Since being diagnosed a few months ago I’ve had quite a few flare ups, I take medication from the doctor, plus vit d, magnesium citrate, cbd, use Epsom salts to soak my feet in, have tried a flotation tank, go to a fibromyalgia support group but had to stop as can’t go at the moment , I take over the counter pain killers too when I need & am in the process of being referred to physio. Just wanting to connect as feel & am so isolated at the mo, any other recommendations to help fibro appreciated too thank you kindly
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Fibro_fairy
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I was only diagnosed a few days ago, but have had it for 30+ years. During that time I was diagnosed with depression and given sertraline for that. I believe that this must help with the pain, as my pain symptoms are nothing like as bad as others on here experience. I do have other issues that the sertraline doesn't address, but the pain (for me) is manageable.
Thanks for your reply , I’m glad your pain is manageable , know mine has flared up & is bad due to a lot going on in my life at the mo , I’ve had it for 15 plus years , but only diagnosed a few months back, yes I was on sertraline for years but not anymore , came off them, I will stick with amatriptiline and keep researching / looking on here for things as such a helpful & friendly community & good when you don’t get out much or see people , sometimes you just need to connect and chat to people as I think me being isolated has got me down / low
I think here on the forum does help us to chat and sometimes get advise, I was just advised by doc too take vitamins too try boost my immune system as I seem too catch anything that’s going around, I hope the physio will help you so do let us know how you get on The fibro group will be used too people checking in and out as we can never tell what our day is going too be like so good to attend when you feel up too it on the day. What meds did the doctor give you ? Is that fairly recent trying something. Xx
Thank you for getting in touch. Yeh I will definitely pop in on here as it’s nice to read and connect with people.
I would have got bk to you sooner but had phone problems.
And yes as soon as my physio comes through I will let you know how it goes.
The doctor has given me amitriptiline only a few months ago , but wanted to put me in something a lot stronger but I don’t fancy doing that due to possible side effects .
I hope your ok & thank you again for your message xx
I've got no advice sadly, as in the same boat. But just be kind to yourself, remember you never asked for it. And now just find a hobby you can do without draining yourself. When I'm up for it, I make myself go for a 10 minute walk . Take care
Hi again - Good to hear your next step being physio. Just that often goes wrong, cos they make us overdo it and think they're the experts. So we often go thru a school of hard knocks until we realize where our sweet spots are. There is almost nothing we can't do, but some things may be only minutes or seconds. So trying an stretching/exercise class drove me to tears till I realized I can only a quarter of what the old people there could... Or yin yoga (long stretches) or qi gong (slow movements) were recommended to me as great help for fibro, but too long and slow for me. Best for me was to learn many things from many physios, but then break them down for myself. And the experts best for my local pains were all gentle - osteopathy, acupressure, cryotherapy, and now I DIY - self-applied acupressure, stretches, exercises learnt from youtube, a massage gun and arnica cream too - I keep my local pains down to 5%.
This is an example that it's essential to learn the sweet spots of every activity, how much we can sometimes overdo it without too much of a backlash on our overall Ache.
You've started on supps - there are about 40 that might make sense depending on your symptoms. Also good to find out doses, times, concentrations, good companies, least fillers. A better way than meds, cos as you say the side effects can be horrendous. My attitude is I prefer a brain with pain than no brain with no pain. Incl. amitriptyline in my case - but it does have quite some medical evidence, so generally I'd try that and praps pregabalin if you do tolerate meds fairly well (but not if you don't).
Generally it's ideal to track, learn to describe & analyze your symptoms & triggers & treatments. Pain may not be our main focus, but sleep and IBS first.
And mentally it's important to allow ourselves to grieve, to accept and then get motivated to improve, even if it's only the quality of life and better coping with pain, fatigue, sleep, IBS etc., whilst if we have stuff like anxiety or depression going on (and even if not) I'd always recommend CBT or ACT, relaxation, mindfulness etc. rather than meds.
OK, no idea if this was of any help to you, feel free to ask for more...
Thank you so much for your reply I was thinking re ; physio I hope it’s not painful , but I will go see & you know if it is I will say so 🙏🏽
Yoga I’ve wondered if I could manage it, I may try
I’m sad tho because I use to , back in the day, go to the gym go running etc but couldn’t now
It’s sad that I’m a young woman but feel like im in an old deteriorating body
Plus ,people say oh you look lovely and they think your ok just because you look ok & prob because you say “I'm fine”every time someone asks if your ok
Because you are so use to the pain and just smile but inside your crying so I understand re the grieving bit 🥺
Re arnica I use that too / re vitamins etc yes I agree it’s finding out what’s best for you ( I use to work for a herbalist & in health food) , definitely always try source good quality vits ,with no binders and crap in them ,as I know too well what things can go into them
Sleep I need to work on as my insomnia is bad and has been for the last 2 and a half years , I do meditate but just doesn’t seem to touch me nor amitriptinine 🤦🏽♀️
But finding just everyday thinking hard too some of it is brain fog due to fibromyalgia but some of it is from trauma & ptsd it’s like my mind goes blank
But I will continue to keep on keeping on an going for counselling
Anyway hope my message makes sense as a bit garbled and thank you again for your message much appreciated & hope you are ok & I wish you all the best too
Yoga I do in regular 2-3 minute stints, each exercise basically for about 20 seconds, with breaks as long as I need. Did a one hour online class the last weeks or rather about 10% of what they were doing, another 10% doing something similar and the rest just resting (& typing...)
Despite short times of grieving, I'm in acceptance mode, not usually sad: I'm amazed how fit my body actually still is - good to hear my wife call my body athletic yesterday (not without nostalgia of course) and that and you have now made me think we need to be happy that we under the seemingly old deteriorating body are still as young as we feel and want to be inside, just our challenges have become different. I was actually wondering whether that's the reason why my body incl. muscles & weight still is in shape. (Took a year after 4 months of amitriptyline to get my weight back down again though.) Of course I'm doing only 10% of what I used to, but I still do its max. and I can feel and see that that helps a lot. 10% is the new 100%. Savouring and relishing what I can in this slow mode.
I do explain a bit when people say I look good. If I've explained before I just try to remember to say "Thank you, that helps" - a bit tongue-in-cheek. The only person who I say "I'm fine" to is my wife, cos I know she knows everything and she sees my body crying in my eyes. Since MCAS has brought my energy down even more in the last weeks I've been summing it up "stable on the lowest level" - also sort of ironic I spose.
Wow, great you having worked for a herbalist & in health food, that probably gives quite some basics to build up on, also you know where to look, so quicker.
Sorry to hear about your insomnia too. What helps me most there after reducing all triggers I can find (30+) is passiflora and GABA, a short cold shower before bed and again at night (20 seconds) if my cortisol goes up. I've had to work on it even more closely, because Chinese acupuncture is helping my fatigue but also decreasing sleep, due to it stimulating cortisol. So I've got back to 8-9h of fairly deep sleep (4-8 breaks, try to keep under 1h if poss.) If nothing else helps and I'm desperate I use Yoga Nidra as relaxation and sleep substitute, have you tried that?
Are you saying your amitriptyline helps you a bit or it doesn't?
Yeah, I can imagine fog & PTSD making thinking even harder. That's why I don't like my brain being dulled on top of that. Got a grip on all my trauma and anxiety way before fibro, but have still found counselling helpful (once I found the right person) just to work on everything that I can work on. Just applied for a (German) online pain/fibro course and study and it turns out it will be ACT, something I've always recommended but only nicked things off of ('radical acceptance'), so I'm raring to go, even if it's only titbits I'll learn.
All made sense except amitriptyline, no worry - hang on in there!
Well done to you we all have to be very proactive in our own health care nobody is going to do it for you. I can’t take statin’s so I have a mixture of nuts to help keep levels steady. I also use an Acupuncture pen to help with pain relief can be very effective and the sensations are off the scale on full power. The. Physios can only offer you their best opinion on our situations, my last encounter with a physio nice young gig ask me to do a lunge don’t worry I’ll catch you if you fall well I tried and we had a brief romantic embrace my knee just gave way.
Statins: Nuts are enough? I eat them as part of a Mediterranean diet and loads of supps, but not easy. I do actually tolerate statins, but want to spare my body them, and it's OK for my cardio.
Can you remind me what an acupuncture pen is? Is it self-applied electroacupuncture?
Yes true we are the only ones deep down that know our own bodies & need to do whatever we have to do that we can/ are able to do
Yes I have nuts and seeds prob as I’m not a great eater as in proper meals , I tend to have salad , fruit and lots of super foods & raw foods & am vegetarian
I have seen those acupuncture pens and once went to see a lady many moons ago who used one on me I need to get one so thank you for saying about them
Bless you re your physio
Thank you again for your message & I wish you all the best
Yes I have nuts and seeds prob as I’m not a great eater as in proper meals , I tend to have salad , fruit and lots of super foods & raw foods & am vegetarian
Now that sounds like as proper meals as I've ever heard! ;-D
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