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Buddhism & CFS

Discussion in 'Spirituality and ME/CFS' started by starryeyes, Dec 7, 2009.

  1. starryeyes

    starryeyes Senior Member

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    Ah that reminds me of the question, Does this path have a heart? ~ Thich

    I was thinking about something else Thich Nhat Hanh says. He talks about what happens when intense negative emotions visit you. He says to invite them in and say, Hello Fear, come in.. sit down. How are you? because it's going to anyway but this way you're inviting it in. You're welcoming it and paying attention to it. You can do the same with Loneliness, Sadness etc... He says it's like greeting an old friend.

    This still works for me. :) I wanted to share it with all of you because maybe it will work for others here as well. This doesn't work for chronic pain though.
  2. Koan

    Koan Be the change.

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    :( I'm sure you looked and looked and looked again for some tweak of the Dharma which helps.

    Can't imagine. Seriously. Can't.

    Tee, is any of your pain in a location where you can get at it with topical capsaicin? I used to have trigeminal neuralgia but I keep the trigeminal nerve depleted of substance P, necessary for transmission of pain, so no pain. It might be worth investigating. There are many studies online re capsaicin and many different neuralgias.

    Maybe?
  3. Koan

    Koan Be the change.

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  4. starryeyes

    starryeyes Senior Member

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    Thanks Koan, topical capsaicin can work really well especially for people who have muscle pain from working out but it burns my skin.

    Actually, I use Lidocaine Patches, DMSO cream, Magnesium Oil spray, Fibro Pain Spray and Biofreeze, although the latter sometimes freezes me out.

    These products work well on some kinds of pain for awhile. My problem is I have so many different kinds of pain and I can't handle taking any pain meds. I am grateful for these products as they do help alleviate some of it for a time.

    You're so thoughtful to care. Thank You. :)

    tee
  5. Koan

    Koan Be the change.

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    Hi Tee,

    Capsaicin is most useful, not for muscle pain but, for nerve pain.

    This study is all about neuropathic pain - diabetic neuropathy, post shingles pain, trigeminal neuralgia, etc. It works on neuropathic pain which does not respond to most analgesics even if one can take them. It depletes the nerve of substance P which is necessary for transmitting pain.

    I took tegretol, then neurontin for years until each stopped working or caused really troubling side effects. Capsaicin has been working for me for about 6 years now.

    If there is any chance you could slowly build tolerance to the burning sensation you might want to check out the studies.

    Ok, I'll shut up about hot peppers now.

    :D
  6. starryeyes

    starryeyes Senior Member

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    I didn't know capsaicin helped with nerve pain. That's neat. Well, I get like major nerve pain too. For instance the center of my thigh will throb for days and I'm sure it's nerve pain. It turns ON then off then ON then off. It takes a few hours at least for Lidocaine patches to finally reach this pain. Sometimes many hours if not a day but eventually the Lidocaine builds up and reaches the center of my thigh and the throbbing finally stops. As long as I change the Lidocaine patches over the next few days they will keep the pain at bay. If I don't change them then it comes back with a vengeance.

    Do you mean that kind of nerve pain and do you think capsaicin would help it? Or do you mean like shooting pains in your fingers or arms?

    I'm very glad to hear it helps you so much. I can't handle the burning at all but it doesn't always happen. I may give it a try again and see.
  7. Marylib

    Marylib Senior Member

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    Those hot peppers

    Wonderful advice.

    I just now figured out that the pain down my leg and the pain in my face was neuropathic pain...I thought I was just being tortured by the devil :rolleyes:

    For some reason now (perhaps the isoprinosine) it has abated, but if it comes back, I will definitely try the peppers!
  8. Dr. Yes

    Dr. Yes Shame on You

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    I love you folks! There are so many things I want to respond to - Brenda about Christian belief, gracenote about a new kind of advocacy she proposed a while back, etc etc not to mention Buddhism! - but I don't want to jam up this thread ... (Maybe we should break this thread into 'subsets' heh heh.) I'll try to keep my excited rambling to a minimum, limit the topics and also not put 'em all into one colossal post. (Btw, teejkay, I'm really sorry about the long paragraphs..I know very well how it feels to look at big blocks of text; thanks for reminding me!:eek:)

    To-tally fascinating, Fresh eyes. Did Sacks expand on that (the neurology behind it, or the symptoms)? If so, which Sacks book is that from? Thank you so much for telling me; I find it very reassuring too. I only wish it was as specific (and I assume infrequent) for me as migraine aura.

    I'm not sure that mine has ever really gone away entirely; I forget about it often but it always seems to be there at at least a very low level... Whether it's gotten less overall or I've simply learned to tolerate/ ignore it better, I can't say; probably a little of both.

    I try to look at it the same way you and Koan do, as much as possible, though it can be really, really tough to do so. I think it will get easier, however, just having heard from you and Koan...I suppose the more I find out from others who've experienced it, the easier it will be to realize that it isn't some terrible existential thing (or me going crazy, which I thought the first year it really started). Maybe as highly introspective or 'spiritually-minded' people we are more sensitive to this, or more easily traumatized by it. When other PWCs talk about feeling "weird" or "spacey", could they be referring to something like this, but responding differently?

    Again, thank you so much for posting this!
  9. gracenote

    gracenote All shall be well . . .

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    going to the new thread

    Teejkay and Marylib,

    Koan started a new thread earlier today in the Sleep and Pain section called "chronic neuropathic PAIN and topical capsaicin."

    I have questions, too, and would love to continue this discussion over there. Want to join me?
  10. starryeyes

    starryeyes Senior Member

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    Thanks for letting us know gracenote.

    lol Marylib -"I thought I was just being tortured by the devil."


    This seems to fit in here as well. It's a vocabulary quiz that donates rice to people:

    http://www.freerice.com/index.php
  11. Dr. Yes

    Dr. Yes Shame on You

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    Sorry, guys, didn't mean to make this so long!

    Koan, your story is so familiar it's eerie.

    When the whole ME/CFS started in late August '92, I had some odd vertigo and "hyper-acute" visual phenomena, especially during or after exertion...A week or so later while laying in bed at night I was hit very suddenly by a bizarre, powerful experience of whatever Fresh eyes, you, and I have been describing (up til now I've borrowed the term "derealization" or "depersonalization" from a psychiatry, but that's a vague term linked to certain psychiatric disorders...does anyone have a better idea for what we should call it here?)

    I was totally unfamiliar with whatever it was, and although I vividly remember it, words kind of fail to describe it accurately. I definitely felt something that I think you guys would call "existential dread" (btw, could you clarify what you mean by that?, if its not too upsetting). The worst was feeling that when I looked inside myself, instead of finding what I thought of as the inner self or the (usually taken-for-granted) solidity of one's own existence, I felt as if I was (inwardly) looking down into a black void; I could feel the "Nothingness" of it... it was just down to my anchorless thoughts, and that void; nothing else existed and there was no substance to anything.

    I did anything I could to combat this 'feeling', but in the end I think it just went away on it's own after about an hour. Nothing like that happened again from that point until about three years later, though I remained haunted by the experience.

    In '95 it started after I was hospitalized for 10 days while my crazy Infectious Disease doc had everybody on staff run tests on me (I had developed a weird respiratory problem); I got virtually no sleep for those ten days and caught a terrible flu and was being treated with IV antibiotics for Lyme (though my tests were negative). It also turned out at the same time that I had an acute HHV6 infection, as tested by Ablashi at the NIH. Somehow the combination set off the first anxiety attacks I had ever experienced.

    I didn't want anyone to think I was crazy, and was too scared and ashamed to see a psychiatrist. But when I finally did, he diagnosed me with an "iatrogenic" (medically induced) "anxiety reaction with a post-traumatic element". He felt that the hospitalization (which included a full-out CP stress test) was like "Vietnam" especially for someone with CFS, hence the cumulative traumatic effect. He didn't think much of the coinciding HHV6 infection. The 'derealization' that now seemed constant at a low level and acute at others was typical of strong anxiety reactions, he said, though he had no explanation for the first experience three years previous (he thought it unrelated and, like a couple other doctors, blamed it on two GI meds I was taking back then, Reglan and Zantac).

    Whatever...so began a long descent into hell, like Koan had described. I found that the more intense 'derealization' events were set off when I was exposed to too many external stimuli, like watching more than a few minutes of TV, reading too long, or going to an unfamiliar place with too many things to look at or too many noises..Being unusually exhausted or staying up too long could do it too, and any drug with a strong sedative effect (like Trazadone, which I tried just once for sleep) would as well.

    Interesting what you found with Xanax, Koan; for me, Xanax didn't help with the 'derealization', but Ativan (another short-acting benzo) did -- within a short window. I found that if I took it before watching TV or other activities with lots of visual stimulation, I could watch much longer before it acted up. Unfortunately, there was a limit to what Ativan could do, and overtime of course Ativan lost its effectiveness. Also, for me, the benzo doesn't stop the symptom so much as it "anaesthetizes" me to its effects, allowing me not to care about it (I've noticed the same about its effect on anxiety and about antidepressants' effects on depression...they don't get rid of the stuff but they make me unable to care or think about them much).

    Eventually over the years (not through any medicines) the anxiety got much, much less and the 'derealization' or whatever became more manageable for whatever reasons, as I mentioned in a previous post. An intense "episode" hasn't happened in a long time.. though it never feels too far away. But I still feel "disconnected from myself" at a deep level (over the years i've also described different flavors of it as feeling "dislocated", "superficial", or "paper-thin").

    So is it just from an ongoing anxiety disorder, even if it preceded the anxiety at least once? Or is it something from the ME/CFS? Or both? I don't know; I just want it to go away!! I understand perfectly what you said about the fear of it, and trying to avoid it.

    I guess my greatest fear now is that my normal functioning, my feeling of having "depth", will never return due to some sort of neurological damage by a virus or whatever. The idea is chilling, even difficult to write down (and I hope in so doing I don't scare anyone else!), but I do know how amazingly plastic the brain is and how capable it is of re-routing its pathways, and all evidence and my intuition suggest that it's not physical damage but rather a system malfunction. The triggers are too various for it to be a focal, "lesion"-type thing.. And I'm not giving up on the idea of gentle meditation in whatever way works to 'rehabilitate' the brain...but I'll have to tread gently, I guess.

    You have no idea what that means to me, Koan! I was kind of worried when I wrote yesterday that I would as usual be the only one who's had such symptoms, but I guess not.. which is both comforting but also really saddens me, as I hate the thought of any of you suffering this. Great big hugs to you Koan, and to Fresh eyes...unfortunately, I know what you've been through!
  12. Victoria

    Victoria Senior Member

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    My double vision is getting worse?

    Gee, everyone, I thought I had lost the plot this week (while off work) - now I KNOW there really are two threads.

    But I seem to be seeing the same posts in each (sort off).....

    Have my migraine meds drawn me double vision on the forum as well :confused:.

    I only had my eyes checked by the Opthomologist yesterday :eek:

    I DID so want to contribute to this subject while off work, but methinks I'd better go to bed....
  13. Dr. Yes

    Dr. Yes Shame on You

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    Dear Teejkay,

    I wanted to reply to you first but had already written the other reply and also had to look some stuff up about pain relief in CFS before I could post to you. Pain is no longer a significant problem for me, but it was in the first couple years...But you clearly have it on a level beyond mine. I'm so, so sorry that you are going through that.

    I had some info on a couple pain meds and then I noticed that you said you can't take them.. Would a short treatment of Demerol count? I have read and heard from a couple sources that in cases of protracted CFIDS pain as little as a single shot of Demerol relieved pain for up to months later; the guess was that it somehow broke a neurological pain "feedback" loop.

    Two "technological" ideas I read about recently are TENS and biofeedback (which more people are apparently using these days, esp. with some new-fangled EEG techniques). You've probably already researched both of these, but if you are interested let me know and I'll give you whatever I can find on them. [ I was looking into this area again recently because my Mom's been suffering from post-shingles PHN for a year now, which doesn't seem to respond to pain meds.]

    Btw, have you already tried accupuncture? My guess is yes, but had to ask.. I know it's had mixed reviews but I've heard a few cases where it made a major difference..

    ----

    Okay, now it occurs to me I should have put this on the "Pain" thread that gracenote mentioned...sorry, brain gooey. Still wanted to respond to cool stuff you said earlier; I'll see if I can before I turn in for the..day.
  14. fresh_eyes

    fresh_eyes happy to be here

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    Hi Dr Yes! I'm so glad that is relevant to you. For some reason I'd never thought to post about it. Sacks wrote an entire book about migraine (title, yes, Migraine), and he is a sufferer himself. (BTW I LOVE Oliver Sacks, and recommend all his books - I've become very interested in brain science since, ummmm, my brain started malfunctioning!) Anyway I realized reading it that migraines are not at all restricted to what one thinks of. Some people have migraines continuously. Some have auras with no headache. Some have "abdominal migraines". And migraines often end with a spontaneous purge from the body (sweat, mucus, urine, even nosebleeds). Medicine has little understanding of what migraines are exactly, but they think they're related to seizure disorders.

    I started thinking maybe I was having headache-free migraine auras, so I started taking feverfew (migraine preventative) every day. I think it helped, though it's always hard to tell because my symptoms are so erratic anyway.

    And you know, they think lots of mystics over the ages may have had seizure disorders...so perhaps its no coincidence that this comes up among us spiritual types on this thread?? :)

    Thanks for being on the boards, Dr Y. I enjoy your posts.
  15. Dr. Yes

    Dr. Yes Shame on You

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    OK, please forgive all the posts and esp. the brain fondue I'm thinking with right now, but I wanted to reply to a couple things Teejkay said that I loved before I totally crash..

    I remember something I saw on TV once...When asked by a student what he should have learned from his time at the monastery his Buddhist teacher raised his eyebrows and said: "How should I know?"

    Also, Joseph Campbell noted that "the Buddha can't tell you how YOU"RE going to reach enlightenment...No guru or teacher can do that."...
    That's because, of course, we all have different psyches, different thought processes, different personalities, different psychological make-up or issues or what-not; our starting points and obstacles are all different, therefore our paths are going to be very different, and only we can find out how to navigate them; Campbell said a guru can only serve as a lighthouse in the fog, telling you "watch out, there are rocks over there", etc... But for most part you end up finding your own way.

    You know, I hadn't even thought of it that way... I keep assuming (or hoping), I guess, that I haven't changed that much, that it's damage from the illness that is the only problem...Now you've given me a lot to think about!

    I think I've noticed a few "lighthouses" on this thread alone!;)

    Thanks for that, Teejkay
  16. starryeyes

    starryeyes Senior Member

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    I just stumbled into this thread I think I started. I feel like Alice through the Looking Glass.

    As I said earlier in this? thread:
    Boy! Was that prophetic.
  17. Dr. Yes

    Dr. Yes Shame on You

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    I've heard that too, fresh eyes...
    So when the hell do WE get to have visions?? ;)


    Btw - Koan, re: dis-appointments:
    Sure. Oh, and feel free to use "lug-bhug", too....
  18. starryeyes

    starryeyes Senior Member

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    You're welcome and good insights Dr. Yes. That's such a cool name btw.

    Thank you for your empathy too regarding my pain. You all have my empathy regarding the feelings of depersonalization. That's a frightening feeling. Now that I'm in perimenopause I get that at times. What works for me is I tell myself it's just the hormones and my illness and I rely on God to see me through.

    As far as meds go, I can't even try them on a teensy level, I react so badly. Also, I've used different tens units and will do again if my back ever gets really bad again, I had sprained it in 2000 which led to the development of severe FMS. But they really do nothing for me now.

    I did acupuncture for a year and saw 6 different acupuncturists first. I settled in with the best one and went once a week. I would meditate during the sessions to deal with the pain of the needles and it worked very well. In fact twice I had OBEs that were amazing. I did a kind of Rainbow Wash meditation where I would listen to the music that my acupuncturist played and I would imagine lying on a beach and having the water come rushing over me and washing my body inside, first red waves then orange then yellow, green, blue then purple. Her music had wave sounds so it worked really well.

    Unfortunately the acupuncture didn't do a thing for me. She was so frustrated and sad that I wasn't responding too. She wanted to help me so much. I was her only CFS patient and she even flew to L.A. for a CFS Acupuncture seminar and she talked alot with a naturopath in our town who treated FMS. She said to me towards the end of the year that I was doing everything right, eating healthy and doing Chi Gung and all that but that even her AIDS patients responded better than me to the acupuncture.

    That shows you what we're up against.
  19. Koan

    Koan Be the change.

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    Thank you, Gracenote, for reminding me that it would probably smart to continue the capsaicin conversation in the Pain section. I am the Queen of the non-sequitor!

    I'll follow up over there but just say, quickly, here that the studies re capsaicin and nerve pain are amazing. My Trigeminal Neuralgia (sometimes called the Suicide Pain) is totally under control because I keep the trigeminal nerve depleted of substance P. It's interesting because I can still feel little "bits" of pain in the tiny branches of nerve around my eye because you really don't want to get capsaicin in your eye so I don't apply there - except by accident :eek:

    Marylib, I wonder if your two kinds of pain are trigeminal pain and sciatic pain - the two types of nerve pain I've had, too.

    Teejkay, I so hope this might be a useful part of your arsenal. Funny you should mention shooting pain in the arms because I have that but it's fleeting and not particularly painful, just kinda weird.

    If I had not been able to get the TN under control, I... well, I don't know, I really don't. I wish you relief! Ok, now I will get back on topic. :eek:
  20. Koan

    Koan Be the change.

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    OMG! :eek:

    My father had dreadful migraines and I was plagued by terrible belly pain as a child. I used to hide in the linen cupboard to prevent my mother "helping" me with milk of magnesia, her remedy for all abdominal woes.

    This is all fascinating and makes me wonder if the common "IBS" symptom might be related to abdominal migraines, which might be related to seizures.

    Which brings us right back to derealization and depersonalization which I have always felt - once I was relatively sure I was not either in hell or poised on the brink of madness - was a seizure.

    This is one of the reasons I would not meditate. I was terrified of changing my mental state which seemed so precariously balanced. I can see now how, if one were not prone to anxiety, one could embrace this glitch as a mystical experience.

    I remember how "triggering" even talking about this was when I was in the grip of it so, that's all I will say about that.

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