The summer heat and FND

[mushala72]

Hello all, does anyone else have problems with the summer heat? I’m feeling fine until I go outside then I’m slurring my words and dragging my left foot. I hope someone can help me with this.

Take care,

Michelle

[WesleyBuck]

I work full time (inside, luckily!) and heat and humidity does make symptoms worse and completely zaps what energy I may have. I can’t afford to go on disability and sounds like it can be a battle even as a possibility, so I work the days I can and call in for the days I can’t. I typically miss 1-4 days per month. I also try to plan ahead and request a Monday or Friday off just to help rejuvenate. I’m really only comfortable between 70-74 degrees and outside of that it’s chills or sweat. I am fortunate to be able to work from home, but it’s still a full time job trying to keep my temperature regulated. I definitely don’t get the immaculate yard man award any more! I just can’t be out there doing all the work I once did. Try to keep your head and feet where they need to be temp wise and hopefully the rest of you will be comfortable. Other than that, slow and steady wins the race. Take breaks if/when you can.

[Brokendeer]

Hi I have Motor FND, this means mainly coordination issues with my legs and arms, so basically the longer signal routes of the nervous system struggle daily.

Because of this, certain Barometric Pressures i.e weather conditions can make the body/brain pressures shift and slow the nerve signals even more and yes, more difficulty processing the signals for the overloaded brain (which you have anyway with FND).

Barometric Weather Pressures: Basically anything over 1000 mb Barometric readings is okay, the higher the reading the better to some extent. Under 1000 mb means storm type conditions and increased risk of foggy/groggy brain and `walking though treacle' sensations. Of course, a big dip in Barometric pressure is usually not able to be compensated and I just have to rest until it changes.

Humidity: The average human finds 70% and Over & 40% and Under uncomfortable. I find indoors keeping windows shut sometimes reduces the outside humidity getting in - crazy as it sounds.

Various techniques I have tried that may help:

1) Make sure to be properly hydrated i.e drink water to balance the blood pressure. The Spine & Brain uses more water than you think. Caution; too much hydration will cause lowering of blood pressure.

2) Take something like Paracetamol on those stormy/humid days which will raise the blood pressure and reduce your temperature - improve brain fog/circulation. Alternatively drinking a glass of Apple Juice will naturally raise blood pressure/natural sugar levels. If cold try a Hot Chocolate for the same effect this increases the heartrate, similar but not the same as caffeine.

3) Do not keep one position too long, so as to relieve any bad posture points and to keep the blood flowing/pumping evenly. Pace activity into small manageable tasks with plenty of breaks. Recommend not tilting/turning the head upwards or raising arms above your shoulder level or any sudden movements - this will strain the blood pressure system (think about your balance centres of the eyes/ears and keeping them level). Sometimes I sit lower to the ground; so as to get relief of Barometric Pressure on the sinuses - where I get a lot of headaches in bad weather and with Seasonal Allergies like with Tree pollen.

4) Make sure you have the right clothing on for the conditions, ideally try and keep your body temperature to a happy medium heat throughout the year.

As a guide:

If you are active walking or using crutches/walker/manual wheelchair - wear ONE LESS layer clothing than you think you need.

If you are not physically that active such as sitting, laying or using a power wheelchair- wear ONE MORE layer clothing than you think you need.

Wear a lightweight (not tight) sunlight blocking hat outside: to reduce bright light, even in cloudy weather the UV light can aggravate your eyes and thus overload the brain signals.

Wear lightweight but adequately supportive shoes or boots, sandals are lovely but can cause issues with needing extra brain compensation adjustments in balance when walking. As walking for even non-FND people takes over 200 muscles to coordinate to take even one step forward, so imagine how much extra work it takes an FND sufferer!

Look for the calm in the Storm!

[WesleyBuck in reply to Brokendeer]

All good points here. I hadn’t thought about barometer, but I know humidity is a huge component for me (Midwest, ugh!). I’m also much more sensitive to light now, so nice to see someone mention that. I’ve even turned my tv brightness down to 12! Thanks for sharing!

[HenriettaPoultryfoot]

My heat tolerance is lower. I fatigue more quickly when hot and my walking deteriorates some. I am ok for an hour or two. Then done for the day.

[Prosaic_One]

My responses to heat are profound & sounds like that’s the case for everyone else here. All year round, I struggle with maintaining body temperature. I’m on the East Coast, USA so summers are ridiculously humid and global warming has made it significantly more uncomfortable.

My eyes seem to be the first thing that sets off the rest. Bright morning sun feels like daggers and I awaken with migraines most days now.

I recently developed photophobia where I become covered in these purple hives. I feel a strong burning feeling, like if I were to spill tea on my skin. The most alarming thing for me is that my body won’t cool itself down. I’ll suddenly stop sweating & continue to feel like I’m steadily getting hotter. Ice packs and LOTS of ice water help me to stay cool.

In summer, I can’t tolerate more than 45min outside even if it’s cloudy. I have also noticed dew point and other environmental factors seem to trigger symptoms. I get easily confused/disoriented and clumsy.

I’ve been on disability for over a decade so I don’t have to go out when the sun’s out. In summers, typically no one sees me out when the sun is up. I feel like a vampire often.

[whirlygirl16]

Yes I have problems with heat if I go out in it for long, it seems to set all my nerve issues off but also I get terrible problems with cold I think more so than heat. How are you in the cold weather?

[mushala72 in reply to whirlygirl16]

Hey whirlgirl, I freeze in cold weather and have Raynard’s disease in my hands. My hands are awful in the winter with lesions, necrosis and pain. I’m used to the cold but I hate that the summer slows me down a lot. I don’t heat up but the heat seems to slow my body down with my left foot dragging and my tongue feeling like a ballon in my mouth. Either way it’s a complete pain in the tush.

[whirlygirl16 in reply to mushala72]

I agree this FND is a pain with so many weird symptoms. I hate it! I hope we get better soon and start to make a recovery from this awful condition

[Yasmin-C]

Apparently it’s the hypothalamus that should regulate temperature. I used to love summers in the sun but now mostly stay in a darkened room with a fan on. My digestive system gets affected, too, as does my mood. I am supposedly under the care of St George’s hospital London for FND but haven’t heard from them in almost a year. Last time I met with a specialist there he admitted he / they don’t really have any answers for FND. Does anyone else feel really alone with this?

[whirlygirl16 in reply to Yasmin-C]

Hi Its shit that we don't get the care we should for this condition. I live in Wales and there is no help at all from the neurologists just given a website and basically told on your way and don't come back. Which I laugh at now but at the time it shattered me. Hope you get to see your neurologist very soon and get some well deserved help because we are all important

[Yasmin-C in reply to whirlygirl16]

Thanks Whirlygirl. I hope we all get some help with some real answers very soon. Someone must be researching this somewhere who has a better idea than the so-called 'specialists' who seem to prefer to either ignore us or send us on our way with nothing. And get paid very handsomely for doing so. I wish I could get a specialist's salary for not knowing anything about my specialist subject! I can't work because of FND and the financial stress certainly does not help. Good luck to you, too.

[whirlygirl16 in reply to Yasmin-C]

I'm with you on every point you've made. I can't work either and yes you're right it does not help due to the stress of finance worries along with everything else we have to deal with due to this condition.Good luck too on your journey with FND x

[DarkBlackberry in reply to Yasmin-C]

I live in the Utah, USA. I lived with what I thought was just a vocal tic for 17 1/2 years. I think it was in May that I was referred to a specialist who diagnosed me with FND. This gave answers and hope. This website has been a blessing because for many years I have felt alone and no one to relate to with what I now know to be FND. I am here for you if you need a friend.

[mushala72]

Yasmin, I feel the same. I was diagnosed last December with FND, told by a neurologist that I had to believe everything was okay & sent to a shrink who released me after 3 sessions. I joined this group to hopefully find help and help others. Take care, Michelle

[Yasmin-C in reply to mushala72]

Hi Michelle, sorry to had you had that experience. If I had money, I would try so-called 'alternative' therapies. This condition leaves one so isolated and even massage or reflexology would be good, I'm sure of it. Has anyone tried those and have they helped?

[mushala72 in reply to Yasmin-C]

Good morning, Yasmin🌸I tried acupuncture, Botox in my neck and shoulder and some heavy duty meds to calm my body down. I stopped all treatment to keep my body clean since I was told my diagnosis was not due to any other disease. I have great days and then crappy ones. Every morning I take a bit of Delta 8 to calm my tremors and it helps most of of the time. But when it doesn’t I know I’m not getting enough sleep or something is stressing me out. On great days I get so much done around my home( but I’m slower than I used to be) and on crappy ones I take the day off and couch it with a good book. Some times the exhaustion is overwhelming. I don’t want it in my life or have my family suffer with me. I’m hopeful that one day soon FND is fully understood and all of us who suffer from it get solid medical help and respect from physicians that we deserve.

[WesleyBuck in reply to Yasmin-C]

Early one, when my symptoms were more mild, massage would help quite a bit. Me and my massage therapist would laugh the whole time as massaging some parts would illicit different responses in those or different parts of my body. I don’t get as much out of it as I used to, but it still relaxes me and that’s always helpful. I would like to try acupuncture or even one of those float spas. Anyone try floating?

[mushala72 in reply to WesleyBuck]

I float in my spa every day. It helps everything calm down in my body😊

[Misstea]

I actually do better in the warmer months than I do in the cold. I try to take advantage of being able to walk mostly without a cane until it gets really cold.

[Obrien8175]

This has been a very hot and humid summer, I’m in Massachusetts, USA and the heat triggers my FND and makes me exhausted, exhausted almost just thinking about it. My brain fog increases and my tics and twitching. I feel for you all.