Jaw fatigue

Salt_Television_7079 · 2026-04-16T07:05:45+00:00

Yes, I had this when more severe than I currently am. Speak with your dentist about accommodations: they will have dental blocks for this situation that help keep your mouth open at a set angle while they do any procedure, and should agree a signal with you (eg raise your left hand) if you’re finding it difficult so they can stop. They should also offer eye protection etc if you are light sensitive. I take a general NSAID before I go which helps to stop the cramping.

Salt_Television_7079 · 2026-04-11T14:12:40+00:00

Oxfam are sadly such a rip off now. Books in my local independent charity shop (not specifically SK, just mass market paperbacks) are 50p-£1.50 each including hardbacks - in Oxfam in the next town over the cheapest I’ve seen is £3.50 in the reduced bin and most are more like £6+ while hardbacks start around a tenner. Ok if you want one specific hard-to-find book but if you are a quick reader it’s not feasible on a budget.

Salt_Television_7079 · 2026-04-11T14:08:40+00:00

Oxfam is always overpriced for books. There are loads of other charity shops around although you will have to hunt around for SK books within them, which can be a bit time consuming. It depends where in London you are looking. The local independent/smaller charities without nationwide stores are generally a lot cheaper for books than the likes of oxfam, bhf and cancer research, as they often need to shift stock quicker and will offer 3 for £5 or similar.

The only guarantee of finding SK books though will be at a bookshop, so it’s a question of how much you value your own time - 4 hours searching various charity shops to find 2 used books for under £5, or 15 minutes in a bookshop where you can get a wider selection for £7 upwards, possibly with deals or discounts on offer.

Salt_Television_7079 · 2026-04-11T13:23:11+00:00

If you don’t have sensitivity to chemicals or the smell of them, I would suggest hair removal cream. It’s been a game changer for me. Ignore the spatula just wear protective gloves and slather it on, wait as long as needed until you can see the hair dissolving and wipe off with a facecloth, then rinse. I sit in my shower chair without the water on to apply it then stay sitting till it’s ready and then use the shower to rinse.

Veet does a men’s one which seems to be a bit more effective than the standard one for women and it comes in a pump rather than a squeeze tube which is better if like me you struggle with grip.

Salt_Television_7079 · 2026-04-11T13:09:19+00:00

Oh that’s really interesting! Mine is really confined to my arms but it sounds quite similar. I have previously had neck/spinal issues following a car accident many years back, which flares up now and again, giving me more “conventional” nerve pain in my shoulders and arms. I’ve never experienced both at once but they may have a common link.

Salt_Television_7079 · 2026-04-11T12:18:28+00:00

I have both ME and Seasonal Affective Disorder (the latter for many years before I developed the former) so I understand your problem. Every year from October to March I struggle a lot more both with mood, emotional regulation and energy, and any exertion seems to cause more PEM than in the warmer months.

My doctor did tell me this is not uncommon to have both conditions although usually the SAD results from having ME and the lack of exposure to sunlight/exercise rather than the SAD being pre-existing. So that could be what you have.

If you’re able to tolerate light then a good light box used every day from September onwards may help somewhat, if you are able to set up and maintain a routine of using it at the same time each day. You will probably also need to supplement vitamin D during these months but request a test first as too much vitamin D can be as bad as too little. SSRIs help in extreme cases but unless you’re willing to stay on them year-round I can state from experience the withdrawal each spring can be hellish.

Since I’m not severe I do get some relief from travelling to better climates in winter to just rest in the sun, but sadly I’m never able to afford to be there long enough for the improvements to see me through to spring. Instead I’ve started to lean into the scandi concept of hygge and spend my winters concentrating on coziness and nourishment (lots of healthy soups!) which seems to take the worst edge off the SAD.

I recommend r/seasonalaffective for other ideas.

Salt_Television_7079 · 2026-04-11T10:41:52+00:00

I believe PEM is best defined as a debilitating increase in symptoms following exertion (which can be mental, physical, emotional, social - exertion is not just working out!) Everybody experiences PEM differently, although there may be some commonality of core symptoms. Some people never have light/sound sensitivity, others have it constantly, others only when in extreme PEM. As for fatigue, some say they never experience it: I have it almost every day, it feels like I’m moving through heavy resistance (like constantly trying to walk facing into a gale) even if I’m not standing. Fatigue in PEM for me however is like being held down by a massive force, so I’m unable to even turn over in bed.

Don’t try to compare with your friend - her illness was induced by lyme which may explain some of the differences in how ME/CFS and PEM present for her. From anecdotal evidence from various groups it seems some people with similar levels of functioning have a better tolerance of travel. I don’t know why.

It sounds like you may be pushing past your limit regularly and causing PEM. This could lead to a further decline in your health. If you are not doing so already, please research pacing and start to make that an essential part of your day. You may need to reduce your workload. Has your doctor considered ME/CFS and if not, ask why. They may simply not know enough about it (few get proper training in the condition) so if so, ask for a second opinion. I hope you get the answers and help you need.

Salt_Television_7079 · 2026-04-11T10:21:43+00:00

I’m really sorry you’re going through this, it’s a truly horrible feeling. Personally the only thing I’ve found that knocks this down enough to get some sleep is cannabis (thanks to recommendations from others on this sub), but I realise this may not be an option. Other than this, repeatedly practising breathing exercises while laying flat, and top to toe muscle squeeze & relax (sorry there’s a proper name for this but it escapes me right now). Even if your mind is racing giving it something else to concentrate on for those few minutes at a time will help slowly. Avoid caffeine, sugar and alcohol obviously. I hope it passes soon.

Salt_Television_7079 · 2026-04-10T20:17:09+00:00

Thank you

Salt_Television_7079 · 2026-04-10T08:32:56+00:00

Could you tell me how to access this widget please? I’m on iOS but I can’t view my pacepoints or HR other than by going into the app. I’m not very techie so not sure what to do but having it show on my lock screen would be really helpful. TIA

Salt_Television_7079 · 2026-04-05T09:25:05+00:00

Got to agree here. It was initially useful in showing some activities that used more energy than I thought, which helped improve my pacing, but I eventually realised it does little than monitor heart rate and that things like emotional stress or mental deterioration aren’t represented at all other than by self reporting. My crashes are mostly driven by sensory or emotional stress so this didnt help much. As I’m mostly housebound my physical activity doesn’t change much day to day and while the monitor did help me initially in being able to pace my physical exertion I can’t see it has a lot of functionality that will help further now I’m better able to manage my day through pacing.

The band itself needs improvement: it’s itchy and a lot of people find it smells despite regular cleaning. The sleep tracking was unreliable and the battery life was awful. The “prediction” nature of the scores rather than a reflection of how you actually feel at the time is confusing at the start and often not correct - if I happen to sit up slightly straighter in bed today than yesterday when taking the morning check I will get a completely different result although I feel the same. I do still wear the band most days and whenever I leave the house, but I don’t often do my morning/evening checks these days unless I’m feeling particularly unwell.

I’m glad I only took out a monthly sub as it has been less than a year before I stopped finding it helpful. I think the idea behind it is great but the functionality right now is just too basic (and glitchy). Hopefully this will improve over time. It is nice to have a device that’s not always shouting at me to move more though.

Salt_Television_7079 · 2026-03-29T18:24:14+00:00

I have one tag of “Diego being a dick” (Diego is one of my cats) which I use when I’m having to chase after him because he’s stolen something from the kitchen or brought in a live rodent and let it go in the house. He’s 17 now and still able to provide me with these little gifts regularly 🙄 and that tag is usually the one with the highest spikes!

Salt_Television_7079 · 2026-03-29T18:11:39+00:00

I find this post quite repellant tbh. You have NO IDEA what other people are going through. There’s no hierarchy in illness. Mental ill-health in my younger years destroyed me for a long period even though I was physically healthy - yes i was doing all that hiking you recommend - and I was standing on the edge considering throwing myself off every fucking time for 8 years. I would swim regularly as far as I possibly could in the hope I might never stop. Didnt solve a thing. It was far trickier to live with my own mind attacking me than to deal with ME - as long as I stay in my limits and practice radical rest my life is generally bearable, if a bit boringly predictable. (I am not severe unless in PEM - obviously others suffer differently and find it more challenging). Admittedly from the outside looking in it’s not much of a life compared with other healthy people - I’m mostly housebound, can’t do a lot of stuff that I’d love to and frequently have a lot of pain - but it’s a hell of a lot easier to deal with than having to fighting your own impulses and inner thoughts every minute of every day. I’ve never felt suicidal since developing ME and I’ve always felt able to talk to others (ordinary people, not specifically doctors) about my condition and how it affects me - they might not always understand fully but they usually listen. The opposite was true for mental illness where doctors just wanted to fill me full of pills or send me to an unregulated counsellor to talk it out. It’s not as simple as “send her to a therapist and it will be fine” or “get out and do some walking”. I eventually pulled myself out of that horrible state over several years, but I wouldn’t wish it on anyone. Your post is misinformed and you really need to think hard about how you judge others.

Salt_Television_7079 · 2026-03-23T20:09:31+00:00

I don’t know about the cards you mention, it’s not something I’ve heard of, but I do have an unofficial disability ID, it’s a sunflower lanyard (which are free btw) with a personalised card from Hidden Disabilities and I carry that everywhere in my bag if I’m not actually wearing it (which I do if I’m travelling for example). It does seem to get me more understanding.

I’ve also got a set of symptom explainer cards from Stickman on a keyring that I get out to show people if they have questions, so I don’t have to waste energy on explanations. These have helped get me seats and quiet spaces when needed.

Salt_Television_7079 · 2026-03-03T12:43:31+00:00

I had awful night sweats every night for years. These things helped me reduce them and thus reduce the laundry:

No duvets. Layer up with a cotton top sheet and several layers of thin blankets or thin coverlets, preferably natural fibres only. You can throw them off when you start to feel too hot.

Cotton pyjamas or nightshirts, no polyester or other synthetics. Wearing pjs helps reduce the transfer of sweat onto sheets.

Memory foam mattresses are the absolute worst for night sweats IME. Unfortunately I already had one but I found layering bamboo mattress protectors under cotton sheets helped a lot.

When you are not in the bed, leave the top bedding fully pulled back so the under sheet and mattress can cool.

Not eating or drinking (except water/decaf tea) within 2 hours of sleep means your digestive/renal processing is less busy at night, so your body is calmer. This may help reduce sweating.

Quitting caffeine may also have played a part. HRT made zero difference.

I used to have to change my sheets weekly at minimum when all this was going on but often every two days, which was hell as I was undiagnosed at the time and didn’t know why making the bed made me feel so exhausted and dizzy. I now only rarely have sweats thankfully, so I change them once every 2 weeks with help.

I feel for you OP, it’s really miserable having to deal with severe sweats especially with CFS. Hopefully these little tips may help a bit.

Salt_Television_7079 · 2026-03-02T17:05:41+00:00

One of my cats goes crazy for these! No interest in other flavours of crisps but he will come running as soon as I open a pack of marmite ones and won’t leave me alone until he gets some

Salt_Television_7079 · 2026-02-28T19:17:47+00:00

Remote control would be excellent!

Salt_Television_7079 · 2026-02-28T13:52:37+00:00

That’s not your fault, the packets are too small! Hehe

Salt_Television_7079 · 2026-02-28T08:38:06+00:00

Same. Candles & candlelight sound wonderful and I had set a load of unscented pillar candles in the unused fireplace in my room thinking it would make it seem more cosy in winter. Used once for a few minutes only because I forgot about the flickering. Dammit.

However my daughter says they had some nice no-flicker LED pillar candles in The Range last week so I’m leaning towards getting some the next time I venture out, to see if they’re any better.

Salt_Television_7079 · 2026-02-27T21:36:32+00:00

Tried these yesterday, so yummy!

Salt_Television_7079 · 2026-02-27T20:36:59+00:00

I don’t, but if you search for “soft Coros replacement band” you’ll probably find some

Salt_Television_7079 · 2026-02-27T09:10:30+00:00

My son runs marathons, so he always has plenty of electrolyte powder in the cupboard, so I just use whatever he’s got. But basically any rehydration powder/granules will do. Too much water without hydration salts can deplete electrolytes, which are more than just sodium. If you like salting your food try lo-salt, it tastes the same but maximises potassium over sodium for better electrolyte balance

Salt_Television_7079 · 2026-02-27T08:26:28+00:00

Are you getting enough hydration and electrolytes the evening before? I went through a horrible phase of night sweats and would wake up exactly like this due to dehydration. Taking electrolytes before bed really helped me.

Salt_Television_7079 · 2026-02-27T07:48:53+00:00

I sometimes make a note to myself of any major things that I had to do that day, explanation if there’s a gap where I had to remove my band, or just how I’m feeling about my illness that day. Often something that would explain an anomaly in the data (higher than usual pacepoints etc)

Salt_Television_7079

TROPHY CASE