Legs on Fire!: Anyone else have legs... - My MSAA Community

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Legs on Fire!

CalfeeChick
CalfeeChickCommunityAmbassador
54 Replies

Anyone else have legs feeling as though they have the worst sunburn ever?? My legs and feet have gradually feeling more and more like they are on fire. Eucherin Calming Lotion after a warm bath or shower helps. Local Pharmacist says it is MS symptom. Right now my toes feel as though there are wires in them pulling them straight out! Aargh!

54 Replies
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Linda3579

I have that same feeling. It’s the worst at night when I am trying to sleep. I have another friend with MS that also suffers from hot legs and feet. I’m sorry you are dealing with this annoying symptom.

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kdali

Oh no! That is a symptom, and a terrible one to have 😞 Will you need to do steroids?

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to kdali

kdali Thank you. I have appt on tuesday. Have made a list already. How are you feeling?

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kdali
kdali
in reply to CalfeeChick

Ok! I hope it’s temporary 😵Pretty good most days! I injured myself 3 days in a row and dealing with that now 😞 but baby is fine!

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greaterexp
greaterexpCommunityAmbassador

It was no fun during the relapse, but now it’s back, mainly in the evenings and nights.

I’m so glad you found something that helps! Thanks for posting and sharing about this.

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jimeka

Oh Calfeechick, what a symptom to have. Have you tried Aloe Vera to help calm it down? Blessings Jimeka 🤗

3 likes
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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to jimeka

Thank you for the suggestion, I have a garden full of Aloe plants! I had some of the calming lotion from years ago and it sure helped😊🦋

4 likes
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erash
erash
in reply to jimeka

I tried aloe...no help for me

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Horse714

Yes especially when I get home from work after standing for 8 hours it feel like someone is using a blow torch on my feet and legs!!! Ouch 🔥🔥🔥🔥

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Redskinfan1977

Wow. I feel the same.

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Horse714

Do you take anything for it ?? Sorry it’s happening to you to.

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Redskinfan1977

The docs have tried all kinds of pain meds and nothing helps. Keeps me up at night crying. I will try some calming lotion or aloe.

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victory37

Yes, I've had that problem in my legs and feet for years, especially in the evening. I'm on Lyrica, but honestly, it barely takes the edge off. Lately I've been thinking more and more about CBD oil. I pray that you'll be able to manage this symptom and get relief soon! God bless 🙏

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erash

I have that. Some days better, some worse. Very distracting. My neuro calls dysesthesia. He offered lyrics or gabapentin. I hate the side effects of those meds. Lyrica made me a zombie. I tried a compounded topical. Too strong and also made me a zombie. I tried spray on magnesium. No help. Cold seems to be a trigger so I wear stick on toe warmers at home when I can. What are u using? Eucerin or Eucharin calming?

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erash
erash
in reply to erash

Oh, it feels like frost bite but it is a burning feeling. Was mainly feet. Now at least up to knees on bad days.

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to erash

Eucerin Calming- I used to massage my knee replacement years ago. It helps! Last year a neuropsychologist recommended "Ancient Minerals" from Amazon. I bought all three, the nighttime one has a little Melatonin in it and it helps but would become expensive if I used it every night.

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erash
erash
in reply to CalfeeChick

Was ancient minerals more effective than the eucerin calming?

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Horse714

the only thing that helps me in 1mg of Xanax at night it really alleviates the pain by morning about 3/4 to all of it is gone.

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JCarl
JCarl
in reply to Horse714

I've found nothing that helps. Was on Xanax for several years, but neuro insisted I get off it, due to the potential of brain damage. Was glad to get off it, but many sleepless nights

1 like
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Horse714
Horse714
in reply to JCarl

I’ve been on it for 20 years the only thing that’s causing brain damage is the m.s.

1 like
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JCarl
JCarl
in reply to Horse714

Interesting. I did sleep better when on it.

When neuro took me off she put me on something else which did not help at all. Now I have nothing.

Going to try some meditation

1 like
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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to JCarl

I'm rotating Eucerin Calming creme and using fresh aloe from my garden😊👍

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Juleigh21

I take 600 mg of gabapentin at bedtime. I can’t sleep without it anymore. My body, especially my legs, feel electrified w/o it. I’d love to get off it.

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to Juleigh21

Electrified is a great description of the feeling!

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to Juleigh21

Juleigh21 I already take 10 -200mg throughout the day. I did up it in the evening for a couple of nights. It helped. I just wonder what all these drugs are doing to our systems???....

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Juleigh21

I wonder what all these drugs are doing to us. Ocrevus, solumedrol, Benadryl, gabapentin, carbamazepine, Tizanidine, baclofen, Plaqnil, and Valium, I take these to control all my MS symptoms when they’re present in my body. Not all at once mind you😆. I sometimes think -we’re robbing Peter to pay Paul. But pain is pain😬.

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KerryOkie

I haven't had the sunburn feeling but I've had other weird phantom stuff like my knees feeling like you felt as a kid when you fell and skinned your knees on asphalt or concrete. Haven't had that in a while. It just hits out of the blue sometimes. I broke a toe when I was 25 years old, and 30 years later I started waking up in the middle in of the night in horrendous feeling like I had just broken it again. The doc prescribed neurontin (gabapentin) at bedtime and that stopped it. Late in the day every day, and anytime I've been sitting for an hour give or take, my lower legs and feet get weird painful sensations and I have to stand up and move for a bit to make it stop.

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MarkUpnorth

I've had the evening burning feet thing at night for many, many, many very long years. I've had neurologists and other doctors try for years, everything in their war chests. Nothing. You can try passing out from brandy, not recommended, but when you live on very little sleep, for many years due to the pain, it works consuming very little. A few shots with no sleep all night, you will sleep. OR, you could try vaping (No. Not killer cartridges or other concoctions, but simply high CBD cannabis or hemp flower. My favorite is a strain called AC/DC, which is a 20:1 CBD:THC strain, available from hemp, even mail order as it must meet Fed guidelines? What I got mail order, came with lab reports, but a dispensary if you have them would be best. I believe they assure it organically grown too. Vaping effects are immediate, gets you to sleep, without the charred burnt feet and sheets to wake up to! Just kidding, but I swear I thought I woke up to that for years pre high cbd cannabis days, or was it the other failed scripts?

Now, if I can't vape for whatever reason, traveling....yep, I'm in for no sleep and the smell of burnt flesh and charred sheets. Brandy then has to get me thru it. I bring my own sheets so as not to get charged for burnt sheets traveling. Joking.

Vaping flower was recommended to me by my neuro. Been doing so now for years. No side effects with the high CBD strains.

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Horse714

Thanks for the info.

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to MarkUpnorth

My Hubby vapes the safe stuff, and smoke his friend's home grown. He has really bad glaucoma in both eyes.

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chairbear

YES! I'm sorry you're having to experience neuropathy to that degree, it really sucks! I too have he same problem - THC drops and/or LBN5 from EB Medical really helps!

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Horse714
Horse714
in reply to chairbear

Where do I go to get this??

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CloverPrincess

I’m so sorry! I hope you feel better <3

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Lovingharmoney

The tops of my feet will feel like they are on fire but the soles feel like I'm walking on broken glass. Painful when it's like that.

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Amore55

I have the same problem. The only thing that helps me sleep, as it is bad at night, is something I found at Walgreens Pharmacy. It is cbd cream the brand name is Sagely. I have tried so many things, but this works! Good luck, feel better. Love, Kelly xx

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ZoomJoeT
ZoomJoeT
in reply to Amore55

Thank you for noting the name of the product that works for you. I've been with the burning legs for about 2 years, and it doesn't seem to get any better (as concerns my welfare). I will get the Sagely tomorrow. Hope it works for me, too. Thanks.

1 like
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Amore55
Amore55
in reply to ZoomJoeT

Just want to prepare you...it is pricey, what isn’t these days? I paid about $40 for a 4 ounce pump. The muscle rub was a bit less if I remember correctly. I think that brand name is Select. Works great too. I only use a teeny bit so the cream lasts quite a while. Please let me know what happens! Love, Kelly xx

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to ZoomJoeT

Let us know how it goes ZoomJoeT

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Jds1945

my problem is my butt is on fire when i sit. quite uncomfortable to say the least as you sit quite a lot. in my experience at night my legs can feel like a block of pain right through the whole leg. if that happens i switch to the other side and eventually it will happen to that leg. it used to happen quite a bit but thankfully not as much now. i am in secondary progressive so things just pop up just a little bit worse. good luck to you.

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pamgarner

my doc recently put me on Cylebrex..(Spelling). for the pins and needles and burning.It also has a tiny bit of anti depressant,I also take another anti depressant,any how this has been working great for me

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pamgarner
pamgarner
in reply to pamgarner

oh my goodness! I told you wrong med,dr put me on cymbalta NOT cylebrex.so sorry.DUHHH!!!

1 like
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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to pamgarner

I've been taking Celebrex almost 20 years for aggressive OA. Helps me so much!

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Raingrrl

I have a burning sensation from my knees to my feet from neuropathy. I’ve had it for years. I take gabapentin for it. That helps more or less depending on the day. I’ve tried acupuncture for it too. That helped also. Unfortunately it’s expensive so I stopped going for awhile.

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4fishylady

OK, I've had the hot, hot, hot burning feet for several years, like walking on hot concrete or beach sand. It is worse at night, after I've been on my feet a lot. I find some relief by walking on cold floors or using a wet wash cloth to set my feet on will cool them down some. But at bedtime, I take 300 mg gabapentin, and sometimes 1/2 of a xanax to ease me off to sleep. I have used Gold Bond lotion with the cooling menthol to help, also Aspercreme sometimes helps back it off. Then at bedtime, I stick them out from under the bed covers when I can't stand for them to be covered. That helps back it off til I can get to sleep. I am so sorry that you have it on your legs too. That is awful. It was good to hear from so many with different options for us all to try. We need all the help we can get!

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carolek572

I hope that you are feeling better today, CalfeeChick There are many good suggestions, I cannot offer more as I haven't had this symptom ~ yet. I hope to remember all of this if and when I do get burning legs/feet. My problem is quite the opposite ~ freezing/frozen legs and feet! :-D

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JCarl

Yes, for over 25 years now. Nothig gives relief.

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LissaH

I get it in my feet. When it first happened I thought I was standing in hot water. The funny thing was I had my shoes on and there was no water anywhere around me. I kept looking as if there was some there, but nothing. Then it would happen when I would be sitting up on my bed, but once again I would look at my feet as if i was standing on a heated floor. How can that be when I'm sitting watching tv on my bed. It is freaky. It happens often so I'm used to it now and wait for it to pass.

I hate when I feel like something is crawling on me and nothing is there. That makes me feel creepy and look crazy because I looking for bugs and swatting at nothing. Ughh. Haha. I just laugh at myself when I realize I'm having one of those creepy feely moments

Hope you feel better.

Everyone have a blessed, save day.

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CraigS

My legs don’t necessarily feel on fire and I rarely know where they are. However, when I touch them, they feel pain. Also, the skin feels very tight, like it might split open at any time. (Very weird). I’m amazed at the total disconnect from brain to legs until I touch them.

Such a fun disease!

1 like
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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to CraigS

The last few days my left leg has been one big Charlie horse spasm, ball of foot is numb, toes feel as though there’s wires in them pulling than straight out! Lotions help, can’t wait for new med to get here!

1 like
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CraigS
CraigS
in reply to CalfeeChick

What meds are you expecting?

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to CraigS

Instead of Amitriptyline 25mg. up to 3 per night---- chg'd to nortriptyline. (pamelor) I haven't even researched it yet. The first one helped the legs, but made have bad dreams and I'd walk around the house in the middle of the night. I'd ask for my mom and she passed away in 1990!

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CraigS

I’ve had several drugs that made me have bad dreams and become very forgetful. Scary! I’m using Pramipexle (Mirapex) or Colozipan (sp) to quell the spasms. I have to switch back and forth as the drugs quit being effective. Of course, there’s always a nice glass of Scotch before bed to take the chill off if needed. I remember that Lyrica was especially dream inducing and such weird ones too!

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CalfeeChick
CalfeeChickCommunityAmbassador
in reply to CraigS

I took just 2 of the amitriptyline last night & hubby said I kicked the crap out of him and the kitty. I’m willing to sleep in recliner but he says he’d be up all night checking on me. Oh the joys of MS!

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Redskinfan1977

This happened to me as well, but I have a dog.

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