When Exercise Causes Harm
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- Опубликовано: 4 июл 2023
- Traditional therapy or exercise approaches do not work for patients with post-exertional malaise. Therapy providers and patients will need to adapt their expectations and approaches in order to reduce/prevent post-exertional malaise. Activity, heart rate pacing, and energy conservation strategies are helpful in reducing post-exertional malaise episodes.
While a subset of patients with orthostatic intolerance, Postural Orthostatic Tachycardia Syndrome (POTS), or preload failure may benefit from recumbent exercise or aquatic exercise; it is vital to screen for, monitor, and educate patients on pacing to reduce/prevent the likelihood of post-exertional malaise.
Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen.
This video was made possible by the OMF-funded Medical Education Resource Center (MERC) at BHC, our generous donors, and viewers like you.
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References:
Cheung K, Hume P, Maxwell L. Delayed onset muscle soreness : treatment strategies and performance factors. Sports Med. 2003;33(2):145-164. doi:10.2165/00007256-200333020-00005
Lewis PB, Ruby D, Bush-Joseph CA. Muscle soreness and delayed-onset muscle soreness. Clin Sports Med. 2012;31(2):255-262. doi:10.1016/j.csm.2011.09.009
Joseph P, Arevalo C, Oliveira RKF, et al. Insights From Invasive Cardiopulmonary Exercise Testing of Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Chest. 2021;160(2):642-651. doi:10.1016/j.chest.2021.01.082
Singh I, Joseph P, Heerdt PM, et al. Persistent Exertional Intolerance After COVID-19: Insights From Invasive Cardiopulmonary Exercise Testing. Chest. 2022;161(1):54-63. doi:10.1016/j.chest.2021.08.010
Ghali A, Lacout C, Ghali M, et al. Elevated blood lactate in resting conditions correlate with post-exertional malaise severity in patients with Myalgic encephalomyelitis/Chronic fatigue syndrome. Sci Rep. 2019;9(1):18817. Published 2019 Dec 11. doi:10.1038/s41598-019-55473-4
Lien K, Johansen B, Veierød MB, et al. Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome. Physiol Rep. 2019;7(11):e14138. doi:10.14814/phy2.14138
Lim EJ, Kang EB, Jang ES, Son CG. The Prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS Patients: A Meta-Analysis. J Clin Med. 2020;9(12):4040. Published 2020 Dec 14. doi:10.3390/jcm9124040
Chu L, Davenport TE, Stevens SR, Stevens J, Snell CR, Van Ness JM. Two symptoms accurately identify post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome. 2021 IACFS/ME Virtual Conference 2021 August 21, 2021; Virtual due to COVID-19 Pandemic.
Chu L, Valencia IJ, Garvert DW, Montoya JG. Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey. PLoS One. 2018;13(6):e0197811.
Rutherford G, Manning P, Newton JL. Understanding Muscle Dysfunction in Chronic Fatigue Syndrome. J Aging Res. 2016;2016:2497348. doi:10.1155/2016/2497348
van Campen CLM, Rowe PC, Visser FC. Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease. Healthcare (Basel). 2020;8(3):192. Published 2020 Jun 30. doi:10.3390/healthcare8030192
Vink M (2015) The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. J Neurol Neurobiol 1(4): doi dx.doi.org/10.16966/2379-7150.112
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Thousands of us were marathoners, triathletes, or endurance athletes before developing ME/CFS, often following a viral infection. We experience the precise symptoms described in the video, with the tingling sensation of lactic acid coursing through the limbs following the slightest exertions, extraordinary physical weakness, and other life-altering neurological problems. The fact that we are still, in 2023, dispelling this notion that all of this is “just deconditioning” or a deeply ingrained fear of exertion, advanced by psychiatrists and med professionals since the late 80s, is frankly an indictment of our entire medical system, power structures that permit underfunded conditions to become stigmatized, and systemic inertia that leaves med school curricula decades behind the current scientific understanding.
Well-worded. I too was really athletic lifting heavy in the gym before this. The worst is when you get misdiagnosed with fibromyalgia (my friend has that and her symptoms are VERY different from mine) and then they try to pressure you to take antidepressants - as if that will solve the problem!!! If it's an SNRI it actually makes orthostatic intolerance worse (if you actually have POTS). So in the end misdiagnosing hurts and worsens patients' conditions because they don't end up getting the corrective medical help they need. It's a form of medical gaslighting.
This precisely. The incongruity between what the research is saying (pacing is key, exercise can cause harm, the condition is physical and/or cellular in origin) and what has repeatedly been recommended to me by well-meaning physicians (graded exercise treatment or some version thereof) has been distressing. That the medical system not only is failing to recommend what the research indicates - but more than that, is recommending actively harmful "treatments" - is an ongoing betrayal. What would it take to educate physicians about this condition? To find actual treatments? To find a cure?
Before I knew anything about ME or PEM, I got into running/jogging 3 to 5 miles a day 5 days a week hoping to help. I had a dear friend tell me I needed to quit exercising and getting into shape because I was in better health before. Apparently, she knew more than she realized. I have been telling my doctor for the last several years that I was allergic to exercise or it was depleting my b12 (on weekly injections). They all just kind of laughed it off. I have finally now been diagnosed with ME after over a year of fighting Epstein-Barr.
EBV comes out more when we exercise. It got into my thyroid and still does once in a while. My dose started at 75.....now I'm at 200mcg to stay normal. The immune system attacks it to get the EBV. Anyway all exercise does is rob the immune system of basic level oxygen in the immune cells mitochondria....this causing a lowered immune system and increase in viral infections. Get your thyroid checked regularly. I don't feel my best unless I max out my dose to reach high normal range.
@@losbanos999 I'll be 60 next month and been on thyroid meds since I was 11 so I definitely know about keeping my thyroid optimal. I was without meds a week one time and honestly thought I was dying. We check everything every 6 months, 3 months if I'm having issues.
@@losbanos999 How do you know it got into the thyroid? My EBV got treated alternatively and since then my throat's been spasming, I think the infection had calcified (so no thyroid disease) and that's being driven out, mainly because it's making a cracking sound.
@@themupsmuppet That sounds different. I would ask a specialist to check it out. Viral infections due to CFS lowering the immune system usually causes your immune system to attack the thyroid...the good and infected cells together. EBV and hpv-6 or hpv-7 (I forget which) is the other main virus that will get into the thyroid. Once the thyroid cells are dead, they never grow back, much like the liver. I'm now at 200mcg levothyroxine. Good luck!
@@themupsmuppetit might be esophageal spasms
Just to clarify (for me at least) the delayed onset muscle soreness (DOMS) that healthy people get (and that I got after hard training sessions when I was healthy) is COMPLETELY different to PEM symptoms. I don't think they are caused by the same thing. I still get DOMS sometimes and it's no big deal. PEM however completely destroys me. They don't feel at all similar. DOMS for me is stiff and sore muscles which improves with gentle movement and a few days of time. It's not a full body system thing - it's just a one or two sore muscles. PEM is a full body system thing. It doesn't just affect the muscles you used. It's like the worst hangover ever - feels like flu with severe dehydration, all-over weakness, too exhausted to breathe or speak, shooting pains (completely different pain to DOMS), sound sensitivity and pain in my eyes, ears and face, migraines, nausea and vomiting when really bad, buzzing sensation in all muscles, breathlessness, light-headedness, pounding heart, chills, hot flushes... It's a completely different beast to DOMS. It's not a more severe version of DOMS either. It's not DOMS at all - they feel completely different. DOMS is a normal healthy response to overworking a muscle. PEM is a sickness.
15 years with CFS now. I'm a male. My muscles are disappearing everywhere. No way to lift weights and rebuild muscle. That breakdown -rebuild process is broken with CFS. So I struggle now with strength in my arms. Another thing with PEM...the more you try to exercise, the lower your immune system gets....lowered WBC due to fighting viruses all the time. This is a vicious cycle, where I see no escape from. The worst thing is the muscle loss with no way to rebuild. Men....any temp solution to build muscle back?
Same boat bro. I was in the best shape of my life 6 months ago when I started having PEM. It is disappearing by the hour and I’ve lost about 15lb of muscle. I think your best bet is finding the root cause and treating that. I’ve been trying to lift a little every few hours. Don’t go over 30 seconds. And take long breaks in between.
@@eddie8489 Thanks bro. In 15yrs I recovered twice....once only 6 months after getting it, and the last time I recovered was in 2014...so 9 yrs ago. I have 9 yrs of muscle wasting. Lifting weights doesn't help build any new muscle. Both my recoveries was only for a month each time....then the relapse back into it. General muscle weakness is a symptom of CFS. If you don't have general muscle weakness, you probably don't have CFS. If you are fortunate to recover like I did....it will last only a month. Lift and build muscle like crazy until it comes back, because it will. The problem with CFS is mainly in the gut. Good luck.
@@losbanos999 sorry to hear that man, hoping a treatment or cure comes around Soo. I do have very bad weakness but not sure if it’s CFS. I definitely have PEM. But few things can cause PEM not just CFS, any cardiovascular insufficiency that limits oxygenation of tissue can cause buildup of lactic acid and other by products which make us feel sick after exertion. And yea I have not recovered yet and not sure if I ever will. What triggered your CFS?
Look into a new peptide drug called MOTS-C. I started it myself 4 weeks ago.
Hey I'm not a guy, but I was a personal trainer and been lifting for a decade with considerable muscle tone for my petite lady frame (I'm a hard gainer). I'm not sure about trying to 'build muscle back up' but to avoid further muscle atrophy I'd suggest:
1) Get plenty of protein with each meal and aim for no less than 1 gram per lbs of body weight daily, or even double that ratio if you can tolerate that. Keep feeding the muscles you do have to maintain them.
2) Amino acids/recovery drinks with l-glutamine - so you just climbed the stairs and did laundry and feel gassed? Take a recovery shake. Treat your body when it's had a workout that feels comparably as exhausted as bodybuilders in the gym.
3) If you for sure don't have an autoimmune disease or cancer (like your doc will sign that off first) you could try cordyceps mushroom supplements daily, starting at about a 400mg capsule. Keep a diary for a month with activities and symptoms - levels of energy, breath, heart rate (before resting/after exerting) and see if this helps with fatigue vs. ATP/energy generation.
4) When you feel PEM, don't push it. Tell your inner Arnold to shut it (I have to do this to give myself permission to rest). Remember, muscles don't build without rest/recovery days. They work, need nutrition and then restful sleep to recover and rebuild.
Thanks for the video.
It has been 30 years now and no Doctor has given me a diagnosis yet. I have told them for that 30 years when I exercise I am in bed for three days and it is very hard to just get up and go to the bathroom never mind eating anything healthy, it is just easy food to eat. Use to be a 350lbs weight lifter in my early 20's now just a 350lb fat person who can not even shop for food with out help, thanks to covid they will deliver my food.
Thanks to one of your videos now I know what is the problem, now a Doctor in Canada has to diagnosis me, and from what my GP tells that could be a very long process.
Sorry for venting, just lots of frustration, there has to be a diagnosis before I can get any help with this in Canada, and after seeing 4 rheumatologist they informed me that they have never heard of such a problem, of me exercising and then being in bed for three days, and never be able to reach that level of exercise again.
Wish there was somewhere to go and see a proper doctor.
Thank you very much! We would love to have it with spanish subtitles so our community and doctors can access this information.
I think you have a form of Dysautonomia, in which your sympathetic nervous system is affected. Speak to your doc about that, and snout finding you a specialist for this.
I have to step in on behalf of rheumatologists, as this misinformation may mislead and prevent others from seeking help: rheumatology is an extremely difficult speciality to get into, and they're also trained to approach each patient with empathy, to which l can 100% attest, and is totally contrary to my experience. Not only that, but the wait time to see a rheumatologist is one of the longest, on average 5 to 7 months. They are so rare that people in rural areas travel up to four hours to visit one, to which l can also attest. How you were able to see four defies belief and moreover, they are well-versed in the interconnections between autoimmune and neurological disorders, both of which l have in the form of systemic scleroderma *and* ME/CFS and CRPD. It was my rheumatologist who sent me to my pain specialist. They both are aware that "exercise" takes on a new meaning. Were these four doctors actually rheumatologists - for l cannot fathom that even one would have been so dismissive? Perhaps there is a communication gap that a GP could help you bridge. Best of luck, for help is out there - bearing in mind you'll never feel like your old self again. It's a poor hand we've been dealt.
I am having PEM and my gene testing has come back with an MYLK mutation. MYLK activates contraction of vessel walls and since mine is defective it leads to excess vasodilation. This leads to POTS, OH, and the preload failure that leads to PEM. Hoping medicine catches up to fix this but not holding my breath.
What gene is this mutation on? How is it called? Going to do the Promothease
@@lisarnsnk it’s on standard connective tissues panels, it’s called MYLK, associated with aortic aneurysms
Hi is there a particular test I need to ask for when getting my genes tested and do you mind sharing who you used for your testing? Thank you!
Also I thought mestinon was good for preload failure?
I'm so sorry you are suffering! ❤❤❤ I hope things have improved. Your comment was very interesting. I can't get even the most basic care for issues other than ME, and I am severe/very severe. I had no idea there was genetic testing. Was that helpful to learn?
Thanks for this awesome video and understanding!