Hi, my wife was diagnosed around 6 years ago with relapsing remitting MS. Over the years it has developed into “primary” MS. She has several issues related with the disease all of which are debilitating.
Of late her fatigue is getting worse, initially she would sleep all day for maybe once or twice a week, now she sleeps for 20hrs per day 7 days a week.
Both of our qualities of life are non existent and we are literally living / surviving from day to day.
Has anyone else had similar experiences, if so what did you do to help them?
Your thoughts would be appreciated.
So sorry to hear what a difficult time you both are having. I don’t know if this is any help. I started taking high doses of Magnesium Citrate (600mgs) and B2 (400mgs) a day for migraine and I find that it helps with energy too. It might be worth a try, I don’t think they’d do any harm. I understand that the dose matters, lower doses don,t have the same affect. The B2 turns your wee bright yellow - so if your partner decides to try it don’t worry. Hope things improve for you both
Hi @tonywinpenny74… I feel for both of you, your wife is on the one hand so overtaken by ms that she sleeps most of the day and you well it sounds like you are locked into being very much the Carter.
I am no expert, and apologise if I suggest anything that is something you are not ready to hear but…
If your wife is sleeping so much would some respite help perhaps someone coming in to allow you to go out and about. I know I don’t know your circumstances but you do need to look after yourself so that you can be there for when you wife is awake. Take care, you both are in my thoughts x
Hi I am really careful what foods I eat because if not I could sleep all day I follow the best bet diet no gluten,low sugar, also I try to never fall to sleep during the day if I do it’s like I have been drugged if I do feel really fatigued I go outside or exercise which wakes me up,I do realize everyone is different, is your wife on any medication? because it could be that what’s making her sleep all day
I want to thank everyone who has replied to my issue, I take on board everything that has been mentioned. I can not see how effective rest bite is as the issue is still there if you are there or not, maybe I am wrong saying that, thoughts would be appreciated. I will ask the hospice and care staff about the medication that has been mentioned, I don’t know maybe it will help, nothing ventured
My wife’s fatigue is so extreme it’s not just a quick shut eye to recharge the batteries after seeing the grand kids or preparing a meal, it is constantly in her face it is so debilitating and it is getting worse, if that is possible.
Our whole life has changed it’s not what we planned for when looking forward to our retirement.
I read about people with MS who lead a near normal life, I get comments from people saying “ it’s only MS what is the problem?” Ignorance is such an easy shield to hide behind, if only ignorant people could experience a small percentage of what my wife and I are going through they might think twice before they start preaching.
Tony
sorry to hear whats happening, the most I have slept is 2 days straight, I’m wondering if its her meds they might have to change them, I don’t know if this will helpd try going out for short walks together I know its going to be hard to encourage her, just start with a walk down the road or around the block, when you come back in she might be really tired but least you had a bit of time walking together.