I have decided to try coming to an on line support group, as there doesn't seem to be much going on in real life groups. LOL I am old, I hurt and am so tired of feeling like I do. I am tired of being sent to one Dr. after another, with no results. I have tried Lyrica, which only worked for a while, Codine, Cymbalta, Neurontin, pain therapy classes (a joke) etc. No results on the pain. I have lived this way for 20 plus years and I feel way beyond my 68 years. Try 168 and going strong. I try my best to keep a positive attitude and I joke and laugh a lot because that is the best therapy that I know of. I pust myself beyond limits and along with the fibro I have severe IBS which I have had for 40 plus years. It has now traveled up to my upper digelstive tract which the Dr. Calls Upper (#*$**@) Can't remember what. I have acid reflux, extreme belching which wakes me up all night long with chest pains, until I burp and wake up my husband with it. I also fart like an old trucker, pardon me, but that is the way it is. Oh, Lordy, God help anybody that is near me. I have a wonderful supporting husband, 3 sons and 7 grandchildren. My middle son has Chrons disease and my youngest son seems to be following me in all of my health issues, poor kid.
I love to read, embroider, knit and quilt. Without those things, I don't know what I would do to keep my mind busy, as it is traveling constantly. I am normally a pretty happy person but I do keep my broom parked out on the front porch so I can take a quick flight when I am dealing with my issues.
I do so wish that I could find a combination of drugs that would mellow me out. I don't condone pot but do use it now and then, to take the edge off. Don't know what I am going to do, when they close down the medical pot shops next month. Oh well, now you know a bit about me.
Hello to everyone and glad to be here. Squeaker
Thanks for your reply. I thrive on humor and it definately has been my best medicine. I do wish that there was a way to get across to people, especially family, to understane what we are going through. I think that the best thing for me was making my husband go in with me to my Drs. appts. and HEAR what the Dr. had to say, rather then just listening to me. I do beleive that she got through to him, much easier then I could have. I can pretty much hold things together, unless I have gone several nights with very little sleep. Any more, that happens quite often. Believe or not, the thing that has helped me the most has been Tylenol p.m. for sleep and pain.
I had Hepatitic C for more then 30 years and finily went through a year of therapy which was equal to chemo AND lota of pills, It was literal hell to go through and it killed my immune system, I had riba rash, my eyes got worse and on and on. I DID beat it though. Dang the side effects, they are worse then the actual disease. Oh well. I am Hep C free now. It also made my fibromyalgia, much worse. Blah Blah Blah. Enough of me. How long have you had fibro and what do you take to relieve some of the pain? Talk to you soon...
Hello Squeaker and welcome to this online support group. I too am very new to this site, and have only posted three or four times to date. I have suffered with fibromyalgia and additional health problems for over 33 years now. I am male and now 55 years of age. I’m also married and have two beautiful daughters and one brand new grand child. I like so many have been on so many medications through the years and have just finished the trial of Savella. Like all other anti-depressants I’ve tried through the years this one also made me feel very groggy and tired all of the time. Messed with my sleep and also urinary issues. I’m now doing additional research into drug called mirapex. It is not FDA approved for fibro, but I read a book by a doctor in Oregon I believe who has had good results for those who could handle side effects, including stomach upset, etc. For the past fourteen years I’ve only found relief from taking very strong opiates for pain. Without this pain relief while far from total, I’m not sure I could find the strength to go on. I’m sure you can relate at least while having a very bad flare. Please feel free to contact me anytime as I’m just happy to have found this site to talk with others who can relate. I may not get back to you right away as some days I just do not feel like getting online. I will however eventually respond, and will be thankful for a new friend.
HI! Squeaker and jaynor! I guess I joined right at the beginning of this group ‘cause I’ve done some pretty serious bitchin’ over the last few months and I see we have only 300 members with the new folk right now. I was so thankful to this group ( Gloria was one of the first to welcome me) when I found it! I seriously had NO ONE! My sons and thier familys deserted me because they say I ‘CHOSE’ to not visit them. They say that my choice was to hang out in the bar ( I was a bartender. Out of the 8+ yrs. I worked at the last place I can count on one hand the times I was in the bar that was not work related and it was the only place I went if I did go to a bar!) or sleep. Well … I did ok with the fibo until mentalpause ( intentional misspelling ) OH I hurt alright, just vicodin and motrin kept the edge off enough. Then when the hot flashes and stuff started to fade the fibro reeealy sunk its teeth in! Pretty much knocked the stuffin;’ outa me. Along with it came osteo and copd. Just an added dash of fun, ya know? Fibrofog, severe pain ( I had a D&C without any medication so I can DEAL with pain. Plus being a battered woman for 91/2 yrs. ),exhaustion, confusion all the nasties that go along with this fun stuff called fibro. I’ve been fighting SS since Feb. ‘09, so no $,then the person who was supposed to be here helping me just kinda helped herself to whatever she wanted to take and brought a bunch of druggies into my house since I was out of it half the time. Brainless dr. I had tio see after the good Drs. left took me off vicodin, said I was an alcoholic and put me on cymbalta which helped me put a gun under my chin in June of ‘09! Yeh! I dearly needed these people in this group! And Again, I thank all of you who put up with my ranting in the beginning! All of you saved me from killing myself… So, welcome to the 2 of you. I do have alot of reasearch on fibro I’ve gathered. The best thing I can tell you tho is that there is no one cure fits all in this do not let some quack convince you that you need to take ten different heavy duty drugs to make you ’ better’. Most of them just mess up your mind and make you a zombie. I refuse to allow myself to lose any mor to this fibro than I already have. So far the only thing that helps me is 2 750 mg vicodins and 2 over the counter ibuprofen, and 2 muscle relaxers a day. A combo of the 3 in the am and another in the pm – if needed. I Don’t take them on the days that I can’t even get out of bed. Just when I can’t deal with the agony any longer and I have things I just plain refuse to put off any longer. I’m sure when I get the SSD with the medical help there will be something that might help more but for now it’s just grin and bear it. Having a good sense of humor will carry you much further that mind numbing drugs. I also believe that there are some natural things ( herbs, vitamins, minerals that sort of stuff ) in the correct combo is the answer. Each to our own mixture. AND… Don’t ever give up! There will usually be one of us around on here to chat with. I often get on here at 2 or 3 in the am when I can’t sleep. Besides … I’m a 9pm to 3 or 4 am kind of person LOL. Like Gloria always says ’ Gentle Hugs!’ and God be with you from me. Jenni
Welcome Squeaker, I am pretty new here, and have never typed anything yet, but wanted to welcome you! I am sure I will get the guts up to say something in here sometime soon lol I do agree that humor is what it takes to get me through the day also.