How to deal with extreme physical pain

In my case I had to tell people because I was quitting my job to have the procedure done. Some opinions from people in the healthcare field (nurses, etc) said I didn't need surgery because I wasn't overweight or old. Well they weren't maxillofacial surgeons.

FM is young. Keeping up to date on it is something I'll leave to my specialist, living with it doesn't require knowing the latest or greatest, so I don't find it disparaging at all.

I mentioned the FM/a test in particular because it's FDA-approved under 21 CFR 866.5700 [0] back in 2012, which generally means it has moved beyond the experimental stage (the notification exception is because it isn't a take-home style test, only a doctor can use it). There's another blood test in the early experimental stages at Ohio State (Stage II) as well, and one from Oxford (Stage II) at similar stages.

Unfortunately, you'll find that the Mayo Clinic doesn't tend to keep up to date, either. They provide some good high-level information on the disease, but because of how young it is, the effort required to keep up to date on a deeper understanding, such as diagnostic options, is probably not worth it to them.

That and a lot of research into fibromyalgia runs into walls and funding problems. We don't have a great understanding of the disease, but we're getting there. The stigma of it being over-diagnosed is probably the most harmful part to research, when that no longer seems to be the case.

[0] https://www.law.cornell.edu/cfr/text/21/866.5700

Where you live, and how the disease is impacting you, will change the answer.

Rather than issuing an institution name, because we likely live in different countries, it may be better to look at what kind of specialist you would be seeing, and perhaps adjusting expectations a little.

I know that it is common in the US to be assigned to a rheumatologist for treatment of fibromyalgia. This isn't the norm the world over, as they _may_ not have all the necessary experience. Rather, you may find it more helpful to see a Pain Specialist (actual doctor title), who can help you with the symptoms you experience. My own Pain Specialist also specialises in fibromyalgia. I also see a Physiotherapist who specialises in fibromyalgia, and a psychologist who specialises in chronic pain. All three regularly send each other reports. My general doctor isn't involved in the treatment of the illness, it's a specialist condition, and they are not. They'll always defer to the Pain Specialist.

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However, the biggest part of the question "haven't had any luck with treatment options of fibromyalgia" comes down to your expectations.

FM is a chronic illness, that has both flare-ups and relapses. For many sufferers, but not all, there is _no_ expectation that they will ever be able to reach a level of normality. There is however, an expectation that you may go backwards every few years in what you are capable of, and what you are experiencing, regardless of whether or not you are capable of achieving near-normality.

This is not an illness that can be "cured". For a lot of people the best that _can_ be done is to make it tolerable to live with _most_ of the time. If the treatment is taking the edge off, but you still find yourself highly disabled - that's normal.

A very few number of people can return to near-normality, but for most sufferers, that's never going to happen. It doesn't matter what combination of medication/physio/diet/lifestyle regime that you're on. The illness is pervasive, and may affect all areas of life. However, without such a regime, you may suffer more than is strictly necessary.

Having a team of specialists that communicate is probably the most helpful safety net.

I had the same path as you — infection, antibiotics (through an IV), and then a few weeks later the pain sort of disappeared! Now and then I wake up with the same pain, maybe twice a month, and it lasts for 1-3 days. But otherwise it's mysteriously disappeared. (I feared it may have been torsion/Bell Clapper Deformity or something like that.)

I think you may find this article interesting: https://www.health.harvard.edu/blog/finding-help-for-pelvic-.... There is another article I found where two doctors noted that men in high-performing careers (ostensibly with a lot of stressors) often complained of chronic testicular pain. They had developed this sort of massaging device [...] which worked remarkably well for their patients, some of whom had even had testicles removed because of the pain, but oddly I can't find it now.

I've been seen at Stanford by Dr. Jaradeh in autonomic neurology, who found delayed orthostatic hypotension with sparing of the parasympathetics, caused by mild to moderate dysautonomia (the drop in blood pressure gives me orthostatic tachycardia; strictly speaking, this isn't POTS, which has no drop in blood pressure). I've got GI symptoms as well, plus widespread muscle tenderness, pain (and lately, burning sensation) to go with it (mostly in my calves and hips, but even in weird places like my jaw muscles). There seems to be no inflammatory cause, though, since rheumatological and inflammatory neuropathy workup has been strictly negative.

Now, I've never been diagnosed with EDS, although I am tall and thin enough to classify as borderline marfanoid habitus (I'm a couple inches longer in my arm span than my height.)

I'm pretty much at my wits end with what could be causing the POTS, though. As of now I am presuming it to be instigated by chronic pain radiating from the chest to the spine.

The really troublesome thing is my "TOS" doesn't really seem to be TOS at all, because although it continues to cause me great pain in the thoracic outlet area and pec, none of the diagnostic criteria for TOS show up when I do provocative tests like raising my arm. Instead I've been diagnosed by pain management as having intercostal neuralgia of the first rib and possible costochondritis. I can push my finger below my clavicle where it meets my sternum and elicit a lot of pain, which radiates to my pec. Earlier this summer I had a diagnostic nerve block in the intercostal area of the first rib, and it killed the pain locally (my neck and shoulder are still in a lot of pain).

As of now I am hoping a procedure I have scheduled to zap the first rib area will numb the pain long enough to do some kind of physical therapy consistent with what TOS patients do. The procedure is shy of RF ablation of the intercostal nerve, and is instead what's called pulsed RF neuromodulation, which doesn't quite melt the nerve, but is meant to interfere with the pain signals (much like TENS).

I've read in the literature that POTS has been seen in TOS patients. What's frustrating to me is that I am in about as much pain, but because as far as I can tell it's not actually TOS, I either don't need or don't want something like surgery. And yet here I am years later, having reassured myself that surgery wouldn't be indicated, but wound up with autonomic dysfunction / POTS anyway. In a way I regret simply not pursuing pain management earlier, and yet costocondritis isn't supposed to last this long from what I've read.

(I have never been referred to a TOS surgeon for evaluation, but I think about four doctors by now have had me do the provocative TOS measures, with negative results of course. A part of me thinks I should just self-refer anyway and have them at least do a TOS ultrasound to see what's going on.)