to a pain clinic and see if they can help. We all have similar problems but yours was acquired through cancer so it was a double whammy. I’m afraid you just have to get your vaccine jab ASAP and carry on. It’s miserable and debilitating and people just think your fat and eat too much but we know it’s an illness. Good luck getting help. I’m always here happy to listen and chat from someone who totally GETS IT 🙏🏻🤗

[Perce74 in reply to Canada91]

Thank you for your reply & really hope you find some form of pain relief soon x

[kHP22 in reply to Perce74]

I’ve had secondary bilateral leg Lymphoedema following cancer surgery for twenty seven years now and I have always had a level of pain with my Lymphoedema . I doubt very much if it’s related to the virus but I do know that if I’m under the weather my lymph nodes can sometimes be very tender but if it’s all over pain in your legs then it’s more likely to be your Lymphoedema I would have thought - I’m not an expert ( only as a patient lol ) Sometimes my pain is worse then others and it really depends on what I’m doing . If I’m on my legs for too long then it can be really painful . Sometimes it’s just a very deep constant ache whilst at other times it’s almost like a burning feeling , I suppose because the skin is so stretched now . . It’s never got to the point where I can’t stand it though because I take general painkillers and usually try to build in periods of rest . I was offered stronger pain killers at one point but As it was almost a daily occurrence I didn’t want to become dependent on them . It’s been much better since I’ve not been working as I can balance rest and doing things to my own convenience . I also have a recliner and make sure that I raise my legs as often as possible . I should say that I also have osteoarthritis and inflammatory arthritis and an artificial knee on my worst leg so pain has been pretty much a common thing for me for a lot of years . I’m sorry that you didn’t get much help at the clinic . I don’t think anyone really understands the practicalities or the feelings related to Lymphoedema unless they’ve suffered from it . The most frighting aspect for many patients us that we are constantly dealing with the unknown . Our body is so inter linked that we wonder whether it’s related to the damage to our lymphatic system or something else . Hope you get it under control . When I was working I had an assessment from access to work to assess my difficulties and I was given a special chair to sit in , a special rocking footrest so I could keep my lower legs moving and a footstool to rest my legs on during my breaks . That really helped .

[Perce74 in reply to kHP22]

Thank you for your reply, you are right people don't really understand.X