Fibromyalgia
Having been involved in researching different medical conditions for nearly 8 years we thought it would be interesting and important to find out how things have changed over the years. In particular we were concerned about the ease or difficulty in getting diagnosed with fibromyalgia.
Our research painted a very unhappy picture. In many cases a diagnosis of Fibromyalgia took years. In some very worrying cases a number healthcare professionals refused to accept the existence of the Fibro. So for many people fibro was an invisible illness, both medically and socially.
So our main interest was to what extent has this situation changed as regards to people suffering from fibro. As we run a Facebook group providing support for people with fibro and Chronic Fatigue Syndrome we decided to ask our members that very simple question “How easy was it to get diagnosed with Fibromyalgia?”. To check the page out please go to https://www.facebook.com/FibromyalgiaandCFSTalk
I have to say the results were over whelming with over 150 responses in less than 12 hours. Here are a few of the responses. One of our members related:
“Oh it was hard…….doctors didn’t believe me….I had an op on my hip, which led to nothing, 15yrs approx later. ( maybe more) .diagnosed with m.e & fibromyalgia”
While another commented:
“I was fortunate… My neighbor has fibro and I was experiencing all the same aches,pains, symptoms as her, she urged me to go to her rheumatologist. That’s when I was officially diagnosed. It was a long road prior to that… Going from doctor to doctor, repeated blood work…tests tests and more tests…. All I heard was your fine… There’s nothing wrong. Thank goodness for my neighbor who helped me!!!”
And maybe there are still issues with the medical profession. As one reader shared:
“Even now doctors donot believe in Fibromyalgia or dont know much about it…A very senior doctor told me its another fashionable tag given to arthritis…Mostly I did my research on net. ..Recently i went to a rheumatoloy clinin who agreed it was either fibro or CFS..Its frustratinf when people around you are so ill informed about your suffering and ill ness..”
But there are positive signs as one commenter said:
“I was lucky that I had a good family doc that knew the right specialists to send me to. I think he did his homework actually and when I started to get worse, he sent me to those specialists cuz I only had the waiting time to get in to see the specialist until I had a diagnosis. That was about a month.”
So it seems that while there are signs that it is getting easier to be diagnosed with fibromyalgia but the overall situation is still not great. The aim of this blog is to get your take on the issue. We would like you to answer that very simple question “How easy was it to get diagnosed with Fibromyalgia?”.
You may also want to consider some of the following questions as well:-
- Did you have problems with healthcare professionals in getting a diagnosis?
- How long did the diagnosis take?
- What tests were used to get your diagnosis?
Feel free to use the comments box to answer these questions and add any other opinions which you think may be of interest to other people with fibro. If you have any useful links please do include them.
bmblythe See more than one doctor and get a lawyer.
I went to doctors for years before I got a diagnosis. The symptoms started after the birth of my son in 1986. Depression, IBS, sinusitis, TMJ and pain. I was finally diagnosed in 2013. When I told my mother, she said, “I could have told you that, I have it too.” I couldn’t believe this was the first time she had ever mentioned it! I filed for SSDI in 2013, was finally awarded in 2016. It took 27 years to get diagnosed and 3.3 years to get SSDI. From the birth of my son, PTSD, auto accident, broken bones, house fire, death of loved ones (7 close relatives), it progressively got worse. I have had many MRIs, CTs, X-rays, blood tests, thyroid tests, sweat tests, RA test, MS test, bio-feed back, acupuncture, physical therapy, psychologists, group therapy, cortisone shots, meditation, sound and light therapy, infrared sauna therapy, water therapy, Gluten-free diet, Paleo diet, Restorative Yoga, and vitamins, supplements, medication after medication, there are a few things that ease the symptoms, but never complete relief. I have seen so many doctors, Primary Care Physician, Neurologist, Rheumatologist, Orthopedic, Naturopath, Psychiatrist, Chiropractor, Acupuncturist, Physical Therapist, Phycologist, Pain Management, Reiki, Shaman, Massage Therapist, Cranial Sacral, Occupational Therapist, phew, anyone else? So, what does help? Lots of management. I have to watch what I eat, what I do, what I say, what I think, because everything effects how I feel mentally and physically. I avoid, sugar, alcohol, gluten, spicy foods, perfumes, excessive temperature, stress, crowds, noise, bright light, dairy, and odors (that I know bother me). So, that means routine, fruits, vegetables, lean meat, nuts (no peanuts), seeds, beans, brown rice, quinoa, coconut milk, almond milk, gluten-free foods, dairy free foods, limited caffeine, mineral salt baths, infrared saunas, temperatures between 70 – 85 degrees, hats, sunglasses, restorative yoga, reiki, meditation, light hand weights, cymbalta, meloxicam, flexeril, norco, magnesium, calcium, probiotics, zyflamend, omega oils, essential oils, you get the idea. I try anything and everything to reduce the symptoms of fibromyalgia. I refer to Fibro as the umbrella. Because under that umbrella is, depression, anxiety, degenerative disc disease, arthritis, IBS, TMJ, PTSD, sinusitis, dry eyes, pain, numbness, rashes, sensitivity to light, odors, and sound. The doctors don’t know what to do. They can only treat the symptoms and hope that the treatment doesn’t cause more symptoms. I try to keep as organic, non-gmo, and holistic as possible. This is so, I can avoid any other reactions from medications. I was taking 8 at one time and now I am down to 4. Always looking for a solution. I am sure others with Fibro can relate.
I was actually diagnosed with IC and chronic fatigue first. My family dr did this but she did run blood test after test to no avail. “Nothing is wrong”. I simply said you’re wrong and we need to keep working on this so she recommended a Rhuemetolgist. I went to see him, while waiting for the appointment to come I began my own research and basically diagnosed myself. I went in he asked me what was going and I told him this is what is going on and these are my symptoms. I believe I have fibromyalgia. He did the “trigger point” areas test (which there are 19 not 18 now), looked at my blood tests and did a full body bone scan. I have no arthritis in my body expect the start of it in one knee. I had broke my ankle a year and a half before this – he told me that my bones were so good I would have had to fall really hard. He came back and said I was correct in “my diagnosis”. When then have worked on a treatment plan together which includes a pain center. All took approximately 3 month once diagnosed with the IC but overall time would have been before this – 2 years. (Any dr that says it’s a fancy name for arthritis or isn’t willing to do a bone scan knows absolutely nothing about Fibro)
I was fairly lucky; after speaking up about my pain and fatigue my diagnosis came pretty quickly after a battery of testing.
I had researched my symptoms and knew something was actually wrong with me, I just had to get past being afraid to speak up. Reading up on fibromyalgia makes harder to go to a doctor given the vast majority suffer from being turned away from their pain being “real” in the forms of disbelief all the way to full on bullying. I am fortunate to have a good doctor for now but we are moving soon and I fear having to go a new doctor’s office.
Im 29 yrs old past yr I been going to this doc in she refuses to think something is wrong with me im all way tired I get head aches in most
Be aware, symptoms is exactly the same for chronic Lyme Disease.. you can have been misdiagnosed, I was for years :'(
I found a physician that injects my fibromyalgia with phenol. What an amazing physician. He even wrote a book about it. My fibromyalgia is gone. What a miracle. Other patient’s with fibromyalgia fill his office, when I was talking to them they tell stories that they travel from around the country to get there for the injections. Its a miracle because my fibro was treated by so many ‘experts’ in fibro with medications, diet, physical therapy, acupuncture. His name is Dr. Scott Stoney and he is in Newport Beach California
I had a nerve test, EKG, MRI, blood work. 2 neurologist 2 Rheumatologist and 1pcp…because of the symptoms I have. They knew something else was going on…although a conclusion was not met…spondylitis, tethered chord, lupus were all laid on the table. Specialist diagnosed Fibro…pcp added bursitis to list of diagnosis
I diagnosed myself with Fibromyalgia after doing the two month long research.I have to admit that I am extremely grateful to God, because my PA was one of those people that will write you off as psychosomatic, if she couldn’t figure out what was actually wrong with you.I had way too many of the fibro symptoms, but the one that nearly drove me crazy was the CHRONIC FITUGUE.I couldn’t stay awake if my life depended on it.One day I walked into this lady office for a visit and shocked her.When she asked what could she help me with today, I gave her two sheets of papers.One had the full size photo chart of the skeleton with the eleven to eighteen trigger points and the other was a note that read,“You took an Hippocratic Oath that you will do your best to provide good medical service for your patients. Yet, you have known for the last seven years that I have Fibromyalgia and did not tell me.”Her exact words were, “You figured it out, oh my God, you figured it out.”Strangely enough she whole heartily agreed.She was one of those types of people that didn’t believe it fibromyalgia; yet, she told me that her own mother had it.Her own mother had it, but she couldn’t diagnose me.I wasted no time seeking a real M.D and think that I have hit the jack pot because not only does my new doctor understand fibromyalgia, but he has actually done the research.Now, I feel like I got the hook up.I would say to anyone that suffer in chronic pain, take the time that’s needed to do the research yourself.Don’t leave any stones upturned.
Elizabeth BrownI Hi. I found a physician that injects my fibromyalgia with phenol. What an amazing physician. He even wrote a book about it. My fibromyalgia is gone. What a miracle. Other patient’s with fibromyalgia fill his office, when I was talking to them they tell stories that they travel from around the country to get there for the injections. Its a miracle because my fibro was treated by so many ‘experts’ in fibro with medications, diet, physical therapy, acupuncture. His name is Dr. Scott Stoney and he is a physician in Newport Beach California.
I didn’t have any problem getting diagnosed. My doctor knew right
away it was fibromyalgia…But of course we still had to go threw all
the tests to rule them out. My problem is getting disability on board.
Basically they have said I am not ill enough with all of my conditions
but life will be challenging for me. Anyone have any ideas?
Hi. It took me 18 solid months before I was finally approved after having a fair hearing in front of a judge. I was initially denied but I had an atty who believed in me and was willing to take it all the way to the hearing. Then about 3-4 more months before the back pay came through. My advice? Don’t give up!! When I decided that I wouldn’t even hire myself for a job, I knew it was time to see it through all the way to the end. If your atty isn’t willing to stay with you, find a new atty!!
Try the Arthritis Foundation. Years ago, in Long Island they had many cases which were
denied but they followed thru and I think they eventually got disability. The Arthritis Foundation was in Melville, Long Island.
bmblythe phyllism47
I have to say that my care is much more complete up here in New York State, even on Medicaid, than when I was insured through my company in Florida….. I bow my head to the Medical People in New York…. Thanks for taking the extra mile.
I started being diagnosed with bursitis in my knees at 31… than impingement syndrome around 40….. my balance has been off forever, but was put off due to my hearing loss, the thinking that my equilibrium was off due to my deafness… 70% in my right ear and 30% in my left… I mean, I walked around corners like a was banking a curve in a car race, if you get my comparison,…. I suffered way too much, for way too long…. and as a courtesy… I think to write my drs. in florida who saw me regularly for 15 years… just so they know that they made a mistake and won’t put symptoms off so quickly, because they have a full waiting room…… Yeah… I’m a lil tickt about it all.
15 years ago I was diagnosed with RA, I think for lack of really knowing what was wrong. I was tested for Lyme disease, lupus etc…i never had a positive RA factor. I have taken all different kinds of meds over the years. I moved about a year ago for work and we finally got health insurance so I got established with a local GP to refer me to Rhuematologist. Went last week only only to be told he doesn’t think I have RA but Fibromyalgia. Really? Well it would explain EVERYTHING I have complained about for years. Now waiting to see what he says to do….
My symptoms and diagnose came actually from my Oncologist after getting my cancer stable I started to have various pains, fatigue, joint issues that seemed to get worse in 2009-2011. Different drugs were giving, scans blood test to make sure it wasn’t cancer, she listened and noted all my symptoms.. She narrowed it down to my immune system and said you have some autoimmune disorder, luckily I was at a University Research Hospital, she called over to Rheumatoloty and put me in the hands of a good friend. He reviewed her notes, got a history and narrowed down quickly to either Sjogren’s and Lupus or both. It took just 2 months with him and a trip to the eye doctor for Sjogren’s Syndrome was declared in the summer of 2011. I was still having other issues even after starting plaquenil and taking pain medicines, we knew some of the pain was due to the 10 surgeries, 33 chemo treatments, radiation for 2 years. Again more tests always having to rule out cancer it was confirmed to be fibromaylagia in 2012, from all the testing we knew I had the RF factor but had no symptoms, yeah that changed quickly this past April RA has came with a bang. Yet another drug has been added and for the first time since 2008 my pain is under-control for the moment, the steroids have given me great relief. although I could do without the side-effects of mouth sores but it sure beats the pain I had while trying to sleep and waking up feeling like I was the tackling dummy at football practice.
I’ve had pain for many, many yrs, not to mention tired, migraines…insomnia! I remember in high school extreme pain always…random though. I was told I had growing pains…I was 45 when a rheumatoid Dr said I have it. Finally an answer but no cure :'(
Took a couple of years. The doctor said it added up to fibro but he didn’t believe in it. Great doctor. I’ve not been too bad since. If I eat right and keep up with my exercise then I can keep it at bay. Yoga is really good too.
I HAVE HAD FIBROMYALGIA FOR ABOUT 28 YEARS.BACK THEN IT TOOK A LONG TIME TO
DIAGNOSE. I ATTENDED AN ARTHRITIS CLASS AND LEARNED ABOUT DISAESES IN THE ARTHRITIS FAMILY. EVERY DOCTOR THAT I WENT TO TOLD ME I NEEDED A PSYCHARIST.
FINALLY AFTER ALL THE TEST FOR CHRONIC FATIGUE SYNDROME,AND WHATEVER. THEY SUGGESTED I GO TO A RHUEMATOLIGIST AND THAT’S WHEN THEY FELT YOUR TRIGGER POINTS. THE ARTHRITIS FOUNDATION HAD A CLASS AND WE HAD BACK UP SUPPORT
THAT WE MEET ONCE A MONTH AND JUST TALKED ABOUT WHAT WAS GOING ON.
I started feeling pains in June/July of 2010 which I thought were the result of a foot injury in 2008. I went to my PCP in Aug of 2011 & she thought it might be fibro, she sent me to a rheumy & I was diagnosed in.Sept.
Sweet Heart: you need to count your blessing and name them one by one. There are people that have gone over forty five years of their life with Fibromyalgia. If you believe in God, you need to praise him for saving you a multitude of wasted years in bone pain. I won’t say lucky, I will say blessed.
I have 35 years old, 12 years ago I was diagnosed with arthritis, but I never took the medications because I was afraid of the effects. 6 months ago a new doctor, by tests, I was diagnosed with fibromyalgia … Now I do not know what is worse, because in Colombia this disease is not yet known, I feel like a mental patient who invents the pain, fatigue and malaise that this gives me. I tried three new drugs without the pain decreases and secondary effects are very strong. It’s good to have a place to say what I feel. Happy day to all!
I have gone thru lots of meds due to side effects. I also suffer from Avascular Necrosis (AVN), asthma, etc. and take lots of meds. I take Neurontin, Wellbutrin, n Lamictal for the Fibro. Some days they help, other days they don’t. There are still lots of drs who do not believe in Fibro and believe it’s all in our heads. If they could just live in my shoes for one wk they’d change their minds!
Whatever you do, DON’T LET THE TALK YOU INTO TAKING THAT LYRICA. That medication should be band from the United States. It had me reaching for stuff that was not there. I am fifty years old, and it had me WETTING THE BED like a child. I won’t mention all the other things it had me doing. I am waiting for that LYRICA LAWSUIT to hit the internet. I won’t miss out on that.
I tried Lyrica. It’s a miracle I’m alive and didn’t kill others! I saw 2, sometimes 3, vehicles coming toward me all the time. After about 2 wks, I gave it up. Did OT like that feeling!!!!
Elizabeth Brown I couldn’t survive without Lyrica. Not only does it help with Fibromyalgia, it also helps with my RSD. I am still housebound most days, but I am not bedbound, praise God! My side effects are not that severe, but I had to choose my lesser of evils.
(Interestingly, I can’t take hormones. Never could be on the pill and have refused everything for menopause. Leaves me crazy angry!)
For the record, after eliminating several GP’s over many years, who labeled me a hypochondriac and spread the word, we moved to a new area.
My pain was over the top with the move and I decided to go see a Chiropractor. He couldn’t do a thing. Couldn’t touch me at all. He finally told me I had Fibromyalgia. I made a very well invested pick for a new GP and finally my life started to improve. Then we went to work on the thyroid. (My RSD at this point was in remission.)
But it took going to a few RAs to get the right one for me. My RA doc finally diagnosed Sjogren’s Syndrome (had symptoms for decades) and RA. (RA is a family gift here)
I am on my second dermatologist. (So far so good)
I lucked out on my GI – love him!
I also have an excellent eye doctor.
If this doctor doesn’t help you change it. You are the one hiring them, so fire them!
Same with medications. If this doesn’t work or you can’t live with the side effects, change!
I had a near death experience from an asthma attack March 28, 2008 and the doctors told me that this experience triggered fibromialgia. It took over a year for me to be diagnosed. My pulmonologist could not figure out what was wrong and was very concerned so he called in a very good Rheumotologist. Three drs and one yr later I finally got my diagnosis. This has been pure hell on my entire family.
For me it was pretty quick since I have RA and sometimes you just get lucky and get fibro as well. It is hard to tell the pain difference sometimes between the joint and muscle pain. The treatment is try, try again. You have to find out what works. Mainly to diagnose me the DR did test to rule out everything else like MS etc. Then did the pressure point test. I still have seen some rheumatologists/DR’s that aren’t believers of Fibro. You have to really dig around and unearth a good Rheumy!
It took me 8yrs to get diagnosed. . But when I took my 16yr old she was diagnosed on the first visit to the rheumatologist. I had taken her to her PCF to get blood test so I would have proof that she didn’t have anything else I had blood test and a list of her problems with us. But I’m not happy with the way he wants to go about with the treatment.
My family doctor first suspected fibromyalgia after running several tests which came back normal. He referred me to a rheumatologist, who proceeded to misdiagnose me with ankylosing spondylitis, because he referred to fibro as a “trash diagnosis”. I took various arthritis meds for about a year, which did not help. He was about to put me on immune suppressors when I demanded some kind of proof I had A.S. An MRI was done, which showed I did NOT. So then he decided it was fibro after all, gave me tramadol and pretty much wrote me off after that. I ended up going back to my family doc, who has educated himself much more on the condition.