Club Bed: Happy New Year Beautiful... - Myalgic Encephalo...

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Club Bed

PaigeyPaigeForLife profile image

Happy New Year Beautiful People!

I have been living wirh chronic fatigue since 2013 and still struggling

I have been in bed on and off since last year October, more in bed than off. This is terrible, i struggle to make my bed, clean myself, prepare and cook meals, i have an active 15 year old and most times I'm unable to take her to her activities. Her friend's mom help with transport when needed.

I don't have much joint pain but sometimes I have pain in both my hands and my right knee has started to really pain since last December. My head feels funny, I feel nauseated, very weak and I slow down a lot! Staying in bed is best for me.

I try to get up and do things but I have to rest a lot even driving is a struggle. This year will be nine years with this. I take magnesium citrate , probiotic, 1000 IC units of vitamin D and collage. I also have PKD, I also had breast cancer surgery last year with radiation treatment, not forgetting good ole menopause 😏 I am tried but still thankful for life.

I have named my bed, Club Bed with Dj Pillow & Blanket. My faith keeps me from getting depressed and keeping my anxiety at bay.

My name is Paige

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PaigeyPaigeForLife profile image
PaigeyPaigeForLife
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6 Replies
Jjflash profile image
Jjflash

Hiya paigey page,shame you're going through poor health for a long time.Your issues are complex and plentiful and they're individual to you.A couple of things I can suggest are a massage gun to ease the pain in your hands,knee etc as you don't wanna take more tabs than what you're already taking.with your sleep,it's a horrible thing cos when you feel so tired after sleeping the standard 6-8 hrs,you obviously still feel so shattered that you nod off again.Its horrible,I bet you feel lethargic during the day too.Hopefully,you can change your patterns of sleep for a few consecutive days where you hopefully get a standard say 7 hrs sleep nightly and no more.Its so difficult to suggest anything else cos this group of issues are only individual to you.I hope you get a bit more peace in your life cos it sounds like a few less issues would improve your quality of life a bit at least.gd luck with your probs pp and hope you get better real soon

PaigeyPaigeForLife profile image
PaigeyPaigeForLife in reply toJjflash

Thanks for replying, I will get the massage gun. I take Jynarque, this meds slows down the progression of PKD, i have to drink at least 5liters of water so lots of bathroom runs added to me getting up with menopause night sweats, i don't sleep well at all however i do get some during the day although not much. One day at a time.

Jjflash profile image
Jjflash in reply toPaigeyPaigeForLife

It's a orrible cycle paige.you sound very brave inspite of everything.I don't know where you live but dyu live near a pain clinic or something similar where you can see a different medic besides your gp where you can ask someone qualified to possibly assist you with your complex issues,with maybe some physio type of help,anything to give you some more peace.btw,the massage gun should give you more flexibility in your body.gd luck

PaigeyPaigeForLife profile image
PaigeyPaigeForLife in reply toJjflash

I'm in USA, I was in pain management years ago for my kidneys, I've since had two procedures done to help with the pain, I was also in therapy for depression and anxiety, i had meds again, after living like a zombie, i weaned myself of those meds just to feel like myself.

Because of my kidneys i can just take most meds only that which has been prescribed. I stay positive by praying and listening to bible based meditation, its not easy but i remain hopeful in spite of.

Thanks for replying and have a restful night.

I read up on this test but I don't think it has anything to do with my present issue. Have you had this done and if so for what issue?

Thank you for the information but i have to be careful, I also have Polycystic kidney disease and I'm presently taking meds to slow down the progression of the disease. I test every month to be sure that my liver is not being damaged. I will have to discuss with my pcp and Nephrologist about this.

Again thanks for the info.

Since 2013 I have been tested and its 2022 and i am still being tested and seeing different specialist and no real results, I have been taking supplements by my pcp but we always have to be mindful about my kidney disease.

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