One of the things I struggle with the most is having debilitating fibro decades before average onset (I’m in my late twenties). It makes me feel like I’m losing so much more of my life than even people with this condition are supposed to lose. Every time I tell someone I have fibromyalgia and they remark “But you’re so young!” it hurts.
Sometimes I find myself wishing I was old, so I wouldn’t have to deal with this for all these extra decades. I’m approaching the one year anniversary of my diagnosis, and it’s hard for me to picture living like this for even ten more years. I know that’s probably because I need more time to get used to living with fibro, but it’s still hard to imagine.
How do others cope with having fibro at a young age? Are there any older folks who have words of support or advice, too?
Not fibro, but autoimmune arthritis. I was diagnosed at 36 years old with two young kids. I probably developed it in my late teens but it didn’t hit me systemically for a stretch.
Even at 52 years old now, I still get lots of people telling me that I’m too young to have arthritis because it’s considered an older person condition. I would encourage you to have a few responses at the ready. It will help with your frustration a bit
My sister was diagnosed with fibromyalgia at around the same age as you are. She also suffers with mental health issues. She chose to go the route of applying for disability as well. She did receive disability, but I wonder sometimes if it’s actually been a good thing for her. It’s allowed her to identify herself as a disabled person and pretty much give up on ever working or even volunteering anywhere again. I would encourage you to look at disability as disability for now. In a few years as you get a better handle on what works for you and what doesn’t, you may find that you are able to return to working at least part-time.
I feel there is an advantage to being diagnosed early. I am sure I had it as a teenager but was finally diagnosed at 55. So many years of being told there was nothing wrong with me or blaming my symptoms on small things that would get resolved (ie. anemia, hypoglycaemia,…). It took a long time to find a doctor to take me seriously.
It takes time to find what works to calm or manage your symptoms but once you do that and learn to manage your “spoons “ life does get manageable. At this chapter in my life I choose to use most of my spoons watching our grandchildren 3 days a week. It doesn’t leave many spoons for anything else, but that is okay to me. You will find your balance.
I was diagnosed at age 30 and it sucks. There’s no way to slice it otherwise. I’m 58 now and I’m exhausted. You are going to have to work to find out what works for you, and you may never find that balance but what are the other options? (If anyone knows of other options, please pass them along) I’ve tried a few different medications and none of them worked for me- not really. The first thing I took was amitriptyline and I had no idea how it was supposed to work, I was just told it would help me sleep better. I took it for years until I was watching a tv show that someone overdosed on it! Then I tried to find out some better answers and eventually stopped taking it as it wasn’t doing anything for me although it did produce some serious side effects. Doctors are not very helpful but if you find one who listens to you, keep hold of them as long as you can. I spent years being dismissed and ignored by male doctors and some female. At 58 I still struggle every day, but I do my best to make the most of my life. I wish you all the luck in the world battling this horrible condition. Make sure you always advocate for yourself and stay away from the ableists- “you look fine.” So tired of hearing that!
No, of course you’re right, tom.girl, there’ll not be any easy help for a decade or two. Amitriptyline was similarly as bad for me as for you, but I then stopped it sooner, after 4 months. All other meds I had to stop even quicker. Also if they did help, they’d suppress symptoms, not heal, and they dull my brain so stop me from self-care, pacing, analyzing symptoms and triggers, like on my blog: I prefer pain with brain to no pain with no brain.
I manage tho to bring all my local pains down to zero and my restorative sleep up to 7-8h. It’s hard work getting there, and still work keeping it that way. But that and looking to keep happiness up to almost 100% - more than before all these conditions I have actually - it makes for a high quality of life. Despite at the moment only being able to move or talk for 5 to 30’ without pain increasing from 2 to 5-6, and a new set of symptoms coming up with each of the 3 jabs and then after the last every month.
It’s the mental attitude of radical acceptance using techniques of acceptance and commitment therapy / mindfulness / serenity prayer etc. which has allowed me to keep happiness & quality of life up this high.
Age? Yeah, I spose everything has its up- and its downsides. I find it harmful to compare with others or even with my former life, unless to find patterns of symptoms and triggers. I’ve had pain & stress all my life, GI, back and more, still was able to get fit in all regards by the time I was 50 than ever before, fibro crept up inside of 8 years and able to live with it, but not able to tone anything down, it, i.e. not caring better for myself smashed me down not able to do anything much for 10 months except full time trying to find out the many things I now know about myself. Then just about able to commute & work a little, each jab and covid and many other triggers smashed me down again and again, energy down to 10% every time. So knowing about the fibro coming up, the MCAS I probably always had etc. earlier and connecting with others that I need to self-care and pace much more might have helped. But again - might might might - I was self-caring as well as I could, I did everything right, and now I simply have to adapt once again and like you say tom.girl make the best of it, savouring any which way I can.
What others say? I think most things people say very understandable, and it helps me to realize that. No one understands this invisible sickness yet, we don’t, docs don’t, researchers don’t. So of course “But you’re so young!” and of course “you look fine”: this is part of the truth, and it’s up to us whether we let it get us down. With my general attitude I manage to say: Yeah, luckily I’m not as old as my stiff movements suggest, and I look fine. It’s bad enough as it is, I don’t want to be old or look bad with this. I’m glad I’m young and nimble enough in my head and partly body to get a fairly good handle on this, turning crap into gold as much as possible, and I’m glad that neither I nor people can’t see everything. “Bad”/good enough that my wife can see everything in my face and help me pace. At the moment I’m so bad that even I myself can see how blue-white my lips are. That helps pace, but doesn’t make it any better. In conversations what helps is a quick answer like “at least that” / “well, if nothing else”, or just “yeah” - and not getting annoyed, not for a minute.
Cos it’s the positive or negative mental attitude that makes all the difference to this and that’s a choice. If I could improve anything with a negative mental attitude, I’d go for it… But as it is, it doubles the trouble. Mind over matter.
Yes, yes! I cannot agree more about the attitude! I do my best to maintain a positive attitude as it can be my quick undoing otherwise. Thanks for sharing all that.
I’m also an empath so I sometimes feel like I’m soaking in other people’s misery without consciously choosing to, so I have a small circle of friends and when necessary, I go it alone.
Take care of you <3
I do more and more alone now, too, interacting has become so much of a strain or rather drain, emotionally but also simply physically. And that sort of has to do with empathy - it’s from positive excitement, positive stress (eustress Germans call it as opposed to stress). Because of blood pressure peaks despite usually normal blood pressure, I’m now keen to try to find out what triggers that. My circle of friends hasn’t become smaller, but my time with them has become very short quality time, at the moment only 5’, very occasionally when I’m better it can be 60’. But I make sure I have hardly anything to do with people’s “misery”. But I love talking about what we can do about any problems, if people want to improve. Venting can be fun for 2 minutes (altho I only need that about once a month myself), after that I either try to change it to a plan, like asking or suggesting. But if that isn’t wished for then obviously I’m not wished for, so go out of that situation. But it hardly happens any more, who’d want to complain with me near them! That’s another one I don’t have trouble with “Oh, yeah, I know what you mean, I had a pain the other day too” - again that’s well meant, perfectly understandable for people to try to relate, and I’m way above and beyond any competition with anyone…