Author: Cat (Contributor at theMighty.com)
Having a chronic illness such as Fibromyalgia Disease really does take its toll on you, especially when you have a ton of other stuff along with it like me. It waxes and wanes but it never goes away, at least it doesn’t for me. Right now I must say it’s as bad as it has ever been before. My Fibromyalgia Disease pain level has driven me so far down that even my positive outlook is suffering. I am so sick of being sick with Fibromyalgia Disease. My only escape is the sleep I get but now the Fibromyalgia Disease pain is twisting my dreams and I can’t even escape it there now. I awake so sore that it makes me want to scream out just to move. I’m as tired when I wake up as I was when I went to bed. Relief seems to be escaping me these days.
Get more exercise, that’s what they say. They have no idea how hard that is to do when every movement makes you want to flinch with Fibromyalgia Disease pain. When walking any distance at all makes your spine feel as though it’s just going to crumble apart and disintegrate. I do what I can, I walk short distances, I do leg lifts in my chair, but it’s hard. I wish others could understand how hard. Lose weight. I try, I really do. Without being able to be as active as you need to be it’s a very hard thing to do. I know my weight, which was put on after falling ill, makes it worse. It makes my self-image worse too which doesn’t help things at all. I wish I could lose it and I’m trying hard to, but it’s a slow process feeling as I do.
Take your meds. I do, I promise I do, just as they tell me to do, but it isn’t helping enough. I have missed them and I was lucky not to spend the day curled up in a ball on the floor, so I know they help, but they aren’t doing enough. There has to be something out there that will help give me my life back. Depression? Sure, I struggle with depression. When there isn’t a part of your body that doesn’t hurt all of the time, you might be depressed too. I think those of us who function with this are a lot stronger than people give us credit for.
I can’t even eat without experiencing symptoms. I eat something, it sends me running to the bathroom. There isn’t an aspect of living that Fibromyalgia Disease or the slew of co-existing conditions do not touch. You name it, there is an ill effect to go along with it. The symptoms feed off each other, each one causing the others to be worse. I try to stay positive. I know this will pass and I will feel better, but even then I won’t feel good. I have my good spells but even then there is still the ever-present Fibromyalgia Disease pain, depression, stomach issues etc. Still, there are better times when I can do more and enjoy more, but what do I do in the meantime? I’m getting worn down, physically, mentally and emotionally. I’m losing hope that there are good days ahead and that relief can be found. I mustn’t let myself get like that, I must always believe there is hope, but right now that’s hard. I must hold onto the thought that this too shall pass. I just hope it passes quickly.
I agree with everything you say. It sounds exactly like you are describing my life! However I wake up feeling much worse than when I finally got to sleep. I have dealt with this over 20 years, and there are some days that I fight tears. My best friend has cancer, and when she says “what’s wrong” I hate to even mention my pain. I only have a muscle relaxer, which doesn’t even begin to help. I hate that now it is impossible to get pain pills, because at least there was some relief. My self esteem is completely gone, as well as my positive attitude. It’s difficult to discuss this condition because of the comments, example, I was told I could get rid of it just by taking vitamins! I have withdrawn from that friend. Also , “you just need to get out more and you’ll be better”—-as if that would cure it. Anyway I appreciate your column and thanks for letting me vent
Why can’t someone find some relif for us!!!?? I let a doctor talk me out of pain pills that were working to put me on something better for me. Guess what the new meds don’t work the doctor moved and my 1st dr won’t put me back on the meds that did help! Wish they had to live like we do.
Thank you for sharing, sounds like my life as well. I have to rest after taking a shower. When people say get more exercise, I just want to slap them. but I don’t because a. I know it will hurt me far worse and b. I can’t spend a lot of time in the sun because I have vitiligo and my eyes are sensitive to it as well. So people who don’t have it stop telling us how to fix something they don’t believe in. But of course you also have your snake oil healers with their curales and take advantage of people. There are days I just pray for death, because I can’t have my old life back, and I’m so tired of being in pain. Thanks ladies for my ranting. I don’t don’t usually do this. But I don’t have it in me right now to be positive.
What you wrote sounds just like my life. I was unstoppable before I started getting pain so bad I could not function. No one understands except for you guys who suffer the same. I have stopped going to the dr other than to get a couple of meds that help sometimes. I have stopped trying to explain to anyone that the pain moves around and I never know how functional I will be from one hour to the next couple of hours. I fight the battle to hope for better. When I can do anything “normal” I feel so grateful. But the pain is for sure the worst thing thing to deal with. There are a hundred other symptoms but too long to list. Thank you guys for writing so that I know I am not alone.
What you are all saying is so true to for me and my life. I was diagnosed with fibromyalgia long before it was an acceptable diagnosis. Most doctors rejected the whole idea that it accurately existed. It was diagnosed by a pain management doctor who ruled out many possibilities before he diagnosed it. He was so attuned to the symptoms I really believe he too suffered from it.
He has been deceased over twenty years. I really wish he could see the wide spread support for the diagnosis. Unfortunately I have seen little if any progress in the treatment of it.
The only progress I’v seem is a broader acceptance of the condition. It helps in that not all doctors refuse to hear about it or think that I’ crazy, Depressed, or worse yet ; just plan lazy.
I pray daily for some break through in the treatment of fibromyalgia,
It takes such a tole not only myself but also my family as I miss out on so much . And they either go on without me or stay home too because I can’t keep up.
I am tired of being tired. My family, my few real friends are tired, too. I feel it progressing and feel angry that there is so little scientific evidence to broaden awareness. The doubters are even in the medicinal field which is horribly humiliating. Help us! Please support research! #FibroWarrior
Living like this makes me crazy. I feel very close to all you guys. No one else even has a clue what it is like living with fibro. I have had it for 13 years. Now I only go to a Dr once a year to renew meds. My Dr is annoyed and rude. She acts like I should just shake it off. WHAT? I miss my old life. It has taken years to accept this is my new reality. I have found some relief in taking some vitamins that I was deficient in. I also have lost all my friends. They do not understand that I have no idea how I will feel when I wake up. I have gotten my meds down to a thyroid med, anti-depressant, and something to sleep. For me it really helped when I got off tramidal and gabipentan. I had really bad withdrawal but I felt like it was giving me rebound pain situation. I also went on a gluten free diet and taking acidophilis. But you know how it is I still will get a really bad episode and end up in bed for 5 days. Hate it. Want to send love to everyone who is dealing with this. We are strong. Hang in there.