Fibromyalgia ; junk diagnosis?

I too live in Colorado and my doc retired 2 years ago and now I am unable to find a physician who specializes in fibromyalgia and chronic pain. I go to Salud clinic for my general health and they want me to go to a pain clinic, however, the pain clinic takes over an hour to get to and back home since I live in Estes Park; therefore its a whole day of traveling which ends up putting me down for the rest of the week!! Moreover, this pain clinic doc has done nothing for me so far other than to order numerous tests to rule out other conditions---tests which had been done in the past by my previous doc---and to recommend physical therapy 2x a week which I cannot afford because my co-pay is $45 for physical therapy!!

If you find a physician, please let me know hon, I know exactly where you're coming from!

Teresa/EstesParkLioness

i'm in Estes Park, but would go to Springs if i could find a good doctor! what's this fibro clinic there? can u give me more info? love to check into it i cannot find anything up here in northern colorado!

I live in Australia, and because of all the deaths of people on prescription meds they have tightened all the rules for narcotics, which is bad news for me because I really have trouble coping with fibro pain, and chronic migraines. First you have to get a general practitioner to prescribe them, then the government makes you go to a pain specialist to get reviewed yearly and he has all the power, if he says no meds no doctor can prescribe them so your at everybodys mercy and I stress every time I have to see him, he's heard everything so it's hard to no what to say. He's a real hardass so you really don't know how your doing to the end of the appointment,but never do the deperate crying thing he see's drug effected people everyday and it's his job to weed the garden I'm on 60mg twice daily of oxy-contin, and morphine, largactil, maxolon for my migraines if he leaves me at that I'm manageing ,but you can't get a new supply till a certain date you can't go to more then one doctor and if you get labled you won't get another narcotic again so I hate people who abuse the system because it makes it so much harder for peple with legitimate pain'

What part of colorado...north, south etc. Also, i start looking into applying for new federal health care. I think since federal employees were not working..programming is not going to be working till middle of november. BUT...hopefully help you to be able to see any or more doctors. I believe all must accept it.

Wish I did, going thru the same thing in FL, fibro is not a junk disease, doctors like that should have their licenses revoked, if he had half an education, he's know that it's an autoimmune disorder, it just happens to fall into the category of "invisible diseases" lost with my dr 2 weeks ago, just got a letter in the mail from office stating I am no longer under his care, so the wheel goes round and round...........

I can tell you what to do, call your state dept of manage health...plus call medicaid and say exactly what he said. Try to compose yourself and write down exactly what he said and what happen in the visit. Document it as well as you can right now while it is fresh in your memory.

Now, thing to find out did he mean that fibro is not a real disease or that he felt you need some counseling and that pain medication will not help what he thinks is wrong with you? Try to be objective. Often when we are turned down from what we think we need we feel not heard or believed where if you had been able to ask him exactly what does he mean? That you are not sick, faking the pain or fibro is not a real disease( which would be really stupid on his part but i know there are still doctors who had such huge ego's they think they are smarter than everyone else). Which would explain that is why he is just handing out drugs instead of doing any real diagnosing and medical work.

I am not sure what you mean about 'I am 240 percs a month'? That you take percocet or not sure? If you were taking that many percocet, i be more worried about being in withdrawal which you would be in or will as soon as you run out of your pills. IF you cannot find a doctor to write this script....you should ask what should a you do since you will be in withdrawal which is extremely serious. I am not trying to scare you just prepare you, as something similar happen to me and i could not get my pain med script for 10 days, i immediately saved all i had to wean them out and i still became so sick that i lost over 20 lbs...not water as it never came back on. It was so bad, i am now slowly weaning down my narcotics and trying other pain killers or treatments though it is going very slow mainly because finding alternative pain relievers is hard if all doctors say i am in severe pain and they think only thing i should be using is narcotics..so i have to push them to use alternative methods plus do all research myself. They want you hooked as it is easy money.

SO in a way this might be a blessing.....you might ask about going on suboxone if you do go in complete withdrawal. It is drug they give addicts to keep them from using opioids etc....but it does relieve pain. Medicaid most likely covers either it or one of the drugs like suboxone.

So if you are using percocet, i start using least amount possible so you have it last as long as possible. I start using NSAIDs plus other pain relievers and get someone to help you wean off percocet. Plus long use of narcotics has extremely negative affects on your brain.

But i do not wish on anyone to just go in withdrawal....ER will only give you drugs to help stop things like vomiting or severe diarrhea and hopefully they can keep eye on heart and other important organs which going in withdrawal can have serious effects.

Most PCP doctors are not writing out pain scripts due to abuse and so many people die randomly or use other drugs such as xanax , sleeping or muscle relaxants which combined with narcotic pain is deadly. .

A great book and documentary called American Addict that explains about how DEA and FDA have been trying to get in place a federal program that shows all who are using narcotics by prescription so any doctor can enter their script and check to make sure patient is not seeing other doctors to get more or using any of the drugs they say they cannot mix. Sadly not all states are complying..Florida being one of the worse.

I will say this...since you are in Co, i used marijuana for fibro pain and it did work great ...plus helps you sleep. You just need to go to clinic that knows their product and can sincerely help you find the correct type of marijuana for you. Start out using less as it is very strong compared to years ago. So you might get off percocet and move using marijuana instead.

Plus you do not have the worry of mixing it with other drugs..well some of course.

I am really sorry that the doctor was not respectful, i hope you do call medicaid and say exactly what he said....With SSDI accepting fibro as reason for disability they cannot really agree with him that it is not a real illness.

Also doctors hate for dept of manage health ..it is in your state of colorado ...to get involved with their practices. So i call them as well and they can educate this idiot about the fact fibro is a very real disease with real pain.

But document and plan ahead in case you cannot fill your pain medication in time. i wish you luck ...you should be able to find a doctor who will help it is very open and caring state.

Thank you to all that have replied. I went to my pcp in a puddle. He knows my story well and works with me. He took over the pain rx. I signed a pain contract and agreed that I would not ask for any more than the set amount. So far so good.
As far as the other Dr. he thought that fibro did not exsist. He said a junk diagnosis as in that is just a general term for people who dont feel well. He believes in supplements and excersise to completely heal. I am not saying that this does not work for some individuals. For me one who has spent tens of thoasands of dollars on “healing” to no avail is insulting. At this moment in life give me drugs. I have tried the all natrual before it was popular. I am tired and have gotten the most relief from modern meds. This is not to say that some day I wont decide to go a more natrual route. Even now if I dont need the meds, i dont take them.
Thank you for everyones concerns. Sorry it took so long for me to reply.

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Rherhebee, I am just relieved that you found someone who was willing to listen to you and to treat you.

Me too!!! It feels like I have to be major dramatic to get heard which I hate because it physically hurts. I dunno if that happens with any of you but my emotions have to stay in check or flares come. But Yes I am beyond relieved. And so grateful.

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I am with you on this one, a sampling of the things doctors have said to me:

Neurologist re: cognitive issues, "perhaps your level of education is preventing you from understanding and learning"

Ortho/Osteo re: bad reaction to Fosomax. "if you don't take it your bones will collapse and crush your inner organs'

Psychiatrist re: Nuvigil "since you are having problems with water weight gain from your meds, what difference does it make if you have a little more?'

RA doctor re: negative reaction to Savella, " well this is the only drug accepted by the AMA for fibromyalia treatment, there is nothing more I can do for you, im returning you to the care of your primary doctor...

just a chocie sampling.

I'm glad things are working out better for you! These two sites might give you some more info. to help either you or your doctor. http://www.cfidsselfhelp.org/ (this site is founded by doctors who have either CFS or Fibro & has a ton of information to help you manage your disease) http://theacpa.org/ (this site is for the American Chronic Pain Associations and this page http://theacpa.org/Communication-Tools has a bunch of tools to help us communicate with our doctors in ways they can better comprehend) Hope things are going well! *Hugs*

I so know what you mean, every visit to my heartless non-compassionate doctor and get treated like this everytime its horrible they need to take their vows of their work seriously I dont know what to do myself , my doctor said he is not giving me more pain medication yet I know what works for me not for him Im scared I am going to suffer because he feels Its in my head and Im being an addict lord help us all good luck

I don't know of a doctor but please don't feel at fault! Fibro is NOT your fault nor is it from your imagination, laziness, hysteria, depression or boredom. In fact, many doctors suspect that it is an autoimmune illness and some think that fibro is the early warning pain/signal of an oncoming autoimmune disease, since they are so often linked.

It sounds like you need to arm yourself with THIS every time you see a new doctor: http://www.healthline.com/health-news/aging-scientists-find-physica...

This is a great article detailing legitimate medical research that found real physical reasons for fibro.

If, after reading this, they still insist its a junk diagnosis, you could politely tell them to go and stuff it - LOL, no, you could politely tell them that they need to update their medical info as it is very out of date. That's a polite way of saying that he's a lazy doc who can't be bothered to read or understand valid medical research, which this info - given above - is.

I'm so sorry that your doc asked very delicate info in front of your child. He should not have and he had no business asking it anyway since no link between the two has been well established. Dopey doctor!

Did you get any pain meds from your visit? If not, you could try going to a regular doctor and ask to try Lyrica or Cymbalta. Both do help some with pain relief. But they can be very tough to get off of, as I understand it. It's a risk I've taken as I can't handle this pain on my own.

Please feel free to com back here for emotional support because we're all in the same boat and quite often we are much more knowledgeable about fibro than a real doctor.

Many gentle hugs and a little stuffed bear to you too,

Petunia

I wish she had asked then why does SSDI accept it as qualified reason to be disabled?

If it is only in your head, how could they developed a test for it? I bet he does not even know about it. If you can stay calm and through the ball back in their court to make them explain their reasoning it shuts them down fast.

Makes them mad since doctors like this usually have large egos, but you make them explain the logic behind their uneducated statements. Knowledge is the key,and don't get mad just say it like gee..explain for it me.

But i am glad that she found someone. Many times best to just walk out and find another, stress is not worth the time with people who are that ignorant and uneducated.

Bad Doctor!!! Fibro is real and millions of us live everyday with the symptoms of it. Don't feel bad... I have had many doctors be extremely rude. Need a doctor that understands fibro and will treat you like a person. What makes me so mad is they treat patients so rudely and still get paid. Aholes

Actually, i had forgotten about this but if you get a really rude, unprofessional doctor, call your insurance and tell them immediately or next day. Make sure you write down what they said and tone etc...document it.

I had this happen and insurance called the doctor asked if he had said that..idiot admitted it so they said due to being unprofessional they are refusing to pay it due to their contract agreement....between them and the doctor. They told me if he tries and make me pay it to call them ...he did send me one bill...i called them and never got another.

So you can get back if you make the phone call to your insurance...my insurance company is main one.

I agree! You should report his behavior. No one should ask you that if front of your child or call you an addict.

Gentle Hugs and sorry your having to go through this.

Stacey

Oh wow! What a quack!! i'm so sorry you had to go thru that!!

I don't know of any doctor but I would call the state medicaid line and ask them to recommend doctors in your area. Keep your head up. I know it's hard. ((HUGS))

Wow, I can totally relate to this. I went through the same EXACT thing almost and am taking some of the same meds. It is a truly awful thing to go through and it just isn't fair, in my opinion. I feel ya on the Colorado Medicaid. Finding a descent doctor is a struggle. Luckily I found one not long ago. So far, she's working out better than any other ever has. Which I'm grateful for.

Josh maybe you put your Doctor on the preferred Dr.s list ... on the Home page ...scroll down it is on the left...I think....