The most frustrating part of Fibromyalgia is just when I think I have experienced everything it has to throw at me, not even close. This makes it extremely difficult as you never know to expect or how to cope with it when you are experiencing new symptoms. Fibromyalgia is so much more than extreme pain and fatigue. And no one would know that unless they have been through it. I honestly cannot believe how much of your body is affected by this condition. Not only from head to toe, but inside and out, and every bodily system. It is amazing to me how versatile it is, and how everyone experiences it differently. Almost always when I am experiencing something I haven't before I automatically chalk it up to bring Fibromyalgia related. It sometimes makes you feel crazy, second guess and question yourself. Like is this even real, or am I just a hypochondriac? It does not surprise me one bit to see people asking, do you get, has this ever happened to you. Like I said, it is so much more than just hurting and feeling tired. After being diagnosed for over two years I still experience new symptoms. You just can never know what to expect and everyday is different. At least in my case everyday is different, sometimes symptoms will come and go hourly. It really is no wonder people with Fibromyalgia are chronically depressed. I know with my personal experience the pain aspect of it has always been a larger issue than the fatigue. It does come and go in stages, and there are a lot of factors, but pain has always been in the forefront. It is also disheartening that so many other conditions can be attributed to Fibromyalgia. It is so extremely complex it is no wonder there isn't a cure for it. I am extremely pessimistic they will ever find a cure for it because of the rainbow of different things it affects. What is the most frustrating part of Fibromyalgia for you?
The most comprehensive list of Fibromyalgia symptoms I have seen thus far is http://www.fibromyalgia-symptoms.org. It really breaks down a lot so next time you are wondering if what you are experiencing is normal, (Well not normal, but you know) that would be a good place to find your answer.
Hi Cherish,
I would sum it up in one word "inability". The limitations are the most difficult thing for me to accept, worse than the pain, of course I am also dealing with autoimmune, and the worse that is, the worse the fibro is.
Nearly every profile or posting I have read, tells me we were all dynamic people, who managed incredible feats at one time. Adjusting is a slow process, a difficult one, that you can somewhat adjust to.
Focusing on what you still can do, is the key, to dealing with it, I believe.
It is still important to keep a running list of symptoms, for your Dr to best care for you, let them know everything. If you do not have that kind of Dr, you may want to consider scouting for another.
Hugs,
SK
Here is some of the best info I have found
http://health.nytimes.com/health/guides/disease/fibromyalgia/print.html
The inconsistancies and unpredictability from day to day. I haven't had a flare up since I was 1st diagonsed in 1986. But this past week and tody I have been experiencing the most intense flare up that I've ever had since the day I woke up and couldn't move or get out of bed. For me the pain is the most difficult issue to deal with because it's not located in one specific place but runs through my entire body! My therapist gave me an article from the Mayo Clinic Staff titled Fibromyalgia pain: Options for coping: http//www.mayoclinic.com/health/fibromyalgia-pain/AR00055. It's really pretty good but one of the things it talks about is that things that work to help the pain one may not be helpful at another time which is what I am going through. The most important thing for me is to accept the fact at this point that I have a disease that has no cure and try to stay positive and reach out to people for help not try to hide it because it's so easy to do because it's an invisible disability. I just joined this support group Saturday night but I've already gotten a lot of support and even though the pain exist I know that I am not alone and that there are people who suffer from the same disease and know exactly what I am talking about! This gives me solace which replaces my feelings of despair and hopelesness. So thank you for sharing what it's like to have fibromyalgia for you. Cinnamin
I have grown to detest wintertime... The cold and wet weather makes it so much worse. I also dread menstruation because my Fibromyalgia alwaus flares during that time. Also when I am trying to fight off a cold. That is like the worst ever, because I already feel like I am sick all the time, then having a cold on top of that. It is like feeling you have been run over by a web Nascar race. The inability part of it was something that hit me hard in the beginning. When I realized I wouldn't be able to do a lot of physical things, it was a hard realization, now I have just come to accept it. I have come to lose faith in all medical professionals... I have heard that statement so many times, that if I am not receiving treatment I need seek another professional. I have seen several now, and it is always the same. They don't want to help, in my case they have done more damage than help. They don't know what it is like first hand, and until they do they will always remain unsympathetic to people with chronic pain, that is my reality.
The fatigue is the worst. You do everything right, use food for fuel, get rest, exercise, and STILL can't have a day without feeling like you need a nap midday. No amount of caffeine or vitamins can keep me from yawning my face off!
The fatigue comes and goes with me, it isn't as debilitating as the pain, but it is pretty awful when it does happen. I had one of those days today, I stayed in bed all day pretty much, woke up with a migraine. That is true though... I had a doctor swear to me if I got vitamin B12 shots I wouldn't be as tired anymore, yeah right...
I miss me too... This has most definitely changed me into someone I don't know. I hate having to tell people all the time, do you really think I want to be this way? Like it is something I choose. Right, like any sane or insane person for that matter would choose to be this way!
The most frustrating thing for me is the depression. I really try to hide it because I have never been one to complain, but boy I am almost daily depressed and it stinks... I so hide it from my family but sometimes they know. The next thing is those who don;t understand. Ok I may look ok but I feel like I have been hit by a train. This stinks. I really can't do anything though. Cherish I pray you feel better and I wish you a Merry Christmas... God Bless you, xoxo Robin
i havent been diagnoised yet-but i agree. my cousin got it 20 years and now shes in remission for 10 years with no meds. im 63 so i probably wont be that lucky,but im trying to keep a good attitude. off to mayo in 2 weeks.
Hey Cherish today is not a good day to say the least! My body is consumed by pain things that use to work aren't working now! It's pretty scarey to watch my ADL diminishing everyday. Hopefully the Cymbalta will kick in and the higher dose that I start tomorrow will illeviate most of the pain. Luckily I have a good therapist because I have reached the end of my rope!
Cherish,
I love what you've written and think you should print it out and present it to every doctor you have. In fact, maybe I'll do it as well. You've managed to eloquently state exactly what it is that frustrates all of us, the elusive yet all encompassing nature of fibro.
This is truly a gem of a posting. Thank you.
You're Welcome, Petunia Girl:)
The pain is what does it to me. The pain. The fibro fog has improved since I got my CPAP machine but the pain is still a...bear. (You know that when I add those dots that I'm really thinking of a different word to follow the dots.) I hate how I have had pain in the same spot for 6 years now. It's exhausting to not get relief in that spot.
If someone could suck up all of the pain, like a reverse pain vacuum, I think I'd be good. Or maybe that's just denial? Could be. I thought that once I got the procedure done on my back that I'd be good, but I'm not.
Pain pain, go away, send your arse to the Milky Way.
Riley, I hope you don't have fibro. Cross your fingers that you don't. But I'm guessing that you've been suffering for a while, and you think you might. But IF you do, I hope you have your cousin's luck! I'd love to have a doctor study her genetics to find out how she's managed to stay on remission for so long.
Robin, have you been placed on anti-depressants? If not, they do help with the depression. If yes, then maybe you need to talk to your doctor about upping your dose. I'm no doctor but there's no reason to have to suffer with depression on top of everything else that fibro brings.
Cherish, you have stated it so well, it does make me feel crazy sometimes !! And question if its even real. Sometimes I feel like I’m in a bad dream and will wake up someday. It is so reassuring to know we are not alone, and when I read a discussion like yours I know for sure I’m not alone!!
Thankyou for sharing ! You have said what a lot of us think, prob what most of us think !
Hugs & blessings
Dee...
Oh, how I wish this was a bad dream... I always think that. When am I just going to wake up? Because it is like a living nightmare. I think that is another thing that frustrates me. People who think we fake it. I am sorry, but who in the hell would ever fake having such an awful life. like I said, paying today for living yesterday. I really can't stand the way we are treated. If we were cancer patients, we would be treated so much differently, and why? Because cancer can be proved by a test? It is bullshit... When are things going to get better for us?
I’d have to say the fibro fog is the worst because it’s consistently there. Half the time I don’t want to open my mouth around new people. I never know if what I want to say is going to come out right or if it will just be jibberish. Then when I do make sence and start to have a conversation or tell a story, out of nowhere I loose my train of thought. My most often used phrase is um ya I don’t know where I was going with that, and laugh it off. Mean time in my head I’m thinking I look like an idiot.
I’d have to say sleep is what I miss the most, as far as my pain and fatigue I’m lucky I usually only get one or the other. I’m either in emence pain, or a worn out zombie who can sit down if I plan on getting back up in the near future. What bothers me most of all is how we have all these symtoms and we are treated like hypocondracts, junkies, or lazy whinners.
my question is-how did we all get this-ive read its sometimes after a surgery or car accident or a stress point in life. iknow mine was after a normal surgery that i was terrified about.63 and never had surgery before. i think people who are worriers are more prone to this.off to mayo in a week'hopefully get an answer.i have heard mixed reviews about mayo-but my hubby from minn ad he said its the best. ill let you know how it goes.