Boiling kettle Syndrome!

Everyday living
1

Hello everyone,

I hope you are as well as can be.

I have had a very trying day with what I call Boiling Kettle Syndrome,i.e, the feeling of having the contents of a boiled kettle thrown all over me. All down my right side, including face, neck, arm, hand, trunk, leg and foot. So painful to touch anything or have anything touch me! I have just increased my pregabalin on neuros recommendation, but this is worst episode I’ve had for a long time. Does anyone else have any ideas for relief? Thank you so much.

Alisonxx

2

hi alison

thats a very graphic image of you getting scalded!

i know its just signals going berserk

maybe a cool shower?

i get way too hot at times and a cool shower helps me.

i’m not tough enough to have a cold shower but i start it off warm and slowly turn the temperature down.

carole x

3

Thanks Carole,

Thats a good idea. Will try before I go to bed. I can’t face the sheets and mattress scraping me tonight.

Thanks so much for replying.

Alison xx

4

Hi Alison I’ve only ever experience this once & it really wasn’t nice, like Carole said I just had a cool shower & took myself off to bed, thankfully it helped & I slept quite well, however did wake up in wet through pj’s & no I hadn’t wet the bed!! Strange this disease is, have also felt like I’ve had icy cold water running through my body!! Hope you feel better tommorow Sue x

5

Hi Alison,I understand what you are having to endure as I have the same sort of thing below the knees on a delightful permanent arrangement along with various other pain.I have been dumped by the NHS and left to play Pick’n’Mix with a varity of goodies including,Gabapentin,Lamotrigine,Diclofenac,Morphine patches(two on a permanent basis),Liquid Morphine, Tramadol, oral Steroid and Duloxetine.

The patches are there for good as is the Duloxetine and Gabapentin/Tramadol.If the nastiness continues I strongly advise getting to the GP and demanding other things to try.He/she/it will probably want advise from your Neuroligist,but if this will take more than a day try your MS nurse if you have one and if all else fails A+E.Out of hours they should try and contact a Duty Neurolgist somewhere and they should make a decision if nobody else will.

Good luck,and PM me if you can’t get any help.

Wb x

6

Thanks everyone for your really helpful replies. When I woke up this morning didn’t feel too bad until I started to move, then OMG, that’s painful!! So, have taken a slightly higher dose of pregabalin ( which I was advised to do by my neuro a few weeks ago on a gradual basis) am wearing a very light cotton nightie and have retired to bed for a while. It’s really weird the things that happen. Sue, I’ve lost count of the times I’ve jumped up thinking that I’d spilled cold water over me, when I haven’t even got a drink in my hand! Wb, think I’ll get an appointment with the doc next week and discuss some extra pain relief. I’ll make a list of stuff you suggest and see what he says.

Keep well everyone,

Alison x

7

Hi Alison, might be worth trying a different drug. I’ve tried different ones and for me Amitriptyline has been the most helpful for burning and itching.

Different people find different drugs helpful… we are all different. So might be helpful to wean off Pregabalin and try something else. But only do this with advice from doctor.

Pat x

8

Pat,

Thanks for replying. I’m seeing my GP on Monday week and I might ask him about Duloxetine, which my neuro also mentioned when I went to see him a few weeks ago. Apparently it is similar to amitriptyline, so could be very useful. I used to be on amitriptyline, years ago but had to come off it as it gave me atrial tachycardia which was very unpleasant and I spent 6 months on a beta blocker to calm things down! But Duloxetine might be ok and worth a try.

Certainly, the higher dose of pregabalin hasn’t helped so maybe time to change.

Thanks again.

Alison x