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    Community Voices

    Finally Managing my BPD!

    <p>Finally Managing my <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6700553f33fe98e87d" data-name="BPD" title="BPD" target="_blank">BPD</a>!</p>
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    Community Voices

    Tubie or not tubie?

    <p>Tubie or not tubie?</p>
    21 people are talking about this
    Community Voices

    I’ve been MIA for a few days.

    My apologies for the lack of posts recently everyone. On top of all my diagnoses / symptoms flaring up, noe I have yet another infection of oral thrush. It’s a monster. I’m battling the best I can but I feel awful and my lips and inside cheeks are swollen. My lips are also very cracked and painful, like really bad windburn. I’ll try to get a post up soon but until then, remember you guys can post too. And I hope you do. Keep your fingers crossed for me. I’m hoping something starts working soon. #ChronicIllness #candida #ChronicPain #Neuropathy #TheMighty #Disability #Multiplediagnoses #autoimmune #AutoimmuneDisease #alwaysinbed

    4 people are talking about this
    Community Voices

    I realized I hadn’t updated my “medical conditions” list on my medical ID bracelet site in awhile. I realized after looking over my list that most of my conditions are “invisible”, except for my knee problem that I wear a knee brace for and sometimes use a cane. So often, I feel overwhelmed by the number of conditions I live with (Am I a “bad seed”?) and the physical and emotional pain that they cause; even the ones that have been “repaired” have come with lingering pain from scarring, incomplete cure or subsequent Dx. I’m thankful for my caring husband and a few really close friends who understand to a point. But even they get tired of my need to share my emotions about what I’m going through. I’m thankful for this group who gets what I mean and can give support without judgment or weariness.
    I’m no longer able to work fulltime; I used to be an educator in various special education programs as well as in schools.
    I try to help others who have conditions like mine as well, so I’m not just a “taker”.
    Here is my list. Dates indicate either diagnosis date or surgery date.

    Right inner ear imbalance 1998
    Narcolepsy 1999, 2021
    Allergies - plants, animals, foods and meds
    Sliding hiatal hernia 2011
    Sphincter of Oddi dysfunction Type 3 2007 - result of gallbladder removal 2005
    Diabetes Type 2 1996
    GERD 2005
    Mild/moderate disc degeneration neck & low back and mild spinal stenosis
    Slip & fall back injury 10/15- MRI Nov 2017 SI joint injury
    Fibromyalgia - 1995
    Sleep apnea 2019
    History of ruptured ovarian cysts 2006 -
    Recurrent tingling/"electrical shocks" all over body 2007 - diagnosed as Small Fiber Polyneuropathy 2020
    Scoliosis (curved and twisted)
    Right knee cartilage deterioration (injured 1979 & 1986) - diagnosed permanently dislocated kneecap 2019
    Arthritis - neck, hips, knees, hands
    Carpal Tunnel syndrome - 2019
    Bursitis - left hip 2017
    Recurrent "tennis elbow"
    Plantar fasciitis and tendonitis both feet - custom orthotics 1991
    Fatty liver
    Cardiac "regurgitation"
    Major Depression,
    Anxiety, C-PTSD, possible BPD
    Multiple concussions (5)
    Multiple whiplash injuries
    Vaginal Hysterectomy with Rectocele and Cystocele repairs - 2018 - Urinary incontinence
    Frequent Migraines

    #ChronicPain #MentalIllness

    #SexualAbuse #SexualAssault
    #PostconcussionSyndrome #SmallFiberPolyNeuropathy

    8 people are talking about this
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    I think I know why I'm sick today.

    I had written a long post on here about feeling awful. Cold sweating, mild derealization, cloud headed, depressed, achey. I didn't think that my lack of sleep was the problem. I still don't, exactly. But let me explain.

    I have a habit of assuming that my bipolar II depression symptoms are just my baseline, but that is only sometimes true. When things really bother me, there is a difference and I need to get better about recognizing that.

    I couldn't sleep last night and didn't know why. But I realized a minute ago that my lack of sleep came after a day of intense anxiety and ptsd symptoms.. and even after that, I had become depressed about the fact that my dad's birthday was tomorrow, and he's dead, and he never loved me...and all the feelings that went with that had spiraled into a whole self-hating, lonely thing.

    Even when I stopped conciously thinking about it, I think my subconscious held on to it because I definitely had bad dreams in my half sleep. Bad dreams about not being wanted, or conversely about being wanted in a sexual manner, which for awhile was the only thing I felt I was good for.

    So my lack of sleep was started by the depression, etc.

    I think that I carried over into today. I feel physically and mentally awful. But that's what lack of sleep and heavy bad mental health symptoms and taking your meds late because of them does.

    I don't know the mechanics of it, but at least now I know there's probably a reason.

    #MentalHealth #PTSD #selfesteemissues #Bipolar2Disorder #Depression #Mysteryillness #mentalhealthisphysical
    #Insomnia #CPTSD #Multiplediagnoses

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    Community Voices

    Okay, so I had a really crappy day yesterday but and even worse night, meaning a lack of sleep (already a trigger for pain & fatigue & other symptoms) but I don't feel as bad as I did yesterday so far. First day starting CBD oil, as recommended by my best friend with the same issues, it wasn't cheap and I'm pretty poor but hell, at this point, if I works I'm buying again. So far, it's at least helped my anxiety. I can't tell if it's helped my pain but I think it has, as usually I'm in much more pain. My hopes are that it reduces the amount of opiate medication I'm on and reduces my pain level even when reducing opiates. I have college work today (thankfully at home this week) but still, I am concerned on if this will make my pain/fatigue flare worse, because it seems it doesn't always require extra movement to be made worse, sometimes just using my brain makes it worse. Fingers crossed it doesn't. I plan to leave the house today to keep morale up, mostly by wheelchair today as I'm not willing to push it considering how bad things got after a short walk.

    Community Voices

    This is a vent post. I'm having a really tough day, I'm feeling especially grumpy and irritable. I think because I'm in more pain than usual (but not quite as much as a pain flare), partly due to joints subluxing and dislocating more and having a 'busy' week, for me. I'm very fatigued and I am just fed up. My hips, neck and wrists are particularly painful today. I'm easily overstimulated atm (autism) and that's making my mood worse. I want to be doing a diamond painting but so far having been able to get up and move to the room I do it in. Ugh. Screw today. I'm starting a CBD oil (recommended by a friend with weirdly the exact same dxs) on Monday and I hope it helps, on top of my Gabapentin, Tramadol and Paracetamol.

    3 people are talking about this
    Community Voices

    #Multiplediagnoses #ME #HSD #hypermobileehlers-DanlosSyndrome(hEDS)

    I've just been diagnosed with ME on Monday and I also have a diagnosis of hEDS & fibro. I feel like fibro is kind of defunct but I've been told I should still use it, by the dr. I've just had my first very busy week and I'm having a flare and it absolutely sucks. I'm exhausted, my face hurts, I have a horrible headache and I'm in pain and nauseated. The other day I woke up with severe pain in my shoulder as it had fully dislocated (where it normally only partially dislocates). My Dr also half diagnosed me with MCAS. I feel like I'm in a chronic illness version of pokemon 'collect them all'. On top of all this, after having what was likely (because they lost my results) Covid, I've had none stop infections, quite literally not been without an infection for around 3/4 months. I wonder if that is connected to Covid. I'm not doing to bad mentally at least, I just feel a bit miserable. Luckily I have a few great people in my life to cheer me up.

    7 people are talking about this
    Community Voices

    What other tests can a rheumatologist do besides/after blood work to figure out a diagnosis?

    They do the same standard blood work for inflammatory markers. What other tests can they do? #Fibromyaliga #ChronicIllness #Multiplediagnoses

    6 people are talking about this
    Community Voices

    Facebook reminded me a year ago I was (re)diagnosed with #HypothyroidismUnderactiveThyroidDisease

    This is a long one, bear with me.

    I had the #Hypothyroidism Since I was 12, but since I was young, (and I was too) the doctors said by 18 I dodmt need the synthroid anymore. I still got my thyroid checked every year. Three years ago the bloodwork to me looked funny, and to the doctor too. I had way too many thyroid antibodies. At this point, the hormone level was still technically okay, but the doctor sent me to their endocrinologist, who also said, I was okay. The next year goes by, I get my annual bloodwork including the thyroid, i always ask, its it's the way it was. This doctor thought it looked funny too, and the hormone has now started to drop SLIGHTLY below normal range, the antibodies are at 400. You're supposed to have less than 9 on someone healthy, but and i quote this next doctor "I dont tell comfortable giving you synthroid right now," I tell him I'm going to get a second opinion, NOT from his endocrinologist, someone else. It took my endocrinologist not even 2 minutes to diagnose me with hashimoto's hypothyroidism. He said no ones antibodies should be that high, and that they were attacking my thyroid. I get my synthroid. I get bloodwork every three months or so now. I've had the dosage dose bumped twice since. I'm on the same dosdose as I was as a kid by now currently. July 9 i was diagnosed with #Fibromyalgia after years of pain, but not so widespread, not so constant. It got very bad this year, and I got the diagnosis. Its comorbid with hashimoto's. Over a third of people with hashimoto's have it, maybe more, because a lot of people dont know they gave hashimoto's. I find myself, in the middle of a flare, wondering, maybe if the doctors listened, I wouldnt have this #ChronicIllness Maybe if my parents did research when I was younger about #ThyroidDisease They wouldnt have been so quick to put me on #Bipolar medication. I mean, thyroid/pubescent kid, I literally never had a chance to grow my own serotonin. I'm not sure why doctors took me off synthroid in the first place to be honest. Things like hypothyroidism dont just get better typically, and an 18 year old metabolism is more or less trickery. Idk. And I'll never know. Maybe I'm in pain and playing the blame game, however, these are the cards I get to play now, but maybe it didnt have to be. Maybe instead of carrying around a pharmacy, I could have just carried that synthroid. #Advocacy #advocateforyourself sometimes doctors are wrong. Sometimes your parents are wrong. Sometimes, things dont get better. At 29, I'm now a holder of three disabilities. I can't even leave the job I hate, because I need the intermittent fmla. My boss hates me because she diesnt realize I've gotten so sick in three years. I look normal, I laugh, I tease, but somedays inside I'm definitely not okay. I learned to live and adjust. #Vent #rant #Multiplediagnoses