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.
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.
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.
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)
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.
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.
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.
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.
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?)
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.