First Blog Post
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13 Responses to “First Blog Post”Speak Your Mind
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nothing about fibromyalgia is fun. you never know what’s coming next. Trying to use new laptop and find other people with my same challenges, or anyhow some of same. Hello out there!
I am so confused. I have had FM for 4 years and still haven’t gotten the meds right. I don’t sleep and when I do it is a dead sleep for about 4 to 5 hours usually around 5am to 10am is the best sleep. Then when waking up I hurt all over. Cant tell if it the FM or RA or my back, all seem to go haywire at the same time. I am getting really tired of all this home live is a joke, the man of my dreams tries to understand but I know he really doesn’t not the same person he married. Memory loss is at a all high, life is not the same.
this on line chat has been a warm open connection for me .as weall know fibro support wanes as our families and friends get busy we are forgotten. Thr out holidays and busy times were just there ….never really alone ..fibro is always at our side,every hour moment and second fibro takes its toll and wants to be first sometimes screaming sometimes crying out to be heard and seen but we must cotrol this fibro …it takes every everthing i have just to manage this burning disease that cant seem to find its way out and is stormingly angry because it wants out and i and so many others just cannot relieve it to let it go to not have a lifetime of fibro pain that is bigger than us.for all of us learning there are so many helps and hurts me.too many tooyoung to loose that part of you that you fight so hard to keep your soul.
every moment of every day I wonder… If I do this how bad will I hurt later… Is it worth the effort… How tired will I be… Will I be able to drive to get my son from school if I help clean the house or fold two loads of clothes… What happens if I don’t push myself? Will everyone think that I am useless and lazy? I can’t do anything strenuous on days that I have major things I have to do later. Will they think I don’t care and that I don’t want to help out? I want so bad to work out in the ministry but I can’t do what I once was able to. My friends see me one minute able to do semi well then the next hour able to do nothing but sit there and cry. They see me as more of a burden than a help. I know they don’t want to think that way but it is human nature in this day and age to push those to the side that are holding you back in any way. So me and so many like me… Get left behind in the hustle and bustle of this crazy world. Some how we fight for our voices yet we at times seem to fade away. Into our own worlds where we can deal with the problems and the issues that we face. Usually a very lonely place…. Until you find friends and others… Like the ones here.
I hear ya furbee, I am in the same situation. My husband doesn’t fully understand my diease and he thinks if he pushes me hard enough that i’ll do things..like cleaning the house. I mean I do have good days and can do it, but I also have bad ones and can barely move. He just wants to help but doesn’t know how. And yes, I do sit and just cry because of the pain and frustration knowing there isn’t anything I can do about it. I have no real friends at all because I can’t do all the active things they do. But I refuse to let it take over my life completly, and I do fight it often, then I pay for it for days due to pushing myself to hard. I now have a caretaker come in for 2 hours every other week to help me do the hard cleaning, like getting on my knees and scrubing the tub, and the floors. Those seem to be the hardest for me to do. I have a 11 yr old who really understands better than my husband and he helps me more than he should. I mean I’m his mother and I should be doing things for him. But hes seen me at my worse and knows what I go thru everyday. Thank God for that…hes my saving grace in a world that just doesn’t understand. You take care hon and stay strong and try to be positive(i know how hard that is!) and think about what you do have and stop consentrating on what you don’t!! {{{{{lots of soft hugs to u}}}}
Hey all, i have just been diag with fibro. Yesterday to be exact. And of course the first response was from my mom and she said, “you know that is an imaginary disease.” Wow, what support right.
It took 6 doctors and months of apts and tests to finally get an answer. and of course not the on i wanted. You know some times you want them to find something so they can fix it and you can go on about your life and not have to worry bout, planing a fun weekend and then the weekend get here only to find that you dont feel like going. Any info would be nice to here from people that have walked in the shoes that i have just put on .
I wonder why something as simple as a disability should make us outcasts in society. I mean even my sister doesn’t want to know me since I became disabled.
I spent Christmas alone because I was in such pain U understand,
I couldn;t be in anyones company because I refused to put a damper on
their jouous day. Why can’t something be found to relieve this horrible pain?
Hey all, this is new for me, and I really hope this all works out..
I’m a 20 year old girl in the big world. I got diagnosed with fybro a long time ago. And I’ve noticed that the older I get the worse this disease gets. As each grade went by in High School the harder tasks got, such as: waking up early and doing the things other kids were [P.E, dances, hanging out, etc]. But now that I’m in College, I can barley get out of my bed to go to the bathroom, school, or even talk on my phone. I’m trying to live my life to the fullest, but when I try, it just makes me tired and worn out. I try to explain this to my family (which my mom has the disease), my friends, my bf & his family. But NO ONE understands. They think I make things up, or they say its just part of the disease and I just need to accept whats going on. But I’m trying to go to school so I can get a good job, but im struggling with that, and I’m just worried that I wont make it in the big world. I just want to have someone to talk to that understands me, and that doesnt shot me down or say im lazy.
I was also wondering if anyone knows any medications I could use; any workouts they are doing that helps; any food that they live by, and avoid. I don’t know anything, and could use some help.
Thank you so much,
Brittany
HELLO, ALL YOU FM SURVIVORS. MY NAME IS ANNIEB AND I HAVE BEEN TOLD I HAVE FM. I CHOOSE TO HAVE THE FRAME OF MIND WHERE I BELIEVE THAT I HAVE FM AND FM DOES NOT HAVE ME. IT IS A NASTY AND RELENTLESS SYNDROME BUT I AM BIGGER AND STRONGER THAN IT, THANKS TO THE GOOD STRONG ATTITUDE THE LORD GAVE ME. WE CAN ALL HELP ONE ANOTHER THAT’S FOR SURE AS WE ARE THE ONLY ONES WHO SEEM TO KNOW WHAT THIS THING IS ALL ABOUT. WE CAN DO DO ONE OF TWO THINGS GUYS AND GALS. WE CAN LAY DOWN TO IT, OR FIGHT IT EVERY STEP OF THE WAY. I HAVE A FEELING YOU GUYS ARE A STRONG BUNCH AND I AM GOING TO ENJOY BEING A PART OF YOUR LIVES IF YOU LET ME. I AM SCOTTISH BORN AND BRED AND NOW LIVE IN THE STATES. I ALSO POST IN ANOTHER FORUM CALLED FIBRO 360. HOPE TO HEAR FROM ALL OF YOU. p.s. Firbomom, I heard you were here. Miss ya!
I have severe fibro but I am lucky enough to have found a pain management center near my home. They do yoga PT, occupational therapy, aquatic PT, medication management, and art therapy. I am eternally grateful to the staff because I went into the program barely able to move, I mean an ambulance had to bring me to my appointments on a stretcher, and now I am able to do a yoga class a week, two swimming sessions, and Pilates on Friday. Using public transportation.
) Everything I did helped immensely, but the aquatic and yoga helped the most. The medication is good, too. I take Lyrica, Savella, Celebrex (I also have osteoarthritis), and Norflex. There is also an amazing chronic pain/illness group which is drawing attention from all over the city because we have stayed together for 3 years and we are like a family. Thank you to the Comprehensive Pain Treatment Center at Langone Medical Center in NYC.
Nice to meet y’all.
Hey Brittany,
Here is my fifth attempt to write to you. Hope this one works out.
You say your mom has Fibro – she, if no one else, has to understand. If not, then she was misdiagnosed. I know that misdiagnosis is rampant right now.Its the new thing that gives docs an excuse to prescribe more psych drugs. I personally will never go that low! To give myself a chemical lobotomy for the sake of pain. unuhh
You say you know nothing about what to do or take and yet you have been diagnosed a long time ago. Why is that?
General doctors do not know anything about FM and so we all must take matters into our own hands and do research and experiment with foods etc mainly on our own. A good website is http://www.endfatique.com. Dr Teitlbaum says he had FM and cured himself. I dont believe that but he does have some products that help. He has an online questionaire that you can do for free – the short one. You submit it and he sends back his suggestions for you of what to take. Some that i use are: Revitalizing Sleep Formula. Sleep is the most important thing to deal with and early on. I made the mistake of not doing that early enough. Any how, along with the Sleep formula, i take Tylenol and Gravol, or a night time cough syrup and powdered Magnesium. These all help to get into a deeper sleep. The magnesium that is best is called Natural Calm and it is by Peter Gillham in the US. It is a powder that you mix with water or juice and you can drink it during the day to help with stress also. I like it best as a warm drink.
If you can get the Myers Cocktail (a vitamin and mineral mix given by intraveneous) that helps wonderfully. I used to get it when i lived in Toronto but up her in Alberta i cant get it anymore. So i’ve tried Vit B shots. 100ml per month was not enough so ive gone on to 50ml per week. that is better.
i am now going to try a Celiac diet and see if that helps also. The blood test for it showed negative but the doc says i probably am celiac because i am allergic to wheat, oats and barley. You could get checked for allergies and celiac.
well, i hope this time this message saves and that you read it and find something helpful in it.
I will tell you what i have tried that is helpful
Blogging, I have always wondered about this, tried it a few times, and still I always seem to disappear or caught in the real world. Life is never what we really think it is going to be. I had a kid, who had her life all mapped out. High level sports, university degree, free ride to wherever her heart wanted to go. Then, Fibro,CFS, immune suppresant disease hit her. For the longest time she denied anything was wrong.Kept pushing herself, self medicating which we didn’t notice at first because she didnt’ seem sick. The scariest thing was the emotional issues that come witht this hideous disease. Some times you think your kid has been taken over by a space alien. She finally had to quit school, stop playing sports, she didn’t know then how to think of herself. She couldn’t walk without the aid of her dog. No one understood, I spent countless hours driving too and from doctors and we never got any answers. Finally, he found a Rheumy, who diagnosed her with this and she became part of the pediatric pain team. It works, to some degree, but she is always in pain, not matter what we do. 600mg of Lyrica takes the edge off, but she has never been the same. She went into a deep depression because she wasn’t who she was anymore if you know what I mean. Then I start feeling really off.. Joint pain, shakes, whole body shakes… heart pounding so hard, the weight started falling off.. I get diagnosed with Graves disease.. For those of you who don’t know what this is, I wouldn’t wish it upon my worse enemy. After RAI therapy, I am still having severe joint pain.. off to the Rhuemy, who after 1 year says I feel you have Fibro.. Great just great… not nearly as bad as my oldest but still.. Because in the mean time, my youngest .. is getting sick. I can’t believe it.. like What is going on??? What did I do to deserve this or better yet what the heck did they do!!! She is having trouble, walking her knees are hurting, then she is falling asleep in class, okay, normal mom thoughts are she has MONO.. Nope.. test came back negative… I keep pushing her to go to school.. Then she starts having blackouts, or losing her sight and getting extreme headaches, numbness and tingling in her legs.. We start on this adventure to find out what is wrong all over again. Not MS.. they say, no lesions, no tumours on her spine, causing the loss of bladder control.Now the joint pain is very bad and she can’t go to school, off to the Rheumy again, this time a different one.. They want to run many tests but best case scenerio is that she has Fibro and will need to be followed by the Pedatric pain team .. Now we wait.. until March 30th, to find out if she has this. It is like an ax hanging over her head. She is tired so tired, we had to buy her a new bed, because she was so uncomfortable.. like I had the money.. Life is happening all around us but in our world it is like time stands still. The hurt is so bad, the headache that she has had for over 2 months now.. with no relief.. They won’t give her anything for pain until they know what they are treating her for, I can understand that, but watching your child suffer day after day… it is too hard…