Potential linking FM, mast cells, sleep deprivation, food intolerance, exercise intolerance and ME?

Merida

Well-Known Member
@Issie
Thank you for the detailed look at attempted improvement. Yes, the Chiari surgeries are only about 50% effective, so the specialists are trying to figure out who will do well with surgery. No surgery for me. Had 2 invasive procedures and got worse.

I also think dopamine is an issue with me. Have some evidence and a 'feeling' about it from what I know. I did so much searching and reading in the literature over the years - but just exhausted from it all.

Have turned my case ( more or less ) over to my acupuncturist ( of 15 years) who is also a Chinese medicine doc. ( was an orthopedic surgeon in China) He said he can boost my immune system. So, I am trying that - and hoping it doesn't get over boosted and through me into a hyper state - which could happen.

Had a conversation with a very good psychic/medical intuitive. She thinks the basic problem is Epstein Barr. And it could be.

Anyway, sure admire your persistance, and I sure hope it pays off. More hugs.
 

Issie

Well-Known Member
@Merida thanks for the hug.....can't have enough of those! Back to you (((((HUG))))).
It is always a journey and quest for the better "bandaid". At our age, not thinking we will have a complete cure. But better quality of life and being able to keep going and functioning with less pain is a good goal.
I will be adding some information about what I'm doing to help with virus and how that is going later.
I think there are many facets to our puzzles and all are different. We are just high quality, multi faceted diamonds, aren't we. Maybe a little in the rough, waiting to be artisticly discovered and shaped. If we can sort our WHYS, then we may can do something about them.

Issie
 

Merida

Well-Known Member
@Issie - Yes, we are different in other ways. I suspect in ancient times we were the ones that helped the tribe - with certain 'knowing' and foresight and insight. I expect there are wonderful intellectual/other gifts in your family too. My brother was a structural engineer, with Dick corp, and he only had a high school education. He just self taught how to fix earth movers and run giant cement pumpers. Dick Corp sent him around the country to train others. He also has lots of symptoms - has been couch ridden ( age 75). Started suddenly years ago after a virus. But now CDC positive for Lyme - has a pic line.

Anyway, love talking with you. Will try to message you and give you my number. Maybe we can chat some day.
 

Issie

Well-Known Member
Sorry to hear about your brother. Lyme is hard to get tamed. I've been working on it for awhile now.
Thanks for your PM and number. At the moment mostly texting and emails. Talking rather draining for me. But, will keep your number for a better day. Those will come, as I feel I'm slowly improving and finding more answers. In the meantime feel free to PM me, here on the forum, and we can text.

Issie
 

Issie

Well-Known Member
I am using PEA and am off Tramadol and Bentyl for over a month now. PEA helps pain and also moderates glutamate. My sleep has also improved and I'm now dreaming, which I never did before. (It seems to take a little while to build up to be effective. I'm using 2 x 2 times a day. My sis is also using this and find it helping her too.) Tramadol had helped my overactive autonomic nervous system from HyperPOTS and FMS and slightly took an edge off pain. Bentyl helped muscle spasms and IBS. With this supplement, I'm managing (maybe not quite as well, but well enough). I've been much stricter on diet and added a few other supplements I'll talk about later.

(The one I'm using also has lutolin and both these help MCAS too.)

Mirica® - Pea (Palmitoylethanolamide) and Luteolin - Natural Pain Relief - Made with OptiPEA® from The Netherlands - Anti-Inflammatory Supplement - 60 ct https://www.amazon.com/dp/B07365MZLY/ref=cm_sw_r_other_apa_i_eEvNDb3WE7RVN


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394492/

"The effect of palmitoylethanolamide (PEA), an endogenous fatty acid amide displaying neuroprotective actions, on glutamate release from rat cerebrocortical nerve terminals (synaptosomes) was investigated. PEA inhibited the Ca2+-dependent release of glutamate, .......... Based on these results, we suggest that PEA exerts its presynaptic inhibition, likely through a reduction in the Ca2+ influx mediated by Cav2.1 (P/Q-type) channels, thereby inhibiting the release of glutamate from rat cortical nerve terminals.

http://www.druglibrary.org/crl/neurological/Skaper et.al 96 Excitotoxicity_ ProcNat'lcadSci.pdf

" Glutamate stimulates both N-methyl-D-aspartate (NMDA) and non-NMDA receptors. While activation of NMDA receptors has been implicated in a variety of neurophysiologic processes, excessive NMDA receptor stimulation (excitotoxicity) is thought to be primarily responsible for neuronal injury in a wide variety of acute neurological disorders including hypoxia±ischemia, seizures, and trauma."

"Here we report that palmitoylethanolamide, but not the cognate N-acylamide anandamide (the ethanolamide of arachidonic acid), protects cultured mouse cerebellar granule cells against glutamate toxicity in a delayed postagonist paradigm."

https://enacademic.com/dic.nsf/enwiki/11785492

"PEA has been shown to have anti-inflammatory[2], anti-nociceptive [5], neuroprotective[6], and anticonvulsant properties [7]"

https://www.researchgate.net/publication/280908314_Palmitoylethanolamide_reduces_pain-related_behaviors_and_restores_glutamatergic_synapses_homeostasis_in_the_medial_prefrontal_cortex_of_neuropathic_mice

"Palmitoylethanolamide reduces pain-related behaviors and restores glutamatergic synapses homeostasis in the medial prefrontal cortex of neuropathic mice."
 

Issie

Well-Known Member
I have talked about my adding something for virus and it also helping Post Lyme syndrome. There has been question in regard to virus/retrovirus in ME/CFS and many other illness, for that matter.

As many know, I attribute my ME/CFS, FMS and downward health to a vaccine I got when around 8 years old. (Yes, I have had a lifetime of trying to deal with this. But, have managed to have a pretty good life --- despite myself.)

My Functional medicine doc suggested to me an herb that is being used for these things and I had already purchased it before she told me. (Another researcher had tuned me into it already.) I had not started it as it could cause a most horrible rash and I needed to make sure my liver was up to the job of detox before I wanted to attempt it.

Attempt it I have, with no rash. Started out too strong a dose and caused some really bad reflux and not desiring to eat. Have backed off on dosage and started with less dosage and less times per day. Now up to 2 times a day.

Not sure how much this is playing into things, but this along with daily enzymes several times a day.....seems to be swinging me into a good direction.

One thing I have noticed is some lipomas that I have had since my 20s are nearly gone. These were rather large and one a doc felt the need to MRI. Nearly gone. (Since I also have a brain tumor and multiple thyroid tumors-----hoping this is helping those too.)

I feel my energy increasing. Seem to have less weakness. My brain and cognitive function greatly improved. (Again, other things I'm taking affect these things too.)
This is only one thing that may be having an effect. But worth noting.

Here is information on this herb - Lomatium. This company has a good write up about it. Not the brand I'm using however.

https://barlowherbal.com/blogs/blog/the-super-natural-power-of-lomatium
 

Issie

Well-Known Member
A follow up from me......
I no longer need the Velvet Bean.....seem to be balanced out with just Clari T with the brain fog/cognative issues.

And we talked of histamine earlier in this post......here is an update.

I have been off all my MCAS (antihistamines and mast cell stablizer) and POTS medicines (Tramadol and Bentyl) for over 2 months now. I'm following a new approach to MCAS of resetting the H2 receptor with an external cream with histamine in it. I don't have it completely sorted. But am very hopeful. I will post a link to the book and guy who directed me to it.

Mast Cell - Histamine (Immunotherapy With Histamine) | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums

It seems histamine plays a large part in our Autoimmune system, Inflammation and cytokines, Suppressor T Cells for inflammation and even our neurotransmitters.

Also plays a part with glutamate (of which this post has a lot written about). I have thought glutamate may be one huge part of our picture, especially with POTS. And I still think so, but possibly histamine plays an even bigger role. Especially with many of us POTS people having MCAS. And now more and more ME/CFS patients finding this as an issue.

This is definitely worth looking into and more research done!

I have researched much supporting literature of histamine being used effectively for many illness. (ALS, MS, Leukemia, cancer, etc.) I had never heard of it before as a therapy. Its definitely not what we would ever think to do. And not what I had been doing for pretty severe MCAS. I worry to think what my non stop use of about 8 years of antihistamines may have contributed to - taking them, thinking I was helping myself, out of ignorance. And not knowing any other way. They were not being very effective for my symptoms and my brain fog and cognitive issues were getting worse.

It's an experiment in progress.....but I'm very hopeful.
 

Issie

Well-Known Member
Trying to find another way to tame down these trigger happy, over responding mast cells......is the goal. I'm not having a huge success with the cream I'm trying now, but have another one ordered - with less ingredients. It's not a goal to add more histamine to the body. The goal is to stop so much over production of the body own mast cell degranulation. Trying to get the suppressor H2 and H3 to easier detect when it is there and maybe stop the so easily triggered mast cell response. Sort of an immunology type treatment.

It's still an ongoing experiment for me. Not there yet......
 

Larry

Member
As someone who has recovered, mentored by other recovered people. I'll try and offer some perspective here.

All of this micro analyzing of how the body responds to what chemical, under what conditions, causing what circumstance is LIKELY ALL TRUE. All we are doing is trying to understand the body's stress response system. The real question is what do we do next? How can we take action despite our limitations?

Well, we can spend our lives quantifying the mechanism behind this. Let say we do that. What is the expectation? Is it that we find a drug or procedure that miraculously reverses the condition? Ok, that would be great. BUT...lets look at reality as it actually is. Where is there a chronic medical condition that has been miraculously reversed by the western medical approach? Please name one.

In every case of chronic illness in the body, we are learning that it is a late stage of a chronic stressor being applied to the system.

It makes far more sense to investigate what the chronic stressors are and remove them from the system. The problem is, that the ego separates us from knowing what is causing stress so that we remain unharmed. This is great way to keep us moving forward no matter what....until we are broken. Then what?

It is my experience that when the body is in a chronic state of disregulation, our thoughts will then be reflective of that state. Just like the exhaust from a car engine is the product of that engines state of being. A solution in this disregulated state IS NOT POSSIBLE. No matter how structured one's thinking can seem, no matter how experienced someons thinking may be through academia, research or experience, the reality is that something must be wrong at some level in the thought equation, or the result would be different.

When we change our state of mind, solutions "magically" appear seemingly out of no where. A mind in a state of stress will create thoughts that are incapable of a solution. We are not just our thoughts. Our thoughts are tools for us to use, but not who we are. Our brains are thought machines that can often prevent us from seeing reality as it is, as opposed to how we are experiencing it. Using OCD as an example. Anyone that has recovered from this type of behavior knows that the more we resist something that is perceived as stressful, the more we will try to out think the stressor. The harder we will try to create a solution to the stress. The faster the thoughts become as the stressor grows through resisting it or avoiding it. The remedy? Either remove the stressor, take a medication that dampens the stressor or create a solution (process) the stressor.

Obviously the rabbit hole of what a stressor actually is to a person is highly individual, but worthy to explore nonetheless as thats exactly how people routinely recover from this illness. We pace with precision. We do it long enough for the body to rea;x enough to begin healing. This same approach works in all forms of injury or trauma to the body Let's take a lower back injury for example. The QL can be inseams for a long time before we are aware that disregulation is occurring. Many other muscles will compensate to correct or mitigate the problem. After the stressor to the QL (lets say poor posture, lifting things poorly, surfing to long) remains for too long, the body will tighten to prevent further injury. Only now would we feel back pain, even though the injury may have started months earlier. Think of it was the body is self splinting as if the injury was a broken bone. The body naturally immobilizes us from doing further damage. Yes there are things we can do to shorten the duration of recovery, but we must rest the system or recovery will not happen. Now, after a few weeks, we may feel better, so we start resuming normal activity only to again, hurt our lower back. Even though our pain had resolved, we were not out of the woods because our body has not yet recovered enough to feel safe and relax to allow complete healing. This can go on for years if we dont essentially "give up" on trying to use our back for whatever purpose in continuing to hurt it. In some cases, it takes 2 years of recovery while not re injuring it. After ward it can be injured easily for several more years although if minor, those smaller injuries will heal much faster than the initial few.

This is the exactly what many people who build recoveries experience.

So what did we do?

Acceptance of reality and thus our situation. We couldn't recover while simultaneously resisting our situation. This is a law of nature that cannot be overcome. You can observe this in any system in nature. Electricity is an easy example I can think of.

Strict adherence to pacing for as long as it takes. Just like with any muscular injury, if we keep aggravating it, it will not heal and in many cases will get much worse. Pacing teaches what a stressor is and how to recognize them

Stimulants. Avoid at all cost. They dont add energy, they mobilize it from within our bodies. Essentially taking from peter to pay paul. Anything that doesn't relax you is a stimulant. This means people, food, the internet, our phones, our situation, our childhood, our relationships. Over time with adherence to pacing, we can learn what are the important stressors that have contributed to our fight or flight system being chronically engaged to the point of exhaustion. We can then do something different.

Pacing to calm the body enough to allow it to repair itself is a low risk/high reward scenario that is free and explained and practiced by all eastern philosophies. Philosophies that have been around for thousands of years at least. Pacing also teaches many other things as we evolve through it. Things that are lengthy to discuss here. If I told you that cliff jumping was the most rewarding thing you could ever do...just go do it and ask questions later, you would probably die trying. If someone says, "trust me, learn to pace" there is no failure risk. If you do you learn something. If you dont, the cost of not learning is the state that you are currently in, so there is no risk to trying it.


We dont need bio markers to tell us how we feel. This is known though cultivation of the intuition. Pacing will teach what needs to be taught.
 

Issie

Well-Known Member
@Larry, all good advice and I do agree our perception is a huge KEY to our results. The way we look at things and manage our thoughts are a huge part of who we are and what we will become.

However, until someone can really "tune in", and get that "intuition " needed.....they will search for a bandaid. And there may be some that can be applied until someone is to the place of "acceptance ". I've had to do some amount of soul searching, research, experiments and collecting of knowledge to realize we may only get a "Bandaid". I do not think there will be a magic pill and I don't think science will completely reveal the "CORE" problems as they are looking more at symptoms.

I'm not sure many will get to the level you speak of or will not look to science and search for magic pills. (Which I agree, won't be found for the masses...as we are all so different with different causes and very complex.) But I do think we can find a "Purple Bandaid" that will ease some of the pain and suffering.

Thanks for contributing. I'd like to hear more of your thoughts. Please PM me.

Issie
 

Larry

Member
@Larry, all good advice and I do agree our perception is a huge KEY to our results. The way we look at things and manage our thoughts are a huge part of who we are and what we will become.

However, until someone can really "tune in", and get that "intuition " needed.....they will search for a bandaid. And there may be some that can be applied until someone is to the place of "acceptance ". I've had to do some amount of soul searching, research, experiments and collecting of knowledge to realize we may only get a "Bandaid". I do not think there will be a magic pill and I don't think science will completely reveal the "CORE" problems as they are looking more at symptoms.

I'm not sure many will get to the level you speak of or will not look to science and search for magic pills. (Which I agree, won't be found for the masses...as we are all so different with different causes and very complex.) But I do think we can find a "Purple Bandaid" that will ease some of the pain and suffering.

Thanks for contributing. I'd like to hear more of your thoughts. Please PM me.

Issie
Funny thing about the word "suffering". Not that I would have been able to accept this during the worst of illness, but after much recovered time I would suggest you investigate the nature of suffering. It's literally one of things I was referring to when I mentioned pacing will teach you things that are too lengthy to discuss here. Pain is real and a part of life. It comes and it goes. When we attach emotional bias to it, our bias creates suffering. This is true for everything in nature. Suffering, is actually a choice. Taking action alleviates suffering. There is always action that can be taken. Pacing teaches this. Pacing shows us that when we feel bad or even feel good, expecting to just run around like normal is not the only answer. That rest or good feeling can be banked for later use at the time and place of our choosing. This is not a skill that people with CFS are good at. Pacing is the Harvard Law of awareness for CFS. Suffering will stop the body from healing, no matter what is wrong with it. As painful or triggering as it may be, looking directly at why we suffer or are triggered is also looking at why we remain ill. Again, strict adherence to pacing forces awareness of these principals. Just like in any chronic injury, once the body is in a feedback loop, it tends to stay there to keep us safe. This is true for both positive and negative loops. We can rewrite feedback loops inner bodies. They are not permanent.
 

Issie

Well-Known Member
Dejurgen is going to Love this comment. You sound like him talking. He so believes in pacing. Making yourself do it is the hard thing.
 

dejurgen

Well-Known Member
Strict adherence to pacing for as long as it takes. Just like with any muscular injury, if we keep aggravating it, it will not heal and in many cases will get much worse. Pacing teaches what a stressor is and how to recognize them
We can rewrite feedback loops inner bodies.
Dejurgen is going to Love this comment. You sound like him talking. He so believes in pacing. Making yourself do it is the hard thing.
I indeed believe pacing is a very important and essential thing in ME. But for most ME patients it is absolutely insufficient to return to any decent amount of health. Often, very strict pacing only allows a patient to keep at a very basic level of functioning (and quality of life) compared to further deteriorate without it.

When I was at worst, I more then once was unable to remember my own name, how much I tried. When reading ten lines of plain text, I barely had a clue of what I just had read. When trying to read a quarter of a page, letters danced all around the page. A few more sentences literally gave me tunnel vision. I had a total "exercising capacity" to walk less then 70 meters a day. That is from the bedroom to the toilet, from the kitchen to the living room... all in chunks of no more then 5 meters at a single time at excruciating pain, agony, exhaustion beyond words and all of it being total hell.

When going from the kitchen to the living room I had to consider if I would need to go to the toilet within the first two hours as doing this quickly after this massive effort would be impossible. I had to plan my way to the toilet in trajectories with stops of an hour in between. So I first had to get back from the living room to the kitchen, rest an hour and then continue my "journey" to the toilet. Remember I had to have the energy to travel back to another room after going to the toilet if I didn't wanted to stay and sit on it for another hour!

Just as much as a severe ME patient can afford far far less physical activity and mental activity then a healthy person, an ME patient can only afford far far less emotional stress just as well. And any severe ME patient is unable to have much emotional stress as the brain collapses when it reaches nothing but a fraction of what a healthy person can handle, making it IMO physically impossible to be in effect a severe case ME patient and have high levels of emotional stress. The brain just will (have to) self limit here.

So yes, in some cases very strict pacing and effectively dealing with emotional stress can slowly lead to (a lot) better health. But there are plenty of physical stressors beside that. Me having a severe case of fructose intolerance or Issie having more then her share of energy related genetic problems is not something that can be paced or meditated away.

That can only decrease that part of the burden to the body. For some, that may leave enough reserves to slowly start self healing and breaking the vicious circle. For plenty, even the best possible practices here will not suffice and then trying to find the role of other (physical) stressors and trying to reduce them is vital to break the vicious circle. For them it is not pacing and meditating versus reducing physical stressors but a fine tuned use of both of them.
 

Larry

Member
I appreciate your thoughts and experiences in this situation.

The reality that I have experienced as well as the thousands upon thousands of other people that have healed, is that all of the things experienced are downstream effects of a dis regulated central nervous system response. Just like a traumatic muscle injury cannot take impacts for a long long time, a central nervous system that has been taking impacts to the peiutbn of exhaustion will not be able to take even the smallest of impacts until it can safely heal. Strict adherence to pacing teaches this. One thing will teach the next thing..which leads to the next thing. Waiting to put all the puzzle pieces together before embarking on a journey does not work. Starting a yogic practice that teaches the awareness of sensation and how to stay with it as it is felt in the body (not the mind) for example, will lead to awareness of other things....like emotion for example. Sensation is the precursor to emotion. Awareness of emotion will lead to awareness of tension in the body. Awareness of tension in the body will lead to what causes that tension. Awareness of what causes tension in your specific body will lead to questioning why that thing causes tension. This keeps going on and on. Eventually you become aware of where your energy is being wasted. Its a self guided paint by numbers process that we cannot outsource. The road must be walked.

Eventually as we progress through these different levels of awareness, we are able to look back and see where others are stuck or have yet to achieve. At this point we can become aware of concepts like "story gap" and the power they have free up tremendous amounts of energy to heal.

None of this is exclusive to ME. Most people have no idea how much energy they leak until they are run into a wall like we have. Pain is always a valid message. The message however, is not as simple as we originally may think. At this point in my evolution, when I experience pain, I ask "what is my pain teacher here to tell me?" There will always be an answer. Pain is a message, a part of life. Suffering on the other hand is always a choice.

Once we are able to heal, we begin to see that many people have faced similar health situations throughout history and that they have clearly defined ways in which we too can heal.
Pacing puts us on the path to uncover all of this if we stick with it and pay attention.

It's your choice what you choose to believe. I decided that I would only pay attention to those that knew more than me and were successful in correcting their body and mind. I receached out to them. I payed them. I learned form them. I was then successful.

If you buy a red truck, all of a sudden you see red trucks everywhere. If you are ill, you will see reasons that you're ill everywhere. When you recover, you will see all of things you could not see while ill. This is true for everyone....everywhere.

There is much to know about healing that cannot be put into a pill or procedure. Nature does not let things linger. Systems self correct or self extinguish rapidly. If we are lucky enough to not extinguish rapidly, then there is a reason. Always ask questions. Always be curious as to where you might be wrong. Ask questions outside of your familiar places. Pay attention to those who have succeed where you have not.
 

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