The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Elephant in Pain

Discussion in 'Pain and Inflammation' started by hellytheelephant, Mar 17, 2016.

  1. hellytheelephant

    hellytheelephant Senior Member

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    I know it is a tough day as I physically can't smile.:cry:

    I have been in constant pain for the last 2 1/2 years. Pain started suddenly in my lower back, glutes (and pudendal when bad ). I have been told here is no meccanical cause of the pain...and no treatment. I tried phsio, chiropracty, osteopathy, pain management ( crap- no understanding of ME!) ,Counselling and anti-depressants are all I have that keep me marginally sane.

    At the beginning i occassionally had the odd few days without pain. Now it is all the time, and since I became dependent on Tramadol and had to come off it, have not had any effective pain medication since last June (apart from Amiltriptaline- which helps me sleep and makes me fat.)

    I am fearful of opoids after the Tramadol debacle, but my quality of life at the moment is so poor I feel I will have no choice but to take them. Already tried paracetamol,ibuprofen, Naproxen, gabapentin, co-codomol. They all bounce off the pain and/or give me really bad side effects.

    Today I am in bed with pain like bad toothache from the small of my back to the bottom of my bum. and no effective pain relief- it's going to be a long day....:bang-head:

    As soon as I stand or sit on the pain is so much worse...it's hard to walk.. My dream is to get the pain enough under control to be able to get a mobility scooter and get out of the elephant enclosure and get me some independence back!

    Seriously- what are you taking? what is working for you?
    Please don't suggest the power of the mind/pain management/ pacing/distraction/prayer/ meditation etc- I do as much of all that as I can. Seriously how do other people cope. maybe some of you are stronger than me and can live with 6,7 or 8/10 pain for the forseeable future- I can't!!!
     
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  2. Keela Too

    Keela Too Sally Burch

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    Can't pass by and not respond. Sadly I have no answers as pain is not a serious issue for me.

    A friend has said Epsom salt bathes relieve pain a fraction. And I found a tens machine great during labour, but I gather is might be less effective for long standing pain.

    Sending soft cyber hugs. Xx
     
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  3. lansbergen

    lansbergen Senior Member

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    I had no choice but to live with it.

    I take a immunemodulator that works for me but that is dangerous in the wrong hands.

    After I started taking the immune modulator it very slowy became less worse and the immune modulator lessened the pain within 10 minites enough to let me sleep for a couple of hours.

    Calling the pain a bad toothache is how I tried to descripe it but it is not exacly the same.
     
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  4. Skippa

    Skippa Anti-BS

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    2x solpadeine max and 2x nurofen plus - covers all angles - that's what i use, please don't copy me without talking to doc, which is what i did.

    You HAVE to be really disciplined and have multiple days off if you go the opiate route, as you say, WDs ain't much fun!

    Oh and a strap on lumbar support sometimes works wonder for me to head off mid and lower back pain before it starts.
     
    Last edited: Mar 17, 2016
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  5. Mrs Sowester

    Mrs Sowester Senior Member

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    Poor you, pain is so miserable.
    You've probably tried these, but just in case; ibuprofen gel has been a life saver for my back and neck pain. Gabapentin has eased my tremors and joint pain and a v-shaped pillow has stopped much of my neck pain by supporting my neck and improving my posture.
     
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  6. lansbergen

    lansbergen Senior Member

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    benzydaminehydrochloride cream helped a bit when it was very bad and helped alot after improvement.
     
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  7. Kina

    Kina

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    That's awful re: the amount of pain you are in.

    What kind of tests have you had? Just because they can't find anything 'mechanical' doesn't mean there isn't anything mechanical, it usually means they haven't looked hard enough or done the right tests.

    Severe chronic pain usually means treatment with some kind of addictive pain killer unfortunately. I personally think it's better to get the pain under control and then start a slow weaning off process when the pain gets under control but that's just me.

    Have you considered gabapentin -- it works really well for some people.
     
  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Medical marijuana?
     
  9. Mrs Sowester

    Mrs Sowester Senior Member

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    @Kina 100% with you on Gabapentin, made so much difference to me. I started low and went slow, only one increase a week and it made me very light headed for a few weeks, but now it's settled in I can't remember the pain that was there before.
     
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    I found gabapentin takes the edge off, but I have to keep the dose very low or it seriously makes me worse
    2x100mg, 4 times day . idiot pharmacist screwed up once gave me 300mg tablets, was wondering why the hell I felt so bad until I noticed this, doh, grrr!

    and Tylex (UK prescription version of Tylenol) for general pain relief

    avoided stronger stuff because of all the issues you described :/

    Found "distraction" very good but yes after certain point of severity even that can be not enough.
    good book/vid on Kindle, lying in bed, very warm is what I do on bad days (most of Winter)
    I find computer games extremely good distraction but they can be too much to take depending on type of game/how bad I am
    Something like Civilization which is on a flat map is easier to handle than Fallout which is 3D
    "turn" based games. slow paced are easier.
    keeps the old brain ticking over
    :)

    another thing I found helps a lot is very hot bath, I note over years folk with M.E. tend to prefer or be worsened by either hot or cold, though of course you have t be careful of effects of either.
     
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  11. PatJ

    PatJ far and free I gaze

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  12. leela

    leela Slow But Hopeful

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    This particular brand of boswellia (anti-inflammatory) works so well when I have back spasm flares:
    http://store.truebotanica.com/store/product/SRW0245P/BackReliefPlus100caps.aspx
    I was very surprised how effective it was when it was first recommended to me. Their Recovery Tonic can be very good in combination.

    I would suggest MMJ, but I think you cannot get that in the UK yet.

    The other thing I use when my migraine days clamp down on every single muscle from mid-back to top of head is compounded butalbital.
    I have it compounded because I do not tolerate the caffeine or acetaminophen added to the commercial butalbital.

    If there is a Feldenkrais practitioner near you, that might offer some relief for the CNS involvement.
     
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  13. JohnCB

    JohnCB Immoderate

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    My pain is different from yours so I am telling you what I use for my problems and I have no idea if it will help you.

    (1). I use codeine mainly, for peripheral pain that starts in my feet and spreads up my legs and then down my arms and when it is worse my fingers are in pain and it becomes a whole body pain. 15 years ago the pain was intermittent and I would use a single codeine in the evening on a bad day. Over time the incidence of the pain increased. As I wasn't taking codeine every day, I don't think it was codeine addiction or habituation. However my overall condition worsened year by year and I did have to increase my painkillers. I was taking 8 a day and it was still getting worse. My GP sent me to the local NHS hospital to see a pain specialist.

    He was an utter fool. He spent the first half of the appointment explaining that he did not no about CFS and then explaining what I should do about it. He gave me a prescription for Tramadol and said I did not need to make a follow up appointment. I waited for a few days and when the worst of the effect of going to the hospital had past, I switched from Codeine to Tramadol. He had prescribed 1 or 2 a day. So I tried one tramadol that morning. It was OK at first until the codeine had flushed out and I needed to take a second tramadol. The next day was worse and I took three tramadol. But I was still in agony. I could not think of anything but the pain,

    I used what effort I could to look up these painkillers and I soon discovered that the effective pain killing power of the tramadol I had been prescribed was much much less than the codeine I had been taking. No surprise I was suffering. As the tramadol were quickly going to run out and as I try to be compliant with doctors' prescribed medication, I did not try increasing the tramadol any further, but returned to the codeine, of which I still had good supplies. I phoned my GP and she switched my prexcription to timed release dihydrocodeine with the option of taking up to three standard codeine a day if the pain broke through. In fact the timed release codeine is working very well for me and is sufficient most days. Occasionally I take one or two of the top-ups when I am bad. I have been on this regime for about a year and a half now, and I haven't felt any need to increase in that time.

    (2). I do get some pain in my back and shoulders. This is postural, I am sure and it depends upon how I am sitting, or lying in bed. When I comes on I have to try and rearrange myself to lett it ease. But I do find Ibuprofen Gel very helpful with this. I note you haven't mentioned Iburofen in your original message, so I would recommend trying this for your lower back at least. You can get it over the counter without prescription. I don't use ibuprofen tablets as my doctor warned against them due to potential interaction with other medication I take for blood pressure, but she is happy for me to use the gel on my skin as that brings less of the drug into my body.

    I hope you can get some relief from your pain. Some doctors simply don't understand how disabling pain can be. My GP is concerned about the level of painkillers I need but she will prescribe enough to do the job.

    I don't understand from your message in what way you were "dependent" on tramadol or how much you were taking. If dependent means you need to take a sunstantial quantity because the pain itself is bad, then I would think you need to take them. OK my principal form of pain is different to yours but being largely free from significant pain (I am never entirely free from pain) makes life more tolerable even if I can still not do much due to PEM.

    Personally I would give the GP some grief until you get some pain relief that works. The average GP doesn't seem able to do much for us but an average GP should at least get you out of serious pain. I find it reassuring to know that my GP is willing to consider even more powerful pain relief if I should come to need it. It may be that you need to reconsider opioids.

    Good luck.
     
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  14. hellytheelephant

    hellytheelephant Senior Member

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    Thank you for all your suggestions.- it has helped a lot to know you all understand- I get moments when I feel like I don't know how to keep going with this.:hug:

    I have tried gabapentin and co-codomol and both made me ill.
    I agree with @JohnCB that GPs seem very unable to cope with managing pain long term....although the pain clinic were the worst: their advice consisted of telling me I need to inform myself which medication to take ( er...that was why I went to the pain clinic !), and to carry on exercising/being active even with bad pain. The latter advice caused me a solid month of flare up.
    @keena I have seen 2x back specialists, osteo and chiro and physio and had MRI scan. Scan is clear apart from slight disk bulges which I was told was usual in someone of my age. They have told me it is the end of the line as far as investigations go, and I just have to live with it.
     
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  15. lnester7

    lnester7 Seven

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    LDN, but you cannot mix with opioids. This is used specially for ME pain. Is an immune modulator also so 2 things for the price of one. The start is hell so you have to be patient and read well first on it.

    I had horrible pain in shoulder blade (inside part) and therapy taught me the right exercise to fortify that area. But I saw a lot of people before one person realized the right muscles to work on.
     
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  16. Sushi

    Sushi Senior Member Albuquerque

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    I wonder if you have been evaluated for EDS (Ehlers-Danlos Syndrome)? It is often a missed diagnosis and can cause lots of pain. It is the source of my pain, and it isn't fun! I really sympathize!
     
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  17. Crux

    Crux Senior Member

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    Hi @hellytheelephant ,

    Chronic pain is torture, it's terrible that you, and we suffer this.

    I keep finding things that work for a while, then, they don't.
    Now, I'm suspecting that excessive production of Nitric Oxide is causing much of this pain, mostly nerve pain.

    Nitric Oxide is a gas, and it is produced in the body for many protective roles, but, in excess, it can become inflammatory.

    The body will produce it to fight infections, and I believe that's why reducing infections has relieved a great deal of pain, in my case.

    I've been pulse dosing antibiotics this past year, but still taking them. ( Recent oral surgery/ signs of infection with pain/ now on abx again. Pain is almost gone.)

    Here are a few links about the association of Nitric Oxide (NO), and pain, but you will see that it also has analgesic properties. I think it depends on the type of NO, the amount produced, along with the type of condition, such as trauma.

    http://www.ncbi.nlm.nih.gov/pubmed/25846616
    http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0100-879X2015000400363
    http://scimetr.com/20987.fulltext
     
  18. Valentijn

    Valentijn Senior Member

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    I had chronic background pain, though it was never severe. High dose hydroxoB12 injected into the muscle twice per week helped somewhat with that. But it was after a year or 18 months of IV then oral antibiotics that my pain went away.

    But again, maybe it was a different type of pain than yours. Mine was more of a deep muscle or vascular pain, and body-wide.
     
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  19. AnnaDove

    AnnaDove

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    @hellytheelephant , So sorry you are suffering like that. I will share a couple of things that helped me. About 15 yrs ago, I developed frozen shoulders, the right being the worst. The doctor wanted to do surgery, but I wanted to look into other things. I went by my chiropractor going home and he could not do anything for me. On the way out of his office I spotted a product on the counter, Biofreeze and thought "what the heck, couldn't hurt". Used it at bedtime and it releived 50% of the pain. Thereafter I used it AM & PM. It took a year for the shoulders to let go, but after that I could move freely and have had no problem since.

    In years prior to that, I had all over joint and muscle pain. I was diagnosed with Wilson's Thyroid Syndrome and started treatment for it. I want to make clear here - I had been to several endo docs over 25 yrs who pronounced me fine. It was my alternative medicine MD who found it. It took a long period of treatment for me but I am free of that pain today. I do so hope you can get some relief soon.
     
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  20. Hip

    Hip Senior Member

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    I went through a stage for a month or two where I was getting intermittent stabbing pain in my lower back muscles, pain so sharp that it could make me instantly drop to the floor. I had no idea that muscles could be a source of such intense pain.

    This pain was linked to some slight muscle cramps in the muscles.

    My doctor suggested that standard anti-inflammatories like ibuprofen are worth trying. And sure enough, this made a major difference within an hour or so of taking it.

    TENS machine can also be used for muscle pain.


    Do you know if your back pain is coming from the muscles?

    It could also be a spinal thing (some new research has found lower back pain is associated with a spinal disc infection with anaerobic bacteria, refs: ).
     
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