Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

puppymom06
This past Autumn my Rheumy referred me to a Neurologist for trigger point injections. The Neuro said at the time that the knots in my back had been let go far to long and what I really needed was Botox injections. Needless to say my insurance will not cover these. He also asked me where I hurt the worst. I pointed to the area of my thoracic spine where I have always complained of the most pain,. It is so bad now that when I move other people who are 3 feet or more away can hear the back grinding and cracking all on its own. The Neuro said to me, "Well why haven't they ever done an imaging study on your thoracic spine? It is the only area that has not been imaged? " He also told me that he did not think calling my issue Fibromyalgia was helping me get the care that I needed, but was reluctant to help further when my insurance rejected both of his options for care.
So, after the pain got so bad at the first of this year, and the Rheumy was only prescribing the same drug to which I have already had a reaction 4 OTHER TIMES I went to my PCP for help. She prescribed Mobic, assuring me that even though I cannot take Advil due to an allergic reaction I would be fine on the Mobic. If anyone ever tells you this, they are just flat out wrong. After being migraine free for 8 months I started having them on a weekly basis 2 weeks after starting the Mobic. When I went to get the script filled again and the Pharmacy refused to fill it due to my allergic reaction.
I then had to wait 3 weeks for a doctors appointment before she could write me another script! So I went in yesterday and she told me that many of the doctors I had seen had labled me a "whiner" and that I did not do well on medication so I should just prepare to be in pain the rest of my life and spend my non-work time hanging out with my dogs. This was after her giving me a mini-psych exam to determine the level of stress that I am under.
Ladies and Gents, I totally lost my freakin cool. I said,"How the h_ll am I supposed to walk my dogs when I can barely stand by the end of the day?? My spine hurts in the same spot it has hurt for more than FIVE years. Mr. Neuro, who won't treat me, at least pointed out that none of you have ever even looked at that part of my spine with an imaging study!" PCP Doc starts rummaging through my file, which BTW, is still a paper file at this practice and obviously very incomplete. "We have been very diligent in pursuing many avenues for your diagnosis,"said the doc. To which I replied, "OK, please show me the imaging study of my thoracic spine." After more rummaging she said, "Well there does not appear to be one other than the Xrays taken by the Rheumy in 2011. But Xrays are usually not effective for spines unless one suspects a fracture . . ." To which I responded, "Which is exactly why I stopped seeing that Rheumy, she runs needless tests with little clinical value. So I could have 3 or 4 slipped discs or a cord impingement and it would not show up on the xrays, Meanwhile you have sent me to 7 neurologists, two teaching hospitals and run up thousands in medical bills thinking I have MS or ALS but NOBODY looked at the place where I keep saying it is hurting. Do ya THINK I could possibly get an MRI of just the part that hurts??"
She is supposedly getting the precert taken care of with my insurance, but scheduled no follow up appointment and kept mumbling something about pain management referral. I should think they would run the MRI and then decide where to send me based on results? Hubby is LIVID, as he and I both thought this testing has all been exhausted before then sent me all over looking for every known aliment under the sun. He wants me to start fresh with a new PCP as soon as possible. Thoughts? Suggestions? And yes, I may have been a bit rude, but when she suggested "DOg therapy" like I am some sort of fragile state it really burned my biscuits, especially since the Therapist that I did see found me to be exercising approrpirate coping tools and handling things very well. That report also seems to have been lost in the shuffle . .
So, after the pain got so bad at the first of this year, and the Rheumy was only prescribing the same drug to which I have already had a reaction 4 OTHER TIMES I went to my PCP for help. She prescribed Mobic, assuring me that even though I cannot take Advil due to an allergic reaction I would be fine on the Mobic. If anyone ever tells you this, they are just flat out wrong. After being migraine free for 8 months I started having them on a weekly basis 2 weeks after starting the Mobic. When I went to get the script filled again and the Pharmacy refused to fill it due to my allergic reaction.
I then had to wait 3 weeks for a doctors appointment before she could write me another script! So I went in yesterday and she told me that many of the doctors I had seen had labled me a "whiner" and that I did not do well on medication so I should just prepare to be in pain the rest of my life and spend my non-work time hanging out with my dogs. This was after her giving me a mini-psych exam to determine the level of stress that I am under.
Ladies and Gents, I totally lost my freakin cool. I said,"How the h_ll am I supposed to walk my dogs when I can barely stand by the end of the day?? My spine hurts in the same spot it has hurt for more than FIVE years. Mr. Neuro, who won't treat me, at least pointed out that none of you have ever even looked at that part of my spine with an imaging study!" PCP Doc starts rummaging through my file, which BTW, is still a paper file at this practice and obviously very incomplete. "We have been very diligent in pursuing many avenues for your diagnosis,"said the doc. To which I replied, "OK, please show me the imaging study of my thoracic spine." After more rummaging she said, "Well there does not appear to be one other than the Xrays taken by the Rheumy in 2011. But Xrays are usually not effective for spines unless one suspects a fracture . . ." To which I responded, "Which is exactly why I stopped seeing that Rheumy, she runs needless tests with little clinical value. So I could have 3 or 4 slipped discs or a cord impingement and it would not show up on the xrays, Meanwhile you have sent me to 7 neurologists, two teaching hospitals and run up thousands in medical bills thinking I have MS or ALS but NOBODY looked at the place where I keep saying it is hurting. Do ya THINK I could possibly get an MRI of just the part that hurts??"
She is supposedly getting the precert taken care of with my insurance, but scheduled no follow up appointment and kept mumbling something about pain management referral. I should think they would run the MRI and then decide where to send me based on results? Hubby is LIVID, as he and I both thought this testing has all been exhausted before then sent me all over looking for every known aliment under the sun. He wants me to start fresh with a new PCP as soon as possible. Thoughts? Suggestions? And yes, I may have been a bit rude, but when she suggested "DOg therapy" like I am some sort of fragile state it really burned my biscuits, especially since the Therapist that I did see found me to be exercising approrpirate coping tools and handling things very well. That report also seems to have been lost in the shuffle . .
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My heart goes out to you! I completely understand your frustrations. I don't have any advice for you other than what you already know: be your own advocate. Do not let doctors ignore you, belittle you, or insist on treatments you know aren't working. Fight with your insurance co. for that thoracic study.
I learned my need to advocate for myself July 2013. I woke up one morning and the entire right side of my body was shaking and weak. I went to Urgicare and they sent me to the ER. No fewer than 8 different people, nurses, doctors, etc. asked me what medications I was on. They did a CT scan of my head and said they had no idea what was wrong. Follow up with my PCP--he asks about meds and then says that my problem is just anxiety. I come back in a few days--everything's worse--again, he says anxiety.
Five minutes with Google and I discover that the #1 side effect of the medication that I was taking (doxepin is what it's called) is this numbness and tingling in the limbs. I called the doctor that prescribed and then stopped taking it and presto! All that scary numbness and weakness is gone.
We know our bodies. We know when something's wrong. When a doctor truly disappoints us, we can (and should) find new ones. Maybe a new doctor? A second opinion, a fresh set of eyes? It can be so frustrating to start over--but I think I'm with your hubby.
I hope you're on the way to getting things properly looked at and treated!
Part of my issue may be a regional communication problem. I am from the south, where I am considered vivacious and energetic in personality. And I have a bit of a drawl. Now I live in the North and I am constantly called, "stressed out" and people keep telling me I have a "whiney tone" to my voice -- especially these doctor types. So I went to see mental health, and they gave me a clean bill but these PCP's keep trying to play Shrink and DX me with something or think calling me a "whiner" is going to stop me from getting help.
I think if you are a woman and in pain we are just subject to all sorts of stereotyping. I don't know what to do about it. Is there some method for pain patients to deal with there doctors? Can we get doctors to study their own predjudices. I don't know if it helps to know you are not alone. Lots of us have gone through versions of the same sort of attitudes.
I would say an MRI is definitely in order.
As AnnNY said. You are not alone. I've experienced similar things in my years of seeing different doctors.
Some have been fantastic and some are friggin' idiots. I've walked out of places in tears and cussed. stupid, effin' doctor is my usual sentiment.
I understand the anger and frustration.
My current Rheumy guy is a PA. And he's been pretty patient with me and I with him as he's made mistakes too but he's ok overall and listens and takes care of me so I've stuck with him for a few years now.
Oh and the accent thing. I so understand. Some people are ignorant. I'm from the UK and live in USA and still have my English accent after living here for over 20 yrs. It takes a while for the person to get past that. It's like they aren't listening to WHAT I'm saying but HOW I'm saying it or they don't understand what I have said and I have to explain and repeat.
I speak and pronounce clearly but I suppose it's my pronunciation is different. it's those Vowels! Lol
At times I may seem excitable, talk a little fast at times and the other day I was explaining something to someone I hardly know and she told me to calm down as she thought I was anxious. Huh? What? I wasn't stressed or anxious at that moment. Weird. It actually bugged me that she said that to me. I told her that I was fine. I suppose it was her interpretation. With someone who knows me better they would know its just how I am.
Anyway hopefully you will find the right physician who will listen to you and not get distracted by your accent and help you.
Good luck
" Well there does not appear to be one other than the Xrays taken by the Rheumy in 2011. But Xrays are usually not effective for spines unless one suspects a fracture . . ." To which I responded, "Which is exactly why I stopped seeing that Rheumy, she runs needless tests with little clinical value. So I could have 3 or 4 slipped discs or a cord impingement and it would not show up on the xrays, Meanwhile you have sent me to 7 neurologists, two teaching hospitals and run up thousands in medical bills thinking I have MS or ALS but NOBODY looked at the place where I keep saying it is hurting. Do ya THINK I could possibly get an MRI of just the part that hurts??"
Hooray for you!!!! Love it! They couldn't possibly be WRONG and to get ANY point across... you have to directly point it out (just like you did.) Its infuriating when you are trying to explain - they aren't listening - AND THEN>> they notice they they have never done the right tests! They scoot right past that (they KNOW they messed up) but you have been a "whiner" all the time. They dont say sorry about anything.
XXXXXXXXXXXOOOOOOOOOOO's A lawyer can get all your charts too! I was shocked & surprised when I saw mine!!!! Best of Luck & prayers for you!
As far as complaining about the dr, you can make a complaint, but nothing will come of it. It doesn't raise to the level of malpractice.
When doctors aren't helping it's time to fire them.
*(sigh*
Okay, just assume this is filled with a lot of expletives.
1. Get copies of all your records from every doctor you've ever seen.
2. Get a new PCP and ask the neuro for a referral if necessary since only the neuro seems to be asking the intelligent questions
3. Give yourself a big hug
4. I am from the North and live in the SOuth and have a slight twang I picked up from my Dad's fam (APpalachian hill folk northern variety) and my mom's Polish accent can creep into my speech under stress---so docs will occasionally think I am completely impossible to understand no matter *where* I've lived, except NW PA! And yes, to some "Yankee" ears, certain Southern regional accents can seem "whiney"---but geez lou-eez, there's Maine accents that make my ears hurt, so tell 'em off about that, would ya? (Or better yet, tell them they sound "hurried and impatient"---LOL.)
5. Back to number 3 and keep slugging:-)
I know it's a lot of work to track down and call each therapist/doc/etc. yourself---but that's how we manage the monster.
Good luck, and big purrs,
Leo
This all started when I moved up here and had my records transferred. My doc back home had seen me for over ten years, and at the first appointment here I found out that I was supposedly being treated for a myriad of health problems that I had no idea about. There was a woman who went to the same doc back home who had almost the exact same name as me, except her middle initial was different and she was about 30 years older than I am (her kids actually went to the same high school as I did and graduated several years ahead of me). We would see each other around town and she would joke that the doctor tried to prescribe my birth control pills to her again or I would mention they tried to treat me for her high blood pressure again, because on several occasions they would start our visit by asking us questions from the other person's file! Now I am not laughing as I wonder if parts of her file are mixed in with mine or they just flat out transferred the wrong records and no one has looked at the birthdate on them!