Skip to content

What A Fibromyalgia Flare Feels Like

Posted in Uncategorized

I blog openly about my mental health issues, and I think occasionally I mention that I have Fibromyalgia, a disorder that causes widespread pain and fatigue, as well as memory, concentration and sleep issues. One of the fun features of this condition (aside from the many friends it can bring along, like IBS, Interstitial Cystitis, Raynaud’s Phenomenon, depression, anxiety, and suicide) are “flares”, when your symptoms go from sucking on a daily basis to sucking five times harder on top of all five business days of sucking you’re already experiencing getting stacked on you all at once. It’s not great.

A lot of people in my life will hear me say, “I’m having a flare,” but I don’t think I’ve ever explained what that means. I’m going through one right now. It started last night, and I thought, “I should really pay attention, so I can tell people what happens and how.” So, here’s what happens when I have a Fibromyalgia flare. Other people might experience symptoms in a different way, this is just what happens to me:

1. I notice my face feels hot, like I’ve been out in the sun a little too long.

2. My fingers and feet swell up, and the joints become red and swollen.

3. That hot feeling in my face spreads through my whole body. It feels like having a fever, but if I take my temperature it’s normal. I still get chilled like I have a fever.

4. Raynaud’s Phenomenon makes my feet cold. They take on a bluish tint and hurt the way your hands hurt after you’ve played in the snow without mittens all recess. Socks, hot water bottles, etc. are kind of ineffective at this point, but I always try.

5. Fatigue. My entire body feels heavier. Today, even lifting my arms up to type has been a challenge (some days, it’s not even possible, or my hands hurt too much, so I use Dragon Naturally Speaking to do my work).

6. And let’s not forget pain! All of these symptoms come pretty much in this order, one right after the other, but sometimes I don’t realize I’m having a flare until the pain ramps up. My bones feel like there’s something that’s inside of them trying to push out. My muscles ache like the first day after a hard workout. When you have Fibromyalgia, there are specific spots on your body (and they’re basically the same on everyone) that are always painful to the touch, but they become super sensitive during flares. I would describe the sensation of triggering one of these areas as getting an electric shock, followed by a lingering, burning pain. Sometimes, just your clothes are enough pressure to cause this.

7. The pain causes lack of sleep, as well as lack of focus. If I can sleep, it’s not well, and I wake up tired. This contributes to my difficulties concentrating or communicating well. I end up reading the same page over and over, or starting to write something and wander away for a while, only to be surprised when I come back and realizing, oh, I didn’t finish that thought. I started writing this relatively simple post at 11:00. As I write this, it’s 12:21, and I’ve written 536 words.

Most of these symptoms are alleviated by marijuana, which (given my history of destructive, opiate-related behavior) is the only pain medication I trust. The only things it doesn’t help with are swelling, which I take ibuprofen for, and Raynaud’s, because what the hell even is Raynaud’s? Why does it do that? But yes, it even helps with the brain fog and concentration, depending on which strain you get.

If you suffer from Fibromyalgia, I’d be interested in hearing if we share any of the same symptoms during a flare. Sometimes, because of the attitudes toward it at the time I was getting diagnosed (and those are thankfully getting better), I still wonder if we’re all just making it up. Which is absurd, but when you hear it from doctors and random people who think the problem is that you’re not doing enough yoga, you start to doubt everything. Anyway, share in the comments, or if you have any questions about Fibromyalgia, just put them there, too.

35 Comments

  1. I got my diagnosis of fibromyalgia about four years ago, and I still get those side-eye glances like I’m making it up. I even have a coworker who also has it but gives me those same looks because my symptoms are different than hers (and not co-morbid with Rheumatoid Arthritis).

    During one of my flare-ups, I definitely get the fever-like feelings, where I feel warm but I’m shivering… and my nails turn blue. I get pain in several joints… but mainly my hips, ankles, wrists, and (weirdly) right pinkie finger.

    May 26, 2016
    |Reply
  2. falalala
    falalala

    I have fibromyalgia as well. I don’t have Reynaud’s or the feverish feeling, but the joint swelling (especially in my fingers, and particularly, for some reason, in two fingers on my right hand, which tend to swell up like sausages and hurt like holy hell), severe fatigue, sleep deprivation, “foggy” feeling, and so much pain that it literally hurts to wear clothes are all very, very familiar.

    I also have a few of those fibromyalgia “friends”: IBS, depression, and anxiety, although the latter two existed well before most of my fibro symptoms, and are exacerbated at least as much by my PTSD as by the fibro. On top of that, I have an assortment of maybe-related-maybe-not health problems that my doctors are still trying to sort out; I tend to summarize them as “basically, my whole body hates me.”

    I don’t live in a state where medical marijuana is legal, so I’ve never had the opportunity to try it and see if it would help. I take gabapentin and use prescription painkillers, and have previously taken Celebrex for the joint swelling. (I had to go off it because it conflicted with one of the medications I take for PTSD – it wasn’t a fun decision to have to make, but the PTSD might have killed me without medication, so I didn’t really have much choice.) Those things help somewhat, but not nearly as much as I’d like them to, especially since I’m one of the “lucky” people who both can’t get high on opioids and also can’t get much pain relief from them, so my pain meds generally just mean I’m hurting really badly rather than hurting extremely badly.

    And yeah, I still get told that I’m making it up or am just “dramatic” or “too sensitive.” People are really, really bad at accepting the existence of health problems that don’t have a physical THING you can point to, like a rash or a tumor or a broken bone, especially when we still don’t entirely know the cause of said health problems. Whether it’s depression or fibromyalgia or celiac or anything else along those lines, there’s always some jackass who will helpfully inform you that it’s not a real problem, it’s all in your head, and you’re probably just a big baby. It’s profoundly frustrating.

    May 26, 2016
    |Reply
    • Aletheia
      Aletheia

      “People are really, really bad at accepting the existence of health problems that don’t have a physical THING you can point to, like a rash or a tumor or a broken bone, especially when we still don’t entirely know the cause of said health problems.”

      Uuuuugh, I’ve gotten this so many times with my migraines. My mom especially brings this up almost every time I mention having one – though, luckily (???) not in the “you’re faking it” way, but in the “there HAS to be something that’s causing them! I don’t think the doctors did enough, we have to try other things, have you tried [list of things I have tried, many times, just to make her shut up].” I know (most of) my triggers, I had plenty of tests done, and there’s been no physical causes for my migraines (thank god – I don’t think I could stand having brain surgery). They just happen, but that’s not acceptable to her…

      May 26, 2016
      |Reply
      • iheartbusterk
        iheartbusterk

        Oh migraines the bane of my existence. My big problem with them is people who presume that they’re “just” a bad headache (although as someone who also gets bad, non-migraine headaches, those can be very debilitating as well) and I always have to bite my tongue and tell them that unless they’ve hit themselves on the head with a hammer a couple of times plus had visual auras and a smidge of nausea that they don’t get it.

        May 28, 2016
        |Reply
      • I have severe chronic migraines, likely from my premature birth at 28 weeks, which caused hydrocephalus and cerebral palsy. I am quite high-functioning, but the migraines have only responded to Botox and valproate. I wrote a longer post at the end before I saw your post about migraines. Have you ever been assessed for Botox?

        June 7, 2016
        |Reply
    • Caitlin Persin
      Caitlin Persin

      I have chronic pelvic pain and chronic migraines and I don’t respond to opioid pain killers either. Usually they have little to no effect and one of my hippie friends doesn’t understand or believe me when I tell her that I hate taking narcotics because all they do is make me sick and give me insomnia when I take them too close to bed time. I have pretty much just taken to only going to the doctor if I have an extended issue because it takes so long to get care, often when I finally have the appointment my pain is drastically reduced that week, or I get doctors that are seem frustrated that very few attempts at treatment have worked. Chronic pain is no joke.

      May 30, 2016
      |Reply
  3. WrightNDesk
    WrightNDesk

    My flare-ups are really hard to observe to another person, because nothing looks physically wrong with me, but I can feel it. All my joints will get exceedingly stiff and painful. My ring and pinky fingers will start to curl downwards and feel weak, so much so to the point I sometimes have to tape them straight to alleviate the pain. My shoulders especially get bad, to the point I can’t lift them. If feels painful, like a just lifted weights and overexerted myself, but also heavy, like I’ve still got those weights dangling from my arms.

    My knees will get stiff and sore, and lock up. In really bad flares, I can’t even walk. My balance will be shot, and my legs will feel as weak as a newly born deer. I also get the problem of sleep; if I can sleep at all, I wake up feeling as if I didn’t. I can get 8 solid hours of sleep and yet I’ll feel like I was just awake for 72 hours straight.

    Worse, though, are the changes that happen to my head. I’ll get excruciating headaches, but ibuprofen rarely makes a dent in them. They really feel more like sinus headaches, like the onset of a head cold. My thoughts will get jumbled, focus is impossible, my speech comes out weird and I lose my words in the middle of a sentence. I’ll get dizzy even sitting down, like constant vertigo. And then there’s the disassociation. The pain gets so bad and my thoughts get so jumbled that I just… slip away. I’ve seen disassociation illustrated as a box, with another, transparent box off-set from it just a bit, and that’s how it feels.

    I don’t get swelling, and that’s how it was immediately ruled out that I don’t have arthritis (which I thought I did, due to the joint stiffness). I also have IBS and Raynaud’s, though the Raynaud’s doesn’t act up in conjunction with the Fibro most of the time. Also have anxiety and (most likely) bipolar disorder.

    All I’ve tried for the pain was a muscle relaxant that helped me sleep some, but it also made me suicidal. After I ran out, I had stopped seeing the doc that prescribed it (who also diagnosed me really quickly, due to having fibro herself), and now I’m told if I want something for the pain, I need to see a specialist, which I can’t afford even with my insurance.

    May 26, 2016
    |Reply
  4. Jera
    Jera

    Hey. I have been diagnosed now for about two years. I doubted the diagnosis, but based on my reading, I think I’m about ready to accept the diagnosis. I had a brief reprieve were I thought I was going to get out of this with a vitamin D deficiency, but no luck yet.

    1. Yes, and usually at the same time of day. Early evening for me. I feel like I have a fever, but I don’t actually. I can also have hot flashes during this.

    2. Yes, especially my fingers, but I can also pop the bones in my fingers, toes, and ankles merely by flexing them. Sometimes my back will pop from taking a deep breath.

    3. See 1.

    4. I managed to avoid Raynaud’s. (so far)

    5. I struggle with fatigue a lot. I’ve had to miss work because of it. Sometimes the fog is so severe that I don’t feel quite awake or aware. For some reason, it always seems to lift at the same time of day. I have days where I can and do sleep for 12-20 hours. Afterwards, I usually still feel tired. Some days, I have trouble remembering words and finishing my sentences, as well as keeping focus.

    6. So much pain. The pain is constant. All the joints hurt to the point I was convinced I had arthritis. I have trouble sitting, standing, or lying down for long periods. Some days, I can’t lift my arms above shoulder level. My boyfriend has had to help me with bras, because sometimes I just can’t do it. I have to crawl out of the bathtub. I struggle to walk short distances sometimes. Pressure on my skin can cause a great deal of pain. The feeling of the ceiling fan blowing air on my skin is the worst, like little shocks or pinches all over.

    7. I have interrupted sleep every night, sometimes over ten times that I can remember. I could sleep pretty much all the time. Not sure that I’d feel rested, see fatigue. Part of the problem is that I’m a side sleeper, and either my hips or my shoulders end up feeling like the joint is being stabbed repeatedly. I’m trying to learn to sleep on my back, but I’m pretty sure that would just lead to a new problem.

    What else? Depression related to illness, linked low libido, extremities falling asleep, sensitivity to light, very dry skin, occasional migraines. I’m sure there is more, but I don’t want to think about it too much.

    I’m on an anti-imflammatory, which is doing some good.

    I’m constantly frustrated because of this, PCOS, and IBD, I struggle greatly with weight issues, and most doctors try to tell me all my problems are because of my weight. I’ve been told to exercise more and to sleep more, both of which are pretty much impossible for me at this point. I’d like someone to address my health issues so that I could be healthier overall. Going for a walk is not going to cure this.

    I’m having a flare right now. I always wonder if it gets worse during certain types of weather. Wishing you the best, and a respite from pain. Thanks for your blog, I really enjoy it.

    May 26, 2016
    |Reply
    • Fem
      Fem

      That popping of joints sounds a bit like Ehlers-Danlos syndrome to me. Was that taken into consideration when you got your diagnosis?

      May 27, 2016
      |Reply
      • Ashbet
        Ashbet

        I have EDS, and was wondering the same thing.

        June 7, 2016
        |Reply
  5. Saranna DeWylde
    Saranna DeWylde

    I can never tell if it’s a Fibro or a Hashi’s flare. They feel the same to me.

    I used to get the swelling in my hands and feet, but now it’s just pain. Pain in all of my joints. Mostly the top of my feet and from my shoulders all the way down to my fingertips. My fingertips and toes feel like they’re being held in a fire.

    And I really just want to sleep. I’m so sleepy and I have the brain fog too, lack of concentration. It makes me feel stupid. And out of all of that, for me, the feeling stupid is the worst symptom. I can get past the rest of them, but not that.

    May 26, 2016
    |Reply
  6. I usually get so tired I can’t get out of bed. I mean, I can go take a shower and have breakfast, but I’ll have to lie in bed for the rest of the day and work from there.

    My body will feel as heavy as a ton of bricks. I also get excessively stiff and sore, as if someone’s been beating me with a stick and I’m bruised all over. All I can do is lie there and try to concentrate hard enough to get my work done (I’m a copywriter). If I walk up and down the stairs, I’ll pant and feel dizzy like an old lady, even though on ‘good’ days I’m in pretty average shape. It’s just like every last drop of energy has been wrung from my body.

    My knees get stiff and feel cold, and then at night they become hot and swollen. Also my wrists and hands hurt and prick, especially if I’ve been drinking alcohol the night before. My SI-joints and shoulders also hurt the whole time.

    I’ll sleep fitfully and usually not enough. This often leaves me feeling unstable and very emotional, or just bland. It’s hard not to feel sorry for myself or like a victim.

    Like you, I still wonder from time to time if these symptoms spring from something mental that translates on a physical level. I was also diagnosed with an anxiety disorder and I *have* noticed a direct correlation between being in a good place mentally and having more energy/being able to relax my body better, etc. They say there is this thing called tissue memory, and that letting go of old pain is possible on either level and will benefit you on both levels.

    Either way, no matter the correlation, this is a very real condition and in no way, shape or form our fault (even if people associate mental conditions with ‘having a weak mind’, which I find extremely insulting). Personally, I know that things tend to ‘hit me pretty hard’, both physically and mentally, and that it takes a lot of self care for me to keep balanced in this world. But the fact that I’m sensitive didn’t *cause* me to get Fibromyalgia, nor does it mean I’m not strong, or that if only I had the right mindset I would stop having flares. As a matter of fact I sometimes get a flare even when I feel excellent and totally balanced.

    I’ve concluded that this is just something I have no control over. I can manage it, but I can’t ‘do more yoga’ or find the magic bullet that’ll just ‘snap!’ cure this condition. That’s not up to me. And believe me, I’ve tried a LOT, from sugar free paleo diet to a three-year spiritual training.
    This is just the hand I was dealt. Sometimes it sucks, but a lot of the times I’m thankful for the opportunity it’s given me to do a lot of soul searching and get to know myself. I love that Socrates quote: ‘A life unexamined is not worth living’. I feel like being ill gives me a lot of opportunities – and even causes a need – for examination. And that’s where I find a sense of value, of a life well-lived, even if the Fibro prevents me from leading an active and/or exciting life in many other ways.

    May 26, 2016
    |Reply
    • -> *(even if it HAD a mental cause, and people associate mental conditions with ‘having a weak mind’ […])

      May 26, 2016
      |Reply
  7. Heather (@TorrinPaige)
    Heather (@TorrinPaige)

    I don’t have fibro – but I do have a condition that offers chronic pain: endometriosis. It’s also one of those invisible diseases that people think is either all in your head, or once you get a doctor to confirm your diagnosis and people actually believe that you have it – they don’t really understand the toll that constant pain takes on a body.

    I live with what I call my usual level of crappiness. I hurt all day every day – that’s a given. Think really bad menstrual cramps with the bloating and backache and all the fun stuff that comes with them. Only it’s every day of your life. Okay, fine. That sucks, but I can function. Then I have the awesome stuff that comes the week before and during my period. Ramp all the usual crappiness up to 11. I’ve never given birth (endo made me infertile), so I don’t know what labor feels like, but some of the gals I’ve talked to who have endo but have managed to have a child said that labor pains weren’t as bad as full on endo pain. Because labor pains end. Apparently bad endo pains are like labor…so I go through labor at least once a month. Awesome. On top of all of this, the only things to treat the pain are narcotics – which I love – so I don’t take them. I couldn’t figure out whether I liked my painkillers because they made the pain go away or if I just liked them because they made me happy and energetic. Thus my fear of becoming an addict means I just “muscle though” my pain as best I can. Granted, that means my quality of life is pretty much shit sometimes, but hey, what can you do?

    Basically, even though our pain stems from different places, I feel you on this. I hate it and I hate that you have to deal with this horseshit. I know what it’s like to suffer through the brain fog (I’ve got that, too), I know what it’s like to feel like maybe you’re crazy because people don’t want to believe that you’re actually sick with something they can’t see, and I know what it’s like to feel like your body has betrayed you.

    I can’t even imagine how you find the time to be a wife and mom and keep up with your writing and your busy schedule. You are one of my heroes, Jenny, and I just want to say thank you for showing me that even though life straight up sucks sometimes, it doesn’t mean we have to give up on ourselves and our dreams. You’re fucking awesome.

    May 26, 2016
    |Reply
  8. Bon
    Bon

    I’ve only just gotten my diagnosis, but I’ve had the symptoms for a long, long time.

    I have IBS co-morbid with fibro and get migraine intensity headaches without the migraine side effects. My IBS is managed mainly through diet and a wonderful little OTC pill called Nexium (esomeprazole).

    My flares come in one of two varieties. The first is the headache types (about once per month) – they will start somewhere during the day, and just grow and grow until it feels like someone has dug an icepick through my brain. I’ll lose feeling in one or both hands, and get tingling in my feet. I’ll end up needing to lie down in a dark, quiet room and try to sleep. It won’t be restful sleep but my headache will have faded back down to about a 3 or 4 on my pain scale which means that I can actually get things done… Until it starts to creep back up again. These flares end up with me foggy, confused, struggling to do the simplest task.

    The second type is more common – probably stealing about 2-3 days per week, but I’m hoping that now I’m actually on a treatment plan these will start to fade. It’ll start in my lower back with pain shooting up and down my spine. I won’t be able to bear people even coming close to my back and I’ll flinch when they even touch me. I can just about stand having pajamas on or bedsheets over me. This will spread out. I’ll lose all strength in my core, as if my ribcage isn’t strong enough to support my upper body. I’ll need to move to somewhere supported, like bed or our couch. Walking is hard, not because of my legs, but because it is just so hard to stay upright and keep myself upright. I’ll get a stitch in my side or pains in my pectorals, under all the fat of my breasts which feels really weird. If I want to get out of bed or need to go to the bathroom or anything, I can’t get my feet to move properly, they’ve seized up like the muscles aren’t long enough for them to bend, and I’ll end up with cramps in the muscles of my legs. If I sleep, again, it’s not worthwhile sleep. I may as well have not gone to bed at all. Like with the headaches, it’ll ease in the morning (all except the feeling that my muscles aren’t long enough – I have to go down the stairs sideways to cater for that) but then it’ll ramp up during the day until it’s the same if not worse than the previous day. After a couple of days, it’ll start to ease.

    The doctor has put me on 30mg of Amitriptyline nightly to help with the sleeping and the general feeling of pain. It’s an off-label anti-depressant as well so that is supposed to help. For the pain, ibuprofen and paracetamol do absolutely nothing, so I take OTC ibuprofen and codeine (2 x 200mg/12.8mg) tablets or cocodamol tablets (2 x 200mg/8mg). I have some regular codeine tablets (30mg) for when it’s really bad. For the headaches, I used to take Difene (diclofenac) tablets and I’ve been on 250mg all the way up to 1500mgs. Back when I was 15, the pain in my head was so bad that they hooked me up to a morphine drip and damned if that wasn’t the hardest habit in the world to kick. The fact that I got dependent on morphine makes me hate taking the codeine but I just don’t know what else to do. It’s the only thing working at the moment to keep me upright and moving some days.

    May 26, 2016
    |Reply
  9. Kayla
    Kayla

    I’ve been diagnosed with fibro in the past, but at this point I’m certain it was a misdiagnosis, and the symptoms were/are caused by the combination of Lyme disease, babesiosis, and bartonella I’ve been fighting for the past six years (plus hypothyroid, anemia, Epstein-Barr, major depressive disorder, clinical anxiety, and (as a result of same) insomnia, because fuck me).

    On a normal, regular day, I’m at about a 5 on the pain scale. All arthralgia at this point (since getting the babesia and bartonella eradicated from my system, essentially), though at the beginning it was muscular pain, too, as well as fibro-style tender points (hence the misdiagnosis). I describe my state of being as feeling like it’s constantly 2 AM the night after I’ve run a marathon and gotten hit by a bus. I’m in pain, I’m exhausted, and my brain just doesn’t process information; it’s like trying to think through wet sand. I can’t even sit up straight all day, and while I can run errands, cook, clean, etc., I can do one of those activities a day. Grocery shop and cook dinner? Nah, son.

    On bad days – caused by overexertion, cold and wet weather, or just because fuck me – I’m at an 8 pain-wise, and I can’t leave the house. I can barely leave my bed, and while I can physically care for myself (I’ve lived alone for the past three years), it’s absolute baseline “physically put food into my mouth”-level.

    On good days I’m at a 3 or so, and can do two activities instead of just one. I’ll usually try to do at least one “fun” thing on those days, just to keep my life from being an endless pit of suck. I try to stockpile spoons before fun planned things so I feel good enough to enjoy them (and plan for a couple days of laid-out recovery time afterward).

    In short, tick-borne illnesses will destroy your fucking life.

    May 26, 2016
    |Reply
  10. Victoriana
    Victoriana

    I don’t have fibromyalgia but I have some similar symptoms with my chronic migraine – pain (albeit not widespread, mostly localized to my head.), fatigue, memory, concentration, and sleep issues. I also have nausea, light and sound sensitivity (common to migraines).
    I don’t mean to distract from the topic of fibromyalgia, but the reason I’m commenting is because I’ve been considering medical marijuana for my migraine pain. I have migraines nearly every day, and I badly need something for the pain, which gets quite severe during attacks, and I haven’t been able to find anything else that works that I can use as often as I need to. I know not all pain is the same and the sharp, throbbing headache pain I experience in migraine attacks is different from the burning pain you describe. Still, I have a couple questions. How frequently are you able to use the marijuana to treat the pain symptoms? Do you use it every day, or only during a flare? What method and strain do you use/which is most effective for the pain? Does it also help with the fatigue, memory, sleep, and concentration issues? Thanks a lot for sharing!

    May 26, 2016
    |Reply
  11. anon
    anon

    My mom has fibromyalgia and thinks I *might* have it too, and my PCP agrees it’s a possibility. My medical history is such a mess that I’m not sure it’s worth trying to find out, though.

    I smoke weed because it’s what works for the chronic pain. I have not reacted well to opiates/opoids in the past (hangover-type feeling with headache and nausea from codeine, tramadol makes me itch, flexeril gives me tics) and both my family and me personally have addiction issues. (I seriously wanted to scream at my mom when she told me “you could learn to tolerate opiates” that “you KNOW i have addiction issues, you KNOW i haven’t reacted well to them in the past, why the fuck should I have to ‘learn to tolerate’ shitty side effects just because you think weed is worse?)

    @Regina Chapman:

    But the fact that I’m sensitive didn’t *cause* me to get Fibromyalgia, nor does it mean I’m not strong, or that if only I had the right mindset I would stop having flares. As a matter of fact I sometimes get a flare even when I feel excellent and totally balanced.

    I have stress-related tremors, so I could relate to this. (I have had times when I did everything wrong and was fine, and times when they came out of nowhere and sidelined me for two days where I couldn’t get out of bed without starting to shake again. And the stress-linked portion *definitely* made me feel like I wasn’t strong enough.)

    May 26, 2016
    |Reply
  12. falalala
    falalala

    Incidentally, Jenny, thank you for starting this discussion. I don’t have any “real life” friends or family members with fibro or comparable chronic illnesses, and so I spend a lot of time feeling like I’m failing at life because I can’t just will away the pain, fatigue, and depression and do the same things all the healthy people I know can do. While I obviously wish that you and the other people who’ve commented here didn’t have to deal with this shit, seeing my own struggles reflected in other people’s words helps to remind me that I’m not actually alone in this and that being sick isn’t a moral failing on my part (or anyone else’s).

    May 26, 2016
    |Reply
  13. Crystal Weinmann
    Crystal Weinmann

    I think I got my diagnosis earlier than most. By that I mean that I had pain, and joint swelling and I went to the doctor. After they determined that I didn’t have arthritis I was sent to a doctor that diagnosed me with fibromyalgia. He was surprised that I had only been having symptoms for about 6 months, like normally people suffer for a long time before they come in. I feel really lucky that I didn’t, but then again, it’s harder now. In the beginning I had constant pain, but it was low level. Now I’m always in pain if I’m not on my meds and it’s at 6 or 7 until the meds kick in. I’m really grateful that I already have pain management in place and I can’t even imagain how it must be for people who suffer for months or years with no relief. As for symptoms I don’t have the fever thing and I don’t have joint swelling anymore. Back in the beginning I had a job where I was always on my feet and at the end of a shift my knees would be twice their normal size. Now I don’t have to stand. I have pain in most of my joints, the ones that surprised me were my elbows and all the joints of my hands. I know a flare is going to be bad if my elbows start to hurt. I have severe muscle spasms in my back, sometimes so bad that all I can do is lay down and try not to scream. Sometimes they’re so sudden that I don’t have time to try and I scare my children. I get the severe fatigue, which is only exacerbated by my pain meds. The symptom that troubles me most is the constant fogginess and distraction. I had to leave college because most days I couldn’t finish a sentence and would “lose words” where suddenly the names for things would just be gone from my memory. They actually put me through a CAT scan to make sure I didn’t have a brain tumor it was so bad. Sometimes I get this feeling of unreality, where it almost feels like I’m dreaming or that reality just isn’t. I remember once sending my husband a text from work asking him “Am I here?” It’s better now, except for the pain which only seems to get worse, or maybe it’s just my tolerance to the pain meds that goes up. I’m constantly trying to walk the line between ‘medicated enough to function without pain’ and ‘so medicated I can’t function as a person, but feeling no pain’. I’m afraid there will come a day when I’ll have to choose between being in severe pain all the time and being so stoned I can’t function.

    May 26, 2016
    |Reply
  14. Abbey
    Abbey

    AUGH I have too much braincloud to leave a smart comment, but somehow you posted this on a day that I’m in the middle of a fibro flare too. Fun club activities woohoo.

    May 26, 2016
    |Reply
  15. Ange
    Ange

    No fibro but I was diagnosed with an auto immune arthritis earlier this year after years of pain, swelling, inflammation and just general body bullshit (under control now but I’ll be on medication for the rest of my life). So really just chiming in to say I feel you and hope the episode passes soon.

    May 26, 2016
    |Reply
  16. Xebi
    Xebi

    It just fucks me off that people don’t listen to or believe you about what is happening IN YOUR OWN BODY. A close friend of mine has had severe endometriosis for something like 14 years and people question why he (he’s non binary but prefers male pronouns) doesn’t work, like he’s lazy or something. You could absolutely not deal with that level of constant pain and be lazy. I think maybe THEY are lazy, wish they didn’t have to work and resent my friend because they don’t understand what he has to go through every day.

    May 27, 2016
    |Reply
  17. Jemmy
    Jemmy

    I have SLE Lupus and Hashimoto’s disease, the the fatigue aspect sounds very much the same for me. On a good day it feels like my muscles are tired from a workout the day before. On bad days I’m not sure my legs will hold me, and on really bad days I can’t get out of bed. I’m in the early stages, with mild symptoms so the specialist tells me.

    I dread the future. I haven’t had a good day in 2 years and I feel like i’m missing out on family stuff because I’m always going to be crappy. On top of that, I’m supposed to avoid UV at all costs, which makes family stuff even more problematic.

    May 27, 2016
    |Reply
  18. MaryK
    MaryK

    I have fibromyalgia in conjunction with psoriatic arthritis, and it’s hard for me to know which to attribute my symptoms to. I don’t have as bad a case as others which is fortunate for me but that has its own problems. At first, even I tended to blame my tiredness and lack of interest on laziness or it being “all in my head.” I had arthritis to attribute the pain and swelling to. Then I got to the point where I couldn’t read, and I knew something was wrong because I could always read. I spent my childhood reading. Reading was effortless, and I could do it indefinitely. But my ability to concentrate was completely broken, and it scared me. It was a very particular feeling. When I tried to read or think about something, it felt as if I were using a microscope to focus my brain on the words or problem and having to hold the focus knob in position so it would stay; but the tension in the knob would quickly become too great for me to hold, and it would spin out of focus. It was awful, but it did convince me that I had a legitimate problem. I think sometimes problems come on so gradually that it takes a while to realize they’re there. I take Vyvanse now which helps a lot, but my ability to concentrate isn’t at all what it used to be. I get by at work and am way behind on my TBR.

    I take ibuprofen for aches and pains. It sometimes helps. Generally, I find heat helps more than meds, but I tend to have spots of pain rather than generalized pain. Viox was great stuff. After it was pulled, I took Celebrex for a while; but it was so ineffective I couldn’t tell I was taking anything so I stopped bothering.

    I rarely have trouble sleeping; I mostly feel like I could sleep forever. What I have trouble with is waking up. Sleep rarely refreshes me. My energy stores are practically nonexistent so I have to rest after doing the slightest activity. Of course I’ve gained a good bit of weight, and you can see how these vague symptoms would appear to others as laziness and a need for discipline and exercise. Outsiders rarely understand invisible illnesses. They have no point of reference for comparison and, apparently, no imagination. My sister is a nurse, and she thinks I should just get up and do something.

    I’m single and live alone so it’s just me taking care of me and household chores and problems. Needless to say, my indifferent housekeeping skills have degenerated alarmingly. The dust and clutter are enough to even get on my nerves. There’s just never enough time or energy so the best I can do is triage. If I didn’t have my faith and the moral support of a few friends, I honestly don’t know how I’d survive the work of living.

    May 27, 2016
    |Reply
  19. Kristen
    Kristen

    Thank you for sharing this – a lot of it felt very familiar. I was diagnosed at 15. I was a runner at the time and had been experiencing a series of extremely painful injuries that then could not be tracked to a source. I’m tall and was a very very thin teenager, so they also looked into the possibility of Marfan’s before settling on fibromyalgia caused by a form of Marfan’s called Marfanoid Hypermobility Syndrome. I was rediagnosed in the last few years with Ehlers-Danlos Syndrome, of the hypermobility type. In my case, my connective tissue is very loose and so I’m constantly hyperextending my joints, especially the knees and elbows, and causing small injuries to my frame that add up over time.

    Here are my symptoms, which overlap with yours in many places:

    1. I have constant low level pain in my back, shoulders, and neck, with less noticeable but still frequent pain in my hips and legs. The low level stuff is very much my normal, so I tend not to notice it until attention is called to it, like someone touches it, or pain elsewhere in my body is relieved, allowing me to notice the background noise.

    2. Raynaud’s Phenomenon – primarily in the feet, sometimes the fingers. When my toes turn blue and purple and numb, the only thing I’ve found that helps is taking a very hot bath. They turn white, then red, and finally heat up then. Socks and blankets do nothing.

    3. Fatigue – This can get really bad, but it’s inconsistent for me, and while it always happens during flare ups, it can also happen when I otherwise feel pretty good. It’s intense and very body-rooted. Sitting up or keeping my eyes open can be difficult during an actual flare up. If it happens when I’m not otherwise flaring, I tend to feel very confused by it and to think that I’m lazy.

    4. Foggy head – I don’t know if that’s the right term, but it can feel very literal, like my head is actually engulfed in fog. During a flare up, I have trouble thinking in ways that feel clear. I am not sure I’m actually unclear during that time, because other people do not seem to have trouble following my thought processes, but I personally feel confused constantly during a flare up.

    5. Unusual pain – The low level normal stuff gets pushed out during a flare up because I have pain I can no longer ignore, stuff that has the brain shouting at me constantly. It’s hard to focus or do anything, because the pain is so loud. Because I have Ehler’s Danlos, this can also be due to a dislocation. I had a period where my ribs kept popping partially out of the…sheaths?…whatever holds the ribs in place at the back. Because the heart and lungs are endangered by ribs that could poke them, the brain doesn’t shut up when it senses ribs out of place, even if, as in my case, they aren’t fully dislocated. Also, if something is partially dislocated, my muscles spasm around it to keep it from moving further, and those muscle spasms tend to be very painful.

    6. Insomnia – this is fairly constant, but worse during a flare up.

    I’m sorry anyone has these problems, but it feels weirdly soothing to read about them as a shared experience. It can be very isolating – when I got that diagnosis at 15, my mom very sweetly gave me a book about fibromyalgia, but it was clearly written for people closer to retirement age. It was so discouraging to read about all the things I’d have to tell people I couldn’t do when in many cases, I’d never done them to begin with. I didn’t know anyone my age with similar issues, so I tossed the book out and basically avoided fibromyalgia literature for another 15 years.

    May 27, 2016
    |Reply
    • Crystal
      Crystal

      I have some form of hypermobility syndrome also, although my doctor never diagnosed a specific type. I’ve been hyperextension my knees for as long as I can remember any time I walk or stand. I didn’t realize it wasn’t normal until someone pointed it out in my teens. Now it’s gotten so bad that my knees try to go backwards sometimes. It’s painful and slightly distressing.

      May 28, 2016
      |Reply
  20. Fem
    Fem

    I have raynauds due to ehlers-danlos syndrome, and I do take medication for that. For me, the raynauds was triggered by lower temperatures than 22 degrees Celsius, draft, drinks, all most anything basically. Didn’t matter as much when it was just my lower legs, but in my hands it became bothersome, because I couldn’t use my hands most of the time. The drug I take is called nifedipine in Dutch, it’s some sort of heart medication, that keeps the blood vessels open (they restrict with raynauds), and I take a low dosage.

    May 27, 2016
    |Reply
  21. Morag
    Morag

    I have a benign tumour under my knee caused by tissue damage after a cycling accident years before. The medical attention I got and the general sympathy I receive now are so much better than the preceding years before the lump became visible to the naked eye, despite my pain and stiffness actually being reduced. I must have missed out on a lot of treatment due to not being examined properly no doubt due to this perception that women are hypochondriacs.

    May 28, 2016
    |Reply
  22. In 2010 I was told I had Lupus. It turned out I actually had Fibro. In 2014 I was finally told I had Fibro and not Lupus. I sometimes wonder which one sucks more.

    I can usually tell when I am about to have a flare up because I cannot stay awake. I will be sitting at my desk at work and my eyes will close on their own. I usually have to call my husband or a family member to come get me from work. I will go home and sleep for 12-20 hours. I hate it. I have things that I want to do and I won’t be able to do them because I will be passed out on my bed. Many of my craft projects as well as my house will go undone because I can’t stay awake to do them.

    I noticed that I forget stuff allot more. It really sucks because I can remember something I read or a whole conversation with someone, but I can’t remember why I walked into kitchen or what I was supposed to buy at the store. I have to make lists for everything when before I could remember without a list.

    I have the pain that comes with Fibro. My husband doesn’t understand why I tell him something hurts when he really hasn’t hurt me that bad. Like playing slug bug and stuff like that. He barely touches me on a flare up day and it hurts. It sucks when I try to play with my kids and they don’t understand that I hurt because of my Fibro.

    I am pretty sure that I have IBS. I have to get it confirmed by doctor, but I am about 99% sure that I have it. It sucks after certain foods when I get it. It makes it hard to lose weight when there are certain foods that can trigger your IBS. I hate it.

    On top of having trouble sleeping because of Fibro I also have sleep apnea and a pinched nerve. So I have to sleep with a breathing machine that if it moves a little I will wake up. Because of my pinched nerve I have to sleep with a wrist brace or I will bend my wrist and lose feeling in my hand. I believe the Fibro makes it works because the normal tingle feels ten times worse to me.
    I take Cymbalta for my Fibro. Right now it seems to be working. I learned a valuable lesson about not keeping my prescription up with it. I was in pain for 2 days because I forgot to pick up my meds. I had to get FMLA at my work in order to keep my job because when a flare up hits I can be out for up to three days. Once our 40 hours of sick time is up that is it. We can be wrote up and fired. I had to get it to cover myself.

    I think the worst part about having Fibro is that my younger children have missed out on allot of stuff that my older children got from me. My two oldest are 22 and 21. I was able to do more with them. My younger 3 are 11, 9, and 7. They have had to learn that when mommy has a flare up they have to leave her alone. They don’t wake me up in the morning because they know I need the sleep. I miss out on baseball games and football games because I can’t get out of bed.

    When people complain and say Fibro isn’t real it really pisses me off. I wouldn’t wish this on anyone. I would rather be able to get 8 hours of sleep and then enjoy life. Fibro sucks!

    June 3, 2016
    |Reply
  23. Jen
    Jen

    My skin feels uber sensitive, the feel of a soft breeze irritates it. Pain in my arms, feet, hands, back, neck and wrists. Sharp stabbing pains in my head, usually on just one side. Feeling like I’m wading through mud as I try to function normally. Fatigue, brain fog.

    June 6, 2016
    |Reply
  24. My husband of 8 years has fibro, and I have Raynaud’s, erythromelalgia, and cerebral palsy. Both of us have severe pain and get tired easily, but we do pretty well.

    I also have severe chronic migraines that are medication-resistant, but have been responding to Botox and sodium valproate for the past few years. The Botox (every 12 weeks) has particularly been an improvement in my quality of life. The reason the migraines are so severe is due to brain damage I suffered at birth from being a 28-week preemie. I have also hydrocephalus, and we believe that the scarring and neurosurgeries to deal with that, may have contributed to the migraines. They’re not triggered by anything in particular (sych as cheese or chocolate), except for changes in barometric pressure.

    An erythromelalgia flare feels like my legs, feet, and sometimes my face and ears are being scalded. As far as I know, there is no treatment, and triggers cannot be predicted.

    My husband describes his fibro flares as being like the flu, but lasting for weeks on end. I wish I could help him when he’s in pain or hypersensitive, but sometimes he’s in too much pain for me to even hold him.

    I think we do very well together being able to understand each other’s pain. I’m a very lucky wife.

    June 7, 2016
    |Reply
  25. Ashbet
    Ashbet

    I have Ehlers-Danlos, fibro, Hashimoto’s, and trigeminal neuralgia, and WOW did this article need to be written, because it’s so hard to get people to listen when I describe a flare state.

    I will say that I found an unexpected bonus when my blood pressure got high — I’m taking a medication called Guanfacine, and as a “side effect,” I found that it had a hugely helpful effect on my Raynaud’s — I very rarely have Raynaud’s symptoms now, and I used to have attacks multiple times per day.

    Might be worth checking out whether a low dose might help you similarly!

    June 7, 2016
    |Reply
  26. Anon123
    Anon123

    Not fibromyalgia, but near-daily migraines with a bunch of atypical features, a lot of them full-body stuff. I hear you on the “random people who think you should do more yoga” thing. Also on it taking 90 minutes for 536 words, when you can even get out of bed at all.

    It’s really frustrating, because I haven’t been able to get disability yet (again like you, people don’t think this is “real”), so I keep struggling to stay afloat. I’m really amazed at how much work you produce with the level of debilitation you experience. You inspire/intimidate me, lol.

    June 27, 2016
    |Reply

Leave a Reply to Kayla Cancel reply

Your email address will not be published. Required fields are marked *