Does anyone else have freezing cold legs all the time? They are so cold from my knees down, they almost feel wet but they're not. I walk

[Trulyfedup]

around with hot water bottles on my legs all the time. They are even cold to the touch. Could it be bad circulation? R/A in my knees quite bad. Mary

[Tillytop]

I've had this before and I really feel for you because it is truly horrible I know. My legs weren't particularly cold to touch but the sensation was of having my feet and lower legs plunged into a bucket of iced water. It was verging on painful and nothing helped. Like you, I used hot water bottles but I couldn't even feel the warmth against my skin, even when they were really hot, so they didn't help much. Mine was not continuous like yours so would happen for a few days then go again and it has pretty much gone now, apart from very occasionally. I suspected that my problem was peripheral neuropathy caused by one of the meds I was taking at the time but I never did get any proper answers. I do think it would be a good idea to mention this to the doctor though - GP or rheumatologist because there are nerve conduction tests that can be done - and probably other tests too - to try to establish the cause. I really hope you do find an answer soon.

Tillyx

[Trulyfedup in reply to Tillytop]

Thank you...mine is just like you explained!!!!! It's horrible, I do believe I've got slight nerve problems in legs that's why I was put on gababentine...I had to be taken off that though due to side effects. I literally feel as if I'm standing in a cold lake and my feet are like ice and yet my face is burning and I'm dripping wet. I've got burn marks on my legs with me having hotter and hotter water bottles...I'm glad you are free of it at the moment...fingers crossed so will I soon because it really is very nasty...take care maryx

[TeamUp in reply to Tillytop]

Hi, I have had this ice cold sensation in my legs. It is terrible. I never get a specific answer. I wondered if you ever got a diagnosis since this was posted 3 years ago. I had a lumbar back fusion and I suffer for chronic pain that is in my back, legs and feet, but this ice cold sensation is so unusual to me. I've just been told I have root nerve damage.??????

[Tillytop]

Oh Mary that sounds absolutely horrible and much worse than mine was. It does sound as if you might really benefit from a proper neurological assessment to try to find out what is causing your problems. Do you think the doc would prescribe an alternative nerve medicine to see if that gave you some relief? I take Amitriptilyne (?spelling) for nerve pain from my spine and I was told that alternatives were available in the form of either Gabapentin or PreGabalin, so maybe you would be able to try something other than the Gabapentin. I really do hope you get some help soon. I also used to have burning face and be dripping wet but, in my case, it didn't seem to be connected to the thing with my legs - or maybe it was and I just didn't make the connection.

Thinking of you.

Tillyx

[Trulyfedup in reply to Tillytop]

That sounds just like me..did you ever find out what yours was?

[Tillytop in reply to Trulyfedup]

Hello again - I didn't ever get to the bottom of it unfortunately though given that it only appears very infrequently now I suspect it was a side effect of one of the meds which I no longer take. I really do hope you can find out what's causing yours and get some help for it.

Tillyx

[Trulyfedup in reply to Tillytop]

Thank you..I shall ask my doctor at the weekend to really investigate it...it's quite bad at moment I'm on my bed with two hot water bottles at burning heat on my legs and a blanket wrapped around my legs to try and warm them up...thank you very much for your reply and help.. Wishing you well..maryx

[Hidden]

Hello BOB here

Have cold feet think it must be bad circulation

All the best

BOB

[francherry]

Hello, I have cold lower legs and feet too. However, I had this before being diagnosed with RA and thought it was down to poor circulation as I also have cold hands. I use hot water bottles as well. Definitely worth mentioning to your GP - good luck.

[Lynn27]

Put socks on, heat wheat bags better for heat won't burn skin. Wishing you some relief soon

[minka]

Think i can help you with this one its called Vasculitis .

and its when the immune system goes wrong sometimes the ra can attack the blood carrying vessels outer casing of the vein

this in turn is well its just inflamation realy of the outer wall which then shuts some of the blood supply down to the feel or legs it can also happen in the hands etc Can also be mistaken for Raynaud's or lack of oxegen in the blood supply.

Now you might want to have ultrasound blood flow test through your legs

this is when they test the flow but also shut down the blood supply with a clamp and then release it

this tells the operator how well the blood supply get running again

they may also give you a calf and ankle exersise on doing this and test the flow.

Most important IF YOU HAVE THIS TEST AND THEY DONT DO THE SHUT BLOOD SUPPLY AND EXERSISE you have not been treated correctly and belive me i know cos its took me over 12 months to get diagnosed and the first one i whent to was playing at it compared to my new rumi woman. (i love that woman)

dont be supprised if blood flow is normal !!!! it can still be this

You may also find the feet and legs get back to normal sometimes when your not thinking about it or distracted.

My previous doc said wear warm socks WELL IT DOSNT BLEEDING WORK THAT WAY so much for the normal doc in the street.

hope this helps not posted for a bit now regards john

[Trulyfedup in reply to minka]

Thank you so much, it does seem to fit in with it all...I'm going to mention it to my GP on Saturday...thank you very much I thought I was going mad! Maryx

[minka in reply to Trulyfedup]

and dont forget if ya go for the check up mention what ive said above about not just doing an ultrasound on the veins cos thats no good to you in repect because you could be having a good day sods law that its ok when you go

ps mine where going septic on me big toes they where that cold

[allanah in reply to minka]

ye Minka Mate! where have you been, see we need you here to answer these questions on which you are the expert! Glad to see you back.

[minka in reply to allanah]

im no expert allanah just know some things they dont do and should do for people

[minka]

hi scouser how ya doing ok i hope im cooking on gas at moment so its like make every day count with these tablets she has given me i wont say i dont get a bit of the old pain but better than it was got lupus and vasculitus but feet getting much better now one thing i doknow now dont let these surgions go in to anything in ya body GO TO VETS INSTEAD lol unless ya find a good un who belives ya can have a conversetion with someone with a racked body xx

[allanah]

Sorry Truly have no real experience of this but hope you are ok today and get to grips with any diagnosis. Ax

[rugged]

This sounds exactly like what I have.

I wonder whether you ever had any surgery in the past?

Also, you wrote that your face is burning. How about your pelvic area? Mine is on fire for some odd reason.

[HarryGeorgiou]

I think I got this on a mild case but as far back as I can remember in my teens, although in the winter mainly don't remember getting this when the whether was warm. My feet would always feel cold. One thing regarding feet I found was that my socks would get moist and wet, so while thermal or special breathing socks were worn, they would saturate and get cold. Slippers would have the same effect and I would end up with cold feet. I find walking up and down helps, at this moment in time I am sitting at the desk and have the radiator between my legs. It seems though that is just about giving me comfort while this is not the safest option so be careful. Plus it would use up a lot of electricity.

In a car , I would feel cold and ask them to blow hot air where my feet were, in my shoes this would help but the problem was it would take time as most people don't want you to take off your shoes when your feet are a bit moist. Then there is the hassle of having to try to put them back on. I find standing around for a while causes this too if the floor is cold and you don't have much insulation. Most of the time before I go to bed at night my feet are really cold, Thank God I wake up with warm legs and feet but I don't sleep until my feet are warm enough and i place part of my warm feet on my cold feet. But you all sound like you have it to a higher intensity.

[HarryGeorgiou in reply to HarryGeorgiou]

I am almost 32 now and have noticed it from my mid-late teens, I was not the most active but felt this often and still do.

[Joan60]

I have the same problem it started today I can't seem to warm them up people say it's poor circulation does anybody know how to help it from my foot to knee it's just in the one leg help 

[minka]

this can be bad circulation the thing to watch for is that they dont go cold in your feet like go hot then back to cold

ra causes the blood vessel to shrink down due to inflamation do you get like feel like running water down your legs,

[Tas60]

Hi Tillytop. I am a 60 yr. old man. I have had peripheral neuropathy for 17 years. I have had every test under the moon. I have been on fistfuls of meds too. I don't know if we have the same thing but lyrica and Advil has helped. I take 150 mg. twice a day but also get leg cramps which is a side effect. I also have pain. And sorry to say I am also on pain meds. I try to take as little as possible. But on bad days I will tell you what has helped. One walk. I don't know why but it helps, At night I rub my legs once or twice till they start to feel better. I use lotion and when they get real bad I use aspercreme with lidocaine .My hands have the same issues so I always wear a pair of leather gloves this gives me my hands back. But After years of wearing gloves. I bought a pair of leather moccasins . I don't know why but leather works when I can't sleep. Neurologists have told me what I have but not how to fix it. Most Dr. Will just give you meds, but most don't make a difference for me. At times they say it's from diabetes, alcoholism, or just things in life. For me I'm sorry to say there is no cure. But you're starting off the right way. Research and ask questions. Be careful of some Dr. and meds. At one point I had a nurse practitioner that kept upping my meds. I finally got toxic and was in a coma for two months. I don't want to scare you but knowledge will be a life saver. Good luck ask your Dr. If anybody in your area is doing any study's . Be patient and open minded. It's a hell of life style. I hope you get blessed in the end..

[Spatch]

I have the exact same thing which started in San Diego Jan 2017. I live in Naples Florida and wear leggings when it's 90 degrees out. It's not all the time, some supplements may be helping and sometimes a baby aspirin hrlps. Just bought a Bemer (look up Be,we thry on YouTube) which is to help blood flow through the miles of micro capularies in my body. It had helped with other things but not my legs yet. It has stopped my RLS and I am sleeping better. I am hoping in time it will stop these obnoxious symptoms. I have had chronic sciatica since 2006 from herniated discs and feel I best start walking more even though just changing shoes causes more pain. My biggest mistake is likely not continuing to watch. Maybe a mini tramp will help get lymphatic system working as well Good Luck all.

[Abdorleh17]

I have this same problem 8 month ago but I noticed it always increases when I drink beer or smoke, or eat food with to much salt, then first I stop eating any kind of salty food and stop drinking beer, then I started feeling better but at that time I still smoke, when I finally stop smoking I feel more better, some of the drugs I was taking never help in any way. Sometimes it make it more worse , one doctor also tells me to stop stressing my legs but I can take some little walk and get enough rest, I still feel it but it's not like before and I hope it will stop in main time after stop drinking and smoking and not wasting to much of salty food.

[Mico2020]

Yes I have that issue every time I go in where there's ac. Mine feel as if I'm in a bucket full of ice water up to my knees & if u have ever been in ice water after a while it feels like pins & needles, painful. I lost the use of my legs due to MS and have been wheelchair bound for years now. Sitting I'm sure has a great deal to do with mine and as an added bonus my rear is in constant pain no matter how often I shift positions or swap cushions out. So I use hot packs and rub the areas that are freezing or use socks straight out of the dryer. I hope u find peace of mind if not total relief with your issue. Good luck

[KittyJ in reply to Mico2020]

Mico this post is 7 years old , just so you know, in case you don’t get a reply😊