Frustrated W/Fibro

[txsasmom57]

I have been dealing with doctors for over 20 years. Been thru every kind of test imaginable. In 2000 I was finally diagnosed. Going to see doctors now is still a real challenge. Just last week I was seeing my Primary Health Care Provider. A new doctor. When I explained I have Fibro and am having a flare up she roller her eyes at me. She ordered up 8 tubes of blood for "tests", handed me a script and patted me on my shoulder. When I looked at the script it was for "Buspirone (BUSPAR)" An antidepressant. This is a very strong medication from what the pharmacist told me. I am going back tomorrow to have a discussion with this doctor regarding the medication she wants me to take. She never did discuss with me that she was giving me this or why. I have not filled the script or started taking it yet. I wish I knew why so many doctors want to throw us an antidepressant rather than look for alternatives to help us. My goal is to try and get a referral for a Neurologist or Rheumatologist. At least someone that has a bit more experience dealing with pain management. Fingers crossed

[alesia]

Good luck with finding a doctor. I have been to 2 rumatoligist & one orthopedic(pardon the spelling). The first one bent my knees & twisted my hips and told me to take tylonel arth. and I could not understand what she said. The second doctor tried me on this , then that, then something else. He told me I was able to get SS disability. So I quit working & kept going to him still hurting. After 3 months & my short term disability has denied me because of not enough proof, he tells me he has done all he can ( as he holds his hands up). So I go to another one for a second opionion, he says I am on the wrong med. & need physical therapy & I can go back to work in 2 weeks. In 3 weeks I talk to him & tell him I am still the same and not working, and am still hurting. I tell him when I work I have to take 4 different pain meds & still am hurting so bad by the time I get off I go straight to bed. He tells me, he hurts too, but he just deals with it.......... I left crying. I am looking tonight for someone who actually treats fibro. Not having much luck.
You may want to find someone who is being treated for fibro. and go to their doctor.
Tomorrow I am going to call some people that have it to get their doctors name.
wish me luck
I hope you can find someone to help you.
Alesia

[txsasmom57]

Hey A
I went thru that for many years before finally getting a diagnoses. It was so dern frustrating. Being a military family memeber i had to deal with new doctors every two years as we moved. Of course the medical community is just now learning that Fibro is a real condition, not a mental problem. The military doctors are really not up to current treatments for Fibro. Give you some 800mg Motrin ( also known as Ranger Candy in the Military Community) and an antidepressant send you on your way. Now the new Motrin is Neurontin. It is an ok medication but to many bad side effects. I would rather deal with the pain than the long term effects from that medication. I am currently on Tramadol and it is wonderful I am able to function, do daily tasks, do things with my family. My big problem now is my condition has gotten worse and I am needing further treatment. I suggest using a hot tub for relaxing the body, do stretching while in the hot tub. I also do swimming that helps a great deal. I do a small amount of yoga. There are stretching moves for Fibro patients that does help. We with Fibro live with the double edged swords. We need to exercise but it hurts to exercise. Go on the National Fibromyalgia Association site and put in where you live. They have lists with doctors that you may be able to use. Contact the local Women's Clinics as well. I sure hope you have luck getting the help you need. I am here if you need to talk. SaS

[Princesita]

Hey,
I know how you feel. They all think that it's all in your head, that you maximaze your pain and that you are just tired 'cause you do so much during the day; but reality es that maybe you do a lot 'cause you want to feel "normal", you know what I mean?
When i was diagnosed i told myself that i wouldn´t let the disease control my life and that I would control it instead but is soooo hard; Every mont I have new symptoms, therefore, more pills to take, and I´m so sick of ti.
I mean, come on!! It's not fair! and besides that, not many people actually understands what we are going through and therefore they are not supportive. I mean, this morning i was just talking to my dad that I may start going to a meditation group, 'cause the pain and the situation is going really bad, almost unbearable, and he just doesn't understand it. He told me that I should'nt be stressed at these time (I'm from Argentina where right now is Summer so I don't have classes) and that If i was stressed I should do less things. Not really supportive, huh.
These two years have taught me a few things: 1). You should go to a reumathologisth (I don't know how to spell it correctly). They are the best trained doctors to deal with Fibro; 2). You will feel like you are alone a LOT and if you are lucky you will see that there are some friends or family that even though they don't understand what is happenning, will be there for you; 3). Eventually you will have a breakdown. I don't know when though (I haven't had it yet, but I know that in due time it will happen); 4). And never forget that you are a WARRIOR. Yes, you will have bad and crappy days, but then you will rise again. RINASCE PIU GLORIOSA (and it will rise again)

[txsasmom57]

Hey P in Argentina

Bless your heart. You are to young to think you are going to break down. Do not let Fibro control you. You need to control it. Go out and do things. Even if you can only do little things each time. Go and do.You need to keep moving your body and mind. My daughter is a college student and suffers with Fibro as well. She enjoys going to Zumba classes. She cannot always keep up but it is fun, she is around other people. That helps a great deal. Surround yourself with positive people and friends. And if you ever need to talk/vent I will always be here. I have found that one of the best things to help me to relax my body and ease my pain some is to swim. Being in the pool relaxes the muscles and you can move them like you need to do to keep them from getting stiff on you. A hot tub can also be very beneficial. You can lay in a bathtub in warm water and move your legs and arms to ease the tension in the muscles as well. It can help you sleep better. I do limited yoga stretching as well. Just do not stop moving. My daughter and I just started volunteering at a Children's Museum . It is fantastic to work with the kids. We laugh and get so much pleasure. There is a new amusement park here in San Antonio,TX that was built for special needs people. It is called Morgans Wonderland ( you can look them up on line). We are looking in to giving a few hours there soon. You said you are not in classes right now. Are you in college? What are you studying? Again my friend, I will be here to chat whenever you need. I understand how it is to tell family or friends I hurt today. They do not fully understand. My family tries. I think sometimes it isn't they do not believe I hurt but it makes them feel sad when I say I hurt. I find writing to support support groups or even in a journal helps. That way I am not telling them how I am really feeling. But, I am a person use to taking care of everyone else and being the one that fixes everyone and everything so I tend to take care of their feelings over mine. That is just who I am. HA! I hope to chat with you again soon.
Have A Pain Free Day, txsasmom

[Princesita]

Hey T,
You know? When I was first diagnosed I told myself that I wouldn't let the Fibro run my life, that I was the master of my fate (like the poem from Invictus says); it's just that the pain has been increasing and I have been feeling so bad lately that I just don't know nothing anymore.
I mean, I know this is just a relapse and in due time it will pass and I'll see the clear sky again; I guess I just needed to vent for a little while. I really can't talk to my family or friends, 'cause as you said, they don't fully understand and it feels so wrong to tell them that I feel like crapp every day, you know? So I just smile and don't answer.
I do a lot of things, although Í'm more like a bookworm than a sport girl. I used to dance a lot when I was younger and to do scuba dive (which I do when I'm at the beach. I live in a city). I tried doing yoga but it was reaaaaally boring for me and the acquagym made the pain worse. So I resort to Meditation, and it helps, somewhat.
But I do a lot of things that I like. I really do love to read and to play strategy games. Whenever there is a concert that I'd like to go, I go. I mean, if I had to look to the positive points of the Fibro is that I learnt that Life is for Living it; that we have to do things that we like, besides our obligations and responsabilites.
Yeahp, I'm in college. I'm a senior in Political Science, so I'm graduating at July 2012. My specialization is in International Security, so I have studies in National Defense (here in Argentina) and I'll be going to study to the US after my graduation, to continue with my education.
Anyway,
Thanks for just being there,
Hope to hear from you soon, and If any of you need anything, I'm here

[txsasmom57]

Hi P
I understand the stress that comes with a flare up. Depending on what is going on in my life is how my pain is. If things are going along "normal" my pain is usually under control. If I have a lot of things going on, extra stress from something I can pretty much guarantee I am going to have a big flare up. If the weather has a big change I get a flare up. So whenever I have a light pain day I feel blessed. Once in a while I get out of bed and actually have several hours with no pain. I do not say anything to jinx it. I just enjoy it while it lasts. Our weather out here in Texas has been unusual this year. Had extreme cold ( for Texas weather ), ice and some snow. Our temps dipped down to single digit for over two weeks. This caused me a severe flare. I was in my recliner chair with blankets sitting by the fireplace. I am thankful my daughter lives here ( she is a college student ) and is able to do things for me. Both of my kids are home and are good to help me out whenever I get in a flare. My husband is good to bring dinner home so no cooking is needed.
My recent visit to see the Rheumatologist was a total bust. She put me in to a group of others that suffer with Fibro. My treatment is to sit on a chair in this group circle and talk about how I feel about having Fibro and my pain. There was no help on treatment. It is just a group whining session. I mean, discussion session. Yes, we are entitled to whine about our pain. But to be put in a group like this is not what I was searching for. I was searching for treatment of my pain. We can all talk until we are blue in the face but that does nothing for the pain. Some times it can cause undo stress and cause more pain. Don't you think? So, I guess I will just continue with my primary provider and keep doing what I have been doing. Maybe there will be a new break thru on treatments and we can all start to live a less painful life. I hope school is going well for you. Drop me a note whenever you have time. I am always here.