Then you have an extremely nice PCP doc, Sandi. I've had offices insist I pay even when I was dead broke and desperately needed the notes. And that was with a crummy nurse practitioner who always looked and typed into her laptop as she talked to you, leaving you to feel that she wanted to be done with you and your notes ASAP.
Hey, go for it, bomb the pain doctor with your notes if she keeps messing around. I doubt she'd even look at them, though.
I bombed her with them a week before my appointment on Tuesday and her nurses assistant said she hadn’t looked at them! Go figure. I’ve already did 2 reviews of her online. Maybe it’ll stop someone from seeing her!
Sandy,
I can't reply directly under your most recent posting because the reply button isn't there but i wanted to add that this action on your pain doctor's part clearly shows how interested she is in treating you - NOT! You would think she would at least read your most recent notes. She apparently doesn't "do" paperwork. Kind of hard to get much from a doctor who is so slipshod, IMHO.
Called there again today- on hold for 13 minutes - still hasn’t filled out the paperwork. Her nursing asst. said maybe she fill them out this weekend! Yeah, right. I’m done with her.
I called a chiropractor who works with chronic pain patients AND Fibro, as well as ADHD clients. I saw her everyday for the past 3 days. I was really impressed with the thorough 2 1/2 hour exam, listening to my history and even asking me if I’ve ever had a brain MRI. Said I’ve had 2, one in 2004 & 2008 and brought her the notes. She is concerned that it was noted that there was a small marking in the pons area, which could be some of the problem. She said it could have been caused by an injury to my brain (2 car accidents) or a ministroke at sometime. She wants another MRI to see if there’s been a change in 4 years. I like her honesty - she can’t cure me but she can make my life better and keep my pain levels down and my body as flexible as possible. I know many don’t have faith in chiropractors, but I’m going to do everything I can to keep working, enjoy my life and keep smiling. P.S. - I did email my PCP and asked her to fill out my papers. She wholeheartedly agreed to do so.
I feel for you Sandi. Though I am fairly new to my fibro diagnosis I too have dealt with some rather crappy doctors along the way before I was diagnosed. I refer to my old neurologist as my "Nazi doctor" after all the pain she put me through and the absolute worst bedside manner that I have ever experienced or heard of.
At first it was thought that my diagnosis was MS. I had to undergo a spinal tap that absolutely the most grueling torturous thing I have ever endured and I have had 3 children with complications in all my labors. She screamed at me the whole entire time because I was screaming because the numbing agent she used didn't work one bit, and she poked the needle into my spine at least 20 times before she got the fluid. I couldn't walk for days and I shook just from the sheer torture of it all for at least 2 days.
That and I had a EMG which she didn't even explain to me at all and it's basically a test where they use a tazer thing and shock you over and over and stick needles in you over and over..and the whole while she screamed and yelled at me for being unable to sit still as well, As soon as I left that appointment I collapsed in the driveway on my way to my car. I didn't know whether to laugh or cry afterward cause the whole thing was so ridiculous and could have been avoided had she just told me what she was doing and what to expect.
Throughout it all I was put on several different meds and told that all these different type of depression meds were going to somehow take my pain away or make it tolerable. I keep telling doctors that I am super sensitive to anti depressents and they give me psycotic thoughts, but they think it's the cure for everything. I get night terrors where I wake up hitting my spouse and I don't know how any of it is supposed to help depression.
I wish that doctors would look at it from a different approach. How can you not be depressed and down in the dirt when your body is hurting everywhere? If they could manage the pain I would think the depression would subside because you would be able to function better.
Im glad I finally have a diagnosis, but reading alot of these blogs is just showing me that what I feared all along and through my experience..it is damn hard to find someone that can treat this and who understands this disorder enough to be qualified to help us.
Im sorry for your experience..Im sorry for all of our experiences. Why should we have to be our own doctors? This is all so frustrating. I wish I had some advice to offer that would be some reassurance, but I don't feel good taking all these damn antidepressants and I don't want to waste my time and money talking to shrinks about my past life. I want some real help and some real relief so I/we can live our lives to the best of our ability.
ye I think we need to group together and take so,e direct action to change things and I think the only way to do that is to lobby the people who have power over doctors. So leading doctors, we need one in this group, someone who has fibromyalgia or whose wife has fibromyalgia and a politician. From twitter I realize that there are a lot of groups in the UK, here in Oz and I’m sure in USA. We need to find someone in this group, not me but someone who has the energy to lead us and bring us together with other groups. This is badly needed other wise nothing will change and doctors will continue to abuse us. you’re right we shouldn’t have to be our own doctors but really that is the truth of the matter. Anyone prepared to take up the challenge, it couldn’t not be more badly needed.Barb
I'm so glad your PCP will help you! Meanwhile, your pain mgmt doc makes me sick. She shouldn't be treating people since she has no empathy for them or their plight.
Not knowing what the pons area of the brain was for, I looked it up and found this: The pons serves as a communications and coordination center between the two hemispheres of the brain.
Okay then it sounds like you might experience some difficulties in those areas if there is something there, which sounds like it could possibly be fibro related but I'm no doc so let's see what they have to say. No wait, I think I'm misreading the meaning. I really don't know what could be affected. I hope everything is as it should be there, Sandi.
I'm glad you've fund someone you feel good with and can trust. Hopefully she'll help you to decrease the pain. If so, please let us know ASAP!!! Hoping it works out really well for you, Sandi. You've really been through the wringer recently.
Hugs,
Petunia
So agree with you, Barb. Getting an advocate or lobbyist to encourage better care for those diagnosed is a great idea, if only it could happen. In the US with plans for a nationwide healthcare program in the forecast, I think this would take a back seat. Think ill write a letter to the National Chapter or whatever it’s called. Don’t think I have the energy right now to do much more. What we need is a politician or movie star be a spokesperson and get the news out of how awful and long it can take for us to get proper healthcare. I think you’re on to something, Barb!
Yes Sandi, but it needs to be global. Twitter tells us just how many people there are like us all over the world. A movie star would be great. One of our members must know someone. I think it’s not a matter of money but attitude. I see the difference with the attitude of doctors to me between visiting a doctor about my fibro and visiting a doctor about a non fibro condition. WE need a flagship. Someone who is easily recognizable to the public that includes doctors. If none of us know anyone maybe we need to pick someone and write to them,just a thought,but I think action is needed. barb
Angel
Can Bens Friends select one and write and ask them to represent us loudly. barb
yes, We can do it .No time like the present. Who knows how long we’ve got, but everyday is a day too long. A letter to a noteable person, if we do nothing then nothing happens. I’ve been on twitter asking folk for help. We must try to change this situation it’s not good enough to just complain. Action is needed.
I love this idea. People who suffer from it who have public attention would be great advocates to promote awareness and treatment of the illness.
i had no idea Sinead O'Connor has it. Interesting how even the rich and famous retire once they're stricken, which means even they, with all of their money and connections, can't get adequate pain or fatigue relief.
Please let us know if you hear back from Susan.
I have tweeted Dr Paul Christo a pain specialist see how I go can only ask.Barb
Just read that Susan Flannery is retiring from the show. Her last day is Nov. 26th. Maybe after she gets some must needed rest, she’ll want to help get the word out. Kudo’s for a great idea! Every single person on the site are so awesome. I’m saying it early - I am so thankful that I found you, my FibroFriends!!! Bring on that pumpkin pie 
Just an update… I called Dr. Hypocrite’s office today and was told by her nurse that they can’t send out the form because they don’t have a release from me to do so! REALLY??? I brought the firm in and made the request, I sat there and asked her to quit writing on her return to work form and instead just check the boxes and sign the forms I brought a week before! I am just amazed at her childish games and am definitely going to tell her so. So a release was faxed to me at work and I sent it back. She can’t say she couldn’t send it because she didn’t have postage because I put a stamp on the envelope!
I’ve been searching and asking the doctor who treats my back today and she gave me 2 names. Gotta keep on truckin’!
I’ll let you know. Thanks for the encouraging words. Have a great thanksgiving too!
Glad to hear that you have such a good Chiropractor, when you find one this good, hang on for dear life, they will keep you on your feet! Sounds like you PCP is a good one too! Until you find a pain Dr and Rheum that are as good as these two, just stick to them if you can! So glad to hear you do have some good and REASONABLE Drs on you side! Perhaps your new DC can point you in the direction of a Pain Management and Rheumatologist worthy of caring for you!
Good luck girlfriend, you are on the way!
Thanks SK. Doctor I saw today did give me 2 names to check out. She said that I should interview them like I was hiring them, as they are working for me as I’m paying them. Never thought of it that way, but I like it! I’m glad she’s on my side and one of her nurses came and talked to me, as she has Fibro and gave me some hints about who is good and who isn’t. Welcomed me to come and talk anytime. That sure makes one feel better. Chiro didn’t like the looks of my brain scans from 2004 & 2006 - if I’m not getting better after a few more sessions, she’s going to order another. I hope I’m on my way to some sleep! Oh joy.
Sandi,
Sounds like you have a very promising start on getting a new, good rheumy. What a good find in your nurse! Who better to know than a fellow fibroite in the medical field?
I hope you don't need another brain scan as that sounds serious. But I'm kind of confused, Sandi - do Chiropractors order brain scans? Or do you have one who's also a doctor? The one I went to had everyone call him Doctor Dan and was always hawking his vitamins. Trying to picture him ordering brain scans is a bit mind boggling.
Oh, and I wish some seriously good sleep to come your way. I can't imagine dealing with fibro without a decent night's sleep.
Wishing you a good night,
Petunia
The chiropractor I was seeing in 2006-2007 ordered a neck MRI and found the herniated discs in my neck. If it weren’t for him who knows how much longer I would have went around that way.
I’m going to go straight to a neurologist because they seem to be the ones around my area who will care for a Fibro patient. I guess the WItch Dictir was right when she said that rheumies will diagnose but they don’t want to treat you. Strange, but it seems like anything medical isn’t straight-laced. Tried the Trazadone last night and I did sleep fir about 3 hours and had some vivid dreams. Maybe if I take it for awhile it’ll get better. I was just so awake for loooooong periods of time between sleep. So today I feel like a zombie but am glad for last day of work today until Monday! Happy Thanksgiving!
Angel - I feel for you and the not sleeping. I really feel if I could get my sleep problem in check my pain would go down drastically!