Fibro is so Damned Misunderstood?
Fibromyalgia is not a new illness by any means, there are records dating back even 200 hundred years ago. In fact many historians believe that the famous nurse Florence Nightingale suffered with fibro.
Firstly, I’ve spoken about the fibromyalgia merry-go-round. to refresh your memories or if you hadn’t heard me speak of this, the merry-go-round is as follows. You body seems to not be functioning well with all kinds of symptoms, from pain to fatigue, in fact I’ve compiled a list of 63 symptoms and I’m sure that there are many more.
You go to your family doctor, who takes your history, does some tests and blood work and can’t find a thing wrong, so he recommends some anti-inflammatories which don’t help much as fibro pain is not caused by inflammation. The doctor than sends you to an orthopedist where an MRI or perhaps a Cat scan is done, looking for something or other, but again comes up blank. The doc might than send you to a Physical therapist and low and behold, the therapy causes the symptoms to become worse. Back you go to the orthopedist, who than send you to a neurologist and they rule out Lupus, Rheumatoid Arthritis, Multiple sclerosis and other neurological illnesses (all which can be seen by blood work or imaging. Problem is you again come up zero.
You are than sent to a Rheumotologist (if the doc is savvy enough), and he/she ultimately does the tests where they touch 12 to 18 trigger points and if these points are painful, the diagnosis becomes Fibromyalgia. (By the way, studies have shown that the trigger point test is not an indicator of fibro and very recently has been discounted in the research in very strong language).
However, now that you have a diagnosis, what is the next step? Lyrica, Cymbalta, Savella, Tramadol, on and on. the problem is that to date, there has not been one medication developed for Fibromyalgia. Lyrica is an anti-seizure med and Cymbalta and Savella are anti-depressives. The pain might become so bad to where you now using narcotics such as Morphine or other very intense pain killers and the interesting thing is that after a while, these don’t work either.
You go around and around and just can’t find a solution, you live from day to day never knowing how you’ll feel, some days you can’t get out of bed, other days, you can’t think straight.
Probably the most insulting aspect of Fibromyalgia is being referred to the Psychiatrist, who has the gall to tell you that it is in your head, it is psychosomatic etc. The fact is that this is just plain incorrect as many studies have shown countless times.
Another problem which occurs is that there are still Medical Professionals who will tell you that they don’t believe in Fibromyalgia, that it does not exist. Again, this is plain incorrect as the literature is clear that it is a very real illness. Why do they say this. My guess is that they don’t know what to do with it. Most doctors (from my experience) really do care about their patients, but as in all professions, there are the good and not so good. The not so good will say it does not exist out of ego.
There is a peculiar situation where some Doctors believe they are the authority on every ailment known to man. These are the ones who generally say that fibromyalgia does not exist and my advise is to immediately fire this doctor (yes, a Doctor is your employee), and find another one.
Therefore, you’re find yourself on the Fibromyalgia Merry-go-round.
So what do you do? One of the big problems is that there is so much misinformation out there, not only with the public, but with doctors, that you’re stuck and don’t know who to turn to. Meanwhile, you are becoming more and more depressed. You’re family is backing away from you as are your children and friends, (In fact, it is said that a way to find who your real friends are is to develop an illness).
1 Support groups can be very helpful, however the key is to find the right one. You want a group where the people are uplifting, supportive and have an affirmative attitude. A group where everybody is constantly whining and complaining will just make you more depressed. From my own experience running groups, I’ve concluded that it is up to the monitor or head of the group to keep people on track, to keep the conversation on a positive note. This can be done as I do it all the time. When the group is good, people will leave with some optimism, with tools to help them research their illness and without a depressed feeling. Therefore, if you find that a group is “a downer”, don’t return.
A support group might be run by a local hospital, but this does not mean that it will be good. Ask around, speak to some fibro people you might know until you find a comfortable group. they really can be a god-send.
2 A good psychotherapist is worth their weight in gold. Again, there are good ones and bad ones. You want a therapist who has much training not only in chronic illnesses but in fibromyalgia as fibro is really so unique. Psychotherapists came in many varieties, Psychiatrists, Psychologists, Social workers, Family counselors and many others. Again, the key is to find one who knows Fibromyalgia and who you feel comfortable with. It takes a bit of work to find the right one, but it is well worth it.
3 Be wary of all the ads you see about this one or that one having the cure. There is an old expression (attributed to astronomer Carl Sagan, but really going back much further, that extraordinary claims require extraordinary evidence. I do run a fibro clinic and have seen many recover, but I believe that I am a rare one, as I’m always looking for other Docs who do similar work. Unfortunately I generally just see docs prescribing tons of meds and alternative healers (Acupuncturists and Chiropractics) making claims but not being able to follow through. In fact, a wrong doctor can actually make your symptoms much worse, so be careful.
4 Never doubt yourself, no matter what others may think or tell you. You sometimes have to develop a strong skin, but you are the one with the illness. don’t let yourself get bullied and do not push yourself.
5 Slow start to separate yourself from people who are not good for you, you kno0w..the ones who criticize, who are negative, who never have a positive thing to say, who are always complaining. This is the last thing you need in your life!
More to come: