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.

'Hoping'

Hi, welcome to the club! Yes it's good to have an answer but a but daunting.
I do work FT, in a desk job. I have flexi time which helps. And it's fairly low stress. I fall to pieces with stress. Mostly I manage. On bad days I start later, finish earlier and sleep in my lunch break. I work really locally or from home. Travelling wears me out.
I take two gabapentin and 1 amitriptyline 10mg at 9pm. Any later or any more, I'm a walking zombie the next day. I also take CBD oil on occasion.
I've never seen a rheumatologist and don't need an OT. I have paid for physio, usually to fix a specific problem, like my shoulders have seized up.
I did do a pain clinic course which was useful in some ways. I've got used to the pain, it's the fatigue I really struggle with.
There's a chronic pain thread under health where you may find more fibro people. I use a Facebook group for information mostly. It's called UK fibromyalgia private group. There are lots on there managing multiple conditions. If I can help any more, let me know.

I took amitriptyline for years. Worst thing I did. Bedbound zombie basically.

Got myself off it and now work full time!

My best advice? Keep moving.

I work part time. Pre covid I had a lovely work from home job where I could rest when I needed, unfortunately I have to go out to work now.
I stopped the pain killers due to side effects and just manage without.
Never seen an OT or physio but do find massage helps as long as they don't go anywhere near trigger points.

Work part time, would love to stop so much less stress when not working not worrying about time ect.
When working nap at lunchtime, rest up as much as I can during evenings and days off.
Only take paracetamol and evening primrose oil and massage.

Thank you for all of the replies!
It's good to know there are others out there.
I work full-time in a job which demands I'm on my feet, so it's difficult for me (and what brought me to needing a diagnosis after years of problems) - I'm a teacher, so no flexi-time for me...
My GP offered to sign me off for a while, or give me a fit note.
I refused both, due to having a trainee in tow, but I'm now thinking I might need some time to see if the amitriptyline helps???
Have any of you applied for PIP?
I'm just looking for a way to manage this, but I can't afford to stop working.
Again, thank you for the replies. I'm feeling very alone just now.

That's difficult. It's not as if you can stop to rest. No I haven't applied for PIP myself. I can do everything I need to and dh does the heavier stuff.

@Hullbilly, I live with DC2. They have a disability which means they can help me out with some things, but not all.
So, ultimately, for some things I have no-one to lean on. Im not having a pity party, just saying how it is (not that you implied that in your post!)
Im just trying to work out how I can look after myself and earn a living at the same time.
It's all a bit daunting just now, as you said.

Hi my mum has the condition. She applied for PIP and was successful - I don't believe this benefit is means tested. She also has a blue badge for parking which is great as it makes life easier. She did work full time but had the opportunity to take early retirement. My mum is under the care of a rheumatologist which is good as the condition gets monitored. My mum takes a low dose of amitriptyline at night, for her its like sleeping on a bed of feathers after a long time of painful nights. My mum has hypermobile ankles which she was offered surgery for and declined due to there being 6 weeks downtime. She regrets not having the surgery as she's now over 60 and surgery success is rate is poor and so its no longer an option. She attended a 6 week chronic pain course which really helped her. She's currently on a waiting list for a trial of nerve ablation (block the nerve signal) in her knee to try and rid her of the pain in one of her legs. My mum has bad flare ups during stress and extreme weather conditions. Best of luck

Yes sorry, what I mean is, for me I don't need pip yet. But these types of conditions are very variable, some people do apply and get awarded it, especially if they also have other conditions like osteoarthritis. We made some fairly big changes in that we sold our home so I could earn less and I changed to a desk job. If you have a pension, maybe have a look at the terms. Schemes differ but some allow early release for ill health. Even if you're not in that position at the moment, it might give you some comfort to know it's there. There are lots of things you can do to lessen symptoms. When I was first diagnosed someone suggested I start with sorting my sleep and the rest follows. I'd agree with that. Other things that help are vitamins, clean eating, low alcohol, gentle exercise, pacing, low stress. Keeping life simple. I won't lie, it's not easy. But many do manage it reasonably well. But do come over to the Facebook group. There's a lot of information and support there.

Hello! I was diagnosed this year. Glad you finally feel listened to

I don't take Amitriptyline, I'm on Gabapentin ( 4 tablets of 300mg, total 1200mg). It seems to help!
I work part time from home and have a very flexible and sympathetic boss, I work from my bed some days, and just sleep on the days when I'm flaring up. Also have a nap pretty much every lunch time!
I've started yoga which seems to have helped a bit.

I am 71 and have had fibromyalgia since i was 16 yrs old. The symptoms had been fairly minor up until about 15 years ago when all hell broke loose with a lot of pain and fatigue but I continued working full time and attending the gym. I put a lot of time into studying the illness and was determined to bet fibro but of course there is no cure. I'm in a really good place now with very little pain. The following helped me.

1. Have a determination that the illness lives with you BUT you make the rules. That pain or fatigue won't stop you from doing what you want.
2. Keep your weight down
3. I attend various aerobic classes for 8 hours a week, thats 6 days a week. Yep, the movements hurt and I drag my sorry arse away from the class but within minutes of leaving the class i feel so much better.
4. Epsom salt baths, say weekly.
5. A vegetarian diet and no/little processed food.
6. Keep warm.

I believe the biggest factor has been all the exercise that I do but it didn't happen overnight. I don't take any medication although i was on gabapentin for a few months but it turned me into a mad woman. Ie i couldn't walk straight, slurred words, in a daze. I am not a medical person in any way, shape or form. I decided that if fibro was going to live with me I had to take charge and fibro was going to have to sit on the back burner while I live my life. I'm not in the UK. I'm having a flare up at present which is trying and painful. I have been prescribed tramadol for flare ups but I try not to take them. There is a lot of research into this illness so hopefully one day the experts will come up with a cure.

I'm very grateful for all of your replies.
I'm still trying to process it all, as I was expecting to get a diagnosis relating to my hyper mobility and osteoarthritis.
At least I know now that my massive problem with sleep and sudden bouts of exhaustion have a reason behind them.
I hit a wall last night (figuratively speaking) and am now kicking myself for refusing being signed off - howling my eyes out at lunchtime to a friend in the staff room was not a good look.
I think I'm going to take some time off to get the amytriptyline on board and get my head around it all.

Sounds a good plan.

taking some time out sounds like a good idea.

Sorry to ask another question - do any of you have muscles that just won't relax?
I don't mean muscle spasm as such (although I have that in my back and hip for different reasons), I'm talking about that the muscles in the backs of my legs (thighs and calves) feel tense all of the time. It stops me from falling asleep.

Oh, and I've told work I'm taking at least a week off.
The people who I emailed have sent back supportive messages, so that's good.

Yes, i have muscles that don't relax sometimes. It's like an anxiety. I suggest you get a weighted blanket. I weigh 64kgs and I use a 9kg blanket. It nicely pins your body onto the bed and stops the anxious movement. Excellent during the winter but maybe a bit hot for the summer but you could just spread the blanket over just your legs. On Facebook there are some fibro groups that you can join. It's always good to read what others are saying and the solutions they find for themselves. All the best.

@TacCat49, do you mean restless legs?
I don't have that (I know it's a bugger to have BTW).
It's more that my muscles feel tensed up, and I need my body to feel totally relaxed before I can sleep.
Yesterday I got up and my legs felt as if I'd done a route march in my sleep - eapeciallly my shins for some unknown reason (or maybe fibro - that's why I'm asking).
Not so bad this morning so I'm hoping the amytriptyline is helping.

I have had restless legs but not now. When I finished taking the Gabapentin the restless legs disappeared. I can't explain that one.
So I'm talking about a restless anxiety that the body can get anywhere and the weighted blanket really helped. Have you tried wearing long, tight sox to bed? Anything is worth a try.

@TacCat49, it sounds like the blanket might the worth looking into.
I'm mid-fifties, so it would probably be too hot in the summer months!
It's so weird how suddenly I can't get my muscles to relax (although it's been coming on for a while), as I used to practice yoga and got very good at allowing my thoughts to let muscles relax IYSWIM.

I reckon the weighted blanket is worth a try. It certainly helped me. Keep up the yoga. I believe that fibro sees any form of exercise as the enemy. Exercise has certainly helped me a lot.

Not me but a friend - she has chronic pain which she deals with but a fibro flare up would make life unbearable. She has found a gluten free diet has meant no flare ups for months.

I have a diagnosis of fibro but the only pain I ever experience is pin prick sensations. I'm on amitriptyline to help with insomnia. I take 30mg a night but sometimes dont take it until midnight. It doesnt leave me groggy at all. I was also taking 20mg in the morning. Again, no grogginess. Only side effect has been a dry mouth which has caused gum problems. It's also lifted my depression and given me more energy. I still get some pin prick sensations but not as many.

20+years of fibro here OP.

Your legs/feet literally carry your body's weight around more than any other part of you does, so will actually complain quite loudly.

You say you're on your feet all day and I can truly say that that is where the tightness of the muscles is coming from. Usually when walking you transfer weight evenly from one foot to the other, so each leg rests/works/rests/works etc.

As a teacher I daresay you do a lot of standing, with minimal walking around. The longer you stand, the more weight your legs and feet carry with no relief. The tightness then begins to build up in the muscle tendons that attach to the bone which is probably a reason the pain is beginning to manifest itself in your shins. I began to find a similar problem once I became post menopause at around 55 years old.

This are the steps I take to enable relative pain free walking:

Massage problematic areas every evening - I use a cheap moisturiser with something like almond oil mixed in, and after a bath spend 10 minutes or so massaging.
*Gentle stretching routine 10 mins - morning and night.
*Ditch the heels - my shoe heels now are no more than 1.5 inch in height, and it definitely takes the stress off the shins.
*As pps have said, I also use a weighted blanket on my legs in bed, only mine isn't a modern thing, but a feather eiderdown which I've had for years.
*Wheat bags - heat helps muscles to relax, and as my feet get very cold even in summer, these work very well for me, as cold feet equals no sleep..... for me anyway.

Vitamin D -discovered I was deficient. So take a regular dose each morning - has to be morning as it helps to regulate sleep too.

Vitamin C - This has been the biggest improvement for me. I can now after 4 months of daily doses stand for longer without pain, ride a motorbike for an hour or so before needing to stop, still enjoy gardening. walk almost a mile before needing to sit down. etc

*Keep the weight down
*move as much as possible - don't stop bending, stretching, walking, dancing, just do it in smaller amounts as and when.

I regard Fibro as a shapeshifter, never the same more than 10 minutes in a row, so almost impossible to get to grips with - or so I thought in my early painful, scary days of living with and accepting this. But in all of it I simply refused to roll over and cave in because I had - and still have - a life to live.

Get annoyed with it, refuse to do what it dictates to you - at least most of the time - listen to your body, try everything you can because what works for one doesn't necessarily work for all. ....and don't apologise to anyone for having this. If they don't like it, don't believe it, or whatever then tough, it's their problem not yours.

You can and will get through this - I honestly wish MN had been around when fibro hit me - there is so much support here, so keep asking .

43HisSplendidSilentSun
Well said.