I feel people don’t take it seriously

[Efavitage]

I had fibromyalgia for nearly 10 years now and in that time I’ve tried my very best to manage my pain. However over the pass couple of years the pain has definitely got worse, I’ve tried to talk to people including my GP but I feel that they just think I’m making it up. It’s like they look at me and see a me walking around do day to day activities, going to work ( which is pretty physical ) and think there is nothing wrong with me or that I’m just lazy.

but I’m in extreme pain. At the point I don’t know what to do and all of it is really making me feel really low.

any advice is very welcome.

thanks

Lily x

[Echoblue]

the difficulty is that there is no “standard fibromyalgia”, which is ideally what clinicians want so they can tick the boxes! Personally I found the biggest change in managing it in myself is that I have learnt to recognise when a flare is beginning and act on it there and then. For me, I get an early warning with achy wrists and ankles!! No idea why, but it’s like a band around them. If I ease right back on stress/what I am doing at that point, I can recover a flare really quickly. I have learnt that you can’t “plough on through” as my body will just hit me harder and harder until I am completely floored!

I have also found doing more movement has been so helpful, anything that involves stretching my muscles has been particularly useful. Not over pushing, or overdoing things, but movement all the same and have now been able to return to the gym and have found working particularly with stretching my triceps and shoulders has paid such dividends and I am experiencing less pain as a result.

I do hope you are able to find what works for you. Learning to listen to your body is not easy, but if you can begin to understand it, it will be so worth it. Good luck 🤞🏻

[Gigiruth]

Hi EfavitageI share your experience of people not understanding, sometimes not believing. Fibro varies so much from person to person and day to day.

I decided I do not have enough energy to use lots on trying to explain to the resistant or fibro ignorant people who seemed critical.

I know inside I try my best and I am genuine.

We cant educate the world,we need our energy for our own lives.

I changed how I felt about my perceived criticism from others. Fibro is very hard to understand if you dont suffer from it.

Many people just dont understand it.

Take care of you

Gigi

[Cat00]

Yes I find fibromyalgia irritates doctors or at least they are disinterested. If it wasn't for the internet I wouldn't know anything about our condition. I carried a lot of disbelief and self loathing around for years until one day I found a book that told me that all these comorbidities existed alongside fibro. I'd been going the doctors for years with different ailments like IBS and recently bladder pain syndrome and thought I must be a hyperchondriac or crazy. But then discovered that actually these conditions were commonly associated with fibro. If any doctor just once had bothered mentioning that they could have saved me years of turmoil.

[fibrogirl41]

hi I feel like that a lot, I have had no help from my GP either and been to specialists etc, and I suffer from horrible anxiety too and I don't like it. I was wondering if you have tried the perrin method I have heard it helps fibromyalgia and hydrotherapy. I hope you find something that works x

[Merrrm]

I have been most fortunate in having a particular Gp at the practice who a) is understanding about fibro and b) treats me like a responsible adult where my meds are concerned. I tell her when I want to try something else, she checks its not contraindicated and discusses the pros and cons and then I try it for a month initially, we review how its going and usually extend the 'trial' for a couple more months after which time we agree if I've really benefitted or not and either continue or discontinue the new med. This is how it should be for every one. But.....she's retiring in April.....and there is no one else like her at the oractice or in the area (she's been looking on my behalf)! The thought of being treated with disbelief, seen as a hypocondriac...having to fight to keep the control I currently have over my meds....is all causing such anxiety and flares with mega pain and fogs. I'm going to be going back to being treated by Gps like most fibro patients are..abysmally! My advice is shop around and see if there is a fibro friendly Gp anywhere close enough for you to access. It will make such a difference for you.

[Yassytina FMA UK Volunteer]

Hi lily , working can certaintly put more pressure on someone that has Fibro so must be very hard too try and paste yourself, that’s my key pacing as best I can(not at work now 61) I do think your doctor must take on board that you are felling low , the best thing at night is my soak in the bath as it does help with pain , my body likes warmth and differently not the cold. I hope you get an appointment very soon and have a chat with your GP @ don’t be fobbed off, have they adjusted any meds you are currently on ? Sending hugs xx

[Filey]

I have had or was diagnosed with fibro approx 40 years ago and a I am still struggling at times. I don’t think I ever have a pain free day and I’ve learnt over the years to cope with that ….it’s me now. But when the pain gets unbearable as it is at the moment in my feet I go ask for medical help. It’s not always forthcoming and is hard to get. I am also having help with my mental health brought on by the pain and the feeling of hopelessness. Not every pain we get is fibro and it’s always best to get it checked out as I am doing now with my feet albeit a slow process. We all need to pace ourselves and listen to our bodies .

[Efavitage]

Thank you.😊

You don’t know how much this means to me, it’s good to know that I’m not the only person who feels like this.

Thank you for the advice and support it really does mean a lot.