The worst thing about fibromyalgia

When I was younger, I played a game of Would You Rather with my sister. I remember asking her, “when you’re older, would you rather lose your body or your mind?” What a lovely, cheerful question to ask. Physical health or mental health? Paralysis or dementia?

I remember my answer. I said I’d take physical health because if I lost my mind, at least I wouldn’t know about it.

It’s a ridiculous question for many reasons, but it’s still an accurate representation of my biggest struggle with chronic pain. When your mind is active but your body can’t keep up, it’s the biggest test of your patience.

Friday was Fibromyalgia Awareness Day. Each year I think about the best way to utilise the day; what can I blog about that will grab your attention? how can I raise awareness? and what can I tell you that you haven’t heard before? My awareness day posts never end up being very good – I think I feel a bit desperate when I write them and it comes across in my writing. As it happens, I wasn’t well enough to write one on Friday – go figure – and so you’re getting it today because, quite frankly, we should be raising awareness of invisible illnesses every damn day. We need to be better equipped at caring for and managing mental and physical health issues that cannot be seen. We need to see beyond the smile.

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I’ve decided that this year, I’m going to tell you a story about something that happened to me recently.

So, managing fibromyalgia often means doing as much as you possibly can whilst you’re in a small amount of pain and then dying inside whilst you crash and flare. (This is obviously not the advised way to manage your pain, but let’s be real, this is how a lot of us do it.)

Sometimes, when I’ve been taking it easy and doing things properly, I still crash and flare, and often when my crash and flare is really bad, I think ‘there must be some other way to deal with this, there must be something we’re missing’. And only when I get to the point where I can no longer cope with the pain, I’ve reached my limit and hit breaking point do I ask for help. I go to the doctor.

Now this is rare. If I go to the doctor, I’m admitting defeat. I do more preparation for the doctors than I do for job interviews; I get sweaty and nervous and do my best to sound like a sane, normal person despite the fact that I feel like I’m cracking up.

On Tuesday I went to the doctors because one aspect of my health has got really bad. It’s got so bad that it’s no longer manageable and something has to change. It’s been over a year, I’ve kept notes, I’ve done research, I’ve checked symptoms and so I went in prepared – pretty sure that I knew what was wrong with me.

Know what he said to me? “Yeh, it’s just your fibro.” Know what I did? I cried.

Only when I’m at the doctors do I cry about my pain. It sucks. I want to appear like a knowledgeable, rational person but, as I try to articulate my pain whilst my voice breaks and tears roll down my cheeks, I know that he thinks I’m an emotional and hysterical crazy woman. (By the way, this is a great blog about exposing medical sexism and gender bias, and I believe it’s a very relevant part of the way my chronic pain has been managed over the years, but not something I’m going to go in to right now.)

I cried in the pharmacy, I cried in the car, and I cried when I got in the house and R asked me how it went. Big sobbing heart-wrenching tears.

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Thankfully, it’s not very often that I feel like this. I reckon once or twice a year you’ll find me sobbing in a heap on the kitchen floor, being picked up by my wonderful partner as I ask through the tears, “why won’t they do anything? This can’t be okay, this can’t be it.”

I normally indulge myself in uncontrollable floods of tears for no more than twenty minutes or so, then I pick myself up, dust myself off and make a cup of tea. This is the life of a chronic pain patient.

Generally, it is what it is and we all crack on with our lives. Often it’s fine, sometimes it’s absolutely fine, but occasionally it’s really quite shit – and what’s worse is that those really shit days are often the days that you’ve built up all your energy and courage to ask for help.

Just in case you’re now worrying (because you’re lovely readers and you do that sometimes), I am of course fine now. I went to a black tie function for work on Thursday (didn’t throw shapes on the dance floor like I wanted, but sat and ate a fancy dinner), and I spent this weekend doing one of my favourite things; life admin. On Saturday I cleaned out my utility room, organised the shed and got my car cleaned, and on Sunday I pulled up weeds in the garden and put on 300 loads of washing. I did all of these jobs until I was in too much pain to carry on, and then once I decided I should probably stop I did a few more jobs and then a few more jobs. And then I crashed. But then I ate a roast dinner and a chocolate fondant so it was great – don’t judge me.

By the way, if you would like to read my more positive thoughts on fibromyalgia, I took part in this group post about the things that I’ve learnt since having chronic pain.


 

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10 thoughts on “The worst thing about fibromyalgia

  1. This pattern is me too. Once or twice a year it gets to me and I’ll hide away sobbing but otherwise you just carry on.
    I remember a doctors appointment a few years ago where I’d had blood tests and rather than tell me over the phone everything was clear as they normally do they wanted to meet. I got my hopes up so much that they had found something that they could help with. But they just wanted to take my blood pressure for the records. I didn’t manage to get to the car before I broke down and only managed to hold it in for the few seconds it took to lock myself into the bathroom at home before breaking down again.
    People just don’t understand that the doctors don’t /can’t /won’t help.

    1. Oh that’s so familiar. It’s the weirdest feeling hoping that the doctors will diagnose you with something worse than you already have. (Not that I want something worse – just something people have heard of and will damn well treat!) Hope it’s a long, happy time before your next bout of hiding-in-the-bathroom time. x

  2. This is one of my biggest frustrations about a fibromyalgia diagnosis. Everything that follows is “just your Fibromyalgia”. I know too many people who have gone on to find out that no, the symptoms aren’t being cause by fibromylagia, they’ve been caused by undiagnosed problems-e.g. lupus, arthritis, underactive thyroid, endometriosis and Lyme disease. This diagnosis often comes years late because of the “must be fibro” attitude.

    And I completely understand and empathise with your feelings around going to the doctor. I get so anxious I want to cry as soon as I enter the room! I’ve cried more times than I’d like to admit.

    I’m glad you are feeling a little better now but if it’s something you are convinced is an additional problem, please advocate for yourself. Take someone with you who’s very to the point and can get your case across well (that’s what I do. I always take someone with me now as appointments undoubtedly go better).

    1. I was told just today by a Spine Center Physicians Assistant (that I’ve been waiting to see for 2 months) that my latest steroid injections weren’t successful because my pain is being caused by a combination of my lupus and fibro. (This is the same doctor’s office that I called a few weeks ago because I had fallen and was in pain and the nurse basically hung up on me) The PA today told me that I was going to have to work with my rheumatologist on pain management. Ummmmmm…I have 2 bulging discs and osteoarthritis and I really wanted to say, “don’t pass the buck, lady” but that would have been rude. Lol Instead I just explained that the rheum will not provide me with any additional pain mgmt meds/ideas and could she suggest something else? She finally suggested physical therapy and I’m happy with that. It worked really well a few years ago and I’m hopeful that it’ll work again. I don’t think she would have suggested it at all had I not pushed her. Where did our quality of care go?? I understand that doctors have too many patients and not enough time to see them but that’s not my problem. This is my life. I’m doing what I’m supposed to be doing. I wish the medical community would do so as well.

      1. This is exactly it. I understand the challenges faced by our healthcare systems, but how have we got to the point that this level of pain is acceptable without any support or care plan? I’ve also read so many articles about the woman who went to A&E because her stomach cramps were getting worse and thankfully, the staff saved her life before her stomach exploded. If that were me they’d have said, “Fibromyalgia? Go home love.” And boom, my stomach explodes. I might make sure that when I die, my gravestone reads, “I told you so.” (Dramatic much?!)

  3. Bless you I can totally relate.
    I was diagnosed 8 years ago, and whilst I’m able to work full time this does obviously impact on my health and family/quality time.
    I had a really bad year last year between one thing and another, including a skin cancer scare, and culminated in a month off work with flu. And when I was sobbing in the rheumatologist’s office, and my husband was having describe my symptoms because I couldn’t string a sentence together, the ‘professor’ looked at me aghast and said …….”you’re fine it’s just your fibro! “

    1. Nooooooo! Oh my goodness, that is shocking. What is wrong with health professionals in the chronic pain field? Surely there must be some that aren’t quite so dismissive? And if so… where are they?!

    2. “You’re fine”??!! I don’t think we’re fine. I don’t think we’re fine at all even if it is “just” our fibro. I bet if the medical professionals lived with a diagnosis of fibro, they would do everything in their power to feel better and to exhaust every possible diagnosis before “crying uncle”.

  4. Hello! I’m so sorry to hear that you were feeling so poorly and that your doctor wasn’t helpful. It is very frustrating to feel like you’re going to die (maybe I’m being overly dramatic but I don’t think so 😉 ) only to have the doctor treat you like it’s only a hang-nail! Ugh! I also dread visits with the doctors. My Internist tells me to lose weight every time I see him, my rheumatologist tells me to exercise and avoid stress, meanwhile just getting a doctor to prescribe physical therapy took 2 months! But anyway, I’m very glad that you are doing better and that you were able to enjoy some gardening and chocolate this past weekend! Blessings

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