Exhausting: Hi all.. what to do. I have... - Fibromyalgia Acti...

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Exhausting

JoQueenie profile image
15 Replies

Hi all.. what to do. I have no trouble falling asleep but its keeping asleep. I wake around 4 times a night every night and I'm exhausted. My pain from fibro and arthritis wakes me as my body hates being still. I'm in agony when I'm woken up and try to move that I end up getting up and moving around to release muscle tension. I dont want any kind of sleeping tab or anything that makes me dopey as that doesnt solve waking issue. In fact it makes it worse as if i sleep like a dead lion i then have more pain. What on earth is the answer ! I'm pretty sure there isn't one but wanted to just put it out there as you guys or someone will get me. Thanks all x

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JoQueenie
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15 Replies

Hi

I really feel for you. I have pain 24/7 due to my many conditions. I have an hour or less sleep per night due to pain so I do know how you feel, it's horrendous. The pain meds I'm on are zomorph, oramorph, nortriptyline, codeine, duloxetine and indimetacin. These just take the edge off so that I can get out of bed in a morning. I have an electric blanket, hot water bottle and naipo portable seat cushion with vibration and heat, it's great, it really does help. Please take care Lynne

I have same from ongoing stress I actually just pass out then wake up. I have to try to walk some days I can’t get out of bed. My psychiatrist is actually stressing me out. I’m finding if I eat meat at night I don’t feel good so I think I’m going to stop eating meat at night because not enough oxygen to tummy I can’t handle fats at night. I seem to every other day. I really have to meditate a lot I don’t enjoy it but I do it. Sometimes to just listen to thunderstorms or relaxing music. I had to do it 4 hrs other day. I over did things me t day walked too far too weak. I know when I helped my dad through cancer I’d go visit horse and just pet them by my place I moved since then. It really helped. I miss eating regular foods drugs used to help until they caused my stomach stress when I was stressed. I think just trying to get right blend of calm amino acids and letting go of the pissed off this is going on maybe the hormones will return and sync. I use heat as well and lay on the floor legs pushed against wall. I contract my body& release. Sometimes rapid deep breathing helps too. And I sleep in my bed or couch wish had a lounger. I’d love some morphine but in my case just slow down metabolic state in guts. I hope you find your groove it’s rough.

Painny profile image
Painny in reply to

It’s sad but true that there are so many facets to fibro. I cut down on meat especially red meat which is my no.1 enemy, I have so many number ones ☹️ In order to get B12 I eat red meat 3/4 times a year but I suffer the consequences for weeks. Yesterday I had Big Mac and still sick to stomach and my brain cells are like tornadoes moving around rapidly. I took Part of Zoonies advice by rubbing a drop of cbd oil on my forehead. Surprisingly, a bit better.

So it would help if you cut down on red meat, and gluten. Today I bought gluten free basmati rice from Tesco.

So good diet is key to improving the overall health x

in reply to Painny

I can’t even eat chicken now. It’s what I eat 90% time for protein and I eat very little gluten. I do brown rice for the fibre. I was reading rice packages other day and wild rice is full of nutrients where the rest so are not. It’s expensive though I bought some on sale I may look online. You should check out the difference! I take b complex vitamins & did you know you can go to pharmacy and ask for b12 otc and buy syringes and alcohol wipes and give yourself injections?! It’s not very expensive either!

I know it’s pricey but at specialty meat shops you can buy buffalo/bison meat and honestly the burgers are even better tasting & better for you !! I treat myself once in awhile place by me sells individual ones costs me$6 to make one for mysekf at home but it’s a nice change. Yep McDonald’s makes you feel sick I think too with that gluten right?!! I can’t eat dairy right now at all not in like 7 months. I use fortified vanilla rice milk it has more nutrients than the other pseudo milks out there. I do eat oatmeal not gluten free but oats are usually gluten free but made around gluten stuff so I risk that. And use thick brown rice cakes for lunch with tuna & sprouts. One thing I know is no fats no sugars so upset it took me years to get my body bowels to work right again only for meds then stress to mess it all up again & pricey probiotics all the time it’s killing my bank account not be like this.

Gooddaysagain profile image
Gooddaysagain in reply to

Have you tried baby formula?

I know it sounds odd (and has TOTALLY freaked the type of adverts I get on-line), but I was researching supplies of Galacto-whatsits [Galacto-oligosaccharides/GOS], the milk protein-based pre-biotic which, according to research, makes a better home in our gut for the probiotics that work best for us.

I found an infant formula, by Abbot Labs, called "Similac - First Infant Milk" that has a really good balance/range of nutrients, Vitamins, minerals and (even some of the amino acids) needed for early development.

This formulation has NO palm oil. (Who'd put palm oil into baby milk, but, hey...?!)

I imagine it wouldn't be a good idea to rely on this to get all the food you need, but...

I use it to make pancakes, mixed with a little milk or water, with an egg and some cocoa and/or beetroot powder.

Also, I try and do 'mini fasts' most days, so I limit my eating window to 10-12 hours (usually, 0900 to 1800/1900 if I can). I pinched this from the 'Wahls Protocol' developed by Dr Terry Wahl, who 'healed' herself of MS. I don't have MS, but noticed that she recommends it to restore/improve the effectiveness of our mitchondria, those little batteries within our cells that keep our body running. [I'm not good at fasting as my self-discipline fades with boredom, nor do I fancy a full Paleo- or Keto-type diet, so this suits me...... I still break the 'rules' from time to time, but I think it helps.]

If you suffer from acid-reflux, as I used to do, and want it to stop, then making sure you DON'T EAT for a minimum of 3 hours before lying down should help.

Milk-free tea's OK, but as low a level of caffeine as possible this time of night.

(If you get night-time nibbles, try a gluten-/sugar-free oat- or rice-cake.... chew slowly with some water... in the dark!)

About an hour before, I take the amino acid 'L-Theanine' to dampen down any stress-related Cortisol I've built up during the day....

Meditation I find difficult, but I love self-hypnosis CDs and tapes (old tech suits me best, as I can wind back to the place I wanted to listen to.... ho hum....)

In 1992, I discovered subliminals (messages buried deep in the music or other relaxing sounds). These really helped me through some very busy years, working all over the place - and I still return to them as a sort of sanctuary.

My favourite, from that time, was from Effective Learning Systems, but you can find similar on YouTube. Look for a person whose voice you like to take you through guided visualisation/light hypnosis and make sure you trust them before letting go with the subliminals.

One CD I re-discovered is on relief from Chronic Pain by Rachel Eccles. I'm glad I have the CD as I used it so often while coming off my painkillers that it paid for itself. (I think the only way you can access Rachel is by subscription). The CD relaxed me so much that I had to keep listening to it to hear it to the end.... as well as being relaxing, it contains a lot of useful information about pain.

Anything that encourages Alpha (then Theta) wavelengths in your brain will help you slow down. In the same way that the pendula of two grandfather clocks in the same room will self-synch, so will our brain and these waves. Theta is a deeper, even more relaxed state. It's best if you're lying down for this to get the most benefit.

N.B. The more stressed we get, the more difficult our left brain (right hand - mainly 'solid' stuff, such as practical thinking) finds it to link with our right brain (left hand - with lots of 'here there be dragons', more intuitive problem-solving).... Right hander here; not sure how this works for a left-handed person, but often wish I was one!.....

This means that, unless we take time to get ourselves present (wiggling toes helps) and reducing our bodily (deep breathing) as well as our mental stress, we are unable to access our full-brain thinking potential.

In the vein of continuous, personal learning:

I've just turned on "Activate Your Self-Healing Power - 528hz - Binaural beat - Accelerated Self-Healing" for free, on YouTube, in the background to typing..... and am finding myself going a bit squiffy....... I'm off to enjoy that now...... Yawn.......

Warm, sleepy, hopefully, healing hugs, dee x

in reply to Gooddaysagain

I will look into it. I’m too inflamed right now with reflux and I think gastritus to have milk. I get very upset and my stomach went to hell. I was out on antipsychotic to help with stress and ever since serious gut issues. I went off and it was stressful and I had to take laxatives for a year that’s what set this off. Bleeding the works from a stupid psychiatrist he put me in burn out. He said it would help me. It caused issues actually what out me in burn out messed me up royally I can’t have any fats like at all. I let myself have some chocolate a month ago and I couldn’t walk for two weeks. Then other day I had some chips. Stupid. I didn’t even have this prior to the meds. I’m anemic and frail and losing my hair severe again. I am taking a herbal thing to coat my stomach and I’ll try to stick to oatmeal and tuna rice cakes. The tummy meds make me nauseous and sick but it looks like I’m stuck on them I have to double them feel worse but have too. I was getting better from the damage done by laxatives in November then the chocolate & chips. Can you imagine a year of so much damage I couldn’t get offf the head meds from the burn out of bleeding but I’m working through it. No emotional crutch no meds I get so bloated from the reflux and tummy meds I can’t strengthen my stomach and pelvis it’s been a year coping. And I’m trying to get a new shrink. I do a lot of the things you do. I find the same.

Thanks for that info it reinstated what I need to do and no slip ups. It goes to show we know our bodies best and I am now meditating daily sometimes for hours to get through the burn out. I stopped taking my amino acids right now I’m taking a break from supplements to heal the gut lining and I’ll stop buying chips my diets been to bland I’m tired of my food. I won’t fast I get constipated and I think the gastritus is worse fasting so I’ll stick with gluten free stuff as much as possible and no sugars. The tummy meds bloat me so bad they actually send my refkux up my nose. It’s crazy what a bad doctor meds and stress can do.

Gooddaysagain profile image
Gooddaysagain in reply to

Remember to KEEP BREATHING!!!

warm hugs, dx

Painny profile image
Painny in reply to

Thank you guitars

Lots of tips, I look into Buffalo meat, from time to time I eat Brown rice but I love the taste of white rice, these are my occasional diets, good thing for me is I eat lots of vegetables and tuna.

As to vitamins I tried so many different things but I react to these badly😪I was told by a physician that my brain is no longer capable of processing anything. I agree fat and sugar send my brain into a different planet, it’s like getting attacked by your own brain

I rely on natural remedies for Ibs which is much cheaper than probiotics and besides I read in a medical journal that too much of probiotics can damage the tissues around the stomach.

Take care of yourself and the bank balance 🤩

in reply to Painny

I was reading up on glycemic index and actually long grain balsamati white rice has a lower index then brown and rice cakes have a high index. Crap !! I choose brown for the fibre but maybe I should be taking fibre supplements but I feel ok eating the rice cakes. They also say whole wheat pasta is good. But I know I get a gluten intolerance with inflammation but gluten free is high index. Wild rice has glycemic index of 45 and high fibre ( it’s actually a grass seed full of nutrients) white rice has 73 brown 68 so those two are pretty close. I eat instant oatmeal it’s quite higher compared to cooking rolled oats so I think I’ll stop being lazy and cook up my own. I think I’ll see if my body likes the wild rice it’s quite expensive but I suppose I could buy it on internet cheaper lol. I know I can’t eat potato or starch right now I ate a white sourdough bun yesterday and I’m paying for it too. Now cheats I guess for a month. See how I do if I do ok I’ll extend it.

Painny profile image
Painny in reply to

Thanks for ample information, I have tried wild rice but since you have reminded me I will buy some, In the main I go with common sense and do not eat crappy food, eating Big Mac 👎is once a year

Since Being diagnosed with this condition I cannot go near a lot of food so my diet is very restricted. I am lazzzzzy but you might be better off if you can cook for yourself once a week. Last time I showed members here what I cooked ✌🏻😻

JoQueenie profile image
JoQueenie

Thank you all.. food for thought ( pun intended) I must say. The red meat situation I will look into and I try to do gluten free as much as I can (then I go stuff it and eat bread and cake) I've had fibro for many years and it's like a never ending game of pin the tail on the donkey. Struggle with not knowing wether its fibro arthritis menopause or age so have no clue where to start or stop with any of it. Oh cr*p x

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., hello there, yes that’s hard trying to not wake up through the pain, I have been told I’ve got arthritis in my knees now so what with my fibro,that and sleeping with my cpap mask on (sleep apnea ) I get where your coming from, I try and have a soak in Epsom salts to relax muscles early evening, I do use bio freeze gel before bed on painful jointsc(knees) one of, just little thing s but like you say there’s proberly not much else unless you take pain killers, I do have codiene but not allowed that every day. Warmth definetly is more helpful so roll on the Summer xxx

CheetieCat profile image
CheetieCat

Hi

I'm exactly the same, feel as though I've worked a shift throughout the night as exhausted by the time to go to work! 🥴

Magnesium oil/spray is my life safer, relaxes your muscles & sometimes helps with sleeping. Strange one but Vicks on the soles of your feet can help and gives me an extra hour or so when I'm really struggling, weird but try it anyway. 🤗🤗

JoQueenie profile image
JoQueenie in reply to CheetieCat

Ooooooo now I've heard about vicks on the feet but never actually tried it 🤔 thanks for all the replies x

Gooddaysagain profile image
Gooddaysagain in reply to CheetieCat

OOooh! I like the sound of that, and so do my poor feet!!! thank you, dx

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