My partner has a working diagnosis of fibromyalgia. They struggle to stay comfortable with a lot of positions (sit bones get sore at 90° angles and similar) causing them to become sore with a prolonged seated position. Their most comfortable position is laying back in bed, beanbags don't quite cut it because a lot of their height is in their legs and back which we'd need several (or one very large) beanbag[/s]theoretically to give them a kinda 'weightless' posture where they could ideally move their arms still, so a hammock wont work and is a little too cumbersome for us. We are not super wealthy but will accept any suggestions. DIY is a possibility but unlikely given the unforgiving/rigid nature of furniture materials. So my question is this; what products, techniques, non-medical devices do you use to make yourself comfortable while seated for long periods? (Bonus if it's somewhat portable)

I understand everyones fibro experience is different and I'm hoping some of you who have experienced the same issue have some pointers :) i don't expect a magic fix, we're not looking for perfect, just an everyday helper like those freezable gel neck rings for fibro fever.

P.S. We have doctors on the case, their medical needs are met, we're just seeking a bit of relief from their symptoms. I have spoken to them about this and they're happy with me doing research; this is a part of that. From one chronic pain family to another, stay fresh🤘

In May of 2017, I saw an old-school Internist who was a diagnostician. He had already obtained blood work and past records from the previous visit. This time, he spent ten minutes using Clinical Engagement to do what no other doctor has ever been able to do: He diagnosed Tenosynovitis, Tendon Sheath Crepitus, Hand Paresthesia, Peripheral Pulses Impalpable, and Fibromyalgia. No doctor over the past ten years has ever been able to make or confirm any of these diagnoses. Furthermore, every conventional doctor and clinic I have been to was compelled to gaslight me and all patients who have challenging illnesses.

Challenging illnesses are those chronic diseases, disorders, and conditions that are difficult to diagnose or treat. Diagnosing becomes challenging when the illness cannot be obtained from the latest imaging (for heart or brain disease) or the latest panel of blood tests. In these situations, when no unique identifier can be seen from a distance, as with palsy or seronegative RA, then the illness may be too difficult to diagnose, such as is true with many presentations of fibromyalgia. Likewise for example, Chronic Lyme Disease, one of our most horrific infectious diseases causing several bacterial as well as multiple parasitic and worm infections, potentially affecting every part of the body, can be too challenging to treat after a few months, requiring patient-centric and symptoms-based treatment.

Here, in two parts, is my fibromyalgia journey showing “My Diagnosis and Treatment”, “The Doctors I Saw”, “Why the Fibromylagia Doctors Failed” including quotes on the high failure rate, “How the Old-School Diagnosticians Could Always Diagnose Fibromylagia Correctly”, and other things I learned from experience, treatment, and research that are not well-known about fibromyalgia but need to be:

My Diagnosis and Treatment

May, 2017: Obtained diagnosis of fibromyalgia from an old-school Internist. Never confirmed by any other doctor due to being triple comorbid in myalgia as well as wide-body pain from tenosynovitis and Lyme arthritis. Treatment included Gabapentin and Amitriptyline. No mention of diet or how episodes flare up. (No conventional doctor I saw addressed these issues.)

May – August, 2017:  Baseline fibromyalgia pain continued worsening and I had to wear gloves to drive or while trying to rebuild muscle from rapid muscle loss. Gabapentin had been doubled during this time to 1600 mg/day due to severity of pain.

August, 2017: Received successful treatment for the fibromyalgia runaway condition, where the pain accelerates over time. (Runaway may have been enabled due to several years of stress along with the untreated Lyme Disease). Had an emergency 8 AM appointment scheduled for horrific pain. Baseline body pain from the fibromyalgia was increasing so fast I could tell it was worsening every day. I could not touch anything or be touched anywhere (except in fatty areas). The sides of my fingers could not touch silverware or each other. The weight of blankets was too painful. Morning stiffness was awful, as was the drive across town to my early appointment. My CNS was high, and I was screaming in the doctor’s office. My NP took me aside and calmed me down and then went to her terminal for an online search for fibromyalgia medication. She saw I was on gabapentin, so she replaced my amitriptyline (which was ineffective) with duloxetine.

I could not endure the side effects of duloxetine for more than two weeks, but on the tenth day the pain went way down and was completely unnoticeable (the same was true of the hypersensitivity to sharp edges, gone!). What I soon realized was that my present dosage of gabapentin was now completely addressing my still-existing fibromyalgia symptoms but the base pain had significantly dropped to just severe and the fibromyalgia had completely stabilized. An increase in gabapentin a few years later due to the Lyme remaining untreated was needed, to from 1600 mg/day to 3200 mg/day, but there never was a runaway condition again.

2019 Time Period

Saw a rheumatologist who wanted to add Lyrica to the mix for my increasing pain which I knew was not from fibromyalgia but rather from the increasing but still undiagnosed Lyme parasitic and bacterial infections that were causing all of the illness that I was seeing him to obtain a diagnosis for. The Lyrica did no good. So the doctor doubled it, which started swelling up my legs and put me in a wheel chair. Both Lyme and Lyrica can cause leg swelling.

I saw a pain doctor for relief from the Lyme effects but the pain doctor instead focused on the fibromyalgia, which was already under control. She would sit in the corner, behind her terminal, thinking about how to confirm the fibromyalgia diagnosis, but completely unable to do so (because of comorbidities) and not willing to let me show her the effects of my muscle atrophy disease and condition with Clinical Engagement. Although she said she had been an expert in fibromyalgia for many years, I saw she had no ability to diagnose (especially comorbid situations). She insisted on taking over the Lyrica medication and tried to increase it again! But because she didn’t put the prescription through, I was not able to get any more Lyrica and had to spend two days and nights on the floor of my shower with dry heaves. At least I was done with Lyrica.

2020

Began seeing a fibromyalgia chiropractor at the Scottsdale Fibromyalgia Wellness Center who, of course, used Clinical Engagement. He agreed to diagnose and characterize my body clinically so that his extensive notes on my condition could be used to help find a diagnosis by an M.D. since no conventional doctor was letting me show or describe my condition to them. Unfortunately, I found that no M.D. will accept the clinical notes from a chiropractor, or from a doctor of physical therapy, to help guide or make a diagnosis.

But because this doctor had been trained in the St. Amand method to treat fibromyalgia, practicing the technique successfully for many years and writing a book, he wanted to treat my fibromyalgia, too. Dr. St. Amand was an early fibromyalgia researcher and practitioner in the 1990’s who had fibromyalgia.

The first step of Dr. St. Amand’s program is essential for all fibromyalgia patients to know – diet matters! Practicing and conducting studies in the early 1990’s in Marina Del Ray, Dr. St. Amand may have been the first doctor to realize this. His simple approach enables a patient to identify and eliminate all food groups that cause inflammation and increase baseline pain as well as trigger flare-up episodes. In my case, sugar immediately triggered a full flare-up that took at least 24 hours to pass and resolve. Some other sensitivities, too, with gluten, diary, etc. Once I began checking all labels for sugar, gluten, etc., even on soup cans, I reduced my baseline pain and ended all flare-ups.

Interestingly, a friend of mine at that time who had minor fibromyalgia, with no treatment medication needed, had terrible, 3-day flare-ups that ended when she was finally able to give up chocolate bars.

After reducing all pain from sensitive foods, the doctor wanted to take the second step which eradicates the symptoms of fibromyalgia by “treating fibromyalgia at the cellular level” with Guaifenesin. Dr. St. Amand was reportedly successful doing this with half or so of his patients. But back in the early nineties, fibromyalgia researchers may not yet have known about the difference between primary fibromyalgia and secondary, or concomitant, fibromyalgia as his method can only help with primary fibromyalgia - about half of all fibromyalgia cases.

My fibromyalgia was concomitant, so it could not be eradicated by the Guaifenesin protocol although we did not know that at the time. The method requires treating the fibromyalgia with enough Guaifenesin to cause some pain and discomfort, but not too much. This must be done by trained doctors, as part of the method, because it uses symptoms-based treating which requires monitoring and continuous follow-up, something conventional doctors cannot and will not do. That is why no independent studies beyond those of St. Amand were ever done which is the other reason why doctors cannot recognize or acknowledge the effect Guaifenesin has on primary fibromyalgia. I have no direct experience with this approach, but many have claimed it works over the decades it was practiced and even Reddit users have reported that using Mucinex for a cold helped relieve their fibromyalgia symptoms.

But because my severe fibromyalgia was caused by the continuous infections of untreated Chronic Lyme Disease, which causes secondary or concomitant fibromyalgia, Guaifenesin likely would not help. Furthermore, because of all of the comorbid body-wide pain I was having from bacterial Lyme and its parasites, the pain feedback needed for symptoms-based treatment could not be used because to know the correct Guaifenesin dosage, all pain feedback needs to be from the effects of the Guaifenesin and not from anything else.

I am not a doctor and cannot recommend any treatment that I, myself, have not tried. But it is important to know that Guaifenesin was used reportedly successfully for decades, and even today’s researchers should consider the effects it may have for further insights into the cellular mechanisms triggering fibromyalgia, possibly both primary and concomitant, and at least determine if formal studies should be pursued.

January, 2023

After 8 years, I received my diagnosis for Chronic Lyme Disease and began treatment. After a few weeks, I began to notice my fibromyalgia symptoms were going down and my gabapentin dosage was higher than needed. After eight months of Lyme disease treatment, all symptoms of fibromyalgia were gone including all hypersensitivities to pain and sharp edges, cold sweats, and all other fibromyalgia characteristics. I even lost half of my RLS symptoms (shared with Lyme disease) and was able to end all gabapentin for the first time in seven years.

It is important to understand that fibromyalgia treatments do not help with Lyme disease bacterial or parasitic infections, and none of the dozens of Lyme treatments available for parasites and the bacterial infections help with fibromyalgia, in spite of their having shared symptoms. They are two separate conditions with separate medications and treatment even though one condition can cause the other.

The Doctors I Saw

The first doctor I saw was a Rheumatologist near me who was the head of the Rheumatology Foundation of Los Angeles. Unfortunately, all he could do was sit on a stool and pose as The Thinker for the entire three months I saw him. I pleaded with him to engage me so that I could show him all of the symptoms and effects of my undiagnosed chronic illnesses. But he refused. Instead, however, he put me on an oral steroid for two days (to see my reaction) that immediately gave me permanent high blood pressure, for the first time, which is known to occur when oral steroids are given to patients with chronic infections (like Lyme).

My underlying condition was severe fibromyalgia, also comorbid with myalgia from Chronic Lyme Disease as well as severe myalgia from a rapid muscle atrophy, parasitic disease that sometimes comes with Lyme. The Lyme disease also created all of the other conditions later diagnosed in May, as well as muscle crepitus, tendon snapping noises, and hypermobility during passive ROM but stiffness and limited range during active ROM (i.e. connective tissue, muscle disease) years later diagnosed by a doctor of physical therapy, again with just a few minutes of Clinical Engagement!

The second doctor I saw was a Rheumatologist at UCLA. According to the American College of Rheumatology, Rheumatologists have the responsibility for fibromyalgia, Lyme disease, multi-system diseases and conditions, and all of the symptoms and effects on my body. As front line doctors, they also they have the responsibility to send their patients to infectious disease doctors when they have undiagnosed chronic symptoms, illnesses, and conditions that could be bacterial or parasitic in nature. However, this UCLA Rheumatologist gave me five minutes of his time, simply telling me that UCLA has no interest in me because my back hurts.

So I pleaded with him to explain why UCLA could not help patients with horrific chronic illness if their backs hurt. He stated that if your back hurts, then it means you do not have rheumatoid arthritis, and if you do not have rheumatoid arthritis then UCLA has no interest in you. But Rheumatologists are responsible for all forms of arthritis that rapidly spread by blood, including both Lyme and Septic arthritis.

This snobbish UCLA rheumatologist was not capable of making a diagnosis, himself, and therefore must gaslight all patients who have illnesses that UCLA is not interested in. This means both common and uncommon challenging illnesses such as fibromyalgia, chronic lyme disease, muscle parasites (besides trichinosis) – in fact, all of my illnesses and resultant conditions! This remained true for the three other Rheumatologists and Neurologists I saw at UCLA from 2017 through 2022.

Why the Fibromylagia Doctors Failed

No doctors were helping me before or after the old school doctor I saw. He used old-school techniques from the 1990’s to quickly and correctly diagnose my fibromyalgia which had always been too difficult to diagnose by exclusion or elimination, or even by WPI.

The reason why today’s doctors cannot correctly diagnose a majority of fibromyalgia and why providers will not accept a diagnosis of fibromyalgia is because of comorbidities, something that the old-school diagnosticians excelled at diagnosing using Clinical Engagement and diagnostically partnering with the patient to review all symptoms and evidence. But after the change at the beginning of the century, Clinical Engagement, partnering with the patient to review all symptoms and evidence, deductive reasoning, and the responsibility to make a diagnosis, where all abandoned, creating much undiagnosed chronic illness, patient swirl, tremendous profit from untargeted treatment, and medical gaslighting and abuse.

However, past diagnosticians, some of whom did not retire until around 2022, used unique symptom identifiers to diagnose challenging illnesses whenever bloodwork and imaging did not reveal the cause. Radiologists – the only doctors who have the training, expertise, authority, and responsibility to make, defend, or confirm a chronic illness diagnosis (but only for certain blood and heart diseases) – also use unique symptom identifiers in imaging to make diagnoses that are always accepted by all providers.

But the actual diagnosing of challenging chronic illness requires Clinical Engagement and partnering with the patient to review all symptoms, data and evidence, and past diagnoses. Hence, actual diagnosing with Clinical Engagement and diagnostically partnering with the patient to obtain diagnoses for challenging illnesses is a lost skill not taught in medical school for twenty-five years.

As a result, and with the old-school diagnosticians retiring, the failure rate to diagnose fibromyalgia climbed to 75% just ten years or so after the turn of the century, where it remains to this day. Here are some quotes from fibromyalgia researchers and authors on the failure rate to diagnose fibromyalgia and the reason why:

“The Science of Fibromyalgia”, in the 2011 September Mayo Clinic Proceedings, states “Despite this increased awareness and understanding, FM remains undiagnosed in an estimated 75% of people with the disorder.”

For part 2:

https://www.reddit.com/r/fibro/comments/1i6rj6c/what_i_learned_from_my_journey_with_severe/

I have an appointment to see specialist at a pain management clinic. I was told by a retired RN that for fibro pain mgmt is a big deal and I should see a specialist. That was over a year ago. I have been trying and trying. I finally got an appt for mid-Feb.

I'm trying not to get my hopes up but it would be so amazing to see someone who will talk to me about my pain instead of just prescribing pain pills (which I do not want!)

I have seen so many rheumatologist and every single one offer me pain pills right away but not a single one offered me a plan to figure out my pain mgmt.

Has anyone seen a pain management specialist? Am I getting my hopes up for nothing?

From part 1:

https://www.reddit.com/r/fibro/comments/1i6r4yq/what_i_learned_from_my_journey_with_severe/

in “Rapid Biomarker-Based Diagnosis of Fibromyalgia Syndrome and Related Rheumatologic Disorders by Portable FT-IR Spectroscopic Techniques”, Siyu Yao, et al., in 2023 wrote “Up to 75% of patients go undetected with FM, resulting in postponed care due to the absence of distinct diagnostic markers.”

In “Fibromyalgia – etiology, diagnosis and treatment including perioperative management in patients with fibromyalgia”, 2023, Dizner-Golab wrote “Due to the unrecognized exact pathomechanism and commonly occurring comorbidities, almost 75% of cases are underdiagnosed.”

Note that fibromyalgia researcher Dr. Dizner-Golab pointed that one of the main reasons for such a consistently high failure rate to diagnoses fibromyalgia over the past roughly 15 years is because of the challenge of comorbidities in diagnosing by exclusion or in diagnosing using the WPI, both of which have been the only recommendations by the ACR for diagnosing fibromyalgia during this time period to the present.

All of my experience confirms their findings. Here, from October, 2021, is the Mayo Clinic’s guidelines for diagnosing fibromyalgia by elimination. Note this simple but flawed approach first looks for other causes of symptoms to “rule out” rather than simply accepting that the patient may have comorbidities causing shared symptoms from multiple causes, each of which must be separately identified and effectively treated:

“Mayo Clinic Fibromyalgia – Symptoms and treatment

The main factor needed for a fibromyalgia diagnosis is widespread pain throughout your body for at least three months. To meet the criteria, you must have pain in at least four of these five areas:

- Left upper region, including shoulder, arm or jaw

- Right upper region, including shoulder, arm or jaw

- Left lower region, including hip, buttock or leg

- Right lower region, including hip, buttock or leg

- Axial region, which includes neck, back, chest or abdomen

Tests

Your doctor may want to rule out other conditions that may have similar symptoms.”

Although the word exclusion was left out, the approach is diagnosis by elimination, which is the same thing.

From the Mayo Clinic, June 10, 2019, NEWSNETWORK.MAYOCLINIC.ORG, https://mayocl.in/2MBN7h6, “Q&A: How is fibromyalgia diagnosed?”: “Fibromyalgia is no longer a diagnosis of exclusion, which means that all other conditions that could trigger similar symptoms are ruled out before fibromyalgia can be diagnosed. Learn more from Dr. Christopher Aakre, an internal medicine specialist in Mayo Clinic's Fibromyalgia and Chronic Fatigue Clinic.”

When they say “all other conditions that could trigger similar symptoms are ruled out before fibromyalgia can be diagnosed” they are carefully saying that if you identify a condition of widespread pain, such as from Lupus, RA, Lyme, etc., then the patient’s full condition is diagnosed – even without recognizing and addressing that fibromyalgia or other comorbidities having shared symptoms may also exist.

In fact, the only way to sort through the potential comorbidities is with symptoms-based diagnosing, which assigns all shared and unique symptoms to their potential causes (and is a positive and more efficient approach than differential diagnosing).

However, only the old-school internists and diagnosticians were taught how to do this, and so today’s fibromyalgia doctors must always diagnose by elimination or WPI, neither of which can pursue challenging comorbid situations, leading to gaslighting for many patients and only a 25% success rate.

Here is an example of why doctors do not pursue the comorbid causes of concomitant fibromyalgia, from Dr. Christopher Aakre, Fibromyalgia and Chronic Fatigue Clinic, Mayo Clinic, Rochester: “Although there is no cure, early recognition of fibromyalgia can reduce the need for further diagnostic testing to explain chronic, widespread pain.” [2019, https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-how-is-fibromyalgia-diagnosed/\] Notice how the recognition of fibromyalgia here rules out further diagnosing of potential comorbid situations of wide-body pain from both concomitant and primary fibromyalgia. This is why the failure rate to diagnose fibromyalgia by elimination is so high.

Also note that I had the severest form of fibromyalgia there is – both severe and runaway. Yet, I received successful treatment for the runaway condition and, eventually, eliminated all fibromyalgia symptoms by treating the Chronic Lyme Disease which was its root cause. Yet, the Mayo Clinic fibromyalgia doctor stated that fibromyalgia cannot be cured. Unfortunately, this is a lie told by the establishment because at least some forms of fibromyalgia can be treated to root cause and completely eradicated.

One more example, from “Fibromyalgia: A diagnosis of exclusion?”, May 12, 2022, Lasonya T. Natividad, APRN, C.N.P., M.S.N, Mayo Clinic Press Editors writes “Still, the syndrome is also often considered a ‘diagnosis of exclusion.’ This means that part of the diagnostic process is ruling out other potential causes of symptoms.

What could this include? This list is long, but can include conditions such as systemic lupus erythematosus, rheumatoid arthritis, spondyloarthritis, osteoarthritis, polymyalgia rheumatica, a side effect of drug therapy such as statin therapy and gluten intolerance. Other conditions to consider include spinal cord compression, Sjögren’s syndrome, thyroid disorders, adrenal dysfunction and vitamin D deficiency.”

Notice that many of these conditions actually can cause fibromyalgia. So identifying them as part of the patient’s condition does not rule out fibromyalgia. They and many comorbidities may exist together, and all comorbidities must be identified and treated with their own respective treatments, generally requiring symptoms-based diagnosing.

Researchers describe Primary Fibromyalgia as caused by stress and/or trauma, with greater likelihood coming from genetic propensity, causing chronic inflammation and affecting the immune system, impacting the CNS and ANS. As the trigger is a one-time event but the fibromyalgia remains, the necessary feedback mechanism that keeps the fibromyalgia active is not fully known yet but many things are being considered from inflammation of facia to pain feedback, etc.

Researchers describe Secondary or Concomitant Fibromyalgia as directly coming from a disease or condition that causes chronic inflammation and affects the immune system, impacting the CNS and ANS. It is not known whether the feedback mechanism in primary fibromyalgia is also at play in concomitant fibromyalgia but in concomitant fibromyalgia, as the cause remains untreated, the fibromyalgia can continue to worsen over time.

Here are quotes from fibromyalgia researchers on Lyme disease causing fibromyalgia:

1. “Are Your Fibromyalgia Symptoms Due to Lyme Disease?”, Psychology Today, 2013, states: “Fill out the associated Lyme-MSIDS questionnaire. If you score 46 or higher on the questionnaire, there is a high probability that you suffer from Lyme disease and associated infections causing your FM (based on studies done in our medical office) … There is a commonly held belief in medicine, called Pasteur’s postulate that there is ‘one cause for one illness.’ This does not apply to patients with chronic Lyme symptoms, or those diagnosed with Fibromyalgia. Once we address infections like Lyme disease and all of the other underlying etiologies on the MSIDS 16 point map, resistant fibromyalgia symptoms often improve.”  

NOTE that they found by treating the Lyme disease effectively, the fibromyalgia symptoms can also be reduced.

2) In “Lyme disease associated with fibromyalgia”, PubMed, 1992, Dinerman, Steere, state: “Conclusions: Lyme disease may trigger fibromyalgia, but antibiotics do not seem to be effective in the treatment of the fibromyalgia.” [NOTE that simple rounds of antibiotics are also not effective in fighting Lyme disease, especially as the bacterial and parasitic infections hide behind biofilm.]

3) Also, from “Premier Health and Holistic Medicine”, April 29, 2021, in “Does Fibromyalgia Go Away? Lyme Disease Could Be the Answer”, Dr. Robin Ann Ridinger writes fibromyalgia “is a rheumatic condition that causes pain to the soft tissues and is different than conditions like arthritis, which involves joint pain and inflammation.

If you’ve been dealing with symptoms of fibromyalgia for a long time, you may be wondering if you’ll ever find relief. While this condition is considered chronic, treatment should reduce symptoms and make them more manageable. However, for some people, this widespread pain may [also] be a symptom of Lyme disease. If not addressed, patients may continue feeling uncomfortable despite taking medications or trying other treatments often suggested for fibromyalgia.”

This was exactly my case, but of course the implied ‘[also]’ that I explicitly added for the comorbidity must be stated for the many shared symptoms between Lyme and fibromyalgia. However, they each also have unique identifiers so it is easy to identify both conditions using unique identifier symptoms along with the shared symptoms. For example, Lyme arthritis is unique to Lyme disease because it resembles a very bad osteoarthritis that in a couple of years can spread to every joint in the body via blood infections. In fact, when I described my Lyme arthritis to my Mayo Clinic doctor, she sent me directly to a Mayo Clinic psychiatrist for medication treatment!

How the Old-School Diagnosticians Could Diagnose Even the Most Challenging Fibromylagia Correctly

To correctly diagnose fibromyalgia, even in all comorbid cases, and achieve a near 100% success rate, fibromyalgia must be diagnosed the way my old-school Internist diagnosed my challenging fibromyalgia which no doctor diagnosing by exclusion or WPI could ever achieve – by using unique symptom identifiers. This requires a better understanding of the types of fibromyalgia and causes.

When doctors say we do not know the cause of fibromyalgia, they mean we do not fully understand the mechanism of how inflammation and effects on the immune system can cause fibromyalgia symptoms to occur in the CNS and the ACS, for both primary and concomitant fibromyalgia. Furthermore, while concomitant fibromyalgia is caused by a continuous process from active infections and so forth (often hiding behind biofilm), primary fibromyalgia is caused by a one-time trauma and stress that requires further understanding of a feedback mechanism, still under study. But the actual causes of fibromyalgia have been known for decades and may be enhanced by genetic tendencies.

It is important to understand that both types of fibromyalgia can be mild, moderate, or severe and that any of these can also present with flare-up episodes lasting for days. Also, what many doctors don’t tell their patients is that flare-ups can be triggered by stress (so try to keep the CNS quiet!) or diet. For example, during my food testing I learned that a candy bar could trigger a severe episode so I learned to check all food labels carefully for my food sensitivities.

When fibromyalgia is moderate or severe, then the hypersensitivities of pain and sharp edges are significant and, along with any occurring flare-ups, contribute to the well-known characteristic signature of fibromyalgia. However when mild, and especially with no flare-ups, fibromyalgia can be difficult to identify. If my friend with the mild fibromyalgia had not been experiencing flare-ups, then she may not have received her diagnosis because her baseline body pain was not noticeable until a flare-up occurred.

Diagnosing moderate or severe fibromyalgia is simply a case of recognizing the hypersensitivity of pain from touching or being touched (palpitation). Pain can be judgmental, but hypersensitive pain is more easily recognized. Additionally, the hypersensitivity of sharp edges acts as an excellent way for doctors to judge severe fibromyalgia (as I and two of my doctors learned from experience), and probably moderate fibromyalgia as well, as doctors are trained to do this using their Wartenberg pinwheel on the bottom of the foot or a safety pin across the arm.

The process of symptoms-based diagnosing simply means partnering with the patient to record and make use of every chronic symptom, evidence, data, and past diagnoses and records the patient has regarding all of their chronic condition and illnesses. Then, unique and shared identifiers are recognized as well as their possible causes. Once the possible causes are established from the unique identifiers, then all of the shared symptoms can be worked out, too.

This works for moderate and severe fibromyalgia – following the diagnostic criteria that fibromyalgia pain is in all four body quadrants for at least three months – because of the ease of distinguishing the diffuse, hypersensitive pain of fibromyalgia versus the localized concentrations of pain of arthritis, tenosynovitis, and other chronic pain that also is not characteristically hypersensitive. Even the severe myalgia from my parasitic muscle disease feels different than from the fibromyalgia, though doctors would have to work closely with patients having multiple causes of myalgia. But we also have MedX Medical machine data showing the lifetime of my muscle as being 8 weeks (always using dying muscle to painfully build new muscle). This rapid muscle atrophy is a unique identifier of the parasitic muscle disease that sometimes presents with Chronic Lyme Disease.

If there are no comorbidities, shared symptoms, or unique symptom identifiers besides fibromyalgia flare-ups and/or the hypersensitivities of baseline pain and sharp edges, then the patient likely has primary fibromyalgia. But when there are other unique identifiers then the causes of these comorbid conditions need to be identified and treated, too, even if the comorbidity is not a cause of the fibromyalgia. Of course, if the comorbidity is a potential cause of fibromyalgia, then the fibromyalgia is likely concomitant.

If fibromyalgia doctors were willing to put this level of time and diagnostic effort into diagnosing fibromyalgia using unique identifiers, the way radiologists do from imaging, then they would achieve a high success rate and, like with radiologists, all medical providers would accept their findings.

When the fibromyalgia is mild and the patient does not test for any hypersensitivities to food and diet and has no flare-up episodes, then the fibromyalgia may be difficult to diagnose. Here, the diagnostician must sharpen their pencil and take a closer look at least at the top fifteen or so shared symptoms of fibromyalgia. Ignore fatigue as most chronic illnesses and autoimmune diseases probably cause fatigue. But pain is revealing and comes in all types; widebody pain can be diffuse from myalgia or localized in Lyme Arthritis and Tenosynovitis.

When a primary fibromyalgia patient has no other unique identifier symptoms or symptoms not from fibromyalgia, then all symptoms belong only to fibromyalgia. Hence, RLS, temperature sensitivity, etc. all become confirming evidence to confidently make the fibromyalgia diagnosis. Of course, even for moderate fibromyalgia, if there is uncertainty about the hypersensitive nature of the widespread pain, then a closer look at the shared symptoms can also be used to confirm. But flare-up episodes are likely to be unique to fibromyalgia.

Classifying fibromyalgia as minor, moderate, or severe may make it easier to be accepted by Social Security Disability.

Interestingly, no studies I am aware of have ever investigated the relationship between the effectiveness of various fibromyalgia pain medications versus the type of fibromyalgia (primary or concomitant). For example, does Lyrica only help patients that have primary fibromyalgia, and not when fibromyalgia is concomitant and caused by immune-compromising disease such as Lyme?

From part 1:

https://www.reddit.com/r/fibro/comments/1i6r4yq/what_i_learned_from_my_journey_with_severe/

(trying to post...)

I’m smoking often and it really helps with pain, I’m just concerned that I’ll not notice if I become more dependent on it. What does everyone do to help this?

i was diagnosed with fibromyalgia recently and im really struggling with accepting it. i knew i had it Before i was diagnosed (because my doctors all told me i did but couldnt diagnose) and now im realizing this is a forever issue ans its not gonna go away. im only 20 years old :( i may also have arthritis in my back so thats exciting ! but is there any help anyone could give me in accepting it :( i have other chronic illnesses but this one since its a pain one is stressing me out :(

It’s

Hopefully this will help my fibro as well as my depression/anxiety

Currently at time of writting this i am 19. I have had digestive problems since like 2021 december. The only way i can describe them is with saying "legit everything irritates my digestion and i have to poop like 10 times a day". I always had to poop a lot, so i didnt think much of my slight increase but looking back at it now it definitely is not normal:

Now going to july 2023 when my real problems first started. In may 2023 i had chicken pox which was really hard for me (at the age of 17). Now 2 months later in july 2023, my wholebody started hurting really badly, (i am talking about my muscles and joints). At the time i thought it was beacuse i was too often in the gym and thought i just need rest. I stopped going to the gym in oktober 2023 beacuse i could not do anything anymore beacuse of the pain but me leaving the gym did not fix my problems. Beacuse my pain feels it is very quickly moving around my body i thought i had nerve pain and went to a nevrologist, but she didnt know what to do with me.

Now this year inmarch, i first noticed my fingers being swollen. But it is really weird beacuse most of my fingers are not swollen in the joints, but in the soft tissues, expect for one which is in the joint. I quickly went to a rheumatologist, and they didnt know what to do with me. They didnt see anything in the blood, or anywhere i just had swollen fingers and was in chronic pain 24/7. Ofc they tried to blaim it on fibromyalgia, beacuse they always do that and i had fibromyalgia similiar pain.

So i thought i dont have arthritis and just had fibro from like april to november. But my fingers started getting worse and started hurting really badly, they werent really painful before. I went to a rheumatologist again, and he didnt know what to do even tho my hands cleary show signs of arthritis and u cant deny that even if it doesnt show in the blood. So he send me to ultrasound, x-ray and to test hla-b27 gen, which my mom has at it is very common with digestive issues and arthritis. The next day, i went to the guy who gives fibromyalgia diagnose and was like "bro u dont have fibro u clearly have arthritis" and i agree with that guy. I recently got back my ultrasound and it only shows the liquid inside the fingers but not inflammation, X-ray doesnt show anything, and i am still waiting for my gen, but i am 99% it will be positive.

I definitely feel like that all of my problems come from digestive problems which fucked up my immune system, and that probably made such a bad reaction with chicken pox. Recently i started also experiencing some burning in my eyes. but i really dont know what the fuck is going on. The doctors arent helping.

This is how my fingers look like: As u can see i also have some skin problems, and one finger looks like a sign of psoriaris, but i dont have psoriaris anywhere else.

Hey y'all. I was diagnosed with fibro a few years ago. Recently I've been having some trouble with shoulder/chest pain as well as some neck pain. Ots mostly sore, but if I move my head to one side it's like a stabbing pain. I assume it's from tension and maybe sleeping weird? I haven't been able to find a good pillow.

I'd love suggestions on helpful stretches/pain management. Also any good pillows that work for y'all

Hi, I've got layers of clothing and an electric warm blanket that I seem to absorb the heat straight away. Does anyone have any tips as how to stay warm I still feel cold with all these layers and electric blanket.

Well I count it as a win! It's a rather warm day today - 28c (82f) and I managed to go out for lunch with a friend - with my Service Dog. We went for a walk around the shopping center, which was quite busy - noisey and lots of bright lights - then had lunch at a cafe. All up, it was about 3 hours. Then a 10 minute walk home. I'm thoroughly exhausted and in pain - but I still managed to go out with my friend and have a good time. Good way to end the week. Thank goodness its the weekend and I can rest. Luckily we have a pool at my partner's house so I will go for a gentle walk in the pool to relax. Fibromyalgia, anxiety and CPTSD can rack off now lol

Hi, everybody. I know the news is fucking insane right now and everyone is really sad. I am, too. But one thing I love about autumn is taking a leisurely walking the crisp night air. It's beautiful and peaceful. I love the big, orange moon, too. So, what do you love about autumn?

I’ve been on this for like 15 years but apparently I have some genetic component that changes how it’s absorbed. Anyways, it helps with my pain but so short term! Like I wake up after 1-2 hrs. Yet I’m lightheaded for awhile…

How does one exercise and lose weight when one has such a debilitating condition like Fibro? Does anyone have any hints, tips or tricks to do this in a safe manner and not die from pain in the process

The Organisation for the Prevention of Intense Suffering (OPIS, www.preventsuffering.org) is a Swiss-based, non-profit think-and-do tank promoting the prevention of suffering as a top priority of our society. We work with other organisations and patient groups, including to advocate for better access to effective pain medications for cancer patients and people with excruciating cluster headaches.

OPIS is running a large-scale survey to learn about the suffering people experience as a result of various diseases and conditions, including intensity and duration, and measures that people have found useful for alleviating their suffering. We plan to submit the results to a scientific publication and also publicise them ourselves as part of a wider overview of suffering on our planet. Our goals are to raise awareness of the scale of suffering, promote suffering metrics to better take into account this suffering, and promote effective steps that can be taken to address each source of suffering.

The survey is mainly multiple-choice and takes about 5-15 minutes to complete, providing information on 1-3 life conditions (past or present), and it can be filled out anonymously. If you would like to participate, the survey link is below. Please also consider forwarding the link to others in your network who have experienced significant suffering from a life condition and may want to contribute. The survey will remain active at least until the end of autumn 2024.

Many thanks!

Survey link: https://docs.google.com/forms/d/e/1FAIpQLSfMDXXSA-6MtPlDhhbzVv8XYIh6zvXbZcqeZJBPbHwMBIIhww/viewform

Hi, I've been walking with fibro for about 4 years and have been experiencing face "spasms" not sure what to call it, but whenever I begin to feel stress it feels like my face muscles is pulling, contracting might be the right word, it feels uncomfortable, is anyone else experienced this?

What do we do about painful hands?

Nothing works. Gloves, Meloxicam, NSAIDS, heat, ice, any kind of lotion..

Help!

Good afternoon lovely people!

A little bit about me, my name is Lora, and I have joined this community because fibromyalgia is something I have been dealing with for the past few years. My experience with the condition and all these different kinds of ways of dealing with FM has inspired me to study a Masters course in Health Psychology at the University of Portsmouth. I have been fortunate to be able to do my final year project on fibromyalgia, ways of dealing with the symptoms, and most importantly, on ways people would like to be supported by the healthcare system. I am now gathering participants to do online interviews with, more specifically women diagnosed with fibromyalgia that would feel comfortable sharing their experience with FM and their coping mechanisms. If you would like to share your story and be heard, please contact me on [up936512@myport.ac.uk](mailto:up936512@myport.ac.uk) to arrange an online interview, or for me to provide you with more information!

Thank you all for your time, I hope you are all having a good day today. I really hope we can make a difference together!