Heat

[Hartleyhare2]

Hi all, my main condition is fibro but I also have RLS. This week has been the worst ever and the only thing that has changed is that it is unusually hot here in UK. My bedroom is like an oven! I had heard that warm weather improve RLS for many but was wondering if it aggravates it for any of you? The heat makes it difficult to sleep as well.

The nerve flickering is not just confined to my feet and legs though it's in my arms, shoulders and torso as well. It's not happening just at night but throughout the day. Maybe this is just a bad week. Do people have flare ups with RLS then it calms down again? If I'm honest I'm frightened, it's never been like this before and I'm concerned it is a progression rather than a temporary thing. I can't sleep, struggle walking and my cognitive function is shot to bits. I guess all I can do is stay calm and see how it goes. My GP has me on 5mg of Diazipam twice daily which up until now has been very effective.

Could it just be a flare up because I'm not used to this heat? Experiences and comments gratefully received

Patrick

[Matrix]

Patrick ,I'm the same it's all over my body ,I prefer cold for restless leg and body problem .I also have fibro all 18 tender points,anyone has to be careful when they touch me firmly because it really hurts and I feel it for ages .I know from mine it is /has been worse and I'm totally exhausted.

Though what I do find that if it comes on in the day if I get up and walk sometimes it will avert disaster but it has to be straight away no waiting 5 mins or it gets a hold ,well it does for me but I think my nerves are totally on go all the time.Keep you're chin up .Did you get you're stuff sorted out yesterday ? Xx

[Hartleyhare2 in reply to Matrix]

No has been rescheduled to tomorrow. Sharon got a freebie VIP ticket to the gay pride carnival and was on a float! Too tipsy to drive home and stayed at her brothers! Lol

Trying to stay positive but the RLS is at a whole new level at a bit overwhelming. Nerves flickering all over body and lack of sleep don't add to usual coping skills. Have done usual stretching routine but legs not strong enough to do exercise physio has given me. Hopefully some point during week will be better.

Going to up the magnesium and see if that helps a bit plus learnt about dry body brushing to stimulate fibres in legs and rest of body and help get rid of toxins. I think I'm definitely a cold person, it's easier to warm yourself up than cool your self down! xxx

[Matrix in reply to Hartleyhare2]

Hi you need zinc as well ,I'm hating this heat ,maybe spain is not a good idea after all lol .Hope it all goes well tomorrow with trip to sort you're stuff out .

Bet she had a great time ,bit lonely for you or are you good on you're own .I agree on it's easier to warm up than cool ,all I can do is sit in front of fan .Its going to be cooler this coming week my friend so yeah on that.xx😇

[Hartleyhare2 in reply to Matrix]

Yes, I've always taken zinc as a vegetarian and don't get it much in our diet, important for vege men who want children to take it!

I think Spain is different. Going abroad you mentally prepare yourself for the heat. Plus your in holiday mode so take things at slower easier pace. Having a breeze or being near the sea or a pool helps too!

She enjoyed it apart from all the standing around as floats got back logged. She said it was amazing how gorgeous and good looking a lot of the gay guys were! I'm good on my own, probably too good, I could easily be a hermit but only am very outgoing and sociable too! Yes my sister says rains on way. It feels cooler this morning and my RLS is behaving. I whispered that bit just in case I wake it up!😂😂😂 xxx

[Bkc1777]

Hi,

You are not alone. I can't cope with the heat at all. Mine all started when I was in Turkey last August ! So I believe heat is my other trigger. Have been up with Rls last 3 nights cause it is just so hot!

Till last week I thought that my rls was gone but you are so right about flare ups. I get it in my arm too. So let's hope it will calm down soon :))

Stay strong.

B.

[Hartleyhare2]

Thanks B,

I'm not totally mad then, heat can be a trigger. Thanks for sharing your experience.

Patrick.

[TobyTobias1 in reply to Hartleyhare2]

Heat is def a trigger for RLS for me, I'm climbing the walls, having cool showers during the night and my legs and arms can't cope with any type of bed cover on them.trying to keep meds as low as possible as don't want to end up in augmentation again. Had Ferritin levels checked and GP thinks 40 is good . So Have bought some Ferrus Fumerate today to see if that helps and also CBD gel tabs to try. I always thought I was imagining things and going crazy with my legs, this website has just shown me how many people are suffering out there and it is so difficult to explain to people how this illness impacts our lives. So yeah, cool is def best for me. Here's hoping my new 'meds' help....

Reet

[Hartleyhare2 in reply to TobyTobias1]

Hi Toby, sorry to hear you are suffering. I have a really old soft cotton sheet I am using at the moment, the duvet is too much.

I tried organic CBD tincture and to be honest I'm not sure if it made a difference or not. I thought it I'd at the start but it may have been wishful thinking. But we are all different and I am certain it has medicinal qualities. When things get really bad and not slept for a couple of nights I have had a joint which calms the nerve endings down, relaxes my muscles reduces anxiety and helps sleep. I think it madness we don't have access to cannabis but they give me morphine tablets, oramorph, tramadol, Diazipam, co codymol, Duluxotine and sleepers! All of which are dangerous addictive drugs with nasty side effects. Big pharma and money wins out over a natural plant remedy, madness.

Hope you find something that gives you relief.😀

[Eryl]

It could bee that because of the heat, your diet has changed, and it is something in the diet that is making the rls worse. Most likely culprit for me would be artificial preservatives in salad dressings and dips. Have you tried going gluten free for the fibromyalgia?

[Hartleyhare2 in reply to Eryl]

Hi Eryl,

Going gluten free is something I have not tried. I'm aware of it but have dragged my heels at giving it a go. Must try it. Does it help you?

I eat a lot less during the heat but not that differently. One thing maybe that I drink too much water. Apparently three to four pints of pure water is ideal with six the max. I think I drink about eights pints of water a day and one glass of orange juice.

Going to cut back on water and will look at diet, thanks😀

[Eryl in reply to Hartleyhare2]

I don't have fibro, but have read that it can be caused by gluten.

If the rls is indeed caused by something in food then I would have thought that reducing water intake would tend to prolong the problem,

as it would take longer to excrete the cause of the rls.

[Hartleyhare2 in reply to Eryl]

Your water rational makes sense to me. Also I don't feel like I drink too much water I just have some by me all day and night. My only concern was that if the professionals think of drinking too much is it because it will make my stomach acid weaker and not digest food. I'm a stocky 16 stone bloke so different needs than a slim small person.

I have found plenty on FODMAP and trying to work out what is good in current diet.😊

[funnyfennel]

I take a cool bath before bed and also have freezer "things" which can be wrapped in a cloth and distributed around the bed or below a fan to cool the air. Its hard I know. I go out very little in this heat, but do try to exercise a little as well.....swimming is v. cooling...

best of luck to us all....

[Hartleyhare2 in reply to funnyfennel]

Cool bath sounds good. I was in electrical goods shop today and they had dyson fans. Totally amazing compared to normal fans, has real blast of air! Unfortunately start at two hundred to four hundred pounds!

[funnyfennel in reply to Hartleyhare2]

A normal fan is good!!

[Hartleyhare2 in reply to funnyfennel]

Like a groupie you mean? 😂😂😂

I was thinking of getting my 15 year old to waft a mat, in the absence of a large leaf, to keep me cool and earn his pocket money! Lol

[Pallawalla]

Hello! I'm wondering of your fibro is under control? The nerve flickering can be fibro and heat can really affect it as well! Wishing you the best!

[Hartleyhare2 in reply to Pallawalla]

Hello Pallawalla,

I don't think my fibro is under control, but how do you control it? I try to eat healthy vegetarian diet and I don't drink alcohol or smoke. I take my Meds, vitamin and mineral supplements, clean pure water. I can't exercise much but try to do a gentle bit and plenty of stretching. I massage my legs with magnesium oil and take magnesium flake baths. I try to keep stress to a minimum and try and keep regular sleep but have insomnia and wake from pain.

I would gratefully do any suggestions to control my fibro.

Patrick

[Pallawalla in reply to Hartleyhare2]

Hi Patrick, Sounds like you're doing all the right things. Have you read the book From Fatigued to Fantastic? It has a lot of helpful info. The section on sleep has made a difference for me. I have been taking LDN (Low Dose Naltrexone) and it has changed my world!!! Along with fibro I also have RLS, Hypothyroid and RA.Hope this helps!

Sending you my best wishes!

Pallawalla

[Hartleyhare2 in reply to Pallawalla]

Hi Pallawalla,

Not heard of that book but will get online and find a copy, thanks for the information. I have RLS too plus insulin dependent diabities, IBS and disc problems in neck and lower back. Fibro never arrives on its own it seems to always bring some friends!

I have heard recently about someone else having success with LDN and will be something I shall be bringing up with my doctor.

Best wishes

Patrick

[Docholiday1]

I havent had much trouble since varicose veins were done. This week though two evenings really bad. Arthritis same. Must have some link to the weather. Good luck with it. It can be a living hell.

[Hartleyhare2 in reply to Docholiday1]

Sorry to hear things are playing up for you too. I hope it settles down for you soon. Take care.