sunburned in Seattle

[normwithms]

Hello All, I thought I would ask the experts first before I waste my time with a Dr. I have been being wakened up at about midnight each night because my legs from the knee down feel like I have a third degree sunburn on them. I can get back to sleep sometimes if walk around or rub them but if I cover them with the blanket the burn comes back worse then before. This is a new one on me. Has anyone solved this one yet?

[Jesmcd2 CommunityAmbassador]

NORMMM!!! sry couldn't resist Experts hahaha to funny.

OK seriously no haven't had that unless lm having an MS hot flash. And then lm to hot for covers. Hopefully someone has answers for you.

[normwithms in reply to Jesmcd2]

Hello jesmcd2 I do live near Seattle, so I can keep my house at about 62 degrees most of the time. I still can only use very light cotton blankets

[Ashirva in reply to Jesmcd2]

Cheers fan? LOL! Me too!

Is there really such a thing as an MS hot flash? I'm still having hot flashes, even though I'm well beyond menopause. I'm supposed to be seeing an endocrinologist next month about it, but if it's the MS, there's probably not much they'll be able to do about it, right?

Are we having fun yet?????

Anne

[bavery207 in reply to Ashirva]

So, is there really such a thing as an MS hot flash? I'm in my 14th yr. of hot flashes and would be curious.

[bavery207 in reply to Ashirva]

Please let us know what the endocrinologist has to say.

[jimeka]

Sensible thing to do Norm, somebody on here will be able to help you I am sure. I get woken up with my right ankle, so hot some nights and very painful. I have to kick the covers off and wait for it to cool down. I just put it down to another ms trick being played. Hope you get the answers you are looking for. Maybe if it feels like sunburn, maybe try after sun cream, see if it takes the heat out. Just a suggestion, cheers Jimeka

[normwithms in reply to jimeka]

Thank you. I have used Aloe Vera for the burning feet, it seems to work for me. I have used sunburn cream on my feet and that works to on my feet as well but it does not seem to work on the legs.

[erash in reply to normwithms]

Normwithms wanted to thank you. I tried the aloe and it does help. Not 100% but vast improvement. 👍

[normwithms in reply to erash]

erash I agree, it is not a 100%. I sometimes have to take gabapentin or aspirin if I don't catch it fast enough. There are time where nothing works except a hot shower, a scrub with a hard brush and a walk on a cold floor.

[CynthiaS in reply to normwithms]

Wow....hot shower??? I wish. Lukewarm is all my ms will allow or jello legs and off to bed for a the day. I use to love saunas and sweat lodges. Cotton sheets and they get kicked off a couple times a night. Hope you are doing well. Blessings Cynthia

[normwithms in reply to CynthiaS]

Hi CynthiaS I think the hot showers work because it hurts so bad at the time, when I stop the cold floor feels so good. A new thing I found helps is, we have 2 little granddaughters so we have a lot of baby wipes. I have been able to use the baby wipes to cool my legs and feet.

[CynthiaS in reply to normwithms]

Right on!! I have two granddaughters also..Congratulations! Glad you are getting relief

[CalfeeChick CommunityAmbassador]

I have a similar problem with my legs, but not so severe and it's 24 hrs a day. Anything touching my legs and feet, clothes, sheet, nightgown produces a sensation like static electricity. I massage with Eucherin "calming cream" and get a little relief. My feet change feelings all the time. I can be laying in bed and they go from feeling encased in ice, to tingling with lead weights across the heal and ball of the foot, on and on.

Sure hope you get some relief, Lynn

[normwithms in reply to CalfeeChick]

Thank you. I will try the Eucherin. I have had good luck using Aloe Vera on my feet when they burn and freeze when I have shoes on.

[CalfeeChick CommunityAmbassador in reply to normwithms]

Thank you! I started using it 2 yrs ago with a knee replacement.. side benefit is that it also helped arthritis in my hands.

[jimeka in reply to CalfeeChick]

You have a knee replacement and have I remembered rightly that you biked all those miles?

[CalfeeChick CommunityAmbassador in reply to jimeka]

As said, I was very active 68 yr old. On bike 9 weeks after TKR. Had L4-5 fusion in 2011. Swam laps when I wasn't cycling. I've done some swimming since diagnosis, fatigue slows me and talks me out of activities. ☹️️🚲

[jimeka in reply to CalfeeChick]

Wow, you have done well. It is really hard accepting what you really enjoyed, how quickly it is taken away from you. You have to keep smiling though.

[CynthiaS in reply to normwithms]

Try putting aloe Vera in the refrigerator!!

[erash]

I have severe neuropathy. Feels like my feet to my knees are sunburned or frost bitten or like someone is scraping them with an emery board. It's more severe some days, less others. Better if I move around or keep them warm: leg warmers, ski socks, toe warmers (the kind used for camping). There are meds for this (Lyrica, gabapentin etc.) but the side effects make me feel too drugged. Of course all are different in their response to meds. I do use magnesium and b12 and NAC.

[normwithms in reply to erash]

Hello erash I must have the same thing as you because you described exactly what it feels like. The doc gave me Gabapentin it didn't work. I found that aloe rubbed on feet and going bare foot or Velcro style sandals, even when it is cold, stopped the burn. I am still working on the legs though.

[erash in reply to normwithms]

Aloe in a prepared cream of some sort? I'm certainly willing to try something with no appreciable side effects. Thank you !

[normwithms in reply to erash]

I have been using straight Aloe Vera it is cheaper. It seems to build up a coating when it dries. Good luck

[erash in reply to normwithms]

Added it to my shopping list. Thank you

[Ashirva]

NORM! (Sorry, I couldn't help myself either!)

Get thee to a doctor!!! Listen to everything he says, check it all out online, believe half of it and, finally, do or take what makes the most sense, feels right or works!

Good luck! Let us know what works for you!

Anne

[Jesmcd2 CommunityAmbassador]

Hey normwithms l agree with Anne get it cked out. There might be something as simple as Lyrica to help you or at least give some relief for you. It's funny that you mentioned the aloe because you never mentioned putting it on your legs. Give it a shot see if it helps

But ask your Dr

[WAshingtongirl]

Hi, Norm from Seattle! Hard to get a suntan with all the rain we've been getting lately. I'm on the Olympic Peninsula, just a ferry ride away! I see Dr Virginia Simnad at the Evergreen MS Clinic in Kirkland. Love her! She has treated my 'raw, feels like a bad sunburn' or 'so sensitive even a light touch' skin with gabapentin. The newest one: feels like someone has peeped the skin off my arm. At least we don't get bored with MS. 😉 I take 1800mg gabapentin a day and it cuts down on most of my sensory issues. I also have been getting a beet red face-hot to the touch-but it doesn't feel like a menopause hot flash. Lasts for hours and I sometimes wake up the next morning with 'stained' pink cheeks before it completely fades away. Not rosacea, blood pressure, caffeine, etc. I never need to wear blush again. Ha! She suspects autonomic system involvement. Let's just say my thermometer is broken. 😉 I hope you get relief and that your doc has some answers for you. Go Hawks!!!🏈

[erash in reply to WAshingtongirl]

Tutu, I have a patient with MS with the same red cheeked phenomenon. She has an autonomic dysfunction and cant regulate her temperature well, always feels cold. She had been diagnosed (but not treated) for Rosacea. Makes me wonder if she had been incorrectly diagnosed.

[WAshingtongirl in reply to erash]

Very interesting, Erash. I tend to have heat-related issues, though my feet have always been miserably cold, even with heavy wool socks and 'warm' shoes. I notice less tolerance between temperature extremes either way recently. Perhaps age is a factor? But yes, with bowel, bladder, and vertigo due to blood pressure drops, I have confirmed autonomic system involvement. Never heard of anyone else with the red-cheek phenomen. Thanks!

[normwithms in reply to WAshingtongirl]

Hello Tutu I can't believe you cross the sound to go to Kirkland. We have the same Dr. Dr. Simnad is very good. I am just a very bad patient. She gave me Gabapentin but it makes me sleepy so I don't take it until night time, I still have to work. It has never seemed to help with the burning foot or leg problem. I have been weaning myself off of them. Aspirin seems to work better for me. I to have a broken thermometer, only I can not tolerate any temperature over 65. I seem to have solved the problem thanks to all of you. It was as simple as not covering my bare legs with the blanket when I go to sleep.

[WAshingtongirl in reply to normwithms]

Really? You see Dr. Simnad too? What a small world! I'm happy you've found that aspirin and no sheets work for you. My poor husband walks around our house with his jacket and hat on sometimes because I keep turning the thermostat down.

[Hidden]

Hi Norm - I have the typical neuropathy in my lower legs at times which is a burning, heavy sensation. But then I also get other weird phantom sensations. Like sometimes the skin on one or both of my knees starts hurting, and the sensation is like when you would fall down on pavement when you were a kid and skin your knees. When I was 25 I broke the 4th toe on my right foot when I ran into a piece of furniture and it was a bad break. Sometimes you hit your toe on something and think - "I wonder if it's broken" - I'm here to tell you, when you break your toe you'll know it. Thirty years later I started getting awakened in the middle of the night with pain in that toe like I had just slammed it into that furniture again. My doctor ordered a dose of neurontin (generic name - gabapentin, which is for nerve related pain) to take at bedtime and that stops it. I have to be careful the dose I take. He prescribed 600mg at bedtime, but I break that in half and it still works. If I take 600mg I find that the next morning my walking is much wobblier. Of course it wears off as the medicine gets out of my system but I try not to go into work looking drunk. It's all a balancing act. But for me the neurontin works well for the neuropathy as well as the bizarre phantom pains that pop up.

[WAshingtongirl in reply to Hidden]

Great description, re: skinning your knees, KerryOkie. I've had that too. Now I know how to explain/describe that sensation.

[Hidden]

Hello normwithMS this is MSFIGHTER responding back to you about your hot legs. I do not believe we have spoken before so I wanted to say hello. Sometimes the easiest explanation of the ones we overlook first. Trying not to get personal here but what type of mattress do you sleep on? We have an older memory foam king size wonderful bed that I can no longer sleep upon. It seems the older type memory foam mattresses keep and build up heat from your body. I too never make it sleeping through the night on that mattress. I am normally awake and burning up by somewhere between 1 and 2 a.m. A lot of people with MS are very heat sensitive. The second question I have is have you ever been diagnosed for restless leg syndrome? I have that also and if I forget to take my medicine in the evening there is no way I'm getting to sleep when I go to bed. My legs start hurting, jumping about, twitching and bother me to death in general. It was just a thought but it's worth looking into unless you already have. Good luck figuring out your restless sleep issues. Make sure you figure out what's causing you to be awake at night. With MS we need to make sure we all get our rest. Without proper sleep we stress our bodies more than we realize. We all know that stress is a leading cause to allow our MS to terrorize us even more. It's kind of like MS opens up some back doors and allows stress to get in and do more damage to our bodies. Make sure if the suggestions of this chat room that are simple to follow don't work for you need to contact back your doctors and see what kind of input and suggestions they might have. Your doctors are still your best source of information to resolve mysterious problems you run into. Do not let them brush you off. After all they work for you. And Norm nobody knows your body and your current symptoms and issues like you do. Please keep us informed of what's going on with your legs and how it is resolved. Remember together we are stronger!

[Hidden in reply to Hidden]

Normwithms, the drug that is prescribed to treat Restless Leg Syndrome is Mirapex or a generic alternative for it. I thought you might want to know if you speak to others on this site or speak to your doctor about possibly trying it to see if it helps. Cheers, hope you had a great weekend, and please keep us informed about your journey of resolving your hot leg syndrome! MSFIGHTER.

[jimeka in reply to Hidden]

Hi MSfighter, I didn't realise you had RLS as well, my neurologist says that they go hand in hand. I have been on Pramipexole or mirapex as you call it 5 years now. I have had augmentation and I have found that the lower the dose the better. RLS is hereditary my grandma, mum, me and now all of my children have started with it. It's a horrible disorder, having ms is bad enough but both of them sometimes can be wicked. Mine has been much better since I had a hysterectomy 2 years ago, I had to have a growth removed so they took the lot, anyhow, thank God I can sit now. Even sitting for 5 minutes used to set it off. Anyway you take good care of yourself, keep fighting, cheers Jimeka

[normwithms in reply to Hidden]

MSFighter you have come up with my latest attempt to solve this. I have been sleeping without any covers on my legs (no matter how cold) only some very soft light socks. It seems to have solved the problem. I have been experimenting since my first post. No more night time sunburns so far. Thanks for your confirmation