Well, I finally went to the SS office and applied for disability. One of the workers there had to fill out my application because my hands and fingers were so so swollen and painful. I have been on FMLA since Feb 20 because I just can't seen to beat the pain. The mornings are hard but night time is so bad because I just can't sleep due to the pain all over my body. I am foggy, in pain, feel so alone and frustrated that I just don't understand why I'm still living. Most days I just want to die. I so don't look forward to anything anymore because I can't even walk long distances. I used to love to exercise and take long walks, now all that is in the past and I miss it so much. My job requires me to type every day, all day and I just can't do that anymore. I sure hope my application goes through.
Hi Rose,
I'm sorry that your life has taken such a strange turn. Fibro definitely is a game changer; we have to modify our lives in order to handle it.
Do you have a support system at home? If not, is there a local fibro group or chronic pain support group in your area? One way to find out is to check in a place called "Meetup." It tells of all sorts of local goings on. I would think you could do with some real, in-person communication. And some heartfelt hugs if you have friends or family around.
Here's another idea: if you can find a local pain or fibro group in your area, why not exchange numbers with a few nice members and call each other during those long, dreary nights. There might be some people on here who'd be open to it too; some folks are up all night, just like you.
Okay, from here on in, let me first say that I'm not a doctor and don't work in a medical field so can't give an informed medical opinion. But I'm happy to offer some suggestions as a fellow fibro sufferer.
Are you on any meds for the pain? Are you taking anything to help you sleep? Sounds like you are and are just hitting a brick wall. Have you discussed this with your doctor? They might be able to tweak a med or try you on something else. Also, have you been to a pain clinic? They might be able to give you some relief as well. I do find that it takes many, many, many doctor visits before you finally find something that works. You need to have patience. And also confidence in your doctors. If you feel they they just aren't helping you, you could always try a different one. Of course, you may have already, "been here and done it."
What about anti-depressants? I find that when my dose is right I can deal with the pain. When it's not, I start feeling like you do. And that's not a good place to be in. I'd strongly urge you to go back to your doctor and talk to him about your depression, because no one deserves to live like this, hon. You deserve to feel some peace each and every day, even though you're in pain. My therapist said that the emotions roiling around in us can add to the physical pain we feel. And it seems to be true, at least for me.
Sleep - Do you have any sleep issues, like sleep apnea or restless leg syndrome? They can really mess up your sleep, leaving you feeling totally out of sorts. Have you had a sleep study done? The reason I ask is because I have sleep apnea or some kind of disturbance and getting a CPAP machine helped me to feel much less sleepy during the day.
I also take Nortiptyline, along with Lyrica, in order to sleep at night. My gosh, I'd never be able to sleep without it! Has your doc had you on any sleep meds? Have you had any luck with them? I can only imagine how awful it must be to be up hour after hour after hour, unable to sleep from the pain. I think that this is the time that you need to concentrate on, since it seems to be causing you so much trouble. In fact, I'd like to suggest that you start a new thread and ask people what they do to divert themselves from the pain. It's a good way to find out ways to keep your mind off the pain as much as you possibly can.
As far as exercising goes, is there anything that you can still do without a lot of pain? If not, maybe you could keep your hand in the sports field by doing something that relates to it, like helping to find sponsors for walks for causes, as an example. Or writing a blog about sports. Or writing a blog about how to deal with sports while living with chronic pain.
Or else maybe you could concentrate on a different interest of yours that you can still do. The real trick to living with fibro is finding the things that you enjoy and can still participate in and do them, instead of thinking about the lost opportunities. For instance, I used to go to a wonderful amusement park as a child, and my happiest memories are of the place. Several years ago I finally went back to visit it briefly with my mother. I've wanted to return but my walking ability is pretty poor so instead I've been putting together a scrapbook of the place, as it looked in the 60s and 70s, through post cards. That way I can "visit" the place again and think about the fond memories there. I even have a few newer post cards so I can picture going through it today. I know it;s not the same as being there and visiting it but if this is as far as I can go, at least I can take a visual trip there.
Disability cases can take anywhere from 6 months to 2 years to get through, so you might want to consider that in regards to your current job. Can you get a job doing lighter clerical tasks? I know that typing can give you carpal tunnel syndrome plus the usual fibro stuff, so it's not easy when you're in pain.
Please try to hold on to your hope. You shouldn't have to feel like you want to die each day. Help is out there; it's just a slow process to get it, at times, especially since this illness is so hard to treat. But there are many of us on here who do cope, despite the pain. We're no better or stronger than you; we just refuse to let fibro win. No f'ing way should fibro win, pardon my language.
If you're still feeling so badly that you're suicidal, please please call someone who's dealt with other desperate people and knows how to hook you up with people who can help with those feelings. Here's the number for suicide prevention: 1-800-273-TALK. While we're good at helping you with fibro issues, they're the ones who best know how to handle thoughts of self-harm. I really hope that once you feel settled in here and get the chance to both talk and listen that you'll feel better about yourself and the fibro situation.
Gentle hugs and a lot of understanding of how tough it is,
Petunia