Burning sensations : Hi I was diagnosed... - My MSAA Community

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Burning sensations

ktaylor8899
ktaylor8899

Hi I was diagnosed last month- spent a week in the hospital on IV steroids. Went home ok and today (a month later) my legs are burning hot I can barely walk. Went to the ER and my neurologist said go home he doesn’t want anymore steroids. I am confused and I don’t know what to do for the burning feels like half my body has a sunburn. I don’t see him again until Friday. I am newly on low dose of rebif as of last week. Anyone have suggestions?

19 Replies
oldestnewest

Hi, and welcome! Sorry that you have joined us and are having such a hard time. I don’t have burning, but many others do and they will chime in soon. Sometimes there’s a rebound of symptoms after the steroids wear off 😭 Subsequent doses may not help relive symptoms as much, and they may increase your chances of developing black holes later on. (You’ll have to look all that up because I read about it years ago 🤷‍♀️.)

Stress reduction, staying out of the heat, watching or reading something funny, sleep, naps, meditation, prayer, and a glass of wine are my only thoughts for managing this crappy phase of a relapse.

ktaylor8899
ktaylor8899
in reply to kdali

Thank you! I am out of work the rest of the week to hopefully relax more. Maybe that is why he said no more. I have a long crazy 10 year long health history of misdiagnosed “mixed connective tissue disease” after tossing around ra and lupus. But never MS til I couldn’t walk last month. I was pumped full of 1gram a day for 6 days. Right about day 5 I could walk again- I just feel it going down the same path as las month so it is concerning. Maybe a glass of wine is a good idea :)

kdali
kdali
in reply to ktaylor8899

Not this again?! 😵 I’ve never lost function, but I’ve had the depressing return of symptoms after steroids, just a few weeks ago. I had one day this week normal though 🎉 I hope this is a bump in your road to recovery. 🍷 cheers to finally knowing

Hi, ktaylor a very warm welcome to u to our wonderful, supportive family of MS warriors! Yeah Kdali is right, make sure it is good red wine (Sangria) much more fruity & better for ya, & my CBD dark chocos help my burning & pains.😍😍😻🙏💓💞 Many Prayers. For U & Blessings---Jazz

I have only recently started exploring CBD, do you have any recommendations?

Yeppers, sure do, get blue danu dark chocolate edibles (cbd) there is also a new cbd cream, i think it's King cbd cream, that also helps my spacisity & burning like sensations from the heat.👍😻Take carw of u.Blessings😻💓--Jazzy

I know it’s hard but usually the steroids help over the next few weeks and gets better with most. A cool bath may help and stay out of the heat 👍. I was diagnosed twenty five years ago and been on seven different DMT’s. They all work differently on each of us as we are different. Fortunately there are several out there to try if one doesn’t work 👍. Go to MS manager and use it daily to document what is going on. You can also share with your doctor. I find it very helpful. Good luck and keep us posted 👍🙏🐾Ken

greaterexp
greaterexpCommunityAmbassador

You’ve already read these great suggestions, but I’ll toss out another welcome. This is such a supportive group!

Sometimes doctors can prescribe things to help with painful sensations, so I hope you keep track of your symptoms and let your neurologist know when you next see him/her.

Let us know how you’re doing, and I hope you get some relief soon from the burning. I know how disconcerting it can be, to say the least.

Jesmcd2
Jesmcd2CommunityAmbassador

Hi ktaylor8899 sorry about all the trouble your having. Everyone has given you great advice already. My question is, is your neuro an MS Specialist? If not get to one. 😊

Give your body time to adjust. Steroids do a number on your body. So give it time too settle and see what happens. And breath!

🤗💕

J🌠🦈

ktaylor8899
ktaylor8899
in reply to Jesmcd2

That is a good question- he was the neurologist that diagnosed me when I went into the ER last month and I have only had one follow up. I will need to look into it!

Hi, ktaylor8899, sorry to hear you have been diagnosed. Yes i am on Rebif. Get in touch with your Rebif Nurse and MS LIFELINES. I also found it very helpful to get in touch with the National MS Society and get their helpful information sent to me. Good luck. And please do breath.

ktaylor8899
ktaylor8899
in reply to esor

How is the rebif working for you?

esor
esor
in reply to ktaylor8899

The Rebif is fine, only 2-3 wks of flu like symptoms.

Hi. Sorry you're having such a difficult time. I don't and never have had the burning sensations, nor have I ever been on any steroids. I have been taking Rebif for 8 years since my diagnosis and so far, so good; no more lesions. Kdali had a lot of really good advice for you below. Rest, rest, rest....don't overdo things; explain to your loved ones and friends if you're having a difficult day. And learn to say no....took me about 6 years to learn that word and it helps so much; if you can't do something (fun or not), don't do it. It's okay and if people don't understand - too bad! Wishing you a fabulous day!

ktaylor8899
ktaylor8899
in reply to Vitti1

That is wonderful to hear Neuro said it will probably be another 6weeks until the rebif really starts working.

So, Neurologist just said everything about my situation is bad and hoping for normal is kind of out of the question right now. He said it is a combo of steroids wearing off, the new medication(rebif) isn’t quite up to par working yet and it is 105-110* where I live. He said I have A LOT of brain involvement and the “Uhthoff Phenomenon” is making it worse. So, I said what do I do then? He said come to the acceptance that I have a disease that is already fairly progressed and understand it is just all bad and nothing about it is normal so don’t expect normal. Took me out of work til Sept and then prescribed me Acthar injections to help reduce inflammation. He said with all considered he doesn’t think I will be on the upside of “well” until Oct-Dec. I feel his bedside manner needs work.... he is nice but dang.

I'm glad you saw the neuro again, and the heat affects us all. Stay in the cool and drink plenty of water! I was so sick of drinking water, but i still keep it up. Good luck with all, and look forward to fall.

Check out Duluth, specifically their "armachillo" line. That won't stop the burning itself, but it might make your legs feel a lot better!

Hi ktaylor8899! As others have said, make sure you see a neuro that specializes in MS because they tend to be much more knowledgeable about MS and appropriate treatments.

I have burning pain from my knees down to my feet. It’s caused by neuropathy that was a ‘gift’ from my one big flare up. (I was diagnosed 19 years ago.) A combination of gabapentin and acupuncture keeps it under control. Unless I’m under extreme stress like this past week when all my ‘normal’ symptoms flare temporarily and the burning pain is one of those.

MS affects everyone differently so it takes some trial and error to figure out what works to control your symptoms. Good luck!

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