I have a question about heat and cold tolerance, as I’ve been reading how very often ms symptoms can be temporarily exacerbated by a raise in body temperature.
I don’t have a diagnosis, and am by no means certain I have MS (my mom had fibromyalgia and had some of the same symptoms as me). My question about heat tolerance is whether some people with MS get it the other way around - cold aversion more than heat aversion?
The reason I ask is that for me, cold equals pain, and heat equals relief. If I get even slightly cold I start to hurt, and it feels kind of like tooth-ache in every bone in my body! But if I apply heat then I feel immense relief. And I’m talking about really hot - warm is nice, but nothing feels so good as really really hot water. My partner can’t stand to put her hand in the same temperature of water for more than a second, but for me, pulling my hands out of the hot water is what’s undesirable!
And worse is that it’s not consistent. Sometimes it seems to reverse and I crave cold, while heat causes pain. Generally though it is the cold i have to avoid.
I’ll squeeze in another question while I’m here if that’s ok! Cramps. With no dx my doctor has been very clear about not medicating any of my symptoms, but my lower leg cramps are getting unbearable. My calf muscles just sort of flutter about all day and night - it feels like there are creature moving about inside my legs! And because of all that constant activity I get cramps.
I’ve found one solution which is to wear tubigrips, and it helps a lot, but sometimes it’s just not quite enough, especially when it starts in my lower back too.
I am not diagnosed either, going through the usual rigaramole with tests etc.
I have read so many people suffering with heat, exacerbating symptoms etc but I have been fine with the sun and heat.
I suffered when I was going through my attack. I was so weak when I took a bath I couldn’t get out for a while. But now I am almost recovered the heat doesn’t seem to bother me.
I was at Download music festival last weekend and was basically sat in the middle of a field (albeit with over 100,000 other fellow metal-heads) all day long, got sunburn, but felt fine. Legs ached from wading through the mud all day mind!
I have read about MS messing up your sensory receptors so maybe that’s what causes your high heat tolerance levels?
Affects of the heat or cold varies from person to person. For me it’s not so much the heat but the humidity - I can sit out in the sun til the cows come home providing I’m dressed for it. But hot baths or showers are out, as is having the central heating blasting! Oddly though the last couple of years I’ve noticed that the extreme old can completely wipe me out and exacerbate my symptoms just like humidity does. It’s because we can’t control our bodies temperature so well. But it doesn’t necessarily affect everyone.
Although some GP’s are reluctant to prescribe whilst undiagnosed they can prescribe some meds. Either go back to your GP and impress upon him how bad your cramps are (pester him if needs be!) or give your neuro’s secretary a call and emphasise how bad they are to her.
Quininne which can be found in tonic water is known to help cramps and you can also buy quininne tablets.
It might also be worth you looking at the publications list on here too - there is one on spasticity which might help you. The MS Trust have one called ‘Spasticity Triggers’ which also contains a diary so you can log when your cramps are particularly bad and hopefully find what triggers them.
If it were me I’d get back onto your GP/Neuro for meds though, there’s nothing worse than continuing pain or discomfort.
Don’t worry about the typo Debbie - I guessed you didn’t mean that old people wipe you out!
I’m actually very close to changing GP in favour of one that’s remotely sympathetic! My fear is that you never know what you’re going to get - the next one could be worse!
What about pressure - can anyone relate to this? When I hurt like I’m hurting right now, I’ve identified that sometimes the only relief I can get comes from pressure. That’s why I sometimes wear the elasticated bandages, and I actually said to my partner that what I really wanted was to be buried in sand standing up, with my head sticking out, so I could get uniform pressure all over my body!
I will check out those references you gave Deb, as I’m always trying to record my symptoms to try and identify patterns. As yet I’ve not found any! There are times when going for a walk makes me feel better - but just as many times it makes it plenty worse. Sometimes eating something sugary helps; sometimes not. Sometimes getting too much or too little sleep makes things better; sometimes worse. The only thing I can definitely say is that my symptoms are working very much on their own schedule and are near-enough totally unpredictable.
I say “near enough” because I have noticed that patterns tend to repeat for around 3 to 4 days. If I have a bad morning on Monday, I’ll have bad mornings till Thursday or Friday. I tend to get quite sudden 'switch-on’s, meaning at five minutes to 10 I can be fine, but by five past I’m in agony, and the next day it (pain) will switch on at about the same time, for about the same length of time. I suppose, ironically, that’s almost comforting - to have a rough idea how you might feel tomorrow morning. It certainly helps with planning things - or not.
It’s very difficult to generalise about any aspect of MS.
I am a diagnosed person, but still LOVE my hot baths - as hot as I can stand. This is because I get a lot of joint and muscle pain (which my neuro dismisses as having anything to do with MS ) and find a good soak in the hot bath is one of the few things that brings any relief.
I bath both morning and evening - not only for cleanliness - and when feeling particularly cold and achy, have been known to have one at lunchtime too. Up to three baths a day - no wonder my water bill’s so high!
So don’t assume, just because you read: “Most people this, and most people that…” that your MS (if that’s what it is) has to behave that way. It’s unique to you.
I hate the cold, and especially cold and damp, so this summer, so far, has been a nightmare. Always aching and crampy. I look forward to a bit of warm, dry weather, to ease my aching bones.
As Debbie has said, I think humidity affects me worse than just heat by itself. If it’s hot, but dry and clear, I will feel quite comforted by the warmth. But if it’s muggy and oppressive, I find it debilitating.
That seems to be a fairly standard view - that joint and muscle pain is not a direct part of MS. This is why I still wonder if I have actually got fibromyalgia, because with that the primary symptom, as for me, is pain. But I get so much happening that my mom never had - her only symptom was pain. I get that, and vertigo, tremor and twitching, cramps, parts of my body that seem to have a will of their own - so many different symptoms that come and go that I can’t even remember them all!
Waiting lists is another thing I wanted to ask about. I was referred to the neuro 14 weeks ago and still have no appointment. I called on Monday and was told there are “still several people ahead of you on the waiting list who’ve been waiting considerably longer” – suggesting I still have considerably longer to wait.
Is this a fairly typical picture for most people here? I asked my GP a couple of weeks ago to refer me privately but he said I’m better off waiting. Now that I know I still have a long wait, I’m planning to see him again next Monday and insist on the private referral.
Hi justdave, I’m feeling pretty poo at the mo so this isn’t as an extensive reply as I would like. I just wanted to make you aware that over the weeks I have read several posts about people getting diagnosed privately but thus seems to cause untold problems further down the line with regards sharing results and meds etc. It may be worth you writing a post on here specifically on nhs vs private and make your decision then. Have you thought about telling the hospital that you’re prepared to accept a cancellation appointment at short notice? Sometimes this helps but only if it fits with your daily schedule of work etc. I wish you well Mandymoo
Waiting times to see a neuro seems to vary so much .I think that 14 weeks is a long time though.Id be interested in how quickly things could get done privately.
I feel lucky that once my gp referred me i got seen 3 weeks later by a neuro.I chose not to go to my local hospital as the wait was 4 months so i am going to a hospital an hour away ,but id rather that and get seen sooner .Im having my mri tmw 2 weeks after seeing him .Now that ive said how quick its going it will prob take 3 months for the results ! Not sure how long the wait is for them ? im hoping not to long .
I personally dont get alot of pain .With me its more aching really .My legs ache so much at times that if i dont rest they feel so heavy and dreadful .I got a lot of shooting pains though and they hurt .
I’ve not been well for over a year now - both ms and non ms related - so I know that’s part of the reason that I feel so cr*p. But I also know that come Wednesdays my fatigue and all the other symptoms are a lot worse and from there it goes downhill. But it can vary.
I work full time and my job is full on and stressful - which I know is not ideal for an ms’er. By the time Friday comes round I’m completely and utterly done in and Saturday is a complete wash out. Sundays I sometimes feel a little better and if I have a week off for example as the days go on my fatigue lessens to a more manageable level. But again, this isn’t always the case
So my point is, for your own benefit make a note of when you’re feeling particularly rubbish, have you overdone things leading up to it? Normal things like colds & infections can have a dramatic effect on our symptoms and can be a lot harder to shift than the average person too.
It’s very difficult to pinpoint any particular trigger because the symptoms can be so sporadic but it’s worth a shot. When you do see your neuro though take a brief list of your symptoms rather than your diary - the neuro is less likely to go through a wad of info as time is limited. Brief, concise but without missing anything out.
I am currently a limobland’er’ and before I even knew that my Neuro suspected MS I had a 2 week holiday in Egypt in April and my tingly/over sensitive hands and fuzzy legs just dissappeared. I honestly thought what ever it was I was experiencing (I thought perhaps a trapped nerve) had vanished until I returned home and the cold and damp weather brought out my tingles and numbness.
Perhaps I should emmigrate somewhere nice and warm
I used to really suffer from the cold - I was so cold when I came in from work that the only thing I could do was have a really hot bath. Now, whilst I still love a bath, it has to be coolish, and afterwards I am worn out. I always turn the shower temperature down from what my husband has it at, hate having the heating on and can’t even wash up the dishes in hot water (thank heavens for a dishwasher!). I’ve been to Spain several times recently and whilst I don’t manage the heat as well as I used to, the dry heat is better than humidity but the best thing is getting in the unheated swimming pool - heaven!!!
What is it that causes problems with temperature? I’ve read of people saying they have problems with temperature control but don’t really understand. Can anyone help?
I find the docs dismiss all this with me - I’m female and 50, but I’ve also been told by an endocrinologist that I’ve been through the menopause.
For me, cold = pain and heat & humidity = exhaustion.
I don’t think the cold thing is because of my MS though because I was the same as a child, but it is possibly worse because of my MS.
Re your cramps: there are loads of things that could be causing them, but for your GP to basically wipe his hands of the problem is not on. Has he had your vitamin and mineral levels checked? (For example, low vitamin D3 or magnesium or a lot of other things can cause this.) He is obligated to do something about it if something shows up. If nothing shows up, then he CAN prescribe something like baclofen (a muscle relaxant) no matter what he claims. Granted, there are some meds that should only be prescribed when you know the condition causing the symptom, but there are plenty that are OK. If your GP won’t help, then it’s definitely time for a new one!
Re pressure: if your symptoms are neurological, then pressure could be helping by giving the brain something else to pay attention to. Basically the brain is limited in how much it can do at once plus it pays attention more to the most prominent stimulus. So, e.g., if you have a fake burning signal, applying ice packs gives the brain a strong cold signal which can effectively drown out the burning signal.
Re going private: you can usually get an appointment within two weeks or so. If you go with someone who also has NHS clinics in that area, then you should be able to be switched to those quite easily. Quite a lot of people do this.
I find that cold air is quite refreshing though .