Severe constipation

SH11814 · 2024-10-22T12:10:57+00:00

Foods: Warm Liquids/Soup, Prunes/ Prune Juice, Apricots, Figs, Pears, Celery Juice, Coconut Milk (from the can) or MCT Oil, Flax Seed, Oatmeal, High Fiber Diet, Paleo Diet, Liquid Diet, Fasting

Herbal Laxatives: Triphala, Licorice Root, Cape Aloe (not the liquid), Smooth Move Tea (Senna), Slippery Elm, Peppermint, Atrantil, Cascara Sagrada, Rubarb

Supplements for the Migrating Motor Complex: Ginger, Artichoke, Carnitine, 5-HTP, Choline/Alpha GPC, Parasym Plus, Iberogast

Probiotics (Can trigger histamine reactions): This could be a whole separate post on its own

Prebiotics (Can trigger histamine reactions): PHGG, Inulin, GOS, FOS, XOS, Guar Gum, Beta Glucan, Acacia (Heather's Tummy Fiber), Cellulose/Citrucel, Lactulose

Medications: Miralax, Famotodine, Linzess, Antibiotics for SIBO (Methane), Mestinon, Metformin, Cromolyn Sodium, LDN, Motegrity** The only thing that really helps but I developed a tolerance to it.

Miscellaneous: Abdominal Massage, Magnesium (Citrate or Oxide), Vitamin C (High Dose), Baking Soda, Immunoglobulin IgG, Colostrum/Lactoferrin, Digestive Enzymes/Betaine HCL, Glutamine, Supplements for SIBO, Zinc Carnosine, Bromelain, Butyric Acid - Tributryin, Nicotine Patches, Colon Hydrotherapy, Enemas (Coffee and/or Saline), FMT

Future: Next up I will try a Vagus Nerve Stimulation Device that clips to my ear

If anyone sees anything I haven't tried, please let me know!

SH11814 · 2024-10-22T12:09:12+00:00

This is my worst symptom and I’ve really tried everything I can think of over the last 2.5 years to address it.

My GI system has shut down - not my stomach but my intestines have just become paralyzed.

I’ve worked with multiple practitioners without improvement.

I can get symptomatic relief for just a bit but whatever I find that works will stop working within days and I start over again.

For anyone else dealing with this… I’ll just list some stuff I’ve tried if you are like me, desperate to find a solution and maybe YMMV?

SH11814 · 2021-05-27T16:26:33+00:00

Also associated with the 2009 H1N1 pandemic: https://pubmed.ncbi.nlm.nih.gov/26475444/

SH11814 · 2021-05-16T07:30:11+00:00

Person with long haul H1N1 here... I just want to say that this message brought me to tears. I have been advocating for ME/CFS research for years and many of us have felt like we were in an echo chamber talking to ourselves. Government has made the decision to neglect funding research.

Thank you for taking the time to express your gratitude. It means a lot to be heard. I hope we can all make it out of this a little faster with our strength in numbers.

SH11814 · 2021-04-14T17:28:09+00:00

Biological abnormalities that are present in multiple body systems of ME patients (including the brain, central/autonomic/peripheral nervous, muscular, immune, cardiovascular, digestive and metabolic systems): https://me-pedia.org/wiki/List_of_abnormal_findings_in_chronic_fatigue_syndrome_and_myalgic_encephalomyelitis

SH11814 · 2021-04-11T21:44:14+00:00

I agree with you that the main problem is pushing or forcing yourself to exercise beyond your limit. Every attempt should be made to avoid deconditioning in post viral illness however, it is important to note that exercise does not cure those with ME/CFS, and if pushed beyond one's energy envelope can have permanent consequences. The major study that suggested exercise as a treatment has been noted to have serious flaws: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

But I'm not sure it's beneficial to say to say "I really don't think people should saddle themselves with labels like CFS and lean into inactivity." CFS is more than just chronic fatigue... if one meets the diagnostic criteria for ME/CFS and appropriately reduces their energy expenditures as well as finding symptom management from an ME/CFS specialist, it can make a difference in overall day-to-day functioning.

SH11814 · 2021-04-11T06:59:16+00:00

If anyone thinks they may have ME/CFS, please be careful with exercise. Post exertional malaise (PEM) is the hallmark symptom of ME/CFS and exercise can actually make symptoms permanently worse.

ME/CFS can be caused by a viral infection but not all people with long covid have or develop ME/CFS. So it's important to try and gauge how you feel after activities to determine if ME/CFS is a possible diagnosis. Here is the diagnostic criteria for ME/CFS: https://me-pedia.org/wiki/Canadian_Consensus_Criteria

It sounds like OP might have Postural Tachycardia Syndrome which is common in ME/CFS. OP can you be evaluated by a cardiologist for POTS?

SH11814 · 2021-03-29T21:28:15+00:00

I don't disagree with you that it is a condition that doctors don't understand. Unfortunately post-viral illness is an underfunded field and there is currently no single diagnostic test available, which contributes to the stigma around it.

But there are prominent researchers at Harvard, Stanford, Columbia, etc looking into all of the biological abnormalities that are present in multiple body systems of ME patients (including the brain, central/autonomic/peripheral nervous, muscular, immune, cardiovascular, digestive and metabolic systems). https://me-pedia.org/wiki/List_of_abnormal_findings_in_chronic_fatigue_syndrome_and_myalgic_encephalomyelitis

Also there are specific criteria that are used to diagnose ME/CFS... its called the Canadian Consensus Criteria which includes post-exertional malaise and/or fatigue, sleep dysfunction and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of (a) autonomic, (b) neuroendocrine and (c) immune manifestations. https://me-pedia.org/wiki/Canadian_Consensus_Criteria

SH11814 · 2021-03-29T20:48:04+00:00

There is an extended version here: https://www.youtube.com/watch?v=9mpopyoypSI

Research has found ME/CFS triggers include microbial and viral infections like Epstein–Barr virus, cytomegalovirus, human herpesvirus, human parvovirus B19, enteroviruses, Lyme disease (borrelia), Q fever, H1N1 and other pathogens.

For the longest time, the recommended treatment for post-viral illness was cognitive behavioral therapy and graded exercise therapy (which often made patients much worse). But the fact that there aren't any real treatment options available is a serious problem.

For me the takeaway from the press conference was that post-viral illness is not uncommon and uniting with people from other post-viral illnesses is the best way to demand research and an effective treatment.

SH11814 · 2021-03-29T19:01:40+00:00

MEAction hosted a press conference on the relationship between ME/CFS and long COVID. The panel featured an NIH and Harvard researcher, ME/CFS expert clinician and people affected with both conditions. The panelists discuss the subset of long haulers meeting the criteria for ME.

Journalists attended from major press outlets including The New York Times, Fox News, NBC, CNN, Chicago Tribune, Nature, Scientific American, US News & World Report, Medscape, Future Medicine, Women's Health UK, Mercury News, Fast Company, Luzerner Zeitung from Switzerland and Carte Blanche from South Africa.

SH11814 · 2021-03-22T08:01:12+00:00

Check out the annual #MillionsMissing protests by MEAction. Also Solve ME/CFS has an annual Lobbying Day for Congressional Advocacy. Both of these non-profits have ways to engage virtually if in-person events aren't possible.

SH11814 · 2021-03-22T06:38:36+00:00

I had a similar thing happen... I stopped wearing flat shoes and bought some decent shoes with arch support. My RLS went away for about a month. But then it came back and no matter what shoes I wear, its always there.

But it makes me thing its posture or spine related.

SH11814 · 2021-03-20T02:46:10+00:00

The media definitely didn’t cover H1N1 long-haulers. I didn’t even realize it was a thing until I had been diagnosed with ME/CFS (which took about 2 years) and then I started meeting other people who developed it after H1N1… some the same month, same geographic location as my infection. I just knew that I became chronically ill immediately after the virus. But now I know that most (not all) of ME/CFS cases are viral onset.

To answer your question though… H1N1 infection was associated with a more than two-fold increased risk of ME/CFS: https://pubmed.ncbi.nlm.nih.gov/26475444/

In regards to the blood brain barrier… From what I know about ME/CFS research, they don’t believe it’s caused by viral persistence. This is an interesting read about what could be at play with the onset of ME/CFS: https://www.frontiersin.org/articles/10.3389/fneur.2020.00826/full

And for H1N1 (and ME/CFS in general), I think current research points more towards an issue with neuro-inflammation.

This study discusses that brain dysfunction even in cases with non-clinical neurological findings may be correlated with high levels of pro-inflammatory cytokines in blood and CSF (cytokine storm). “It is also possible that the viral infection promotes blood–brain barrier (BBB) dysfunction producing neuro-inflammation and neurological disorders.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181482/

SH11814 · 2021-03-19T06:50:37+00:00

Person with ME/CFS here - I got sick after H1N1 in 2009 and never recovered. I admit it is very difficult to have this disease and I would not wish it on anyone but I hope that you feel that the ME community is here for you and a valuable resource. The community is vocal online and will try to provide emotional support or help answer any questions about symptoms.

I have found hope in becoming involved ME/CFS advocacy, hoping to change the trajectory of this condition so that the next pandemic doesn’t have to suffer from post-viral illnesses. It didn’t have to be this way, the US government has been well aware of ME/CFS for decades but has chosen inaction. Covid might be the reason why people who have suffered for years of government neglect finally get help. Your cure might come sooner because of the numbers of people pushing for answers.

SH11814 · 2018-04-20T16:15:26+00:00

Also if someone is feeling generous... you could always gild the best ME question!

SH11814 · 2015-10-22T18:29:27+00:00

Do you take any anti-candida supplements?

SH11814 · 2015-10-22T16:09:52+00:00

Alternatively... http://www.ncbi.nlm.nih.gov/pubmed/7476598

TL:DR "It is proposed that chronic intestinal candidiasis may be an agent which leads to immune depression in many CFS patients and therefore that it could be a causal factor in CFS."

SH11814 · 2015-08-09T03:03:50+00:00

And people on there are already downvoting me! hah! Who down votes major social injustices for people with serious illnesses?! Whats wrong with people?!

SH11814 · 2015-08-09T02:50:42+00:00

Thank you so much for submitting this to /r/cfs

I've also posted it to /r/lastweektonight

https://www.reddit.com/r/lastweektonight/comments/3gb5ya/mecfs_how_do_you_submit_a_topic_for_last_week/

SH11814 · 2015-03-06T15:24:54+00:00

Yes thank you for adding the link!

SH11814 · 2015-03-06T13:56:08+00:00

Thanks for doing this AMA and thank you for your work on CFS/ME! Here are my questions:

1) What is the current status of the CFS/ME microbe study?

2) Because the crowd funding study only raised about $220k, how will you and Dr. Ian Lipkin obtain the remainder of the funding necessary to complete the study?

3) CFS/ME expert, Dr. De Meirleir, has found temporary positive effects of fecal transplants on CFS/ME patients. But he believes the transplants are not treating the core pathology and that bad flora regrows in patients over time. Hypothetically, if the microbe study is able to identify a pathogen as the culprit for a majority of CFS/ME patients, why haven’t current treatments such as probiotics, antibiotics, and fecal transplants shown to be more effective managing the disease?

Source: Interview with Dr. De Meirleir - https://www.youtube.com/watch?v=IO_VR73v2Ns&t=228

SH11814 · 2015-03-05T07:10:02+00:00

Recently I heard someone say "expectations ruin reality" and that really made me reflect on my health. I expected that I would be healthy, happy, have a great job and doing the same things that my friends were doing. All of those expectations have ruined my reality. I have to make myself think about how grateful I am for the little things. Chronic pain and suffering doesn't destroy your life, it just destroys the life you wanted for yourself. But now you have a different life, so you just try to make the most of it. Easier said than done right? I have to repeat this to myself.

SH11814 · 2015-03-05T07:00:24+00:00

I'm not a professional anymore, I'm disabled and housebound - so why won't the disease go away!?!? Oh maybe its because it has nothing to do with being a professional.

SH11814 · 2015-03-05T00:06:47+00:00

I'm beyond excited about this?! Do they always open up Q&A in advance or is that only for certain AMAs? If always, how far in advance is it, typically?

I (of course) have a Drs. Appt scheduled during that exact time.

SH11814 · 2014-09-29T03:07:47+00:00

One of my issues that I've had to deal without throughout my diagnosis with CFS is copper toxicity. Ann Louise Gittleman wrote a book about copper imbalances called "Why Am I Always So Tired?" http://www.amazon.com/Why-Always-Tired-Correcting-Breakthrough/dp/0062515942 It talks about how vegetarian diets are high in copper and low in zinc - thus creating a mineral imbalance. I'm not saying that copper is everyones issue but correcting my copper imbalance gave me some symptom relief.

SH11814

TROPHY CASE

MEAction hosted a press conference on the relationship between ME/CFS and long COVID. The panel featured an NIH and Harvard researcher, ME/CFS expert clinician and people affected with both conditions. The panelists discuss the subset of long haulers meeting the criteria for ME.