Why is There No Professional Educational and Support Groups Included with the Diagnosis of Fibromyalgia?

Hello Peers,

This has been my passion to create, or one day discover this type of group included by my physicians group, for over a decade. A perfect example is when we have loved ones diagnosed with diabetes, heart conditions, even ongoing back pain their doctor often recommends educational classes. These classes are very often included for free as part of their insurance or the clinic. There are often end of class support groups for those who feel the need to continue sharing and learning about their chronic illness. When it comes to pain conditions, the options are physical therapy and, often, being sent to a pain management doctor.

The physical therapy can help some to increase movement, which may help reduce pain, similar to the need to exercise. Physical therapy for fibromyalgia has a end point, generally after a very limited amount of visits. Of course, one can pay a large fee out-of-pocket to continue.The pain management doctors I have heard Peers speak of in the last five + years, seem to have a focus on reducing pain medications and trying to find a “different” illness; can you say depression? These specialists insist on seeing you for many months and discuss relieving the syndrome (seemingly for life) by relaxing, increasing positive activities and taking depression medication. This is the sum total of what I have encountered or heard about for the education needs of persons living with fibromyalgia.

There are numerous fibromyalgia associations, networks, forums, awareness and research sites on the internet. These are not to be overlooked as supportive and educational for us. There are also many fibromyalgia groups held in cities and towns that we can join. Many of these groups that I have found meet once a month. Personally, I need support, outside of my family and friends network, when I need it. Waiting a week would be fine. Waiting a month is not. Additionally, there are therapists who specialize in chronic pain; whether they actually have it or are just specializing in this niche is not clear. There are even internet sites that offer exercise programs for us (I posted one based on research in a earlier blog post, it is not free but is inexpensive).

Now that the sources of educational and support are discussed, to the best of my knowledge, I am returning to the question, “why don’t we have these resources provided by our doctor groups”? I performed a internet search seeking clinics for education for fibromyalgia before beginning this post. You should enter a similar search. There are a few alternative clinics that you check into but it appears that their focus is on alternative methods, some of which, like guifenesone (cough syrup), kerosene and turpentine, are potentially dangerous! Could it be reasoned that it is cheaper for our doctors based on the pharmaceutical companies to prescribe anti-depression medications than to spend money on educating newly diagnosed Peers?

In performing another internet search to research anti-depression medications prescribed to chronic pain suffers and fibromyalgia syndrome I went through five combinations of search words and page after page to find answers to this. I was able to find that, yes, pharmaceutical companies are skyrocketing in profits but virtually every search and every page I examined determined that depression causes pain and pain causes depression. This is telling us that fibromyalgia suffers are depressed!  Every site recommended taking these reuptake inhibitors to decrease depression and increase serotonin levels. Here I will agree that research points to a lower level of serotonin in our brain; depression or sad due to daily pain?  Every site also recommended a strong decrease or complete stopping of the use of pain medications.

I am not a expert on anti-depressant medications but I am one of the many people who can not tolerate them. Others get some or quite a bit of relief. This does not mean they don’t also take pain medications. Let us examine this from a monetary point of view and pain combined with having depression. Pharmaceutical companies still hold their ten year patents on the newer medications, Lyrica and Cymbalta. These are prescribed at amazingly high rates. The stand to lose money once the generics come on board, so selling them now is very important. Additionally, the FDA just decreased the amount of daily Tylenol that is safe, creating more fuel for the fire for our doctors to stop prescribing potentially addicting pain meds. The burden to follow the FDA rules fall onto our doctors and our pharmacists. This creates a perfect storm for the companies to make lots and lots of money. So, what is the problem? If anti-depressants work for some who indeed have depression that is more than just mild or occasional and pain meds are potentially dangerous this is not only a great marriage for profit but will help those with these issues.

If you take the time to research Cymbalta and Lyrica, or just watch their commercials, the subtext that runs in a long list includes watching for increased suicidal thoughts! In discussing this new treatment method we are also going back to that old which came first, the chicken or the egg tale. Most Peers I interact with have very little depression after they find their personal path to live Well. The problem is this may take a few years. Physicians who are taking the easy road and prescribing these medications after just a few visits are not taking the time to get to know us as individuals. This, finally, brings back this post to education classes. We deserve to have them just like any other chronic illness/disease. We need to create clinics where trained specialists and Peers work only with those who have chronic pain. We need more support, more often.

I can not dispute addiction issues; this has been addressed previously. I can object to lumping us into one pill package, and I do.

On a rant today,

Lucinda Tart, Fibromyalgia Peer Advocate/Living Well Coach


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