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I feel I will be letting my mom down if I admit how disabling my fatigue and pain is. My family is very physically active. I do swimming and love doing charity work but I cant do as much as just months ago. I feel weak and my mother and father both blame it on diet, mental illness and being out of shape. I am 16, 115 pounds and 5'2". At times my legs go completely numb and I start to black out if standing or doing stairs too much. My friends are supportive but I cant get the help I need as I am… read more
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Members rallied around a 16-year-old struggling to get family to understand their undiagnosed chronic illness, with the overwhelming message... Read more
There is a site on facebook called Fed up with fibromyalgia that can be very informative. Stay strong. Keep going to doctors until you get an answer. Even if you have fibro I think there is something else going on. Some of your symptoms are a sign of another underlying illness. Dont be afraid to ask for help. Let your friend support you during this time. Learn to face your activity so you don't overdo it
@A MyFibroTeam Member they are not right! Reading this makes me want to wrap my arms around you and tell you how brave you are, how brave and mature you are way past your 16 years. I got sick when I was 25 (I’m 33 now) and I face the pain and battles you are articulating. I minimize my pain around my family to the point where they often forget/don’t understand what I am going through so when They do see me sick or down they think I’m being weak which makes me feel ashamed or like a burden to them.
But you are not!! I get that being 16 makes this more difficult but the best thing you can do is be your genuine true self all the time..make them see that you can’t do everything you once could or what they want you to do but that doesn’t mean you are broken, doesn’t mean you are less than..you can still do great things, just differently. Keep demanding to go to different doctors if you need to really understand what is going on. Rheumatologists, neurologists, ortho, psychiatrists..I am a psychologist so going to a psychiatrist is important but I know it can be scary for others.
Unfortunately, we are not at a point yet in society where asking for help does not bring judgement..I tried to get through my whole doctorate program without accommodations, in my delusional thinking I believed that I was proving a point to myself..but then when I needed help and finally asked for it during my last week I was dismissed from my program because I didn’t ask sooner! My own pride has potentially ruined me. You may be judged but reach out, you owe that to yourself.
Your family sounds like their in “denial” honey...
Keep going to doctors until you get your diagnosis...
in the meantime do exactly what you need to for yourself
and don’t push yourself beyond what you can do...
Have you given your parents printed information about your conditions?
I’m so sorry for what you’re going through 🤗
@A MyFibroTeam Member
I'm sorry that your family is so unsupportive. My dad has fibro too, so my mom had to learn about it with my dad before I was finally diagnosed earlier this year.
My mom has recommended a keto diet, which I may look into. There is a link to your diet and fibro, but I don't think your mom realizes this or means this when she mentions your diet.
Even my doctor has suggested simple, easy exercise as I can handle it and I have a prescription for water aerobics.
I also agree with other posters that there may be something else going on on top of the firbro. I have a slightly irregular heartbeat, and had the middle section of my intestines removed due to a flesh eating bacteria, and this was before my fibro reared its head.
I really wish I could make your family understand- whatever they say, please try not to take it to heart. I can only imagine how hard it is for you.But we are here for you and will give you all the support we can.
That they blame your condition on a mental illness is beyond infuriating- they can impact your day to day life, but it is not the be all end all. There is something else going on with you, and I dearly hope you find what it is. Sooner rather than later.
That is so not true. If only people could truly experience what we do even for just one day. A very bad flare up day with extra chronic fatigue, maybe than and only than will see how it feels. Trapped inside ur body and becoming slave to the never ending debilatating fatigue and pain. Somedays u can barely make it out of bed and just doing that alone on somedays makes it feel like u ran 50 miles and got ran over my a bus. They compared fibro to having the worst case of flu anyone has EVER had and have it for 6 month or more and thats how we feel almost daily. Smh. Ill informed people and their ridiculous comments infuriates me. If they can't physically see an illness than It must not be real. Ughh makes me angry
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