I have bilateral primary lymphedema since about 10 years old. Have had swollen and painful feet my whole life. Past five years I've had not just swollen and painful feet, they often feel like they are on fire. Not just feeling hot; they also feel like they are burning. I also get a shooting pain in my feet and legs.
So far the only thing I do is get up and walk around; rub them; wash them and apply cream and wrap them up again. Sometimes I take Gabapentin; which helps but makes me constantly fall asleep.
Do you have this? What helps for you?
Thank you for your advice. It's really hard to sleep when you suddenly jump up out of bed because of the burning pain in your feet.
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BADFoote
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Hi there, I do sympathize with you. I was born with primary bilateral lower leg lymphoedema nearly 80 years ago. My feet and legs are exactly the same as yours and in real terms, nothing seems to make things better other than wearing compression hosiery. However, there are times when my legs and feet are so sensitive, I have to leave off wearing them. I keep my skin super clean and well moisturised and always sit with my legs elevated when sitting down. Sorry can't be more helpful, but do take care. x
Actually, that does help. Just knowing I'm not the only one with this weird burning helps. I make it through work, then have to go home and get my feet up. But even with them elevated, they still burn. Thank you for your comment.
My feet and lower legs are actually burning/hot just now, and this is the time of year that I suffer less!? As you say nothing really makes it go away, it just takes time to calm down. But do take care of your feet/nails. I go to a chiropodist monthly to have my nails cut and hard skin removed - have done for decades! I also use loads of Double Base Gel to moisturize, but I decant it into smaller containers and add essential oils, i.e. lavender, frankincense, rose, etc. I have found over time this is the best for my particular skin and the nursers at my lymphoedema clinic always comment on how good my skin is. Take care,x
Are your feet red/pink when burning? Does the burning subside if you put them under cool water and start burning again after you remove them from the cool water? If yes then you likely have Erythromelalgia. If no then you have neurovascular pain which is quite common for those with lower limb primary LE
Based on tour symptoms it sounds like you have neuropathic issues that could be exacerbated by the LE ie swelling puts pressure on your nerves setting them off = pain.
Elevation helps but obviously one can’t elevate all day and night! I’ve found CBD oil is much more effective than Gabapenten for pain relief for nerve pain and CBD doesn’t have any side effects like Gaba does. I had a dreadful experience with Gaba after 6 months on it, i won’t ever touch it again.
CBD - I like Biobloom and Biopurus (not high street brands which are overpriced and underperform).
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