I have been dealing with fibromyalgia for around 12-13 years now, but lately I’ve been struggling a lot with how often I am having intense pain days. Especially with my back, sharp pains in arms upper and lower back, ibs has seems to have gotten worse, my migraines are back to being pretty much every day accompanied with dizziness and nausea. I get worn out by doing simple tasks, I’ve been experiencing tingling and numbing more often in my arms, legs, hands and feet. My fibro-fog has seem to have gotten worse and I’m just absolutely tired. I know that is a lot but I don’t get to speak on this often my family and friends really don’t understand. When it comes to my family they just expect me to have it together and be strong all the time. I have never been the best at expressing the things I am dealing with because of what the people in my life expects from me. Sometimes I wish I could be vulnerable but part of me feel they would not take me seriously or just tell me you’ll be alright, nothing is wrong with you. I have always been that person for everyone else to come too but I need that from someone right now because I am tired of being strong all of the time. I am working on being more vocal to express my feelings and what I am going through be this is really a challenge for me. Thanks for being an outlet
Hi Norma - sounds like your “family & friends”, their expectations and your expectations, are the problem and they need it shouted from the rooftops big time before you crash big time. It may all have been tolerable up to now, but isn’t any more. If you could “take a break” - perhaps lifelong - from these expectations and stop overdoing it, you could get some life back…
So the big question is what is making it so hard for you to be more vocal. If you knew anyone with this amount of pain, you would encourage them. If they all knew you had this amount of pain, they would - hopefully - encourage you. And if not, they need teaching.
Personally, I needed counselling of all types to learn and be mentored on how to talk generally and in each applicable situation, because I tended to fall back into old traps of meekness, submission, being unassertive.
This came from my shy personality and also wrongly-understood Christian belief. Cloud/Townend books helped me realize it’s not Christian at all to be submissive.
Thanks I am working on being more vocal about it but in the beginning I sent them articles about it. I feel the still don’t fully understand what I have to deal with or they just feel I can handle it based on some of the comments that have been made. Part of the reason its hard for me to be vocal is because when I’ve tired in the past they considered it complaining and that I need to be grateful because it could be worse. I’ve been called lazy told to take vitamins to help with my memory or if I needed to take off that I must be alergic to work. I have never felt that I am heard when speaking so I tend to shut down and stop just suffer in silience.
I get you. Such a pity that many people don’t see what we feel. Part of it of course is that we don’t see it ourselves and try not to feel it, in the hope that that’ll help, but that only goes so far, regularly makes crashes even worse.
Maybe they pics or a more exact description of how you are feeling can help your people more than articles?
Have you tried printing out or sending some of the pics & memes Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses or this “letter” An AMAZING letter to Loved Ones from a Fibromyalgia Patient by the fibro-author Claudia Marek?
I think I realize now that that’s a typo for “tried”.
Otherwise I’d have suggested the word “tired” might be belittling your severe fatigue and exhaustion?
Maybe this is the time to admit to yourself and shout at them, that now it is the “worse” that you may have once been able to be grateful for…
Is there anyone you know that can help you self-advocate or if necessary advocate for you?
Or what about one of them going to the docs with you, if you have a doc that can explain how serious your illness now is?
Insinuating you’re lazy or bitching that you’re “allergic to work” is more than thoughtless, it is contemptuous. Really those are people, whether they are family or pretend to be your friends, that need avoiding. They also need a kick where it hurts, so they know what pain is, but that’s for someone else to do.
It’s nice to talk to someone that understands, and yes that was a typo. I actually sent them some pictures to them from Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses a few mins ago hopefully that helps. I am going to start working on not being so hard on myself based on the expectations of others. I’ve always been the one that they feel things don’t/ shouldn’t bother me or that I’m strong I can handle. I have to start giving myself a break and not worry about how others feel about it
Easier said than done to not worry about what others think…!
Being strong may mean: Being proud of accepting & advocating our limits.
Keep us updated how you get on not worrying any more!
Hi Norma , I too send educational material to family members and often remind them that I had my diagnosis confirmed at Mayos clinic. That way I’m not arguing my case or my side just educating them . It’s too exhausting to explain why in order to take care of all the things they expect of me that I need SELF CARE 1st . If they could only see your back ache and migraine like they could see a cane or wheelchair would they still hold you to such high standards or ask if they could lighten your burden. Our disability is still a disability even if they don’t see it , so keep sending those memes , and when they try to dismiss you and tell to to take vitamins eat your veggies ect. Send them , to this web page so they can meet the rest of us , “ who are just like you “ . We’re never alone in our pain.
I’m not sure when my fibro started but think it may have beenover 20 years ago when I was told I had TMJD/arthritis in my neck. Since then other ‘problems’ have popped up, but until the last couple of years I could handle things-more or less. We have moved twice in the last year or so, which was not helpful, but seem more settled now. I thought a new doctor might have more helpful ideas-but no. I finally managed to get a scan across abdomen as my stomach/IBS been much worse, and an xray across my back which has been dreadful the last year. The results finally came back 4 weeks later-all normal. How can they be normal when there is so much pain? I haven’t even been able to get hold of my doctor yet, things are so slow here in the UK and they don’t seem to want to get back to work like before covid. I wish I could help, but have tried lots of different things with no joy. The latest I am trying (and hoping) are tablets from a local health store and a rub on gel-both with green mussel in, and came ‘reccomended’. Most of my friends have gone now and my family, mainly just my sister now has no idea of the pain no matter how I try and tell her. My husband tries but I don’t think even he realises the pain there is everywhere. Anyway, I do hope you get to feeling a bit better and the pain eases a bit.
Norma, Jse123 & Sue T,
I will have you all in my prayers. Being back on this site again reminds me that there are others feeling exactly like I do every day and dealing with the same issues. After a while, even if your family and friends accept that you are limited in what (& how much) you can do, they still have no understanding of how hard it really is for us, both physically and mentally to function in all areas of our life.
Thank you for the encouragement you continue to give each day, while facing your own pain, burdons and limitations. You are a star