Winter sees a downturn for my daughter and she is having real issues with muscles - this post is to sound out how " normal" her experience is for ME, in case it's not! i have managed to organise a GP home visit next week which will deal with this and some other issues, but any info gratefully received as GP not very knowledgeable but will facilitate referrals if needed. Muscles have grown very tight generally - to the extent that stomach muscles are so tight she cannnot physically be sick and peeing can take ages ( as can stools) Muscles seizing , particularly neck , happening more often and both sides at the same time. Facial mussles are tight which is affecting jaw/ ear/ nose and increasing pressure in head - so feeling of nausea worse and pressure in head increases when ear is on pillow and hearing goes, dizziness increases. Cognitive mpairment getting worse but varies All in all pretty crap - but is this all an ME thing? thanks for any heads up
The problem is that we don't yet understand ME, so we can't definitively say that some symptom is or isn't due to ME. I haven't heard anyone report tight muscles as an ME symptom, but that doesn't mean that it can't happen. Hopefully the right specialist will be able to figure out why the muscles are tight.
I've never had anything that severe. I have involuntary muscle tension, which is worse in the cold. Because I can't fully release my thigh muscles voluntarily, I get pain from 'overusing' them, even though I'm sitting down and relaxed. It's a low-level tension, though, which can be released by massage or warm water. It sounds quite a long way from the type of spasm you describe.
Thanks Kitty It was similar to your description , and there is a baseline which ramps up from, but it is getting more acute and baseline has shifted too. Heat does help , but now have " toasted skin syndrome" from the hot water bottles on neck and stomach - and heat does make you overheat. A conundrum - I just wish there was a bit more curiousity in primary care.
Yes, muscle tightness is a symptom for me. It was one of my earliest symptoms and one if the most problematic along with cognitive issues. I had problems all over. My face and neck muscles caused quite a lot of pain and, for quite a while, I ended up feeling one side of my face was disconnected from the other. I had a lot of pain in the intercostal muscles, the back, abdomen, buttocks, upper arms and thighs. Even muscles in the hands and feet. Working with a very good physio, I realised that, even though I thought I was relaxing the muscles, I wasn't fully releasing them. Imagine one if those relaxation exercises where you tense the muscles up really hard and release them. Now imagine when you release them they only release by maybe 50%. Then do this repeatedly. You know that stress position where you squat against a wall? It felt like that but with muscle groups all over the body at the same time. I did have some vitamin and mineral deficiencies, measured by blood tests and we rectified those. At the same time I had physio - no GET. My physio was hugely helpful and through her I realised that when I thought I was resting, my body wasn't supported enough and so the muscles can't release. I couldn't tolerate touch, especially on my upper arms and thighs. Someone laying a hand on my arm hurt. Before being ill I had regular massages and loved them, after this developed a massage would have been unbearable. The only person who could touch me and move my limbs around without hurting me was the physio. Is that because of ME or some personal quirk? I don't know but I didn't have this problem before ME and I used to exercise, including muscle toning and flexibility exercises regularly. Another issue that might compound muscle pain is hypothyroidism. One of the signs I need to increase my dose of T4 is when my muscle pain suddenly increases. Well worth a blood test just to check, especially if they'll draw the at home.
Just a suggestion, as it was the cause of my muscle problems - is your daughter getting enough salt? PwME often lose a lot of salt in urine, and in my case it was very severe. I make sure to have plenty of sodium now, some in the form of sodium bicarbonate.
Hi @Amw66 So sorry you and your daughter are having to deal with this. I was wondering about Fibromyalgia. I can't recall if FM includes tight muscles. Hope you get some answers and help!
Losing lots of salt ,interesting; can't recall if I've read this before. In the dark recesses of my memory, I think I had a test that, despite using a fair bit of salt, I was told to use more. Thanks @MeSci
She does use extra salt, as some OI issues , but as everything is going out of whack it may not be enough. As GP will only do standard blood tests, I don't know to what extent things will be picked up.
I don't think the experiences of other PWME are relevant to your daughter's problem @Amw66 - she needs medical help. Nobody may be able to provide an answer but whether or not other members have had similar experiences is not relevant to her medical care.
Thanks @Jonathan Edwards, this particular issue has been raised for some time in phone consultations to no avail: at least I have managed to argue the case for a home visit this time which should hopefully help. When you are disbelieved regularly it is sometimes good to know that you are not a complete outlier Though given past experiences with medical encounters it took a lot to persuade my daughter. Hopefully there may be a more positive outcome.
I hope you get some answers for her @Amw66. From the sounds of things her ME is a lot worse than mine. My pain is better controlled these days but it's a horrible, horrible way to feel.
Thank you. This winter is a struggle, but she remains stoic . If we could improve one thing, that would be a great result .
My GP gave me diazepam to try but it did nothing. I couldn't handle amitriptyline side effects. Or any SSRIs or NSRIs at low dose unfortunately.
