Help a fibromyalgia newbie out please?

[mineofuselessinformation]

Got a diagnosis today which makes sense of a lot of things, and I do feel like I've finally been listened to (but it's taken a long time), however I do feel a bit shaken by the diagnosis, so I have some questions:
Do you work full time, and how do you manage flares if you do?
Do you take amytriptyline? Did you find it made you sleepy during the day? What dose are you on?
Are you getting any help from Occupational Therapy or Physiotherapy?
Do you see a Rheumatologist?

For information, I also have hyper mobility and osteoarthritis. I've been prescribed 10mg amytriptyline, but can go up to 20mg.

I'm just hopping there's someone else out there who might be able to help.

Thank you, @HisSplendidSilentSun and @TacCat49.
Your replies have given me food for thought. I'll reply properly when I get time - I'm off to bed shortly, as I have things I need to do tomorrow.

Since I was put on Sertraline for anxiety my fibromyalgia has actually improved somewhat.
I can cope with the pain, I'm used to that with a lifetime of migraine and osteoarthritis for the last 15 years, but I do find the exhaustion rather restricting. But I'm lucky, I run my own business with my DH so I can rest when I need to.

Best tip, don't rest too much, but alternate with gentle movement. Little and often.

Imipramine is an non-drowsy alternative to amatriptaline!

@HeechulOppa and @LookToTreblesGoingTreblesGone, I will look into those, thank you.
10mg of amytriptyline isn't doing much for me at the moment. I'm going to give it another night and then step up to 20mg. As I'm off work anyway it should be doable even if I'm in a haze first thing in the morning (although I feel like that at random points in the day anyway).
I know you will all call me an idiot, but I promised to take DC2 to an event today (which they couldn't possibly have gone to on their own as they have a disability). Whilst I'm now feeling utterly wiped out by it, it's confirmed that I definitely need to take time off to get myself better.
I'm not feeling sorry for myself, as I know I will get to grips with it in time, but it's a shitty illness isn't it?

@mineofuselessinformation

Got a diagnosis today which makes sense of a lot of things, and I do feel like I've finally been listened to (but it's taken a long time), however I do feel a bit shaken by the diagnosis, so I have some questions: Do you work full time, and how do you manage flares if you do? Do you take amytriptyline? Did you find it made you sleepy during the day? What dose are you on? Are you getting any help from Occupational Therapy or Physiotherapy? Do you see a Rheumatologist?

For information, I also have hyper mobility and osteoarthritis. I've been prescribed 10mg amytriptyline, but can go up to 20mg.

I'm just hopping there's someone else out there who might be able to help.

To answer your questions:

• I had to take some time off after the diagnosis - about 6 months - but once I got my health under control (which did mean some quite large lifestyle changes), then I could work full-time. But it has been a knife-edge, and I prefer not to work full-time if that's feasible.
• Flares are better prevented than managed.
• Amitriptyline didn't work for me: it spaced me out so much, I stopped taking it after three days. So I chose to go a med-free route.
• I used to go for back and neck massages every week, and physio twice a week when things were bad (just after diagnosis)
• I saw a rheumatologist, but only for initial diagnosis and then yearly follow-ups.

This is what I've found has helped me immeasurably:

• Exercise every day - but building up very gradually
• Yoga - hatha rather than hot yoga
• I visited many alternative health practitioners and the only ones that worked - and they really did work - were craniosacral and ayurveda
• Psychotherapy. There is a strong mind/body connection with many fibromyalgia sufferers.

I was diagnosed 20 years ago, so I have lived with it for a long time.

[quote mineofuselessinformation]**@HeechulOppa* and @LookToTreblesGoingTreblesGone*, I will look into those, thank you.
10mg of amytriptyline isn't doing much for me at the moment. I'm going to give it another night and then step up to 20mg. As I'm off work anyway it should be doable even if I'm in a haze first thing in the morning (although I feel like that at random points in the day anyway).
I know you will all call me an idiot, but I promised to take DC2 to an event today (which they couldn't possibly have gone to on their own as they have a disability). Whilst I'm now feeling utterly wiped out by it, it's confirmed that I definitely need to take time off to get myself better.
I'm not feeling sorry for myself, as I know I will get to grips with it in time, but it's a shitty illness isn't it?[/quote]
You will get to grips with it, and it's a bit different for everyone for how they manage that.
I say to myself "pace yourself" and then I don't tend to overdo it. But yes, it's a shitty illness definitely.

I am newly diagnosed, but the rheumatologist thinks I have had it for over 20 years. I think the thing that kept the crisis point at bay till this year was being quite active, I worked with children and had started a small business doing pet therapy in care homes and then I went from that to nothing over night due to COVID. I have dogs and walk every day, and the rheumatologist said that doing that and having regular massage and chiropractic treatments as I have done for about 10 years were among the best things anyone with fibromyalgia could do. Of course 2 out of 3 of those strategies were not available and my yoga class stopped too, the consultant recommended yoga and tai chi as well.

I take 30mg Mirtazapine at night, and some Co-Codamol when the pain is very bad, the over the counter strength is enough usually and I try not to take it often. I have very stiff muscles and I find my thermostat is very unpredictable everything is worse if I get too hot or too cold and I seem to have a very narrow window for comfortable weather conditions now. I do get very sudden overwhelming fatigue and just have to lie down, and need a nap most afternoons. I find the sensory symptoms difficult, and have found things like socialising on Zoom almost impossible because of that.

If you want to chat to people then we do have a Chronic Pain board now, with a daily chat thread and quite a lot of us have fibromyalgia www.mumsnet.com/Talk/chronic_pain

Hi OP

Just wanted to add you need to buy a foam roller for your tight tense muscles. It's the only thing that helped - it feels like im ironing my muscles out when I use it and wow the relief is good. Also suggest taking magnesium - it helps calm the nervous system and is a must for fibro sufferers!

I also have hyper mobile joints like yourself and I would stay away from yoga as it exasperated the pain. Pilates is better. If you can very slowly build exercise into your routine it will help your muscles support the joints and thereby reduce flares which are caused by the hypermobility

Definitely pace yourself. This is the biggest most important piece of advice. I'm still working on it but now , for me, I do a task then rest , I look at my whole week and what I need to achieve and spread it out.

I'm currently off sick because ive been going through a bad flare but I usually work part time. I have two pre schoolers with underlying health issues as well so its all a lot to manage and just a really difficult stage of life.

All the best. Feel free to pm me

I feel so humble. So many of you have taken the time to reply, so thank you.
I'm finding it difficult to feel clear in my thinking, so I'm off to bed soon.
I'll be back tomorrow when I feel a bit better.
Is this what a flare feel like?

That's the thing @Evenstar, this time last year I was the fittest I'd been in years - I was working in lockdown, but had started doing proper exercise and had lost a bit of weight.
I had to stop before this all flared up due to problems with my knee and back (to the point where I could barely walk at one point).
The muscle problems sound very familiar. My leg muscles trouble me particularly (feeling like I've walked miles in my sleep), and my back muscles keep going into spasm despite using a tens machine.
@needtogetfit21, I'm sorry to hear you're having a flare. I'm sincerely hoping that's what's happening to me as I don't think I could bear how I feel just now all of the time. I'm writing this from my hot tub (not a permanent swanky one - I wish it was!), so I'm enjoying the lovely hot water. It's a true luxury. I don't currently feel too bad, but can go from that to bloody awful 'walking though treacle' type stuff in a ridiculously short space of time.
I think I'm going to have to say I can't set work at some point as I have some stuff planned but don't feel my brain is up to that level of concentration at the moment.
Today has been horrible - the realisation that this is unlikely to settle down quickly, and that it's not going to go away.
I'm seriously wondering how on earth I can keep doing my job.

@mineofuselessinformation

That's the thing *@Evenstar*, this time last year I was the fittest I'd been in years - I was working in lockdown, but had started doing proper exercise and had lost a bit of weight. I had to stop before this all flared up due to problems with my knee and back (to the point where I could barely walk at one point). The muscle problems sound very familiar. My leg muscles trouble me particularly (feeling like I've walked miles in my sleep), and my back muscles keep going into spasm despite using a tens machine. *@needtogetfit21*, I'm sorry to hear you're having a flare. I'm sincerely hoping that's what's happening to me as I don't think I could bear how I feel just now all of the time. I'm writing this from my hot tub (not a permanent swanky one - I wish it was!), so I'm enjoying the lovely hot water. It's a true luxury. I don't currently feel too bad, but can go from that to bloody awful 'walking though treacle' type stuff in a ridiculously short space of time. I think I'm going to have to say I can't set work at some point as I have some stuff planned but don't feel my brain is up to that level of concentration at the moment. Today has been horrible - the realisation that this is unlikely to settle down quickly, and that it's not going to go away. I'm seriously wondering how on earth I can keep doing my job.

💐 you will work it out.

My dilemma right now is whether to take a career break or muddle on. It would ruin us financially as my dh was made redundant and is trying to establish a business, we aren't entitled to any benefits (unusual circumstances , long story) but ultimately health is most important. I actually think I would've had a full on breakdown had my GP not signed me off right now. I was definitely heading that way. The overwhelm is unreal when you are trying to cope with physical symptoms which are so debilitating and impact your ability to get through the things you need to do

@mineofuselessinformation I gained weight in lockdown and that certainly didn’t help, before that I had lost 2 and a half stone and was eating really well and doing yoga. It’s really frustrating isn’t it?

The thing about flares (and looking back with the knowledge that being diagnosed has given me, I have had a lot) they will go eventually and the consultant reassured me that despite the pain they don’t do permanent damage to the joints. He emphasised that managing the condition is really key to being able to live with it, and mixing keeping moving and rest to avoid flares as much as possible helps.

At work you are entitled to reasonable adjustment are there things like sitting down more that would help you? I am not currently looking for work as DH is retiring and we plan to move in the spring, I am still recovering from foot surgery and realistically I won’t be looking for full time, possibly just voluntary work depending on finances.

I did manage to work quite a lot of hours when I worked in Early Years, but it was at the cost of having to sleep an awful lot and having significant pain, I didn’t know what was wrong at the time. I wouldn’t want to feel like that again.

@needtogetfit21, I guess you can only know by seeing how you are after your flare? That sounds like a plan to keep, even if you don't have a definite timeframe.

@Evenstar, your last paragraph was me for the last three plus years - I put it down to menopause and the hyper mobility and arthritis.
I don't think there are any reasonable adjustments that would work for me (teacher). I'm either there or not, expected to do 100% if I am. (I really don't think I could do my job sitting down although it would be lovely! Just being able to go and stand near that one student who's being a pain is part of the way I operate.)
It's really worrying me because I know the stress of it would still be a lot even if I went part-time. It's making me think that although I had major problems last term, they seemed to resolve a bit, but it was like a train hitting me this term. As soon as we were back to teaching, I was in extreme pain and feeling progressively more tired until I had to give in.

Sorry for the essay!

How well is my brain working....
@needtogetfit21, I meant 'plan to have'.

I don't know it anyone is still out there...
Both last night and tonight, I've spoken to DM and told her how terrible I feel, and how worried I am as I'm not sure if this is a flare or how I will feel from now on (my sick note says fibromyalgia possible flare).
Her response has been very 'stiff upper lip' to say the least - 'keep moving and you'll feel better', 'you've got to stop thinking like that', when I've expressed my worries about being able to work (who've also been sending emails asking questions). Meanwhile, I'm struggling with small things like doing a bit of ironing, and concentrating. (Fibro and making soup do not go well together, I've found.)
Maybe I'm trying to do too much. (Well yes, actually I know I am.)
I'm going to reach out to some support tomorrow to see if I can get some help to understand all of this.

Oh, and I've been given baclofen to try to help with the muscle spasms in my lower back.

Magnesium supplement and spray helps.
Learn to recognise the signs. What is normal tiredness and what is a crash.
If you crash, sleep. Doesnt matter how much.
Pace yourself.
Gentle exercise, yoga, pilates, swimming if you can.
Vitamin B12 and Vitamin D

Definitely you need to stop and rest if you are needing to. My late DM was not understanding some years ago (obviously pre my diagnosis). She was a nurse and a very high energy person, she would say things like “keep going, you’ll get your second wind” and expressed surprise when I was struggling to work and falling asleep with little energy to prepare food or even eat it some days. I think it was a factor in making me carry on pushing myself too hard thinking I was just lazy.

In rhe middle of a horrible flare after a good spell. Been in bed all weekend pretty much. Got complacent and stopped listening to my body and the warning signals. Grrr

Op your Q about a muscle being tense really struck me. My right shoulder is permanently up by my ear it’s so tense. I have to consciously relax it a dozen times a day but it’s been going on so long now that that shoulder permanently sits higher than the left one. It caused problems when the anaesthetist was doing a spinal block for an op a couple of years ago, she kept telling me to drop my shoulder but I couldn’t.

I’m in constant flare up but I can’t afford to not work, I hadn’t considered applying for pip, it would be a god send if I was eligible so could further reduce my hours. How likely is it to be successful, does anyone know?

expressed surprise when I was struggling to work and falling asleep with little energy to prepare food or even eat it some days I struggle so much with this that I’m now very under weight, I work but am too exhausted to prepare or, if DH preps it I may be too tired to eat!