I came across an article on on www.sharecare.com about Managing emotions.
Living with fibromyalgia can understandably trigger a lot of negative emotions about yourself, your life, and even your relationships. But if you can learn to manage those bad feelings in positive ways, you'll give yourself the best shot at living well with fibromyalgia. Here are three ways to start feeling better:
Say "I have fibromyalgia." Pretending you feel fine when you don't isn't the answer. In fact, people with fibromyalgia who learn to accept their condition and their fibro symptoms are better able to cope with it. What's more, research also suggests that fibromyalgia patients who use avoidance as a coping method for negative feelings tend to experience increased fibro pain. Acknowledge the fact that fibromyalgia is a real medical illness, and find healthy outlets for your feelings about it.
Write about your fibromyalgia. Writing your feelings down in a personal diary or symptoms journal is one healthy way to express how you feel about having fibromyalgia and may be very therapeutic.
Be positive about fibromyalgia treatment. It's impossible to simply smile in the face of severe fibro pain and fatigue. However, studies suggest that some people with fibromyalgia tend to "catastrophize" their fibro pain. Understandable. But it's also disempowering. Try to cast down negative thoughts and beliefs about your fibromyalgia, and begin to cultivate more positive ones instead. Seek out counselors, self-help books, or online fibromyalgia support groups that can help you foster positive, empowered thinking.
On the one hand I get what they're saying, but that catastrophizing really got to me. At the moment I have something that helps manage my pain. It doesn't make me pain free and the cooler weather kicks it up several notches. Ugh! Anyway, I can't help thinking. I have days when I'm tired and it's been a week or two sense we ran out of the stuff that helps me and I get hit with an intense wave of pain. My whole body hurts and it feels like someone's taking a scalpel to my shun bones, like I've got at least three daggers being driven into various parts of my body, and a number of nerves that feel like live wires of pure pain. Because I'm tired I feel it more intensely and am bailing my eyes out some moments trying not to scream.
I happen to live in AZ, so the summer where the night temp is still in the 80s & 90s are really nice on my Fibro pain - terrible on my fatigue. There winter's as mild as they are still kill me!! I've spent days sitting/laying in bed just crying my eyes out I'm in so much pain...and I'm pretty good at breathing through it and refocusing my thoughts. (My heart goes out to everyone where it's already freezing temps - with the clouds and cold I so wouldn't make it!!)
I'm not saying we should give into our negative emotions and have our health win the battle of living any kind of life. But I couldn't help thinking "come on!" Fibro can have a complete and total destruction of persons life. We don't die from it, thank God! But even if it's a personal "catastrophe" that we can rebuild from don't belittle how hard it is! I've been bedridden twice, currently attempting to crawl out of being bedridden, and I was a few years ago at 22/23 before we knew what was going on with me. It may not be a disaster in the sense of "disasters" but it's still a big deal!
Maybe it bugs me, cause the medical community for years told us it was psychosomatic! I can't count the number of people/doctors I've been to/talked to that were like "well...it's" blah, blah, blah totally dismissing me...nice and professional of course (unless it was family - their in a totally different group). If that's the case I guess I feel like I don't care what their studies says they don't get to go from "it's all in your head" to "stop acting like it's the end of the world." No it's not the end of the world, but it was/is the end of my world as I knew it. And when I'm in so much pain I can hardly think to breath or am just crying my eyes out because of it, dreading the next fifty to seventy years of my life being like this. Don't they dare throw "I'm catastrophizing my pain" at me!!!
You know what? I would be in that aisle if I thought it would get me anywhere. But like you said, they think it's in our head or not as bad as what we say. I say..."Walk a mile in my shoes...then we'll see what you say"
I have said that to a PA of mine, right before I was diagnosed with Geniculate Neuralgia. She actually said to me and I quote "What are you going to do when you find out there's NOTHING wrong with you...NOTHING" I told her that I guess I would be living in pain. Then I left her care. Now I have physicians that know exactly what kind of pain I am in....some of them have walked that mile...a plus!
Now I agree that we shouldn't sit around and feel sorry for ourselves, who should? But we are allowed our moments of breakdowns cuz honey...they happen and are going too....we hurt THAT MUCH. Plain and simple and that can be what we say to nay-sayers....we hurt THAT MUCH....walk a mile!
I understand very much what you are saying, but I also see what the article is saying. It is fine to acknowledge our difficulties, pain, fatigue... and grieve over all that we lost, but I think the article is suggesting not to stay stuck in that thinking for long. Instead of dreading the next fifty to seventy years, take a look at what you can do today to help yourself. what positive steps can you take today? Allow yourself to grieve and let out your frustrations, but then let it go and think positively. How can I make today better? one step at a time. Today I kicked my butt off the couch, went outside with my little boys and walked for 20 minutes. Back in the house, I am in pain and tired---big boys had to fix dinner, but I got outside today and did something to help my body, plus I enjoyed watching my little boys ride their bikes. Being thankful for the little things, doing something positive a little at a time---get some positive chemicals in the brain moving. I know how hard it is, I was completely depressed last week (pms week)---but my life is not over. It is different and it is frustrating to know that a 20 minute walk takes everything out of me when once I was a college athlete. But, I have to let that thinking go and replace it with more positive thoughts. It really does help.
Sometimes I tell myself it really is not that bad, no I am making a big deal ... I have taken my meds, grabbed my heating pad, climbed into bed .. and the next minute I am drawing a lady with hammers on her spine, knives in her lower back, rocks tumbling down. I want to tell myself 'No" but I think there is a part of me that wants the world to know, "YES!!! IT DOES FEEL THAT &$#@ # HORRIBLE!!!" On the good days, the paintings are very nice-ever so grateful I am not suffering.
I totally agree! I get that's what the article is saying. I think it was just that word that got under my skin. I took eighteen months when I was bedridden before to get back to a semi- functioning level. Even was going to school part-time online before I burned out. I hit a nasty flare-up last November and became bedridden pretty quick. We had to have my MIL stay with us over the summer so I could try and get a little more rest and handle on just taking care of my very basic needs. I'm too much of a fighter, well and resilient to let the depression keep down long. Some days it's a lot harder than others, but I'm one to bounce back. At present I'm back to being able to walk from room to room get my two year old food, diaper changes, etc. maybe put a load in the washer or switch to the drier. The progress is really slow and I'm taking one of those self-help life management classes http://www.treatcfsfm.org/index.html to get a better handle on how I can be more pro-active than I'm already trying to be.
I think it just upset me that instead of phrasing it like "some have a really hard time adjusting/accepting and moving forward" they said it the way they did. I don't think they meant to be insensitive. But telling someone who's feeling like their health as just destroyed every part of their life and is having a hard time seeing there is a light at the end of tunnel that they're really blowing things way out of proportion isn't helpful. Or it may even anger them further, because it feels like no one gets it and life may not be getting any better at the moment. I like what they're saying overall, I just thought the way they worded that part was insensitive and maybe even a little demeaning to those that have sever depression or really struggling. Sometime it's not just what we've lost, but a serious additional problem on top of the pain and fatigue. And to someone in that state it can feel more like a slap in the face, then an encouragement to see the light at the end of the tunnel.
Amen to that and you're preaching to the choir, girl! I went to a therapist for 2 sessions that were all about managing fibro in your head. Um. Really? That's pain management? Because that's what I'd gone for, pain management, not being told it's in my head and I have it in my had to feel less pain.
Oh, and Laurel? You should send your former PC your new diagnosis, along with: What will I do when I find out that X is wrong with me? Get PROPER care and respect!
Agree with you! We have to be free to feel what we feel. Sometimes fibro feels like a life sentence in prison for committing no crime! Sometimes i can pretend to be normal. I agree, we do need to look for the positive so we don't sink in the negative but it really takes a person whose been there in fibro to understand it and hopefully word it in a way that isn't insulting/demeaning/overlooking.
I'm glad to hear that, I really am! It's so heartbreaking to come down with these illnesses and to have someone tell you that NOTHING is wrong with you? They have no business in the medical field. And I'm especially glad to hear that you have medical people who have your back now.
I went back and reread the article, now that it's midnight and I'm finally awake and alert. I think that point number one is very important - to admit that one has fibro. And pretending not to have it and push through every day is exhausting and usually not productive after awhile. So yes, getting out of denial and accepting the fibro is important. Unfortunately, I'm back and forth on accepting it.
As of point 2, I'm not a journal writer so wouldn't get use from trying to jot things down. And point 3 just annoys me.
At the end of the day, I think we just do the best that we can. And we should rejoice in the small things that we can still do. They show that we're still here and contributing, even if its in a smaller capacity.
Welcome to the group, and thanks for posting this great topic!
Oh yes, the catastrophizing! It's not hard to do when you are up against an illness like this, with a still narrow AMA understanding of it! We're not well, not well rested, everything is so difficult to do and keep up with, and we fight for years to get a confirming diagnosis, but with a still narrow AMA understanding of the condition, even after the diagnosis!
The fact that this illness is such a multi-faceted, multi-system, multi symptom condition, that is by nature so very close to autoimmune disease, that most of the Doctors blame us for their own inability to evolve with their knowledge, and this is maddening! I am hoping that you have been seen by and continue to be seen by a good Rheumatologist! If you get a good one, hang on for dear life, as they can make your life BETTER, MUCH BETTER!
A big part of our problem is how we ARE TREATED by Physicians in the first place! The knowledge of this condition still generally seems to be in the dark ages! If you have been getting no where, then it's time to move on to another Doctor. as they can waste years of your time and health! This is the very origin, and reason for continuance of the castrophizing!
Stay focused on the goal of being as well as you can be, and just don't give up! We're all on your side and here for you ANYTIME!
Thanks Tammy! I have a really good doc now - just can't get into him at the moment. Really hoping I'll be able to in January.
I'm not a dramatic person either - can get stressed out, but that's more irritable-ness - but I'm a fairly down to earth level headed person. And those that are having a really, really hard time it feels more like a slap in the face, especially if they don't have/aren't getting any support or answers. I'm all for moving forward and rebuilding our lives, because we still have them. There maybe a million things I can't do, but there are some things I can. It takes time, but I think we can adjust and still find joy and hope.
Maybe it's because I've been really depressed before and I know had I come across the article then my thoughts would have been something like "great, now I'm dis-empowering myself too." Which is probably the kind of thoughts they're referring too. I just think when your giving someone a hand up, adding even a seemingly small professional wagging of a finger (whether it's true or not) is counter productive and even demeaning. I mean they even acknowledge it's understandable. They could have just left that part out and encouraged us, if we're having negative thoughts or are depressed to get help, reshape our thinking, counseling, etc. Especially sense it seems they're only now finally saying hey, yeah maybe it isn't actually all in your head after all.
And on that thought maybe they've been part of the catastrohizing (if it's actually happening) in the first place! In that light it's almost like their shifting their thinking from "It's all in your head," to "okay, okay, it's not in your head. But would you chill out about it." Ugh!
Aloha- I know you can’t die from fibro, but existing like this is not really living. I’ve had it for 5 years, some of you have had it a longer period of time, some less. All I can say is its getting worse, not better. As I read your posts I feel better that I am not so alone. We can all share if we do find something that relieves this devil inside us.
I had a spine cord stmulator implanted under my skin yesterday. This was my doc’s last suggestion for me since I pretty much have tried everything. So now I have this tingly feeling starting at my lower back and front of both legs. It feels good if I don’t change positions but always it still hurts like hell when I sit stand bend reach. The tingly feeling is low currents of electricity going through your body which is suppose to stop pain messages to your brain. I had only got it yesterday so I really need to give it more time and hope and pray for a good result.
I really wish somebody would find a cure for the millions who have fibro.
For me, the pain is an intense squeezing feeling of a million bees puzzling arnd. I feel my lower body is hurting because of loss of circulation. Maybe calcium deposits? Dr Armand says we have too many phosphates in our cells? Is there a test for this? I just feel like I need a tune up. Dr Armand has a book out. Both him and his wife have fibro. I read his book and it makes sense to me but only thing is u have to eliminate all silicates otherwise you will block the Mucelex you take everyday. If you do block u have to start all over. And they say it may take a year or so before all the calcium phosphates are flushed out of your system.
I love what was said on here!! Couldn’t of said any of it better myself!
Thank you, I needed to read this post and all the comments. This group is wonderful
Lisa
Butterfly, I won’t live another 50-70 years to put up with this pain, and that’s okay with me. I used to keep a journal when I was getting my disability, but it would be good to do. I changed my PCP today out of luck-mine retired. I wanted to stay with the same practice, but this woman thinks nothing is wrong with me. I had 7 drs send in paperwork for my disability. Good change.
I got a call from an elementary school friend about her husband and fibro yesterday. I was glad to share with her my experience. I was matter of fact. Everything I said she said yes, yes, yes… I gave her all my drs, pain clinic, etc. I feel I’ve helped.
I have heard that term but not since I was in Florida,that doesn't mean I came from the swamp into the light of reasonable medical care in moving Geographically. The first bunch I had here in Wiscosin were the same ilk of "it is all in your head" and missed my cancer. The group I have now is wonderful ,but I still see hints of them being frustrated because with what they are doing I only seem to be getting better,then I'll be back where I started or worse the next time they see me. One of the problems is the long time it takes for appt.s ,you make an appointment when you are in a bout,and by the time you get in a month or two later it has gone and they think your fine ,because they didn't see you when you where bed-ridden with pain for weeks .That is a "catastrophy" for my life and I am sure yours. When my home was hit by two hurricanes they called it a catastrophe,because of the lose of electric and water,fuel and and and. But i was okay ,I could get up andd walk and try to do things,this is much worse as it robs me not only of what I might do today ,but of even planning for tommorw ,let alone down the line as I can't count on my body to funcuntion and can't ask anyone else to either. That is a catastrophe.but do I say that no I just tell them the symtoms I' having,it just proves they were listening when they think it was catastrophizing . It is very hard for them to get it when they don't see it ev eryday.Be kind to yourself you deserve it.
Thanks for sharing your perspective! Sorry your home's been hit twice. Sounds very scary!! I think it's a lot harder to understand when you're not seeing it everyday and/or don't know enough to know when patients say they are/were experiencing this or that, that they take them at their word. Now, I happen to have a MD that's gone away from general practices and specializes in CFS/FM. I feel so blessed to have a doc that sees it everyday, is up on the latest research and so on. Getting into him at the moment is another issue, but I've improved even with what little he's been able to help me with. Anyway, !'m rambling sorry! Thanks again!! Hope things work out better for you & that your able to figure out what will work for you!
I catastrophize, but then again, other people don't go to the doctor. They just let their bodies waste away. I still don't know what's wrong with me, and even if I knew. I'm worried about walking. How much longer do I have to walk, and when am I going to end up in a wheelchair. Yeah that's catastrophizing, but if you saw me walk, is it unrealistic? My husband's board member(boss) saw me yesterday, asked me if I was limping. I told him I walk like this all the time now. He says, "Oh that's not good." Funny how strangers see something the doctors do not.