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Neurologist just told me Fibromyalgia is not real
2 Replies
Kev mesaaz - September 25

Hello all - first time on site and very frustrated with my Dr. Was hoping for help. I just came from my neurologist for my one year follow up after a multi-level neck fusion due to multiple fractures and disc dissertation. This was just one of many surgeries I received after being hit head on by a Semi Truck and being wrapped around a utility pole. I had previously gone to my PCP five months earlier, as I have been suffering from pain throughout my whole body, very poor sleep, restless legs, headaches, muscle pain … and still just hurting everywhere, almost a year and half after our accident. My PCP referred me to a Rheumatologist and put down a diagnosis of Fibromyalgia on the referral. There were four doctors listed on the referral, and three of them turned me down as soon as they heard the diagnosis of Fibromyalgia. The forth Dr. is not taking new patients so I am on a waiting list. I had no idea what fibromyalgia was, so I did a little research and saw it was associated with neurology, so I figured I would let my Neuro Dr. know what I have been experiencing as well. As soon as he saw Fibromyalgia on the referral he started shaking his head and said “why she write that? Fibromyalgia is not real, it doesn't exist, you probably have arthritis because of your age”. (I am 52 yrs old and have never had any form of anything prior to the accident). He then said he would inform my PCP “I do not have Fibromyalgia” and would refer me to a different Rheumatologist. (My office visit was a total of six minutes with him).

To make a long story short, I looked up the Rheumatologist he referred me too and low and behold, there were numerous negative reviews on her and many stating how she felt fibromyalgia was not real, and it didn't exist either. At this point I don’t know where to turn. It seems this is a taboo diagnosis, and trying to find a Doctor who specializes in it is becoming impossible. I am now searching our area for a new Dr. All I know is my life is horrible and every day is uncertain. I never know if I will wake up so exhausted, or how much pain I will have. Will I able to walk or will I be in bed all day. What a roller coaster I’m ridding. From reading some of these post I see I am not alone. They say” there is comfort in numbers”. I sure hope so.

Does anyone know of a good Dr or any resources in the Phoenix, Scottsdale, Mesa, Tempe, Arizona Area? Any help would be much appreciated.

 

KIMELISA - January 3

Hey there, I don't know if you have gotten much help since Sept 2014 with your diagnosis of Fibromyalgia. Let me tell you this, I went to many doctors. I know my body so well, I just knew they were missing the problem. These days doctors don't want to spend much time with you. If you have more than a cold or stumped toe, they are ready to send you on out the door. For years I was told I had depression. I went down that road thinking I was losing my mind, the way every doctor treated me was unbelievable. I didn't stop until I was satisfied with what I was hearing from about ten or so doctors. Every doctor I saw was telling me it was in my head, no such thing in Fibromyalgia. I am not a stupid person for one, I take what I hear with a grain of salt now until I am sure the doctor and I are on the same page. I practiced dental hygiene for 25 years and one day I couldn't get out of the bed, literally. Again I went to a doctor that was shrugging me off and I lost it right there in his office. I was crying, raising my voice and told him I was sick of being put off. I wasn't leaving that office until he pointed me in the direction I needed to be headed. I told him if he didn't know about Fibromyalgia then send me to someone who did know. I then was told to see a neurologist, I took my health into my own hands, I had too. I wanted to make sure I didn't have Lupus or MS so I ask this doctor to just do the test and rule those out. I had an MRI done that afternoon, test came back I was free and clear of Lupus and MS. I was told by the neurologist that Fibromyalgia was a trash can illness, didn't exist. I said alright and left his office and never went back to him. I knew I had it. I know my body. The good thing about all these trips to doctors, flipping out in their office, guess what I did by doing that ? I created a paper trail of all the doctors I had seen, telling me I was insane yada, yada, yada. I am an educated person and I wasn't taking their diagnosis lightly. My mother died when I was an early teen at the age of 50 from Lymphoma Cancer and I don't trust doctors. My mother stayed in a doctors office telling them she was sick. Well let's say they found she had cancer at the last minute and gave her a death sentence of she had six months to live. So my advice is don't give up, or into the doctors that tell you different. Yes, Fibromyalgia is very very real and it does exist. I am 49years old and I have been on disability since 2005. I was one of the first few that got accepted for total disability for Fibromyalgia, Chronic Fatigue and Chronic Pain. As of today, I still see a doctor each month now for my pain meds, but I still have to be in control over my body. I have to go into my doctor and say ok, this is what we are going to do...I have been doing research tonight and that is what lead me to your post here. I am now thinking I need blood work to see if my cortisol level is right. I think I may have Cushing's syndrome now along with Fibro so I will once more keep on until the test is done and my mind is free of that thought. My advise to you is to keep on seeing different doctors until you find one that you can level with ...my concern is with myself, I may have cancer like my mother and not find out until i have 6 months left to live...so stay on top of them. I hope I could help you out some, even though sometimes you have to take charge to see if your treated with the right diagnosis these days. I live in Alabama, we have a great hospital here and that is also the school I attended for my dental degree. U.A.B. University At Birmingham is a great place but I am sure there has got to be a doctor around where you live that can properly help you to find a treatment you need. Everyone is different so they have to treat you with your symptoms to make life a little easier to live it. No cure for Fibromyalgia as of today, but I hope soon our great hospital here with find a cure. hey have already found treatment for diabetics and keeping my fingers crossed for all of us that have this illness. I wouldn't wish it on my worst enemy. Take care,KimElisa

 

Bertha52 - January 8

I hope you have gotten a new doctor and help with your pain by now. However, if you have not, I came across the fact that you have a Fibromyalgia Center in Phoenix:

16601 N 40th St
Ste 227
Phoenix, AZ 85032
Phone number (602) 595-6277
Business website azfibrocenters.com

I, too, have fibromyalgia and live in the Rochester NY area. I have a rheumatologist who diagnosed fibro - only after seeing several doctors! There are medications and other ways to get relief from the pain. Good luck and let me know how you have done these past several months.

 

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