Fibromyalgia and Invisible Illnesses
I've had fibro since I was 19, now 24, but never truly felt it's wrath quite like the last year, almost wheelchair bound, it's been hard for other 20 something's to relate because I don't look sick. It gets depressing waking up everyday and being in the kind of pain only someone with chronic pain can understand, that burning feeling you know with shoot once you start moving, but you know it will only help if you move and stretch but you literally have tears in your eyes from the pain just trying to do the simple task of getting up. Finding people who aren't my grandmothers age that understand that is near impossible so most of the time I suffer in silence, not wanting to be the annoying sick kid, the problem child. I just hope I can be that person someone can relate too and I can relate with them and we can bitch about things no one will understand with healthy privilege. Come chat with me, it's lonely being sick all the time.
I am only 28 and also have fibromyalgia, I was diagnosed just under 2 years ago and the doctors claim I have had it since I was at least 15, most likely much earlier. I can relate to struggling and becoming wheelchair bound, I find its also very difficult to find the balance, because I try to compensate for my bad days on my good days, which ends up making me worse. But being a single parent I haven't had much choice with that. I hope you have found a way to manage your morning stiffness better
I understand completely! I just turned 24 and I have no support from my family or friends. They all just tell me that I look fine, that I just need to try to get better, to ignore it or that I'm being dramatic. It's gotten to the point where I don't tell them how I actually feel anymore. I'm sorry you have to deal with this. It's no fun when everyone around you has all this energy and you struggle just to do daily activities.
@Tallulahblue
It is so hard when people treat you like you are overreacting. (I actually think that people who are ill mainly UNDERreact, because they are so used to being in pain, or being exhausted) I absolutely can relate, and I know how difficult it can be to not have the support of those you love most ♥
I am really glad you have found 7 Cups, hopefully we can help to support you in the way you deserve ♥
Hi everyone :)
I have been diagnosed with M.E./CFS (that's generally what we call it in England though I am aware it has many variations on the name) and told I probably have fibro too but it wasn't worth diagnosing me formally. I had a 'flu-like virus and never recovered, that was 13 years ago.
It has fluctuated over the years but I have been deteriorating steadily over the last year or two and am now housebound and very often bedbound too. I try to stay cheerful but it's hard and this illness is so isolating and lonely. I also have bipolar disorder as well so that doesn't help one bit!
At the start especially, it is very hard to realise exactly how much you need to reduce your activity by and what counts as activity. People seem to think I'm mad when I tell them that I have to limit how much I watch TV or listen to music etc because those activities are tiring and use up my precious energy. Pacing is very important to managing the condition in my experience.
I could go on and on...if I wasn't so tired :P
I wish that people would understand how debilitating this illness can be, how 'staying in bed all day and not having to work' is not fun, actually...but, I try my hardest to make the best of things even if I don't always succeed.
Hope you are all as well as possible :)
@Kaninchen
ME and Fibro are hard enough without Bipolar Disorder on top! That is quite a load you are carrying ♥
I just want to let you know that I appreciate how hard you work to get through each day, and am super proud of you for trying to look at it in the best light possible, it is certainly difficult (sometimes seemingly impossible)
Pacing is so important, but just so hard for others to understand! I am not sure if you have heard of it, I can imagine you have if you have been ill for 13 years, but this is one of my greatest resources to help explain to people who are wanting to support you but struggling to understand. ♥
@amazingrea Thank you so much for your lovely reply 
I use the spoon theory to help explain to people too. I have been told by at least one friend that it has helped them to understand better so definitely a good resource to have!
@Kaninchen
You're so welcome, it really was my pleasure. ♥
And I am so glad you have found it useful, it truly is a great resource! ♥
I am a newly diagnosed fibromyalgia sufferer. Pacing myself has been my hardest skill to learn. It's been only a couple months since my diagnosis and I am trying very hard to change my actions and behaviors that make my pain worse. But it's not easy. Finding a balance between action and rest can be very frustrating!! For years I've been called lazy and worthless, I was told I'm a hypochondriac and that I used my illness to get out of leaving my house. But the truth is I was either too tired or in too much pain to do anything. Both my parents and my daughter have had a diagnosis of fibromyalgia for decades and I always wondered if that's what is wrong with me too. But after watching what they went through I was in denial for a long time. Accepting my fibromyalgia has taken years to accept. My family has stopped treating me like it's all in my head now. @Kaninchen
hello all... I've had fibro for over 12yrs now and it took a long time to diagnose as well. It is indeed beyond frustrating that people...actually not just ppl but friends and family as well do not understand or in my case try to. "You look fine you kinda walk fine... I mean I know you're depressed but that is probably what's getting to you.." All bS does anyone here have the kind of good day, so u do as much as u can, stuff it all into one day? Then pay for it tenfold?! Try explaining that to others. A Neverending Struggle. God Bless u all my lovelies......🍉😎
Paying for it tenfold. Yupsidoodles. Been there, done that! Probably not the best of ideas, but it can really feel like it at the time! (and sometimes after, shh, don't tell anyone I said that, kay? xD)
Chronic illness (especially invisible chronic illnesses) are difficult enough, without having people AND medical professionals misdiagnosing and misunderstanding you. It definitely can lead to us feeling really alone, but now we have this thread and such a wonderful community full of support!
I am Rea, and I'm a listener with several chronic illnesses, I am going to be populating this thread with stuff, and hopefully helping some of you lovely people get more support ❤
I just want to tell you guys some stuff:
That's it from me for today, but I hope you are all not too bad and taking good care of yourselves ❤❤
hi all! i definitely empathize with you. i have four pins in my back from an accident, and suffered nerve damage. nerve pain is so hard to deal with. and do people recognize the amazing feat of managing to get through the day without crying? nope. they don't understand that feat because they can't see it.
my mother became sick when i was in 4th grade and after many, many doctors she was eventually diagnosed with both M.E. and fibro. i took care of her until i went to college, so i know how hard it is to live with these illnesses, how invisible they are, and even how people and doctors try to erase them -- telling folks who are really, really, really physically sick that it's all in their heads. it's a crime.
but i support folks with these invisible illnesses. i know it's hard to stay strong when your mind is clouded with brain fog, emotional lability, and pain. but we -- our souls, our higher self, our inner life -- are all stronger than the pain.
@falconer42
Thank you so much for showing support! You are definitely experienced in this area, which is a shame, but you're using it for great things, which is very admirable. ♥
Nerve pain is one of the most difficult things, especially when there is no visible cause. Sometimes it can feel you are crazy for being in pain, or worse, making it up. Getting through the day without crying is absolutely an amazing feat - go you! ♥
@amazingrea thanks! it's been difficult supporting my mother through her struggles, especially since i have struggles of my own. but she's now on a medication that worked miracles for her. she's able to function much better on her own now, (not that she doesn't crash still) so i don't feel so guilty for moving out. it's definitely been hard to support her when i have my own issues. she's also bi-polar (which i think someone else on this thread has this trifecta as well), which sometimes makes supporting her hard. but i try, which is more than many relatives of those with ME/CFS.
for everyone out there with this, keep on going. there will be medical breakthroughs, and hopefully those will be available soon. i know it's hard, but we can get through it by supporting each other!
@falconer42
I'm so glad your mother has found medication that helps her! It can take a long time, but is so amazing when it happens ♥
And that you've been able to move out and have your own life again, it's awesome! ♥
@HijabiMilaMoo
Thank you so so much for making this thread! ♥
It is still active over a year later, which is really great, and it has definitely helped a lot of people. I hope you are doing as well as possible, you rock! ♥
I've had fibro for over 30 years now.. I've been on a certain med for decades for it now I'm trying to get off it and its very hard. The pain is awful. I am trying to clean up my system with all these toxic meds.. I know in my younger years the pain was worse. I had a lot more responsabilities then being a single mom. I am going to start meditating.
@Suzy64
30 years of pain, is just unimaginable. I'm so sorry you've had to put up with all of that. ♥
It's really admirable that you want to try to get off the meds, I hope you can manage it. I'm rooting for you! Meditation sounds great, have you considered mindfulness? ♥
Hello dear spoonie friend!
(If that's what you refer too...I do as a chronically ill person.)
I too have Fibromyalgia since I was 17 and I'm currently 25. I know what it's like to be the sick friend/gf. It's tough when no one gets it. I literally have days where I break down and cry because of the pain. Not only that but I have POTS and hypothyroidism and a gluten intolerance. So, I go about my day much differently than most twenty-somethings. It's annoying to know I can't go out and dance at a club or sit for a long time at a movie. But it's my life. And I'm thankful for some of it because it's given me a different perspective on life that most people our age don't have. And to be honest take things for granted less now that I have these things. It does get better over time. But finding friends/people that understand is a big help! I'm always here to talk to if you need too!
@HijabiMilaMoo Sweetie I moved your post. :-) I hope you don't mind, more coming soon.