Fibromyalgia
And Doctor shopping
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We, with FM are often accused of "Doctor shopping" meaning going from one Doctor after another. Well, in point of fact, we often do ... for many reasons ...  but mainly, mwe are trying to find a Dr. that will A: Believe what we tell them, and B: Knows how to do something constructive about it.  As the simple facts are your average General practitioner, is often not equipped or trained to handle all of the issues that FM presents.

Given as there are very few FM specialists, we are forced to make do, often with a PCP as primary ( often a Rheumatologist ) and will require an entire team of other specialists, along the way.

Now, we often find ourselves in the position of having to "fire" our Doctor and find another, as we were assigned them by our HMO for example and then we find out they have clue one on dealing with FM. If in fact they even believe that the disorder is real.

Or, as happens far too often now, they tend to think that all they have to do is toss one of the "approved" drugs for FM at us, hand us a diet and exercise sheet, and we will get out of their office.

Now, such drugs do not work for everyone for starters and often cause more problems than they resolve for many. So we may say no, we are not taking any of those, ( as we have already tried them, or we feel that their failure rate is too high ). And while we might agree that 
diet and exercise are all well and good, we also know they will not cure FM. Anyone who has had FM for any length of time, knows this to be a fact, as we have tried both diet changes and exersize to no avail.

So, if that is all they have to offer and it doesn't work ? T
hen they are lost, as that is the sole extent of their understanding of the problem. Not to mention that the approved drugs, even if they work for us, do not handle all of the other issues that tend to tag along with FM. ( see other diseases and FM the overlap on site link ) The list of reasons we might fire a Doctor and go seeking another, is almost endless.

Things like:

  • Not listening when told that X medication, is creating too many side effects

  • The Doctor expects us to take more medications, to counter the side effects of the first ones

  • Not listening when told that X medication, does not work

  • Not listening when told that X medication is making matters worse

  • Not hearing our complaints as valid, or dismissing them, entirely

  • Not treating co-comitant diseases, even though they are provable on lab work and testing

  • Not treating anything new that comes up, assuming it's all the FM, and thereby, endangering our health

  • Blaming us and saying that we must be non complaint to their orders, when everything they try, fails to "cure" us

  • Will not refer us to specialists, even if the need is obvious

  • Will not order needed tests, if they have to be done outside of their office

  • Refuses to sign papers for Handicapped plates, or HC discounts

  • Will not commit to, on paper that we are disabled, say for SSI or SSDI

  • Does not consider our, "quality of life"  in their care of us over all

  • Refuses to prescribe aids that will help us in day to day living

  • Refuses to see us, more than 3 times a year

  • Attempts to send us to a Psychiatrist, when we are not depressed

  • Insists that all we need is a good diet and some exercise

  • Does not even remember who we are or what our issues are, from visit to visit 

  • Refusal to address pain management and so many more ...
So, as you can see, these are all very rational and to our mind, valid reasons to drop a Doctor. In fact, a lot of them would be good reasons for most people to "fire" their Doctor.

As we will, given reason, fire our current Doctor and seek out another who is better informed and is more willing to try and help us. As all of the above and more, represent major barriers to proper health care ( Barriers )

Now, the trouble comes in, when you consider how the medical society views such "shopping" around, especially when coupled with our often made demand, of something that will handle the pain of FM, we are seen as "drug seeking".

Which is a rather two sided sword, as for one, well .... we often are seeking, but for very good reason and
if our current doctor refuses to help us with pain management, then they are not of much use to us. However, this failure to aid us in pain management is seldom alone. As any doctor who ignores our pain, quite often is guilty of many of the other failures that are listed above.

Despite the common thought on the matter, pain medications are not the only reason we hunt around for a good Doctor. As I said before, your average general practitioner is not trained or even really qualified to deal with everything that FM presents, therefore, other specialists, often a large number and variety of them, are needed. We also need, in order to be cared for properly, a lot more tests than most people and we will need our medications switched around rather often.

Now, this idea, seems to, for lack of a better word, scare a lot of Doctors. For one, they tend to get rather "proprietary" about their clients and do not want to "share" them with anyone. It could be considered a matter of the money for their fee's they do not want to share, but I feel it is more a matter of not wanting to share authority. If another Doctor is in on the case, they have pay heed to someone else's opinion, which may run counter to their own. Let's face it, some doctors are just not "team" players.

Not to mention, switching drugs around makes a lot more work for them. They like to be able to give you X list of meds and then just monitor you from time to time. Well, that does not work very well with us. Medication extinction, meaning drugs that lose their effectiveness in short order, is a major issue with us. We can easily develop allergies, even to things we have been taking for a long time and moreover, we have a pretty low tolerance for any drug, that just makes matters worse for us and will demand alternatives.

So to sum up, we need a Doctor who A: Understands the disorder, or is at least willing to bone up on it and B: Realizes the need for a multi Doctor approach.

Anyone with a diagnosis of long standing tends to get pretty good at assessing a Doctor, in fairly short order. In fact, we often spend our first visit with them, grilling THEM on what they know ( or we should. ) We have been disappointed far too often, not to take such a stand and quite frankly we do not want to waste our time with a Doctor who is not going to even TRY to give us the treatment we need and or, does not understand the problem.

Now, often times we are forced to put up with poor Doctors for a while, as many health plans state that you can only change Doctors X number of times a year, or at certain times of the year. But as soon as we can, we tend to drop them like a hot rock if they are not being helpful.

Suggestions:

Find the social services department of your clinic and make an appointment. As very often, they know their Doctors in their clinic, best. Tell them point blank that you need someone who listens, someone who cares, someone who is not afraid to have another Doctor(s) in on their cases.

First appointment:

Do talk, honestly to your new Doctor, about your needs, your expectations and question them on what they know about FM and how they would attempt to treat you.

Make lists:

By this I mean, have a total list handy of every medication you are on, herbs, vitamins etc.  Ditto any allergies. The same goes for whatever surgeries you have had, major illnesses. What tests have you had done ? In short, a thumbnail print of your own medical history, should be at your finger tips at all times, when dealing with the medical profession.

This way they will know, what medications NOT to give you, for one. They will not repeat costly tests, if they have been done recently for example. Now many medical systems, keep track of all of this for us now a days. But do not assume that any new Doctor you are sent to is going to have access to those records. Have them with you. Also, make a list of whatever current issues and concerns you have for any Doctor, every time you see them. It saves a lot of time and you won't forget anything that you want to address.

Do not be afraid, to "shop":

Given the very negative view the medical society has for shopping around, we try not to do it, as we know the impression that it gives. Even if our reasons are quite different than those who have a half a dozen Doctors for the sole purpose of getting enough drugs, to abuse. ( This is happening a great deal less, as pharmacy's are often linked to each other and can " compare notes" So this idea will hopefully pass out of being and stop being an issue for everybody )

But in any case, do not be afraid to "fire" your Doctor. You hire them, and then ALLOW them, to try and help you. Their sole reason for being, is to help you and if they are not helping, they are not doing their job. In any other employment, if you are not doing your job ? You get fired, so do not fear to fire them as needed, until you find one that is willing and able... to help.