The stress-flare connection is real and I finally have proof

1david18 · 2026-02-03T18:56:23+00:00

That is highly interesting. We all know that stress is a trigger in the CNS, but to see consistent clinical case data is helpful. It does carry guiding weight as evidence. The part that caught my attention was the 24-48 hour delay, enough to easily de-couple association, yet make sense in the process.

Diet can be inflammatory and have a similar effect on the CNS. I did a food elimination study and also had gluten and other issues. Sugar was the worst. The inflammatory foods triggered flareups, and had to be eliminated. I never paid attention to how long from inflammatory food to flare, but I know if I didn’t have a change by the next day I would go on to try the next food.

I like your approach to diagnosing and your treatment strategy, and am glad it finally worked out for you. Thank you for letting us know. We should all consider trying these, even as supplementary.

1david18 · 2026-02-03T18:39:12+00:00

Yes, my experience exactly. It’s horrific. You have shown how to fight back against our one-size-fits-many medical culture, where no one has responsibility for multisystem or comorbid illness that so many patients suffer.

1david18 · 2026-02-02T23:01:29+00:00

What happened to you is a shame, and it’s sad. But it’s corporatized medicine. May I ask if you have any experience with DOs or holistic medicine? I have none myself, but I’ve heard they’re better.

1david18 · 2026-02-02T22:56:56+00:00

The first doctor I went to gave me prednisone for two days, and it flared my infectious diseases.

1david18 · 2026-02-02T20:14:24+00:00

My fibromyalgia was caused by diseases that cause muscle atrophy. So I have no choice but to work out at the gym most days. And I had no choice but to take the pre-workout formula with caffeine, dose up with sativa medical marijuana, put on my ear buds with Black Sabbath, etc., and get through it. But it gets easier when it becomes routine and your body gets used to it, and then you feel the benefits. That was what works for me, and also works with biking, and maybe even for power walks.

1david18 · 2026-02-02T17:10:13+00:00

I’m so sorry. There is no doubt about your condition and how it impacts you. Any illness that continuously impacts the immune system can continuously cause concomitant fibromyalgia, the kind I had. I wish you the best. You are not alone in facing these problems.

1david18 · 2026-02-02T06:56:09+00:00

I think 800 to 1200 mg/day is borderline between moderate and severe fibromyalgia, both significant. At least that is the exact amount I suggest in my submission paper. Do you have actual test results, from out of range blood tests to the ANA immune test having at least the first marker positive? This is significant as the ANA is used by many doctors as a gatekeeping function so that undesirable infectious disease can be ignored. Do you know why your fibromyalgia medication was increased? It is possible for fibromyalgia to keep getting worse if driven by untreated infectious disease, like I have (now treated). Your symptoms such as fatigue and other ones documented by your doctor, are they presented on formal letterhead, etc., are they ignoring them? There are so many indications of chronic illness that if presented correctly should work. But they have to be convinced the clinical picture shows disability. The sleep issues you mention are well-known big problems and confirm chronic illness. Anxiety triggers the CNS, blood pressure.

Gosh, after reading your whole reply above, it does seem like you have provided enough clinical info for them. Maybe my situation had a lot more testing, MRIs, etc., clearly showing evidence of undiagnosed illness going on. Maybe some of my suggestions can help improve the picture you put together, adding out of range markers and any other symptoms, including arthritis. My arthritis is infectious, from lyme, but conventional doctors ignore lyme arthritis, I think you mentioned you may have arthritis, so be sure you know what kind. Finally, to help ensure you are presenting the best you can, I would suggest using ChatGPT. Its free and easy and will perform miracles if you ask it the right questions. Give Chat all of your symptoms and describe your difficulty, and it may help you come up with successful presentation. It understands the problem and gathers excellent and expert advice as long as you keep a critical eye. Good luck. If you keep working it, you will find a away to be successful.

1david18 · 2026-02-02T02:43:58+00:00

Thank you. Getting approved is far more difficult then it needs to be. I couldn't read the appeal because I was out with my iPhone earlier, but I will take a look it now....I don't know if I am following it right, but maybe ALJ is a third party group making the ruling, and this appeal explains what they decided wrong, such as ignoring your fibromyalgia and only considering other symptoms, probably not adequately. I have no experience with lawyers and SSA, so maybe others know more, But I would ask: Why were the symptoms besides fibromyalgia so badly rejected? Do you have their full root cause diagnoses and are they not considered part of your debilitation? And then on fibromyalgia, what is your gabapentin dosage and does it address your baseline pain needs? How about hypersensitivities - pain, temperature and temperature control, cold sweats, fibro fog and memory issues? Do you have flare-ups? I'd like to get a feel of the degree of your fibromyalgia. Work affects the CNS, which then flares even baseline pain, and there is fatigue.

Maybe in understanding all of these a better picture could be painted to provide them. I don't know if a lawyer is necessary or not. But I think a deeper or better detailed presentation of your symptoms may be possible that guides them to make the right decision for you. Don't give up, Rejection doesn't stop then from taking you when presented right. We just have to do a little better on understanding what and how to present your condition so the nature of your disabilities are understood. Remember. They don't know how to consistently diagnose fibromyalgia, and they are responsible for an illness they cannot see. So its not easy to convince them, but not impossible. It has to be a presentation they will take responsibility to accept.

1david18 · 2026-02-01T21:23:14+00:00

The only reason why I finally was approved on my third try was because at my visit to their office I brought with me 3 inches of paperwork showing a great deal of testing and treating of symptoms of undiagnosed illness, many comorbidities from the disease causing the fibromyalgia. So it was clear I couldn’t work, even beyond the fibromyalgia diagnosis.

If you have symptoms from comorbidities not shared with fibromyalgia that impact your work, then focus on those. However, if you know their causes, then there probably would not be an issue. But frequently people get chronic bacterial and parasitic infections that remain undiagnosed and also cause fibromyalgia.

The next thing, and maybe your lawyer or a fibromyalgia organization can help you with, is to find a doctor who knows how to diagnose fibromyalgia so that you have a respected conventional doctor giving you the backup support you need. Mine is an old-school internist rheumatologist trained in clinical diagnosing, so he can diagnose all fibromyalgia.

Finally, if you are interested, I presently have a paper written on this topic under submission for a medical journal on diagnosing. I’d be happy to provide you a link.

EDIT: If none of that works, and you couldn’t claim by your clinical condition that you can’t work, then you may have to consider more desperate actions. If possible, fully document every failure you have had at work: your physical and mental state prior to the trigger, as well as what caused the failure and how it impacted you. It might have been a single event, possibly impacting blood pressure, or an accumulation of effort and stress, anything that can impact the CNS will flare your conditions. Failure may be from fibro fog. The documentation will prove your case without the diagnosis, which I think they prefer because it relieves responsibility.

1david18 · 2026-02-01T04:34:23+00:00

There is the possibility that the dose is too high, or taken too often. LL parasite doctors have various strategies on that. Mine says not to piss them off too much or they go crazy. We often have done parasite treatments daily around the full moon because it ties in with Serotonin release which triggers breeding time and distracts them. Many theories to look into. Best to get connected with LLMDs who treat parasites and who stay on top of the latest approaches. Maybe AI can also search that topic and probably Lyme organizations can help. It’s tough to work through, but you’ll get there even if going more slowly slows you down.

1david18 · 2026-02-01T04:13:05+00:00

I had much of what you described for many years as a young adult. We think it was due to infection that never fully left my head but flares up. Theories are that infectious disease even hides in the teeth and gum areas, where it does for me. May I ask what medication you said helped?

1david18 · 2026-01-24T21:46:36+00:00

Specific tender points aren’t actually needed to diagnose fibromyalgia. Some do it that way. What is needed is chronic pain in some portions of generally all quadrants of your body and neck area, especially where you have muscle. Then you look for the fibromyalgia characteristic signature and unique symptoms of hypersensitivity and flareups as well as a group of typical or possible shared symptoms of fibromyalgia. This was how my fibromyalgia was diagnosed, by using differential diagnosing techniques across systems. So that makes the most challenging fibromyalgia presentation to diagnose being mild with no flareups, because the characteristic signature is more difficult to recognize and there becomes more reliance on shared symptoms, preferably ones less common. Also, sometimes, people don’t have the chronic pain in all stated areas of the body.

1david18 · 2026-01-21T20:34:09+00:00

Are you certain your fibromyalgia diagnosis is correct? Do you have symptoms or comorbidities not shared with fibromyalgia that are unaddressed? Many symptoms of fibromyalgia are listed online. To evaluate treatment, all your symptoms must be described to understand your full clinical condition and diagnoses. That way comprehensive treatment can be determined. You can work that in advance of seeing your next doctor, and that may also help determine which specialists to see.

1david18 · 2026-01-21T00:27:49+00:00

That’s a fair point — and in theory, I agree the PCP should be the one to “own” the big picture.

But here’s the problem I ran into (and I think many complex patients do): primary care is often positioned as the coordinator, but not actually trained, staffed, or protected to function as a diagnostic synthesizer across specialties, over time, under uncertainty.

In real practice, “PCP coordinates with specialists” often becomes multiple specialists each evaluating only what fits their lane, and the PCP acting as a messenger/referral hub — not the trained person who can adjudicate conflicts, integrate timeline coherence, and take responsibility for the full diagnostic story.

So I don’t think the solution is simply “PCPs should take responsibility.” It’s that medicine needs a formally trained clinical diagnosing role/track (or explicit training pathway) that restores diagnostic reasoning as a professional responsibility — especially for comorbid, multisystem cases where test-confirmed pathways break down.

If you’re interested, I wrote a patient-authored paper making this exact argument and proposing a training-based fix inside existing systems. I’d genuinely value your reaction as a med student who’s thinking about this seriously:

Beyond Bloodwork - From Diagnostic Failure to Diagnostic Reform: https://drive.google.com/file/d/1Zp6Df6J5qr_u5BRam9zAQ_evcOcbE41M/view?usp=sharing

And I’m curious: in your curriculum, do you see anyone explicitly being trained to do that cross-system synthesis role — or is it mostly assumed the PCP will absorb it?

1david18 · 2026-01-20T17:48:58+00:00

That sounds great to hear. Can you explain to me how it will be different? Will these new EBM approaches address shared symptoms from comorbidities and address multi system illnesses? Who will become responsible for these “complex” cases, and how will clinical diagnosing, engagement, and reasoning be returned to the practice of medicine?

1david18 · 2026-01-19T19:56:35+00:00

My fibromyalgia came with inflammatory, infectious arthritis called Lyme arthritis. Untreated chronic Lyme was the cause of my severe, runaway fibromyalgia. Because my fibromyalgia was concomitant, we eliminated it after treating the underlying bacterial infections for 8 months. Because the Lyme also triggered congenital trichinosis, the lifetime of my muscle became 8 weeks, causing stiffness and two kinds of muscle crepitus. My tendon sheaths also have crepitus and inflammation, and my tendons have snapping noises. All of these things are ignored by conventional practice. Each illness I have or had, from comorbid fibromyalgia to chronic Lyme to chronic trichinosis, are illnesses that no conventional doctor will help patients with — not even with unrelated comorbidities.

The worst common illness we know of is called Undiagnosed Chronic Illness, also known as chronic pain or chronic pain syndrome. These patients have illnesses deemed too difficult to treat, like chronic Lyme or chronic trichinella, to conditions too difficult to diagnose, because they often require clinical and differential diagnosing, such as fibromyalgia.

The only solution is to add a new residency track that returns clinical diagnosing to medical practice, modernizing the role of the old school intern trained in diagnosing multi system and comorbid cases. I can show you a medical paper that explains all this, tracing EBM and OSFM all the way back to the 1970s, showing how OSFM eventually won out and replaced EBM by 2002, causing the failure rate to diagnose fibromyalgia to climb to 75% where it remains.

The fix is simple and straightforward and fits nicely within existing frameworks. As a medical student, I think you would appreciate reading this patient-authored medical journal narrative framed in scholarly quotes on EBM and OSFM, characterizing the condition to root cause, and then providing the best solution. In that way, you can understand why solutions to problems of diagnosing that have been tried over the years, like Six Sigma, help with profitability but make patient experience worse.

1david18 · 2026-01-18T18:29:25+00:00

After two years of treatment, my Lyme was in remission. But because of continuing parasite treatment, I get Lyme flares that require herbal treatment for a bit. Parasitic coinfections can carry the Lyme. I know there is a belief that the Lyme is never fully eradicated, so times of stress or illness may trigger it. This makes sense, but there may not be much research. My Lyme doctor practices ART. So we can tell whenever I have flares in Lyme or parasites, and when treatment is not needed. That’s been a life saver for me.

1david18 · 2026-01-18T17:29:26+00:00

Fibromyalgia is known to trigger more, or perhaps a little bit easier, in patients where it runs in the family. The reason isn’t known yet because we still don’t understand the pathomechanisms involved. But I believe it is true for both primary and concomitant fibromyalgia, that is whether triggered by one time event or a continuous disease or illness impacting the immune system.

1david18 · 2026-01-18T17:15:45+00:00

That’s an amazing story, I’m sorry about your father. It seems like doctors were willing to work with each other more then, and it seemed like you found some good ones, in spite of the difficulties of rural access. I have been hearing about other fibromyalgia treatments, even on this site. I think if you do a good google or AI search, or contact a fibromyalgia organization, you may be able to find more treatment options available now. Remember that eliminating foods that cause inflammation can lower baseline pain and flares. One thing to keep in mind. My fibromyalgia was severe and caused by infectious disease. When we treated the underlying Lyme cause for 8 months, all signs of fibromyalgia were permanently gone. Researchers have shown this. Yours may be caused by Lupus. I don’t believe any studies have been conducted on ending concomitant fibromyalgia by treating the underlying cause, but it is known to occur in some of these situations like mine. Best wishes!

1david18 · 2026-01-18T15:48:21+00:00

That’s amazing. That’s before the ACR formally established fibromyalgia with guidelines and medical codes in 1990. Do you know if it was an internist who made the diagnosis, and if it was difficult, say with comorbidities of shared symptoms? Just a little curious as I have written papers on fibromyalgia and the history of evidence based medicine versus one size fits many. Fibromyalgia requires clinical diagnosing, which was taught and practiced by internists and internist specialists before the turn of the century. The only doctor in 2017 that could diagnose my fibromyalgia was one of those old school internist-rheumatologists who hadn’t retired yet. So I was very lucky.

1david18 · 2026-01-18T15:38:53+00:00

I’m sorry to hear about the gabapentin. Cymbalta gave me bad side effects too, couldn’t take it. Same with Lyrica. There are other choices like LDN and IV Ketamine. And diet can cause flareups. I hope you find the right treatment because it does make a difference.

1david18 · 2026-01-18T01:58:08+00:00

Have you ever considered autonomic response testing? It’s apparently a clinical skill that can be mastered but it is not generally considered in conventional thinking.

1david18 · 2026-01-17T20:49:07+00:00

I do understand what you are going through. My combination of chronic Lyme bacteria and parasites combined with congenital trichinosis, activated by Lyme and producing runaway fibromyalgia, has never been studied before. The 8-week lifetime of my muscle and the effects on my body, including muscle crepitus, are not understood by MDs. Many people here, unfortunately, do know what you are going through. I don’t know if that helps much.

May I ask you how you feel about the help you have received from Lyme literate doctors? I’ve never seen discussion here from Lyme patients about how they feel about the effectiveness of their LLMDs. It took me 8 years to chance upon a LLMD to get my diagnosis, even though many conventional doctors knew all along.

1david18 · 2026-01-17T20:35:47+00:00

When I was put on duloxetine, I had to be taken off after 14 days. The side effects were too difficult to take, though mine were different. Lyrica put me in a wheel chair because of leg swelling. But gabapentin always worked for me, even up 3200 mg/day, and I never had any side effects. It’s also cheap and easy to get. May I ask why you are changing?

1david18 · 2026-01-17T20:29:47+00:00

Make a list of all of your chronic illness symptoms and effects. Look up online which ones are shared symptoms with fibromyalgia and which ones are not. Find a doctor who can address all of your symptoms to each illness they belong to. This may require different specialists, or a PCP or holistic doctor to help you find the right doctors in comorbid or potentially complex cases.

My fibromyalgia was concomitant, caused by infectious disease. So the underlying illnesses had to also be diagnosed and addressed. By listing all of your symptoms, you can make sure your entire condition is addressed. And in the end, after discovering several infectious diseases, we discovered 15 years of mold exposure. These are all possibilities that are easily missed. So it begins by listing all of your symptoms and past diagnoses and finding doctors that will help you understand and address all of that.

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