Aa
New Here..
No questions, just wanted to say hi!
It has been a long time since i was on a FMS message board. I added some info on my profile, and some pictures of my family.
I currently believe I am on the right mix of meds, because i have more good days than bad. (although the aches and pains are always with me,just degrees of severity...) I was diag. in 1982..when it was called fibrositis and there was only a paragraph or so, i could find on it, at the local library.
I am glad i found this board..been doing some reading of the posts..
It has been a long time since i was on a FMS message board. I added some info on my profile, and some pictures of my family.
I currently believe I am on the right mix of meds, because i have more good days than bad. (although the aches and pains are always with me,just degrees of severity...) I was diag. in 1982..when it was called fibrositis and there was only a paragraph or so, i could find on it, at the local library.
I am glad i found this board..been doing some reading of the posts..
It is so hard to lose a friend, but let the good memories just flood you...
I just had to make an appointment for a colonoscopy,
(having some issues) the nurse told me i will have to quit taking the ketoprofen, one week prior to the procedure. that is gonna be one bad week. if i miss one dose..i can tell right away...
I just had to make an appointment for a colonoscopy,
(having some issues) the nurse told me i will have to quit taking the ketoprofen, one week prior to the procedure. that is gonna be one bad week. if i miss one dose..i can tell right away...
"...and i can dang near turn cartwheels and spit nickles within an hour"
Send pics!!! lol
I'm so sorry to hear about your online friend. One of mine passed away last month and it hit me pretty hard because it wasn't expected. She was so lively and never complained about her health...such a beautiful, free spirit and i'll always remember her for her talent and kind heart.
Sounds like you have some attentive doctors and that you've had some good ideas to help you cope with this life-changing illness. I hope you continue to do well with everything.
take care
Send pics!!! lol
I'm so sorry to hear about your online friend. One of mine passed away last month and it hit me pretty hard because it wasn't expected. She was so lively and never complained about her health...such a beautiful, free spirit and i'll always remember her for her talent and kind heart.
Sounds like you have some attentive doctors and that you've had some good ideas to help you cope with this life-changing illness. I hope you continue to do well with everything.
take care
Welcome aboard ! I am one of the Co-CL's here and my primary diagnosis is Chronic Fatigue Syndrome. I'm glad you are here and I'm sorry to hear about the passing of your online friend. I know there is a physician who frequently sees fibromyalgia patients because her sister had fibromyalgia and then leukemia. Her sister also died from cancer. There is a link between pathogens and cancer.... we have some of that info in our health pages (I believe... I'm brain-fogged !)
Glad you found this place and I hope that you will stick around.
I was in a great FM message board years ago..i can't remember the name of it..it had an older gentleman ( did we call him "gramos"?) that lived in the center of michigan.(you know how the memory is with fibro...)..anyway, all i remember is he was a retired truck driver, he had fibro and also had lukemia. he eventually passed away. But prior to his passing, he invited us all to his place, to bring our campers or to stay in home with his wife. he was such a sweetie..and the people on that message board were just awesome. we live south of detroit, but a bunch of us traveled to his place, and got to meet these wonderful people who we talked to on line for a long time..it was so cool to meet everyone. The message board closed up, not long after his passing..
the few i have gone to for support,have not been what i was looking for..to many FWDS and jokes..nice people though..but not what i was looking for. I think this is going to be a great fit!
My "cocktail", which took a couple years to get right, (bless my shrink and Dr.'s hearts! )
consists of these meds:
Cymbalta 60mg in the AM
cymbalta 30mg in the PM
Lexapro 20mg 2x a day
Buspirone 10mg 3x a day
ketoprofen 75mg 2x a day
these help me deal with the OCD/depression and pain. when i get into a bad flair..i run (crawl) to the Dr. and get a shot of teradol ? anti inflamatory.. and i can dang near turn cartwheels and spit nickles within an hour..(ok, so i exaggerated, just a little! hehe) I call it a miracle drug..that the Dr. says you can't take it to much, it causes damage to other body parts eventually...
truthfully, it's my body, and my pain..i begged the Dr's, at the time viox was taken off the market..to let me keep taking it, i would sign a waiver, but that was not to be. vioxx worked for me, the short time i was on it, but i suspect, that it would of quit working eventually..like most meds, for pain, you build a tolerance to it, the up the dosages..until, it just quits working...
any how...That my story..on the meds things..
i only take stronger meds for pain, when i just can't go on, or until i get in to get a shot..i don't take pain killers if they are going to make me "drugged" or out of my mind..i got to much to do in life to spend it "out of it"..that is just my opinion..of course..everyone has to do what is good for them..at that time in thier life..
I take a hot bath every night..i have an over the side, whirlpool thingy..it is old, but works great...it helps me move..my legs and body..loosens them up..
the mornings are the toughest..i take forever to walk right..but once i am moving..i get better as the day goes on..movement wise.
i miss my "mind" the most..(Like the old joke).
the forgetting, drives me crazy...i have just learned to get around it..i keep a small micro recorder in the car..i have a pampered chef timer i clip to my shirt when i am cooking or using the oven..or doing laundry..I have a community (the kids are gone, my "community " consists of my, the hubby and
my 2 D O G S (shhhh, they don't know they are dogs..i never told them...)dry erase board..in the main room, the kitchen..we use it for everything..I make notes all the time..this things help me "not forget"..i set a timer on my cell phone to remember appointments..it is how i cope...and it works for me..
geezz...did i talk your ears all off?! lol!
oh oh oh..i quilt too! anyone one here quilt? !
the few i have gone to for support,have not been what i was looking for..to many FWDS and jokes..nice people though..but not what i was looking for. I think this is going to be a great fit!
My "cocktail", which took a couple years to get right, (bless my shrink and Dr.'s hearts! )
consists of these meds:
Cymbalta 60mg in the AM
cymbalta 30mg in the PM
Lexapro 20mg 2x a day
Buspirone 10mg 3x a day
ketoprofen 75mg 2x a day
these help me deal with the OCD/depression and pain. when i get into a bad flair..i run (crawl) to the Dr. and get a shot of teradol ? anti inflamatory.. and i can dang near turn cartwheels and spit nickles within an hour..(ok, so i exaggerated, just a little! hehe) I call it a miracle drug..that the Dr. says you can't take it to much, it causes damage to other body parts eventually...
truthfully, it's my body, and my pain..i begged the Dr's, at the time viox was taken off the market..to let me keep taking it, i would sign a waiver, but that was not to be. vioxx worked for me, the short time i was on it, but i suspect, that it would of quit working eventually..like most meds, for pain, you build a tolerance to it, the up the dosages..until, it just quits working...
any how...That my story..on the meds things..
i only take stronger meds for pain, when i just can't go on, or until i get in to get a shot..i don't take pain killers if they are going to make me "drugged" or out of my mind..i got to much to do in life to spend it "out of it"..that is just my opinion..of course..everyone has to do what is good for them..at that time in thier life..
I take a hot bath every night..i have an over the side, whirlpool thingy..it is old, but works great...it helps me move..my legs and body..loosens them up..
the mornings are the toughest..i take forever to walk right..but once i am moving..i get better as the day goes on..movement wise.
i miss my "mind" the most..(Like the old joke).
the forgetting, drives me crazy...i have just learned to get around it..i keep a small micro recorder in the car..i have a pampered chef timer i clip to my shirt when i am cooking or using the oven..or doing laundry..I have a community (the kids are gone, my "community " consists of my, the hubby and
my 2 D O G S (shhhh, they don't know they are dogs..i never told them...)dry erase board..in the main room, the kitchen..we use it for everything..I make notes all the time..this things help me "not forget"..i set a timer on my cell phone to remember appointments..it is how i cope...and it works for me..
geezz...did i talk your ears all off?! lol!
oh oh oh..i quilt too! anyone one here quilt? !
Hi strut526 and welcome. We are happy to have you here with us.
I am much like yourself, in that I was dx'd long ago (approx. 38 yrs.) and it was called 'fibrositis'...I also had no idea what it meant because of lack of info. Same thing when I came down with costrochondritis...maybe had one reference on the entire web about it. We know so much more than back then so progress is being made.
What is your combo of meds? I'm so glad they are working for you.
Take care and have a great day.
I am much like yourself, in that I was dx'd long ago (approx. 38 yrs.) and it was called 'fibrositis'...I also had no idea what it meant because of lack of info. Same thing when I came down with costrochondritis...maybe had one reference on the entire web about it. We know so much more than back then so progress is being made.
What is your combo of meds? I'm so glad they are working for you.
Take care and have a great day.
Hello.
I am new here also. I have also had some bad experiences on forums however, I have had some good ones as well. This forum seems well organized and insightful. There will always be differences in opinion but then I believe FMS/CFS can affect people differently and treatments vary according to what works for the patient. It would be great if there was a medication that worked well in all of us and our symptoms would just go away! I hope in the future they will find out what causes these syndromes and treat the root cause instead of just treating the symptoms. In the meantime, we can at least share information and try to support each other.
I am new here also. I have also had some bad experiences on forums however, I have had some good ones as well. This forum seems well organized and insightful. There will always be differences in opinion but then I believe FMS/CFS can affect people differently and treatments vary according to what works for the patient. It would be great if there was a medication that worked well in all of us and our symptoms would just go away! I hope in the future they will find out what causes these syndromes and treat the root cause instead of just treating the symptoms. In the meantime, we can at least share information and try to support each other.
Good morning and welcome.
Before I settled and put down roots here at MH, I tried several other Fibro forums. EEEEK! What a horrible experience that was. The last one before I found Medhelp was almost comical. If you disagreed in any way with the two members that seemed to know everything about anything, out you go. This has been the best experience I could have asked for.
The CLs are wonderful women, they keep the Health Pages up with info, the members are so good and kind, even when a flare from hell is attacking them. I felt at home as soon as I joined. I've been really ill this last couple of weeks with a flare that doesn't seem to be going away. But I still try to check in every day. Again welcome to our community we're glad to call you "Fibromite" and that is said in a good way.
gentle hug
Angel
Before I settled and put down roots here at MH, I tried several other Fibro forums. EEEEK! What a horrible experience that was. The last one before I found Medhelp was almost comical. If you disagreed in any way with the two members that seemed to know everything about anything, out you go. This has been the best experience I could have asked for.
The CLs are wonderful women, they keep the Health Pages up with info, the members are so good and kind, even when a flare from hell is attacking them. I felt at home as soon as I joined. I've been really ill this last couple of weeks with a flare that doesn't seem to be going away. But I still try to check in every day. Again welcome to our community we're glad to call you "Fibromite" and that is said in a good way.
gentle hug
Angel
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