Pain Relief

Hi everyone. I haven't been on here for some time, I suppose time just flies by so thought I would ask you lovely people for your thoughts regarding pain relief. On of the symptoms of my many conditions, is that I suffer with terrible chronic pain and over the years have tried everything. I'm now on tramadol and morphing but as I'm sure you know they do not do much good for my bowel and gut problems or your need to leave in the real world!!!! I heard of a drug called Saltivax which is marijuana based legal drug but only legal for MS patients in the Uk. I was wondering if anyone has been able to try this or have any other suggestions for medications that work. A lot of the gabbapentin and other such drugs caused me to loose all my hair and have other unpleasant side effects so I'm interested in what works for other people. Thanks for your help. Sam

8 Replies

  • Hi Sammy, I'm so sorry that you are having such a tough time. Can I ask what is the cause of your chronic pain as that will help guide my answer specifically.

    I have found that Acupuncture has helped me enormously in many ways. As you know when on Anticoagulation you are very limited to the pain killers you can use. I was referred to Acupuncture via my local pain clinic and have found this treatment to be the best all round as it deals with the whole body. If I have a flare they can deal with that specifically.

    Tramadol and the patches you are on are very addictive and you may find yourself needing higher doses for very little benefit. If I were me I would start looking at alternatives to these drugs as they just mask what is going on rather than helping to calm the root cause. Are you on Plaquenil? That would be a suggestion too if not.

  • Hi, yes I am aware of the prescription drug you mention and yes it is currently only for patients with MS on a named patient basis only I believe. Firstly please get your thyroid checked, a thyroid not functioning will cause extra pain in the body, and the TSH is not good enough, as the only test for this. I do all the tests privately which I fund myself, listed on Thyroid UK, also get your vitamin D, and B12 with Iron checked. Drug wise, including giving up gluten as it made me worse, I am on a drug called Low Dose Naltrexone, I fund this myself through a private doctor, I have had a huge reduction in my pain. Diet wise I am not on Warfarin and I follow an extremely healthy diet - Mediterranean, for 30 years, minus the gluten. I exercise daily and take a host of supplements. My thyroid being treated has also improved things.

    Also are you on Plaquenil?


  • Hi thank you for your advice I'll def look into the drug you mentioned as not tried that one. Thyroid and other things been checked many times so it's not to do with that. I have lupus, Pots, vasovagal syncope, APS, damage to lung after had bad PE, possible crumbling discs, trapped nerve, bowel and bladder problems, pacemaker and I won't wore you with anymore haha!!!! Pain is something that if I could get a bit of relief would make a massive difference in my life. Thanks for your advice

  • When you say your Thyroid has been checked many times, the GP and consultant will probably have only done the TSH test, nothing showed up in me with that. T

    he ones you would have to do, to be sure would be: I pay for mine and get them done! Regarding LDN no GP will prescribe that to you, it is something you have to engage with a private doctor over, however it works for me, also are you on Plaquenil? Also I have degenerative discs, keeping your vitamin D, B12 and iron at the right levels makes a huge difference.

    Also ditching gluten has made a huge difference to me, bowel and bladder problems are much better! It is a big change though, but not one I will ever go back to, eating gluten, with autoimmune disease. MaryF

  • Thank you. No longer take plaquenil but I'm on warfarin.

  • I take a drug called Targin - it's a combination of Oxycodone and Naltrexone and the dose is 10/5mg. - it's a long acting pain killer and also Endone (faster acting) I tried Pregabalin (no relief), Tramadol (made me sick and didn't work all that well) and another Opioid that was given in Hospital that sent me off the planet! Initially I was taking it 2xdaily and and 2 or more of Endone. My pain always gets worse in Winter and in Summer I might only need the Endone twice a week. The combination drug is to minimise the constipation that goes with Opioid use. It can be addictive but I've never had to increase my dose and sometimes drop it so my Rheumy is happy to keep me on it and let me monitor dosage.

    The one biggie that helps my pain is exercise-I walk pretty much every day-even if I don't feel like it! Unless pain is really bad or fatigue has hit me then I will skip a day or so.

  • Hi I've got sacroiliitis which is inflammation of the tail joint. I take tramadol Mr 50mg at night with amitryptyline. Co-dydramol during the day if needed but luckily for me it's rare.

    The Mr form lasts 12 hours and gives less side effects. An alternative to amitryptyline is nortryptaline.

    All are safe with warfarin. Good luck and I suggest a referral to a pain clinic may help.

  • I used marijuana once to see if I could get better sleep with out prescription drugs, but for me it actually made my pain much worse! I'd be interested in seeing if some of the other strains would help, but they just legalized medical MJ in NY, and it is still quite of an ordeal to get it.

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