Bodyheat issue

[Ataxia]

Hi Guys

I have MS. Diagnosed in 2014 and taking Gilenya once a day. I have a weird symptom I wanted to post here about. I guess it might be a form of dysesthesia. It happens when I am sitting or laying down. After a short time, the places of contact on the bed or chair like my bottom, back of thighs or back and back of neck feel warm due to my own bodyheat. It doesn't take long and I have to move or get up because it feels like a burning sensation. Anyone else have this or managed to treat it?

[Scott1]

Hi,

It's not a problem for me but I'd like to understand the issue better.
What sort of filling is in your chair and mattress? Is it rubber?
Does the bodyheat cause you to sweat or is it just a sensation of discomfort?

Regards,

[Ataxia]

Hi Scott

Any chair or mattress.
No sweat, just discomfort.

It can also be Winter or Summer. So I can feel weirdly hot and cold at the same time.

[Scott1]

Not having had it doesn't help me think it through. It does sound postural, which makes me think of some sort of nerve compression. Does it start/ feel most noticeable at a particular spot ?

[Ataxia]

Hi Scott

Thanks for replying.
It doesn't seem postural to me. It's weird because I can have a hot shower or be in hot weather and I am Ok with it. But when my own bodyheat heats up a surface underneath me it can become quite uncomfortable. Like a heat/stinging sensation.
My neurologist did not know either but gave me a prescription for gabapentin. This is not help and made me feel depressed (a known side effect) so I stopped taking it. No particular spot, anywhere where there is contact between me and the surface my own bodyheat has heated up.

[Scott1]

Hi,
Let's assume this has something to do with sensory fibres. There are quite a few classes. The ones that respond to things like light touch, hair movement and vibration are called mechanoreceptors. They generally excite big, well myelinated neurons.
They help us determine where we are. They work with a smaller, lightly myelinated neuron called a thermoreceptor. It responds to temperature (usually, but not necessarily, cold). If either is damaged we find it difficult to discriminate when handling objects (i.e doing up buttons)
There are other sensory neurons like high threshold thermoreceptors that usually only respond to noxious heat and there are unmyelinated thermoreceptors that are excited by innocuous temperature. Maybe these are the ones at work here.
It's possible, if a structure in the brain is damaged, that a persistent burning sensation can arise. However, your problem is triggered by contact, so it probably isn't a structural problem.
I'm not sure what the thinking behind the gabapentin is. They might be trying to reduce the general excitability of your neurons. It's very general, rather than specific.
Do you have any tightness issues?
Regards,

[Ataxia]

Thanks Scott

I don't have any tightness issues. I know that heat sensitivity is common in MS so maybe my issue is a form of it? Symptoms in MS can vary greatly and that everyone's experience with MS can be different. I guess the brain is complex and legions in a specific area could cause a unique effect. Luckily for me, I only ever had one main symptom of MS back in 2014 that lead to my diagnosis. I lost fine motor control of my left arm associated with numbness that spread down from my left index finger down to as far as mid-left thigh.

Just wanted to add that I did try a cooling mat meant for pets. It did help, but leaked and then was no longer effective. The liquid is toxic? Some may have absorbed into my skin. If it leaks, I wouldn't recommend such a product for pets either! I am thinking of getting a gel seat cushion. Do you (or the community here) know of a suitable product that can cool the back also?
I saw some with fans (meant to be used in the car), but they are meant to be plugged into a power source which would not always be convenient, so wanting a non-powered solution. Thanks

[Scott1]

Hi,

Although it sounds counter intuitive, I found if I put a thick sheeps wool fleece as a topper on my mattress that I was more comfortable when I slept and had better temperature control. A proper fleece has lots of airpockets in it that make you feel like you're floating on rather than sinking into the bed. Decades ago, it was a common practice in hospitals to avoid compression sores for really ill patients. You definitely don't overheat if it is underneath you. Although they are not cheap, it might be worth a try.
Regards,

[NHE]

Hi Ataxia,
Have you seen the Purple Gelflex mattresses? They’re advertised on TV in my area. They’re kind of pricey though. However, they might be a solution for you. The openness of the grid matrix is supposed to help you stay cooler.

https://purple.com/

[jimmylegs]

hi ataxia,

i am late to this chat and wondering if you've already ruled out the possibility of an active lesion of the hypothalamus?

Periodic hyperthermia and abnormal circadian temperature rhythm in a patient with multiple sclerosis
https://journals.sagepub.com/doi/abs/10 ... lCode=msja
"We describe a 45-year old patient with a 13-year history of MS, who developed a clinical picture of recurrent hyperthermia. MRI showed a bilateral involvement of the hypothalamus in the setting of diffuse white matter disease."

if not, if it were me and i knew it was such a lesion, i'd be investigating all possible means to reduce oxidative stress and associated inflammation.

you may already be taking steps along those lines. if not, could be something to consider.

[Ataxia]

Thanks guys for your suggestions.

I do plan to go through my MRI reports to determine where my legions are and study what parts of the brain are affected.
I am Ok in bed at this time, I just flip the pillow and turn over. I have sinus issues so need to turn anyway.

For now, I am going to get a gel pad to sit on and a small sheepskin rug to have against my back. Also thinking of getting a sheepskin car seat.

At some later stage, we are looking to get a better bed, so thanks for the purple suggestion.

[jimmylegs]

sounds good; hope all goes well!

[Ataxia]

Hi Guys

I had the gel pad for a while. Only got the sheepskin today. I don't think either help too much. The sheepskin might be a bit better. Not sure what else to say. I just thought I may as well update my findings here.

[Scott1]

Hi,

This is going to be trial and error. I'd still try a full sheeps wool topper over the mattress. A gel pad wont breathe but the wool will.
Have you tried magnesium glycinate? It should help dilate the blood vessels which might help your symptoms.

Regards,