So after a 3 month wait, finally I had my appointment w/ the neurologist and he says "what is Fibromyalgia?" He says 'fibro' meaning fiberous tissue and 'myalgia' meaning muscle. So then he says I could get it here, in the arm and could call it Fibromyalgia. I almost knocked him into tomarrow. He says nobody knows anything about this and was so negative.
So now after my last hope has disregarded me and my pain- WHAT DO I DO NOW????
Doctors have given up on me, and now the last hope I had.
I'm in the middle of potty training my 2 year old daughter and by the time I make it to the bathroom, it's to late. So I will have to give up, just like these so called Doctors/speacialist/medical profession.
The only thing that has helped is upper cervical and i can no longer do the drive of 1hour and 1/2. Pain meds can help for up to 2 hours. Then start all over.
I'm so sorry to hear you had to go through that. Unfortunately there are still some ignorant (and rude) doctors out there who have not kept up with new research on fibromyalgia. The good news is there are a lot fewer of them than there were 10 years ago. The FDA approval of two medications to treat FM has given it a new-found legitimacy in the minds of many health care professionals.
Have you seen a rheumatologist yet? Although research in the past few years has shown that FM is a neurological problem, it has been historically treated by rheumatologists and many will still treat FM patients. The field of neurology has been slow to accept us, so much effort has been aimed at educating family physicians to treat fibromyalgia.
If you can find a doctor who cares but just doesn't know much about FM, there is a new resource that can help them. The National Fibromyalgia Association has developed a new Web site specifically for healthcare professionals. It's a new site and they have plans to expand it, but there's already a significant amount of good information there. You can find it at: www.fibromyalgiaHCP.org
I know how frustrating and exhausting it can be trying to find a doctor who will listen and understand, but please don't give up. There are good caring doctors out there and you deserve one, so keep trying.
Are you with a health management plan? If so if you have the energy and werewithal you should find a way to complain. (This is really unacceptable behavior; complaining may have your health management plan send you to someone who does know about FM). Besides knowing that fibromyalgia means fiberous muscle tissue pain your neurologist also surely knows many other illnesses which were named incorrectly before technology determined their cause. What a cheap way to put a patient down.
While many physicians are ignorant about FM more and more know are learning about it. You might try the National Fibromyalgia Association for a list of knowledgeable doctors or FM support groups in your area that could guide you in your search. You may or may not have FM but you'll never find out by going to someone who doesn't believe it exists.
Keep going - take some relief from the fact that you're not alone. This has happened many times to people all over the country.
I'm not really a message board poster, but was researching potential help for my own FM and happened across this board.
Don't want to burst your bubble Doc, but it sure seems there are many more negative nay-sayer Dr's out there as regards FM than there are pro-active, accepting and caring Dr's re: FM.
I am a disability retired RN with 25 + yrs in Critical Care; I don't take narcotics although my former Doc ( he retired a yr ago, sadly) did work with me closely to try & find something I could tolerate; unfortunately I just can't seem to take any opiates, not that I'm looking to. I have multiple herniated disks + FM + bilateral trochanteric bursitis + moderate arthritis. There are days I think it's an accomplishment to just get up.
Despite that, I'm not a whiner, I don't call my new Doc w/every ache and pain; in fact I rarely call her at all. My former Doc gave me parenterally-administered hydroxyzine ( IM) to give myself when it's really bad. I resort to that maybe two times a year, but it does help , relaxes skeletal muscle and at least I sleep. I also make heavy use of my TENS unit, which is a God-send. I walk when I'm not acute and take a ton of supplements to help. I'm not sitting around feeling sorry for myself, but FM does lay me up alot more often than I care to admit; sometimes it seems FM makes my decisions for me when it comes to activities, socializing etc. I've lied so much to family/friends ( ex: Sorry I can't come, the car is in the shop---REAL PROBLEM: severe pain that limits me in ways I just don't want to talk about) that I expect a Pinnochio nose in the mirror any day now.
I tell you all this because I want you to get how bad this whole indifferent physician thing is so many of us are talking about here.
So fast forward from all that to now; recently I went to the new Doc, was really tortured by the pain, felt like a truck ran over me and backed up and did it again. I was in tears in front of her, something my dignity very rarely allows to happen. I said there MUST be something I could take to help when it's really bad. She ( the new Doc) looks at me, hyper-clinical & cold-eyed as a fish and says " With chronic pain syndromes ( special emphasis on "chronic") it just isn't realistic to expect not to have pain".
Call me a jerk but in my world of bedside critical care Nursing, that just isn't an acceptable answer; it resolves nothing, addresses nothing and causes the patient ( myself, sadly) to feel the issue is diminished in the Dr's eyes, that I am a waste of her office time, she'd rather have something sexier to attend to, like H1N1 or paroxysmal HTN.
I have a few friends who have FM and they all have the same story; so many Docs just aren't on board with the new studies and abstracts. It is still being treated as a form of female hysteria and if we are just all given the right combo of sedatives and anti-depressants, maybe we'll go away. Incidentally, I was put on a trial of Cymbalta ( off-label use for FM pain) and it did exactly NADA for my pain and I packed on a frightening 21 lbs in the 14 wks I was on it. I wasn't willing to experiment any longer; I can ill-afford the weight. I never had a wt issue in my life until I became disabled; now on top of everything else, I struggle with that too. I'd just lost 16 lbs when I was put on the Cymbalta :(
We need someone in the medical community to take up this cause and champion for the folks who're suffering with this disease. So far, we have exactly one drug Docs are considering their go-to for FM: Lyrica. Um, sorry, but I'm not about to take anything that has the word "wt gain" in it's monograph, never again, besides my pharmacist of 8 yrs ( an RpH) says it has sketchy effect at best.
It's a real pisser that Big Pharma can develop six different meds to give a 72 yr old an erection, but there is nothing reliable and efficacious for sufferers of FM. ( this excepts Lyrica).
If you have any Doc buddies who're interested, it'd be awesome to get some real patient advocacy going for FM victims...and I DO mean "victims"...what else would you call a disease that incrementally steals your life energy from you, bows you down with intolerable pain and also gets you ridiculed by the medical community ?!
It'd be nice if somebody with M.D. after their name stood up for us. We're not neurotic hypochondriacs; we have a real disease process and it'd be a blessing for all if more Dr's advocated for us.
Thanks for listening. :)
Amen and Amen to your very thorough article. Thank you for being our voice! A job well done!
amen my twin has fm i can attest to all u have said except cymbalta really helps with pain in her feet. you know that is the important issue we are all genetically different so come on guys lets find some real answers and help those with this and other debilitating illnesses. and for the wonderful neurologist he needs to get a clue
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After knocking him into tomorrow, you should have asked him, if there is no such thing as Fibro why then are over 2 million people in the US diagnoised with it and 98% are women? Trust me when I say that those of us who are suffering 24/7 is definitely not what we would choose to stop our active life with work, family, friends and attending church services because we are in too much severe pain to barely have the strength to brush our teeth.......Of course it would be a man that would say such a thing! This illness that ruins our life....I hope you feel better. We have to stick together.
Well hon, your story is all too frequent. You mention 'he' and that is a give away to me. Because men are a small group of fibro patients, male doctors tend to not want to understand the real dis-ease of fibromyalgia. I have had the best luck with women doctors. That being said, you really just need to get recommendations from others in your area who also have fibro, or call the arthritis assc. and get the name of a specialist from them. A neurologist isn't the type of doctor you need, you need a rheumetologist. Ask you primary care doc for a referral if you need one. And tell your neurologist from me:
Muscular pain or tenderness, especially when diffuse and nonspecific.
myalgic my·al'gic (-jĭk) adj.
I am so sorry you neurologist is so stupid. See a rheumatologist. They diagnose and treat fibromyalgia.
Find another doctor. I saw 2 doctors who said it was all in my head. I then went to a rheumatologist who told me about Fibromyalgia. They are out there (doctors who believe in fibromyalgia.) It is all too real. Do a search online for fibromyalgia and you'll be happily surprised at how many sites you'll find. There are plenty of doctors and other medical personel who understand the baffling pain and fatigue we go through. Your neurologist is stuck in the stone age. My aunt is a physical therapist who recently had to take a class on Fibromyalgia. We who have FM have nervous systems that are stuck in overdrive. My doctor told me it may be a chemical imbalance. We have too many neuro transmitters. These little buggers transmit signals to the brain. What should feel like pressure is felt as pain. It's exhausting being in pain all the time. But, there are things we can do to take better care of ourselves. There are treatments that work to help us manage pain. Please don't give up. Check with your local hospital for a referral to someone who will believe you. Fibromyalgia is very, very real. Good luck, Linda
What a waste of time! It's time for you to find a new doctor! I have had the best success with a Pain Medicine Specialist and Rehabilitation doctor. I felt my Rheum. doctor just didn't know enough about FM to treat me properly.
For many of us it's an all too common occurrance. You just have to find the right doctor. Then, you will have to work with the doctor on finding the right combination of things to treat your Fibro. There's a lot of trial and error before you find something that works.
i suffer from fybromagia, besides other chronic conditions and it is a real thing , some of these drs dont understand what real pain is . becouse they dont have it, as for this dr i would go to a different one that understands good luck
I see a rheumatologist for my fibro. Maybe you should try a different kind of specialist. Don't give up. Just keep trying until someone helps you.
Have you tried a Pain Management Doctor Yet? If you haven't, try one. The Doctor you went to isn't much of a Doctor if he/she said that to you. There are a lot of Doctors out there that do not know about Fibro nor do they want to. You need to find a Doc that will understand you. There are lots of sites online that will direct you to a Fibromyalgia Doctor and Pain Management Doctors. Just do a Web Search. You do not have to take that from any doctor. I went through so many its unreal. I finally got the best you can get. Also when you do see a doctor make sure you get checked for Rheumatoid Arthritis as they go hand in hand. Good Luck.
I am so sorry that this happened to you. I have been treated this way, and it would be difficult enough to be emotionally bullied, but add that to pain and desperate need for help so that you can function and raise children - It's cruel. Dr's who abuse patients in this way, any emotional abuse by Doctor's should be a punishable criminal offense. Not being held accountable and having an ego out of control is a dangerous combination in those who are offenders. These doctor's don't know if pain and the depression and desperation that may accompany it, has pushed a patient to the point of barely hanging on. As an "authority" figure, when someone is in such a fragile state, their harshness can be a trigger for reactions that in addition to being agonizing, may be dangerous or even fatal.
I hope you will find a Dr who will give you proper treatment.
RUN....and don't look back! This ignorant doctor will not change his opinion and in the meantime you suffer with an illness that is very real. So don't waste anymore of your time with this person and look for another doctor in your area that does understand fibromyalgia. If there is a local support group in your area for fibromyalgia/chronic fatigue syndrome or even chronic pain, talk to some of the members about their experience with doctors. Even you don't have any local support groups go to the different online support groups and post a message in the forums that you are seeking a doctor in your area that understands and treats patients with fibromyalgia, etc. and you will get replies. Word of mouth is absolutely the best...you can be sure that you will get an honest opinion of services rendered.
Good luck in your search...I have been blessed with a wonderful doctor that fully understands fibromyalgia from both a personal and professional view because is wife was also a victim. He worked tirelessly to find ways to make her life more comfortable before losing her. Now all the knowledge he gained during that time is used to make his patients lives more comfortable and therefore more productive. I don't know what I would do without him. I hope and pray that everyone suffering with fibromyalgia or any type of chronic pain finds a doctor that will work with them patiently until they find what works so that they can live a life worth living again.
Don't give up right before the miracle happens...
Get yourself a new neurologist!
I wouldn't go back to this doctor again. Trust me, I live with the symptoms of fibromyalgia everyday and it is a struggle as a single mother with 3 children. The doctors I see are very aware of this condition and I am treated for it. You need to research and find a doctor who does believe your symptoms and is aware of the fact that there are people out here in this world that do have to live with this unbearable "disease" (if that's the right word to use) I would not be able to perform my daily duties if it wasnt for a doctor who was as educated and knew how to treat this. Good Luck!
Find another doctor. I go to a rhymetologist "didn't say I could spell".
My doctor is very understanding and my insurance company has been
great. I am taking Lyrica, and it really makes a difference. I also have
arthritis so I have pain from that. Hope you find a doctor who is up on
Find a new doctor. This doctor is living in the dark ages.
If you continue with this doctor take in documents proof from the web from other doctors.........but the best bet would be to search for a doctor that understands and accepts FibroM as an ilness.
My neurogist accepts it.........but really didn't have anything to offer in the way of help but tested me for a sleep study and put me on a Cpap machine.
find a new neurologist!
It is very real if it were not why do they have clinics especially for Fibro and how to deal with it and Chronic Fatigue? It is painful when the wheather changes and other triggers. I think that the Doctors that say it doesn't exist should go back to school.
I would say that it is time for a new Doctor. The first Rheumatoligist I saw said he thought I had FM but I was so sensitive that he could not confer the pressure points. He retired and I started seeing a new Rheumatoligist he said the FM did not exist. He also could not get my arthritis straight. The first doctor had diagnosed me with both ankylosing spondylitis and rheumatoid arthritis. The new doctor, when I told hime what the first doctor had told me said I did not have RA. Then the next time I saw him he said I had it then the third time I saw hime he said I did not have it. Between the denial that FM exists and the confusion as to whether or not I have RA I stopped going to him and am seeking a new doctor.
I feel your frustration. Firstly it sounds like this Neurologist is behind the times and needs to go back to school!!
Ignorance is not bliss!! Don't beat yourself up or waste your energy getting angry with these types of doctors because it is just not worth the stress and the added pain!!
I suffer the same type of thing with my CRPS/RSD. Luckily I have a very good specialist and an understanding GP.
You need a new specialist!! Unfortunately.
Tell your Neurologist to go back to school. It has come to my attention that you non beleivers get with the program.
Fibromyalgia has been around for decaides maybe even hundreds of years. and the known last name prior to what it was known for was Fibrosities. if he/her needs help with this tell them to get on the internet and get reading. it's every where on the internet.
Sorry to hear that he/her said that to you. Pay no attention to him/her. We know what we have and you must remember know that you went through this. When seeing your dr's never mention you have it until your confident you can because they also blame every thing that gose wrong with you on Fibromyalgia too.
I'm giving you the heads up on how these guys operate.
I'm so, so sorry. Your situation seems horrible. I have had my fair share of rude doctors too. Don't give up. Keep on moving forward. Good luck!
Wishes of good health,
I am writing from Australia. Because of governmental policies it can be hard to get a referral to a specialist and get past the general practictioner gatekeepers, here, even getting an x-ray can be a problem for me, "nothing is broken, but if your still in pain you can get an x-ray. X-ray result - fracture (this has happened to me three times now - us hypermobile types not surprisingly bend, bounce and break a bit differently to the rest of the population!). You can see a specialist if you are lucky but you have to pay all their fees if you don't have a referral. Sucks if you have FMS or Hypermobility syndrome, which is what I have. Even to see a specialist in a public hospital - again you need a referral. Some won't even see you if you are prepared to pay!
However. I have found that some GP's here may have a special interest in muskuloskeletal problems and may mention it in patient brochures, or ask the receptionist or even look on the internet, and all of these I have seen in Brisbane Qld have had - you guessed it, FMS!
Coincidentally when a Rheumatology registrar diagnosed Hypermobility syndrome and I later saw the Professor of Rheumatology at Royal Prince Alfred Hospital, Dr John Yorke for a while, he revealed that he himself was hypermobile. Who better to see than someone wrestling with the problem themselves.
Seems you just need to know where to look sometimes.
Hope this gives you some helpful ideas.
You do need a new doctor, one that will know that you are in pain, After having my son 5 years ago i started having alot of pain, miagranes and all the gastro problems that it comes with, the fatigue and just about anything that could possibly cause you problems, i got it, anyway, after not being able to get several doctors to look at the list of problems with me i was sent to a specialist, i have seen her for a couple years now, yep "her" anyway, she has put me on cymbalta and lyrica and ambien cr for sleeping, we have tried alot of drugs and medication and after constant weight gain from the lyrica i decided to go off of it, also it makes me randomly fall asleep, it didn't make the fatigue any better.we are going to try some other things but i need to also find medicine for pain. but best of luck to you and i will update what my doctor gives me and tell you if it is working.
A full mouth of non-sense.
Hi my name is Kathy and Fibromyalgia is very real. I've had it since I was a teenager but just got diagnosed with it in 2002. All the Dr's I saw told me all the pain was in my head because they couldn't find anything physically wrong with me. Well, I finally got sent to a Rheumatologist who did a small test on me. There are 18 pts on your body they check for tenderness. If you have at least 11/18 tender spots then you have Fibro. Go see a Rheumatologist, they can help you. Hope this helps.
I was diagnosed with F.M. last September, but i remember back when i was 18 i was in a lot of pain i am now in my mid 40s. My Primary Dr is an absolute doll, I have had her for about 10 years or so and she had been treating me with back issues, as well as muscle spasms. She sent me to a Rheumatoid Doc and he confirmed her suspisions that i may have F.M., however my Primary Doc feels that I havent had this all along, now i am starting to wonder.?? how old were you when you were diagnosed and what were your symptoms please? by the way, I LOVE YOUR SCREEN NAME!!!! have you worked with them before? They give family's a bad name the way they are brought up to be true family believers as well as set examples as to the way humans should react,,,,, take care, Linda
tell him he is not real, he is just an effigy of his world view. I will spare you the story of my neurologist-let's just say he got it-that i was profoundly disappointed in his ignorance, prejudice, etc.
You need to find a different doctor! Fibromyalgia IS real and there are ways to help make you feel better, both with and without prescriptions needed from a doctor.
I was first diagnosed with Fibromyalgia over 20 years ago when it was VERY rarely know by any doctors. I kept at it, and have been seeing a Pain Management doctor for that, and for my RSD (started with foot surgery in 1999) for treatment for years and was finally approved for Social Security Disability this month after trying for over 2 years.
The stress from the pain, both physically and emotionally is unbelievable, and when the doctor doesn't believe it if real you need to go elsewhere FAST. Don't waste any more time with that specialist.
Arlene, I am sorry that you had to endure that from anybody, especially a doctor. While I don't have fibro, I suffer from chronic pain caused my nerve damage. I have been in so much pain that I went to the emergency room. The ER docs just looked at me like I was trying to con them into a prescription. I would tell your primary care doctor about the experience, and ask for a referral. I've found that a referral helps get an appointment much more quickly.
He`s nuts!!! Find a new doctor hun i`ve been to a 100 over 14 years.It`s real if only he could get this he would eat his words.Hugsss keep researching and tell the ones that don`t believe you to kiss it lol.Try to laugh it helps.Ever need someone to talk to let me know.BTW just came from my family doc he told me i`d never feel good again cause fo fibro.
Also I have found that most Neurologist are in denial that FM exists at all. I have had two tell ne that it is not a disease and a third tell me that it is just a symptom of another disease. You heed to see a Rheumatoligist who knows about FM to understand and diagnose you.
Go see a rheumatologist. The first one I went to, said there was nothing that could be done for fibro. That he could prescribe me something for the pain, but...At the time, I worked around machinery, so I declined any of it. He had the same attitude as your neurologist. Then, I heard of a rheumatoligist that has fibro, and he even lectures on it, being a 'real' affliction.
ARLENE : I AM SORRY YOU HAVE HAD THIS EXPERIENCE, I HAVE BEEN IN YOUR POSITION. SOMETIMES YOU HAVE TO BECOME DEMANDING WHEN YOUR THE TYPE OF PERSON WHO DOSN'T LIKE MAKING WAVES AND PHYSICALLY YOU JUST DON'T HAVE IT IN YOU TO FIGHT. IT HAS TAKEN ME YEARS BUT I HAVE FINALLY FOUND AN EXCELLENT PAIN SPECIALIST. I DON'T KNOW IF I COULD HAVE TAKEN MUCH MORE. MY THOUGHTS AND PRAYERS ARE WITH YOU. PLEASE HANG IN THERE.SHEILA
Okay. So, he's a jerk. Find a RHEUMATOLOGIST if you can, and see whether he/she is better able to treat you both as a human being and treat your symptoms. I refused the diagnosis of fibromyalgia for years because I couldn't find enough evidence myself for its existence, let alone any treatments that were reliable, but this guy has obviously taken bedside manner lessons from Attilla the Hun. Fire him, NOW, and find someone who can actually READ.
All the best to you and your family. This my make you get up on your high horse and DO something, which is a heck of a lot better than doing nothing. Prayers for you.
Definitely, change your doctor for a doctor who knows about fibromyalgia.
Many doctors still think this is not a disease.
I have been a fibro patient since i was in my early twenties, After going to several doctors and being told it was in my head, but i was testing a false possitive for lupus. none of the horrible doctors ever followed through, until finally in my mid thirties i found a doctor who listened to me after running the same, plus blood work they all did he was the only one who found my inflamaton level was so astronomically high, at this time he sent me to a Ruhmatologist and he diagnosed me and belived me and perscribed a pain medication that worked for a little while.Today i have been strickened with many health problems not all related to fibro. I am 50 yrs old now and i have always suffered the worst on a scale of 1 to 10, i have passed out, fall asleep random and wake up feeling as though i was ran over by a tractor trailer!!Having fibro you have trigger points as well, and the pain can be so over whelming There are times i CANNOT walk. The other fibro symptoms are lower back pain and your lower extremities swell up (fluid retention) legs and feet.For years it was considered a so called syndrome, however it is now a real disease.Yes you can qualify for diffrent disabilities that are permanant. It all depends on how badly it affects your job!!For years they claimed that fibromyalgia does not run in families well we have proven that to be very very wrong, i have a 62yr old sister diagnosed in her late 40's and a 55 yr old brother diagnosed at age mid 40's, and a son who is 27 diagnosed at age 24, and God rest my Mother my best friend had it diagnosed in her late 70's. To anyone out there that reads this please just remember you will have good days and bad days with flare ups as there called, and no matter what PILL or MEDS they put you on you will ALWAYS have some pain you need to learn to live and deal with.There is no such thing called completly pain free!! Unless you abuse your medications then you only depriving yourself from the BULK of the pain that the meds work on.My doctor is the founder of the fibromyalgia network across the United States if your doctor is not helping you keep looking as i did and look i am able to sit here and type this without severe pain and i now have a few more good days!! oh and just a closing thought DEPRESSION is a big part of this disease in the beginning, however as the time goes by and you will except this you will see the depression getting better and better, turn it in to play the hand you were dealt you may lose in the start but only you can win that hand Keep a possitive attitude and a smile on your face as its def not the end of the world.alot of prayer for you all who suffer this mean disease, feel free to contact me.
I've had firbromyalgia for over 20 years. I go to a rheumatologist who does not doubt my pain. There is now a drug for this condition unforunately I cannot take it; I get thru the day with Advil and when it is really bad ultracet. You have to keep moving. This is not in your head and I truely believe if you go to a rheumatologist he may be able to help you. The drug they are using now is Lyrica. I hope all goes well for you. Rachel Jones in Boynton Beach, Florida
You see, technically that is not correct. #1- fibro means- fibrous tissue. #2 my means- muscle. #3 algia means- pain or painful.
So really he didn't give you the entire meaning. If he doesn't believe in it, it usally means that he can't explain it. But, just because he can't explain it, doesn't mean it
In the very beginning before I was diagnosed, I went to a neurologist who told me that it was all in my head. He proceded to tell me that I was on to much pain medication and that he was going to see me in 2 weeks and if I had not got off the pain meds. that he was going to hospitalize me for detoxification. I told him that my doctor had prosribed it and I was only taking it when I needed it, when there was no other alternative. He reiterated, that in 2 weeks, I had better be off of it. Needless to say, I didn't go back to him.
The point being that you , above all know when you're in pain. And , unfortunated, there are still only a handful of M.D.'s that know that fibromyalgia is real. So, my advice would be to find a M.D. that does. There are lots of directories of M.D.'s and even specialists. Just find a crediable site on-line. Maybe even through this site.
yours with HOPE,
Most doctor's do not believe in fibro pain. I have it and went through much of what you are running into. The best thing to do is to dump the jerk and see a rheumatologist or seek out a specialist in fibromyalgia and chronic pain. They are out there, you just need to do some research.
YES, FIBROMYALGIA IS REAL!!! TO CORRECT ONE OF THE RESPONDERS THOUGH TO YOUR QUESTION....FIBROMYALGIA IS NOT A DISEASE....IT IS A SYNDROME!! THERE ARE NO TESTS SUCH AS BLOOD, URINE, ECT. THAT CAN DIAG. FIBRO. IT CAN ONLY BE DIAG. BY SYMPTOMS AND THE PRESSURE POINTS. I HAVE BEEN "BLESSED" WITH FIBRO FOR 20 YRS. AND IT WAS MY MEDICAL DR. WHO FINALLY DIAG. ME AS SUCH. HIS WIFE HAS LUPUS SO HE WAS SYMPATHIC TO MY COMPLAINTS. I DID GO SEE A RHEUMOLOGIST WHO IS THE ONE WHO HAS BEEN TREATING ME OVER THESE PAST YRS. I HAD A PAIN DR. TELL ME THAT EVERYONE HAS PAIN AND THAT I DID NOT HAVE FIBRO...FUNNY!! I DID NOT HAVE THIS PAIN BEFORE!!! I DID NOT SEE A NEUROLOGIST AS I WAS 10MINS LATE FOR THE INITIAL APPT. AFTER TRAVELING 25 MILES TO SEE HIM ACROSS OUR LARGE METRO CITY AND THE MIRACLE WAS THAT HE WAS ON TIME!!! FIRST FOR A DR. I MUST SAY!!! SO, MY LUCK HAS BEEN WITH A RHEUMTOLOGIST AS THIS IS AN AUTO IMMUNE DISORDER LIKE ARTHRITIS, LUPUS, ECT. BE PERSISTANT IN YOUR QUEST FOR TREATMENT!!! I AM AN EX NURSE WHO LOVED MY CHOOSEN CAREER BUT I WAS GETTING FORGETFUL, FATIGUED, GRUMPY, AND HURT SO BAD TO WALK MOSTLY. AT TIMES I WOULD BE WALKING DOWN THE HALL AND IT FELT LIKE MY SHIN WAS FOLDING IN HALF!! THAT IS IMPOSSIBLE UNLESS IT WAS BROKEN!!! BEST OF LUCK TO YOU!!!
I would say knocking him into tomorrow is only a temporary solution (even though I agree with you completely). First I pray that he comes down with fibro himself and have another neurologist tell him he's crazy. Next, Post in as many web sites as possible the name of this neurologist and what a lousy doctor he is and paying him money to insult you is a huge insult and a waste on money. Finally, I would focus only on people who are supportive of your pain and find doctors who believe in you. Since fibromyalgia was given a name since only in 1990, find doctors who are younger than 50 years old. The older doctors, you would think have more experience, but if they have not kept up with continuing education, those older doctors are dinosaurs and are left in the old school mind set. I hope you will feel better soon. I've had it for ten years and have finally got it under control in the past 4 years. For the prior six years, I had so much pain I wanted to die. The only thing that kept me living was my two very young kids, 4 + 5 yrs when I was first diagnosed. I have to admit, I still have some very bad days and on those days I wish for death to arrive soon. My kids are older now and can take care of themselve. I would die without feeling they couldn't take care of themselves. Good luck and dump that ignorant neurologist.
THEY CAN CALL IT BY ANY OTHER NAME AND IT WOULD STILL BE SEVERE PAIN IN THE MUSCLES, FIBROUS TISSUE. MY RHEUMATOLOGIST TOLD ME THAT IT IS ANOTHER FORM OF ARTHRITIS, AS THERE ARE OVER 100 FORMS, AND IT IS CRIPPLING. GET YOURSELF A RHEUMATOLOGIST. THEY "KNOW THE SCORE" AND CAN TREAT YOU MUCH, MUCH BETTER.
Hey, sweetie - Don't give up. Get yourself a second opinion. Seek out a doctor that understands and specializes in Fibromyalgia. Start with your PCP. He/She should be able to direct you to a doctor that can help you. You can also contact the American Arthitis Foundation. They recognize that Fibromyalgia is not "all in your head". More and more doctors are realizing that Fibrmyalgia is a real disorder.
BULL! TELL THAT TO THOSE WHO SUFFER FROM IT!
find a different doctor!!! I was first examined for unexplained pain at the ripe old age of 2 1/2, fibromyalgia finally dignosed at age 48, by a rhuemetologist. funny how puberty turned "we can't find anything must have pulled a muscle playing" into " she's just trying to get attention" into " all in her head, this woman is a hypochondriac". I would start with the closest arthritis foundation office to you to find a dr who treats fibro, they may have printed info and documentation you can take to that idiot dr if you must stay with him he needs educating about fibro obviously.
YOU NEED A NEW DOCTOR. I HAD A SHRINK TELL ME ONCE THAT MY FIBROMYALGIA WAS ALL IN MY INTERNAL MEDICINE DR'S MIND. I WAS FURIOUS. BUT, I GOT OVER IT, NEVER SAW HIM AGAIN AND MY DR. AND I HAD A GOOD LAUGH OVER HIS (THE SHRINK'S) IGNORANCE. IT TOOK ME QUITE A FEW YEARS TO FIND A GOOD DOCTOR TO TREAT MY FIBRO. KEEP LOOKING, DON'T STRESS OVER WHAT YOUR NEURO. SAID AND GOOD LUCK AND GOD BLESS.
How's this for irony?---thinking I was crazy & feeling depressed & at the end of my ability to endure chronic pain much longer, I went to a psychiatrist ---WHO IDENTIFIED MY PROBLEM AS FIBROMYALGIA---& referred me to a rheumatologist!!!! I also began practicing hatha yoga--basically gentle stretching which really helped alot. That is, until I gained a ton of weight after being put on cymbalta, lyrica & another pill whose name ive forgotten. Also, I am post menopausal & have learned that hormone levels play a role in wight management & depression. I now rely heavily on my tens unit but wish someone could invent a way to self-apply the pads as I have to rely on help that isnt always availBle when I need it. Any suggestions from anyone on techniques for self application of those pads would be HUGELY appreciated! I use a tennis ball and a wall at times to massage those tender points that are unreachable.
time to see a new neurologist.
Go find yrself another Dr. I was dx w/fibro in 2000 and I can tell you it is very real.
I went to a chiropractor and he is the one who thought I had it...so he told me to find a rheumtologist and he dxed me with 14 points out of 18.
Sorry but yr doc needs to be educated...Good Luck!!!
Find a new neurologist ASAP!!! I understand what you are living with. I have had to "audition" many Dr.s that fail miserably. Keep trying you will eventually find one that understands and believes.
I don't know what kind of neurologist you went to. I mean it is really sad that he doesn't even know medical terminology.He got part of it right. Fibro does mean fibrous tissue. My means muscle. Algia means pain. So fibromyalgia means pain in the fibrous tissues and muscle. He must have graduated at the bottom of his class. Don't give up. There really are good caring doctors out there. Have you tried a pain management doctor? Usually you have to be referred. Do you have a regular doctor that can refer you? Don't give up. Nobody deserves to hurt.
One of the first neurologists I saw said there was no such thing. She told me that in her country, Sweden, the translation for my condition was "Middle-aged woman lying-on-the-couch disease.
I would love to see these doctors spend ONE week dealing with fibro! Sounds like your neurologist needs to talk to a psychiatrist!! Myalgia means " muscle pain" I am in medical school.
It really burns me up when these so-called "Professionals" think they know what they're talking about! Do yourself a good favor and see a pain management specialist
Go looking for another one.
I have suffered from fibromyalgia since I was I teenager and they had no idea what was wrong, but I never gave up I went from doctor to doctor till I found one willing to listen to me and not think I was "just depressed". I educated myself on everything I could about the disorder and that gave me the strength to keep looking for treatment I have found that acupuncture helps a lot as well as yoga(small movements), the pool is also and excellent way to strengthen your muscles without the effect of gravity which as you know is a fibromyalgia patient worst enemy. So stick to it ,don't give up and look for alternative treatments that will heal you body as well as your soul. keep the faith one last thing My neurologist finally put me on the new drug LYRICA . It is now approved by the FDA for treatment of this disorder. So take find someone knowledgeable to keep up with the medical journals ,the are always finding a new way to treat this disorder.
it's time to fire the dr. he's not the only dr. in town! drs. are everywhere just like lawyers! the dr. works for you & should be HELPING you. please remember that!
I WOULD TELL HIM TO READ THIS SITE, THEN FINA ANOTHER DOCTOR. HE WILL NEVER TREAT YOUR ILLNESS RIGHT SINCE HE ALREADY THINKS IT DOES NOT EXIST!
Yes, it is real for many especially women in childbearing age. I have RA with it, so it's a double treat, being very sarcassticly put. You need to seek other MD's advice and get the real scoop or even go to to a medical library alot of cities have them in thier clinics.
Obviously, you where sent to a barbaric, narrcisstic Dr. who has NO clue on the subject. Your OB/gyn could be a good source too. Good luck to you and i would have felt the same as you with that neurologist. Nina
It is fibrous mucle pain...but it is NOT a disease on it's own. It is a symptom or a condition, but not a specific disease. Do you have pain? I am sure you do. Is it musculoskeletal? I'm sure it is. Is it a defined disease of it's own? Absolutely not. A disease must have a process, a specific set of symptoms AND objective and definitive lab tests. That's why FM is not recognized by the AMA, it is difficult to find an insurance company to cover just that as a diagnosis, because it is NOT a medical diagnosis, it is a symptom. Find a chronic pain doctor who can help you, and also see a doctor who will give you Cymbalta. 99% of the time, pain is associated with mild depression, because why wouldn't hurting all the time depress the hell out of you? But, no matter what, FM is not a disease. I am a critical care RN who was part of a huge, national study with Mayo, Baylor and Johns Hopkins. It was a six-year study. It is not a disease, but it is a condition based on symptoms of fatigue and pain. It used to be called chronic fatigue syndrome. What makes me angry is that there are doctors out there who WILL take advantage of you, your money and your insurance by marketing to frustrated consumers who have chronic pain issues. Get out and walk, change your diet to gluten free, low salt, low dairy. Take care of yourself. I hope you don't think I'm bring rude because I'm not; I do believe you have pain, but this is NOT a disease by itself. I hope this makes sense. Thanks for reading.
NOT a disease on its own u say?! Mmust have a process, specific set of symptons? I can tell you this "condition" is definately progressive & has specific symptons. The tricky part is recognizing what those symptons are AND realizing they are connecting. From communications with other sufferers I have noticed common threads. My first young memories of "outings" were trips to the hospital before I even went to school. Pain so intense it woke me crying in my sleep.feeling like my shin bones were splintered."growing pains" morphed into tests verifying there was a problem in the growing rate of the ball socket of my hip joints-then to arthritis diagnoses. I have seen others started same way-arthritis at young age; women with early menopause,; the fatigue;the depression;the search for non narctic relief; eventually having to go thru pharmaceutical remidies. Hormone imbalances also common thread along with osteoporosis. Those meds causing weight gain like lyrica & cymbalta is completely counter productive. Stress causes flare ups. SO SO many commen threads (migrains, balance issues etc) that are often overlooked----seems to me that the criteria for it being a disease are all there ecxept for one thing. The verifyable test. JUST BECAUSE MEDICAL PROFESSIONALS HAVE NOT YET AQUIRED THE KNOWLEDGE TO KNOW HOW TO TEST FOR THIS DISEASE DOES NOT NEGATE THE FACT IT IS REAL!!! How dare you. I too have a nursing background. Book knowledge just doesnt have all the answers. I hope u never have to live it before you recognise the severity of this Dis-Ease! It does not get better-it bec8mes more difficult to manage as time goes on & many of us have questioned our own sanity. Many of us have also had some type of impact-such as a car accident-that seems to play a role-perhaps it is a trigger or cause of the initial flare up--idn. The neurothopy-the jerking motions-the way this hidden disease completely dominates the quality of our lives is overwhelming & it is hard work to mantain a positive outlook. The last thing I ever need to hear again is a dismisal of my validity. My "knowledge" of medicine drove me to question myself to the point that I did seek out psychiatric help because I belived the hype of the so called medical professionals-that it wasnt a "real" disease. THANKFULLY I was blessed with a wonderful head dr. SHE diagnosed the fibro!! Her help in meditation, finding hatha yoga, & teaching me ways to boost up my moral &keep a positive attitude-along with a referral to rheumatologist made my life bearable again-happy even
its not aneurologist you need to see it's a ruemotologist thats who diagnosed me with chronic fibromyalgia syndrome i know loads about it now so you need to ask your doctor to refer you to a ruemotologist you also get anxiety with this illness 8 points of pain out of 13 for them to diagnose it i scored13 you are entitled to highest rate disability as it is now recognised as it should be as a real illness you also get ibs and i have an underactive thyroid to it all goes hand in hand plus i have other illness to because of this dont believe people when they say ther is a cure coz thers not it can just go away on its own if you want more info email me at firstname.lastname@example.org hope this has helped i know how much your suffering
Who is your neuro?
I am so sorry you had to experience that, It is horrible,I too had that happen to me. Ahhhh, but pay back is a *ITCH go to www.RateMDs.com put the zipcode in and his name,, thennnnn, you can write your experience with that DOCTOR,,IT MAKES ME SICK TO CALL HIM THAT!!! I use that web site when I am seeing someone new for the first time, and read what other patients say about that particular doctor,, It sure as heck made my day knowing he lost a lot of patients due to his LACK OF KNOWLEDGE,,, good luck, I am sure you will find a Doctor that will help you, in the mean time,, WE ARE HERE FOR YOU !!!! GENTLE HUGS,,, LINDA
About 10 years ago a neurologist (from where I don't know) told me that in HER country they called fibromyalgia "middle-aged woman lying on the couch disease".
I do believe that most of our doctors have learned that there is more to it than that.
Oh, and I think you should have punched him in the arm and then, as you walked out, you could tell him that now HE has fibromyalgia!
I have fibromyalgia and ended up being seen by a neurologist. This was due to having a lot of headaches, ringing in the ears, communication became difficult, and having jerking motions with my body where my hands would curl into a fist. After the second visit he told my caregiver that it was all in my head and if I should see a psychiatrist. In turn I told him that he should stay out of my field regarding behavioral sciences and that he was suffering from psychosomatic delusions. He failed several questions thrown to him regarding the functions of the meninges and the affects of fibromyalgia, and what where the parts that made up the meninges. Ifa provider can't answer at least these two questions he is ignorant and need to go back to school with a cup of coffee to stay awake next time. Patients can obtain their records and repeal what was said and done by writing an amendment to them (*make copies), go on doctors rating and review and let people know how your provider rate. I am a veteran and check on a list and used the review sites. Found out every VA neurologist failed the ratings.
Something to consider (and something I bring up with a LOT of fibro patients) is more recent literature that suggests fibromyalgia is brought on by some kind of bodily trauma, frequently without an obvious source. For instance, perhaps you get in a car accident and have what you (and doctors) thought was a minor injury, but over time it turned out to be much worse than initially thought. And so that was the starting point. Your body was trying to deal with this thing that happened, and over time it developed these extreme sensitivities to stimuli, resulting in the constant pain.
I was diagnosed with fibro more than a decade ago because I had mysterious pain they didn't understand. I had all the tender points, but years later we discovered there was something much bigger going on. When I was little, I was diagnosed with gross hypermobility, and we addressed that pretty well with strengthening. But over the past decade or so, more and more doctors are learning about a condition called Ehlers-Danlos Syndrome of which one of its primary symptoms, as it turns out, is hypermobile joints that sublux and dislocate, sometimes without the patient even realizing it. I was finally diagnosed with this in 2009, and it was a super important diagnosis because a lot of the physical therapy they give to people with general fibro isn't the best for people with EDS! Yes, I DO have fibro, but it's a SECONDARY condition to the Ehlers-Danlos Syndrome. The constant slipping and sliding of the EDS has caused some lower level chronic pain, which eventually overloaded my nerves to the point where they are in a hyper state ALL the time. Which = fibromyalgia!
So something I often suggest to other fibro patients is talking to doctors and pursuing possible underlying causes for the fibro. Did you have some injury a long while back that you weren't even aware of? Do you have some kind of underlying condition like EDS that is even less known than fibro that is CAUSING the fibro? Often when they begin treating the cause of the fibro, a lot more progress happens in your healing. It's possible to just have fibromyalgia for a number of reasons, but looking for possible causes can be very helpful too. You definitely need to find an awesome doctor who will go to bat for you and figure things out. Which I know is easier said than done. That's been an odyssey for me too, but keep at it! It's worth it in the end.
Dear Disease-Fellows, here is my understanding of FM. Firstly, please be sure that FM is NOT "all in your head"; it is a phisiological disease undoubtedly. Any educated person who thinks that its not real, is an idiot. FM is some disorder in central nervous system. That disorder can be caused by various reasons therefore the whole set of symptoms of FM and the sequence of appearence of these symptoms can be different for different patients; hence different treatment may be required for doifferent patients.
I was a student and 27 year old. I am suffering from FM since one year. Before 27/02/2013, I was a happy, healthy and very active person, I never got tired. Life was like a paradise on earth. But that day I got wet in rain while going for my lecture. I caught cold but surprizingly did not have fever; rather all major symptoms of FM started like headach, sleep disorder (restless leg syndrome), fibro for (brain fog), difficulty in maintaining balance, concentration and memory problem, wrong sense of time etc etc etc. Migrane, back pain and shoulder pain has started four month ago. I had to quit my studies and now I am taking 24 hour bed rest. I am also patient of high blood pressure, hypothyroidism, deficiency of most of the vitamins and osteoporosis. I visited several doctors but no-one could even diagnose FM till Nov-2013. My condition is getting worse and worse till now but I am not hopeless. Luckily I have met a very very intelligent rheumatologist in Dec-2013 who understands FM very well and is hopeful that I will recover gradually.
For the time being, my suggession is that all of you should read more and more about FM on internet and try different types of suggessted treatments (NOT medicines) like yoga, streching exercises, tips for better lifestyle. These help a lot but please find your body's responce to each because same technique/exercise can give a relief to one patient and make pain worse for another patient. I have found from my personal experience that understanding our disease (FM) ourself is the most important thing. Then we should talk to the family members/friends around us so that they understand our condition. This awareness and a few techniques available on net have helped me a lot. Before awareness, I was ignoring many symptoms and didn't tell many extremely important facts to the rheumotologist because I was wrongly considering them non-medical. Its all because of dr's intelligence that he diagnosed FM even then. After studying about FM, now I am going to meet him again so that we plan a better treatment. I will be here on forum again as soon as I will be in a position to discuss the treatment. Till then, please don't loose hope and try to talk to the people who are suffering from the same problem. I wish all of us to get well soon.
my name is bene and I recently had a breakup with my husband about 2 months back. He said we are done that we should move on that he has someone else now. I could not even bear the pain and everything and just so unfortunate, I discovered I was pregnant when me and my ex we going through some big fights. I couldn't tell him I was pregnant because I knew he would blame it on me. I suffered with the secret on my own and I could not go through an abortion on my own. The funny thing is I discovered that he had two other girlfriends I was not aware of. I know if I could turn back the hands of time I would do it again because i could not suffer everything alone, I almost drop out of varsity because of a guy. On a faithful day after i lost of thought, an old friend told me about a spell prophet with this email email@example.com who could help me restore my love and have my baby in good terms. I sacrifice everything to make sure the spell was done. and the spell was now the savior. his spell brought back my lover after 2days. My joy, love and happiness is restored because of this spell prophet, my baby comes soon.
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Well first of all....eithr change doctors or go to a doctor who specializes in
fibromyalgia. My medical doctor didn't quite grasp the seriousness of it either,
but she didn't mock me about it either. I therefore stayed with her, but saught
out another physician for Fibro which could be one for arthritis...they are more familiar with Fibro.
After all this time gone by with so much info available....I would not accept the
answer your getting from the doctor you've seen. Search out for another, talk with friends, make phone calls and ask out right on the phone if they deal with
fibro in their office.
Hope this is helpful and best wishes to you.
Some Doctors are just STUPID and MEAN and have no idea what they are talking about. I have had Fibromyalgia since 1994. I have had to deal with the doctors that say its not real, I have had to deal with the doctors that call you a drug seeker. You need to find a doctor that you can talk to and remember that they work for you!!!!!!!! Not the other way around and if they are mean to you, or don't believe what you say. Just get up and say that I am sorry you feel that way and there is no reason to continue this appointment. I have had most of my sucess with a DO type of doctor. Please don't give up!!! I know how hard it can be. Find a doctor that believes in fibromyalgia if you are having trouble finding one, its ok to ask when you make the appointment. Remember they work for you. GOOD LUCK!!
Arlene, I want to cry reading your post. This guy is unacceptable! Please try to find another doctor. I know how overwhelming it can be to organize a doctor visit: kids to the sitter, driving, finding a place to park, walking to the office, filling out the forms for the hundredth time, etc etc. But you hve received BAD MEDICAL IINFORMATION! Thee ARE treatments to help this very real disease. I will be hoping for you that you can find a caring and competent doctor. Best Wishes-
There is a country full of Physians! You are never limited. And there is the internet. Take the information that you find and bring to your PCP!
As forthe physician that does not take it seriously, well, they didn't take Migraine patients serious for decades! Now, they call Migraines a disease! They will call Fibro. a disease also Soon! I would like to see the look on that physicians face when they soon do!:) A Rheumatologist might ,depending on the person, be more knowledgable and sensitive to you. Go out and be a advocate for yourself until that time does come.
God Bless you!
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The reason that doctors have been not understanding patients is that there has been no accurate information about the disease. And it is not a rheumatological condition, it is definitely a neurological condition having to do with central perception of pain and pain processing. I can't list all the relevant references but here is a key one that shows you how recently the understanding has completely changed:
Spitzer AR, Broadman M. A Retrospective Review of the Sleep Characteristics in Patients with Chronic Fatigue Syndrome and Fibromyalgia. Pain Practice. 2010;10(4):294-300.
It is important to have an exchange of information regarding illnesses. I shall look this one up. Not only accurate information regarding the disease, but their lack of willing to look into such a disease as an existing or real by those loving to parade in white coats. MRI, MRA, and CTs do not have the capability to detect pain - just inflammation and other physical changes that are noticable.