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.
@HijabiMilaMoo I have Fibromyalgia and Chronic Fatigue Syndrome. I get it. I get you. This is all so hard - but we're tough cookies! We can do it!
@Cheval2886 Hey. If you need listensr you can text me. I would love to help.😊
Hi, I have fibromyalgia, Chronic Fatigue Syndrome, Tardive Dyskinesia, Migraines, anxiety and panic attacks, Borderline Personality Disorder, Mitral Valve Prolapse, Gilbert's Disease, Asthma, depression, Bipolar Disorder, Hypothyroidism, Anemia, and probably some other stuff that I forgot. I've tried almost everything that Medicare will pay for, but it's hard coordinating with all of my specialists and medications.
I've been officaly diagnosed with Fibromyalgia. The worst of the pain has been managed with meds. I still hurt though. The fatigue is what I swear is gunna end me. I hate being tired all the time no matter how much I sleep or nap. I talked to a doctor and for some reason my sleep is "non-restorative"
@Rahl98 my husband has fibromyalgia and it's been really hard on him, and both of us. He wants not more then to get better and get back to work. He sometimes wishes they would find something else wrong with him, like cancer, because at least people respect that and it's treatable.
I don't know what advice I can give, other than to go easy on yourself and enjoy the little things in life that you are able to.
@Rahl98 I agree, it's very hard dealing with constant fatigue.(I have it too). Does your doctor have any recomendations about treating non-restorative sleep?
@HijabiMilaMoo Wow, that resonates with me a lot. I've had fibro (among other things) since I was ~14 and I'm turning 18 in a couple weeks. It is strange to think that I'll probably live my entire adult life in pain. I'm especially stressed for university when I'll lose the support group of friends I've spent so much time building up. I don't know how I'll manage a social life since a lot of the time I can't move- I've been off school for over a week so that's stressful too.
Still, there are moments where it's okay. I'm relying a lot on hobbies I can do without moving, like writing, and talking a lot over the phone. Like others have suggested, perhaps there are specific fibro online groups, since it's fairly common (or at least commonly diagnosed) among invisible illnesses.
I'm hoping to get some CBD once I turn 18, so you could always try that if you haven't already.
Good luck x