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Riss2015

New member
Joined
Jan 22, 2017
Messages
1
Reason
DX FIBRO
Diagnosis
01/2017
Country
US
State
Minnesota
I was just recently diagnosed with Fibromyalgia, although I have been experiencing the pain for about 5 years. I am about to turn twenty, and I spent the majority of my high school experience in constant pain and feeling like I was crazy. It was so difficult to be so young and struggle to do simple things, like going up the stairs. Coupled with constant doctor visits where I would be presented with one negative test after the other, I thought I was crazy and that I would feel the pain and exhaustion forever. Now I am relieved to finally have an understanding that what I experience is real and to have a name to call it, but I am really intimidated. I am scared to tell anyone, because whenever I struggle to do something I always get looked up and down and then when they see how young I am I am instantly labeled an attention seeker. I am very independent, and I feel terrified to start to ask for small accomodations, even if it would greatly improve my day to day life. I think part of it is my pride, and part of it is that I have no idea how to explain my constant exhaustion and how much it really does hurt. I tried to explain it to my boyfriend, and when I try to ask for help for things like carrying the laundry up the stairs he always tells me how he is sore from work too and he manages. He knows I have fibromyalgia, but in his mind I am simply sore, he doesnt understand how bad it hurts and how difficult small things can be. He told his mom about it, and she told me that because she is sore sometimes she must have it too. It is really overwhelming, and I feel very lonely as I try to figure out how to manage this. How do I go about changing my lifestyle without seeming like I am just seeking attention? I never mention feeling sore unless it is just horrible, and even then I do everything by myself, but right now I am really desperate for a helping hand, even if it is something small like carrying the laundry. Some days the only thing that gets me out of bed is caring for my dog and work. Does anyone have any tips about how I can express how I feel without seeming like I am throwing a pity party? I really just hope to find someone who understands how I feel.
 

sunkacola

Moderator
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Joined
Dec 2, 2016
Messages
1,992
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Hi Riss,
I for one understand very well how you feel. I am also a very independent person and it would horrify me if anyone ever thought I was trying to get attention or feeling sorry for myself. I also at times feel desperate for a helping hand. However, I am alone. I do not have family. I have relatives but the geographically closest one is over a thousand miles away, which is a good thing, and there's virtually no communication with any of them. I have many nice acquaintances but no good friends. I live with animals instead of another person. In my life, if I do not go to work and pay the bills no one will and we will be without utilities. If I don't take care of the land and the animals they will die. I have no possibility of having any help and in a way that is better because I just have to do it no matter how bad I feel on any given day. I never talk to anyone about it. I never ask anyone for help. In my life experience, asking for help never got me anywhere in any case. I think it is better just to carry on the best that you can on your own.

In your case obviously asking for help is not getting the response you desire, so I would say stop asking. Just do what you can and don't do what you can't. If you cannot carry the laundry all at once, carry it in small batches. If you can't do that, then just don't do it. Don't say anything, just don't do it. If someone asks you why, tell them it's because you couldn't do it. This is not self pity; it is simply a fact. If you don't ask for help and simply state things unemotionally and stick to just the facts, they may eventually see that you are not exaggerating and they may even help you. Or not. Nothing you can do or not do will change who they are or what they do. But my best advice for you is just stop asking for help. If you approach things this way, at least you have kept your dignity. And that is very important.
I wish you the best of luck and you have my support.
 

Lou38

Senior member
Joined
Dec 29, 2016
Messages
232
Reason
DX FIBRO
Diagnosis
02/2017
Country
UK
State
Scotland
Hi Riss

I completely understand where you're coming from. I am very independent and hate asking anyone for help, it makes me feel weak admitting I need help & I know that's stupid but it's just how I am. I don't think anyone can possibly understand what chronic pain and/or fatigue feels like unless they've ever experienced it. Every day I have really bad pain in my knees and hands that never goes away but on top of that, I always seem to get a new pain somewhere else in my body. It's horrible feeling like this every single day, I wish I could offer some advice but I can only say that you're not alone in what feels like a very lonely place some days. This forum has definitely been a good help to me, there's always someone to offer some really good advice or just understanding for what you're going through.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
Oh my this all sounds to familiar. One thing ice noticed is independence runs in fibromyalgia patience. Making me wounder if that personikty trate may have something to do with our illness.
Fibromyalgia is usually not just "sore" it is actual pain. Some days better then others and some flares are worse then others. Last winter I couldn't even get myself from the bed to the bathroom. If not for my husband and son me and my dogs would have starved to death. And no, I'm not exaggerating. I had no choice but to ask for help and sometimes demand it. I hope no one ever enters a flair like that with no help to rely on.

Let your boyfriends mom think she had FMS and maybe she will research it then realize the difference.
You are young so I assume so is your boyfriend and youth is often a little nieave, you will have to educate him a little. Everyone gets sore from a hard days work but we know the difference, non sufferes do not.
There is a great blog called the spoon theory I will paste the link below but it is a great way to explain your ability (or lack of).
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
 

Heavenjumper

Active member
Joined
Sep 26, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
08/2016
Country
US
State
AL
I too understand everything you have said and the way you feel. I have always had difficulty admitting I can't do something or asking for help with a task. I was diagnosed in August and I'm 34, always been independent, active, and self-sufficient. It is a harsh feeling to be in such pain doing tasks that shouldn't even take a second thought. I usually walk with a cane and have pain in various parts of my body at any given moment, some much worse than others. As much as my fiancé cares and tries to understand, sometimes he just can't. Educating people around you is the only thing any of us can do to get a little more comprehension of our daily battles from those who want to understand and help us. I wish sometimes that people around us could walk in our shoes for even just one day to have a small understanding of what we go through every day. My fiancé's mom has mentioned(after my diagnosis and sudden worsening of symptoms) that she has fibro, but I question whether she has actually been diagnosed with it or just thinks she has it because she has chronic pain in one hip. She never mentions the fatigue, the whole body occurrence of pain, or the foggy mind that comes with our fate. I can't imagine what I would do if my fiancé told me he's sore too if I asked for help with a chore. I have a lot of Irish blood and the temper that comes with it, so he probably wouldn't hear the end of it for days or I'd tell him to get out. This forum has been a great help to me for support and venting as well as answers to any questions. My best advice, harsh though it may seem, is if your boyfriend is not willing to understand what you're dealing with, then it may be best to end the pain the relationship causes you. I hate to sound like that, but he needs to be willing to understand your pain and help you since that is what a relationship is supposed to be about. I wish you luck in finding a good solution, no matter what path you choose to take.
 

brsoucy

New member
Joined
Feb 8, 2017
Messages
9
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
MD
Same here, I am pretty young and have Fibro and don't have anyone who understands. It is tough some days and very lonely. Esp when I should be in my prime and I get out of bed walking to the bathroom looking like I am 100 years old, bent over. Instead of telling people you are sore, tell them you have real pain. Soreness and pain are different. Soreness eventually goes away and is manageable. Pain is not. Also, if you go to your Fibro doctor again, maybe take your boyfriend with you so the doctor can tell him what Fibro is all about, he would believe the doctor. If he doesn't then.....hhmmmm.
I also agree with HeavenJumper. You could have this Fibro for many years to come and if your boyfriend doesn't support you right now, then he probably won't in 10 years. Your partner should help you in everything this world throws at you and vise versa for him. My husband doesn't support me as much for my Fibro but at least he does help me with anything I ask him to (laundry, carrying things, taking care of baby) because he knows I need the help. I sent him lots of online website links that give a good description of Fibro and what it is/does. I suggest you do the same so that your boyfriend can read for himself rather then you trying to describe it to him.
Try not to feel so alone, there are many of us out here that are experiencing the same thing and are here to help each other.
 

Wisconsinrocks

New member
Joined
Feb 6, 2017
Messages
7
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
Wisconsin
I have read the replies that people have posted and I too was always a go-getter and was very independent. I was first diagnosed with fibro when I was in my early 30's. Back then most dr's would pat your hand and send you on your way (luckily I found a dr that really listened to me). My fibro at that time was mild and so I just carried on. However my fibro went into overdrive after an accident 5yrs ago. Now my fibro is one of the worst cases my dr has seen (he specializes in fibro). I have it all. Serious fog, really bad pain etc. I have purchased all kinds of items to make my life easier. Jar openers, electric scrubbers for the bathroom and a scooter for when we go out (my fibro has limited how far I can walk). It took me a long time for me to admit I needed help with everyday life. My husband tried for a long time to get me to understand I needed help. I guess what I am trying to say is don't be afraid to get things that will make your life easier. If your boyfriend is not willing to help you and is not trying to understand what is wrong and that this is a life changing disease well....... My husband has been nothing but understanding and even though he works full time and I am home on disability he still helps out and understands if the house isn't fully vacuumed or dusted or etc he is ok. He tells me to stay within my limits and realizes that I have good and bad days.
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
I agree, do what you can, leave the rest alone, and dont exspect understanding from those who dont (want) to understand. Hang in there you will get through this. Stay positive, do things for yourself.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Understanding not sympathy is the thing most of us want the most and not to be made to feel any more of a burden than we already feel.

My partner has had spells of understanding and then other times minimized my condition with various comments... quite frankly it has caused major problems as i couldnt have tried any harder and also had fibro at the more severe end of the scale but pushed through and did an awful lot.....as much for him as for me. Normal people jump out of bed with a free pass to do whatever they desire..we are dealing with pain and still trying to be part of the world as best we can.

Men in particular seem to have a hard time even hearing what we explain..they act like they are listening but really they dont seem to digest things or remember next day or next week the seriousness of our condition.

Asking for help is hard..much harder if we are made to feel guilty when we already carry guilt and a feeling of responsibility for being sick in the first place even though logic says its not our fault.

I send hugs to all of you guys battling your way through this disease and hope you get the support from partners and familys you deserve.
 

MariaC

New member
Joined
Feb 23, 2017
Messages
5
Reason
DX FIBRO
Diagnosis
06/2009
Country
CA
State
Quebec
Hi Riss, just joined the forum myself and I have to say it feels good to know that other people know what I'm feeling. As for your boyfriend I don't want to excuse him but it can't be easy!? I've been living with fibro for almost 8 years now. I lost my hearing in one ear over supper one night a couple of years before that and was diagnosed with hypothyroidism shortly after that. That's a lot to take in for my family. I have a husband and two young adult daughters and I have to say it's taken them a while to understand. I had them read up on it cause I found it difficult to explain. They seem to have an idea but until you live it you can't know:-( Don't give up on him just yet. If he hasn't already done so, ask him kindly to read up so he can get an impartial perspective on this disease. Like the others have suggested, do what you can, when you can and be happy with that. Stressing over the little things will just worsen the pain. I feel for you...being so young!! I eventually learned to live with it but I still have moments of denial myself. Take it day by day and make the good things a priority. If you don't have enough energy for the mundane, it can wait for another day!
 
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