Patient experience with PeaPure for neuropathy in sarcoidosis

From a patient suffering from sarcoidosis (and dystrophy!) blog from Australia; selected quotes from the real world….

The start via the newsletter of the Sudeck Dystrophy Newsletter

Had started a discussion here a couple weeks earlier after reading about palmitoylethanolamide. It is sold in the US as PeaPure and in several other countries. I learned about PeaPure/palmitoylethanolamide via a newsletter (RSDSA) for help with pain and inflammation and even some depression. I have both, RSD (a neuropahty) and also sarcoidosis which happens to be in active flare right now after three years of quiet. I read this article and about PEA and decided to pay attention to this as I had never known of it before. Research started, I started that additional discussion, and it really took off from there.

It is said in much research that PEA has been used for nerve pain and inflammation for the following: MS, RA, ulcerative collitis, back pain, sciatic pain, RSD, sarcoidosis, fibromyalgia, endometriosos, muscle spasms/ nerve involvement, chronic headaches, and the list goes on. It is noted to have no side effects, no drug interactions and can be taken with other medications. Other areas it seemed PEA helped with were fatigue and sleep cycle and depression.

The other discussion here on Inspire was titled: PeaPure For Pain

Nine days ago I started taking PEA. To my knowledge only one pharmacy in the US carries it, it is pure (no additives) and comes directly from the manufacturer in the Netherlands. Since I have a neuropathy/RSD and sarc (sarcoidosis), the more I read the more I thought this just cant be so. But, the more several of us dove into it, the better it all seemed to get.

In my nine days of taking PEA this is what I noticed so far:

reduction in nerve pain in feet/ankles/legs (this was a real challenge for me).

Since I am in active sarc, my sweating came back and it was hard to cool down, especially at night. I now seem to be more on the “chilly” side of things with limited sweats at night. My energy is better, I do concentrate better. Maybe by just having less pain and inflammation. My moods are better or more even keeled. (amazing what pain and inflammation put you through). My sciatic hip pain is reduced or seems to be quiet.. not there for long periods of time or much less noticeable. Currently am taking 800mg at night before bed. The recommended dose of PEA is 1200mg and can be split throughout the day. I started lower to see where it takes me.
My sleep cycle is more consistent. One night I slept 7 hours straight w/o waking up or fussing around trying to get comfy. That NEVER happens. My right side pressure from sarc is better. I don’t seem to get as worn out as the day goes on. This was really noticeable in my breathing before PEA as I battled much pain and inflammation and would become very fatigued as the day wore on. Breathing is more calm and regular much further into the day.

——— Days later

It’s only my opinion, but I think PEA has given me up to 40% improvement overall. But some days it’s only 20%. Does it “fix” everything? No. I think you can have up and down days of course even on PEA. But it seems to keep things more inline. More…(argh! what’s my word here) even keeled. That’s two words, ha.

PEA gives me better feeling days, but not 100% of the time. Swore I wasn’t going to get into percentages yet as it’s been less than two weeks trying PEA. But feel pretty okay throwing that much out there. Will this even out? Just don’t know yet.Am I satisfied that I bought and tried it at this point? Yup.

————Days later

It was reading about the pain control… but also the help with inflammation that helped me to decide to begin PEA. You are so right, pain and inflammation ravish the body. Think my body has been ravished enough. All the treatments, all the meds, all the docs, all that money… ugh. Even if I didn’t get the pain results with PEA I had hoped for before taking it, I still wanted to see if the inflammation would subside both with RSD and with sarc, curving the damage without worrying about tummy ulcers coming back like the NSAIDS gave me. So far so good. Forward ho! 🙂

————–Days later

Patient suffering from migraine:

Yes, Leslie, less migraines. It’s been 9 days without a migraine. If I get to 2 weeks it will break a record for me. I’m absolutely sleeping better at night, especially when I switched to taking 2 of the PeaPure before I go to bed like you had mentioned. I used to wake up after falling asleep, I’m not doing that, sleeping a solid 5 or 6 hours at night without interruption. Less pain has been great but I also feel more emotionally well balanced, less stressed.

—————Days later

Thanks for asking questions about PEA. I don’t always know what to write about it without sounding redundant. Stayed kind of quiet about PEA lately just to give it more time to see what does or does not happen. But then again you are right, have been on the quiet side…..And after giving a bit of thought to that the only thing that really comes to mind as a good answer is this: I have less pain. With having less pain I have actually been reading other things, doing other things and have not been on Inspire that much I guess. I come read posts, new discussions … but feel if I don’t have something to add to it or if I don’t have a question..then I don’t usually post. Here’s a funny thing – been doing a lot of reading on current events and politics, around the US and worldwide. Something that just didn’t hold much of my interest before. Its an experience realizing the things I didn’t do or stopped doing – as my life was revolving around illness of some sort over the last 12 years.

Yes… there is that calmness, its like a sense of balance restored. It is not as strong as it was the first week of taking PEA but it is there. Or maybe I got used to it a bit? With the pain down, the pins and needles feeling dong better in my legs/feet, the inflammation on my right side from sarc being better, more alertness with less fatigue (not going to guess this one, its either the PEA or its the freedom of less pain/inflammation freeing up my brain)

There is this natural occurrence happening to wander off and do more things that I just had stopped doing, or at least not doing as much. I am a bit hesitant to say that because I do still have pain and sure, I feel the RSD/dystrophy and sarc are still there, I am in no way disease free. And I dont want to be misleading at all. But.. in all truthfulness a bit of my life has come back to me that I just didnt have before.

This has been good in one way, and not good in another. You see I am up typing at 2:30 in the morning. I had a nap today. A really good nap. Before PEA I never really could take a nap, and by the end of the day I was exhausted. So, I am wide awake now when I should be sleeping. New energy, or new balance and I seem to not have my routine down yet. This will screw me up tomorrow morning, and I know myself well enough that I cant let this routine start or my sleep cycle will change. But I sure enjoyed the nap :))

On Thursday I was really agressive with my walking and walked a lot in summer shoes with a cushion/wedge sole for comfort. Normally that would be a big no no for me (extra walking, different shoes combination). Before PEA my neuropathy would not let me do that without quite a bit of consequence of pain/spasms, etc. lasting who knows how long, sometimes hours, sometimes days. In other words – if I got out of my standard physical routine my brain/neuropathy would not like that and I would flare up. This is why I take 800mg of PEA at bedtime, not just for sleep cycle but in hopes of getting the most “relief” or “time out” possible for legs/feet which in turn gives me less pain and more stamina the next day. Its working. The next day I didn’t know what to expect. When I woke up and got up and about, there was still the same reduction in pain, still the same reduction in the pins and needles feeling. The one thing that was really noticeable was how very very stiff my feet/legs were, with a slight increase in spasms in my ankles. But normally that would also have all the nerve pain and bad spasms from walking that much along with it. But that was not there. The stiffness was bad and is just today fading back to more normal, but.. I didnt suffer! Four things changed: 1) I was not afraid to increase the walking because I felt more confident in the PEA to hold the pain down. 2) During the walking the pain did not increase as it would have before using PEA. 3) During walking with pain being held down, I was able to walk for a longer period of time 4) did not have the harsh consequence of a flare after the increased amount of walking time.

Now, before using PEA I would have taken just ONE of those changes anyday/ anytime. To have all four of them is (as you say…) HUGE for me. Its like I am having to discover myself again. How much more can I do now with taking PEA than before? I sure dont know yet. I am becoming more brave but I also understand I am not cured, I still need to be careful. The funny thing is now that I have gotten even one inch away from that pain, and enough time has passed now taking the PEA, I actually forget about pain sometimes and I dont want to go backwards. Not even an inch closer. I dont want to do something dumb with a false sense of security and end up in a bad flare. That brings stress and that brings sarc on. On the other hand, I need to figure out where the limits are. Its a bit of a challenge. I just have to stay patient and go slow even if I dont think I need to.

In general just to put it in an easier way – I would say at times my overall pain/discomfort/inflammation/sweating/anxiousness/depression (ack!) has improved 45-50% Thats the high side. I still have highs and lows with it all. One day its that, the next day its at 30% because the barametric pressure is high due to a storm coming in. Thats typical RSD/neuropathy. Everything and anything can make a difference. Nope, its not a cure – I still feel pain and discomfort but I am not “suffering” like I could so easily do before. Pain does increase if I push not taking PEA on time or accidentally skip a dose, I sure notice it. But – and this is also a huge thing – my quality of life is better. 🙂 Its fun being interested in things I couldn’t concentrate on long enough before or just didn’t feel up to it. I feel I am catching up to a bit of life I had lost. I cant help but feel I have a little more freedom. Grace, to answer your question, I think I have been on a little bit of a “mental” holiday :))

Watched the movie The Dallas Buyer Club this weekend. I highly recommend watching that movie a I really think it is Matthew McConnaghey (sp?) best work to date. Based on a true story of a man living here in Texas in the mid 1980’s who found himself diagnosed with AIDS and what happens, how he fought to be on supplements,etc. Wont say anything else, just watch what the FDA did with his supplements. Bring a tad of fear to mind that some how the FDA will find out about PEA and .. take it away? Make it too expensive to get? Interesting.

—————days later

Even on PEA as I describe above, I still have the wax and wane. Its just not as extreme as it was. In the case of my sciatic hip nerve pain, it has been the most resistant at times, but other times it does go away. It takes time to build up so its important to stay on course which can take a couple months. Even though I have had better results than anticipated with the neuropathic pain, it is working on inflammation, but that takes more time as I understand in reading all trials and reviews and reports. Yes, it is like putting myself through my own trials and thats why I document. There are days the pain relief maybe 25-30% and other days maybe up to 50%. If I do not take PEA as scheduled, I sure can feel the pins and needles, pain start to increase. If I push or overdo my activity… it does tend to hold pain down longer, but I still have my limits. No, its not a cure. And a mentioned some folks that try it will be non-responders. I also have permanent structural damage to my feet and lower legs, I know it will not fix that, but getting pain/inflammation down hopefully will keep additional damage down.

DJ: Yes, it is a supplement so no prescription required. I was alerted to PEA by my other support group (not sarc) called RSDSA (reflex sympathetic dystrophy syndrome of America) a I have had RSD x 12 years. They never put a treatment on the front page of the newsletter. They never suggest one treatment or med over another. So to see an article on PEA for neuropathic pain is why I dove into learning about it.

Research

Worldwide there is a ton of research, trails, etc… many posted here, but there is a lot more out there. Because this has helped many other diseases with pain/inflammation, etc. like RA and MS that was encouraging. It was clear to me that just because the US was not on top of the use of PEA did not mean many areas of the world had not already been using it for quite a while now. Italy even just came out with thier own version of PeaPure. It is sold in different countries under their own manufacturing names. And its not just all the info on PEA that interested me, its also the research on the glia cells, the involvement with nerves (they used to think glia was just a hunk of glu sitting there doing nothing, but now know how it is needed to protect against pain and inflammation right at the nerve site) and what was going on there and their findings.

I have to admit, why the pain docs in the US are not up to date on the glia research and studies and the help it has shown to give patients in pain, I do not understand. Thank goodness we have a great national association, the RSDSA that does a lot of research for us worldwide and puts it in a newsletter. PEA is not new. Its just new to me 🙂 I don’t look at PEA as a medication at all but rather rebuilding up my natural glia that we seem to either not have enough of or it is depleted in the pain/inflammation process of disease.

Sarc symptoms

The sarc symptoms I have are: limited SOB, right side ribcage pressure, inflammation (slight at the time) of lymph nodes.. oh, I forgot to say.. my lymph nodes are down, but even tho I am in active sarc flare I cant say yet if it is due to PEA or not. Just dont know. My SOB is slightly better, I never had skin issues with sarc nor eye issues, so sorry I cant be of help there. Because I tackle RSD and sarc at the same time – meds for sarc can have a bad reaction with my RSD. Its a tricky case to juggle. Because of that reason, and that my sarc had been quiet for 3 years until recently, I had not been and am currently on zero sarc meds. I do use an inhaler in the morning, which I still use. But if I could suggest anything, after using the inhaler – there is more mucus released than before using PEA. I am due a CT scan again in the next few months. That will give me time to build up the PEA and will be interesting to physically see if any or what changes really have occurred as I have a new granuloma in the upper left lobe, and a 12mm retrocardiac pulmonary mass that we have been watching.

Still cant say if the energy increase is PEA itself, or the reduction of pain is naturally increasing my energy – or both. I can say that getting up, not having the worry of pain on my mind first thing in the morning has been nice. I can do more during the day for longer periods of time, but I still have limits where my legs/feet need rest. Do I believe that even taking PEA – that I could over do it and push myself right back to the incredible inflammation, pain, pins and needs feeling and even cause a flare of my RSD like before? Yes. Taking PEA for me is not like taking a medication. Its different. It feels to me that my body itself is changing. Like it wants to balance out more. That my body is not so interested in throwing all the inflammation and pain my way, but it is more interested in calming it down. There are no side effects. Its not like a medication that way. In the beginning the calm effect I had did feel a bit like a medication, but that evened out after a couple of days or at lest I dont notice it as much. Thats about the best I can explain it all. lol it takes a lot of thinking and then trying to turn it into words :)) As of the end of this week, it will only be a month on PEA.

—————days later

Symptoms of sarc and PEA

My feet / ankles / legs feel pretty good this morning. Honestly folks, I do not have any more words than what I already described for this… When I take PeaPure, there is a slight sensation I notice in my entire body for a bit, once in a while. I think I can actually “feel” the balancing out of the PeaPure working. Not just on painful limbs and joints or on my sweating or sciatic problem, not just as a bit of an antidepressant, its … hard to explain. Have taken tons (tons) of drugs in the last 12 years for RSD and then sarc for the last 6. This I can say that never happened before: when I did run out of PeaPure… I was sad. Of course I did not want to go back to pain, fatigue and sweating and feeling crappy. Taking PeaPure allowed me to not only have more energy and feel better, it allowed my brain to go “back” to thinking better, having more interest in other things I had lost interest in along the way. I want to say I felt much more “human” again, and I guess that is true. More energy (but not a nervous energy like with coffee, etc), more relaxed, more focused, less pain, etc. but here is the thing… when I ran out and got sad I did, I kind of felt “hooked” on it. Is that the right word??

I know it was not a physical addiction per se, no side effects … just the old symptoms and pain I had always had. But my mind wanted to revolt in the fact I was going backwards. My mind, my brain, my body… my emotions… said oh, hell no! Its like being a slave and finding a bit of fresh air and freedom. Maybe thats what the “addiction” was about. I just don’t have another word to call it. When the bad pain an pins and needles came back in my lower extremities, I actually got pissed off because I knew there was a way to lessen this. I did not feel comfortable having that struggle. It wasn’t a huge struggle because even tho I had reduced the dosage to spread it out, and then ran out… it still held me to a point, so I guess I never really did get back to pre PeaPure symptoms.

——————–days later

Now, I can have pretty bad sciatic nerve pain. In both hips from the RSD strain. They never hit at the same time thank goodness, but it seems (and this was strange to me) that the sciatic pain took much longer to respond to PeaPure than the neuropathic pain in lower extremities. I dont think the sciatic is caused by neuropathic pain but rather its a structural issue due to how I walk with RSD in my lower extremities. (more like a direct nerve injury pain than neuropathic pain) AND… as luck would have it, when I didnt have PeaPure for those couple of days I ran into some bad sciatic nerve pain in right hip. It was fierce. They say that maybe you do not realize how much the PEA is helping UNTIL you dont take it.

It wasn’t easy to abate the sciatic nerve pain flare ups with PEA, but I realize how much the PEA had helped after I ran out of PEA. (thank goodness I do keep topical DMSO here for that, it worked great for that bad sciatic flare after two days of applying)

——————days later

I have ordered 3 boxes of the PEA that were shipped on the 20th. They are to be delivered today. So possibly it’s the larger orders that get held up? I don’t know. It might just be luck. Because I’m using 2 new things to prevent migraines I haven’t been sure on what is working. Now that I hadn’t taken the PEA it’s possible it is helping because the last 2 days I woke up with a migraine. I use my Celfaly (for migraine prevention) every night. I know it helps and at times gets rid of a migraine in progress. Yesterday I used the Cefaly again in the morning, it did not take the migraine away and I took Sumatriptan. This morning, another migraine, used the Cefaly, the migraine is almost completely gone. So my unscientific opinion is is that they both are working.

——————–days later

Morning Bonnie: Well, thats two good news right there x2. When I ran out of PeaPure and the sciatic and neuropathic pain in legs/feet came back over a few days, I actually was surprised to feel how bad it was. What I had been putting up with. So very glad your shipment will be to you today!

Its only my gut feeling, but over at PJ’s in San Diego, somethings wrong over there. Lets say the FDA did hold up that last shipment, its been a month or more now. Somethings not right.

—————————days later

Reaction Internist on PEA

Yesterday I had an appointment with my Internist, who is also my GP. Have been with him 4 years and I even know his Mom. He is really interested in my case, having both RSD and sarcoidosis. It was our first talk about PeaPure and PEA and he was very interested. He scanned all the info I brought about PeaPure/Pea into my file. (He also scanned all the info about sarc and vitamin d dysregulation into my file). Its nice to know it is there. He asked a few questions, the nurse.. went to see if anything was in their database on PEA (their database/puter system/is the same system as our local hospital) nothing there. Now there is 🙂 Dr. Z took the hard copy info I brought and is going to talk to some other docs about it, maybe there is a way to get it here locally. He is okay with me taking PeaPure/PEA and was happy it is helping. He had zero problems with it and his help to possibly bring it local is great.

Next week I see a new rheumatologist in the area – for sarc and RSD. Will keep you in the loop as to how she is with the PEA and sarc, etc. So far my pulmo and internist were fine with PEA, I expect her to be as well.

————————-

RSD Flare 05/31/14  Right foot reflective of all extremities

RSD Flare Right Foot after DMSO and PeaPure in all extremitiesHere are two photos. One while all this RSD flare was going on, one this morning at 7am. I never did hit the ceiling with horrendous neuropathic nerve pain. It was painful, yes…it was, no doubt. BUT.. compared to what it should have been? This is amazing and .. I think I am still in awe over this. It is the first time I am able to actually not only document with words, but show with pictures. I posted these two pics in an RSD support group.. we are all in disbelief I think. I have to say that the use of both, the PeaPure for the pain and some inflammation, and the DMSO…. held back that horrific nerve pain. The only other thing I did was to take Motrin for inflammation. I have no opioids, no pain meds, etc.. to even take due to the ulcers they give me.

In addition to the pics I showed, here is a new article sent email to me today on PeaPure. Since this is becoming an old discussion, I may close it soon and start fresh. Thanks everyone for your interest and help … all I know is if PeaPure can do this for RSD.. I do have good hope it also is working on my poor inflamed sarc lungs. Oh, and by the way – with new labs done this week, my 1,25 d that was very high.. is now in the mid-normal range. My cholesterol has come down 30 points in two months, no diet changes, no med change nor dosage change. I dunno folks, all I can say is what is going on. Thanks everyone!!

—————-End of sharing

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