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Burning Up!

Hi,

Does anyone else experience a “burning/hot/tingling” sensation throughout most of their body?

I had had a bad night waking up at 3 o’clock, taking pain relief (not unusual) then and falling back to sleep about 4.30 a.m… On waking at 7 a.m. I thought I was OK. I sat up. My hubby brought my usual cup of tea at 7.30 a.m. I remember nothing till, at 10 a.m. I woke sitting up, something I’d never done before. I felt very unwell - weak and floppy with shakes in in hands. And, this painful burning sensation from my hips upwards. It covered my torso, arms and hands. My hands were shaky as I tried to sip tea. My head was foggy and woozy. I lay back hoping this would all pass but wondered whether this was a precursor to a further downward step in my PPMS.

As the day passed resting in bed the feelings gradually eased. It has left me anxious to know whether this is part of the course or something separate I should discuss with GP?

Most of my symptoms to date have been gradual. I now “furniture walk” indoors and use a wheelchair for outdoors and distances of more than a few yards. I use Peristeen for bowel incontinence - works well. Am taking Gabapentine 3300 mg daily for the “tingles” and pain mostly in lower legs and hands with Tramadol + Paracetamol for pain when needed. I have had only two instances of “burning” sensation before but in my spine and they didn’t last long.

I hope all this doesn’t come over as un-necessarily protracted. But, this episode is really worring to me as I haven’t heard anything similar being posted before. Sometimes I think I must be going a bit do-lally!!

Any words of advice/comments from folks in the know would be helpful.

Anxious Anne

Hello Anne, i was just going to go to bed and saw your post. When i first started to get ill i had what you have just described i was very ill so weak so floppy and felt like my skin was burning i completely lost all mobility and unfortunately was left with a loss of my mobility and although much better never got enough back to walk outside the home. inside i’m good at doing furniture walking. I haven’t got an official diagnosis so don’t know what to advise, i just hope that you feel better soon.

Michelle x

Thank you Michelle,

For your response. At least I now know that I am not the only one to experience this peculiar episode. I’ll keep hoping for further comments. Your level of mobility sounds akin to mine. I seem to have mostly recovered but feel really washed out. So, here’s hoping.

I hope too that you finally get a diagnosis. Being in limbo is a horrible place to be. You’ve nothing to “hang” your symptoms on. I do hope you receive support from medics, nurses that are sympathetic to you and give you the supports you need.

Kind regards, Anne

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Hello, Anne.

I think a lot of us experience a variety of burning sensations. I have the flame-throwers on my legs when I move them and the ice blaster when I don’t. I’ve had this for about four years now. As my neurologist seems to be denying my existence (the last “regular” appointment was 2011), I haven’t had a chance to ask him.

I’m also going through a lot of fatigue at the moment. Mine seems to go in phases. Currently, I can get up early for five days of the week and have to catch up on any two days. My regular routines of sleeping and getting up are now becoming a little more flexible.

Obviously have a word with your doctor or MS nuse if you have one.

Best wishes, Steve.

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Hi Anne, I suffer the same and have for some years.

My MS nurse said that my body doesn’t control my core temperature well…common with MS…and then when I get hot I get Utthoff’s Syndrome (google it…it’s also common with MS…all symptoms get much worse when you’re hot and along with that I feel like big pins are sticking in my back).

I changed to 100% cotton sheets and nightie’s…that has helped a bit. And try and stay cool. Problem is if I get too cold I can’t warm up again!

You don’t say how long this has been happening, but I think it would be worth having a urine test just to see if you’ve got a UTI. They can make you very poorly and you don’t always have burning when you pee…which is one sign of having one. See your GP just to rule other stuff out.

Take care,

Pat xx

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Thanks Steve,

At least I know that what I am experiencing isn’t something from outer space! This was my third burning episode.

You mention your fatigue - this is something that can hit me at any time. This evening I missed Eastenders plus the next hour till hubby woke me up from my deep “sleep” (if I can call it that) to watch the last episode of Shetland. I have to drag myself out of this fatigue sleep. So, I can empathise with you. It can hit at any time without rhyme nor reason. The falling asleep is only part of the fatigue. I do wish though that there was a way of regulating to normal sleep patterns. I’m always worried that day turns into night.

I will have a word with our MS nurse when I can get hold of her.

Sorry too about your neurologist. I sometimes think that once they give you a diagnosis that they can shut the file and leave the day to day management of care to specialist nurses, physio, etc.

All the best, Anne

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Thanks Pat for your reply,

I can understand the body temperature control bit. I don’t like hot weather these days (well Summer will be here soon!! She said hopefully.) as I seem to overheat too easily. The bit about poor core temperature control in MS. I’ve always used cotton sheets and nightwear but it is a good suggestion for folks who may use polycotton.

This is my third episode of “burning” in the past 6 months and they do not last more than a few hours but are intense. This one lasted the longest though. And it left me feeling wobbly for a couple of days. The first two episodes were just my spine and didn’t last as long. I don’t think it is UTI as the episodes have been weeks apart.

I’ll have a chat with our MS nurse.

Thank you for your interest though. It is much appreciated.

Kind regards, Anne

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Steve your Neuro wants shooting!!! I think it’s disgusting that he’s written you off. Please tell me you at least have an ms nurse? If not you can self refer to one as the nhs guidelines state you should have a designated one. I have the referral information if you want it.

Not trying to interfere but I do think you’re not getting the support you should have. Is your gp clued up enough on ms?

Cath x

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Hi Anne

I have had similar feelings, thankfully not too often. What happens to me, is that I can be doing any particular thing, and without warning, it’s almost as though I am frozen, unable to move and extremley weak. I have to lie down and wait for it to pass, anything from 30 mins to a couple of hours, and it is really scary, like a feeling of having no control. Even when it has passed over, I can feel wobbly and shaky for the next couple of days.

It is totally different to what I experience most days around 2 or 3 in the afternoon, when I suddenly feel like I have hit a brick wall, overwhelming fatigue, whereby I have to take a quick nap, sort of recharging batteries. This feeling is by no means scary, as I know sleep will improve it somewhat, or at least help a little.

All very strange, and to someone without MS reading this, they would think I had lost my marbles, but it is quite difficult to explain. Take care.

Pam x

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Thank you Pam,

Your response, and all the others, really do re-assure me that I’m not alone with all these varying symptoms. I never knew there could be so many and varied.

It is only since I joined the PPMS forum that I began to feel easier about this condition. Before this I was struggling everyday wondering if I too had “lost my marbles”. Was this all in my head was a phrase I often used especially when the symptoms were mild and infrequent.

Thank you so much.

Take care too.

Anne

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