Diagnosed with chronic fatigue syndrome about 18 years ago and moved into Fibromyalgia years later. I guess the two conditions are interrelated. My neurologist told me that the origin of these conditions is fundamentally a sleep disorder and the way you diagnose them. Pharmaceuticals never worked for me all putting me into a literal coma and unable to function. The true secret lies in acceptance, quality and consistent good sleep hygiene, and balancing every day with consistent movement consistent periods of rest throughout the day. I definitely have food triggers but mostly they disrupt my sleep which causes the increase in pain and fatigue. It's very hard to baby yourself when you feel good. I try and sneak up on my exercise with micro increases and trying not to under do or over do. 20 minute walk, 20-30 minutes of yoga and stretching took me 2 years to get here. Drugs set me back and although may feel like sleep, I still think they rob quality sleep. Most of this information in the video isn't new, it's the same as 20 years ago. I wish more progress was made on this syndrome to bring so many people a solution.

Dr. Makey! Ding, ding, ding! Diagnosed with fibro in 2017. Rheumatoid Arthritis in 2020 and Sjogrens in 2022. I agree with everything Dr. Mackey said. Meds (Savella and biologics for the RA) keep me active and moving. If that’s what you choose as treatment don’t feel bad. Hot hands wouldn’t do anything for me but make my hands hot. SLEEP! Being prescribed a mild muscle relaxer has helped. Better nights definitely makes for better days. LDN. Try it. It has helped with fatigue and a little bit with pain. No side effects. Exercise..I do yoga and always wondered WHY, even after years of practicing yoga..it still hurts. So happy to hear that research is ongoing and patients are getting better treatments. Thanks Bob and Brad for the very informative and vindicating pod cast. Fibromyalgia is real and it’s not in my head.❤️

I hope this reaches someone in research - I believe a great diagnostic test would be a nerve conductivity test.  I was seen by a neurologist for widespread pain and neuropathy down both my arms.  (Caveat: I had widespread pain down my entire body, but I went in for inability to use my arms during a horrible flare up).  When they did a nerve conductivity test on my arms, the technician said I had the fastest firing nerves he’s seen in 13 years.  This data is what ultimately led the team to suspect fibromyalgia.  I was put on Cymbalta and two weeks later, I got my entire life back.  It didn’t cure me, but it gave me a reasonably good quality of life that I otherwise didn’t have.  I wonder how often nerve conductivity tests are considered?

If it’s clearly a neurological condition, why do they keep sending us to Rheumatoid?  When we ask our primary care physicians for referrals to someone who specializes in fibromyalgia- is a neurologist we see? Rheumatoid? …

Fantastic speaker!  He was so details in describing the ins and outs of fibromyalgia and it has help me feel like I’m not imagining it all.  Thank you!

Thank you both for this podcast. I have been diagnosed with FM for over 30 years. I have been fortunate enough to maintain an active lifestyle. My best day pain level is about a "3". I had to laugh b/c except for chronic low back pain, I think I have every related condition. 🙂 Keeping my body moving, getting good sleep, taking decent supplemens, trying to eat healthy and staying positive seems to be what works best for me. I do take low dose naltrexone and cyclobenezeprine (b/c Tonmya was too expensive).  Thanks again.

I've had Fibro for over six years. Before that I was going through some chronic anxiety and occasional IBS. I still have the IBS which seems to be a common thing. I also have Hashimoto's (thyroid) which can be quite common with fibro.
Other symptoms that I experience are somatic tinnitus, only in the left ear, noise, light and smell sensitivities and tension headaches. reducing stress and high glycemic ultra-processed processed foods seem to help me the most, and also the ketogenic diet seems to calm my brain... These things make life more manageable but it's always there, ready to flare up if I get to complacent.

I am on Venlor 150mg (Venlafaxine). And its helping alot. I just have to manage my energy and not overdo it when I exercise, because it will cause a flare. Majority pain is gone. I am very grateful for that.

Low dose naltrexone has saved my life. If I don’t take it I get flared to the point where I can’t have clothes touch me. I also take pregabalin and duloxetine but I’m gonna try to try the other one mentioned

be wary of such a diagnosis. Not for why you think.

I found out the hard way that this diagnosis sitting in your medical records can socialist you for life and supplemental insurance such as short-term, etc.

See doctor. If you suspect fubromalsgia, tell Doc you don't want that on your records if that's the diagnosis. Hey the treatments (there're more than mentioned here) but keep your records clean.

My wife is found lots of relief in two separate peptides. Ara-290 and kpv

Why can’t I find this kind of help in Canada? 😢😢😢😢😢😢

❤❤❤thanks 👍 amazing

I began to tune your guest out when he shifted to drugs to tamper with the brain as a means of masking fibromyalgia. As an RA patient with bouts of fibromyalgia, by accident, I discovered that putting Hot Hands brand toe warmers in my shoes during the winter months to soothe my cold feet also created a warming sensation up my legs to my body, thereby tapering down a bad fibromyalgia "attack" and sometimes calming it all together.  I extended this remedy to year round with favorable results.  IMO, this is a much better mechanism that fooling with the brain with drugs!  As for pain after doing too much on a "good" day, my rheumatologist  advised performing activities in 20 minute intervals.

The pain keeps me bedbound, and the medical care here is lousy. Zero pain relief. Zero life. Another argument about gabapentin which is a nightmare. But all the people I saw got paid... lucky them. I woukd so love to take a walk.  

The actual pain medicine I used to get worked. Now I have a living death.

أشاهد البودكاست الآن و أنا مستلقية على سريري ، لم انهض من فراشي منذ استيقاظي الساعة 8:00 صباحا و الآن الساعة 10:55 صباحا ، إنه ألم فضيع يجعلني أشعر و كأنني امرأة عجوز بعمر ال 120عاما أو أكثر 💔رغم أن عمري 25 سنة فقط و مصابة بإكتئاب و فيروس فالطفولة ، و معاناة مدة 17سنة أتمنى أن يتوصل العلماء إلى علاج فعلي في اقرب وقت.

Well that was dismal.

LDN didn’t work for me 😢

There is no cure.

High insulin.