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 don't have fibro (at least that I know of!) but I get it. I've joined a local support group for people with fibromyalgia and invisible illnesses and have found that some of the things we deal with are similar.
It's nice being around others who understand that you just can't do things at times and need to rest!
Avocado makes a good point, local or online support groups are a great way to connect with others going through similar things. I just recently signed up for a chronic illness group at my school and am excited to attend my first meeting after winter break!
I need to get into one if those any good info is always useful needed
@Elle22
That is so amazing! I really hope it went well ♥
Hi hun I am in your same position... but I've also gotten more than 10 diagnoses... the beginning of lupus possibly... fibromyalgia, degenerative disc disease after my daughter was born I was 22 they found a major tumor in my spine so I have major nerve damage on my left side of my body... I under went an 11hr back surgery was paralyzed for two months then a year later another surgery due to my litter back collapsing, bulging discs, I suffer from pain everyday.. no-one I feel my age understand at all I moved to Wisconsin from Reno when my daughter was born and have completely lost my social life. I would love to chat with you and possibly share our experiences and relief options if you want. Thank you for your time my email is email addressif you want to get ahold of me quicker. Thanks hun! Good luck stay strong and think positive as possible... no one understands that even showing is hard for someone as young as us... it's hard but still need to find things that keep us feeling good positive
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I am only 25 my legs go out and I put my bottom teeth thru my bottom lip at 3am on my birthday... 5 stitches on my 25th jeeze I'm an old woman at 25
I know exactly how you feel. I was diagnosed wit Dysautonomia recently. I don't look as bad as I feel. Just because We don't have anything physical to show We are in pain doesn't mean It's not there. I would love to talk about this with you (: I've been looking for someone Who understands
@ToTheMoon345
I couldn't agree more. I also think that if someone doesn't understand the pain they can't see, if they were to ask more questions, we would be happy to answer. But people really do need to meet us both ways! ♥
I really hope you find lots of people who understand, we need all the support we can get! ♥
Here are some resources that may help you connect with others:
☆ Tips on finding more people who understand
☆ Support Site that offers great articles and resources
Thanks for posting these resources. I was diagnosed with fibromyalgia and chronic fatigue syndrome in 2009, and initially my husband was the only person that I could count on to at least attempt to understand what I was going through, and because it was new to us both, he was amazing at lie letting me vent. He learned to ask what he could do to help, and did a ton of research in an attempt to make sure I didn't feel alone. I am very lucky.
My friends and family wee a different story, however. His family (my in-laws) have been great at attempting to understand and be there for me, if I ever need them. My family, with the exception of my aunt (my dad's sister) is the only exception. She has a lot of health problems, and it's made her more compassionate and protective of me. Without them, I don't know how I would have gotten through the initial shock, let alone been able to find the strength to get treatment and make it.
My friends were the hardest ones to "convince". I actually lost a few friends because they refused to even give me the benefit of the doubt, and thought I was just being a flaky, bad friend because I couldn't keep up with my old socialization schedule. However, it showed me who my true friends are, and I'm grateful that I still have them.
It's hard finding people who understand, hell it's hard to find doctors that understand, but they are out there. Also, this forum is a place where people understand, and although I have not figured out how to deal with everything associated with the chronic fatigue and fibro, I do have a lot of experience with what doesn't, and some stuff that does... I'd be happy to share my experience and the multiple trial and error (and the more trial and success) if anyone wants to reach out to me.
I was diagnosed with fibro when i was about 18. I know its really hard If you ever want to talk check out my profile and leave me a message okay? <3
I'm 17 and feeling the same thing. I try and go about my day as normally as I can which leads people to believe there's nothing wrong with me. They cannot see that I am in agonizing pain with little motivation to continue living. Their dismissal of things that hugely affect my life finally caused me enough pain that I just gave up caring. The people in my life that are important to me have accepted my conditions and do their best to help and understand. Those who don't I have given up on because I cannot waste my life feeling bad about what they think of me.
~Hijabi:
I was sick for seven years before I was, finally, diagnosed with Fibromyalgia and Chronic Fatigue/Systemic Exertion Intolerance Disease. It started when I was 19 and now I'm 27 and disabled from these conditions.
I know how you are feeling. I know the emotional pain you feel because people don't believe you because "You don't look sick." I know the physical pain that makes you want to be sick every morning and never move again. I know the cognitive confusion you feel when you can't manage a simple math problem because it feels like your brain is operating in a really thick and foggy swamp. I know what it feels like to be young and feel like you never had a chance. You aren't alone, Hijabi.
~CourageLeadsToNewLife
First Discussion on Chronic Pain And Illness
To Be Held on Wednesday, April 15th, at 11pm EST In the Pop up Guided Discussion room!.
Now this is just the first, we want to see how many people are interested. Depending on the turnout this will just be the first in a series of discussionsand it may become a regular thing, also we may switch up times. Thank you. If you have question or comments please pst them inthis thread
Much love,
Listener andSpoonie,Jaelin and @HiddenGrace
I am one of the few males that get this illness, its been 18 yrs now, i think excepting it is difficult , it took me years , and many years to not push myself and even today i will do things that i know will put me into bed.The weakness and pain are always there, but need to think positive through all the pain as being negative just causes more stress and pain, a vicious circle this illness is...
@rick31797
Being postive can definitely help, but boy is it hard! ♥
^^Here is a little bit of mine to help you ♥
i know how you all feel! It's taken 5 doctors to figure out I have fibromyalgia, small and large nerve fiber neuropathy, hyperthyroid, pcos, and a tumor on my pituatry gland. I understand what all of you are going through! I've only been really bad like wheelchair bad last two years, and I hate being told I can't do it so I do and pay the price later! I hate having something no one else can see apart from the fact that I look exhausted you can't tell I'm sick. I have all the thoughts I have that maybe If I cut my limbs off some of the pain might go away.
@peacefulWaves54
It really is just so horrible having no one being able to see you are sick ♥ It can totally invalidate all of the things you are experiencing and know to be true!
(I found this funny post on how to reply to when someone says, " but you don't look sick!" you can find it here - my favourite response is: oh good….. because not sick is just the look I was going for!)
I hope you are doing as well as possible ♥