Advice

[CraigDavidson]

Hi im new to this even though i was born with it . just curious to find out if people here with lymphedema in there legs suffer with pain heaviness burning sensation in there feet and just a general uncomfortable and sore walking

[Lynora]

Have you described these symptoms to your Lymphoedema clinic? Have you been checked out by a podiatrist?

[CraigDavidson in reply to Lynora]

Yes ive had a chat with my nurse who refered me straight back to my doctor who is now trying to work out what shes going to do and in the mean time im trying to gather more info

[Hidden]

Hi, yep i have all of the above and tingles like pins & needles.

[CraigDavidson in reply to Hidden]

Yeah i have those aswell how do you cope

[Hidden in reply to CraigDavidson]

It's not a matter of how, you just have to I also have rheumatoid arthritis from toes to my neck.

[wendyjames]

All of the above .my gp says its nerve pain on top of arthritis. arthritis is from overworked feet growing up with Lymphoedema .

[craftinglady in reply to wendyjames]

They know nothing --i have found more help on youTube than any doctor.

[CraigDavidson in reply to craftinglady]

I know that feeling but need to change career and won't get that until i see someone

[CraigDavidson]

I know the damage thats been done is my doing i was born with it tried finding out for years but didnt find out till recently but my career choice involved 13 hours a day in a hot environment running around all day

[Hidden in reply to CraigDavidson]

That doesn't sound very nice 13 hours a day.

[CraigDavidson in reply to Hidden]

My own fault life of a chef

[Hidden in reply to CraigDavidson]

Bet you eat nice tasty food tho lol

[CraigDavidson]

I did for a very long time but at 34 ive given it up and now waiting to get advice on what my legs will allow ke to do

[Hidden in reply to CraigDavidson]

Ahh what a shame tho, I couldn't do that job I get too hot making the tea lol

[Marjol80]

Hi I also have burning and pins and needles sensation in my foot, especially in the evening. Skin is changing colour into red then burning sensation for a while then stops.

[Trn20 in reply to Marjol80]

I read on the American National Lymphedema site that these symptoms are usually a sign of infection. You should get that checked out as you may need antibiotics. It also advised stopping current treatments for lymph i.e. compression stockings, lymph drain massssge etc until the underlying infection is treated. I hope this'll help

[trubags]

Gabapentin is your friend!

[patsy1702]

Pilates on reformer helped with all those sensations for me.

[CraigDavidson]

Yeah now stuck on Gabapentin and yeah i need to do something to help with fitness

[craftinglady]

I suffer the same as you and i have found it is worse every 12 hours. About 2pm until 4pm and the same 2 to 4 am .I wake up kicking and my legs are hot, I always have to get up and shower and after about 10 minutes the legs settle.

Cant remember the last night i slept all through thee night.

[CraigDavidson]

Sleep dont get much of that body wont stay rested enough for that lark and its all random some mornings i get to walk to school and back no probs then the next really struggle but all this is written down and next time ill be asking the questions

[Lynne-byn]

I have everything you've mentioned but still awaiting proper diagnosis

[CraigDavidson]

Youll probably be waiting a long time with doctors but ibhope they find out quickly

[CCT67]

I also have Primary LE in my feet and legs and have the same type of pain and symptoms you describe especially worsened by being on my feet for long periods of time. I was also diagnosed by the LE Clinic at St Georges Hospital London with Erythromelalgia, along side primary LE as I was complaining of intense burning and fiery hot skin that is often bright red when having heat flares

Erythomelalgia is a nerve disorder often exacerbated by the swelling from LE. The symptoms are very much as you and all the other people commenting that they having burning pain and hot and/or reddened skin - burning sensation and hot/red skin only alleviated by cool water is a cardinal sign of Erythomelalgia.

I have yet to encounter any doctor apart from the Lymphovascular Specialist at St Georges who has ever heard of Erythromelagia. None of the GPs at my practice had ever heard it. And the nurses at my local LE clinic had never heard of Erythromelalgia.

I was prescribed Gabapenten by the specialist who said sometimes it helps, sometimes it doesn't as it depends from person to person. I would say that it dampens the pain somewhat. However Gabapenten comes with nasty side affects after taking it for several months so I've cut my dose way back to 100mg/day instead of 1500mg. I'm in more pain taking less but the side effects of the higher dose were interfering with my cognitive functioning and coordination (common side affects of long term use).

The best way to alleviate pain from Lymphoedema and Erythromelalgia is elevation of legs. I elevate mine at very opportunity and at night. And doing daily MLD to drain the lymph fluid from my feet/legs. Living with these diseases it very difficult at times but I try to get on with life as best as I can just as so many of us are doing. Cat x

[Hidden in reply to CCT67]

I stopped taking gabapentin years ago as I thought it was giving me the swelling but now I no it wasn't it was the good old lymphoedema 😟

[barney22]

I get dreadfully sore hot painful legs when I take the stockings off. They have been a great help to me.

[CraigDavidson in reply to barney22]

Luckily i dont use stockings for some reason that's yet to be discovered in the last 4 years of visiting the nurse my left leg the worse one has stayed the same with or without the stocking but im in less pain with one but cant really use them as my feet end up burning in then moretuan usual

[peterwhitecrier]

Born with it but no discomfort except when I develop cellulitis

[caroline-din]

i have the same problem in my legs, always feel heavy and cannot walk bare foot as my feet hurt. also have problems getting up stairs in places. any advice