Hi all, I know I’ve posted about this before but I swear this is getting worse, and I suppose I need a bit of reassurance that it’s ‘normal for MS’.
I’ve had 3 today. Feels like dying. Really awful. All energy drains out of me. I can’t talk. Can’t move. Feels like I might pass-out or have a seizure (but never do). Can barely keep my eyes open. All I can do is keep breathing and wait for it to pass. Lasts between 5 to 20 mins.
I went out to lunch with a couple of good friends to a pub (drank sparkling water!). Got taken by car. I think it was the excitement and talking that caused the meltdowns. 1 before I went and 2 in the pub. Really awful, frightening and upsetting.
I’m now in bed with general fatigue.
I know I’m not the only one that gets these. I’ve told GP, MS nurse and neuro and they all seem to think ‘normal for MS’ (or PPMS anyway)…
Don’t know why I’m posting really, just need to tell people who understand.
Thank you so much Sarah. It is so scary and nothing seems to help (except very strangely I have found that if I can eat a banana when it’s happening it seems to bring me out of it… so now I try and have bananas on hand!).
Taking it very easy today in hope of avoiding another one. Yes ‘meltdown’ is a good description as it’s certainly not normal fatigue (normal? Huh?)
Your post has made me feel a lot better as your description is exactly what I get and even if I would never wish this on anyone it is reassuring when other MSers (and friends) have experienced it.
I sympathise with you both cos I kind of know what you are referring to. When this has happened to me I explain it as though everything has frozen, and yes it is very scary and 5 - 10 minutes seems like a life time.
It’s an interesting thought about the bananas, I wonder if it anything to do with blood sugar. I only mention that cos I have type 2 diabetes and they have told me if my sugar goes low to eat a banana.
Mind you I dont think we will ever understand ms it is a complete mystery (especially PPMS). I refer to my ms as “my squatter” cos it appeared on my doorstep one day (yonks ago now) and has been an univited visitor in my life since!
HI PAT Sarah and Pam well l hope you are all feeling better to day l to like the idea of eating a banana my gp told me to eat them as my potassium (l think thats what it was called ) was low l used to like bananas but when you eat one every day its hard going. But l will now. have you tryed a wheat free diet. did wonder if that may help
Found this on internet. Don’t think I’d ever be up to the ‘90 minute work out’ (lol) but it certainly does help with fatigue. Worth always having a banana handy!
Pat x
If you want a quick energy booster, there’s no better snack than a banana. Bananas have three natural sugars; sucrose, fructose and glucose-combined with a fiber, a banana gives an instant and sustained boost of energy. Research has proven that just two bananas provide enough energy for a strenuous 90 minute work out.
Hello Pat. I see my fatigue incidents as part of MS. I will always dictate my own pace. I plan for the hectic moments and try to squeeze in recovery time. Life for me is amasterpiece of planning and timing. love, Steve. xx
I thought our Pat was back …just an older link , I hope you are doing okay Pat , I do miss reading your messages. I’ve had the meltdown feeling …is very fightening, I had one as a result of a panic attack, brought on by uncaring hospital staff. About 3 years ago I went for a procedure involving a camera down the throat , I asked for sedation and the nurse refused and told me I’d be fine because the last person was …the result was awful I ended up on the floor and lost all feeling for about an hour. They had to use a hoist to pick me up . That was before they’d even started the procedure, I’d just had the throat spray but panicked because I couldn’t breathe . Needless to say they didn’t even attempt it after that. Michelle and Frazer xx
I thought so too Michelle,that post was 6 yr old lol,they do keep popping up these very old posts dont they? last time she was on here she was busy helping her ‘adopted’ brother.Thats awful the way they treat you in that hospital,it should never happen. poor you dont ever let them get away with it again. J x
No Jackie I won’t let that happen again , although I’m fast losing faith in the hospital staff, The last procedure I had wasn’t meant to hurt …but it did !! How are you Jackie? I often think about you with your family, When things are hard with Molly I always know you’d understand. It’s been quiet on here recently do you think we’ve scared them all away Jackie ? I come on here a lot at the moment , I must be lonely it’s funny how your circle of friends change when you become disabled , I think it’s only on here that I feel people truly understand . Take care Jackie I hope this time of year isn’t too stressful for you. Love Michelle and Frazer 1
Its been quiet on here for a while now Michelle,theres a few i used to like to ‘chat’ with that no longer come on,i think its just the way with forums as it is in life,people are busy with other things going on.I dont get out much these days so i have lots of spare time to frequent the boards.I dont care much for this time of year i can’t wait for the spring and the lighter nights,wont be long now we have the shortest day very soon and then the days slowly start to get longer,my daffodils are starting to come through too that always cheers me up a bit.