My name is Kitty, I'm 19 years old and I have Fibromyalgia. Fibromyalgia is a disorder in the part of the brain that sends pain signals out to the body when you get hurt. In people with FM, the brain is constantly sending out pain signals all over the body. It's not just a dull ache either, a lot of the time it feels like all of your limbs are being broken over and over again. Let me try and describe what it's like to have Fibromyalgia:
Fibromyalgia is when your mom comes into your room to shut your windows so the neighbors won't hear you screaming.
Fibromyalgia is slowly losing the ability to do all the things you love and feeling like there's nothing else.
Fibromyalgia is realizing you were wrong about not being able to do anything when you stop being able to leave your bed for most of the day.
Fibromyalgia is losing all your friends because nobody can be bothered to keep in contact with the girl they used to hang out with once a week because it's too inconvenient for them to call, text, or drop by once in a while.
Fibromyalgia is feeling like a burden when you hear your parents talking about how they hope they'll have enough money for the doctor visit and all the medication each month.
Fibromyalgia is always having to hear people tell you that you need to "just try harder, work through the pain, you can't get better if you don't try to exercise," because they assume that if you're sick it must be because you aren't trying hard enough to get better.
Fibromyalgia is feeling thankful that the pain was only horrible instead of excruciating today.
There's a lot more to it than that, but I think you're starting to get at least a faint view of the picture. So, here's my problem. I don't have health insurance. I live in a family of five living off of one person's income. I have to see the doctor once a month, I'm prescribed about five different medications, and my mom (who also has chronic pain from her cancer surgery) has a couple medications as well. We can't afford all of this so I've been doing without two of my medications for a couple months. One of them is a sleeping pill, but I can take over the counter for that. The other is a muscle relaxer, and it's been really hard to go without it. It would be really great if someone could help me out by pointing me in the direction of a charity that could help me, or something like that.
There is one other thing I need help with. My social life has been greatly effected(affected?) by this illness. I used to go out everyday and just do whatever I felt like. I would stay away from home for days just to hang out with friends. I hung out with at least someone everyday. I was so independent. Now I'm lucky if I get to leave the house once a month for something other than the doctor. I used to know a lot of people, but now I only have a few friends. I just want my social life back. Right now I need a cane to walk short distances, so it would be really helpful to get a wheelchair. My family can barely afford food and medication, so getting a wheelchair is impossible. If anyone can help find a charity that gives away wheelchairs, or someone who doesn't need one anymore (a small one, not being able to eat has made me pretty tiny) that would be amazing.
I feel so helpless, and everything seems impossible, but it seems like nerdfighters can do almost anything. If anyone can help me out in any way at all, that would be incredible. Thank you and DFTBA.
Kitty, I understand what you are going through. It is tough, especially when you don't always have the support you need.
There are many support groups you can go to, just to connect and so you don't feel so alone in your problems.
There are many financial solutions; and although some may hurt pride or ego, your health and well being is the most important. You can apply for medical assistance and/or financial assistance (depending on where you live) and it will help cover medical bills/medication/ect.
Please contact me privately if you would like to talk or need help finding assistant programs.
you are never alone!! DFTBA
I was recently diagnosed with fibro as well. Though honestly I should have been years ago but the doctors I saw just brushed my pain and discomfort away and told me to "take some ibuprofen once in a while because it isn't serious". I also don't have insurance and quite frankly it's a giant pain in the butt. I go to college in a small town and I haven't been able to find a support group or anyone else who even knows what this is. Anyway, I just want you to know that you aren't alone and I hope very very much that things get better for you.
I went through the same thing when I was trying to get a diagnosis. One doctor seemed like he was incredibly annoyed with me for trying to get help and told me that I was just slouching too much, he was rolling his eyes and everything. When I lost my health insurance and went to the clinic one doctor wouldn't let me talk and explain what was wrong. He just prescribed me something that was like ibuprofen as soon as he heard "back pain" and walked out. We saw him for 3 minutes. When I finally got diagnosed the doctor that was seeing me told me that he and a few other doctors take care of all the chronic pain patients in the area because everyone else refuses to treat them because "it's too hard". Thanks for the comment, it's nice to know that I'm not alone.
Oh yeah, it's vitally important that you can get my doctors. Make sure you get referred to doctors by doctors you already know are competent.
There's not much I can do to help here except say two things:
I think this will be covered in 2014 as part of Obamacare if the cheapest insurance option exceeds 8% of annual income or if you're below 400% of the poverty line or something (and of course you will not be charged more or denied coverage because this is a preexisting condition). You can read more about it here. Your income depends upon how much you'd be subsidized, but health insurance could cost no more than $992 a year (and if you're below that income level then you'd be on medicaid unless you are in Idaho, South Dakota, Maine, Texas, Oklahoma, Alabama, Mississippi, Louisiana, Georgia, or South Carolina, in which case you won't be in medicaid if you're below 133% of the poverty line and don't meet the other conditions necessary for eligibility, because those states have legislative bodies that are full of assholes.
The second thing is that it's "affected", since you were wondering.
I've suffered from very severe back pain, but I don't know what I'd do if that were constant. I wish I could assist more than telling you that things might be okay if people don't play politics with your wellbeing, but unfortunately I have neither the knowledge nor the means to assist you more directly. So, you know, hopefully things will be okay :|
Thanks, I appreciate it. I was denied low income healthcare, but I'm not quite sure why. Hopefully I'll be able to get Obamacare in 2014.
If your household makes more than about $16,000 and less than about $64,000 a year then you definitely be eligible for at least some level of government assistance. But people are linking charities here and that's going to be of more immediate help than Obamacare, so I'd definitely check those out. There are some charities also that can find you healthcare and then help pay for at least some of it depending on how much you can afford but I don't know if you're eligible or what those charities are. If anybody does know of something acting like that I encourage you to post it here.
Here are some links to foundations that give free wheelchairs to those that need them. Feel free to add me if you need to chit chat. DFTBA!
I was diagnosed with fibromyalgia five years ago. I've since been able to find a modus operandi for living with it and being able to satisfactorily work, love and play (within limits), but it was and is far from easy. Also, I've tried numerous diets, therapies, treatments and supplements; I've been on the merry-go-round, so to speak, and I thought maybe my experience could be of some help.
For me a lot of the disease turned out to be psychologically influenced, and doing psychological work has been the biggest key for me in reclaiming my life. I won't go into that here though, because I know that a) everybody with fibromyalgia is different (since all they've been able to do is slap a sticker with the Latin for 'pain in the muscles' on us, you and me might be suffering from two different, equally undiscovered illnesses!), and b) the last thing you need is another person telling you it's all in your head. If you want to know more about that anyway, feel free to message me.
For now, just a practical tip: I've found that Magnesium Citrate works extremely well for me in term of muscle relaxation. I use a supplement from the brand NOW which contains 200mg of pure magnesium citrate per pill. Some patients benefit from doses of up to 800-1000mg per day, but unfortunately I have a rather low tolerance and can take up to 400-600mg. Even with that dosage I notice a significant effect. Worth a try! You can buy this stuff pretty cheaply online, but make sure you get the pure magnesium citrate from a good brand; I've tried other brands and other magnesium complexes, but they didn't work as well. NOW is a pretty good brand overall.
Do you use melatonin for sleeping? That also works really well for me. It's over the counter and you can safely up your daily dose up to 3 mg. But perhaps you already know this.
Good luck, I know it's tough, and it sucks to be young and bedridden. I still work from my bed half the time, but I'm a copywriter so nobody notices:). Keep your head up and you can always contact me about this!
PS. I'm ordering all this stuff online from Holland, so you might have to google around a bit for the US equivalents.
Thank you for the tips. I actually have muscle relaxers and I take over the counter sleeping pills, so I think I'm good in that area. The whole "psychological influence" might have a little bit to do with it since I also suffer from PTSD. I don't take anything for that and I can't afford therapy, but I am going to try and get free counselling from my local Women's Resource Center, so we'll see if that helps reduce any physical pain as well as mental. Thank you for the advice and sympathy. I wish you the best in your recovery as well. <3
Hey, first off, I'm so sorry to hear about this. I have chronic lung resistance asthma, so I only know a fraction of what you're going through.
There are some steps that can help you find a doctor and get your medications:
1. Go on disability. This'll get you the healthcare you need.
2. Get health insurance. One of the good parts of Obamacare is that people like you and me with chronic and costly illnesses can be insured no matter what.
3. As far as the wheelchair things go, get in touch with local hospitals, charities, and churches. Many charities would love to help you find a used wheelchair through another charity. Also, join support groups. They could help you find what you need as well.
Best of luck to you! I hope you get some meds and feel better!
Thank you for your input. I'm sorry to hear that you have a chronic illness too. My mom has actually asked about me getting disability, but she was told that since I've never had a job (because I got sick before I ever got the opportunity to work) I can't get disability because disability checks come out of your taxes or something like that, I don't know. I am working on applying for government aid like medical and food stamps, so hopefully that works out. Thank you, and best of luck to you too. <3