Morning pain, stiffness and recovery time

[Surviver 45]

@SBee, Wow, your positive attitude inspires me it really does. Always in pain but still seeing the positives through it.
That takes some kind of super human strength !! You go girl
Iv had trouble seeing past the pain today.
It's been intense. Just all over the body, no particular part.
But tomorrow is a different day. And hopefully a more mobile, low pain day.🌤🌤
It's very comforting to know I have Fibro warriors at the end of my phone. As like you, I know no one in 'real life' with the same existence as me. We got this!

 

[JamieMarc]

Hope you win this fight @JamieMarc

Thank you Sarah.

I have been disabled due to another chronic disease since 2010, so I do get a great deal of assistance for that. And some of that assistance, such as my medical care, is also applicable to my fibromyalgia.

This thing that I'm doing now with copay assistance. I'm grateful that I am getting it for the other condition I have, and I appreciate your support, but I really was trying to drive home my point that not nearly enough research is going on with regard to fibromyalgia, nor is there enough support and assistance for fibromyalgia sufferers. That's one of the reasons why this form is so amazing and helpful. Because there is such a scarcity of resources, at least more than there should be in my opinion. This is a very serious condition, a very serious disease and it's just not talked about enough. I can't tell you how many times I reveal my fibromyalgia to someone and they're like I'm not really sure what that is or I know a friend who has that I'm so sorry, but nobody really seems to know what it is or what it's like living with it unless you have it.

 

[SBee]

Thank you so much @Surviver 45 that's kind of you to say so.

Obviously I am not all sweetness and light. Mornings ( like so many as we know) that's when I swear at my hands because they just dont work. It's hard to pick a cup up and my energy flags almost as soon as I get up. you didn't see me when I was literally collapsed on the floor crying and feeling unable to cope. some days as you know with a yesterday's day of pain (soft hug for you there) I just almost write the day off, and again like you, hope the next day is better or I am just able to cope better.

But I'm trying hard to adapt to this life, I don't want it ( for any of us ) But I mostly accept this is what it is. I have tried to stop remembering how 2 years ago I could do a walk\jog for two hours a day, followed by a few hours in the garden. Maybe I wasn't listening to my body enough, with so many stresses and was setting myself up for a fall?

I can be quite introspective atm, not necessarily a bad thing. Not so much dwelling as more considering?

I send good wishes for a happier day for you, always be kind to yourself, and to everyone. Because we deserve it. ❤

 

[SBee]

@JamieMarc I can feel your real frustration from here. I'm new to all this as you know, despite having the symptoms for so long I was only diagnosed in December. But I can honestly say I had no real idea what fibromyalgia was myself. I know of one person who has it who seems to be a able to live an extremely active life every single day. I didn't know what it entails on a daily basis for many of us with little reprieve. It's quite consuming.

So for me personally I am in the early stages of how much\little is really known and researched. Much of my own knowledge has been found by myself online and particularly form this forum. I am yet to delve into now much research is done in the UK but due to the general lack of knowledge from people.around me I suspect in is very little.

And the worse thing for me, is when we at physically weak due to working with seriously debilitating symptoms ( which oft affect our mental health) for me, I know I lack the strength to push for more help and support from professionals at the time I need it most. It's exhausting sometimes.

I don't often bother explaining to some people what it's like moving with fibromyalgia. You try to explain what now chronic fatigue feels and you get the ' oh, yeah I had such a bad nights sleep last night ' so I just don't bother. some good friends try to understand, but mostly I just feel more comfortable on this forum we live it day to day so we are the best people to understand. Doesn't seem in general the medical professions are catching up fast enough.

Wish you well as always my friend

 

[Sueb24]

Gradually working my way through threads on here and just came to this one.

I’ve been in a severe flare since February this year though I was improving mid March but over did it. In the last few weeks I’ve had awful muscle spasms and stiffness when I get out of bed (after a night of very disturbed sleep with sweats and burning in my feet etc & vivid dreams). The pain however has diminished but is still constant. Are you saying you are always like this with your fibro or just when you are in a flare? Do you feel you never improve Badger?

 

[JamieMarc]

@Sueb24
I know your questions were directed at badger, but I wanted to ask you something.

You mentioned some recent sleep symptoms. I am curious have you recently started any new medications, and are you on any antidepressants?

 

[Badger]

Gradually working my way through threads on here and just came to this one.

I’ve been in a severe flare since February this year though I was improving mid March but over did it. In the last few weeks I’ve had awful muscle spasms and stiffness when I get out of bed (after a night of very disturbed sleep with sweats and burning in my feet etc & vivid dreams). The pain however has diminished but is still constant. Are you saying you are always like this with your fibro or just when you are in a flare? Do you feel you never improve Badger?

Hi Sue, if you think of it as levels, I always have pain and stiff muscles but it varies. Some pains or stiffness across the body are at higher base levels than others. After activity they flare to differing levels with mixed results following rest. It depends on the severity of my injuries and is complicated by deconditioning. eg my neck pain (whiplash) and lower back stiffness is worse than my shoulder pain and stiffness either at base level or flare. The discomfort is constant making pacing difficult within the cycle of deconditioning. It can take until the next day for some pains to calm down, my hamstrings have been bad for days.

I'm sorry to hear that you have had such a long flare, it's very frustrating when pain take months to settle down. It's good to hear that the pain has diminished somewhat at least. It's worth persevering gently and trying to improve sleep patterns as disturbed nights will leave us feeling quite sore the day after.

 

[DebMarPir]

I echo @JamieMarc very much. Since my official diagnosis about 2-3 years ago, my symptoms are more pronounced but some many go back decades. Now I no longer function well mornings. Too tired and make no appointments for fear of falling asleep driving. I am stiff mornings and night, but loosen up in between. When I awake I stretch a little and take pain meds. Tylenol often, Robaxin (muscle relaxant) and Gabapentin (nerve pain but it stops spasms, too). I often feed my pets, then have coffee and yogurt while lying on a heating pad on the couch as I gradually lose my fatigue. I am bad about exercise but I have had 3 years of knee surgeries in a row. I do accomplish other things but stairs for instance are painful still, or lower back, so I pace myself and get less done. I am a night owl and have to take meds to sleep. I try to get to bed by 1:30am but can fall asleep hours later at times. I am a little like that film Groundhog Day; I just get awake and doing things and then I have to sleep again!

 

[Sueb24]

Yes Jamie. I always take a low dose (30mg) of duloxetine but it got increased to 60mg and then 90mg for my anxiety. Since I started taking it in the morning my sleep is better and I can sleep with herbals like Nytol. The trouble is the flare is causing such sweating and burning it wakes me up a number of times every night. However, according to my smartwatch, I slept for 9 hours last night & only woke three times which is pretty amazing compared to a couple of weeks ago when I was waking 6/7 times in 5 hours.

 

[JamieMarc]

@Sueb24
The reason I asked is because after trying every antidepressant imaginable when I was suffering from MDD, in the end I was considered treatment resistant due to the very serious side effects I experienced of vivid, very very disturbing night terrors. Worse than any nightmare you could think of, and I would wake up every morning feeling suicidal and would not be able to shake that off for a couple hours.

So if the dreams are troubling you, I know you mentioned many other things in your post, I suspect that is most likely related to the duloxetine. That is indeed one of the antidepressants I took at one time that caused the horrible side effects I mentioned.

Just wanted to share my own experience and thoughts on that aspect of your post.

Hugs!

 

[male]

I'm like you Sbee I wake up every hour my alarm goes off at 6am every morning, I also suffer with neck pain shoulder pain pins and needles in my hands and feet numb legs aching joints 24 hours a day seven days a week. I just try to ignore it now but sometimes it's too overwhelming. So to all my fibromyalgia friends you are not alone. My mates at work take the mick out of me all the time. So I try not to tell too many people about my condition that's why I am so grateful for this site.

 

[intheaquifer]

Hi everyone, I can't tell you how I feel knowing that I'm not alone in this situation; it's a guilty feeling like so many of you have said, because fibromyalgia is a tough condition to have, but being in community with wonderful people like yourselves makes all the difference

I've dealt with chronic fatigue for various reasons since I was 12, but the catalyst for my fibromyalgia diagnosis was an uptick in severe, symmetrical joint pain back in January that my care team couldn't find any other explanation for. I've found in recent months that my pain is considerably worse in the mornings, to the point where I'm in bed anywhere from 7am until midday in a bit of a fatigued haze!
For context, I'm in my second semester at university, so balancing student life and a recent diagnosis has been a bit challenging but here's what's worked for me (through a bit of trial and error):

• My degree involves a mix of online and in-person classes. I've managed to structure my timetable so that none of my lectures start before 10am, and most take place in the afternoon, giving me the mornings off to give myself time to get in order.
• Hot showers to defuse the joint pain and a cold morning coffee (I can only do 2 shots before my hands start shaking, then I'm onto decaf - Merlo is my default, and they ship internationally @SBee )
• I don't know if it's just a fibromyalgia thing because I'm also hypermobile in certain joints, but fabric wrist supports have worked absolute wonders for me, particularly if I'm typing or writing for hours on end which causes my pain to flare badly. they tend to be pretty cheap from pharmacies or sports shops and they're pretty durable so good for housework or general work

 

[sunkacola]

Welcome, @intheaquifer . I hope the forum is helpful to you.

 

[SBee]

Hiya @intheaquifer

Thanks for the Merlo coffee tip there! I was straight onto their site. I'm a sucker for pretty packaging too so that's looking a good bet!
( for any others who strive for a good decaf that actually still tastes like coffee, Illy decaf instant does it for me ) no palpitations but it does a seriously good brew.

Oh and welcome of course. You sound like you have worked a really good formula to work with the fibromyalgia but also managing to juggle work loads and timings so you can continue to study. I totally go with the trial and error to see what works for us as individuals, as well as with the fluctuating nature of fibro. It takes some doing and I know I don't always get things right all the time.

Nice to have you here.

 

[Ian waxman]

Like many of you, I feel certain, I wake up every single morning stiff, with a lot of pain all over my body, and it takes me at minimum 2 hours before I can really accomplish anything.

The first thing I always do when I wake up, after steadying myself and making sure my balance is okay, is get myself a tall cold glass of water and a mug of coffee. I take these and my morning meds to the dining table, with my phone, turn on the heating pad I have attached to the back of my dining chair, and basically sit, sip water, drink coffee, and work on my phone for about 2 hours before my pain and stiffness subsides and I can get about my day.

I do get up every 15 to 20 minutes and walk around the house, do some stretches, but then come back to the dining table again. This is how my every morning is.

I'm wondering how many of you reading this also can't do much of anything upon Awakening for hours. I would love to hear the experiences of others in our forum. I'm sure I'm not alone, but I'm curious as to how common this is. It is frustrating. It is typically the worst time of my day, and despite doing everything I can to treat myself during this time, it seems like it will be the norm forever. What is your morning like?

Hi!I am a seasoned veteran of mornin fybro,to describe my morning pain is a little hard due to my ongoing condition,first is the nausea wretched nausea,then the pain kicks in,pain all down my body and blinding headache.i have to have my painkillers at the side of me and my missus brings my tea.i’ll take numerous meds which include tramadol,cyclazine,ibuprofen,citalopram,diazepam.i am also on fentanyl 50 patches.it will take me 2 hours to get back to some sort of norm and try and eat a bit of brekkie usually a bagel,too much milk makes my ibs into overdrive.it will never change i know that and the docs have warned me I can’t change my strong meds again.life will go on but it’s made my life a complete misery.take care its horrible