Another ME Awareness Week post, and I realised that I haven’t actually said what ME is in this week. I think I did a post about it last time, or early on in the blog, but I thought I’d do a post about some common symptoms as it isn’t just the chronic fatigue, which is probably the most obvious to anyone who knows people with ME or who has heard the other name Chronic Fatigue Syndrome.
I think that a large percentage of people with ME tend to first become ill with ME after having some kind of infection or bug, it seems a lot of people I have talked to over the past twelve eleven and a bit years seem to have had glandular fever but it’s often after a time when your immune system was weakened due to illness. There are lots of debates and different research reports out there about the various reasons why certain people get ME when others don’t but no one can agree really so I’m going to stay away from all that and suggest you look up for yourself if you want to know more, there are new theories popping up all the time.
As this is sort of medical in a way I’m going to give the same disclaimer I do before anything that might be related to that in any way and say that I’m not in the medical profession, I have never had any medical training and this is all from personal experience or things I have read or heard from other people.
The most obvious symptom is probably the fatigue, it’s one of those base symptoms that can be used for diagnosis though it is a symptom for a lot of other things too. It’s not just being tired, it’s your body feeling heavy, that sort of feeling you get when you’ve done a cross country run the day before in school and your legs feel like they’re made of lead, it’s hard to lift your arms and your body just hurts and doesn’t feel like it has the energy for anything. But instead of running a long distance you’ve just climbed some stairs, been out in the garden or even just sat up if you’re severely affected. I think this is probably the most obvious to people who don’t know you if you have ME, it’s one of the ones that has the biggest effect on what we can manage but it’s not the only one.
Flu like symptoms is probably the most generic description you can get when it comes to symptoms but it’s one that’s given a lot when it comes to ME. These seem to vary quite a bit person to person and I guess the fatigue itself can fall into this too as that is a big part of flu. There’s also the headaches, sweating, sore throat, aching joints, stuffy head and all of those fun things that don’t seem like they really go with just having done something but they normally appear, for me anyway, when I’ve done something more. The sore throat and losing my voice is the big one for me, I always got that after handing in an assignment, going away on holiday or anything that took more energy than I should have spent on it. Also flu remedies do not help with them, it’s not an infection and throat sweets don’t seem to do much with soothing it for some reason. The only one that does at all for me is the Lemsip type drinks, though that might have more to do with the paracetamol in there than anything else.
I guess that kind of leads onto the pain, and it’s often a pain that doesn’t get helped by any of the normal pain killers. There are some painkillers that do work, unfortunately doctors won’t prescribe them to me because of other health problems I’ve got but they are available if you can have them. I have found that over the years as well as it getting better because I am recovering slowly, I also find that my pain threshold has improved a lot. I don’t know if this is really a good or bad thing but it’s like you live with it for long enough it becomes a background thing unless you do too much and then it shows up again, though slightly dulled compared to what it would have been.
One of the ones that causes me a lot of problems at various times is when my internal thermostat pretty much goes haywire. I’ve been sat on the beach in Italy when it’s over 30 degrees C with a jumper on but in the winter I can go out in the snow in just a T-shirt and still feel warm. I don’t know how much it effects other people but I know that my body does not deal well with the heat anyway so if I feel hot it starts to overheat and drains so much energy even if it’s not actually hot. I always make sure I wear layers because of this and I have thrown out so many long sleeve t-shirts or woolly jumpers because I just can’t wear them or I overheat even outside.
Sound and light sensitivities are big ones for people with ME which I have, fortunately, escaped so far. I do have a slight sound sensitivity and it does get worse when I’m exhausted but not to the level of a lot of people I know where things like a rustling paper is painful to hear or having to wear sunglasses in a darkened room. I do have a slight sensitivity to light but it’s only really on bad days when I have to close the curtains if it’s really sunny or I wear sunglasses outside when I wouldn’t have before I had ME. I know this can be a very severe thing for a lot of people along with a sensitivity to smells though I know less people affected by the smell aspect or maybe it’s something that wasn’t discussed as much as there aren’t many solutions for that that I know of.
Brain Fog is another big one, I actually almost forgot this and had to add this in at the end, where basically your brain gets foggy, hence the name and a lot of the time it shows as forgetting things. I often find it’s simple words, things I know and have known for ages, it’s like when you see an actor and you can’t remember their name and it bugs you for ages but you just don’t get it and can’t get it out, it’s that sort of feeling. There’s also brain fog moments where you do something a bit daft, like trying to see if a mug is dishwasher proof by turning it upside down with a bit of tea left in it, or making tea without a tea bag, both of which have probably happened more than they should for me. I have done a bigger post on brain fog here if you want to read more on it.
Balance problems seem pretty common as well, the light headed dizzy feeling sometimes hits at odd times and you end up walking around and looking like you’re drunk or walking into things. I have found quite often that my depth perception goes a bit wonky if I’ve done too much which ends up with a lot of things getting knocked over or missing a door handle and hitting my head on a cupboard. This is one of those that seems to come and go pretty suddenly for me and it’s a bit odd, it doesn’t seem to have any specific thing that sets it off like others but it doesn’t really cause any major problems. The dizziness and balance are bigger as they don’t exactly make it fun when you’re trying to walk anywhere and stairs are impossible, I have ended up crawling if it’s really bad when I’m at home.
There are others that I haven’t had problems with, or I did at the beginning but they haven’t bothered me recently. One of the fairly big ones there is nausea, it was one that affected me at one time but it seems to have got less. Restless legs seems to be fairly common with people I have known with ME though I’m not sure if it’s considered linked or not. I’m sure there are more but I can’t remember them.
Alongside all of the symptoms I think that a lot of people with ME tend to find that they also have other chronic illnesses, some seem pretty common amongst people who post on ME forums, though I know this may just be because they’re the ones who actually post a lot and those without don’t post saying that they don’t but it’s not uncommon may be a better way of saying it. It seems that POTS, Postural Tachicardic Syndrome, seems to be pretty common where your circulation doesn’t work so well when you’re stood up, I have done a post about it here for more information. Another that I was surprised to find was fairly common for people with ME is post prandial hypoglycaemia, where your blood sugar drops for no reason a few hours after you eat. Irritable Bowel Syndrome and food intolerances seem to be pretty common as well. I know that genetically I was more likely to have a problem with gluten and dairy, both my parents’ families have a history of them, but it wasn’t until I had ME that they became more obvious so maybe it’s more that if your body has a slight intolerance it becomes more pronounced, I don’t know really and there are so many theories behind it that I’ve found over the years.
There are also other things, I guess they could be considered side effects, things that I wouldn’t have thought of before actually becoming ill but they’re things that I know people with ME, and probably any chronic illness that effects movement, are affected with. Muscle wastage if you’re severely affected can be a problem, if you’re bedbound then you can’t do much to keep the muscles going and become weaker because of this. Weight gain, or loss, is another problem as it’s hard to control your weight when you either feel nauseous all day and find it hard to eat or it’s too much energy to sit up and eat regularly or if you can’t do anything but still need to eat so you gain weight and can’t exercise to lose it.
I’m not sure where to write about this as putting it in any of the categories feels a bit odd but I know a lot of people with ME who have suffered with depression. I don’t think that I ever was depressed in a clinical sense of the word though I have been down, especially when I was first ill and it was all very confusing and isolating when there wasn’t a name for it. But I do know that clinical depression seems to be fairly common, or maybe not uncommon may be a better way of putting it, with people who have ME. It’s not hard to understand why when you’re too ill to do anything and you’ve lost the life you had before, especially when you’re very severely or severely affected and can’t do anything, it’s a very lonely feeling.
I’m sure that there are probably things that I have missed off, I know there are definitely medical and physiological things I haven’t posted about, changes that happen because of ME, maybe I’ll do a post about that too as I was surprised by some when I read a leaflet that an ME specialist gave me recently. I just realised how long this post has got and it was meant to only be a fairly short one with bullet points.
Anyway, I hope that you’re all as well as possible and maybe this has helped someone. I am planning on doing more ME posts for the rest of MEAW but I will do one, probably on Wednesday, about ME bloggers as I’d like to raise awareness of the people with it as well as the illness itself if that makes sense. I’ve done a proper post about it here but if you want me to include your blog or know someone who you’d like to me to link to then please either leave a comment or email me on firstname.lastname@example.org