Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Pain treatment

Discussion in 'Pain and Inflammation' started by Hugo, Dec 5, 2016.

  1. Hugo

    Hugo Senior Member

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    It would be interesting to hear positive and negative responses of all kind of pain treatment. mostly for fibro pain and lyme pain. The pain treatment I know about and some of them I tested is.
    LDN, all kind of over the counters pain killers (like paracetamol), Omega 3 in large quantities, antioxidants, TENS, acupuncture, devils claw, curcummin, lyrica, cymbalta, opiods, cannabis, infraredsaunas, vagus nerve stimulation (both surgery and other vn stimulation), capsaicin, boswellia and bromelain

    The question is ofc rather generall to be in the pain forum but Im interested in everything since I will go all in to treat my lyme pain now. My first try will probably be LDN, TENS and maybe lyrica..
     
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  2. Valentijn

    Valentijn Senior Member

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    Injections of high doses of hydroxoB12 get rid of the chronic deep muscle/vascular-feeling ache for me.
     
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  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Cannabis would be a quick experiment to see if it works for you. Some potential treatments, like LDN, may take weeks or months for effect, while cannabis is almost immediate.

    I don't have pain, so not speaking based on personal experience, but on what others have mentioned worked for them.
     
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  4. Hugo

    Hugo Senior Member

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    Ah interesting, I did mehtyl injections before. But that was before lyme and pain.
     
  5. Hugo

    Hugo Senior Member

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    Yes unfortunately not legal where I live even though heavy drugs are completly legal on prescribtion. To much politics and no science regarding this drug.
     
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  6. hellytheelephant

    hellytheelephant Senior Member

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    Hi @johmil
    chronic pain is one of my most serious symptoms- I get pain in mid back,lower back, glutes, tops of legs, groin etc as well as overall deep aching pain and migraines.
    I have tried: Ibuprofen ( only works on period pain/migraine for me)
    After a LOT of experimentation I have Amiltriptyline so that I will sleep through the pain- this generally works for me, although it does make you put on weight :(
    I also have Tramadol:balloons: which I take with paracetamol when I've got to the 'I'm going out of my mind' stage. Having been prescribed lots of meds that don't touch the pain, Tramadol:balloons: is the weakest thing that has any effect. However I have to be careful not to keep increasing my use of it, as the body gets tolerant quite quickly...and am high when on it.
    I have used TENS in the past but for me it wasn't great.

    Natural things that have helped: burning lavender oil to calm me down when the pain makes me anxious, Meditation ( I highly recommend this), direct heat ( hot water bottle/heated blanket), Bach flower Impatiens Remedy, which is the recommended remedy for pain-it doesn't take away the pain but greatly improves ability to deal with it.

    On the subject of medicinal cannabis use:this is for parkinson's but as we have as sufferers have many neurological symptoms, I think it is of relevance. I should clarify that I have not tried it myself ( am in Uk), and am not in anyway recommending it's use....but as someone else said we are already being prescribed very strong meds for pain.
    http://theantimedia.org/former-cop-cannabis-parkinsons-disease/
     
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  7. Hugo

    Hugo Senior Member

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    It is a very serious symtom for me aswell. I tried cymbalta and that was completly worthless and just gave negative mood symtoms. I also tried devils claw and it doesnt seem to work but Im not sure. Inosine seems to stabilize most symtoms in my ME and maybe helps with pain aswell. Im sure infrared saunas would help a lot, but would probably increase ME symtoms (have you tried that?) Vagus nerve surgery would probably help a lot anyone got that rare surgery?

    Im not very scared of the danger of cannabis. Pain killers could be a lot worse than that. I probably can get a prescribtion in another european country with more liberal laws. But I can only import it for a couple of days use according to the laws.
     
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  8. hellytheelephant

    hellytheelephant Senior Member

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    I think for me, the important thing is to feel that I have a plan in place for when it gets bad. There is nothing worse than waking up after days of bad pain and feeling that you can't see beyond it.

    Drs are very reluctant to give opoids for chronic problems in this country, so I have really had to stand my ground. Actually to me it is a human rights issue: no one should be left in horrendous pain without the ability to reduce it, and in my experience long term pain without pain relief can really wear down your mental health.

    I'm sure there are other people on here who will say they can manage without meds, but as a meditating advocate of alternative and complementary remedies, I am very very grateful to have the Tramadol.
     
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  9. Hugo

    Hugo Senior Member

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    Agree.

    Have you tried lyrica?
     
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  10. hellytheelephant

    hellytheelephant Senior Member

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    No- I reacted very badly to Gabapentin so I didn't want to try Lyrica ( Pregabalin).

    Everyone reacts differently to these things.
     
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  11. Hugo

    Hugo Senior Member

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    Yes very true.

    May I ask if you have tried LDN? I did that a while ago before I had pain. It had the strange effect of causing me pain in my knees so I stopped.

    Heat seems to good for nearly everyone but it has its downsides aswell.
     
  12. lnester7

    lnester7 Seven

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    I am on LDN 9mg ( doctor told me to go up until pain was under control, 4.5mg was a recommended but I could go up).

    2) I do other things but did before too so I am sure that didn't do it: fish oil 4K a day....

    3) I started L-glutamine 2 tablespoon a day.

    I am sure was the 9mg of LDN or the Lglutamine. Only 2 things where the pain was so under control not sure which one did it. My pain was intolerable. Much better now ( I still have rough days but compared to what it was) is pretty good
     
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  13. Hugo

    Hugo Senior Member

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    Aha interesting if I would to guess its probably LDN. But maybe a combo.. I wouldnt stop anything ofc.
     
  14. Hugo

    Hugo Senior Member

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    Where did you start with LDN on what mg? Did you take it as a pill or fluid? Did you use a ordanary pharmacy or a pharmacy with special knowledge of LDN?
     
  15. Valentijn

    Valentijn Senior Member

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    MethylB12 might not be effective in the same manner. HydroxoB12 is supposed to scavenge freed radicals or some such, which methylB12 wouldn't be doing.
     
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  16. hellytheelephant

    hellytheelephant Senior Member

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  17. adelheid55

    adelheid55 Senior Member

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    I have started LDN some weeks ago and am now on 4,5mg. So far I do not see any change in pain levels. Our local pharmacy made the capsules from a higher dose of naltrexone.
    I take amitryptiline and Gabapentin along with melatonine in the evening and am able to sleep relatively well most nights.Tthis is very important for me because then i'm able to deal with the next day( the dealing with the next day being very reduced).
     
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  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Lyrica is great for fibro pain. I've been taking it for over 10 years.
     
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  19. lnester7

    lnester7 Seven

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    I started very low, that crap did not agree w me. So it was like .5mg or lower I started and took me like 2 years to go to the 4.5mg I went from 4.5 to 9mg all at once w no problem.
    I use a compounding pharmacy nothing special. Doctor faxes prescription then they prepare. I can ask them if they sell without prescription I never asked.
    On the side note they are expensive it costs me US$80 a month
     
  20. Hugo

    Hugo Senior Member

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    Thanks, so its an antioxidant and may loose some of that effect as a methyl? I tried behepan shots (hydroxo) a long time ago but it may have been to few and far between. Also I didnt have pain then so it may have some effect for that now.. could be worth a try.

    Great to hear that. I noticed some have excellent effect of lyrica. Do you have any of the side effect and on what dose where you able to get your positve result?

    Aha seems to be the case for many of us. We have to start with very low dosage. I tried it several years ago but my doctor for some reason gave me a prescription for 5mg. That was not a funny experience with pain in my knees for several weeks after the short treatment (I gave up just after a couple of days).

    It was a lot of talk at that time I remember that it was important to use a compounding pharmacy that used right kind of fillers (or whatever you call it) in the pills. I remember that one pharmacy in scotland was something that was recommended. But this was a long time ago.. so I dont know whats recommended anymore.
     

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