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How do you get your doctor to understand?
14 Replies
GRee - December 12

I keep seeing my doctor and she just keeps tell me now that I am over 40 my body is changing and that I will and a few aches and pains. But this is more then a few aches and pains. I hurt all over, I can't sleep (I average about 2 hours sleep in 24hrs.) I feel like I am going crazy and don't know how to stop it. I explained all of this to my doctor and she just says it is my age. I sometimes feel like yelling at her and telling her to take another look. I had never heard of fibro until I went our my insurance's website and used ask a nurse. She told me to look into fibro and do some research on it that I seemed to have the classic symptons of it. Now 6 mons. later and my doctor says the same thing over and over. I just fell like I am going over the edge and everyone is standing around twiddling their thumbs. So how do I get her to understand? Do I seek another doctor?

 

Virgie - December 12

Hi GRee, could you change your doctor.
AGING AT 40!!! Thats ridicoulas! How old is she? Maybe get referred to a rheumathologist.

 

barbar - December 12

Yes, you seek another doctor who specializes in fibro. You, of course, retain your current doctor as your primary care physician, you just add another doctor. It may take a while to find the right one. If your insurance's nurse advised you about the firbro then your insurance company may have some doctors to suggest to you. You would normally be looking for a rheumatologist but not necessarily. If you google 'fibromyalgia specialists' or 'fibromyalgia doctors' you will come up with lists of specialists, some of which will be organized geographically. Always be careful to check them out and ask if they take your insurance. The advantage of having a doctor who takes insurance is that he has to convince the insurance company that you actually have fibro. That means he'll be doing the right tests, checking for the right things, etc. There are a lot of scam artists out there willing to diagnose you with fibro and take your money so be careful. On the other hand, most doctors who treat fibro do not take insurance either because they include more holistic or natural approaches or because they wish to spend more time with the patients than the insurance allows. So there are plenty of fine doctors out the who treat fibro but do not take insurance. Just know the right questions to ask. Also, if it looks like you're being prescribed lots of meds for fibro or for any other conditions you might also want to get a psychopharmacologist. They specialize in balancing your medictions. Good luck.

 

larry - December 12

Barbar- why did you suggest to GRee-..... "Yes, you seek another doctor who specializes in fibro. You, of course, retain your current doctor as your primary care physician, you just add another doctor. " Why did you recommended that? Especially after all that research on FMS that you just did and posted for all of us -referencing hormones. That article states " We need to allow a FMS specialist to be the patient’s primary care professional when the current primary care doctor is not familiar with fibromyalgia syndrome and the holistic care it requires." Are you reading the articles that you post?

 

GRee - December 12

my doctor is in her late 50's I have only been seeing her for the past 4 years, she took over my original dr's office when he relocated to another state. I respect my doctor that I see now and all 3 of my children and my husband sees her as well.

I make a check list of everyting going on with me and she still says it is my age. So I always feel like I am stuck. I did schedule an appointment with my ob/gyn I have seen him for 19 years and I am in need of a yearly check up anyways and thought I would disscuss this with him and see if he can point me to someone.

Virgie- I know what you mean about 40=old. I am in good shape and use to work out all the time, I eat healthy and take tons of vitamins and calcium and try to stay fit the best I can, my mental outlook is of a younger person but I have to be honest, with all that is going on with my body I feel like I am broke and can't be fixed now. I am to a point where I have to do something, I have teenagers that I have always been active with in sports and their social life as well but now I feel like I am taking from them because I can't get a second wind anymore.

I want to ask this question I know I am in the dark when it comes to fibro but my doctor made a comment to me that I have always been to active to have fibro, (I have known Donna for many years on a personal level) She said that people who are inactive get fibro, but I CAN'T find one thing to back that up!??

I am sorry for such a long post but I really am at my wits end her and feel like pulling my hair out!

 

JJ1 - December 12

GRee, is your current doctor a rheumatologist? Rheumatologist's generally specialize in fibromyalgia and I would see one if I were you (if your doc is a rheum. then you may want to find another one).

 

larry - December 12

GRee, yes- move to another doctor. Several people here have made comparisons of Fibro to being like cancer. It is a highly specialist whole body syndrome that goes untreated because our medical doctors are just not trainned to look at the body holistically. They have good intentions but most doctors don't see the whole picture thus we are all sick for so long. Your lady doctor obiviously has not been trainned his way and she hasn't done her research on Fibro. So you can stay and try to teach her about fibro but this could take you years but then you are dealing with the doctor's belief systems. I would treat this like cancer. If you have cancer, you go to a cancer specialist, an oncologist. You probably wouldn’t stay with your general MD and try to get them to understand cancer. I suggest looking for doctors that specialize in Fibromyalgia and ask them plenty of questions. Find out what their success rate is, how many people they have sucessfully healed, who are they, can you speak with the patients that have been cured, what's the timeframe you can expect until you are better. I would also check into their background, their trainng. Is their pratice based on conventional medicine, alternative medicine or both as in intergrative? Conventional doctors are not trainned to look at the body holistically, as a whole, and since this is a whole body syndrome a conventional doctor could have you spinning your wheels going to a GI dr., an orthropedic, an OBGYN, a neurlogist, psycharistic, podiatrist, ear, nose and throat specialist, etc., etc.. You could spend the next 10 years of your life running to doctors and still not have any one doctor put all the pieces together. However, just plain naturalpathic or alternative doctors might now always be aggressive enough to treat this whole body syndrome and some modern medicine does have its promises. I would look for a doctor that has an intergrative approach, understands the body on a holistic level and yet can pull out the top dogs in medicine when you need it. Since there are as many as 12 underlying infections in Fibro, you might need some strong anti virals and antibiotics to get you stabilized. We as patients need to self-educate, take the upper hand in our care and interview the doctors before we let them treat us. Good luck!!

 

Lynne-FT - December 12

Larry I have a ?? You state and I quote " there are as many as 12 underlying infections in Fibro" Infections show up in blood work as raised white blood counts, so why were all of my blood tests from a complete CBC, Chem7 (I think) my thyroid, FSH, I can't remember the other I think they ran 8 tests in all and all were normal except for 1 anemia (was not even low to be concerned about ) but the doctor ran 3 more blood tests in the anemia part to confirm nothing was causing the anemia except for the fact I am still having regular menstrual cycles.
Where are these mysterious infections hiding? How are they detected?

 

teresat - December 13

GRee, you can be refered to a rheumatologist by your primary care physician. In fact a lot of insurance companies won't pay unless you are referred. A bit of warning here ... the holistic approch to health care does work for some, but you have to very careful & do your research !! The brand Larry is pushing has already be proven to be a quick way to grab your cash & does not AT ALL sound safe!!! I would much rather put my heathcare in the hands of someone who has been to 8 yrs of med school & several years more into a specialty!!! Remember If it's to good to be true then it probably isn't! We have all been where you are now!!! Keep asking questions!!

 

teresat - December 13

As far as the inactive thing ... That's just NOT true!!! I & many other here have always been active!!! It bothers me that your DR is so dismissive! Has she done any testing at all? Has she even done the classic tender point test? There is a lot of helpful info in the list on the left! read it, print it, take it to your doctor!!!

 

larry - December 13

Hi Lynn, Here is some info that I copied from the fibroandfatigue.com site. They have 6 components to their program. The questions you asked about refers to their components 3 and 4. Here it is......Component Three: Balance the hormones ....
There are a number of hormonal deficiencies with these conditions that must be addressed to assure successful treatment. Unfortunately, these hormonal deficiencies are often missed or poorly treated because doctors have come to rely on standard blood tests that require an intact pituitary and hypothalamus for diagnosis and dosing of hormone levels. There is, however, severe hypothalamic and pituitary dysfunction with these conditions, making the standard blood tests inadequate. Some typical hormones functions, not just levels, that need to be evaluated include thyroid function, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolone, estradiol, progesterone, among others. When they are properly treated and balanced, tremendous results can be achieved. ................... Unfortunately most doctors still do not understand the complexies of all of the the thyroid hormones.

Component Four: Treat the infectious components .....
There are multiple infections that either may be the cause of CFIDS/FM or contribute to the dysfunction. Because of the immune dysfunctions, there is often more than one infection that must be addressed. Potential pathogens include a variety of viruses such as Epstein Barr (EBV), Cytomegalovirus (CMV), Human Herpes Virus 6 (HHV6), Enteroviruses, such as Coxsackie, Echo, and Stealth virus. Bacterial infections include intracellular organisms such as Mycoplasma, Chlamydia pneumonia, Borrelia Burgdorferi (Lyme Disease) and Ehrlichia. A number of yeasts such as Candida and parasites must also be evaluated. Infections with many of the above organisms will also further suppress the immunity, often resulting in further infections with other organisms. Thus, many organisms must be evaluated and treated along with an assessment and treatment of the immune system. If a poor immune system is not addressed, successful eradication of the organisms is not likely, even with the most potent treatments. Treatment may be administered with oral medications or via an intravenous route. A combination of IV and oral medication in conjunction with immune modulation is extremely powerful.
..............I posted some very detailed info on the thyroid bloodwork tests the other day, if you can't find it I will gladly track it down for you. I just went thru the testing for component 4 and was surprised on the findings. I am waiting until the new year to tackle these conditions. So far I have had great results on component 3. My pain in my feet, hips, shoulders and my carpal tunnel syndrome is now gone as a result of the thyroid/adrenal/hypothalmus bio-identical hormones. Good luck Lynn, self-education is the key.

 

larry - December 13

Lynn, My blood work always showed up normal as well. That is because of the outdated ranges that are used and - the status of the lab reading the results and - which thyroid hormones were tested and how well the doctor understands the relationship each hormone plays with the other glandular hormones. This is alot to digest, I know that is why I say that when I went to the f&f center I was delighted to find that they were on top of all of this and I could relax and quit playing doctor for myself -whereas I was always trying to get my other doctors to understand. I hope this helps.

 

larry - December 13

Here is another "cut n' paste" from the f&f center website. To me this is fascinating. This is component one out of 6 components......Component One: Stabilize the patient
This is a component in which pain and sleep disturbances are addressed. This may include the use of, sleep medications, pain medications and antidepressants. This is in general a temporary "stop gap" phase because as the treatment progresses and the underlying problems are addressed, the medications that "mask the symptoms" are no longer needed. Unfortunately, the overwhelming majority of patients are never brought past this stage by their doctors. This is because this component is the limit of training for most doctors, but it really should only be the first step.

 

barbar - December 13

GRee, how are you doing? Have you found another doctor? Have you tired bringing material from the major journals on Fibromyalgia to your doctor to educate her?

 

CarrieLee - December 13

Hi GRee, sometimes doctors are clueless. My doctor didnt give me a diagnosis for years, just kept giving me pain & sleep meds. If the doctor is not giving you what you need ask for a referral to a specialist. It is easy for her to say... its not HER body! Hang in there!

 

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