Fibromyalgia

The start of a fibro flare

Roll up, roll up, it’s that time again! Time for the coping strategies and positive posts to sit quietly at the back whilst the fibro flare takes centre stage. Ladies and gents, let’s not get cocky now; it’s time for the flare to put me in my place. I know it’s coming, I know how it feels, and yet it surprises me every time. And every time it knocks the wind right out of my spoonie sails.

Last week I got back from Portugal feeling pretty proud of myself for surviving my first music festival of the year. It was heavy going and I expected some backlash, but I was feeling fairly optimistic – I didn’t push myself too much and I was the most sensible I’ve ever been, so a small part of me that thought I might have got away with it.

Sadly, with pain like this, I can only assume the fibro flare saw me grooving to Good Vibrations and has come to do some damage to my arrogant, thoughtless, dancing self.

The festival, combined with a seven hour flight delay at the airport, meant physical strain and interrupted sleep. The first week back I felt truly exhausted, like I couldn’t catch up on the good night’s sleep I should have had – missed to sitting upright playing cards and drinking overpriced drinks in the departure lounge. Each night my bed time got earlier, but I was yawning through meetings and sleeping on trains and felt like my body was moving on the outside whilst I hid, nervously inside the shell.

This week the exhaustion has continued but with it comes the pain. Today, a pain so severe that I can do nothing but politely acknowledge the arrival of the flare, tip-toe around gently and whisper so as not to aggravate it further, hoping that it will leave me alone by the end of the week.

aqua deer
Image via Aqua Deer

My muscles feel like I went to body pump last night, and then squeezed in a spinning class before work this morning. I’ve never worked them so hard, yet I didn’t do a thing.

My knee joints feel so painful I think they’re about to come apart, like a raggedy old doll who’s been pulled in too many directions too many times.

My fingers hurt with every touch of the keyboard, like I broke them months ago and the bones haven’t recovered.

I’m so tired I could fall asleep in the middle of my dinner, like a newborn baby has woken me every hour of the night and now I can’t focus on a single thought without my heavy eyelids closing.

Luckily, I am nothing if not experienced. I know what’s ahead of me and I know how to deal with it. Remember the cycle I posted a couple of months ago? I’ve got a few more days of pain before I can feel sorry for myself, then get angry, and then I can go back to feeling strong and cocky all over again.

the cycle

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53 comments on “The start of a fibro flare

  1. The vicious cycle of our life, I’ve been in a flair for a week! Hoping we both feel much better soon!

    • Oh no! Back atcha, hope it passes quickly. 🙋

    • I know that all too well. I’ll be doing well (doing too much) and Fibromyalgia takes the wind right out of my sail and also feels like I’m being torn apart or like I’ve been beat up. That picture is a perfect representation of way it feels. I hope you are doing well coping!

      • I am getting every bit of what you said on this post went to Washington DC two weeks ago with my son who also has fibro. We said we will pace ourselves, take it steady as I have osteoarthritis in my hands, knees, and hips but our original flight (which was direct) was cancelled meaning we had to do a connecting flight first leg to JFK fine no problem second leg we didn’t know where to go had to collect luggage put it where second flight departing from stressing as we only had two hours to find what we had to do. Finally reached the plane very small and we hit turbulence never been so scared on a flight people being sick in the aisle relieved to get off that plane alive. Go to luggage collection no luggage stress is kicking in big time now we had put all our meds in our hand luggage as I had feared. Take 5 hours off the time as they are behind the uk. Makes for a very long day. Luggage arrives at hotel at 2am. Boy we didn’t know how far apart all those monuments were. By 2pm every day we were back in our room in agony. By day 3 the thought of putting one foot in front of the other was getting harder. By day 7 I was so glad to be coming home. Amazing place but too much my big toe flared up and kept me awake all night one night my knees were so blown up. But if we don’t do these things we sit and life just goes by. So now I am suffering and couldn’t understand why I was feeling so tired 2 weeks later until seeing this post I have had fibro for over 25 years so should be used to it by now but I think there is still part of me that denies its fibro because it’s my joints that hurt so much. But you described it all here. So thank you

      • Oh Jackie, you describe it so well! That flight and arrival sounds absolutely horrendous. One change and we’re completely destroyed. I hope you’re having a good day today, and thank you so much for commenting.

      • It’s been another tough one every joint in my fingers hurts it hurts to. End my knees but then hurts to straighten them so can’t win really. Damp weather outside isn’t helping either. I know it’s going to be tough getting comfortable tonight as my hips are also feeling very tender like I’ve been beaten all over with a stick. Extra pain meds have had to be taken which I absolutely loath doing. This sounds very dramatic but there are so many days I would happily have my legs amputated to get rid of the pain. It just seems never ending and the depression then kicks in you know your brain is willing but the rest of the body says not a chance. I could say luckily I don’t work but it’s not lucky really as I spend so much time socially isolated on my own and then get upset when 3 ladies I have known for 36 years when we were doing nurses training are posting pictures on facebook about what a great few days they are having in London going to a shoe and visiting The Shard. I too have known them for 36 years and we were once so close but somewhere along the line I got dropped out of being invited to anything social. It makes you question yourself as I am the type of person that would push myself to keep up with them and then suffer when it’s over but I never get invited. So besides all my cross stitch friends of facebook I have my own company and that gets very lonely at times.

      • I know all too well also.

  2. Hugs hun. So glad you got to enjoy the festival but sorry about your flare. If Fibro were a person..I couldn’t be held responsible fir what I would do to it! It’s so frustrating when we try to live our lives & the flare us hits us at full speed, even a slow one!
    I’ve been in a flare for over a month now since moving, with serious tension & occipital headaches. Sometimes, it makes ya want to throw in the towel. Only fellow sufferers understand the pain & fatigue, great post to raise awareness
    Heidi x

    • Thank you so much Heidi. You’re so right – the spoonie community is wonderful at times like this. So sorry you’re a month in, I really hope you get some relief from this soon. Thinking of you xx

    • So good to know there are others that suffer with this. The pain is incredible. I try so hard to continue to live my life and some days are truly better than others.

    • wyldchilliqueen

      I’m facing moving before the end of the year. I’m dreading it. Been here for close to 17 years. And the need to move is out of my control. Let’s just say I’m very very annoyed with a former neighbour with an axe to grind with the landlord.
      I’m seriously scared. Right now I’m recovering from a 5km fun run that I mostly walked. Plus the dance party at the end…… my phone logged 15km movement. The walk was only 5. Sigh. But that’s only my legs so why are my shoulders so sore?

      • There’s just no logic to fibro pains, is there. Still, take comfort in the fact that a 5k run and a dance party means the move us doable. Hard, painful, emotionally draining and with a lot of frustrating moments when you can’t unpack as quickly as you’d like (I’ve moved a LOT) so just take it slow and give yourself time to adjust to the change. Good luck! 🍀

  3. I’m sorry you’re in a flare but I have to say, I love the way you describe your pain. It’s such a hard thing to do yet you do it so well. Here’s to getting back to strong and cocky very soon x

  4. I have never seen this before, it makes a lot of sense. I have been so tired the last 5 days, then the pain, and now I have been sitting here crying for the last 3 hours.
    It helps just to know I am not alone.

  5. Like Ragsda02 said, you wrote it so correctly and with so brutal honesty, I was crying as I was reading this b/c I can relate to every single word. And as Chronic Beauty stated, I, too, would not be held responsible for what I would do if I met “Fibro” as there wouldn’t be enough money made to bail me out of jail!!! I am in between “I’m sore” and “I can’t do this” and on day 6 of it all…. I do thank you for writing this and I really hope all of us start felling better soon!! And remember ladies–WE ARE NOT ALONE IN THIS FIGHT!!! Kathy

    • Aah thank you Kathy. Thanks so much for commenting, but also for the reminder. We’re not alone and we’re bloody strong, so we should be very proud of ourselves.

  6. no one is going to like what I am about to write. but that’s ok we all deal with it in our way. it is a very personal story for each of us . At first I was mad and frustrated because no one knew what I had. then they gave it a name and said ‘ there is no cure’ sadness. then they tried giving me all kinds of meds. The side effects were worse. So I decided to deal with it in my own way. Ignore it the best way I could. if I got out of bed stiff I would exercise no matter how much it hurt because at he end I felt better and felt I had won over it. Then I refused to lay around and used distraction to ignore the pain. I started volunteering for the homeless and at my church doing what ever I could Somedays it was all I could do to put one foot in front of the other but I did.
    The one thing I knew would not make me better and even worse was to talk about it . complain about it and go to groups where everyone whined about it. It only brought me down. I refuse to wear a shirt or anything else that says feel sorry for me I have fibro. I don’t see the point. it is what it is . we just have to keep on moving. do I have empathy for anyone in pain yes . do I think some people have it worse than others yes. Am I aware of all the other conditions that go along with it . yes I have all of them. do I get discouraged yes . but I pick my self up and keep on trying…. never ever give up martin luther King said: if you can’t run.walk if you can’t walk crawl and if you can’t crawl just keep moving. I wish you all the best . May God surround you with his loving arms and let you know he is with you every step of the way.

    • Hi Mary

      Why would I not like that comment? I couldn’t agree with you more! It sounds like you have the same mentality I do. It is what it is, but it’s not going to stop me, and I don’t want to sit in group with people telling me how life their hard is. I still go to work, for walks, to festivals, etc. If you check out some of my non-fibro blog posts you’ll see that your mentality is very similar to mine.

      However, I would say that (to be clear) I am definitely not asking you to wear a t-shirt that asks people to feel sorry for you, and I think we probably differ in that I don’t see #ISpeakForPain as asking for sympathy. I think that there are some very serious problems with our healthcare system, and I think it is a problem when people with invisible illnesses have to prove their pain. I think it is a problem when #PatientsNotAddicts is a trending hashtag. Therefore, I want to speak about pain to encourage more work and research into this area, so that we end up with helpful meds and support from GPs.

      That, of course, doesn’t mean you personally have to speak for pain. If you choose to cope by ignoring it then that is 100% your choice. I choose to cope by speaking up, raising awareness and challenging the system so that new patients don’t got through the same frustration and sadness that you did. My blog addresses the upsides and the downsides of fibromyalgia and I often blog about flare ups so that people know what it feels like, and can start to understand the condition. I hope it doesn’t come across like whining and asking for sympathy and, if it does, well, there’s something wrong with my writing.

      Good luck with it. I really love the way you’re coping and it sounds like you’re doing some brilliant things. And I totally agree – JUST KEEP MOVING! 🙂

    • Well said Mary. I deal the best I can. Sure, I want my friends and family to understand when I can’t go somewhere or do something. Other than that I am not looking for sympathy from f.b friends or strangers because my shirt says I’m in pain.

      • Carolyn Hodges

        What frustrates me is it is one of the “invisible ” diseases and people find it hard to understand when you have to say no. I tell them it is the back injured in a car wreck, they understand that.

  7. Love your wheel! It definitely describes the cycle. Every time I think I’m doing good without the Lyrica I start down that flare-up rabbit hole. Luckily, I have a good doctor that will get my Lyrica refilled and not scold too much because I stopped taking it. Everyone has to find their own way through this disease since it manifests itself differently for each person. I don’t know of anyone that legitimately has this that wants to wear a scarlet letter to gain sympathy but having this forum is nice to get ideas of how others cope. There is power in numbers!!

    • “Flare-up rabbit hole” is a great phrase! I know exactly what you mean. And you’re absolutely right, sometimes just having the community is what we need. If you’re active on social media, check out the “spoonie” community on Facebook and Twitter – there are some wonderful people sharing some great stories. More than happy to point you in the right direction if you wish! x

  8. Hi I was diagnosed with fibromyalgia about 3 months ago. At least I now know I am not going mad. It does not help the pain. The way you describe a flare is so true. There Is a common thread with fibro suffers we are STUBBON as he’ll.

  9. When it hurts to wear clothes and you can feel every joint in your body, you’re miserable.
    I’m not sure how much good I’d be if I did force myself to go….
    I dont, I soak in Epson salts scented with lavender and I take pain pills and I whine! That’s how I get through these awful flares. Hate it !!!

  10. Crinkly in WI

    I too am new to this dreadful diagnosis-though after getting defined, I’ve probably had most of these symptoms for a few years now. I work in a health care setting and the last thing I want to do is complain about my own issues but some days I don’t know how to get others to understand why I am not the perky super hero they expect. It has been difficult adjusting my lifestyle to accommodate the demonic symptoms.

    • Sorry to hear you are struggling. Hope things start to improve for you. Just remember talking about your pain doesn’t have to be complaining, it’s all part of the coping strategy. It does get easier to manage over time, and hopefully you’ll find some useful tips here.

  11. Sammpanther

    I don’t know what it’s like to only have a flare last a week. My flares are months long. I will go months without a flare and months with one. All i can do is wait for it too leave. 5 years and I still don’t know what to do with myself except eat right and do my yoga…….

  12. Sammpanther

    You all need to check out Kratom. It’s the only way I function. It’s an herbal supplement that acts exactly like an opiate. It’s amazing. I’ve been using it for three years now.

  13. Jelaine5280

    Thanks for posting this as I feel like this and go through the same cycle of emotions!

  14. I suffered with fibro many years before being diagnosed. I was told to see a psychiatrist since none of the tests found anything wrong. I felt victimized by the doctors. Now I feel victimized by insurance that doesn’t want to cover my Lyrica. I hope you’re successful in raising awareness and affecting change.

  15. I completely understand I’m in the beginning of one myself, thanks you so much for the article it made me feel less lonely 🙂

  16. Pingback: The 3 things to do in a flare up | A LIFE LESS PHYSICAL

  17. I was diagnosed 3 months ago and it has been a lifestyle change for me. It took forever for them to figure out what it is and I refuse Let It win there are days when I can’t get out of bed I pushed forward as much as I can. Getting back into what brings me peace and that is going to the gym. But when I have flares I just want to scream get out of my body. It’s good to know there’s a community out there I’m learning more through others thank you all for sharing.

  18. what really really feels good is water aerobics in 80+ degree pool. And when I get out of the pool, my body is pain free. It’s amazing. But about 2 hours later…. ouch. s l o w. pain returns. But at least there is a moment in the day when I feel no pain !!!!! I specifically hurt in neck, low back, feet, knees, so so tired all the time, and I pull muscles in the morning while trying to get ready for work. I feel like the Tin Man in the Wizard of Oz . . . “oil can…”

    • Oh my goodness, the Tin Man!! Yes! It’s exactly like that!

      • Carolyn Hodges

        Took 3 years to get diagnosed at UMC. THen my regular doctor would tell me to take tylenol and refused to prescribe anything stronger. MY current doctor tapped his fingers across my shoulders, making me tense and jump each time and said I guess you need something for pain. ANd when I told him about trouble sleeping because of wrinkle in sheet or nitegown gave ne a muscle relaxer for nite. Which is not on next years formulary for my medicare.

  19. Lee Ann Van Schoick

    I can relate for the thoughtful ways to describe what Fibro can do to people. I have been with my family for two days which I enjoyed. However, now that I am back home I can feel a spell coming on which will put me down for a couple days, Stay strong and thanks for your post

  20. Patty Huffman

    This could have been written by me. Last week my husband & I travelled to Las Vegas so he could attend a convention. We had 2 long flying days. Four full days in Vegas which were crammed with activities. We’ve been home a week. Yesterday I had the best intentions of enjoying a day of cookie baking with my daughters & grandkids. Everything started out well, but as we got into things I started feeling stressed from the pain & feeling overwhelmed by the kids screeching & literally running circles around the house. Unable to hold it together I had a major meltdown & broke down crying. I was unable to explain what I was feeling at the moment so everyone went home angry at me. I’ve tried to explain it to my husband & he seems to understand somewhat. Two daughters are still a bit upset after I made an attempt to explain what seemed to happen. Another daughter is still furious with me & says I ruined the day. I had already acknowledged that, tried to explain, & ask forgiveness. Anyone else have similar experiences or have I completely lost it?

    • Hi

      I would say don’t be so hard on yourself. This illness tends to come at us when we least expect it. I pushed myself on a holiday to Washington a few weeks ago and am still really struggling with the pain and then we get frustrated after all our brains think we can do these things but the body just decides nope you need to slow down. Do your children actually understand how complex fibro is maybe show them some articles on it if they will listen. 3 of my 4 children actually have fibro themselves so I think they understand more in some ways it was a relief being away with my son as he was unable to walk any further than me. If it had been my eldest son it would be totally different as he doesn’t understand it at all and has no compassion or even empathy. I’m hoping this will change as he recently became a father but not sure.

      Your children will come round when they are ready but please don’t feel you have to keep apologising to them or making excuses. It’s out of your control. Next time they have the flu explain to them that on bad days you can feel like that and worse when having a flare and that’s without the pain. Sending you a gentle hug I hope things settle down for you over Christmas.

      Jackie

    • You definitely haven’t completely lost it. And see Jackie’s reply to you below – don’t be so hard on yourself! I really struggle to maintain energy and being around kids is one sure fire way to drain energy in a heart beat so I say well done for surviving as long as you kids! I think all you can do is keep talking to your daughters and help them to understand how it feels. Hopefully they will try to understand. And if not, well, thank goodness for those who do! xx

  21. Yes…exactly!

  22. Joann Crawford

    I am so sorry for your pain my fibro-sister. I know this pain and it is ugly and as real as being in a fight with the most notorious prized heavy weight boxing champion of the world and we are loosing because this heavy weight champion is bigger, stronger, heartless, having no compassion what-so-ever, a beast and most of all, it’s INVISIBLE!!! This is the reason that we are overpowered but not defeated, seemingly weak to on-lookers such as (family and friends) but we are actually stronger then they will ever be because, this chronic unpredictable pain is woven into every fabric of our lives but yet we amazingly rise back up everytime after being knocked down and at times knocked out not just by the prized fighter, but by the very ones who are suppose to care for us the most. They continue to punch us with their thoughtless remarks, looks, worthless problem solving mechanisms and never have they worn a stitch of that fabric of chronic unpredictable pain which comes having fibromyalgia. All we are needing from anyone is: Love, patience, understanding, empathy and not your sympathy because we know that you would not be able to walk a mile in our shoes. We are loving souls and not cold hearted souls who simply desire to wish undue suffering on our loved ones or anyone for that matter in order to get you to understand what we are going through. This is a long and hard never ending road that we travel and face and how often we face it, again, it’s UNPREDICTABLE, GET IT!!!! This monster steals from us and never returns our most valuable possessions to us such as: Our energy, joy, peace, rest, sleep, ability to function normally, social life, happiness, skills, our life that we once had but now forever changed and now it’s threatening to work on our love if we are not careful because this is a lonely battle and we eyewitness ones once in our lives now hightailing and running away from us as if we are contaminated with some sort of horrific unheard of disease. I don’t know which pain is worse, this pain of ignorance that comes on the behalf of others or the pain which comes from fibromyalgia? We are true fighters, survivers and Yes, ” Winners!” All of my fibro-siblings you are in my prayers because prayers is what will help us get through this terrible trial that we are experiencing. Stay strong and never give up because the God of the Bible, “Jehovah God” (Psalms 83:18) (look in one of those old family Holy Bibles to find his name) promises better (Revelation 21:3, 4) God himself says that he “will be with them’ and “he will wipe out every tear from their eyes”, “nor pain be anymore. The former things have passed away.”. Yes, what we are living with will one day be a “former thing” in Jehovah God’s and his son Jesus’s eyes. I don’t know about you, but, I see nothing else in this world that can ever make me believe else wise. Just like written on money the very words: In God We Trust, well, it’s definitely time that we start doing just that, putting our trust in God because he will never let you down. I know of this Awesome website in which we all can go to and find an abundance of info regarding our illness /condition or whatever we are plagued with and we will truly be informed and comforted even more so. Please download for free JW.Org and tap on: The Official Website Of Jehovah’s Witnesses. Then scroll all the way down to the bottom and tap on: Watchtower ONLINE LIBRARY – and in the Search Box type in: Fibromyalgia and you will see lots of articles to help you along the way. Also, feel feel to back up and go back to the homepage of the JW.ORG websites and enjoy everything that this cite has to offer to you and whole family young and old FREE OF CHARGE. I really hope that my heartfelt words reached out to someone and begin to help uplift you, because all of your comments right before my very long one ,honestly, did uplift me. Thank you for reading and truly understanding this invisible pain called FIBROMYALGIA. You may keep in touch to share a thought with me. Joann (crawford joann1@gmail.com)

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