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Here we go brace yourself this is my story.... on good Friday in 2017 I had the worst anaphylaxis you could imagine. I was in recuss for 19 hrs in a life threatening position. From this spiralled a chain of admissions into hospital. 17 to be precise my kids have seen me fitting fainting slurred speech etc and carted off in am ambulance numerous occasions. Now I’ve been fobbed off sent home, I’ve cried and screamed at Drs ( but that’s another story) I had no tests until July when I was rushed into hospital from fitting and losing speech and heart rate over 200 to be scoped down my throat and told the damage from the anaphylaxis was causing my vocal chords to close up and that’s why my speech is impaired etc etc. Well cut a long laborious story short and my I’ll health still progressing we decided to go private to see a neurologist, who may I add is brilliant he booked me in for MRI head spine and neck Ct scan head and tummy, oxford bloods and eeg I am just about to have nerve conductor tests next week and if they are all clear then my diagnosis is M.E These are my symptoms Pain in left side of neck down into shoulder and spine Problems with short term memory Loss of speech Extreme exhaustion when pushing myself too hard Clonus although that’s settled Fitting that’s also settled Trembling sometimes in fingers Struggle to get up after kneeling Dizziness and weakness Mood swings Loss of sex drive Snappy Confused So if anyone out there can offer any help or advice it would be greatly greatly appreciated
I'm sorry you are going through such a hard time, i can't help but I just wanted you to know I've read your post. I myself have been very ill with neurology or vestibular issues that aren't easy to diagnose. Hopefully your tests will show some way to go forward. Hand hold xx
It certainly sounds like some elements are me/cfs.
And it can develop after a traumatic health event.
Short term memory loss and confusion fall under brain fog. This is a horrible part of the illness. It feels like how you'd imagine early onset dementia.
The extreme exhaustion is known as post extertional malaise. It might be worth keeping a diary and seeing what activities trigger this. At the moment it might be just getting on with life - the important thing is NOT to push yourself. Listen to your body and stop before you get tired. I can't stress this enough.
I had lots of dizziness when I first got me, but this has subsided now. Probably because I can manage the symptoms better (mostly!)
Pain is a common symptoms too. This is often widespread muscle and joint pain - that feeling life you've been hit by a bus that you get with flu. But lots of people also getting shooting pains.
The lack of sex drive I think is a side effect of everything else.
You can be prescribed drugs to help with the pain. I'm on nortriptyline which helps with the daily pain. It also helps you sleep giving your body more time in deep sleep which is when your body repairs itself.
It's a horrible, life changing illness that takes a while to understand how to live with it. The important thing is to rest as much as possible and not push yourself beyond what you can manage.
Have a look at the me association and action for me websites.
Did they say ME? I've only heard it called CFS (Chronic Fatigue Syndrome) my medical personnel for years now.
Unfortunately CFS is a catch all term for "you're not well but all tests are negative and we don't know what else to call it". Your symptoms are severe and must be very frightening, but if there is no conclusive findings on the tests they run then it is all they are left with.
As someone who is also likely to get a CFS diagnosis in the near future, I understand your frustration
The sunwillout thank you for that it’s been a nightmare and still is tbh but thank you for your kind words xx HeyMacWey wow you seem to know a lot about it, I’ve been prescribed trazadone so far to help my moods been getting lots of dizziness and going off my feet. My GP says it’s not the meds it’s the condition. She doesn’t want me to have any other pain relief until I see the Consultant neurologist at the end of the month. Do you get a lot of pain in your neck and shoulder that leads into the top of your back. I do and it’s killing me the only thing that helps is a hot water bottle. Thank you truthstar much appreciated. MissWillmottsGhost they’ve only referred it as M.E it’ seems to be what they are leaning towards now. I’ve had this now since last April so tbh a diagnosis would be a relief in a way. (Flowers) xx