Im in USA and I would say that 50 percent of Drs don't consider fibromyalgia or Chronic Fatigue real diseases.

[TooTiredTara]

I used to be a RN. I have to tell them what test I want ran based on my symptoms. Sometimes I get dismissed. But I know what I feel and I tell them Why would it make this up. I get them to run the tests and Im right.

[Cotswolds25121]

good morning Tara, it’s a great disservice to you and others that even today you are dismissed with such arrogance. We too have drs here in the uk that still don’t accept the fact that it is a real and painful chronic condition that like me years ago was also ignored and blamed on ‘it’s all in the mind’🤦‍♀️I hope this situation improves for you all in the US and other countries. It is the day of our day Queens funeral today as I’m sure you are aware, who could not be. So you may not receive many replies today or at least until later 👑😢god rest our Queen

[Hazel_Angelstar Administrator FMA UK Staff]

hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Unfortunately, we have similar issues in the UK, with some health professionals dismissing the condition

[Cat00]

what is a RN?

[Lola43 in reply to Cat00]

Hi Cat, RN is a registered nurse 👩‍⚕️

[Cat00 in reply to Lola43]

oh right I was figuring the N was nurse but I couldn't work out what the R was 😁

[Smoggie1]

Hi i am glad that you are getting sone help in usa..at least they run the tests for you.if I was to ask my doctor here he would just look at me... Even though I know most of the time when im getting other health issues they dont seem to try or do anything till im in agony and thats at hospital.. i find doctors dont like it when you ask for thing doing here and will find reasons or excuses not to... Or if you seem to know more than them on your condition... Which sometimes is alot as some generally dont give a damn.. they just dont.. as they doctor and you just a patient.. how could you possibly know more... Its hard to explain but they look down on you or think your mental..

[Dizzytwo in reply to Smoggie1]

you may find its the same in the US. From what I understand they have to pay for medical insurance. And that does not automatically cover every test you would like to have done.

So for most people they also have to pay extra for tests they want doing unless their insurance covers it.

Also if I understand it right from my friends in the US paying medical insurance does not mean all their prescriptions are covered. They have to pay what is called a copay ontop when they need a monthly prescription for their meds which also differs in amounts of $$$ depending on the cost of thier meds.

I am sure our lovely LisaSnow can put me right. But getting testting is not just as simple as asking the doctor in the US for it I dont believe.

Momo

[LisaSnow FMA UK Volunteer in reply to Dizzytwo]

sorry I didn't see this thread until now. Momo is right that everything medical is expensive in the USA. We do pay for insurance and on top of that, generally have to pay "copay" for doctors ' visits and medications.

The decision regrading tests is really something we should leave to the professionals like your doctor. To diagnose fibro is complex and takes time. What test to order is fully dependent on individual patient's symptoms. I can understand why doctor can feel troubled if a patient told them what test they "should" order, as if patients know better. If that's true then there shouldn't be a need to visit the doctor, right?

[Tjmill]

i too have found it difficult,but on the subject of doctors ,i have been in a few times with the doctor when they have gone on the computer to google symptoms to which i find i was speechless

[Willow0207]

Hi Tara, Marie here from uk! I think it was quite hard here by Drs but we are lucky or shall i say i was as i lived afew miles away from Bath & The Mineral clinic who had a Dr who specialised in Fybro & she was in the process of teaching Drs & surgeries all about it, she has now gone to USA to do the same , i can imagine it must be horrible not being able to be heard. It’s totally taken over my life as I’ve shown no improvement over the years !! Top to toe grrrr ! Are you on any medications & what are you symptoms, easy hugs, Marie xxx

[Smoggie1 in reply to Willow0207]

maybe you could have her come to suffolk uk as they dont give a hoot here

[Mrdiagnosis]

Im afraid that the country you live in isn't the best in regards to the health and wellbeing of its citizens. Ive spent many times aghast at how my friends get treated and how little time you get to take for holidays etc. How can you they expect society to work so much and stay in good health. Its like many places in earth its about money .

You take care and stay strong ❤️

[EarthSitter1]

Hi, sadly It's like that where I live in the Uk, I went recently to see my Gp and his attitude was terrible. I insisted he referred me back to the rheumatologist as I really need help but I received a letter yesterday saying that although I have been referred, the rheumatologist May choose not to see me and just refer me back to the Gp -prime example of a vicious circle! 🙄

[Ellie1991]

I had the same problem with my gallbladder, it was infected and not for from rupturing and they took 3 years saying well its not that bad and should not hurt. yyet the consultant who took it out said they are the worst pain going. I would just go in with evidence or say well ur paid to diagnose and heal so do it

[fmlife in reply to Ellie1991]

just seen a youtube by foxes afloat for another painful issue, the story is quite damming to the service where they live. am not sure if allowed to post those sort of links, so gave the name where to look if interested.

Fibro wise my first Rhummy spent the year long appointments laughing at me, yes laughing in my face and my friend who went with me.

my second opinion person in another NHS area knew straight away what was wrong, understood the issues, was on different medications straight away.

If struggling, always ask your GP for second opinion.

[Willow0207 in reply to Ellie1991]

I have had gall pain before & I was nearly at the end of doing something silly ! The pain doesn’t come & go it’s just there , I feel ur pain , my sergers wudnt listen to me either WHY!!!! The downside of fybro , every pain they said was not gall bladder , it bloody was ! But it wasn’t stones it was “sludge “ like the stones had been blasted , still the pain was unreal . My friend actually said to me “ once a Dr knows you have fybro & you go with any other ailment they say ahh! It’s just fybro , winwin#win lose good luck xxx

[Painter49]

hi there. I’m also in the US and after 2 years and thousands of dollars of tests, I finally went to the Mayo Clinic in Florida and they diagnosed both my chronic fatigue and fibromyalgia. It is so frustrating but from what I read, more doctors are recognizing FM and CGS as nervous system disease rather than psychiatric issues.

[TooTiredTara in reply to Painter49]

I went to Mayo as well in Jacksonville in 2016. I took like a week class for Fibromyalgia. I went back and forth to Mayo for over a year. I had 2 types of insurance but n a bad marriage of 20 years. Not supportive. They wanted me to stay and do a strength training class, but my ex refused to let me stay . Anyway.. Its hard not being heard .

[Yassytina FMA UK Volunteer]

Hello and a very warm welcome, yes I’m still amazed when I still read that fibro /cfs can still be dismissed 🙁I’d like too put these professionals in our shoes for a few months then they might understand. I have cfs, fibro, sleep apnea(treated) not the best trio but they were all diagnosed separately over a period of time, great when I stumbled upon a doctor who was brilliant and gave me my diagnosis of the fibro/cfs , took awhile as my original doc you walk out of the room and feel you’ve wasted your time. Xx

[thestorm]

Hi Tara. I am not on this forum often, I am on the lupus hub more. But your post is so very spot on. I to live in the US and experience all you good peoples replying about here. I have been struggling with doctors for more years then I can count. I wish you well, and keep advocating for yourself. Blessings,. The stormy sunshine.

[Lupusrelative]

hi Tara,

I too have fibro but thought that there aren’t any tests that will tell if you have fibro?

[Luv2quilt in reply to Lupusrelative]

hi Lupusrelative,

They do have a test here in the U.S .A, though I think it is not very unreliable: it has a high false negative (?). When I’ve seen Dr.s or rheumatologists they have just diagnosed me based on my symptoms and where the major pain spots are. I’ve read that there are 2 hypotheses for the pain: 1 is neurological, the other rheumatological. They use different meds, I think to treat it. Neurology is more nerve/pain approach, rheumatology is inflammation approach.

I, personally am not on any regular meds for my fibro. I do take amitriptyline for esophageal spasms and find it does help with my fibro as it causes me to sleep deeper without frequently tossing and turning and getting up at night. I also, do not have habitual, constant pain. I’ve been wonderfully pain free these past 2 weeks, but last night as I lay in bed, I experienced crushing, increasing, horrible pain in my legs, arms, and joints. I surmised it was going to rain the next day and sure enough it is raining this morning. So, I’m back in pain for who knows how long this time. I can have varying intensity levels of pain lasting days to months. But I relish the pain free days and will reflect on them as I endure the current painful ones. It is so unpredictable for me.

I don’t take meds cause the ones they want to prescribe have awful potential side effects, one of them is possibly getting Lymphoma, (type of blood cancer) which is in my family history. I’m not to the place yet where I am ready or needing to take those meds to function.

[Lupusrelative in reply to Luv2quilt]

yes, my doctor ran all the usual tests for lupus, RA etc. Both my sisters suffer from these diseases. All tests were negative. She diagnosed fibromyalgia and put me on pregabalin which takes the edge off. She would like me too see a rheumatologist but I’ve had bad experiences each time I see them.

It’s raining here too in Colorado, which we always desperately need. Hope your symptoms improve soon.

Ho hum, we just have to get on with it.

[TooTiredTara in reply to Lupusrelative]

I was diagnosed with fibromyalgia as well. I went and saw an immunologist in 2014? He ran tons of labs. I have Epstein Barr virus. Most people do have it. Mine stays in a reactive State.