Coping with Fibromyalgia in early adulthood

Hi @Isabelle

Sounds like things are rough, I really feel for you and I completely get where you're coming from, you're not alone.

I actually went through an incredibly similar experience at that age as well. I too received a diagnosis of Fibromyalgia, but I'm not a 100% sold on the diagnosis to be honest. It was a conclusion they drew after a good year of ruling out other conditions.

I'm now 30 and no longer working in a place that causes me terrible pain. When I was at work and miserable, I was the same way, trying to do as much as I could but it cost me my physical and mental health. I very near committed suicide--at work--because I became so depressed with both my condition and the fact I just couldn't do things that I used to. Something that stuck with me is something a coworker said, "No one else is going to stand up for you, no one else is going to take care of you, you have to do that." I realised noone at work gave a shit about my condition, so I had to start. I was terrible at standing up for myself back then and I hated putting my foot down. When I finally quit my job the weight that came off my shoulders was incredible. Even though I'd had a serious lapse in judgement and had gotten so close to offing myself, I didn't realise how badly things were affecting me physically and mentally. So I'm going to echo what my coworker said; No one is going to have your back, only you can take care of you. And no job is worth sacrificing your mental or physical health for.

Now it's been a good 4 or so years since I worked at the place where this all started, and I still feel the affects. I still can't do things that I used to, I still find myself in pain. But I'm still not sold on the diagnosis.

You mentioned an abusive father, this is important. I've spent the past few years trying to take care of my mental health and deal with past trauma. I've come across some interesting research that there seems to be a correlation between adults who have lived through chronic abuse/trauma as children that then go on to suffer from chronic pain. A lot of abuse survivors tend to have inexplicable aches and pains, particularly around the neck/shoulder/back where we tend to carry our stress and tension. I also read that a lot of people who are diagnosed with Fibromyalgia had experienced an abusive or ongoing trauma in their childhood.

Now, I'm not a doctor or expert on any of this, at all. But as a person who is so tightly wound that I have to make a concious effort to unclench my muscles, it makes sense to me that they're going to be in pain after 20/30 years of tension. I couldn't honestly say one way or the other if the pains I get are a physical condition or if they're the result of my childhood.

Anyway, sorry, I think that went off on a tangent there.

And after making you read all that rabble, I really don't have a lot of advice to offer. All I can do is beg you to stop putting yourself through unnecessary pain, being in pain when you're trying to do ordinary tasks others take for granted is punishing enough. Show yourself some kindness and learn to accept you are going to need breaks, rest and time out. When I was working, I managed to change my roster to alternating days on/off so I could have a rest in between. Is this an option for you?

The hardest part of it all is accepting there are things you just can't do anymore because it's too painful. I don't know how to combat that, it's hard, it's depressing. But I have found new activities and hobbies, but I do miss the old ones.

I remember living with a hot water bottle and a bottle of deep heat close by, it helped manage the pain, but it doesn't take it away.

The comment you made about your abusive father stands out to me. Do you think this has had a physical affect on you at all? Do you feel tense? Do you grind your teeth? Maybe it sounds like nonsense, but in my case, I'd safely bet a lot of the physical pain I'm in now can be chalked up to past pain. Maybe I'm drawing that conclusion because it's easier to have someone to blame? Huh, hadn't thought of that before. Shit, that's not helpful.

Sorry, I'm going leave this now, sorry for all the rambling but I hope there was something helpful buried in my response. Even if all you take away from it is I've been there too, you're not alone.

All the best.

Hi @saltandpepper

Oh man! You have summed up a lot of truths that I resonate with in your post, I really, really appreciate the time you put into the post, it's definitely something I can identify with.

I too, have always been hesistant to whether the diagnosis was suitable for me, depsite seeing multiple specialists and all of them coming to the same conclusion, I feel like I've been tagged with a "too unspecific, probably "x" condition, throw it into the too hard basket". I'm not one to get too involved with a diagnosis as (for me, at least) it's just a tool to explain symptoms and explore treatment options.

I'm incredibly sorry to hear you had such a tough work experience, that sounds horrible. Your coworker there definetely told a hard truth, and I think that's something I needed to hear today.

I've done a lot of reading as well into correlations between abusive childhoods and chronic pain/fatigue later on in life (also something that came up in my genetics course a while ago!). I dont know if you've read "the body keeps the score"?, super interesting book exploring this theme. I've read as well that many people diagnosed with fibro have had some sort of long standing abusive that "fried" their nevous systems. It'll be interesting to see what future research discovers.

You're right about the clenched teeth and keeping necks and shoulders tense, it's something I try to be mindful during the day as it seems to be my body's default setting, which makes sense in regards to my upbringing. Interesting thought, about having someone else to blame. I think its helpful in the sense that it can help someone not blame themselves for it, so long as it doesn't become something that is lingered on for too long. 🙂

I appreciate your advice, all easier said than done, haha, like most things. But it's nice to hear it from someone outside of my current experience. Practice makes perfect I suppose. 🙂

I like your comment about finding new hobbies to replace old ones, I think that would help with how life changes with what you are capable of doing. You're right, it is tough and depressing. It's hard to be okay with it, but I don't think I/we always have a choice.

I want to thank you again for your reply, it's helped me feel less alone, pointed out some obvious truths I've been ignoring, offered some helpful advice and given me some food for thought. Have a good day/night 🙂

I'm really glad my respose was helpful @Isabelle and in turn reading your response has been comforting for me to read.

I have actually downloaded that book, it's on my to read list. I am currently working through another sort of self help book at the moment but I have to do this in small doses. As much as I want to power through and absorb as much info as I can to get some answers, it's hard work.

Yeah, the too hard basket feeling is what I got from it all too. And it really was where it ended up I think after a year of them scratching their heads. Feels like that's what the Fibromyalgia diagnosis is, to me at least, the diagnosis they use when they just can't figure it out. *shrugs*

I hope that there will be further studies and research into it all, it is really interesting and it has been very validating for me. It's given me answers when the doctors couldn't. Feels like it makes more sense that chronic pain is a result from being tightly wound all your life, rather than a random condition with no known cause, cure or any real information really.

I hope you're able to find ways to make some small changes that can help you get through each day. I found the hardest thing about this bloody chronic pain is that unless you're dealing with it, you don't get it. People really struggle to understand the pain you're in when they can't see it. That was really tough for me, so if you ever need some support, I'm here and I get it.

Hi @Isabelle I also have fibromyalgia but I always say it doesn't have me! I'm kind of old and been dealing with it for some time now and have been in a bad place with it but am in a good place with it now where I can say it's mostly managed. I think that's the best anyone can say ever... and it's different for everyone unfortunately. I have a great doctor who understands chronic pain conditions and has been really helpful since I found him and got under his care... prior to that I struggled and had almost lost hope for any sort of reasonable life.

My doctor has me on the right pain meds for me and has been encouraging in my goals to regain and maintain movement. That's really the key to managing the pain... no meds will remove all the pain but it can be reduced somewhat. Movement helps immensely but you need to find the Goldilocks zone... not too little... not too much... juuuust right! Of course there will always be the unexpected flares caused by changes in the weather... stress levels... poor dietary choices etc. but you can live a good life with fibromyalgia. Sugar and carbs are not your friend... I know... makes me sad too but I sometimes indulge anyway... it's just about making sure I eat really healthy 99% of the time. Red meat is going to be your enemy too. Look after your gut health... probiotics... if you can take baths... add magnesium but be careful as it makes things slippery. If you are not a bath person or can't do that... take magnesium tablets. Find an activity you enjoy to keep you motivated to move every day. If you don't enjoy it you'll find it hard to keep going. I do a bit of yoga stretching and vibration platform but mostly walking because I enjoy walking. Getting sufficient restful sleep is important as that's something that we struggle with and looking after our mental health.
The main thing is don't let fibromyalgia take charge of you... you can take charge and apart from the weather have a decent amount of control over your pain levels. It's like a superpower really... we can function at pain levels others would wimp out at!