Relapse of pain after stopping PEA: Ehlers-Danlos patient experience and PEA discussions

In the Netherlands we have seen remarkable good effects of PeaPure in Ehlers-Danlos. Apparently this is the same in the USA, and we share a whole thread from a blog on PeaPure in Ehlers-Danlos:

From an USA blog, by members of the Ehlers-Danlos National Foundation Support Community

My husband uses it (PeaPure). It’s quite helpful when you have neuropathy. I don’t know how it works with other pains.
Here is another link: https://palmitoylethanolamide4pain.com/about-2/
I advice you to seek medical advice first. Not because of any dangerous side effects (but that is my opinion and I am not a doctor!) ) but to get advice about the right dosage. It would be a waste of time and money if you take too much or not enough. There is also a cream. The effects differ with each person. Sometimes it works within days, sometimes it takes weeks or months. If you don’t feel any positive effects after 2 months you better stop. They advice to start with 3 capsules PEA a day (1200 mg) e.g. 2 in the morning and one in the evening – if necessary you can go up to 6. If it works, you use that dosage for another month. After that you lower the dosage to a level where you still can feel the effects.

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To answer your question: My husband stops taking the PEA Pure sometimes for several reasons: being fed up with taking pills ( I call that his denial phase, ha) or when he is in doubt if PEA still works because he is in more (nerve)pain. His feet burn and he is experiencing numbness in his toes. But after a while he always goes back on PEA Pure.

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Thank you. When you mentioned PEA and your husband’s neuropathy, I Googled palmitoylethanolamide and myelin. Here’s the link:

http://www.ncbi.nlm.nih.gov/pubmed/22229320

Very, very interesting. Apparently, the myelin is somewhat repaired. Amazing.

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Indeed. Sometimes my husband stops at times when he doesn’t feel any effect anymore. But then after two or three weeks the symptoms worsen.

Especially this part in your link is interesting: Although a placebo effect might play a role in the reported pain relief, the changes in neurophysiological measures indicate that PEA exerted a positive action on myelinated fibre groups. PEA, possibly by moderating mast cell hyperactivity, relieved conduction blocks secondary to endoneural edema. In a severe condition such as painful neuropathy associated with multiple myeloma and chemotherapy, a safe substance such as PEA provides significant restoration of nerve function.

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I showed PEA Pure to my chronic pain doctor. he did some research, was impressed with what he read and said i should try it. I started taking it 2 weeks ago and the biggest thing i have noticed is that i have been sleeping better than i have in the last year. I haven’t had gut issues or any side effects.

i am happy with it so far.

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Bear with me as I put together my research on pain, peripheral neuropathy and EDS and the healthy connection/repair of PEA.

In2014, Marco Castori wrote another paper on EDS underscoring the prominent involvement of the nervous system and the frequency of pain in this syndrome. It was called “Neurological Manifestations of Ehlers Danlos”. He wrote: “The pathophysiological mechanism of peripheral neuropathy in EDS-HT seems related to the dislocations and subluxations due to ligament and capsular laxity which cause abnormal stretching of or pressure on peripheral nerves and thus can result in neuropathy or plexopathy. Increased vulnerability of peripheral nerves to stretching or pressure directly linked to the underlying to the underlying defect…”

My thinking on this, and I am not expert, is that maybe the myelin sheath is being affected in EDS. The myelin sheath is the fatty covering that wraps around and protects nerve fibers of the peripheral nerves. When I looked up just to of the items in PEA – peanuts and eggs – I found that just these two foods alone contain two very important ingredients. Peanuts are high in fatty acids and protein; so they contain two very important components for the protection and repair of the nerve sheath. Eggs contain vitamin B12 among other vitamins & minerals. Now vitamin B12 is absolutely essential for the production of nerve fibers. So I am thinking PEA sounds pretty good for pain & repair.

I have included a link here to EDSer Donna Williams who speaks of her neuropathy. She also includes descriptions and a color diagram of a nerve. http://blog.donnawilliams.net/2013/11/26/peripheral-polyneuropathy-and-ehle rs-danlos-syndrome/

I thought all this info was very interesting.

Glad this thread was put. Thanks, mom2zebra, for sharing with us about PEA.

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So I am still studying PEA Pure. I realize it is a compound made up from extracts. There is no patent required on it so the pharmaceutical companies cannot really compete for profit. It was sold OTC and had quite a good reputation. The FDA recently banned it but I can’t find out why except that it looks like this decision might benefit drug companies. I did note that nursing mothers and people with liver problems should not take it. I am pasting an interesting narrative written by a former medical professional who lives in chronic pain. It is a little long. All I can say is to all those who do try it, please post and let us know more of your experiences. I am very interested.

“OK, let me provide further information on PEA. It is not a new drug.
As I said, it is being used in Europe with great success, and has been used in the holistic health underground for over 30 years as far as I know from personal experience, but is relatively unknown to the US mainstream medical community.
PEA (palmitoylethanolamide) is an endogenous fatty acid, and therefore completely natural. The compound has anti-inflammatory, anti-nociceptive, and anti-convulsant properties. It is a cannabinoid, meaning that it activates one of more of the cannabinoid receptors of the CNS.
Research is available that demonstrates lower levels of PEA in people with chronic pain, certain types of nerve functions improve in its presence, and it improves pain. It also does a whole lot more.

Cynics in the pain community claim that PEA is unavailable here in the US because pharmaceutical companies do not see an adequate return on their investment in bringing PEA to market given our highly restrictive FDA rules requiring a long and expensive product development process, as PEA is currently available from a variety of suppliers). PEA is also available in some strains of MMJ, although the research there is still inconclusive as to which and how much, and so this endogenous substance is caught up in MMJ biases and politics of late.

I’ve known that people in the US have been using PEA dissolved in DMSO for many years as a pain reliever for arthritis (they sold this compound by the gallon down at the corner health food store on the corner of Haight and Masonic Streets in 1980).
I again became aware of a DMSO/PEA solution through my step-mother who suffered from crippling RA. She and my father would travel from New Mexico to Matamoros, Mexico, where she bought big jars of the stuff to treat her arthritis. She claimed that it using this stuff worked better than methotrexate for reducing inflammation and helping her hand and knee pain, and had none of the nasty side-effects of this drug.

I can’t vouch for this substance and would never recommend it, but there is plenty of clinical and scientific research available on its effectiveness.

For more information, the Wikipaedia article on PEA is full of scientific sources and I find it difficult to read.

https://en.wikipedia.org/wiki/Palmitoylethanolamide

However, use the references at the bottom of the page.

For more comprehensive information on the use of PEA in therapeutics, see this NIH PMC ‘full-text’ paper:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

That’s it for me. Good luck.

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