Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
First, I hope my topic will not be discouraging to anyone. I've been told by my rheumatologist that I have a "mild" case of fibro, so I know I'm able to do some things that maybe some of you can't, and I know that might feel discouraging to some of you. If this is the case, I'm so very sorry.
So, I've shared before, I'm a writer and a speaker. I have a fair amount of engagements scheduled for this year (three next week!) and am a bit concerned for a few reasons, my random bouts of extreme, brain-numbing fatigue being one of them.
I did a random search through this forum and discovered I'm not alone in this regard, but extreme, like I can barely lift a hand or keep my eyes open, fatigue can hit me quite suddenly and randomly. Case in point, this happened yesterday while out to lunch with a friend, and I had to ask her to take me home.
Other days I can run/walk 45 minutes and still function after, and as far as I can tell, there's no rhyme or reason to my surprise energy bouts or my bouts of fatigue.
I'm absolutely not ready to give up my career as quite honestly, it is one of the highlights in what can be a depressing journey. It keeps me positive, making me feel like I can still be productive. But it's also hard to schedule things, not knowing how I'll feel.
When I'm feeling good, I think I can do everything and accept every engagement. When I'm feeling ick, like lately, I want to quit everything and spend the rest of my life in bed. (Yes, I can be a bit melodramatic.)
And this makes me sad, frustrated, and angry. I hate, hate, hate being my own limiting factor. And I keep trying ways to fix this. I'm obsessively on paleo, take supplements, stretch throughout the day, exercise 5 days out seven regardless how I feel. Yada-yada-yada. But I still get sideswiped.
This Saturday hubby's taking me shopping for much-needed conference attire (as I'll be going to a conference at the end of this month, that I may or may not spend in my hotel room.), and quite honestly, I'm worried if I'll have the energy to try on the clothes I need. We'll probably go to one store that, though pricey, is the type that will bring outfits to you.
So I'm sad, I'm mad. I truly want this all to go away or at least to figure out a way to thrive despite it.
So, I've shared before, I'm a writer and a speaker. I have a fair amount of engagements scheduled for this year (three next week!) and am a bit concerned for a few reasons, my random bouts of extreme, brain-numbing fatigue being one of them.
I did a random search through this forum and discovered I'm not alone in this regard, but extreme, like I can barely lift a hand or keep my eyes open, fatigue can hit me quite suddenly and randomly. Case in point, this happened yesterday while out to lunch with a friend, and I had to ask her to take me home.
Other days I can run/walk 45 minutes and still function after, and as far as I can tell, there's no rhyme or reason to my surprise energy bouts or my bouts of fatigue.
I'm absolutely not ready to give up my career as quite honestly, it is one of the highlights in what can be a depressing journey. It keeps me positive, making me feel like I can still be productive. But it's also hard to schedule things, not knowing how I'll feel.
When I'm feeling good, I think I can do everything and accept every engagement. When I'm feeling ick, like lately, I want to quit everything and spend the rest of my life in bed. (Yes, I can be a bit melodramatic.)
And this makes me sad, frustrated, and angry. I hate, hate, hate being my own limiting factor. And I keep trying ways to fix this. I'm obsessively on paleo, take supplements, stretch throughout the day, exercise 5 days out seven regardless how I feel. Yada-yada-yada. But I still get sideswiped.
This Saturday hubby's taking me shopping for much-needed conference attire (as I'll be going to a conference at the end of this month, that I may or may not spend in my hotel room.), and quite honestly, I'm worried if I'll have the energy to try on the clothes I need. We'll probably go to one store that, though pricey, is the type that will bring outfits to you.
So I'm sad, I'm mad. I truly want this all to go away or at least to figure out a way to thrive despite it.
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I'm alive, I'm sleeping like a rock, and for some reason I wanted cherry juice so that seems to be helping. (??? Weirdo that I am.)***Infamous therapies over history:1. The Attic. The madwoman in the attic is a motif in literature going waaaaaay back: the nutty female relative is locked in the attic. (See: Jane Eyre by Charlotte Bronte for a grotesquely racist version of it, and Charlotte Perkins...
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
I get sudden spells of profound fatigue too. Came close yesterday when I was grocery shopping. I thought it was going to be another one of those leave the cart and go home now episodes. I managed to finish but I was past done when I got home. Some of the groceries are still in the car.
I like Corvalen but I will warn you that sometimes it is better to give in to the fatigue than use it. I've had times when I felt a lot worse in the fatigue department once it wore off. I tend to reserve it for dire emergencies like funerals or something else that I must do.
You can't *fix* being ill with FMS. What you can do is learn to adapt and pace yourself. Even when you feel good, you should respect your limits and not overschedule anything. What you don't want to do is set yourself up for a flare which could go on for days, weeks or even months. I don't recommend flares. If you think that you are not productive now, a flare will soon set you straight on that point. Its a finely tuned balancing act at all times.
Jen - you are thriving with this illness. You can still exercise, write, give talks and travel. The key is learning your limits and respecting them. Your life is not over as long as you live it at a slower pace. Be grateful that you can still function well on any level. Stop comparing what you could do before to now. It is not productive and it is clearly agitating you. Sun Tzu said "keep your friends close but your enemies closer." If you can find a way to embrace this illness things will suddenly be a lot simpler.
In the beginning, we all struggled with accepting limits and endless smacks upside the head from FMS just when we thought we had it all figured out. There is no figuring it out. Being emotional flexible and just rolling with it seems to work the best. Give yourself permission to have a short pity party and then try to move on to the next step. Its a process and with time, you'll get through it. Take care of yourself.
You said to let go of what once was. That is also hard. I've been an athlete and "producer" all my life, and it seems that might have become a bit of my identity. I suppose I need to find a new identity.
You said I am thriving. I really appreciate you saying that. There are times I feel incredibly strong mentally, just for pushing through. At dinner the other night, my daughter told me she thought I was strong. She said if she were me, she'd just cry all the time. It touched me deeply that she'd say that. Not that I want her pity, as I really don't want her to worry about me. But it made me proud of every time I make the choice to push through.
My husband has said much of what you just said about pacing. I need to learn that. It's hard because my ambition (and often pride) pushes against my reason. I'm also not entirely sure what that means or what I can do or can't do, if that makes sense. I was thinking of scheduling an apt. with my rheumatologist to get his advice on pacing, etc.
I'll try that supplement, thanks.
Some days, like today, life feels very hard and sad. I really miss my old life. I miss the old me. I'm a person of faith so I believe--know--everything happens for a reason and that all things work out for the good. So now I need to focus on some of the good.
I do want to say, Fantod, you are such a caring person and you always have such wisdom. Thank you for taking the time to respond and help.
I miss my old life too. I was a production manager in the film industry. Now I am tasked with deciding whether I can make it to Target for detergent or if I have the cognitive ability/stamina to install a new printer. I try not to attach any significance to my limitations because I've given up torturing myself for Lent (LOL).
If you really can not get past this, I'd like to gently recommend that you think about getting some professional help. Cognitive Behavioral Therapy is a good choice. It will give you tools to cope with a diagnosis of chronic illness. Many of us see someone for extra support.
Fibromyalgia should be an Olympic sport. It is not for the faint hearted. We all deserve a gold medal just for hauling ourselves out of bed in the morning. You are new to this and your feelings are pretty normal at this stage of the process. Like I said, if you think that you are stuck, get some help.
In the meantime, let us know how we can help. We are, afterall, all in this together. Take care.
This is not how I planned for my life but at 63 I need to keep the check book balanced, that is what I call my energy. Do not withdraw more than you can afford as those fees (like hitting a brick wall) makes it hard to be prepared for things I want to do.
Learned my now normal more than once now with more than fibro to consider, but I still to choose to be able to enjoy my life and work at it. This did not come easy for me as I just thought if I get past this I will be better and I will beat fibro LOL the joke was on me. It actually took cancer to really understand my new normal and work with fibro not against it.
Like I am not a morning person any more and I use to be out the door by 6:30. At first I just kept trying now no appointments until at least 10:00 or 11:00. I last longer and enjoy things more. One thing is I am not working any more, but looking into some part time work, for my son! He will let me set my own hours.
Keep on working at it and doing what makes you feel good, just balance how and when you do it. Thriving is much better than saying living with it.
laurab