GLBT & FMS/CFS
A dedicated group for GBLT (gay, bisexual, lesbian, or transgendered) sufferers of fibromyalgia or chronic fatigue syndrome.See More
A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain
Hans Miniar Jónsson's Groups
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The Healing point
5 members
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GLBT & FMS/CFS
25 members
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Fibro Youth
6 members
Hans Miniar Jónsson's Discussions
Muscle Twitches
6 Replies
Muscle twitches are apparently rather common in us Fibro folk and I've been dealing with a brand new one in the last couple of days. The spot where the upper arm meets the shoulder, a place where…Continue
Started this discussion. Last reply by Reverend Kurt fondriest Nov 6, 2011.
Happy Holidays
1 Reply
Have a happy midwinter festival of your choosing, whether it's started or finished by now. And a happy new year too, if I don't catch you by then. Thanks for the old one. Remember to pace yourselves…Continue
Started this discussion. Last reply by Rick Dec 29, 2010.
The man who encourages the sick and dying to drink industrial bleach
2 Replies
One of the MANY MANY MANY MANY MANY miracle cures I've been linked since being diagnosed with Fibromyalgia is the "miracle mineral solution". I took a…Continue
Tags: Mineral, Solution, MMS, Miracle, Warning
Started this discussion. Last reply by Hans Miniar Jónsson Oct 24, 2010.
What's on your mind?
6 Replies
Like the topic says. Every forum needs a thread where the point is none really. Where you can make a short comment. Too short for blog, too long for status. Wanna complain 'bout something? Or mention…Continue
Started this discussion. Last reply by Hans Miniar Jónsson Aug 24, 2010.
Gifts Received
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Hans Miniar Jónsson's Page
Profile Information
- About me:
- Oh geez, where to start.
Well, I'm an artist, a parent, a partner, an intellectual, a student, a diligent worker, a nice enough guy, and someone who, unfortunately, can't get a full day's work done in a week because he's constantly exhausted and in pain.
My Fibromyalgia is aggravated, if not caused, by my hyperextensive joints. What that means is I can bend further than is "good" for my joints. I can pull my fingers backwards until they are "parallel" with my arm. I can fold my legs up in a lotus position, and then lay down with my abdomen on my ankles and my chest on the floor. I can lick my elbow (no, that's a lie, but the first two aren't).
What this means is that my spine is like beads on a string, constantly moving in and out of alignment. Which means sometimes the vertebrae get a little stuck in the "wrong" position and I have to twist my torso around (or grab my head by the jaw) and push until an unpleasant, and loud, cracking noise is heard, just to get some of the mounting pressure off (though usually that corrects the alignment problem completely, if temporarily).
This problem isn't just in my spine ofcourse, but everywhere, so whenever I walk up stairs my knees make loud, wet, crunching noises. Whenever I walk, period, my feet pop in and out alignment. And other bits and pieces click and pop at random throughout the day. (Took my partner a while to get used to that as we roughhouse a little bit and due to my "unusual" flexibility I could twist out of positions that should be "locked", and my body would make noises that would make him worry he was breaking something, so he'd sometimes accuse me of not playing fair.)
I have a lot of hobbies and things I enjoy, but I don't have "favorites" so I won't be filling out the boxes below.
A quick list (nowhere near a complete one) of my "likes" is;
philosophy
politics
religion/spirituality
history
science
playing the guitar
drawing/painting
movies (reviewing/discussing 'em after too)
fine wine (and reviewing/discussing them)
cooking and eating great food
pets
computer games and tabletop (pen and paper) role playing games
"taking stuff apart to see how it works"
etc.. etc.. etc..
(yep, I'm a bit of a geek..)
- Relationship status?
- Married
- Do you have fibromyalgia? If so, for how long?
- Diagnosed the summer of 2008 but have felt symptoms since well before 2000. Was just too damned stubborn and proud to seek help 'till my partner more and less sent me to the doc with my tail between my legs.
- What is your current treatment protocol? Supplements?
- Eat right and Exercise, the occasional painkiller, weekly sessions with the physical therapist (weightlifting and a great backrub) and therapy.
I've previously tried; cutting out sugar, cutting out artificial sweeteners, Naproxen, Amilin, Surmontil, Sobril, Lyrica,
without them helping at all.
Hans Miniar Jónsson's Blog
Last weekend I spent camping with the queers!
I was “a leader” from the northern Iceland team of GSSM (gender, sexuality, and sex minority) group and so I was a “responsible adult” this weekend.
The people coming up from south-west Iceland (mostly Reykjavík) were mostly underage with the exception of the two “leaders.”
Day 1.
We left Akureyri in two cars and we headed off late due to people getting together late, and then arrived late to the…
Posted on July 11, 2011 at 3:29pm
Long time no post...
Since last we spoke I've;
Had surgery
Passed exams
Been to therapy
Been to physical therapy
and probably some other things.
As I've mentioned, I'm a trans man, and today I'm bundled up in pillows and blankets in a nest/fort in my bedroom recovering from a transition related surgery. Top surgery to be exact. My chest has been smoothed down, flattened, made more masculine.
I am stunned at how mobile and alert I am. The area must have been stressing…
Posted on May 16, 2011 at 6:03am
Antidepressants...
Oh joy, new meds, new side-effects, new new new..
Over the holidays I got sick with some flu for the first time in years and I was also more skint, further in the red, than I have been in years.
So, everything just sort of caved in for me.
My depression took a dive for the worse and I have been unable to claw my way out of that pit since.
This means I finally swallowed my pride and accepted that I may need antidepressants, at least for a while.
So…
Posted on February 17, 2011 at 1:26pm — 1 Comment
A status update on old Miniar
Quick list of things I'll cover (in no particular order) is;
Surgery, pain, fatigue, therapy, disability, and PUPPY!
This'll be short none the less.
Surgery, pain, fatigue, therapy, disability, and PUPPY!
This'll be short none the less.
First thing first... PUPPY!
We're getting a new puppy this Sunday!
She's 1/4 doberman, 1/4 border collie, and 1/2 german pointer.
She's 1/4 doberman, 1/4 border collie, and 1/2 german pointer.
She's calm, cute as heck, and pretty awesome. (Yes, there will be pictures... eventually.)
Only thing is.. We don't have a name!
I've never…
Continue Posted on November 19, 2010 at 8:46pm
Latest Activity
Jon Powell joined Hans Miniar Jónsson's groupGLBT & FMS/CFS
A dedicated group for GBLT (gay, bisexual, lesbian, or transgendered) sufferers of fibromyalgia or chronic fatigue syndrome.See More
Hans Miniar Jónsson replied to Rick's discussion 6 Strange Signs of Fibromyalgia"Cool link! Thanks."
GLBT & FMS/CFS
A dedicated group for GBLT (gay, bisexual, lesbian, or transgendered) sufferers of fibromyalgia or chronic fatigue syndrome.See More
Reverend Kurt fondriest replied to Hans Miniar Jónsson's discussion Muscle Twitches"yes we twitch hans. I take klonopin for twitching and does help. I also have costochondritis, inflamed rib heads.. ouch, also common w/us..
peace
kurt"
Karl Wegener replied to Hans Miniar Jónsson's discussion Muscle Twitches"Oh I said I had years of medications... since I was very young... I'm 47 now and recently had to remove my teeth because they were chipping and cracking... some due to clinching and stressful lifestyle... SIngle dad and son on... But now the…"
Karl Wegener replied to Hans Miniar Jónsson's discussion Muscle Twitches"Yes, this is the best non-medicated way.... These are nice.. Traction also helps if you can get it...
I have had the internal neck stimulator temporary implants along the spine in the cervical and upper back area... (twice) and had problems with it…"
Karl Wegener replied to Hans Miniar Jónsson's discussion Muscle Twitches"diazepam or Valium, is used for twitches as you put it... I had that on both shoulders earlier last year... I worked a very repetitive job. I'm on disability now...
Mine twitching is inside my elbows... very strange.. something…"
Hans Miniar Jónsson replied to Keith Cohen's discussion Is there a real solution for an inactive libido?"Quick question, if you don't mind, but what form of Testosterone are you taking?"
Kathy Michau replied to Hans Miniar Jónsson's discussion Muscle Twitches"I too have lots of muscle twitches, twinges and knots, some right where you're having yours. They can get pretty painful. I use a TENS unit. There are several places you can buy them online for as little as $59 http://www.lgmedsupply.com/.…"
Hans Miniar Jónsson posted a discussionMuscle Twitches
Muscle twitches are apparently rather common in us Fibro folk and I've been dealing with a brand new one in the last couple of days. The spot where the upper arm meets the shoulder, a place where people often put their easily concealed upper arm tattoos, has been twitching every 2-10 seconds for about 48 hours now and it's starting to get actually quite painful. Anyone got a twitch they're dealing with, have dealt with or somesuch?Any advice on how to get rid of it?It's seriously starting to…See More
Hans Miniar Jónsson replied to Bill Cohen's discussion re: problems with intimacy/sexuality with fibromyalgia & Lyrica/drugs?"It's hard to be "passionate" when you're falling-down-tired."
Hans Miniar Jónsson replied to Bill Cohen's discussion "What was the worst scam....""... Someone just tried to convince me that Fibromyalgia is one of the "modern diseases" caused by eating meat!...
I was apparently supposed to go on some special diet for 30 days (with 300 dollars worth of supplements) to clear my…"
Hans Miniar Jónsson posted a blog postLast weekend I spent camping with the queers!
I was “a leader” from the northern Iceland team of GSSM (gender, sexuality, and sex minority) group and so I was a “responsible adult” this weekend.The people coming up from south-west Iceland (mostly Reykjavík) were mostly underage with the exception of the two “leaders.” Day 1. We left Akureyri in two cars and we headed off late due to people getting together late, and then arrived late to the camping grounds. I was pleasantly surprised to find that the camping grounds were huge and we…See More
Bill Cohen commented on Hans Miniar Jónsson's group GLBT & FMS/CFS"One married, right-wing columnist wrote an editorial called: "Should gays be allowed to marry? Yes. Let them suffer, too,""
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peace
rev. kut
I was reading your story and it sounds so similar to mine. I too have joint hypermobility and have the poping sounds too. My back is a mess, my knees are pretty bad and of course with the FM, I hurt ALL over!
My symptoms didn't get really bad until the last 10 months or so. Before I would have occassional days where I would hurt but now its everyday.
Anyway, just wanted to say hello to a fellow flexible person!
Dave