For as long as I can remember, my life has been a nightmare of constant, intense agony, debilitating fatigue, cognitive disorientation and an emotional distress.
Though it has haunted me for at least 30 years, it wasn’t until just the past year that I came to understand the malady that plagued me.
Mustering up the energy to do the simple daily tasks that most people take for granted is often beyond my reach. I often forget things. I get edgy and irritable. It has cost me many wonderful relationships, some jobs and countless opportunities. It has disrupted my life, drained my finances, destroyed my credit and has led me to the brink of suicide and beyond the brink of insanity.
Since I discovered the guaifenesin treatment I have been getting successively better each day. My energy is returning. My emotions are stabilizing. My mind is regaining its focus. I am slowly peicing my life back together. I have dreams like any other person, but all my dreams have essentially been put on hold while I fight to awaken from this nightmare.
Comments:
I feel your pain
Littearly. I had a horrible fibro day yesterday. I am greatful that it’s not an everyday thing w/me as it seems I’ve got a “lighter” case of it.
There is nothing for it, and if there is please tell me.
It can be progressive, so you might not always have a lighter case. Mine has gotten worse over the years.
I hate that yours is progressive
Mine acts up really bad with the weather. The cold, rainy weather leaves me next to useless. I tried a “pain spray.” I believe it was Dr. Frank’s. It said it could help fibro..well it didn’t help me and it tasted horrid to boot. My mom couldn’t even stand the smell of it. We were convinced that you don’t want to take that stuff so you dealt with it. LOL. It may work for some..just not me.
Hope we find something to at least ease our pain.
Yeah, the cold & rain make mine worse too. I’ve heard it might be the barometric pressure. Also, if I have a “good” day, I tend to overdo it trying to catch up on everything, & that just brings on more “bad” days.
Biofreeze pain relief spray and/or gel (it comes in both) works good. I get it from my sister, cuz she’s a physical therapist, & it doesn’t stink either. lol The medicine my dr. gives me helps too, but nothing cures it (that I know of anyway). I’m supposed to exercise, but that’s hard to do when you’re so tired & hurting so much! Heck, just walking across Walmart is a major ordeal some days! lol One of my friends just told me the other day that her sister tried a diet that is helping her, so I’m going to have to find out about that.
I think the fatigue is as bad or worse than the pain. I took a class called Mind Over Matters that has helped me deal with the pain. You can still make yourself do stuff when you’re hurting (even though it’s hard), but sometimes I can’t even get out of bed cuz I’m so exhausted. People don’t understand; they think I’m lazy. That’s so frustrating too….all the judgements people make cuz it’s not something they can see. Someone told me recently that I only do the bare minimum, then they proceeded to tell me everything I SHOULD be doing! ERRR I already KNOW what I should be doing! But what they think is the “bare minimum” actually takes great effort on my part. They should just be glad they don’t have to deal with it. They think they understand cuz they had some back & neck problems & know about pain, but they don’t know about all the rest of it. I can’t sleep at night without waking up every few minutes. I get bad IBS too (although I found drinking a lot of water seems to help that some).
I also found that going to a massage therapist helps with the pain. If you contact one of the massage schools, you can sometimes get them for free. Stretching exercises helps me too. I learned a good back stretch in yoga, and it has helped my back pain a lot. But I haven’t learned anything to help with the fatigue, except to rest when I feel tired & try not to overdo it.
I tried that new medicine lyrica that’s supposed to be good for fibromyalgia, but it knocked me on my butt. The dr. said I’d get used to it in a few days, but I have kids to take care of & couldn’t stick with it long enough. Some people can’t tolerate it though. Maybe it would work for you. My dr. said the way it works is that it makes you not feel things so much, so it helps the pain.
I’m going to try the guaifenesin. I’m open to just about anything that might work! :-)
I’ve had fibromyalgia for 8 years now, never heard of the term when it started and after countless & costly appointments, I did my own research on the internet, joined a network, bought books etc. etc. But NOOne and I mean Nobody in my life..understood what I was going through…I tried to explain but it was all too scientific and complicated…I couldn’t even explain all that well since I myself is lost with what’s happening to my body. After tests, painful and costly injections every week and so on and so forth..I became withdrawn. I stopped complaining..to my love ones, my boss & colleagues at work. All because it was useless to try to get them to see the invisible, excruciating amount of pain I was going through. Luckily, I got through final years of college, got a job and had series of evaluations of me being “irresponsible, lazy..”
Job after job. I gave up. What can I say, oh the meds for muscle relaxants, pain killers, antidepressants just suppressed my brain and I couldn’t wake up. Most days. Drove nearly 2 hours to work and couldn’t function. My shoulders sore and back numbs. Went to have trigger points injections plus infrared treatments and wham! back to work. I couldn’t sleep for 8 years now. A good, sound, quality sleep. I don’t know what that’s like. I need meds to taper me off to dreamland…and that makes me groggy and gives me mood swing.
My doctor said to measure on the scale of 1-10 the level of pain each day and my reply was that there were very few days on a scale of 2 (least pain) the worst pain topped 10 for sure. I sometimes watched people walk around and wonder what’s it like to move around or sit or sleep without pain…I can’t remember that.
My 7 years good relationship was over partly because of my anger to deal with all this. Who’d want to take care of a sickly, moody and incapable person..I thought. This isn’t the first time i wrote about this but its the first time I might share and not delete it.
The despair is I cope with this on a daily basis and now I know so many others as well. I might not be rid of it but I have hopes for a piece of normal life. To work and deliver my best, to find love and have a family. To not be a burden. To stop asking why me.
I will though, someway, somehow…maybe not the way I expect..but let’s see..
Thanks for reading my story. My heart & support goes out to everyone who goes through similar experience!!
I understand your pain and frustration.I to have lost a great deal of my life because of this hidious disorder.Im 52yrs old and i’m just comming out of my worst attack of fibro,It has taken seven weeks out of my life because of sleeping, pain and depression , i don’t remember much of it because of the fibro fog.I live on my own and my family don’t seem to want to help or understand.I was very physically fit and an active person before getting sick, I guess its hard for them to accept me as the person i have become because it has changed my life forever.But i contiue to maintain a happy life to the best of my ability.
Greetings
Thank you for your comment. I am now into my 9th year of my battle with fibromyalgia. It did get somewhat better but that’s on certain days. There’re days when I’m more tired and aching than others. For me, my entire body feels like a violin that’s been strung up and tightened time and time again. I’m sorry for what happened with you. I wish you have someone or a family who understand and takes care of you. I’m only 32 years old but it means I have a long way to go with this problem. My family thinks I’m lazy, in fact I’m not. I stopped complaining about the pain and just live with it. It makes me a very edgy person, at times I don’t like myself. You sound like you keep a positive mind and that is a good thing. My heart goes out to you and I hope that you will be healed and travel to Western part of Australia like you had hoped for.
Best Wishes,
:)
steveszat has gotten 6 cheers on this entry.
schlafzipfel cheered this 3 years ago
SpammySammy cheered this 4 years ago
Anythingispossible cheered this 5 years ago
musie cheered this 5 years ago
Violableu cheered this 6 years ago
Dynagirl cheered this 6 years ago
