Fibromyalgia Support Group

To all of my fibromite buddies, and anyone else with a chronic pain disease, I'm sure you can all identify to how i've been feeling... And i need to vent without making anyone in my family or circle of friends concerned.

I have my first appointment with a new doctor on Friday... I really hope it goes the way i need it to. Since moving here two years ago I have felt almost NO relief... Its so damn infuriating. I am going back to the basics with a primary care doctor.

I'm tired of specialists. I don't want to take Lyrica, it doesn't work for me. I'm fine with Cymbalta, but it makes me down right insane at times. I know what I need to feel better, but the specialists always want to try EVERYTHING but what works. I've been through physical therapy, i've lost about 50 pounds in the last 2 years, i even bought a memory foam mattress (which i've only had for a week, but i can tell a difference already). I want to feel normal.

I am 23 years old. I can't get disability, I can't work full time, I can't go to school because my body hurts relentlessly. The worst part is that before i moved I felt great! I was on the medications that work, and i was working 40+ hours a week. There are times that I really believe that if i were older, someone would be more willing to help me. If one more damn doctor says to me, "you're young, you should be feeling fine", i may just punch them in the face. I know how hostile that sounds, but i'm really counting on someone out there identifying!

Anyway, feedback would be wonderful, and i'd appreciate anything anyone has to say on the situation.

Thanks for listening to me!

Hi Hannah im sorry ur docs can't figure it out but sometimes u need to tell them im paying u so listen to what I say and if they don't u get ride of that one and get a new one. I had to deal with docs for 3yrs before they listened I had to get mad but it worked hope this helps and u feel better.

HI, Hannah, welcome! Where are you located abouts? Check the Mayo Clinic's website for some of their downloadable info on Fibro, and take it with you if you have reason to think your new doc just doesn't "get" Fibro. What treatments were you on before?

Hannah,

Welcome to the group!

Hannah Warm welcome to You first of all ! Secondly yet equally first-it's natural to feel the way you feel plus can identify as when fibro hit me was 24 years old so similar age to you now + like you was pretty angry especially with medics or anyone who said you are young you should be feeling good as heard the same trust me! Was mega fit plus mega healthy prior to fibro so like you the difference between old life to one with fibro new reality was vastly different-a big shock to system! Remember getting pretty cross with my neurologist at the time as felt he was not taking me seriously-he felt threatened by me even though was only being assertive plus could never hurt him besides was too weak anyhow yet he called for a nurse to be alongside him-very surreal! Vent here as we are all here to support you plus we can offer you our experiences too as well as encourage you! Found first year of dealing with fibro the most difficult yet from the second year on learnt to be a fibro survivor+ own life coach! Please lean on this British fibromite anytime ok! Life with fibromyalgia with its myriad of tough struggles are far from easy to deal with even when positive/optimistic in mindset yet we can lead a full dynamic life if we have the right attitude plus stick around the right kind of people + realise that even with high pains life can still be beautiful as well as a blessing if we chose to make it so! Holding on to each others hands really helps too!For sure you are not alone+ there is always hope even when you cannot seem to find hope or see signs of hope! please check out my fibro article here in Articles section'How to survive fibromyalgia A-Z' and my article in Fibromyalgia Challenges Sg 'Fibro AIDE'! Also please check out Viv's(Mitzigirl)article 'Still Me:Living With Chronic Pain'- in the Articles section of Chronic Pain SG here on mdjunction, too! Also please read the newly published awesome book by Katie Piper called,'Things Get Better'! We are all here for you+ me inc! take excellent care of You! Super welcoming soothing hugs Love Clarita xx xx (¡)Angels mightily bless you Hannah(¡)may it be so!

Hi Hannahsolo

I agree, doctors tend to want to minimize things. I don't think they do it because of your age. I think they do it to everyone. your age was just the tact they chose. if you say "I can't remember things.". They say "oh that happens to everyone, I forget things, too, it's part of aging, blah blah blah". If I talk to my pain specialist about my headaches, he may say "I have a headache, too". if I say I can't figure out why this new pain in my bicepts has cropped up. I'm not useing them, and they feel like I've been using weights to do curls". Reply: Well, you might as well do some bicept curls, if they're going to hurt.

This guy is really nice,so I've decided it's must be something related to listening to people complain all day. And I'm sure they see patients that they think are overly dramatic. The minimizing is sooo annoying. But I think it's some kind of human nature thing. Lord knows my mither does it too.

having made all my excuses for them, you really have to research and make sure that a doctor believs in fibro in the first place, and secondly, I hope you check them out on the internet reviews, for general attitude toward patients.

You have been well and truely screwed by hitting disability so early in your life &carreer years. . i'm so sorry, that must be a very stressful thing to muddle your way through. you are reminding me to count my blessings that I was able to work long enough to have some disability earnings.

I hope someone does enough research to come up with answers before you get to middle age. it's just not fair.

I initially did lots of specialists. then I got sick of that for a very long time and tried to stick mostly to my primary care doc. Then I had to move, and wound up in a state with doctors who push you to specialists. It's not all bad, because sometimes they do know more. You may go in phases, too. Thanks to the universe for giving us the internet. it takes a little of the power out of the doctor/patient relationship, and gives us access to more opinions. I haven't got a clue why doctor's wouldn't just let you do what you KNOW helps you. That has happened to me, too. One doctor labeled me as drug seeking, because I knew what antibiotic I wanted (blood in urine), and my TMJ dentist had insisted I get a doctor to prescribe the headache medicine he put me on, he wasn't allowed to keep prescribing it. After the first/ only appointment he wrote "possible drug seeking behavior" in my file, and those were the only records the disability folks requested.

Sorry-- I could spend too much time commiserating with you about doctors. Hope you find one that listens, soon.

HI Hannah, great name! The thing that I've found that helps is try not to be intimidated by the docs. Just cuz they have a degree doesn't mean they know your body. Hopefully you have your past records over to them (not like they really read them before you get there, but some might) Anyway, just be frank and tell them what you have tried that didn't work and what did. I always get nervous at my appts so I giggle alot which isn't representing my actual pain and other symptoms. I'm lucky that I have 2 docs I love and they listened to me when I first went to them. Good luck with your appt and remember, they work for you!

So sorry for all your frustration and pain. I can relate in many ways. I have had 3 spine surgeries (stemming from a car accident that broke a vertabrae in my mid-back causing problems throughtout my spine) after my neck fusion in 2005 I developed Fibryo. on top of my neck not fusing in a timely manner 8 months in a 24 hour a day neck brace my whole body started hurting& aching relentlessly, welcome to fibro.I already have had IBS my whole life & just felt like why me??????add on another spine surgery 2 years later & the chronic pain class, was still trying to work & having 1 of my chronic pain Dr's telling me " if you could change your type A personality you won't be in so much pain" really????? I've been high stung & hyper my whole life Dr. I didn't start having this till after surgery...he said this repeatedly to me UNTILL I decided noooooo more ( he was morbidly obese) I told one of the other Dr.s in the program, if he says this to me again I'm going to tell him straight out if he stops eating so much he won't be so fat!!!!! needless to say he didn't keep telling me to change my personality (geeze I mean really) but having been through lots of specialists and 3 primary Dr.s in the last few years, I finally have great dr's. who are actively trying to make a difference with me. I was diagnosed with lupus last year too & was just plain sick of feeling sick & tired....got a great rheumatologist & a new primary & went into medicine because her Mom suffered terribly with rheumatoid arthritis. She takes EVERY thing & symptom I have seriously & works with me to try new & current things....it ain't easy but this is my life & I have to enjoy it regardless of limitations and pain! taking control of my health relieved so much of the anxiety for me, I just am NOT willing to put up with anything other and decent care!!!!it's what we have paid into our whole lives and I will not accept less. I wish you luck & health....keep us posted and please remember to enjoy the small pleasures in life, they REALLY are the MOST important~

Michele

Hannah and Michele, welcome to this group. I'm sorry you needed to find us but, glad you did.

Michele,

Welcome to the group!