So it’s been a little over 6 months since my diagnose, and just coming up to terms with it. It is very difficult to explain, as I think I’m OK with it, but find myself still looking for answers. I am a very rational person by nature, all my life 2+2 has equal 4…then fibro came into the picture and the equations don’t seem to add up anymore. I don’t know if I’m even making sense, but it has just been very difficult to “accept” something that I can feel, but everyone else can’t. Having to explain myself over and over gets tiring, and I can’t handle pitty.
My dear husband has been as supportive as he can be. Yet sometimes questions the condition as all tests, labs, etc come back OK. You name it I’ve had it…blood work, MRIs, sonograms, therapies, and the list goes on. Yet the fatigue is there, the muscular pain is there, the forgetfulness is there, the trigger points are there…again fibro is very present, but only I can “see it”!!
At this point the tingling/numbness sensation in my feet and hands, the brain fog and shoulder/neck/headache pains are the worst. I know I have fibro, I am OK with it, I guess is just the “not being able to figure it out” that is driving me nuts!! Any tips, any recommendations? I have 2 young boys, that need from their mother and a husband that also needs my financial support, so not working is not an option at this point!! Help, tips…anyone?!? Thank you all in advance!!
My tip: "Relax... nothing is under control." I know that seems like a contradiction. But life sometimes doesn't make sense, and trying to make it add up may be adding a kind of stressful energy that can make you flare and make your pain worse. Try our Mindfulness group -- just click on "Groups" to find it. It may help you stop the mind monkeys that are busily trying to unravel the Fibro puzzle.
You and me both, only been diagnosed recently too. Like you, I have had all the tests -all come up negative. Talking on here does help, and the advice from dancermom is great. We can't understand this at the moment, but I do try to find out as much as I can about it as I can. Different solutions for everyone as well. It might help your family to understand if you find some articles for them to read. Look on this site and you will find some. Sorry I can't be of more help. Let us know how you are getting on.
I am setting here in the rain wondering many of the same
Things. Wish I new how to send a picture of the ice on the trees and a couple
Deer sneaking by. My arms feel like falling off so before I drive back just wanted
To encourage you. Probably same or similar tests. It seems we are a rare breed apart with
Our pain. Yet,
Here everyone offers an understanding of the issues. I have been so frustrated.
Until I found this web site I thought wow I have to be just nuts… But here I realized we arent alone.
I have read so many cases where it seems our symptoms can
Go into remission. Some times for a while. Or change into some more manageable
State. I hope that does not sound to lame. My worst part of my day is trying to sleep
And gettting moving in the morning. Seems when I am moving doing even a little something
Lets me know I havent given up. I must keep working. Most days I just focus a little at a time
My wife has some new understanding from reading some of
The stuff on here. Together everyone offers a little and that can help alot. I am learning to
Slow down where I can and pace myself as best when I cant. Hang in there.
I can relate to what you are saying. I understand the need to continue working as well because I am in the same boat. My husband and my household requires both of our income to survive. Plus, all the medical expenses for prescriptions, copayments and medical insurance alone is a primary reason for work. I have learned, through counseling, living day to day and knowing what helps me, that I need to take care of myself *bottom line*. I still push myself when I shouldn't sometimes, but that is all part of accepting this diagnosis and moving into a place of understanding and determination. Determination to keep living everyday to it's fullest and never stop trying. When I first joined this site, I was in a dark place. Through this website as a support and seeing a counselor, I feel more at peace and am better able to "deal with everything" that comes with this diagnosis. I still have my moments where I get angry and wonder why I was "cursed" with this illness, then I remember it does me very little good to dwell on the negative as stress exacerbates our symptoms. I hope you can move toward a place of acceptance, but also find a good balance of what works for you so you can feel happiness each day. It is a great that you have a supportive husband : ) I understand the frustration with tests coming back saying everything is "normal" when we clearly don't feel normal.
Thank you Ben and SaraZ553 there is so much true in your supporting words. I think a big thing for me is to learn how to pace myself, and Im just starting to deal with that. The energies aren’t the same so I need to slow down!!