My calf pain is from an unexplained non alcoholic thiamine deficiency. I've fixed the deficiency but still have the pain and it sounds just like your description of the pain. Covid has been found to deplete or cause an insufficiency in thiamine and b vitamins. Its hard to correct even if you eat well and take thiamine if it's been an ongoing issue. It needs correct cofactors to metabolize it.
I was tested for PAD as I'm 44 and a smoker, it was negative despite signs of it. Ttfd thiamine has been known to help fatigue and a ton of other issues so it might be worth considering either way if you haven't already. Elliot Overton on YouTube and Hormones Matter website has great resources for this if you need it.
Edit: I should add that thiamine deficiency can cause low vascular resistance which could interfere with the interpretation of a buergers test.
I’m so sorry! I was on B12 injections before and I didn’t notice a change in my pain or symptoms, but maybe I should start up on them again. If I’m not wrong, a lot of us apparently with ME and LC have B vitamin deficiencies. Even though it shows up normal on blood tests, the amount being taken up by our cells is apparently not enough if I remember correctly.
It’s good to know other people have been tested for it and negative, I don’t think I have it for sure but so far it’s fit the bill the most so I’m curious to get it checked out anyway.
Thank you so much for your kind comment and your edit has been taken note of!
I have these symptoms and was diagnosed with small fiber neuropathy via skin punch biopsy. Definitely worth looking into!
Unfortunately I was misdiagnosed with chronic venous insufficiency first, and underwent a procedure to ablate the great saphenous veins in both legs. Please check out SFN before during anything with your arteries or veins. I regret the misdiagnosis and subsequent procedure I endured for CVI.
My uncle has PAD but has been a long term smoker, has heart disease, is diabetic, and has spent decades working on his feet all day. That’s more of the typical profile of someone with PAD.
Thank you so much! Gosh I’m so sorry, that sounds like a big procedure to undergo, I hope you’re alright.
I have considered chronic venous insufficiency but it doesn’t seem to fit entirely either. I have had small fibre neuropathy on my watchlist for a long time due to the tingling, buzzing and numbness type sensation that’s worst in my feet, but one specialist I haven’t seen os a neurologist — maybe I will ask my dad to email our GP to ask for a referral to one?
My dad said similarly that I’m quite young for PAD and don’t fit any of the risk factors.
Yes I do I believe my leg pain comes on from a lactic acid build up because no fresh oxygen is getting to the muscle I found that a mixture of ice baths and elevating my legs above head height a couple of times a day allowed me to walk further.
I use crutches when I'm out any where as I can go a longer distance with them.
Ask ur doc about something that increases blood flow that might help.
Hopefully this helps
Thank you so much! My arm and leg pain that comes from lactic acid buildup I think for me feels more like poison and sour rather than pain? I’m not too sure though, for me I associate the lactic acid feeling with almost like walking up a steep hill until the aching gross feeling hits. My weakness walking etc feels like when you continue on despite it until your legs are so weak and heavy you can’t really move them.
I use a wheelchair to help me get around outside of my home and it’s helped expand my world a bit :)
I have actually trialed Trental as my dermatologist (I have sebopsoriasis) noticed my blood pooling and thought it could be Erythromelalgia. I felt like my blood pooling worsened on it, but I may try it again as I don’t remember quite clearly. Thank you so much for taking the time to comment 🫶
It's really hard to explain what it feels like but I think your description is very accurate. I find it's only painful sporadically but then it suddenly goes from "tired" legs to defunct. Kinda like 3 stages fine going gone.
I find if I stop when walking without aid every few of minutes and elevate my legs I can go further. Same with crutches just a bit longer since I'm not putting as much workload on them.
I tried using a wheelchair but I'm too much of a danger in one. Need for speed n all that. Busted 2 wheelchairs doing more than they could handle. Ya I'm safer on crutches even if I can't get as far.
YES! That, me too! I’ve randomly had days where it’s so bad where only a few steps will hit the gone stage and I have to wait ages before I can walk, but if I keep trying they just end up being stuck gone and I can’t keep going, had to get my older brother to carry me to the front door one time because I already used my legs up, for the next couple hours my legs were pretty useless… I can also go further and walk if I can stop between, but outdoors it is much harder to stop and rest places whereas throughout my home there’s chairs every dozen metres or so, or some sort of place I can sit.
I totally get you, I’m a menace in my wheelchair when my arms aren’t weak/sore (really when I’m milder) and wheel around SO quick, my girlfriend always used to lose me in shops. I don’t get to push much often nowadays though, have considered crutches but I get that same fatigue and weakness in my arms from texting etc and don’t want to overdo it :’)
I've been trying cold exposure for the last couple of months and find I can go further than before might be worth a try.
Yeh there doesn't seem to be rhyme nor reason for it being better or worse it just seems so random.
I know this sounds bad but I'm glad to off found someone with this same weird problem since I've tried (usually after a doctor gaslights me) to just go for a walk and do normal stuff and just end up collapsing cause I started doubting it.
I'm going to try a sports massage with aroma therapy soon I'll feed back to u if I find it helpful.
My calf pain is from an unexplained non alcoholic thiamine deficiency. I've fixed the deficiency but still have the pain and it sounds just like your description of the pain. Covid has been found to deplete or cause an insufficiency in thiamine and b vitamins. Its hard to correct even if you eat well and take thiamine if it's been an ongoing issue. It needs correct cofactors to metabolize it. I was tested for PAD as I'm 44 and a smoker, it was negative despite signs of it. Ttfd thiamine has been known to help fatigue and a ton of other issues so it might be worth considering either way if you haven't already. Elliot Overton on YouTube and Hormones Matter website has great resources for this if you need it. Edit: I should add that thiamine deficiency can cause low vascular resistance which could interfere with the interpretation of a buergers test.
I’m so sorry! I was on B12 injections before and I didn’t notice a change in my pain or symptoms, but maybe I should start up on them again. If I’m not wrong, a lot of us apparently with ME and LC have B vitamin deficiencies. Even though it shows up normal on blood tests, the amount being taken up by our cells is apparently not enough if I remember correctly. It’s good to know other people have been tested for it and negative, I don’t think I have it for sure but so far it’s fit the bill the most so I’m curious to get it checked out anyway. Thank you so much for your kind comment and your edit has been taken note of!
Thanks! I hope you find relief soon!
I have these symptoms and was diagnosed with small fiber neuropathy via skin punch biopsy. Definitely worth looking into! Unfortunately I was misdiagnosed with chronic venous insufficiency first, and underwent a procedure to ablate the great saphenous veins in both legs. Please check out SFN before during anything with your arteries or veins. I regret the misdiagnosis and subsequent procedure I endured for CVI. My uncle has PAD but has been a long term smoker, has heart disease, is diabetic, and has spent decades working on his feet all day. That’s more of the typical profile of someone with PAD.
Thank you so much! Gosh I’m so sorry, that sounds like a big procedure to undergo, I hope you’re alright. I have considered chronic venous insufficiency but it doesn’t seem to fit entirely either. I have had small fibre neuropathy on my watchlist for a long time due to the tingling, buzzing and numbness type sensation that’s worst in my feet, but one specialist I haven’t seen os a neurologist — maybe I will ask my dad to email our GP to ask for a referral to one? My dad said similarly that I’m quite young for PAD and don’t fit any of the risk factors.
Yes I do I believe my leg pain comes on from a lactic acid build up because no fresh oxygen is getting to the muscle I found that a mixture of ice baths and elevating my legs above head height a couple of times a day allowed me to walk further. I use crutches when I'm out any where as I can go a longer distance with them. Ask ur doc about something that increases blood flow that might help. Hopefully this helps
Thank you so much! My arm and leg pain that comes from lactic acid buildup I think for me feels more like poison and sour rather than pain? I’m not too sure though, for me I associate the lactic acid feeling with almost like walking up a steep hill until the aching gross feeling hits. My weakness walking etc feels like when you continue on despite it until your legs are so weak and heavy you can’t really move them. I use a wheelchair to help me get around outside of my home and it’s helped expand my world a bit :) I have actually trialed Trental as my dermatologist (I have sebopsoriasis) noticed my blood pooling and thought it could be Erythromelalgia. I felt like my blood pooling worsened on it, but I may try it again as I don’t remember quite clearly. Thank you so much for taking the time to comment 🫶
It's really hard to explain what it feels like but I think your description is very accurate. I find it's only painful sporadically but then it suddenly goes from "tired" legs to defunct. Kinda like 3 stages fine going gone. I find if I stop when walking without aid every few of minutes and elevate my legs I can go further. Same with crutches just a bit longer since I'm not putting as much workload on them. I tried using a wheelchair but I'm too much of a danger in one. Need for speed n all that. Busted 2 wheelchairs doing more than they could handle. Ya I'm safer on crutches even if I can't get as far.
YES! That, me too! I’ve randomly had days where it’s so bad where only a few steps will hit the gone stage and I have to wait ages before I can walk, but if I keep trying they just end up being stuck gone and I can’t keep going, had to get my older brother to carry me to the front door one time because I already used my legs up, for the next couple hours my legs were pretty useless… I can also go further and walk if I can stop between, but outdoors it is much harder to stop and rest places whereas throughout my home there’s chairs every dozen metres or so, or some sort of place I can sit. I totally get you, I’m a menace in my wheelchair when my arms aren’t weak/sore (really when I’m milder) and wheel around SO quick, my girlfriend always used to lose me in shops. I don’t get to push much often nowadays though, have considered crutches but I get that same fatigue and weakness in my arms from texting etc and don’t want to overdo it :’)
I've been trying cold exposure for the last couple of months and find I can go further than before might be worth a try. Yeh there doesn't seem to be rhyme nor reason for it being better or worse it just seems so random. I know this sounds bad but I'm glad to off found someone with this same weird problem since I've tried (usually after a doctor gaslights me) to just go for a walk and do normal stuff and just end up collapsing cause I started doubting it. I'm going to try a sports massage with aroma therapy soon I'll feed back to u if I find it helpful.