Hi--

I'm a forty seven year old male who has Lyme Disease which has now been diagnosed as FM. I'm in constant pain and never have a let up in it.
Meds help, but it's only enough to keeps me moving and functioning.
It's been a long road and now I have to live with FM.

I just wanted to introduce myself before I post or respond to posts.

peace,
Ed

Hi Ed, welcome, hope to be reading your posts very soon. This is a great group, very caring and supportive.

I am fairly new here also. I have FM and MPS for 20 years and have progressively gotten worse. Also the IBS and was diagnosed with costro about a year ago.

Linda

Hi Ed, welcome, hope to be reading your posts very soon. This is a great group, very caring and supportive.

I am fairly new here also. I have FM and MPS for 20 years and have progressively gotten worse. Also the IBS and was diagnosed with costro about a year ago.

Linda

Thanks for the warm welcome, Linda. It's really nice to find a group of caring and supportive people. I had joined another message board for Fibromyalgia, but all there was to be found was alot of infighting. It was so off topic, I'm glad I landed here.

peace,
Ed

I just started on the message board yesterday and can't seem to find an icon for posting a new message. Can anyone help??

Ed

Welcome to our world. We appreciate having a man drop in and keep us in line. You are right this is a great place to post as it is a smaller group. I have tried posting on other fibro sites also and some of them are too overly religious or too big and one gets lost in the shuffle. On top at left there is a box that says New Thread. Also, look on bottom on posting rules when you answer to see if it says you may post new threads. I was lost for awhile also on starting a new thread -- well, to be perfectly honest I am lost a lot of times! The people here are all real friendly and there have only been a couple of times when their opinions on treatment were crammed down your throat repeatedly or negative somewhat hostile replies, but you always have a few who are just surfing, drop in to stir up the pot and not add anything positive. We do have a sense of humor also which is a requirement to survival after being diagnosed with fibro, etc., and trying to seek efficient treatment. How long ago were you diagnosed with fibro? What type of doctor gave you diagnosis? What type of meds are you on? Checking you out to see if male gets better treatment than us poor females who doctors seem to thrive on making us run around in circles. (TT)

Hi TT--

I have Lyme Disease and it's latest devastation on my body has been diagnosed as FM. it's been about five years now. I had multiple Lyme ticks bit me and go into the body system that I've been through all kinds of tests.
It's wrecked my whole body.

I'm glad I found a place to post. I hope it will be educational for me 'cause I feel like if I learn something new each day I'll be better off.

It sounds like you've been a long time sufferer. Sorry about that.

Ed

Hi Linda and TT---

Thanks for the warm welcome. I hope I can contribute to the site as well as I take out information from it.

Ed

Hi Ed,

Welcome to you. I've only been posting here a few weeks myself but it has made a huge difference in my morale. The people here are great. I too had a bad experience with a lupus board about four years ago, infighting, presonal garbage, you know the drill. So when I became disabled finally from fibro two years ago, I never thought about going to a message board.

But I was so lonely and isoalted with this illness that I gave it a shot and luckily landed here.

We have so much to learn from each other because there are so many different treatments that work for different people.


Have a pain free day - Andy

Hi Andy--

That's what I had with this disease---a sense of isolation, not knowing anyone else who had it and not knowing where to go to discuss it.
I am very glad I found this message board. I was on one but they kept having problems with members and there were alot of people being banned from it or having their posts moved to another board, etc.

I decided to end up here after reading some of the posts and realizing that people seem to be more genuine.

Ed

Sorry you are dealing with this as well. I have a good friend who also started with Lyme disease...although it wasn't diagnosed for a LONG time, then when it was she did a IV antibitotics to deal with that. Afterward she ended up being told by the doc that she has Chronic Fatigue. Because of her I can imagine how much "fun" you have been having! I have been dx'd for almost 2 years now with FMS. It has totally changed my life, and I am just beggining to figure out how to have a life with this illness...So much of the time I feel very housebound..and I get awfully tired of pain meds. BUT, I do try to remember that it really could be worse. At least with THIS illness I am alive! So, I hope that you are finding ways to deal with this. Glad to have a man posting!

HI Ed and welcome, I am sixteen and have had FM for 2 yrs. I don't have much support at home and I have found this board to be a great place to get info or to just vent anyways welcome and if you ever need someone to listen I along with everyone else is here for you.
Meg

Hi DecLady--

Thanks (with others) for making me feel comfortable in the group.
You're right about Lyme Disease--I was bit by three ticks and it ravaged my whole body and then I got told it went into FM.

Sorry about your friend. So many times Lyme Disease becomes so debilitating.
At one point I had to use a walker and a cane and when it went through my digestive system I actually had to use diapers for a while 'til they cleared that up.

It's been a miserable road and the final blow is the FM.

Thanks again for making me feel comfortable. I know that the group is probably mainly women, but it's a man's disease too (although not that often---I wonder why?)

Ed

Various specialists have told me that fibro is largely (if mistakenly) regarded as a "woman's disease" because more than 90% of the people who have it are women. I suspect that the real numbers are somehwat lower than that because of under-reporting by men, but I doubt that it would make a huge difference that would be all that statistically significant. The curent theory on why it afflicts women so muhc more often than men has to do with its roots - brain chemistry. The endocrine system plays such a major role in brain chemistry, and hormones do indeed affect neurotransmitter function, so the thinking is that something in the balance of hormones is implicated in FMS.

However, the perception that it's a "woman's disease" should be a big concern to ALL of us. (There's also a perception among a lot of docs that, more specifically, it's a *white* woman's disease - wonder how manyh women of color aren't being treated because of that?) First, it means that there are people out there who don't fit the profile who are in absolute misery and getting no help. Second, it's depriving the body of medical literature and expertise of findings that could wind up being significant in finding causes and treatments. As fellow sufferers, I think we all have a responsiblity do what we can to make sure that certain classes of patients aren't marginalized or ignored because they don't fit the profile.

Ajijaak

Meg---

Thanks for the reassurance. I can't deal with the pain alone. I know this support group can help. I've been reading the posts and am getting alot out of them.

thanks for the warm welcome!

Ed

Hi Ed
Nice to see you found us a nice board to post on hope to see you here soon ,hope all is well with you and your not in a flare .
hugs franny

Hi Ajijaak and Foxwalker--

Ajijaak: I was just gonna post something called 'Women vs. Men' as to why FM is thought to be a woman's disease. I know I got mine from Lyme Disease so when I saw your response I didn't need to post it. Your explanation sounds like something very plausable and does show why some people never are able to get treatment.

In my case I was told the Lyme Disease would give me RA, Lupus, or FM.
The first two were ruled out, the third definitely ruled in.

I really didn't know about the hormones and chemical responses, but if female hormone take over and cause this problem I can only hope they find a cure for this disease sooner or later. It does seem that women are suffering more than men. it's a true-ism.

Foxwalker: Yes, isn't this message board great! I am so glad you made your way over here. Now we can still remain in touch through posting and also e-mails. I didn't want to lose a close friend like you.

Ed

Welcome, Foxwalker!

Cool user name! Do you mind if I ask how you came up with it? Always nosy - er, interested . . . . :wave:

For both you and PapaRoux: Did you two come over here from the immun******** message boards? I thought I remembered seeing both of your user names over there.

And Ed: As I've said before, I'm a mouthy broad (well, in this case, it's fingertips, but you know what I mean). Don't ever let me pre-empt a post; I'm sure you've got stuff to add that I omitted, didn't know, whatever. I just spout off whenever I think I might have info that might be of use to someobody.

And as far as the hormones go, yeah - can you imaigne the implications this would have for other illnesses and conditions if they were actually able to isolate hormones involved in the relevant brain chemistry?! It could lead to whole new methods of pain management (and pre-emption) across the board, for men and for women. I really wish more docs, instead of telling us it's in our heads, would actually *look* IN OUR HEADS, if you know what I mean!

Ajijaak

Hi Ajijak--

Yes, Foxwalker Franny and I came over from that other message board you mentioned. For me, it became an overly moderated session of favorism and 'know it all-ness' by one of the moderators. There were some comments that never should have been made and many people were banned. Personal problems related to FM were also moved off the board. I wasn't banned, I complained, nothing happened, so I left.

Ajijak--are you now or have you ever been a commun.....I mean member of the other board..............LOL.......

Ed

Ha! Yes, I have - and I left for the same reason.

Actually, I had one really bad day last week, right after my father was admitted to the hospital, where I just couldn't cope anymore, and I posted a vent. And, yes, it was venting about family problems, but it was also asking for advice. It was apparently moved or removed immediately, and no one ever even had the courtesy to tell me what/where/why, etc. However, I've noticed that an awful lot of people over there post a lot of things in violation of the supposed rules and get kudos for it. So, I decided that that kind of power concetrated in the hands of two people, with no guidelines or standards, just their personal opinion, wasn't for me.

(And, needless to say, I got no responses to my request for advice/support.)

A

Ajijaak--

I'm glad you saw that message board for what it is.
I have to admit I like this one better, too. It's easy to catch up on posts and know where to respond from the info given when you see the posts.

Ed