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Living With Fibromyalgia - Online Support Group

"You're just exaggerating." "It's not that bad, you'll live."

#1


Being a 23 year old, means that I get judged on my age a lot. Just because of my age alone, I get judged for not being active or being able to do things that other people my age can do. And since I have Fibromyalgia, a disease that is still going around as being "fake", I get told that I'm making up my illnesses. Even my mother hounds me a lot, saying that I'm not better because I'm not trying. She says that if I carry heavy things, it'll make me stronger… Even though if I lift something remotely heavy, my arms start to collapse. And let me mention that I cannot even open a water bottle, because of the lack of strength and the pain in my fingers.

I spend most of my days sleeping, unable to get out of bed, or do anything but sleep on and off. I try really hard to go out and do things, but I get extremely exhausted very quickly. Honestly, just walking around the grocery store is so painful and exhausting, that I usually nap afterwards. And I definitely cannot go to amusement parks or conventions without being in a wheelchair. Yet, I'm just "faking" being sick, from what everyone tells me. I have even had many doctors tell me that it is all in my head… But someone please tell me why I would fake being in this much pain? I couldn't fathom why anyone would want to spend their life in bed, unable to achieve their dreams, yet alone daily goals? It's just so cruel how people treat me because of my health. Even my "friends" think I use it as an excuse to cancel plans.

It's becoming to the point where I am getting so emotionally drained from my family pretending that I'm okay, that I'm just beginning to fall apart bit by bit. They think I can just wake up and be better. That if I go to the gym tomorrow, I'll magically feel fantastic... even though I can barely walk. I just don't know how to get it through to them that no, I'm not okay. And no, I'm not magically going to get better. This disease isn't just going to go away. And that no, it's not just me feeling this way.

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#2

I am so sorry for the lack of compassion and understanding you are experiencing . I might suggest if I may to find a doctor who specializes in illnesses with chronic pain. Usualy these doctors are neurologists and rheumatologists.Before you make your appointment ask if the doc has knowledge of and treats illnesses with chronic pain such as fibromyalgia for example. I don’t know that you already have a diagnosis . If you do or when you do you will have the confirmation that you are not faking anything. Get some credible articles and give them out to people who don’t believe or understand . I send you all the best and HUGGGGS

Suzie

#3

Chloe,

I'm so sorry that you have to go through this so young. It is so hard to deal with family expectations and disbelief. I know I had a hard time of it in my 40's, it must be even worse being so young.

See if you can find a doctor that specializes in auto-immune disorders. If you can, most of the ones around here, have family meetings to explain to your family what is going on. Having the doctor explain instead of you trying to might help them understand that you are not taking it and you aren't going to jump out of bed tomorrow all better.

I'm more disabled from my fibromyalgia and lupus than the loss of my foot, but people are more willing to except using a prosthetic as a handicap than debilitating pain.

#4

I will definitely look for a doctor like that, who is willing to have a family meeting with me to help explain it.

Do you know how I would go about finding a doctor like that? Should I maybe look up Fibromyalgia Specialists in my area? Because I know that there was one of those in North Carolina, but I just moved to Florida so I'm not sure about here.

I definitely agree that people are more willing to accept visible handicaps than non-visual. I actually deal with people hounding me a lot about my handicap pass. I've even had one lady run across a parking lot, yelling at me, making sure I knew what spot I was in.

Also thank you so much for your reply, it really means a lot.

#5

Thank you, Suzie! I was diagnosed with Fibromyalgia over seven years ago, from a Rheumatologist. He just didn't have any helpful suggestions for the pain, but I went to him long enough that I'm sure if I went to see him again, he would be willing to explain it better to my mother. I'm willing to try anything to get the stress of my family off me, that's for sure.

Hugs back!! <3



suzie said:

I am so sorry for the lack of compassion and understanding you are experiencing . I might suggest if I may to find a doctor who specializes in illnesses with chronic pain. Usualy these doctors are neurologists and rheumatologists.Before you make your appointment ask if the doc has knowledge of and treats illnesses with chronic pain such as fibromyalgia for example. I don't know that you already have a diagnosis . If you do or when you do you will have the confirmation that you are not faking anything. Get some credible articles and give them out to people who don't believe or understand . I send you all the best and HUGGGGS
Suzie
#6

Hi Chloe, I am sorry it is difficult with your family. There are several good articles in the Communicating with Friends and Family group you might find helpful. There are articles you can show to others that can be beneficial and help explain some of the things someone with chronic pain goes thru. I am glad you are looking for a doctor who can also meet with your family. Please keep us updated on how you are doing. Hugs.

#7

Hi Chloe,



I’m in my 20’s and have been dealing with FMS for over a decade. I have good days and bad days. Like you, I can’t even open a bottle of water on a bad day. I’ve learned my limits and rest when I need to, no matter what anyone thinks. I’ve also been yelled at when using handicap spots, despite having proper permits, because I look “normal”. My parents, to this day tell me that if I’m more active, I’ll get better. Doctors (not my regular doctors) often treat me like a drug seeker.



The other posters had some very good advice. It is very important to see a specialist. Ignore the people who don’t believe you or who say it’s in your head. You need to focus on taking care of YOU. As you get older, people won’t question the fact that you have an illness as much. It’s a sad reality of life. It’s real, NOT in your head. JUST TAKE CARE OF YOU. That’s all you can really do. Those of us with FMS have such a limited amount of energy. Don’t waste it on negative people or trying to explain your condition to someone who will never understand no matter what you say - even if that means occasionally tuning out family and friends.



Tia

#8


I will definitely keep you guys updated! Thank you so much (:

Auburnm said:

Hi Chloe, I am sorry it is difficult with your family. There are several good articles in the Communicating with Friends and Family group you might find helpful. There are articles you can show to others that can be beneficial and help explain some of the things someone with chronic pain goes thru. I am glad you are looking for a doctor who can also meet with your family. Please keep us updated on how you are doing. Hugs.

#9

chloe i am in my 20's and got fibro when i was 22.It's hard when people say "you are too young to have fibro" and stuff like that.Im sorry for what you are going through,i feel for you gentle hugs

#10


Thank you (: I definitely appreciate the support! It's really lovely knowing I'm not alone in this. #softhugs
Queenpink said:

chloe i am in my 20's and got fibro when i was 22.It's hard when people say "you are too young to have fibro" and stuff like that.Im sorry for what you are going through,i feel for you gentle hugs

#11

Chloe,

Although I am so sorry to hear that you are having such a rough time with your family, I am thrilled to see so much support and other young people here! I am 24 and have experienced a lot of the same things. I am constantly told I am too young to be experiencing these symptoms.We are the ones in pain and missing out on all of the fun young life experiences and being told that we are "faking it" or inconveniencing them just rubs it in. I used to be a size 7 healthy fun loving person who loved to exercise. Now walking around a store kills me and I have gained A LOT of weight unfortunately. Although I know that working out might help me in the long run, it is no way a magical cure. That is the other big thing I hear from family and Doctors. I am either faking it or everything has to do with me loosing weight. It could not possibly be that the pain and fatigue played a role in me gaining the weight. Like Tia said, we have such little energy most days, it is not worth it to waste it on people who will never understand. We are our own best advocates and can only do so much. Sometimes all I want to hear is that someone believes me. So to you I say, I BELIEVE YOU!

#12

Ah yes! I couldn't have said any of that better myself. That's all exactly how I feel, word for word. And I am just so glad to know that there's other people that feel the same way.

Clenway5 said:

Chloe,

Although I am so sorry to hear that you are having such a rough time with your family, I am thrilled to see so much support and other young people here! I am 24 and have experienced a lot of the same things. I am constantly told I am too young to be experiencing these symptoms.We are the ones in pain and missing out on all of the fun young life experiences and being told that we are "faking it" or inconveniencing them just rubs it in. I used to be a size 7 healthy fun loving person who loved to exercise. Now walking around a store kills me and I have gained A LOT of weight unfortunately. Although I know that working out might help me in the long run, it is no way a magical cure. That is the other big thing I hear from family and Doctors. I am either faking it or everything has to do with me loosing weight. It could not possibly be that the pain and fatigue played a role in me gaining the weight. Like Tia said, we have such little energy most days, it is not worth it to waste it on people who will never understand. We are our own best advocates and can only do so much. Sometimes all I want to hear is that someone believes me. So to you I say, I BELIEVE YOU!

#13

Chloe,

I didn't believe my mother's chronic pain conditions either, and she had fibromyalgia. I'm regretting it now.

#14

Oh, kiddo, I wish I.could take this illness away from you and all of the young people with it, if I could. It's such a game changer and the opposite of what healthy young people need - too much sleep, inactivity, indoor living, etc. etc. And the cruelist part is when the people who love you try and second guess your illness. I always tell them that I have one really good doctor and she is who I listen to for medical advice and matters. None of these people know a thing about fibro and even those who do sometimes can be obtuse too. One thing that might help a bit is to have them read the Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the...

If that doesn't work, show them this site and other peoples' postings. It's a real eye opener. If that doesn't work, try to bring them to the doctor with you so he or she can explain that it's real and very life changing. Most of us trust a doctor's words and it does help some people to go and talk to the doctor.

If that still doesn't work, try to tune them out when they talk about you and fibro. It's tough but it's for your own peace of mind.

Gentle hugs,

Petunia

#15

PS: I believe you!

#16

Chloe,

I’m 26. I was diagnosed when I was 24. I had days when my friends had to help me open a bottle, tie up my answer sheets, do my hair… For months my hand was so weak that I couldn’t write.

I can relate to everything in your post.

Within 3 years I visited nearly 25 doctors. I continued the treatment of the one that finally diagnosed FM. But he told me he has done everything he can and I better consult a psychologist when I was not getting well. My parents have been taking me to many psychologists and psychiatrists since then. Their theory is that the pain is real, but you can manage it by managing stress. But for my every flare-up, they say my attitude towards something I did that day or something I was supposed to do that day is the reason. They won’t believe anything I say. My parents like to believe this is psychological. Now that I finished my college and I’m home, the only people in my life are my parents and these psychologists and psychiatrists. And none of them believe a thing I say. I don’t tell them anything anymore.

#17

I have to add my 2 cents here because I get it…100%. I’m an old lady now (56) but I had this awful condition when I was 29, IMMEDIATELY after a total hysterectomy. I will always believe fibro is connected to hormone problems. Let me tell you how dramatically my life changed after all my lady bits were removed. I gained…wait for it…100 lbs in just under a year! I did. I used to be fairly attractive, but overnight I was twice the size I had been before. Along with the weight came the unexplained pain & because I was now post-menopausal, the docs had the perfect scapegoat to blame all my symptoms on. I was finally told to get psychological help, which I did, because I was desperate. No one still believes that I gained all that weight as a result of a hysterectomy, I can see it. There’s no question I needed the surgery, but it ruined the rest of my life. I became an old lady way, way before my time. But in one way, I welcome it. Now that I actually am an “older woman” or a “woman of a certain age” I’m allowed to have physical limitations without judgment. Feeling 60 at 30 is a very difficult thing to contend with. But having people who should be your support system doubt that you really feel what you really feel is worse. I’m sorry for anyone being judged unfairly simply because you were unfortunate enough to get sick! But hey, WE get it!

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#18

Hi Dotkom,

Thanks for your reply. I should say you are very brave. You have endured as many painful years as my age.

I have never met any other FM sufferer in my life. I have been almost confined to bed since my post graduation. i.e two years as of now. All my classmates are working, some of them following their craziest dreams, many married and became mothers. I sort of lost direction in life. I have no idea how I’m going to live, no matter how hard I try, whatever I try, I can’t find anything that helps me to pay my bills, let alone following my dreams.

If I happen to look back to the days before FM, it strikes me hard how different life has become, how much has pain become a constant companion and how painful it is even to smile. And it has only been three years. Three years, and not a single soul in my life understands what I’ going through. I didn’t have this experience before, but last night I was so scared, so scared of this life that I felt I’m going to break down.

And I saw your post this morning. When I see the accounts of elderly FM sufferers following the months of diagnosis it used to make me frightened. Because, doctors used to tell me this can be cured though it takes some time. Now when I see the posts of women past fifty, I see that this path I’m forced to take and I’m scared of is already taken by many.

And about hormones… One year before when I had appendectomy doctors said I had adhesions and my intestines and tubes and ovaries, all were stuck together. They said it was due to this I had appendicitis. Anyway my periods and other abdominal cramps have much reduced since I started taking pills.

Hugs🐣

#19

@Chloe1
I hate that you’re feeling this way because I know how sucky it can be. I’m 25, and am going through something similar. I’ve been trying to get diagnosed since I was about 16, and finally last month got it figured out but I feel like I’ve burnt out my support system since at this point i feel like everyone is sick of hearing me complain all the time. My boyfriend and his mom mean well by constantly telling me “if you move around you’ll feel better” or trying to force me to get out of the house etc, but sometimes it does more harm than good. All the friends I do have at this point don’t believe I’m sick because I’m “too young and just want attention.” I personally have taken solace in books like The Secret and essential oils for sanity. I know it’s really hard when you’re not feeling well to try and pick yourself up emotionally, so if you ever need an ear my inbox is open (if i don’t get back to you right away, i’m probably sleeping lol) and just know you aren’t alone.

soft hugs,
alanna