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    #Painsomnia Fibro

    Guys I need suggestions my nightime pain has been absolutely ridiculous lately. What do you do to help? I cannot handle anymore its so hard #Fibromyalgia

    17 reactions 9 comments
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    3AM Heating Pad Date #Painsomnia #Hypermobility #Endometriosis #EhlersDanlosSyndrome #HEDS #Arthritis

    The upside to having painsomnia at 3AM is that you have 8 different heating pad/devices to choose from. The downside is everything else.

    11 reactions 5 comments

    Post surgery struggles

    I had a #venogram on Thursday to address #nutcrackersyndrome and #MayThurnersSyndrome . Compression was found in both my renal and my iliac. My iliac was stented for the third time. This recovery has been brutal. The pain is horrible. I cannot get in a comfortable position. I’m just frustrated. I woke up at 3am in a full #PanicAttack l am grateful my boyfriend was with me and helped me through it. But I haven’t at a decent night of #Sleep in days. I hate #Painsomnia . I Like to have soft blankets and lots of pillows and stuffed animals around me when I feel like this. How do y’all find comfort?

    2 reactions 6 comments
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    What is one thing that you love about summertime?

    ☀️Summertime shady decks/cool nighttimes☀️

    Having fibro can make temperature control an issue. Too hot, too cold, most days I feel like a mixed bag between Princess and the Oea and Goldilocks. Everything ’bothers’ and temperatures need to be ’just right’.

    I have always enjoyed the sun and It’s life giving properties. I have managed to get a little sun on my skin while out, and be out on my shady deck enjoying my flower pots. I have a thick foam cushion loveseat which has made sitting out there enjoyable. This summer there have been some cool rainbows also. Sharing from my deck;)

    Having painsomnia, gets me up at 3 or 4 am. By then the temperature drops and it’s comfortable to be out, so I go sit on the deck to watch the night sky, and hang with the fruit bats that like to do flybys over my head.
    #Fibromyalgia #Painsomnia #Summer #RAINBOWS #Joy #ChronicHeadaches


    Gotta catch ‘em all

    The last few weeks have been particularly hard on me.

    Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

    I’m being referred to cardiology for a tilt table test.

    In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

    I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

    They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

    My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

    It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

    And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

    Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

    I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

    Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

    #ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia

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    So tired, in so much pain #Painsomnia #ChronicPain #ThoracicOutletSyndrome

    Things have been better the last month but this past week has been hell. I haven’t been able to sleep the past three nights because of terrible nerve pain. It doesn’t matter how many pain meds I take or what pain relief methods I use, nothing works. I hate this. I know when you have chronic pain this is just a part of life, but this is just difficult to get through. Especially with no sleep. I feel like the only way I get better is when I can rest and sleep. Just wanted to share because I don’t have many people who understand. 😔


    12:20 am #Painsomnia

    Day 3
    I am so tired and lonely with this constant pain.
    My spouse can sleep thru anything. I am jealous that pain meds work for him and cbd oil works for him
    Nothing reduces my pain except busy/distraction.
    If I could just stay on my feet 24/7.

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    Nights are the worst for your mind #ChronicPain #Painsomnia #Depression

    My nerve pain is so bad tonight after Physical Therapy. I am so busy this week with work and this big of a flare is the last thing I need. It’s one of those nights that I am in so much pain I know I will hardly get any sleep. Nights are always the worst. It’s not like I can talk to anybody because it’s so late. So I’m turning to you because you are the only ones who will understand. I hate this life. I hate chronic pain. It’s been 10 years and I’m still in hell. How do people live like this for the rest of their lives?

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    Insomnia or a lesser-known sleep disorder?

    In Mighty contributor @mary_’s story,, she talks about some sleeping disorders that are lesser known.

    It can be hard to explain to people in our lives the reason we’re not sleeping well, but there’s some validation in knowing this is something most people experience at some point in their lives. And as we learn more about sleep disorders like the ones in this list, the better informed we can be in our own treatment and care when we talk to our doctors.

    Have you been diagnosed with one of these sleeping disorders?

    #Upallnight #Insomnia #Painsomnia #Anxiety #SleepDisorders #Narcolepsy