New to forum, hello :)

Anniebanani

New member
Joined
Oct 12, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
WA
Hi everyone. I'm Annie, 40, and am looking for a bit of support. As a teenager, I was diagnosed with CFS/ME in the UK. I was managing severe symptoms for approximately 3 years but slowly improved, I'd go as far as to say I recovered almost fully in my early 20s. I was able to manage myself well with exercise and afternoon naps. Understanding my limits, etc.

In that time I've had two children. My oldest son, 20, has a rare genetic disorder, I am his full-time care giver. He needs help with self care, meals, etc. I also have an 8 year old who is remote schooling due to the pandemic (they both are).

I did not respond well to the pandemic initially. I developed extreme anxiety and insomnia for the first time in about 20 years. I fell into depression. I tried medication but felt worse. I started therapy, which does help but is a slow process. My anxiety has greatly reduced and the insomnia happens infrequently, a night here or there.

However, I'm in chronic, intense pain, throughout my neck, head and shoulders. I sometimes feel like all my nerve endings are burning throughout my body. I get a migraine once a week or so. I'm exhausted. Sometimes I don't know if I'm tired and need a rest or depressed and need to do something to counter it. It is scary. I've had bloodwork done which was normal. I take a multivitamin, B complex, D, magnesium and adrenal support as prescribed by my naturopath. I'm in two online group therapies run by professionals. I still exercise with a daily walk and some gentle Pilates and Qi Gong.

I'm struggling with staying positive. How to be a care taker when I can barely take care of myself? This really gets me down. It's like bare minimum, survival in our house. My husband is working from home and he helps as much as he can, but I am struggling to accept my limitations. I know I need to help myself first before I can help my children but I don't know where to begin? How to reduce this stress? Due to my son's health issues we have not had any respite or help in the home, I'm too afraid to expose him.

Does anyone else find themselves in this situation? How are you managing it? I think sleep is a big component. If the pain keeps me awake, or ruminating does, it's a slippery spiral.

I'm speaking with the naturopath today. Hopefully she will have some suggestions. Thank you for listening. I welcome any words of encouragement.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
826
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Annie,
I am so sorry that life is so tough for you right now, and I give you my sympathy. Having to full-time take care of another person when in fact you need someone to help to take care of you must be a great strain, and I admire your determination to manage it.

I have written a post that enumerates all of the things I have researched and found and tried myself that can help with the various symptoms of fibro, and I suggest you read it...link below. I don't know if anything will help, but there are a lot of ideas there you could try.

Nothing, of course, is going to change your living situation, which will remain hard for you. But I think there are ways you can make is less stressful for yourself and I encourage you to experiment and find something that will help you. You are right that you need to take care of yourself in order to be able to do for others, and good for you for recognizing that. You say you don't know where to begin, and maybe my post can help with that.

I think the first thing for you is to do your best to manage the stress, and to accept the situation you are in. Acceptance doesn't mean approval or apathy, but just not fighting it and instead managing what is, the best you can. Maybe some of what I wrote can help with that.....I hope so.
In any case, we are here to support you and help if we can. Hang in there.
Best of luck to you.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Hi Annie, I can relate. I am 47 and have a 6 year old and just "showing up" to care for someone else when struggling to care for myself is challenging. The pandemic has also thrown me for a loop this year. I have managed my condition on and off for many years mostly through patience and exercise and meditation and being gentle with myself but this year has been tough.

A month or so ago I decided to start going to bed ridiculously early. My kid goes to bed at 8 pm and now so do I. I have some PT exercises and breathing exercises I do in bed. I might watch a show while I do them, and usually around 9 I start winding down further. I take some melatonin, I listen to some meditation music and read for 10-15 minutes. Then I usually fall asleep pretty easily.

Before this I was usually going to bed around 11. I am still tired and have pain but I think that giving my body more permission to rest is slowly helping me heal more and more. I think it's the little things, and now I crave going to bed this early! On the weekends I usually stay up with my husband and watch a movie and it surprises me how much my body has adjusted to the extra sleep, like it needs it right now.

Anyway hang in there and try to find little adjustments to make it easier on yourself.
 

JayCS

Distinguished member
Joined
Sep 5, 2020
Messages
161
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Oh how I know all this: Being kept or made awake by pain & ruminating... going to bed earlier... needing more sleep...
I'm so successful getting a lot of the fibro down at the moment, but I still need 8,5-9 hours of sleep, often starting at 9 or 10, and still wake up about 6 times.
But I've got the pains down by osteopathy/acupressure, putting on arnica cream & hot water bottle immediately.
I've got the ruminating down by trying to not read or watch anything before sleep time.
When I can't sleep or get to sleep again I decide whether I'm awake or not. If I'm not, I'll just drowse and count that as sleeping time.
If I am, I get up and take a 1min. cold shower (dim light), that almost always does the trick - takes pain, makes me tired, helps me snuggle back.
This morning was a rare time it didn't make me tired, but that was because I'd already slept 8 hours, so I just drowsed 30min and then got up.
Good to know though, because in 3 weeks when I try starting to work again, I'll have to get up at 7am on one day, which will be tough.
Apart from that you're doing a lot already, Annie, but seem to need more, esp. for your neck, head and shoulders - is Pilates enough? What about 3-4 mins. of back exercises & yoga all day in between, what about getting gentle osteopathy?
 

Anniebanani

New member
Joined
Oct 12, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
WA
Thanks everyone for your compassion and kindness. It helps to feel heard and less alone. My naturopath suggested I might like to try the amino acid 5HTP for mood. My doctor suggested I might try Trazadone for help with sleep and depression. I know not to take both of these at the same time, just trying to decide between the two. I read a book recently on fibro (which I imagine most people here will have read) and it states the importance of deep sleep. It makes sense to me, as this latest health issue was triggered by an episode of severe insomnia. I do what some of you have suggested, I go to bed around 8.30, read a relaxing book, and am usually asleep before 10 and I get up around 6am. I often wake up through the night but can usually get back to sleep.

I like the idea of getting back to massage therapy. I used to go weekly and it helped me so much. Been afraid due to pandemic but doesn't seem like we can change what's happening with that any time soon, so need to focus on treating what issues I have now.

Thank you again. I will keep you updated with progress (I hope!). You're all so amazing for figuring out ways to cope and manage with a difficult situation. It's inspiring.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I am starting 5HTP right now, too, hoping it will help to boost serotonin levels, from the book The Fibro Fix which I am reading right now.

I usually take melatonin at night for sleep. Have you tried that? I prefer to go natural before pharmaceutical!
 

Anniebanani

New member
Joined
Oct 12, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
WA
Thanks for replying Affinity. I did try melatonin. I found 0.5mg helped me fall asleep but I would consistently wake up around 2-3 hours later and not be able to get back to sleep. What helped me break my worst insomnia cycle was a Yoga Nidra meditation for sleep on insight timer. Most recently, along with earlier to bed and reading a book with very little thought or stimulation, I'm drinking bone broth, eating a slice of turkey and a couple of olives around 8pm. Changing my thought attachments to waking up in the night has also helped. For months it gave me anxiety, thinking about how awful I'd feel in the morning. Now I think oh well, I can still rest and can try and nap later. These things don't always work, especially if pain is involved, but I am having less sleepless nights than a couple months ago. I do think sleep plays such an important role of managing the other symptoms.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
It sounds like you are on the journey of figuring out what works for you, Annie. I do take a time release melatonin to avoid this issue you talk about but it still sometimes happens, but not usually. I agree the anxiety about it is the worst part and so we have to manage that, too! But I agree, sleep helps to manage other symptoms and so it's so important we figure that out!
 
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