Help for PHN pain?

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Has anyone tried medical marijauna (spelling?) for PHN pain?

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  • Posted

    Yes. I am in the US and live in a state that it is legal. I am still tweaking the dose for my PMR (polymyalgia rheumatica) for which I have had positive results in stopping pain BUT the dose for that has not remotely affected the pain I have from PHN.

    Now, having said that-a higher dose of the medical marijuana may help but I am currently focussed on the PMR dose. I had hoped there would be residual side effects on the PHN but not so far. I am using a tincture of 1:1 at present. If things change and they may as I am still in experimenting phase I will report back. 

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    • Posted

      I am looking forward to your progress report on using medical marijauna for PHN pain. Is the oil the form you are using? Can you educate me when you say you are using a tincture of 1:1 for your PMR? Are you working with your PCP or your neurologist in determining what form and in what amount to use?

      Right now I am only using gabapentin to take the edge off my pain and am just starting to be educated on medical marijauna. 

       

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    The tincture is 1:1 meaning 1 part CBD and 1 part THC. The strength of the tinctures are variable. Example: A tincture that contains 5 mg of CBD and 5 mg of THC in .99cc, will deliver 1.6 mg of both CBD and THC in a .33cc dose. It's a little confusing at the beginning figuring doses I can tell you. You want to begin very low, assess and precisely up the dose a bit at the time until you see results. Right now I am trying to figure out if I need a circulating blood level of the CBD and THC, dosing every 5-6 hours or can I just use it on as needed basis. I am working with a physician who is a medical marijuana provider and we are brainstorming the process together. I can tell you that it is quite frustrating trying to figure out the right dose so don't lose heart if you get into a program and you feel yourself rather a bit on your own. Keeping a diary definitely helps!  

     

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  • Posted

    Mine is in the area of about dermatone 8 on the right side and I've had it for @30 years now. Tried everything just like everyone else.

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    • Posted

      Are u serious. 30 years right now. I wanna cry. Im 1 yr half in with horrendus pain all over stomach and back   I had it before in neck 10 yrs ago and can still feel it tho it s not as intense. The pain i have now has barely lessened in a year n half. Please tell me it at least lessons. I read all this crap about oh it will go away.  When i tell people i can still feel it frum. 10 years agonthey thinknim crazy and always wanna call it sumn else. Not making this up people. Fu$@
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    • Posted

      In my case it waxes and wanes. When it's off the charts I have to wear a back belt-as tight as I can get it and then I take washrags or whatever-ball them up and tuck inside the back belt to put counter pressure on the sites that are off the chart firing.Counter pressure on the sites that is almost painful helps me a lot when it gets too bad. I also do acupuncture when the pain is intolerable- it helps some. Mostly it usually devolves into a strictly personal, whatever works for you routine. I wish to goodness the Cannabis worked. I suspect it would if the dose was high enough but I truly truly hate the side effects of "too much" THC. I'm like you, not sure I believe that it eventually goes away but I'd love to have some proof. Don't stop searching for something to help you and don't take it to heart too much if they call you crazy or are impatient with you (us) they just don't have the first clue what we're dealing with. Remember-in the medical field the definition of pain is "what the patient says it is". Knowing there are others like us out there helps because it's wonderful to talk to someone else who actually knows what we're going through. 

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    • Posted

      Hey kay thanks for gettn back. How long have u had the pain and had it let up any? Inunfortunatly have found nothing helps mine. Tho i have decided to not take the gabapentin my doc precscibed. Am i foolish. The drug scares me frum what ive read. I dont want a personality change thininown my own business and work 55 hrs a week while dealing with my whole midsection being numb. Theres days i just wanna givnup but there is no mot showing up to work for me   Im 38 and retirement is twenty to thirty years away for me. The first time in my neck the pain lessened so much over ten years that it is not much an issue. But with it being in my stomach and back arra it is waaaaaay more debilitating this time. I just wanna know how long it goes on for. Ive read on here people goin on for thirty years with it but does it lessen?!! Like my first bout did?  It affects my breathing by shooting pains with each deep breath and after i eat a meal my stomach just grumbles and is so uncomfortable. I have three kids under three and it devistates me that i cannot play with them and pick them up cause when thwy touch my stomach inwaana scream. Just finding it sondifficult to enjoy anything. I used to play muaic wveryday now i just cant summon the energy. I try to temain optomistic but ill feel slightly better and get in my head it might go away then the next day i wake up and its back to insane pain. Ive done chiropractor laser naturapath for a year taking theyre drops and vitamins. Tried fasting for ten days. The only thing that helps is if i lay on my back and take pressure off tummy. Wearing pans is painful esspecialy with a belt. I bassically just have my pants barely hangong on. Injust find it crazy that one day uneake up with this and thats it. Life forever changed. Tough pill to swallow when your thirty and starting a career and family. Any recomendations? It sounds different for wverybody. I really rhink stressing myself too much got me here and am t eally trying to change the way inlook at life etc. I doubted myself all the time and stressed alot about taking over my fam business and just generally fought my situation in life daily. I presume this made me ill and it almost seems like payback from god for my deep down negativity. Though noone thinks im negative inhid it deep down. Im very well liked at work but i pent up alot of rage about my situation in life and always looked st other oeople situations in life in jealohsly like onthey have it so mych easier than me   I think being over worked and working with an older brother who is so hard to please had sumn to do with my stress. Did stress have afaxtor for u. I try meditation and that helps ever so slightly but only whilenim doing it. Doesnt leave lasting help. Sorry to go on i just found this site and am gateful i can talk to people cause the doctors just look at me like im feedn them bs around here. Im so sick of hearing o noone had lasting pain like this frum shingles its prob sumn else. Well its not sumn else intell them ive had pain frum first time still isnt that enough proof that this can gonon years. It seems somlisunderstood by docs but then seems so common. Its confusing and discouraging. Do i bite the bullet and take the meds ?  What helps u ??  Thanks for your time 
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    • Posted

      I also medicste with smoking marijuana. It works the best outta nything really but it doesnt take the pain away. It more just alters my state of mind to not think so negativly and generally helps my mood. It might take the edge of slightly but barely puts a dent in the pain. I smoke a total of two joints a day. Hope this helps u 

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    • Posted

      Hey kay thanks for gettn back. How long have u had the pain and had it let up any?

      I’m 66 and I developed PHN when I was 35. I went until I was about 55 before I  had a diagnosis and I figured it out myself.Always thought it was a compressed disc in my back because I knew the pain was a “nerve Pain” when it occurred. I went to unbutton a blouse, fingers brushing my stomach in the front on the midline and when that action “triggered” the pain I knew that wasn’t possible for a back injury. I also realized the pain wasn’t crossing my front “midline”. I sat down and typed in “shingles without a rash” and “zoster sine herpete” popped up! Bingo-I knew what I had and went straight to my Dr. who referred me to a pain Dr. I tried Lyrica and it works for me-for the pain-however I choose not to take it because of all the untoward effects. It befuddles me way too much to the point I can’t drive or make any other adult decisions. In the meantime between 35 and 55 I just toughed out what I thought was a pinched nerve. Capsaicin, lidocaine and topicals don’t’ work. Accupuncture as I said earlier when I just can’t get away from it and it’s off the scale. Tylenol #3 at night just to rest between shocks is sometimes an option but its oh so temporary and fleeting. Inunfortunatly have found nothing helps mine. Tho i have decided to not take the gabapentin my doc precscibed. Am i foolish. No not foolish, I quit taking the Lyrica but keeping an open dialogue with your physician is always a good idea. The drug scares me frum what ive read. I dont want a personality change thininown my own business and work 55 hrs a week while dealing with my whole midsection being numb. Theres days i just wanna givnup but there is no mot showing up to work for me  We all have those days/months believe me but it is possible to work and have a life it’s just harder for us.  Im 38 and retirement is twenty to thirty years away for me. The first time in my neck the pain lessened so much over ten years that it is not much an issue. But with it being in my stomach and back arra it is waaaaaay more debilitating this time. I just wanna know how long it goes on for  As much as you want that answer I’m afraid it’s an individual one regarding time and as you just described yourself when it was in your neck it waned. Do you remember why it waned or what you were doing that was maybe less stressful than now?. Ive read on here people goin on for thirty years with it but does it lessen?!! Like my first bout did?  It affects my breathing by shooting pains with each deep breath and after i eat a meal my stomach just grumbles and is so uncomfortable. I have three kids under three and it devistates me that i cannot play with them and pick them up cause when thwy touch my stomach inwaana scream. Try a “binder” of some sort for your chest. It really does help keep the constant touching from clothes or contact from firing the nerves. Just finding it sondifficult to enjoy anything. I used to play muaic wveryday now i just cant summon the energy. I try to temain optomistic but ill feel slightly better and get in my head it might go away then the next day i wake up and its back to insane pain. Ive done chiropractor laser naturapath for a year taking theyre drops and vitamins. Tried fasting for ten days. The only thing that helps is if i lay on my back and take pressure off tummy. Wearing pans is painful esspecialy with a belt. I bassically just have my pants barely hangong on. Injust find it crazy that one day uneake up with this and thats it. Life forever changed. Tough pill to swallow when your thirty and starting a career and family. Any recomendations?Actually yes. All of us have had the same dialogue with ourselves about this not being fair. When I’m at my worst I find someone else who has it so much worse than me and count my blessing. As a medical person I don’t have to look far I can tell you. I don’t have cancer or a life threatening illness at this point and I’m grateful. It sounds cheesy but it works for me I can tell you. It sounds different for wverybody. I really rhink stressing myself too much got me here and am t eally trying to change the way inlook at life etc. I doubted myself all the time and stressed alot about taking over my fam business and just generally fought my situation in life daily. I presume this made me ill and it almost seems like payback from god for my deep down negativity. Nope-not payback from God and lighten up on yourself. A lot of pain comes from resistance to what we can’t change and our poor (but misplaced) perception of ourselves. Re-teach yourself what you are teaching your children about self-worth and then model it for them every day. Won’t be easy but can be done and it’s worthwhile to  you and the children.  Though noone thinks im negative inhid it deep down. Im very well liked at work but i pent up alot of rage about my situation in life and always looked st other oeople situations in life in jealohsly like onthey have it so mych easier than me. You are probably using a very bad yardstick using “others” to measure your life. Focus on yourself not them and laser tighten your energies where they belong-on you-and not scattered out amongst others who are usually indifferent and unaware. They don’t do it to be unkind, they’re just-rightfully so- focused on their own lives.  I think being over worked and working with an older brother who is so hard to please had sumn to do with my stress. Did stress have afaxtor for u.  Yes! Yes! A thousand times yes to stress-however we all have it but how we learn to cope is what’s important. I remember being 35 and my mindset now on what’s really important is vastly different than where I am now…but that’s just wisdom coming with age and experience. I could go into great detail but you know what-everyone thinks their life is the hardest and no one else could possibly understand all the misery and trials they’ve been subjected to. Once you truly know this, do some contemplative thinking, you’ll see it’s true. It’s similar to investigative reporting. What seems so straightforward on the news regarding a situation takes on a different light when all the behind the scenes details are brought to light. That’s how other people’s lives are-never what they seem on the surface so again-refocus on yourself and your own life and needs. I try meditation and that helps ever so slightly but only whilenim doing it. Doesnt leave lasting help. Great beginning-and it’s like everything else it takes practice and it will become lasting or at least it will begin to creep into facets of your daily life when you least expect it. You will be pleasantly surprised when peaceful thoughts or solutions occur without your conscious volition. Best thing you could ever do is continue this and teach your children too. Sorry to go on i just found this site and am gateful i can talk to people cause the doctors just look at me like im feedn them bs around here. Im so sick of hearing o noone had lasting pain like this frum shingles its prob sumn else. Well its not sumn else intell them ive had pain frum first time still isnt that enough proof that this can gonon years. It seems somlisunderstood by docs but then seems so common. Its confusing and discouraging. Do i bite the bullet and take the meds ?  Why don’t you at least try it? You can always stop if you have side effects.What helps u ??  Thanks for your time Glad to help and hope it did.

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    • Posted

      Matt- I'm so sorry but I replied to you in your own paragraphs and hilighted my replies in yellow. The highlights didn't transfer but my answer is in there.

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    • Posted

      Matt- here is my reply again-with spaces to make it easier to read. (Sorry everyone for the double post)

      Hey kay thanks for gettn back. How long have u had the pain and had it let up any?

      I’m 66 and I developed PHN when I was 35. I went until I was about 55 before I  had a diagnosis and I figured it out myself.Always thought it was a compressed disc in my back because I knew the pain was a “nerve Pain” when it occurred. I went to unbutton a blouse, fingers brushing my stomach in the front on the midline and when that action “triggered” the pain I knew that wasn’t possible for a back injury. I also realized the pain wasn’t crossing my front “midline”. I sat down and typed in “shingles without a rash” and “zoster sine herpete” popped up! Bingo-I knew what I had and went straight to my Dr. who referred me to a pain Dr. I tried Lyrica and it works for me-for the pain-however I choose not to take it because of all the untoward effects. It befuddles me way too much to the point I can’t drive or make any other adult decisions. In the meantime between 35 and 55 I just toughed out what I thought was a pinched nerve. Capsaicin, lidocaine and topicals don’t’ work. Accupuncture as I said earlier when I just can’t get away from it and it’s off the scale. Tylenol #3 at night just to rest between shocks is sometimes an option but its oh so temporary and fleeting.

       Inunfortunatly have found nothing helps mine. Tho i have decided to not take the gabapentin my doc precscibed. Am i foolish.

      No not foolish, I quit taking the Lyrica but keeping an open dialogue with your physician is always a good idea.

       The drug scares me frum what ive read. I dont want a personality change thininown my own business and work 55 hrs a week while dealing with my whole midsection being numb. Theres days i just wanna givnup but there is no mot showing up to work for me

       We all have those days/months believe me but it is possible to work and have a life it’s just harder for us.

        Im 38 and retirement is twenty to thirty years away for me. The first time in my neck the pain lessened so much over ten years that it is not much an issue. But with it being in my stomach and back arra it is waaaaaay more debilitating this time. I just wanna know how long it goes on for 

      As much as you want that answer I’m afraid it’s an individual one regarding time and as you just described yourself when it was in your neck it waned. Do you remember why it waned or what you were doing that was maybe less stressful than now?.

       Ive read on here people goin on for thirty years with it but does it lessen?!! Like my first bout did?  It affects my breathing by shooting pains with each deep breath and after i eat a meal my stomach just grumbles and is so uncomfortable. I have three kids under three and it devistates me that i cannot play with them and pick them up cause when thwy touch my stomach inwaana scream.

       Try a “binder” of some sort for your chest. It really does help keep the constant touching from clothes or contact from firing the nerves.

       Just finding it sondifficult to enjoy anything. I used to play muaic wveryday now i just cant summon the energy. I try to temain optomistic but ill feel slightly better and get in my head it might go away then the next day i wake up and its back to insane pain. Ive done chiropractor laser naturapath for a year taking theyre drops and vitamins. Tried fasting for ten days. The only thing that helps is if i lay on my back and take pressure off tummy. Wearing pans is painful esspecialy with a belt. I bassically just have my pants barely hangong on. Injust find it crazy that one day uneake up with this and thats it. Life forever changed. Tough pill to swallow when your thirty and starting a career and family. Any recomendations?

      Actually yes. All of us have had the same dialogue with ourselves about this not being fair. When I’m at my worst I find someone else who has it so much worse than me and count my blessing. As a medical person I don’t have to look far I can tell you. I don’t have cancer or a life threatening illness at this point and I’m grateful. It sounds cheesy but it works for me I can tell you.

       It sounds different for wverybody. I really rhink stressing myself too much got me here and am t eally trying to change the way inlook at life etc. I doubted myself all the time and stressed alot about taking over my fam business and just generally fought my situation in life daily. I presume this made me ill and it almost seems like payback from god for my deep down negativity.

       Nope-not payback from God and lighten up on yourself. A lot of pain comes from resistance to what we can’t change and our poor (but misplaced) perception of ourselves. Re-teach yourself what you are teaching your children about self-worth and then model it for them every day. Won’t be easy but can be done and it’s worthwhile to  you and the children.  

      Though noone thinks im negative inhid it deep down. Im very well liked at work but i pent up alot of rage about my situation in life and always looked st other oeople situations in life in jealohsly like onthey have it so mych easier than me.

       You are probably using a very bad yardstick using “others” to measure your life. Focus on yourself not them and laser tighten your energies where they belong-on you-and not scattered out amongst others who are usually indifferent and unaware. They don’t do it to be unkind, they’re just-rightfully so- focused on their own lives.  I think being over worked and working with an older brother who is so hard to please had sumn to do with my stress. Did stress have afaxtor for u. 

      Yes! Yes! A thousand times yes to stress-however we all have it but how we learn to cope is what’s important. I remember being 35 and my mindset now on what’s really important is vastly different than where I am now…but that’s just wisdom coming with age and experience. I could go into great detail but you know what-everyone thinks their life is the hardest and no one else could possibly understand all the misery and trials they’ve been subjected to. Once you truly know this, do some contemplative thinking, you’ll see it’s true. It’s similar to investigative reporting. What seems so straightforward on the news regarding a situation takes on a different light when all the behind the scenes details are brought to light. That’s how other people’s lives are-never what they seem on the surface so again-refocus on yourself and your own life and needs.

       I try meditation and that helps ever so slightly but only whilenim doing it. Doesnt leave lasting help.

      Great beginning-and it’s like everything else it takes practice and it will become lasting or at least it will begin to creep into facets of your daily life when you least expect it. You will be pleasantly surprised when peaceful thoughts or solutions occur without your conscious volition. Best thing you could ever do is continue this and teach your children too.

       Sorry to go on i just found this site and am gateful i can talk to people cause the doctors just look at me like im feedn them bs around here. Im so sick of hearing o noone had lasting pain like this frum shingles its prob sumn else. Well its not sumn else intell them ive had pain frum first time still isnt that enough proof that this can gonon years. It seems somlisunderstood by docs but then seems so common. Its confusing and discouraging. Do i bite the bullet and take the meds ?  

      Why don’t you at least try it? You can always stop if you have side effects

      .What helps u ??  Thanks for your time

       Glad to help and hope it did.

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    • Posted

      Thanks for your amazing reply kay inteally appreciate it. So u never had the blisters? Where does your pain go again?   So has the pain lessened in any way   I know mine fluctuated in intensity but it def always there. Like a belt tied tight that it makes it hard to breath.  Anything wrapped around me pants belt etc is hell cause its right on that pant line area. Breeze and lightly touching mine doesnt bother mine.  Is it common to slowly go away   I did nothing different ten yrs agonto make mine lessen. Time just didnit. I knew nothing about this stuff back then and didnt take any meds during or after outbreak.  I have had stress monstop so it not like stress lessened and i got better.  What sorta stress didnu go under before contacting this. Did it happen in a day. Wake up and feel like hell or did it slowly come on.  Mine came on slowly the. The blisters came then the massive pain came after the blisters left. Thanks for your help so much. Matt frum sarnia ontario
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    • Posted

      No-mine came on out of the blue. I had no idea if I had blisters or not, I never saw anything. That’s why it took so long to figure out what was wrong with me-over 20 years…

      Yes stress was acutely high at the time and I’m sure that’s what brought it all on. I was so afraid to move for fear of triggering the “shock pain”. My primary Dr.didn’t have a clue. Thought it was a disc too…

      It finally lessened and finally went away but it always comes back in vary degrees of intensity probably directly related to the stress I am currently undergoing.

      My pain is around the 8th dermatone. However I have had an outbreak of small blisters on the dermatone above it with no pain in that area-just area  8.

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    • Posted

      My mother in law had the same thing with no blisters. Thank god she found out after a year what it was. She still deals with it though her pains down to a four   Shes approaching her 2nd year. Such mysterious stuff. What stress are u under now. Im really trying to redirect the stress and am getting pretty good at it. Negative thoughts are bouncing off of me now. Im ising this pain to become a better human to the people around me and im already noticing my life improving at least. Pain still there tho im optimistic. How long didnit take fornyour pain to let up. Hope your finding a way to beat the stress. Wanna hear frum everyone here that theyre getting better and that the healing comes speedier. Sending courage your way kay
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