I have had back pain and undiagnosed pelvic pain since I was in my teens (now 32). But about 5/6 years ago I woke up one day unable to put any weight on my feet. That turned into knee… hip… shoulder etc etc. After waiting nearly 3 years for a rheumatology appointment and some back and forth with tests and physio, it was discussed that I most likely have fibromyalgia (along with hEDS). Basically over half my life I’ve been in pain with it sometimes getting so bad I thing I could/have collapse, vomit or scream.
I have just come home from another frustrating physio appointment where he examined my knees (they crunch) and gave me a couple of exercises. We discussed my thoughts on Fibro as a diagnosis and, well, things got emotional…
I am really struggling with accepting the diagnosis for two main reasons:
1. I can’t bear the thought that “this is it…until I’m dead”. I know this is a very macabre way of thinking and I know there’s plenty of ways to manage the symptoms but I’m tired and emotionally drained so cup half full can wait until tomorrow (or next week)! I also struggle with the fact that very little seems to be known about the condition.
2. Although I am exhausted and in pain every single day I am a stubborn person and push myself to have a “normal” life. Work full time, gym 4 times a week, cooking, cleaning, yada yada… but that makes me feel so guilty (especially writing a post like this). I think I have it “easy” and I don’t want to complain because I manage. But I am managing and not enjoying.
We talked about pain clinic and acceptance therapy but I don’t think I am in the right mindset to go with an open mind and see what happens. Physio agreed.
Did anyone else feel similar? How did you come to accept it?
It took me 12 years to get a diagnosis and I think that finally having a *name* and not just being dismissed with tests are clear so it's not xyz....
Counselling and positive mindset definitely helped me in accepting that I had to learn to live with the condition, but took me a long time to really put self management into practice
Accepting fibro doesn't mean giving up. It means you accept you have a lifelong condition that you need to take in to account as you live your life. Like, how long was it before you accepted you didn't have eyes in the back of your head? Or wings? ( No more jumping off the roof😭hoping for actual lift off?).
When you accept, you can make those adjustments. At that point you can say, probably with a bit of swearing, ugh, so what do I have to do to accommodate the fibro?. And remember, Not jumping off walls ect will like help fibro too, so birds with stones?
But seriously, attending to good sleep? Eating well? What suits your fibro system. Learning to relax, take meaningful breaks in your day where you can fully relax, switch off etc. Stop overdoing. Accept if you do, you likely take from tomorrow and maybe for a week or more of tomorrows. Remember the sleep disorder part of fibro? How deep restorative sleep is not guaranteed? It means you shouldn't keep going til the tank is empty because it leaves so much needing repair for a measly fibro sleep, meaning you risk pain flaring.
All you need to do iin acceptance, is be sensible/honest around your limits. Simples hey? Well maybe not, but keeping this in mind will help. Unless you get cross with yourself, beat yourself up and jump off the roof anyway because you are determined to believe it's all about what you believe, and you do still believe you can fly? Dunno if my musings might help?
I don't really see Fibromyalgia as a diagnosis I just see it as a place in a filing system of symptoms.There are aspects of having the name "Fibromyalgia" attached to me I find useful, like understanding all the comorbidities that go with it. I find it comforting that it is not odd to have a ridiculous amount of other conditions linked to fibro, while it is very sad that so many of us have this at least I know I'm not crazy or a hyperchondriac anymore.
I go to the gym everyday and I do the hardest classes they have, I find the pain I get from this easier to deal with than the thought of getting weaker, no one would believe I have fibro there. I don't have a career but this is not just bc of fibro and more to do with social phobia and other conditions I have.
An important thing to remember is that nothing ever stays the same. Even if the pain stays the same, which is unlikely as there will be good days and bad, but your relationship with it will change in time too. But you do need time.
A very well written reply from AL10 offering great advice, I totally get it that feeling of really this is what it’s going to be like till I’m pushing up the daisies (as the saying goes) i agree it is about getting the right balance in order too live day too day with this unwanted condition and I do find pushing too hard does mostly result in payback with pain fatigue, I find there are days which go fairly well and I’m in a positive mindset and I focus on family, friends , all the things that make me feel good, then days like now when I’m feeling unwell and come too a halt, then I have too keep telling myself don’t fight with myself , beat t myself up ,go with it and wait for it too pass(truefully im still learning not too do this) I read posts here and realise how many thousands have Fibro @other conditions and it reminds me I am not alone . You do sound like a true Fibro Warrior juggling all this, be kind too yourself and perhaps slow down on activities ie the gym as you work full time ,I just try really hard too write some friendly advice but I totally understand xx
I can relate l have a resilient , personality and have done a lot despite fibro.But l also hit these mental blocks, quite often . It's draining , everyone around me sees me as , capable and l almost feel afraid, to tell others , about the positives in my life . And definitely all the struggles , as there 's the whole you look so normal but you do A or B..As tired of being the one who just copes, with everything! And this then adds to , me "coping" & being overlooked for support.
I cant really say l have accepted, that l have fibro, but l realise that l do live a full life despite, the condition. I would guess I'm in the grief cycle , but stuck as there are moments l feel normal & briefly forget all the struggles, that's mainly when l'm in nature!
Maybe this is of some help to you or relatable in some ways...
Acceptance is the most important thing with fibromyalgia, I questioned everything when I first had it, saw many rheumatologists , had all available tests, I was convinced it was something else b ut when I finally accepted that this was fibro, along with Arthritis I felt more contented.
I must congratulate you on working full time, and going to the gym four times a week, do you rest in between, or pacing as we call it, maybe you are pushing yourself too hard , you are right In Saying you manage, I’m the same , I try and do as much as I can but sometimes we have to give our body time to recoup, if I do housework etc, I find if I rest for just a while I can carry on to do more , take care
Hi @Hidden - I also have hEDS which you will know is a genetic disorder, so you've always had it, so look at what you have so far achieved. That in itself is therefore going to last you the rest of your life, but doesn't necessarily mean that's it, or you'll get worse. Personally over the past few years I have improved, but am still a work in progress!
You have received much relevant advice above; do take it onboard....do listen to your body, & learn to pace yourself; this was the hardest thing for me to do, &, as a retired physio, I knew better, but still tried to keep on doing everything for way too long....
You need to learn to be kind to yourself, & to find what may help you, which is often a combination of things, e.g. I use exercise, a breathing exercise, distractions such as reading/listening to music & CBD; we're all different, so be open to looking into what may help.
I've refused CBT, & have never been offered a pain clinic nor pain management course; that doesn't mean you can't explore what may help you in your own time. I was (& still am on occasion) stubborn like you too; think many of us are the same, but you'll get there, & life will improve that bit more.
Don't worry about the fibro diagnosis, but do know that it's way better understood now (a bit like hEDS!)
Your reaction is so normal. Resentment, anger, fear, felling hard done by, jealous of healthy people etc. My symptoms at 20 ISH and only diagnosed at 63! I am very angry especially as I was always thought of as a lazy, moaning hyperchondriac. Get as angry and afraid as you need to. It's like a grieving process and takes a long, long time to mourn the loss of the life you had mentally planned for yourself. Sending hugs xx
I think it took over 10 years for them to diagnose me with Fibromyalgia, I knew quite alot about it but also know that there is no cure for it so felt kinda defeated as I was just now labelled with this condition and knew then it would be a battle as they would blame the Fibromyalgia for every symptom I got and that is exactly what is happening.
I found it so hard in the beguinning, I had to sadly give up my job as I just was too ill to Continue I also have arthritis and other Conditions aswell though. Was registered disabled over 10 years ago. It was so hard to adjust to a different way of life. But I can say that is now for the better as things have got worse for me. It was so hard in the Beguinning. I felt frustrated, angry, and devestated at the loss of my former self. I now have to. Con ncentrate on the simple. Things I can do. And be greatul for that.
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