With symptoms it can be difficult to sort out ME relevance given the huge heterogenity. My daughter has had some symptoms which are worsening which prompts a reconsideration. There is a decline , and it may be that this is simply part and parcel of that, or something that requires medical input . Medical input is difficult as no GP visits, hospital visit would knock her for 6 ( still recovering from a podiatrist 15min appointment last week) Pain is increased - this seems to be largely muscle pain - muscles "seize" ( most often in neck but also legs and rest of body) Headaches getting worse ( may or may not be related to neck muscle issues and jaw issues) Dizziness getting worse Eyes feel huge and as though being gouged out General feeling of "not enough blood in brain" Cognitive and co-ordination declining. We did have an active stand test referral ( for OI) but can't attend. The head and neck issues make the Braglee paper interesting, and but my GP may well attribute this to psychogenic manifestations, rather than any investigation has anyone experience of any/ all of these, and is it associated with a dip? thoughts?
If someone is bed bound, it may be that gentle physio to mobilize joints and stretch muscles may help reduce tightening of muscles. @PhysiosforME may have some suggestions. The next bit may have no relevance to your daughter, @Amw66, as I don't know what if anything she is able to do in bed. I find the more I use my arms/hands, even just my fingers, the more pain I and tightness I get in my shoulder/neck area. I discovered that lying in bed and doing even tiny hand actions like doing jigsaw puzzles on my phone, which required lots of tiny finger movements, or doing puzzles like sudoku with a pencil while lying in bed, triggered a chain of migraines and non migraine headaches with pain in the back of the head/neck area. Providing my arms are well supported, I can tap on laptop keys, or on a touchscreen and not trigger so much pain across shoulders and neck, but any action that requires sideways movement of the fingers, like dragging a jigsaw piece across a screen, or writing on paper, especially if I am lying on my side, sets off the neck related pain and headaches.
My youngest daughter has EDS and severe POTS and struggles with neck and shoulder pain, as do I (I have severe ME), and we both find that taking large magnesium supplement doses (I take 3x 1000mg a day) makes a huge difference to being able to soothe tense and exhausted muscles and stop them from spasming, thus causing nerve entrapment and even more pain. My daughter also swears by the magnesium phosphate tissue salts for quick relief, she says they can stop a headache coming on when her neck is particularly tight and also help with the sciatica she suffers from as a result of unstable hips (joys of dodgy genes). OI symptoms can be brutal. My daughter has had heart rates of 180 to 200 when upright on bad days and is often found on various floors around the house or halfway up the stairs where she’s just been overcome with dizziness and had to sit or lie down. I’m so sorry your lovely girl is so poorly, it’s very hard when your kids are so sick. All my three have major health issues of one kind or another and it’s not easy dealing with it all. My best wishes to both of you, and @Trish and her daughter too, and I hope you get some answers very soon.
i have had all these symptoms for many years i have always put them down to overdoing things of course later i learned about pem the huge swollen eye thing has bothered me from the outset of my m e thirty years ago . i hope your daughter sees some improvement soon .
Swollen eyes is what it feels like when I have a cold coming on - as though they're too big for the sockets. But the "gouging-out" bit is a new one to me.
Sounds familiar 20 plus years ago thankfully. Agree the gouging sounds odd but I can recall feeling my eyes were being pressured to pop out and pain to their sides. Desperate times, can I suggest wheat and dairy free, no tomatoes or coffee plus try tick tock tea as it’s anti inflammatory tastes awful so buy a small box. It was recommended to me by Cfs clinic so others must have had benefit. In my case I felt slight improvement after 3 days of this. Agree with the magnesium suggestion. Also Epsom salts magnesium sulphate I think, in hot steamy bath. Pure guess, as you don’t list sinus or ear issues have you considered allergy as the seasons change? Our gp does video and phone consultations and face to face if they see fit so worth a call As it’s difficult to manage totally alone for the whole house. Hope your daughter improves.
I'm 100% bed bound, back in 2016 a physio gave me exercises (which I did for fear of being sectioned again). The exercises made me indefinitely worse, my wrists never recovered and I eventually lost my ability to type on soft laptop keyboards.
Sorry to hear how much your daughter is struggling. We would always say that any change in symptoms should be checked out - most GPs are doing video consults now or have an option to ask for online advice (I would go for video if you can). I frequently book an appointment in my son's name and then talk to the GP about him so your daughter wouldn't necessarily have to speak. @Trish makes an interesting point and one we are finding more and more - good supported posture seems to be really important even in lying. We are trying to pull together some information on this and will share once we have it. Hope that helps and things start to improve
I'm using the magnesium phosphate tissue salts, too. It really helps my sleep along with calcium phosphate tissue salts. I also take a dose during the day to help with stress.
Any recommendations re magnesium.phosphate salts - there seem to be a lot if brands / varieties Brand without lactose?
