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Trans Fibro CFS
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Below are the 19 most recent journal entries recorded in trans_fibro_cfs' LiveJournal:

Tuesday, March 6th, 2007
3:11 pm
I'm a 21yr old FTM 3.5 months on T.  I have Systemic Lupus Erythematosus and Raynaud's Syndrome.  I was diagnosed at age 11 with Fibromyalgia and later diagnosed with Lupus around age 13.  I am currently dealing with a terrible mixture of pain induced Insomnia mixed with Cronic Fatigue.  I have not been able to find a group for me and was hoping to find support here or a re-direction for another group that would more suit me.
Sunday, July 23rd, 2006
12:50 am
"Columbia University researchers discover on-off switch for chronic pain"
"It's been known for years that for chronic pain to persist, a master switch must be turned on inside the peripheral neurons, though until now the identity of this switch remained a mystery. Richard Ambron, Ph.D., professor of cell biology, and Ying-Ju Sung, Ph.D., assistant professor, both in the department of Anatomy and Cell Biology, have now discovered that the switch is an enzyme called protein kinase G (PKG)."

-- Columbia University researchers discover on-off switch for chronic pain
Monday, November 7th, 2005
6:46 pm
Hi everyone :D Pointed to this community by a friend. So, the obligatory intro--

My name is Erin. (Chorus of "Hi, Erin!") I'm 20 years old, and I've had Chronic Fatigue Syndrome for the past six years. I'm silly, kinky, polyamourous and pansexual. Phew. After a few years of searching for a suitable label I've settled on "intergendered" to express my simultaneous male/female identity.

I moved here to Melbourne in February this year from Canberra, where I was seeing the CFS specialist Jonathan Turtle, but now I've moved...well, I'm in need of another long-term doctor. Can anyone recommend a good, open-minded doctor here in Melbourne? I don't care whereabouts so long as I can get to them, I'm happy to sit on a train for three hours to get to them (despite what that in itself might do to me, heh.)
Friday, May 20th, 2005
10:48 am
"Fibromyalgia patients may benefit from cough remedy, UF study finds"
"Dextromethorphan, an over-the-counter medication that silences coughs, may help fibromyalgia patients quiet over-reacting nerves that amplify ordinary touches into agony."


[ Cross-posted to chronicfatigue and cfs_fibro_ideal ]
Friday, April 29th, 2005
8:47 pm
does anyone know if there is any correlation between fibromyalgia and type II diabetes? what if you add testosterone into the mix?

Current Mood: cold
Sunday, April 24th, 2005
11:55 am
Hi, I figured this community needs some life....

I recently attended (and spoke at) the TransForming Feminism Conference and met engnyath there.... I find it interesting how many people who are trans dealing with fibro and CFS.

I'm an MTF, identify "Male to Butch", or just "butch". I am very involved in the leather communities and trans-activism within those communities...

I have fibromyalgia and an unspecifiec rheuatoid disorder that my doc thinks is linked to psoriasis.... the symptoms are similar to rheumatoid arthritis...

I am someone who went from being extrmely active and athletic to being someone with a severe disability, however I have managed to still be fairly successful in my chosen field and in my daily and personal life... though its hard sometimes....

I'm hoping more discussion and commuication can happen over here, because I think we have a lot to share with each other....
Thursday, April 14th, 2005
3:48 am
[ Cross-posted to chronicfatigue and malingerers ]

"University of Kentucky physician publishes fibromyalgia study in Arthritis & Rheumatism Journal"

"Pfizer Inc's Lyrica (pregabalin) significantly reduced the pain of fibromyalgia and improved sleep, fatigue and other patient-reported conditions such as bodily pain and vitality, according to a study published in Arthritis & Rheumatism."
Thursday, December 9th, 2004
8:32 am
Sex & Gender Project

Not directly related, but the Department of Experimental Psychology at Cambridge UniverSex & Gender Projectsity is doing a sex and gender project seeking to determine if there are links between cognitive ability and hormones. You can volunteer for this and fill out some questionnaires at their Project Web Page.

Current Mood: relaxed
Wednesday, October 13th, 2004
1:43 pm
I saw my GP last Friday. About the only result I had was being given a Ventilin inhaler to help with the coughing fits. I see my endocrinologis this Friday, and might mention a few things then.

Current Mood: tired
Wednesday, September 22nd, 2004
2:49 pm
Hi there...
This community interests me, in that I'm on hormones (I had SRS in 2000), and suspect that I have chronic fatigue syndrome. I'm currently on a disability allowance for panic attacks & depression.

If I go to my GP, what should I ask to test this out? And what can I do about it? A friend suggested I try multi-vitamins -- would this help?

Thanks for any help.

Current Mood: curious
Saturday, May 29th, 2004
12:25 pm
this community has been rather... asleep... for a while. i figured i'd kick it and put something out there for y'all. i asked this in the fibromyalgia community and got a great response from bailyjordan, but wanted to put it out there for you guys.

i'm thinking of starting oestrogen blockers to stop the monthlies and to use instead of ortho to keep ovarian cysts in check. does anyone have experience with oestrogen blockers or testosterone and fibro symptoms? have there been any studies done with hormone therapy in fibro patients?
Thursday, January 29th, 2004
10:46 am
We don't need this shit!
So much pain and hurt, our Melbourne trans community has just lost a sister and friend to suicide. We don't need this, it is an example of the kind of thing that makes suicide in the transsexual community, and in the wider GLBTIQA community (do you use the full "alphabet soup" letters in the rest of the world?) is so high. I'm trying to help, to heal, not hurt. If you want to know more, Sarah has a post on Claire's death in [Bad username: transabusevic"] Haven't seen much more than the comments to my own posts for a few days now, not enough minutes in the hour, hours in the day. Bless Testosterone for some serious Ass-kicking against both Fibromyalgia and Chronic Fatigue Syndrome. I still have to write an update for the trans_fibro_cfs community, just haven't had time. Shit, I haven't even done my 8 weeks on T update, there's just too much going on in life. Hugs, Simon
9 weeks on T and too busy to waste time with crazy obsessed people
Claire, I was too late to know you, but I will remember and fight to end the pain in your memory, and others we have lost too soon.
(Gay Lesbian Bisexual Transgendered/Transsexual Intersexed,Questioning Allies)

Current Mood: pissed off
Sunday, January 18th, 2004
5:44 am
three days ? of chaos and caring
The last 3 days have been so chaotic, trying to be there for friends, having them there for me, trying to support my daughter in a wait until 17th February before we get any answers on her hearing (what can an audiologist tell us beyond that it's not earwax). I'm about to try and get to sleep before the sun comes up.

Sarah, linkey, I don't know how to say thank you for giving me back my life (well the ability to remember it, the rest as you know I"m slowly processing the approx 30 years I'd blocked out). I'm definately going to continue working on that, and on the biography I have to write. No one should have to go through the pain so many of us go through, maybe if I can get a book published it might save even one wonderful person from ending their life too soon, if so it will be worth it. You've been in so much pain, but still been able to help me at the same time, you are truly a very special person.

The last week, the caring, chaos, support and friendship have shown me one thing. People can criticise the internet all they like, I've seen it save lives, sanity, bring happiness to my daughter as she deals with the fear of losing her beloved music forever (she can hear my very noisy vacuum cleaner up close, does that show that what she has can be fixed or amplified?), the internet being so visual has helped her a lot, as have her chat friends. Chris, Nathan, Irene, thank you for helping my bekaj, she's such a loving, caring and accepting young lady (at 14 with the maturity and humour she has coped with this latest I can no longer call her a child - Bek you are special).

To my friends who have been hurting so badly lately, I know you read this, things are going to get better. Thank you for your friendship, support and caring, sorry I haven't caught up with replying to comments at the moment, but I am thinking of you all, friends and community friends from all over here. Members of the communities I help run, trans_fibro_crs and transabusevic I send caring out to you all to heal physical and emotional pain, and thank you for reaching out despite your own pain and problems.

I know the last 3 days (has it really only been three days, too many nights staying awake I've lost track of where one day begins) have been incredibly hard, and the last few weeks not much easier. Hope things can calm down a bit now. Really looking forward to tonight, to go to a church that accepts me as I am, affirms who I am, after being rejected by so called "christians" at 16, to finally find a church at 44.

It's almost sunup, going to spellcheck (excuse cross posting) and then go to bed.
A very weary 5.30am goodnight, hugs, Simon

Current Mood: exhausted
Sunday, January 4th, 2004
11:40 am
New Community for trans abuse victims and survivors
Cross posted, please pass on to any trans victim of abuse (past or current)- thanks.

linkey has just started a new community. This community group is to help people who have been abused in any way, shape or form. This is a support network for Transgendered people - M2F's and F2M's.
Trans Abuse Victims
Helping Them To Be Strong
If you have been a victim of abuse, or know someone who has, we are at transabusevic. From my own experience, being able to talk to others who have been through abuse has been extremely helpful which is why I'm trying to get the message out to other trans LJ'ers. It's not my community, but I signed up as soon as it was set up. Helping each other to heal can be a very empowering and life changing experience. In many, many ways, much more powerful and effective than years of 'counselors' or psychiatrists. No, I'm not suggesting anyone try to replace a professional with a group, only that a group can really help, no matter what it's size, because unlike most of the professionals, we've been there, we understand. Hope we can reach those who would benefit from this group. Hugs, Simon

Current Mood: happy
10:19 am
CROSS POSTED TO trans_fibro_crs
Two really special things in one evening, both connected with music. I found a cassette tape that I had totally forgotten I'd recorded myself singing back in 1992 (before I got the flu that led to my losing my pitch holding ability for 9 years), and it has all 4 of the songs I ever wrote. As the voice changes with the testosterone caught me unprepared and I hadn't been able to record my voice before it started changing, I thought that all I would have was the phone message recording (which would have been difficult to retrieve from messagebank). Now I have 4 songs, I'm going to do a backup tape and keep it here, and send the other tape back to Ballarat with Irene, there is a place up there that can put taped or '78RPM (REALLY old records) onto cd! YAY!! We're going to try and work out what I"m not doing properly with the microphone on the computer too, so I can record from now on straight to computer, linkey can help with that.

The three of us, me, little_sista amd linkey spent hours last night on computers (in turns, 2 computers between 3 people, so I did some guitar playing while they were LJ playing), getting different things that I didn't know how to do worked out, etc. linkey also put my xmas present from Irene in place and hooked up, new computer speakers (I still had the old ones from the double speed cd rom drive put in in about 1995 there), they are great ones with volume control, bass settings and their own power system, so I now have a longer power board.

The other really great thing, one which actually had me crying because I was so happy was that I found my best guitar, tuned it as it's currently the only one in the house with all 6 strings, then I found some sheet music and started to try and work out what songs I can sing now that my range has dramatically altered. I managed two so far, fortunately the music was in a different key to the higher key I learned it in years ago, "Streets of London", it was great to sing that, it was one of my old busking songs. I definitely need to learn to control my voice, well I think it's still 'breaking', so I don't know how long it will take to settle down, but I think that once it does, it's going to be much easier to increase volume than when I sang many years ago. And it's really great to be able to sing some of the songs that were always way too deep for me to reach before. The best part though is being able to sing again after all these years!

Everything else is going well too. Five weeks last Friday I've been on the T, and the effect it's having on my fibro and cfs is fantastic, I'm actually starting to cut down the number of tablets I have a day, from 8-10 to between 5 and 7 (7 is usually the days where I either don't sleep or I only get an hour or two). Anyway, I guess if I'm going to stay awake (phone call from Michael saying he is coming over to visit) I'd better go and make some coffee. More later, and I'll try and fill in some of the missing time. I got a lovely spiral bound big fat journal from our friend Nathan in Texas, which I'm going to use as the hard copy of my transition journal, so I'll have to set up the other printer and get an ink cartridge so I can print out the trans related entries here, then I'll continue in both formats.
Lots to do, wonderful people to be with, and plenty to do when others are busy, this is total bliss. hugs, Simon

Current Mood: ecstatic
Wednesday, December 24th, 2003
7:11 pm
life... ish... in a particular opinion
well its day one of the christmas celebrations. at least i got out of a bit of work this morning because i had a doctor's appt but, well, i guess i felt too objectified by it in a way, so it didn't help much. i told the doc about having fibro but no rheumie and asked him if it'd be okay to have some flexoril, telling him that it worked when i used to take it a few years back, not telling him it works when i get it now from a good friend of mine (which is the real truth). with that being said, he starts reading through my entire chart and asking all kinds of questions and poking me.

this guy is standing in for my gp. i've obviously had issues for a while with rheumatic diseases, and i know what's going on. the nurses know so. this guy starts asking "does this hurt?" pushing a pressure point, "does anything hurt today?" (while its pouring rain and i'm obviously uncomfortable). he also makes wonderful comments, "if you REALLY have fibro" and "what can we do for you, then? shoot you?". i realize the latter was a joke but i don't even know him, what the hell is he doing making jokes?

to make it better i can't be out with the doctors in this area, so i was really uncomfy for a few reasons all at once. at least he gave me my meds. 90 of the lowdose, so i can keep going on them for a while.

Current Mood: sore
Saturday, December 20th, 2003
8:50 pm
6:22 pm
Mailing list for LJ community
In an attempt to get the widest possible group of people with fibro and/or cfs, I have started a yahoo group which will interlink with the community of the same name here. Family, friends and researchers also most welcome in both LJ community and yahoo group. Hugs, Simon

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Current Mood: productive
Monday, December 15th, 2003
8:03 pm
This community is primarily set up to get people who have either Fibromyalgia or Chronic Fatigue Syndrome and who identify as transgendered (FTM, MTF, etc). It is also open to friends of the above, or anyone else who is interested in the apparent correlation between Fibro/CFS and hormones, especially testosterone. Of course anyone who is interested in this subject is also most welcome to join, hopefully we'll be a bit of a support community as well as possibly gathering some information that may help anyone interested in researching to find a cure or treatment for either of these annoyingly disabling illnesses. Welcome, and hope you enjoy it here. community organiser Simon (teddybearsue)

Current Mood: contemplative
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