Fibromyalgia treatment and burden of illness

Fibromyalgia treatment and burden of illness - There are so many things about this that drive me nuts.

Firstly... my own personal experience- I have had very little fibromyalgia treatment. Almost nill in fact. Really you might as well say any treatment I have had I had sought out myself. Alternative therapies, massage therapy, herbal therapies, diets... I researched it and I tried it. No guidance. No nothing. I was diagnosed by a specialist and I Never saw him again Ever. I think that was 13 years ago but it might have been a little more.... I can't quite remember if I was 22 or 21. The timeline is hazy. Anyway, in all that time no doctor ever gave me any FM medication or treatment. Occasionally a symptom that got specifically severe, like IBS-D would be addressed, or a new symptom like eczema would be diagnosed and addressed and put into the 'FM BOX'. Or I would mention something and it would be put in the 'FM BOX'. The only two times that were different were this: my last neuro about five years ago put my on Lyrica as a migraine preventative because a) it is a off label migraine preventative and b) I have FM and c) since I have both treating both might be beneficially. Brilliant deduction my man. I thought of giving him an award or something. Second situation since I have pervasive sleep issues due to FM I also have sleep deprivation all the time, which was apparent from all the sleep paralysis I was getting and so forth and sleep deprivation was triggering migraines at night and in the morning frequently so my doctor at the time prescribed me a sleeping pill. And finally I got some sleep, not a lot, but a whole lot more than I was getting before. So two migraine related things coincidentally helped me with FM. Other than that.... nothing directly related to FM.  Oh wait, that same neuro also put my on Cymbalta, with the Lyrica to see if it would do even better for migraines and FM... sadly, had a very bad result for me, but interesting idea.

So my story is.... no story. I wish I had seen a specialist again. I wish I had some guidance. I wish there had been a plan of action. Something early on to guide me along. Instead of me floundering around trying to figure it out. And I gave up on doctors when it came to FM. I just let them focus on the migraines like they clearly wanted to do... because they understood them. And FM got left behind.

What is the story of other people? I bet some are like me. But clearly the story is one of complete and utter inconsistency. They have no guidelines for what drugs to use... they have a huge pool of drugs they choose from... some of them so off label it is insane. They don't even agree on the non-drug therapies so they are not even consistent, often choosing the ones with less evidence to support them. They don't seem to be choose the main FM medications as often as they should be, at least to try first. And patients over seventy percent end up with 2 to 4 meds.

And with all this inconsistency? With all these different random med choices? The burden of illness is still very high.

Hmmm I wonder why? Wrong meds? Too many meds? Too many of the wrong meds? The right meds with the wrong therapies? The meds are just not working?

I'll tell you this... they need guidelines. Proper plans of action. These are the meds you try first. These are the meds you try next. These are the go-to therapies that are most effective. An action plan. Consistencies. No weird off the wall off off label drugs.... unless you need to get to that point because lets face it migraines have no preventive drug For migraines either so you gotta do what you gotta do when the regular go to list doesn't work.

And much more research on the effectiveness of the three FM drugs as well.

So no treatment isn't good. And over-treatment isn't good. Effective treatment would be nice. Let's aim for that shall we?

And after saying that... one of these days I ought to see a specialist again. it has been so long I have no idea what they even recommend for FM these days.
Post a Comment

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...