Just having a bad day, for the last 4 months....

Els72

New member
Joined
Apr 7, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
10/2015
Country
FR
I have been living with symptoms including chronic shoulder pain and severely disturbed sleep since 2006 and was eventually diagnosed with fibromyalgia in 2015 after weeks of tests. Cried with relief at diagnosis, then at lack of treatments.
I am still working full time but finding it harder and harder to function on a day to day basis. My family know I can't do everything yet somehow expect everything magically to be done! I care for my 91 and 86 y old parents who have their own problems.
My boss isn't exactly an understanding type.
I take pain meds, drops of amitriptyline,and 2 prescription meds for sleep. I sometimes get a period of 4 hours unbroken sleep in a night with all the meds.
I'm so tired, all the time, even if I lay down to rest in the day I cannot sleep,
My pain level has gone from mostly manageable to a see-saw of agony and excruciating pain. All over, shoulders, elbows,wrists, hands, neck, eyes, skin irritation and burning, pelvis and lower back, knees, ankles and feet with a special hellish place for the Achilles tendon. Pain is aching, burning, sharp electric bolts, stabbing, cramping, the whole gamut, sometimes several types in different places at the same time.
Lately the pain level has gone up, but the worst is the exhaustion. Can't think for exhaustion. Can't make clear points at work, get lost in the middle...
Mainly I am worried about losing my job, there's not a lot going here at the moment. My life is already very small, I don't like making plans then letting people down. I've tried lots of massage therapy, relaxation, hypnosis, over the years they have helped a bit but also emptied my bank account.
I'm stuck in quite a dark place emotionally, and feel that progress has stalled. I don't have an energy for a plan... Also feeling very alone with my fibro.
Helpful advice anyone? Or just some understanding....
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hello Els72...............

There is not a single person on this forum who would not relate to something you say here, and probably most of us can relate to all of it.
Especially, for me, people who "know I can't do everything yet somehow expect everything magically to be done! "
Boy, do I sure know that one.

And it's not just feeling tired, is it? It's Fatigue. that's different. That's not something that a good night's sleep ( if you could get one) can solve. If you lie on the couch it doesn't help, because somehow it feels as if you are even too tired to lie on the couch! A dark place emotionally is completely understandable and I have been there too, a lot.

All of us here are here to commiserate with one another, to support each other, and to offer helpful ideas when possible, so you have come to a good place. I sincerely hope that being here will be a positive experience for you and that you even find something that helps.

One thing I know from my own experience is that there are two important things (among others) to keep in mind.
One is that at times you just gotta vent! You need to complain and know someone hears you. You can do that here. And you won't lose friends who don't want to listen if you do it here. :)
The other is, you have to do all you can to help yourself.
If you only do one of those things without the other, you may get stuck in either bemoaning your fate or in trying too hard to fix yourself, and neither one is actually helpful.

I wrote a post that is pinned at the top of the General forum, in which I put all my best tried and true advice for newcomers to this forum. It is my wish that something in there is helpful to you. If you read it and have any questions, let me know.

finally, I want you to know you are not alone. We may all be in separate places geographically, but we all share many of our experiences with one another and reading and writing on this forum can help you to feel supported.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I can totally relate, I have diagnosed FM and CFS both, and it can be tough. But this year I have found some relief by seeking help with a functional medicine doctor who has set me up with a regimen of supplements and bio-identical hormones to help get me back into balance. She also told me that 90% of my recovery would come through my diet and recommended a huge list of books to read. I recommend you start with "The Auto-Immune Fix" and then "The Plant Paradox". They are like stepping stones for me and I am feeling quite a bit better after only a couple of months of following these protocols. The biggest changes for me have been reduced fatigue and reduced pain make it so much easier for me to do the simple things in my life whether that's accomplish my work, clean the house, prepare my meals, play with my kid ... things that I truly struggled with just a few months ago.
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
102
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
I'm starting to feel lucky that I've been on a paleo based diet for the last 5 years. I get horrible pain but on occasion. Always fighting off mind pain with pain lotion and
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
102
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
Oops hit button. As I was saying,
pain lotion and marrijuana. Sometimes ultram, which is a mild pain medication.
I sleep ok, 7 to 8 hours. I garden and cook. I went off the diet last January I ate what I wanted for my birthday. Huge mistake, felt awful with flare ups. So it works for me. Its not 100% but way better.
 

CScalise

New member
Joined
Apr 10, 2021
Messages
2
Reason
DX FIBRO
Diagnosis
05/1986
Country
US
State
MA
I had to stop working 20 years ago. I went on Disability and have never been able to go back to work. I am now in my mid-60s and don't have family, so it's a double-edged sword. I know what you are feeling and my only suggestion would be to see if you can get on Disability and focus on your health if it's possible. My symptoms have gotten much worse the older I get. I changed my diet drastically and I try to walk a lot in the Spring and Summer. It helps quite a bit, but if I do any little thing my body doesn't like, I'm down and in bed for days. It's a hard life to live, but getting regular psychotherapy reminds me I do have some good days in between and when I'm down and out I have to remind myself that there will be a better day coming even if it's short lived.
 

Susan Hopps

New member
Joined
Nov 24, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
10/2009
Country
CA
I don’t think I have helpful advice but I can assure you that there are others who have very similar symptoms. Right now, my pain is somewhat less but the fatigue is overwhelming. I can lay on my couch all day alone, no tv or music, no book, just me and my thoughts. There is no escaping it. If I do get up to do something, I find myself right back where I started within a couple of minutes, and again it starts. Listless and lifeless, depressed and isolated.I was accepted for our government disability insurance which has helped. Every day I am fatigued but unable to sleep.
you are not alone and most of us cope as best we can. We need a magic bullet, maybe one day. Susan
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,447
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
I hear you loud and clear.I have not had a day free from pain in 15 odd years ,I have now found out I have osteoarthritis in my feet.I simply couldn’t walk for a few days .I feel pretty flipping useless I can tell you.48 feel like 98
 

Jemima

Active member
Joined
Jul 30, 2020
Messages
91
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Can't think for exhaustion. Can't make clear points at work, get lost in the middle...
Mainly I am worried about losing my job, there's not a lot going here at the moment.
Hi Els72,

I'm so sorry you're going through all of this! It sounds like you are carrying an awful lot on your shoulders, and its testament to how strong you are that you've kept such a complex show on the road up until now.

As you've probably figured out by now, we each seem to find relief in different resources, and frustratingly there doesn't seem to be any reliable rules that we can follow. That feeling of hitting the wall is so awful and isolating. I agree that a lot of us can relate to that, and it's a really tough place to be.

Over time, continuing to experiment with diet, light exercise, sleep hygiene, meditation and supplements, alongside keeping exploring other treatment avenues, may help. However, it sounds like you need something to help you with current hurdles! Based on my experiences, I've got a couple of recommendations that might help you in the immediate term.

I'm a copywriter, so brain fog and fatigue were burdens that I just had to get a handle on. While not the same struggles as yours, I was also facing some hefty external stresses. At my worst I was near bed-bound, with a lot of pain, unable to think and experiencing memory/speech issues. The medications my doctor tried me on made me really sick, so I started looking for alternatives.

I made a massive breakthrough on the cognitive/focus issues when I started supplementing for mitochondrial support. Mitochondria are the tiny powerhouses in our cells that convert chemical energy into something that our cells (brain and body) can actually use to function. Studies have connected fibromyalgia with dysfunctional mitochondria - which makes sense if you think about it. You give your body all the fuel it needs, but it can't properly convert it to get things done, so you feel like crap! I started taking CoQ10, folic acid and ALA (alpha lipoic acid) and it was like the clouds parted. I still get tired and foggy, but nowhere near as bad as it was, and crucially I'm managing to work. The change was pretty quick - within a week or two - so perhaps you'll find that helpful. You could just start with CoQ10, which is easy to get and inexpensive, and see if it makes a difference.

On the more physical symptoms, you might find the supplement Boswellia helps a little. Alongside all sorts of aches and pains, I was experiencing oedema (mild swelling all over my body) and had the sense that my whole body was constantly inflamed and angry, even though my doctor found no indication of inflammation in my blood tests. Boswellia is a pretty popular fibro supplement that seems to help some people with inflammation, swelling, joint pain etc. It made me feel quite a lot better, and then when I ran out after two months my feet swole up within a few days, so I'm confident it was doing good work. Could be worth a try.

It sounds like you're probably grappling with a lot of stress, which is probably contributing to your sleep issues and symptoms overall. I think that many of us wind up in a vicious cycle - with our symptoms kicking off a stress response, which in turn primes us to be more reactive to everything else in our lives, and that impacts our health even further. A therapist helped me manage that initial stress response, working towards accepting that my pain was not a threat to me, so I didn't need to go into a stress state when I felt it. Perhaps try exploring things like clinical psychologist Dr. Paul Gilbert's theory of the three emotional states, getting out into nature when you can (google "shinrin-yoku"!), and try out meditation/relaxation apps with free versions. I'm obsessed with a light therapy app called Lumenate at the moment which uses your smartphone's torch to induce a meditative state - there's a ton of stuff out there to try!

That's the best I can offer, and of course sadly there are no guarantees that what helped me or anyone else will necessarily be the right fit for you, but I truly hope so. I do believe that there will be something that will help. Really, really good luck. Keep venting on here when you need to, and let us all know how you get on.
 

Peachy

Member
Joined
Jan 14, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
06/2017
Country
CA
pain lotion and marrijuana
This is very interesting and also a life saver for me. I use CBD salve for aching body and medical marijuana thc oil for sleep at night. I mostly sleep reasonably well now compared to years of terrible/no sleep. I also started a Paleo diet 5 years ago which transioned into a nutritional ketogenic diet which also helps. None are cures but all help significantly with basic functionality and getting through each day without unraveling completely. Very important well-being resources in my coping toolkit.
 

Flexecif

Active member
Joined
Sep 1, 2017
Messages
92
Reason
Diagnosis
00/0000
Country
CA
State
Canada
Just a bad day, definitely not a bad life. That's what I keep telling myself when I'm having those days.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
442
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
getting regular psychotherapy reminds me I do have some good days in between
I'm doing another try on psychotherapy since melatonin/CBD oil put me out of order for a month. Gestalt therapy with someone I'd been too before 8 years ago to check on my traumata, which were OK, and she was too, tho. I'm not sure if it's the right thing, esp. cos she's started up a bit on my childhood which I doubt will be productive, as I've been there so many times, and know exactly what the problems are/were and what influence that had on me, but she told me to not accept things so easily, so I'll probably ask why but without a good answer will want to concentrate on the present. It has made me think about personality things that may have contributed and made me debunk the type-A (and B-)personality theory after reading up what it actually entails. But understanding why I am/was this way isn't the problem for me, I have no problems changing myself, done that time and again, I want to know what, how and why to do so, if there is anything.

One thing is pretty sure - most work is no longer good for me, because I like to overdo it and I no longer really want to, and there's lots at home I like to do without overdoing it, and won't miss it. So it's good for me to go easy and probably take work down even further for at least a year. Easy work is OK. The work I've been doing up to now has just become too hard for me. Something I've been needing to accept and am realizing more and more, my wife, friends and docs too.
 

chillax316

New member
Joined
May 7, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
Peachy, Thank you for mentioning CBD salve. I hadn't thought of that and it is helping me already.
 

Peachy

Member
Joined
Jan 14, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
06/2017
Country
CA
Delighted to hear it’s helping you. I even add some essential oils to cover the earthy smell so it’s more discreet (though I don’t mind it personally). They can also provide added healing benefits.
 

femfatigued

Member
Joined
May 9, 2021
Messages
19
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
Hi, Els. Loved your title, so had to read. I completely relate to everything you said. I haven't been diagnosed yet and may not ever get diagnosed. I have given up trying to get a diagnosis a few times over the past 10+ years. After a while, after all the tests and being poked and prodded and spending all that money and no one can tell you what's wrong, it's discouraging. Or one starts to wonder am I just a hypochondriac. I'll let it go for a few years, but then either pain or fatigue eventually gets overwhelming again and I start the process all over again with no answers being given. I see from reading here that getting a diagnosis may be a relief, but it appears the treatment is lacking. My mom died 3 months ago so between that and the pain & fatigue, I am a mess. I have missed so much work I can't believe they haven't fired me yet. My mom was my main support system and who I vented to and now she is gone. My daughter just got married & doesn't really make time for mw and when I even bring up depression, she doesn't want to talk about it. I have vestibular migraines/bppv and when I try to talk about that condition, no one in my family wants to hear it. They all think I should go to work every day and stop calling in. I don't like calling in or letting people down, but I am barely functioning. None of them understand or just think I am lazy or sorry or maybe just crazy, I guess. If I get fired, I don't see myself being able to work anywhere else if I don't get some help and will have no choice except to apply for disability. I hear it can take years to get approved and my family will have a fit if I go that route, but I may not have a choice. I hope you find some relief soon!
 
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