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Feed up! I want answers

I am so tired of feeling like total crap and the doctors being fair from helpful. I am currently having fine tremors, night sweats, weakness and increase in my fibro symptoms. All my doctors want to say is "go to the ER/urgent care" but then they all poo poo my symptoms away like its nothing and I'm just an attention seeker. My income, career and home life are severely being effected by this. I don't know what to do or know who will help me. Anyone have suggestions? #Mysteryillness #Fibro #Fibromyaliga #help #Thoughts


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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Best Wishes

Does anyone else get annoyed when people say, “oh, you’re moving better today”? I find it so irritating, when I am struggling against the magnetic field that makes my legs not want to move for whatever reason (somebody diagnose me, please!) and someone says that or, “looks like you’re getting around pretty well today!” I want to say, “Well, sure, I mean, I use a walker at 50, and I have to think about every step to make it happen, and going around the block is a pretty intense challenge, but you’re right, those 15 steps you just saw me take went really well, you’re right.”

#InvisibleIllness #Mobilityissues #Mysteryillness


#ChronicIllness #Mysteryillness Fear of dying?

I generally try to be positive and spread sunshine, but lately the docs have been scratching their heads as I’ve had 3 emergency appointments this week alone. They all point to something scarier than has been suggested before and I’ve been running fevers on top of everything else freaky going on. Every night when it’s time to go to bed, I’m afraid I’ll die because of the emergencies I’ve been having at night, and my looming #Diagnosis. Anyone been there?



This is an easy one for me, since I spend a little time almost every day reading. Or, to be fair, I spend time audiobooking. The Lupus and Fibro hurt my hands and holding a book longer than half an hour hurts. I miss real books (I have 2 bookcases full of volumes), but I've learned to love audiobooks.

Since I've started, though, I've been listening to mostly non-fiction. I spend most of my Audible credits on university classes from The Great Courses. I just finished one called Death, Dying, and the Afterlife. It was morbid, to be sure, but it was also fascinating. And global, which was nice, it didn't focus solely on Western traditions.

Last night I started a new book called What If? Serious Scientific Answers to Absurd Hypothetical Questions by Randall Munroe. And it's exactly what it sounds like. He answers fan's weirdest questions with real math and physics. And, to make it even better, it's read by Start Trek's Wil Wheaton. I'm enjoying it quite a bit so far.

I've also been broadening my horizons reading religious texts. Last year I listened to a gorgeous rendering of the Christian bible, and this year I'm tackling the Hindu Mahabarata. The telling is not as gorgeous as the bible was, but the story is wonderful. Next year, who knows? The Talmud? The Qu'ran? I guess I'll see once I get there.

#Lupus #Fibromyalgia  #MajorDepressiveDisorder  #Mysteryillness

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Any advice for first-time hand tremors #Tremor #Fibromyalgia #Mysteryillness

Over the past couple weeks, I have started having hand tremors on top of all my other symptoms - chronic fatigue, pain, etc. This is the first I have noticed them.

I do a lot of fine motor work with my hands, including painting miniatures. At the moment, I can’t hold the brushes or the miniatures to paint.

I have trained my phone to autocorrect pretty well, so no problems there. And I have a good time laughing at myself trying to use chopsticks to eat pho. I just don’t want to think about having to give up my painting.

Any tips for working with tremors that are aggravated by pinching and fine motions?



It's very hard for me to get cozy, especially these days, but some things help.

-Playing video games online with my gang of friends (an adult beverage also helps)
-Lounging on the couch wrapped in my king-size blanket watching horror movies (or dance shows)
-Snuggling in bed with my kitty listening to an audiobook

#Lupus #Fibromyalgia #MajorDepressiveDisorder #Mysteryillness


Today's Emotion - Hopelessness

Today's main emotion was hopelessness. I've been having, if I may be a bit graphic, infections of some sort that are literally eating my skin away. It's incredibly painful, not to mention messy. I can barely function in my day to day life. I must have gone through, no exaggeration, 15 different doctors, GP's and specialists, before I found one who did more than look baffled and shrug their shoulders at me. Today I had an appointment with him, hoping he'd have answers after the last run of tests, but unfortunately he did not. This has been going on since April, and is literally ruining my life, even more than it was already with the Lupus and Fibro. So I'm feeling very hopeless right now. I'm having a hard time remembering why I want to hold on to this life...

#Lupus #Fibromyalgia #MajorDepressiveDisorder #Mysteryillness


PLEASE HELP - I need to find someone who shares these symptoms!

For years, I have suffered with chronic pain and been diagnosed with fibromyalgia. However, I experience full body spasms that don't fit this! I get this feeling in my chest like I'm about to do a big yawn or maybe sneeze (it feels like a rising maybe? It's hard to describe.) then my whole body will contract and my feet and hands tighten and contort weirdly. I can't breath well when it happens but I am conscious. It's so painful and leaves me exhausted but no Dr is taking me seriously! Has anyone ever had this??? #Fibromyalgia #Dystonia #SeizureDisorder #Pain #Mysteryillness


#braintumors #Meningioma #Mysteryillness

Hey guys I’m worried. A couple months ago, I was washing my face and my fingers ran over a certain part of my forehead, it sent an “electric shock” nerve pain to a random part of my skull. When I touched the part of my skull that it sent pain to, I noticed a lump that had never been there before. Consistent shock when touched & lump is sore. I also began having stabbing headaches that feel like brain freeze, along with a pain that creeps up the base of my skull/back of head. The headaches happen daily now. I have random limpness and weakness in legs and arms, dizziness and mood changes. Scared