So long story short, I probably need to find a new doctor, I basically called my current one an idiot. Ive been trying to narrow things down from research, looking at family history, and when I bring up family history or suggest anything being like a deficiency or attributed to possibly meningitis as a baby, the doctor just scoffs and suggests my issue is something more obscure ...like fibromyalgia which is almost unheard of among males, and refers me to another doctor that just basically says "sucks to be you, deal with it". So, here I am, Im looking at figuring it out myself.
I want to get a few blood tests done and maybe an MRI or EKG. A few possibilities fit, but things overlap. So, its either try to submit bills to them myself, find a cooperative doctor or hold one against their will...
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KayK's running mate
posted: Aug. 11, 2016 @ 5:08p
1) find a doc that will work with you.
2) are they expensive tests? If not order them yourself. Not sure on the legal status in all the states but it's a service that online labs and some traditional labs offer now.
3) if you can order yourself and your insurance will allow you to claim a self ordered test (big big ymmv), you can order it, pay for it, and submit your own claim.
4) if it's am expensive test that your insurance has conditions for or even require a prior Auth for, you really need to double down on #1 and not only find a doc that will work with you but will fight your insurance Co for you.
5) all labs will generally do common tests, but some advanced or specialized tests may only be done by 1 or 2 labs. They may have different names too. It can be a minefield.
An ekg is easy to get,along with a chest xray. Just go to a doc and tell him you have pressure in your chest. Like bad persistent heartburn. They should order a chest x-ray and ekg to rule out heart issues.
Toss the proton pump inhibitor prescription in the trash after the doc determines your problem is gas
a) While fibromyalgia is is almost unheard of among males, there are men who have it. Did your doctor even do a tender point exam and order blood work to rule out other possibilities, or did the doctor just throw the word at you without any exam and exclusionary lab tests?
b) Was your doctor an MD? If so, find an OD (Osteopath). After having an osteopath where I previously lived, I chose one where I moved to. I would never go back to an MD (Allopath) as a primary care. Osteopathic medicine is so different, the approach is holistic, and they take the time to really listen to their patients. Osteopaths are like medical detectives, they will search for answers if neither you nor they are satisfied. They tend to be more compassionate and caring, and less clinical.
1. The issue is I'm in Illinois...doctors already are moving out of here from the malpractice insurance and everything. But, my wife's doctor is super conservative, old school, prescribes prednisone for like everything. Working in a factory, and it being summertime, I'm not going along with that approach...prednisone makes you feel like you're in 20* hotter weather than you already are. I think the OD approach makes more sense, as SweetClover is talking about it. Medicine isn't a divided practice as normal medicine treats it, too many issues are intertwined and affect each other. When I was sent to the pain doctor and they were talking about burning nerves in my back, I was just thinking about how pain is supposed to be a sign that something is wrong. It's a symptom, not the problem itself, it should remedy itself if the underlying problem is fixed. Besides, nobody is jamming a needle or burning anything around my spinal cord. I don't care if they claim it's "safe".
2. Apparently vitamin D and magnesium are common deficiencies and either/both could explain the "fibro" type symptoms...somewhat. It's cheaper/easier trying supplementing it to test that theory, so going outside and taking magnesium my wife already has, has helped, so hopefully that would at least be more justification in ordering those tests...or say screw it and accept that as proof it was already low and that's just remedying it?
And no, he didn't do the 18 point test, didn't do any further tests for other issues, he just kinda jumped to that conclusion. That's supposed to be a last resort diagnosis when nothing else can be found. I think he was just kind of blowing me off and trying to get rid of me since as he said, they have pills, but they don't have much else to help.
Did that pain doctor do any tests prior to suggesting burning nerves in your back? The procedure is called Radio-Frequency Nerve Ablation, and I had it done in the lumbar and cervical/occipital areas. But 1st you have to be a candidate for it. 1) You need an MRI. 2) You need to have lidocaine mixed with cortisone injections, the lidocaine is a 'test' agent, if you get relief for hours after the injections, it means the doctor hit the right nerves. If not, they repeat it. The cortisone is to treat the inflamed nerves after the lidocaine wears off. 3) Some doctors will also do a nerve conduction/EMG, this helps to pinpoint the source of the pain, is it soft tissue damage due to muscle or cartilage damage, or is it nerve pain from pinching or acute inflammation. Nerve ablation only works for the latter, physical therapy should be used for the former. 4) If the pain is primarily nerve-related, and the lidocaine injections give relief, then the ablation is done. The needles don't go near your spinal column, they Target the peripheral nerves that branch of from the spinal cord. They use a fluoroscope to guide them in positioning the needle for both the injections and the ablation. The doctor who did mine is one of the top 100 physiatrists in the country, I am now weaning of the narcotics I was on, and will no longer need them. I still have some pain, I use a topical Lidocaine 5% ointment. If the doctor who suggested burning your nerves, didn't do any of the steps I outlined, I wouldn't want him doing an ablation on me either.
Low Vitamin D can cause Osteomalacia, the most common symptoms are pain in the trunk area, your hips and thighs. Low magnesium can cause an overwhelming feeling of fatigue, much like fibromyalgia does. If you went to either of my osteopaths, and complained of widespread pain ans fatigue, both would have ordered tests looking for deficiencies in various vitamins and minerals. If they showed no deficiencies, then they'd followup with an array of viral ailments known to cause fibro-like symptoms; things like Guillain Barre, Cytomegalovirus, Epstein-Barr, Lyme Disease, Rocky Mountain Spotted Fever, and a few others I can't recall. They'd add a Sedimentation Rate and a check for inflammatory markers in the blood, and a white blood cell count. These are the exclusionary tests they run, and only when they come back with certain results is fibromyalgia often diagnosed. A thyroid test is also a standard as low thyroid can also mimic fibromyalgia.
See if you can find an osteopath, even if you have to go a bit further to get to one. You could try a rheumatologist, who would also run the blood work needed. Some insurance plans require referral from your primary care doc to see a specialist. If yours doesn't, you could seek out a rheumy on your own.
BTW, I happen to have fibromyalgia, I'm told the trigger was an auto accident that left me disabled. Years later, I developed worsening symptoms, and was found to have Hashimoto's Thyroiditis, and a deficiency of magnesium and Vitamin D. I take Vit D supplements, and now only take magnesium once a week. I also have bone spurs and disc herniations in my spine. I found my own way to keep the fibro at bay, and how to deal with unexpected flares. I use Turmeric because it contains Curcumen, a natural anti-inflammatory that won't mess up your stomach or be a risk to your heart, like NSAID's. Take 1000mg daily.
SweetClover said: fibromyalgia is is almost unheard of among males How is the average lay person supposed to know this? Must see a half dozen Lyrica ads a day and none of them mentions its only for women.
atikovi said: SweetClover said: fibromyalgia is is almost unheard of among males How is the average lay person supposed to know this? Must see a half dozen Lyrica ads a day and none of them mentions its only for women.
I guess the average layperson doesn't keep up with statistics, while doctors do as part of their research and treatment. Men who do have it tend to be more severe with the symptoms. Someone I knew years ago was seriously impaired, and forced to go on disability. He also put up with a lot of ribbing from others, he was made to feel less of a man. I suspect (and medical professionals do to), that men are widely under diagnosed, because there is a stigma attached to it, as it is a 'women's disease' or they must be weak.
The people selling Lyrica are selling a drug that helps some fibro patients - while the majority are women, men and children have this too. Also, much of the testing to approve Lyrica for fibromyalgia use was done on female patients because they are more readily available. I tried Lyrica, and just didn't care for the side effects. I worked with my Osteopath to find alternatives, Lidocaine Ointment 5% and Turmeric 1000 mg have really helped. Lyrica has also been used to treat different types of neuropathy, and is even being used for back pain caused by pinched nerves (like sciatica).
Your doctor sounds like a quack. First step would be finding a better primary care doctor. Or, if your insurance allows it, refer yourself to a competent specialist. Do some research and find someone with excellent credentials.
The primary care doctor just did some preliminary blood tests (CBC, metabolic panel, cholesterol, ANA, and arthritic panel) and when the Epstein Barr test came back showing that I had it at some point in my life (VCA IgG antibody test shows pos if you're like 90% of the population and had an Epstein Barr infection EVER in your life), and prednisone didn't do anything (surprise surprise since I showed no other sign of infection), he concluded it had to be fibro. That's like one of us concluding that feeling tired has to be cancer because you don't have a cold.
What it looks like to me, is a lot of these disorders that involve pain...migraines, fibro, etc all are treated with some kind of antidepressant type medication. What I'm wondering is whether that's just how they deal with the pain, as opposed to using optiates and such, which operate differently, or if it's an attempt to counteract low levels which are to blame for the issues in the first place? If cannabis (THC) mimics serotonin and effectively helps most people, and apparently especially the "Triptan" class antidepressants are effective for migraines since they're 5HTP agonists, it would make some sense. And low serotonin levels are characterized by depression, anxiety, poor appetite, issues sleeping (also symptoms of magnesium deficiency), the exact opposite of what an increase causes...elevated mood, hunger, sleepiness... I'm simply wondering what the missing link is between maybe causing a low level, requiring medication to correct it to treat the migraines, pain, anxiety, poor appetite, etc? Working backwards, it looks like serotonin is produced in the digestive system. Is it wrong then to wonder if that means a low level in the brain stems from a digestive malfunction or deficiency?
I know I should just research it more, but at least as of taking it two days in a row, the turmeric doesn't seem that effective...but maybe it needs more time too, or maybe it's not an inflammation issue for me. Something I ran across was the theory that Fibro can be caused by an overabundance of "substance P" and capsaicin could help excite it then deplete it's levels to control the pain. http://www.prohealth.com/library/showarticle.cfm?libid=17138
Fibromyalgia is a complicated diagnosis, because doctors can't pinpoint exactly what it is, and what causes it. Well, at least you got some blood work done, you had Epstein Barr, and the arthritic panel didn't show anything. I don't get why you were given prednisone, especially if your PCP keeps saying you have fibro???
Antidepressants have helped with some pain disorders which are nerve-related, which is why Lyrica is also used. While fibro was initially thought to be a rheumatological disorder, researchers have been leaning towards it being a neurological disorder in which the nerves experience nociception in the absence of any stimuli. I did try trycyclic antidepressants, and later SSRI's. They helped, but I didn't care for the side effects of either.
The Substance P theory has been around for a while. Tried the capsaicin, but found it to be irritating and non-effective. Using Lidocaine 5% ointment is the same effect as capsaicin. There is no one-size-fits-all treatment for fibro, it's a matter of finding what works for you. Turmeric needs to be taken for a few weeks before you realize it's benefits; like an NSAID, it is both an anti-inflammatory and a pain reliever, because Curcumen is in itself a type of NSAID. You have to build up a therapeutic level in the bloodstream, for it to be at it's most effective point.
If you doctor keeps insisting you have fibro, ask for a referral to a Rheumatologist. And make sure the doctor's office either faxes over copies of the lab results or gives you copies, prior to seeing the rheumy. Start with the rheumy, if the rheumy can't find anything, you'll be sent to the neurologist for evaluation. One of them will hopefully order an MRI.
You have to be your own advocate and do your own detective work. This is why I love OD's, I have discussed treatment plans with my OD PCP, and figured out what worked for me. But another patient will have different results. A neurologist I saw suggested Occupational Therapy, said I probably didn't need to see an OT, but do some research online and learn about joint protection techniques, and using tools, plus adapting to different ways of doing tasks. The idea is to not overuse/over-stress joints, so they don't become inflamed and/or hurt.
You write that "low serotonin levels are characterized by depression, anxiety, poor appetite, issues sleeping" in an obvious reference to the popular serotonin-as-the-happiness-molecule theory launched and marketed by corporate medicine.
Yet a sizable volume of sound research studies demonstrated that increasing serotonin and tryptophan either with drugs or supplements (not food because food's unlikely to significantly raise serotonin) is linked to brain dysfunction, stress hormone release, cognitive deficits, inflammation, impaired blood circulation in the brain, hypertension, cancer, and other less than "happy" effects - http://www.supplements-and-health.com/tryptophan-side-effects.html
The "serotonin-happiness" mantra, just like the mechanistic simplistic "chemical imbalance" idea, seem to be almost entirely an all-too convenient invention of the medical-pharma business, which allowed them to sell their highly profitable antidepressant drugs, such as SSRIs.
That PCP just got seriously offended if you asked anything insinuating he may not be completely right. Since I wanted to be prepared, I asked my mother about any medical issues that run on that side and among the list was parkinsons, dystonia, familial spastic paraplegia, anxiety and depression, cancer. Apparently the first 3 commonly include anxiety and depression, and FSP looked like a close fit. Bringing that up, the doctor rolled his eyes and insisted it wasn't. He insisted it was Epstein, prescribed prednisone and I asked if he really thought it was all due to Epstein because I had spent 5 hours a day reading everything I could find when it was theorized my wife's issues were due to it...which I earlier predicted was autoimmune, like Lupus, and...I surprisingly nailed that one, but that's beside the point.
I'm going to give the magnesium and turmeric a couple months and see how it is then before considering dealing with doctors again. They're too expensive to rush me in and out, talking at me, and then billing me $100-200 after insurance to accomplish nothing at all. Self medicating is frowned upon, I know, but like with cars, trying the cheap, easy option first makes the most sense... Capsaicin seems to help if I eat enough really hot food, or the cream, but it seems more like the idea of smashing your finger to forget about a cut, type of deal.
While I strongly advocate for medical MJ, it's just not an option.
The chemical balance theory is kind of BS, very much agree. I have tried SSRIs and recently Trazodone...screw them all. I believe there's probably some truth to the idea of levels being off, causing issues, but their approach pretty well sums up what they know. Try one, if it fails and you didn't kill yourself, try another until they find one or you do kill yourself.
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