How do you know when a flare is over?

[Sueb24]

Thanks Sarah. I do take Epsom salt baths when I have the energy.

 

[Ian waxman]

Wow Ian. You really have been through the mill. I had ME/CFS for 8 years in my 40’s. I got through it eventually with the RA being diagnosed roughly halfway though. Then the fibro got diagnosed and I’ve had some bad times with it but never anything quite like this. It just doesn’t want to let go. Stress, anxiety and depression are so damaging to our bodies.

If I told you all the medications and times I’ve been to the hospital you wouldn’t believe me.i’ve been a plasterer so obviously the physical trauma doesn’t help my situation but I was ok working along and just like a bolt out of the blue my body went into meltdown.i was struggling just to get out of bed.horrendous headaches feeling really anxious and pain from head to toe off the scale.my wife had to cover me in voltarol but it didn’t last long.off to the docs i went they examined me asked loads of questions and said without a doubt it’s fybromyalgia,i was shocked,i honestly thought it was just me overdoing it.so started the medication,i was put on duloxetine and tramadol.and i was taking ibuprofen but the pain just wouldn’t reside.i’ve been through every med possible and they said because my pain is at the top end I had to go on reletrans which basically escalated to a dose of 40mcg the highest,the problem was if u got hot the patch burns your stomach.i went back and showed the doctors and they said i could try fentanyl.i’m on 50mcg and for once in my 25 years it’s settled it down.i’ve got no side effects but i also take citalopram 30mg and diazepam.its mentally messed me up to live for so long in agony and stress.its been a long long road and I’m thankful for my wife sticking by me and helping.fybromyalgia must be one of the cruelest symptom going.if you’ve got it really bad it’s got a grip on you and no one understands.the pain clinic were useless and said it was due to my back,degenerative disease.no chance on earth is the back causing widespread pain.it won’t beat me and I want the most out of my life and I hope you have the same positive attitude.if you don’t feel right don’t be fobbed off.go to the docs and tell them what you need.they don’t have the grasp of what fybromyalgia is so you’ve got to be tough with them.take care and we’re all in this together

 

[Ian waxman]

Thanks Ian. I’m desperate to talk to my rheumatologist later this week as myself and my family are really in need
of advice. Medications ( see my reply to SBee). I’m going to start talking to a private counsellor soon. I think the physical therapy
is too soon as I’m hardly even managing in the house. I live in a small village & really need to continue to drive or I will be really stuck.
My nearest therapy pool is a good 10 miles away & getting there is out of the question at present. One day eh? This ‘flare’ surely can’t last for ever….

 

[Ian waxman]

Yeah I’ve had plenty of flares.crippled by em.fybro gets hold of you mentally so your body then reacts and various symptoms kick in,I can’t be precise everybody’s different.just from my perspective.i’m no expert but having it for so long I’ve been through every trauma going.suicide?yes I really wanted to end the agony,train tracks is all I was thinking,but I’ve got 3 great girls who are a rock and my wife oh and 2 dogs so I turn my thoughts to them.but it’s always there lurking and waiting till you overstep the mark and I’m crippled again,violent headaches,nausea,pain just lifting me plate.i’ve accepted that this is the way it is,drove the docs crazybut I won’t take no for an answer and I hope you don’t too.i think mental trauma has had a part to play in my life,my mothers side especially,my grandad tried to kill himself multiple times,my sister suffers with depression so there’s something in the blood.if it’s in the genes then u can’t change fate u adapt and I’ve adapted but I wish I never had fybro it’s ruined a large chunk of my life.physical work and fybro don’t mix.i hope you find a positive path and enjoy your life.like i said dont be fobbed off,be positive and keep at em u will get there.take care xxx

 

[Sueb24]

A question if you don’t mind SBee…

Do you think you are in a fibro flare in that you are just ‘stuck’ with the same symptoms endlessly or do you think you are gradually recovering by doing a little more as each day passes?

Okay, so we know that fibro is a chronic disease that waxes and wanes with very bad times and better times (even total remission times) but I’m interested to know if you or others think that if you just try to ‘wait it out’ and do very little except gentle movements and resting you will eventually get much better?

I know fibro is so variable but just wondering…..

 

[SBee]

@Ian waxman I always appreciate the full honesty you give in your replies. You say it like it is.
Sometimes although I try hard to stay positive and find ways to approach and adapt living with chronic illnesses it kind of gives me a real knowledge that someone ( like everyone on here ) just appreciates its bloody hard, painful and can really do you head in.

I know with all certainty that physical and mental pain have a knock on affect with each other. And the mental health side can be extreme. Fortunately I am pretty stable, on the MH side, mine was worse by another health condition, but with fibro it kind of hangs there in the background like you say it does for you.
thankfully this forum can only help massively in support for all of us. Keep pushing at the docs, he the best we can.

 

[SBee]

Hiya @Sueb24 please always ask anything you want.

As you say we are all individual and our symptoms and I think our responses or awareness to them can differ so I can only way how I feel things.
I am in a bit of a strange position in having only been formally diagnosed with fibromyalgia in December, and a few weeks ago with another chronic illness, inflammatory arthritis. So I am still untangling what symptom comes from what condition as ( like other chronic illnesses ) the symptoms can crossover.
Generally my main symptoms, mainly chronic fatigue, all body constant stiffness, nerve pain, skin over sensitive to touch, are with me constantly. I think a 6\10 every day average. I consider these as probably fibro. The arthritis ( Inc osteoarthritis for some extra fun) is what I feel in my hands, fingers and wrists and is a different stiffness swelling and pain, again 24 hrs) along with fatigue and other different symptoms

I would say the levels do fluctuate on a day to day basis, depending on what I am doing physically, or fail to move gently enough, or do not rest properly. So I am quite constant in my levels. They don't go away.

Autumn last year I had a huge and very noticeable flare for several weeks. Literally crawling as I couldn't move for the stiffness, sleep worse as I was crying out in pain, unable to do basic tasks. Whether that was fibro \RA or both I can't tell you.

Am sure this doesn't help you at all. For me, I try to rest on the worse days,and push myself a little more on the stronger days. Mostly works.

Above all, I always try to find little ways to help myself, accept the bad days for what they are, hope tomorrow will be better and always try to remember to treat myself with kindness.

 

[Ian waxman]

@Ian waxman I always appreciate the full honesty you give in your replies. You say it like it is.
Sometimes although I try hard to stay positive and find ways to approach and adapt living with chronic illnesses it kind of gives me a real knowledge that someone ( like everyone on here ) just appreciates its bloody hard, painful and can really do you head in.

I know with all certainty that physical and mental pain have a knock on affect with each other. And the mental health side can be extreme. Fortunately I am pretty stable, on the MH side, mine was worse by another health condition, but with fibro it kind of hangs there in the background like you say it does for you.
thankfully this forum can only help massively in support for all of us. Keep pushing at the docs, he the best we can.

I suppose it’s made me look at life differently.i just want to help anybody who is in the situation we’re in.ive been through so much i just want to give people my honest view of what fybro entails and all the meds that have been prescribed for me.i never in my wildest dreams think it would be a lasting illness.i’m here if anybody wants my honest opinion cause god I’ve been through hell.take care xx

 

[Ian waxman]

A question if you don’t mind SBee…

Do you think you are in a fibro flare in that you are just ‘stuck’ with the same symptoms endlessly or do you think you are gradually recovering by doing a little more as each day passes?

Okay, so we know that fibro is a chronic disease that waxes and wanes with very bad times and better times (even total remission times) but I’m interested to know if you or others think that if you just try to ‘wait it out’ and do very little except gentle movements and resting you will eventually get much better?

I know fibro is so variable but just wondering…..

Resting does help the fybro to a degree but it’s 1.30 in the afternoon now my heads banging I’ve got severe tinnitus I feel sick as a dog my bodies aching,I feel anxious,tired beyond tired.and it feels like someone’s sticking daggers in my back.thats everyday for me resting or moving about and if I overdo it then I’m crippled for days maybe weeks so begins the spiral.the doctors can’t do anymore for me.i’m on fentanyl 50 mcg so i suppose I’m pretty bad.i’m not being depressing just a day in the life of a fybro sufferer.isn’t life great

 

[Polly58]

Hi I am just coming out of a flare. I live by myself but my adult children are all near by.
My flare up is quite severe and I’m bed bound whereas normally I don’t sleep more than 2 or 3 hours at a time. In a flare up the fatigue is so bad I cannot keep awake. Walking is very much holding on to things. I have two false knees and they are permanently swollen.
I have had Fibromyalgia over 22 years and we are all different. I keep packs of bottles of water in spare room in case I cannot get downstairs. Food doesn’t matter I don’t fancy anything. So family get me a sandwich or fruit and yogurt!
I know I’m coming out of this one because I’m not sleeping which is normal. Pain is bearable.
We have to do what is right for us.

 

[Ian waxman]

Hi I am just coming out of a flare. I live by myself but my adult children are all near by.
My flare up is quite severe and I’m bed bound whereas normally I don’t sleep more than 2 or 3 hours at a time. In a flare up the fatigue is so bad I cannot keep awake. Walking is very much holding on to things. I have two false knees and they are permanently swollen.
I have had Fibromyalgia over 22 years and we are all different. I keep packs of bottles of water in spare room in case I cannot get downstairs. Food doesn’t matter I don’t fancy anything. So family get me a sandwich or fruit and yogurt!
I know I’m coming out of this one because I’m not sleeping which is normal. Pain is bearable.
We have to do what is right for us.

The sleep aspect has always been a big part of my illness.i’m just like you.some nights I get 6 hours some nights 2 or 3.doctors prescribed amyltryptaline for my pain and sleep and it did nothing.i don’t want to rely on sleep tablets all my life I’ll live life a zombieI think our bodies just can’t switch off like normal people.what meds did they prescribe you?when you are taking so many meds it messes your body big time.they wanted me on amyltryptaline,tramadol,ibuprofen,tramadol,citalopram,diazepam plus I have high blood pressure(runs in the family)3 tablets for that,asthma and sleep apnoea so it’s quite grim.i hope your find thes right path but it’s not that simple far from it so we’ll plod on and just accept we are the unlucky ones!

 

[fibrofoxy]

There is a helpline at the hospital although the nurse told me it was mainly GP’s that managed fibromyalgia these days. That really isn’t working for me - different G.P. to talk to every time, no
consistency, blah, blah….

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I’m trying to stay positive with the ‘this too shall pass’ in mind but it really is difficult. Thanks for your advice.

Ugh, that is so frustrating!! I experienced the same thing. My rheumatologist told me fibromyalgia is a neurological condition therefore I was better off seeing a neurologist... then my neurologist wanted to discharge me from his care because he thought I should continue seeing the rheumatologist for this instead. They both usually want me to see a PCP prior to them, when I call about specific symptoms ... but my previous PCPs have all been either consistently unavailable or they just plain leave! Right now there is a big waiting list for PCPs at facilities all around my area, too. I share in your struggle.

---

'This too shall pass' is a nice mantra but I feel it's not the only one that should be in our arsenal. Something that worked for me recently when I had a massive flare was consciously saying to myself "I forgive myself for needing to rest"... and after four days of misery, I immediately felt the weight begin to slowly lift. My inner self talk is something I'm working on and I'm sure it plays into my flares. It's easier said than done though, of course...

 

[fibrofoxy]

@Sueb24 I'm happy to hear you were able to have your appointment and it went pleasantly.

I get night sweats during flares too! I only just realized that now that you say that! Wow.

I have not tried magnesium but was recommended it and am considering it... you say it makes you stiffer?

 

[Sueb24]

Hi I am just coming out of a flare. I live by myself but my adult children are all near by.
My flare up is quite severe and I’m bed bound whereas normally I don’t sleep more than 2 or 3 hours at a time. In a flare up the fatigue is so bad I cannot keep awake. Walking is very much holding on to things. I have two false knees and they are permanently swollen.
I have had Fibromyalgia over 22 years and we are all different. I keep packs of bottles of water in spare room in case I cannot get downstairs. Food doesn’t matter I don’t fancy anything. So family get me a sandwich or fruit and yogurt!
I know I’m coming out of this one because I’m not sleeping which is normal. Pain is bearable.
We have to do what is right for us.

I live alone now as my husband died suddenly in 2023. How I didn’t have a flare then I don’t know. Then, this February, I overdid a day in London when still experiencing a sinus infection. The flare started and on the first anniversary of his death the emotional stress hit and *wham*. My grown up families also live nearby & are really supportive but I feel so guilty they have to do all this for me. I’ve never experienced muscle stiffness and spasms to this extent. Horrendous. I haven’t stayed in bed for one day through all of this as that stresses and depresses me even more. I try to invite people round just for a cuppa for an hour some days. It’s a real effort but otherwise I would honestly go mad.

 

[Sueb24]

I have not tried magnesium but was recommended it and am considering it... you say it makes you stiffer?

No, not stiffer. I am stiff but I don’t think it’s the magnesium doing that.