Fibromyalgia Novel Pain Treatments

[Steve]

I decided to start yet another thread here to see if anyone has tried unusual treatments for FM pain and had any success. I'm frankly too tired right now to list all of those I've tried that one might regard as novel (especially since none have worked) but I did have a question for members. Has anyone tried shrooms i.e. " magic mushrooms" which contain psilocybin or derivatives? Someone I know well just went to Amsterdam recently and tried level one 1 shrooms (they go up to 5) and had a life changing experience. He was wondering if they might help my FM severe pain, even for the 4-6 hours the experience lasts. Psilocybin, while illegal here in U.S., has a remarkably safe profile for both psychological and biological effects. It intensifies sensory experience to a huge degree. It is uncertain as to whether such effect would be positive or negative for FM pain, a sensory condition regardless of how you conceptualize it. I would be interested in knowing if anyone has tried it via shrooms for FM. I have never used hallucinogens so this would be a pretty big deal. Of course, any other novel treatments are also welcomed here.

 

[Cort]

I decided to start yet another thread here to see if anyone has tried unusual treatments for FM pain and had any success. I'm frankly too tired right now to list all of those I've tried that one might regard as novel (especially since none have worked) but I did have a question for members. Has anyone tried shrooms i.e. " magic mushrooms" which contain psilocybin or derivatives? Someone I know well just went to Amsterdam recently and tried level one 1 shrooms (they go up to 5) and had a life changing experience. He was wondering if they might help my FM severe pain, even for the 4-6 hours the experience lasts. Psilocybin, while illegal here in U.S., has a remarkably safe profile for both psychological and biological effects. It intensifies sensory experience to a huge degree. It is uncertain as to whether such effect would be positive or negative for FM pain, a sensory condition regardless of how you conceptualize it. I would be interested in knowing if anyone has tried it via shrooms for FM. I have never used hallucinogens so this would be a pretty big deal. Of course, any other novel treatments are also welcomed here.

I have Michael Pollan's new book on just this subject. Haven't read it yet but it's intriguing.

I'll have a blog coming out soon on another new pain treatment.

I assume that you've tried LDN?

 

[Steve]

Hi Cort,
I vaguely knew Pollan had written one but it had slipped into old age memory, will check my libe, thx.
I tried LDN years ago before I was on Tramadol, no effect until I hit 2.5 mg when my pain went to 10 in exactly the spot where it had started 25 years earlier, my skull bones. I 'm still on Tramadol, lots now, but am considering trying ULDN as there is someone on my meds on an FB thread also trying it and I thought I'd follow that.
The shrooms scare me though they have a "good" safety record and supposedly have only temporary effects. The person I know said it was one of the top five profound experiences in his life and is flying back to Amsterdam to do it again in a week, just two weeks first his first trial. Wants me to go with him sometime. IDK...

 

[Cort]

Hi Cort,
I vaguely knew Pollan had written one but it had slipped into old age memory, will check my libe, thx.
I tried LDN years ago before I was on Tramadol, no effect until I hit 2.5 mg when my pain went to 10 in exactly the spot where it had started 25 years earlier, my skull bones. I 'm still on Tramadol, lots now, but am considering trying ULDN as there is someone on my meds on an FB thread also trying it and I thought I'd follow that.
The shrooms scare me though they have a "good" safety record and supposedly have only temporary effects. The person I know said it was one of the top five profound experiences in his life and is flying back to Amsterdam to do it again in a week, just two weeks first his first trial. Wants me to go with him sometime. IDK...

How about cannabis? Can really help with pain.

https://www.nytimes.com/2018/06/04/books/review/michael-pollan-how-to-change-your-mind.html

 

[Paw]

I've been using an alcohol-based CBD rub, which I find is only mildly helpful for myalgias, but significantly helpful for neurological pain and burning (if you deal with that). Haven't done mushrooms in decades, but I think they'd certainly be educational if nothing else.

 

[Steve]

I haven't been able to get MJ to work for me, spent hours researching, decarboxing, making and buying edibles, couch locked me but no pain relief. Tried infused pads and also had CBD massages and drunk a ton of the stuff, makes me a little fuzzy but also no pain relief.

I spent a lot of time under green lights of a certain frequency published by several AZ doctors, article not handy, no pain relief. I tried SAD level lights just a bit years ago but am going to follow this protocol from 2017 with two lights when my second light arrives.
https://www.ncbi.nlm.nih.gov/pubmed/27473633.

Running out of even novel treatment options.

 

[SuzyDee]

Look into nitrates for a novel neuropathic pain med. Not much around on the subject but one small study found GTN patches to be effective for diabetic peripheral neuropathy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665823/

All nitrates can help with pain via exploiting opening of potassium channels so oral ones such as isosorbide can do the trick too. Under the tongue sprays or sublinguals are too short acting in their action to be of much use though.

A potassium channel opener med that has been in clinical use as a nonopioid analgesic in Europe since 1984 is flupirtine. Retigabine (known as ezogabine in the US) was an anti-seizure med very closely related to flupirtine which was going to undergo clinical trials in the US for Fibromyalgia a couple of years back but I see this med has been withdrawn from market now and I don't know if the Fibro trial ever ever kicked off.

 

[Steve]

Thanks, will check out, though my PCP "managing" (i.e. keep taking your tramadol and Tylenol and look for another specialist LOL) won't prescribe nitro for me.
I followed the Pub Med study with ten female fibro patients using two SAD lights for a week. They got diminished pain, altered circadian rhythm, and other good effects, though to a limited degree. I had no benefits. This is also related to the neurohormone system, though, and all studies are done with females. no one knows if male fibro patients should receive similar treatments.

Dr. Gillis finally just got approval for his TB vaccine modification for fibro treatment after six years, as noted on his Facebook page for the FM/test. He was supposed to be ready to go when he got this but is a terrible communicator and organizer with his clinical subjects, who all paid or had insurance to get into the study, some six years ago. Anyone who achieved a certain level of cytokines on his blood test is supposed to receive the vaccine. I am not happy with the delay.

 

[SuzyDee]

Thanks, will check out, though my PCP "managing" (i.e. keep taking your tramadol and Tylenol and look for another specialist LOL) won't prescribe nitro for me.

Nitrates work via boosting nitric oxide (NO). Similarly, so do over the counter NO booster supplements like arginine, citrulline or even beet powder. These don't have the same potency or immediacy as prescription nitrates but in theory, should work too, probably more as a slow cumulative effect though.

Alternatively, tadalafil (Cialis) has some benefit as a pain med too. It has been used for renal colic pain too or another severe pain syndrome called Loin Pain Hematuria Syndrome.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2575214/

 

[Steve]

Ah, I've taken citrulline with no effect I could find and also add watermelon powder to my oatmeal every morning for same reason and antioxidants. As for Cialis, not only are the side effects unpleasant, the main effect is pretty pronounced and, personally, I would find it difficult to use merely for pain reasons. I didn't notice any drop in pain using it.

 

[Steve]

Bad family illness has kept me away for awhile but a friend just sent me this. Anyone have any thoughts? Wonder how different it is from Quell? I’m going to take their questionnaire. Results sound too good to be true.

https://radiantpainrelief.com/pain-relief-portland/

 

[Steve]

Back from three week “ scrambler therapy “ trial in OR. I had a lot of hopes for this one as I had talked to one of their FM pts who got great relief for months and just goes in for booster treatments. Apparently they have an eighty percent improvement rate, often “ cured”; for a variety of chronic pain conditions including CRPS and allodynia. Also a MayoCLinic doc interviewed had said he thought it was promising. After twenty sessions of being zapped with ten electrodes for an hour, twice a day for one week, I was demoralized to acknowledge zero pain relief, however. The other pt had experienced some relief the first session. It was expensive taking dozens of Lyftrides, hotel, meals, flights from East Coast etc. but I’m beyond desperate with pain at this point and if I die broke at least I’ll be out of pain. Maybe you just can’t medicate or retrain your CNS enough after 30 years. It’s also disappointing that no one else has tried and posted any other new or novel treatments here.

 

[Paw]

Steve that sounds exhausting. Bet you'll be recovering for some time.

Maybe a lot of us here tend to keep our heads down while managing our cycles -- since it can be counter-productive to keep pouncing on every shiny object. I do keep my eyes open for new things to learn and try, but, frankly, focusing simply on energy and pain management has been most helpful for me these past couple years.

In that vein, I've become a dedicated practitioner of qi management through breathing and tai chi. I too have debilitating FM, and the exercises are slowly giving me confidence that I have the resources to mitigate the pain and gain enough stability to get through necessary tasks. I like the practice because small amounts of concentration and effort can yield pretty big revelations and rewards.

 

[Farmgirl]

Back from three week “ scrambler therapy “ trial in OR. I had a lot of hopes for this one as I had talked to one of their FM pts who got great relief for months and just goes in for booster treatments. Apparently they have an eighty percent improvement rate, often “ cured”; for a variety of chronic pain conditions including CRPS and allodynia. Also a MayoCLinic doc interviewed had said he thought it was promising. After twenty sessions of being zapped with ten electrodes for an hour, twice a day for one week, I was demoralized to acknowledge zero pain relief, however. The other pt had experienced some relief the first session. It was expensive taking dozens of Lyftrides, hotel, meals, flights from East Coast etc. but I’m beyond desperate with pain at this point and if I die broke at least I’ll be out of pain. Maybe you just can’t medicate or retrain your CNS enough after 30 years. It’s also disappointing that no one else has tried and posted any other new or novel treatments here.

@Steve, you sound like me. This fall and last I ended up in daily pain and unable to function. After a few dietary slips over this last holiday, I just got really strict (again) with my diet, removing all known allergens (gluten dairy, peanuts, chemicals in foods, etc). I made the mistake of eating cheese yesterday and though it tasted good, it caused an increase in pain within hours in my joints.

I am stuck on Tramadol currently and it does not touch all the pain, so I add a Tylenol. I know neither of these is good for my liver, but I can't always consider my liver and kidneys when I am extreme pain.

Can you function a few hours a day? Did your trip throw you into a crash? Where is your pain and
what does it feel like? Is it constant, increasing each day? Do you wake with pain? FG

 

[Steve]

Hi Paw and Farmgirl, thanks for posting. I hope I didn’t sound critical of folks for not trying new stuff and letting us know, not my intent. I’m in dreadful pain pretty much every minute and I am desperate enough and have enough resources to chase most “ shiny things” but none have worked. I’ve had fibro 30 years, the last six hell, no remission, only remember two mysterious days of pretty good diminished pain, that’s it. I have found no med, supplement, diet, chinese energy practice (Qi gong, tai chi, acupuncture), yoga, etc, etc. to do anything but sometimes increase pain. I try to do 20 minutes of low aerobic/resistance exercise daily but have slacked off to 15 due to pain .The pain is full body pain and also many specific areas which change in type of pain and intensity almost minute by minute. Yes, it has increased greatly over the six years and now affects me when I try to sleep. Lying down reduces it by 10% and when I can’t stand it, in cold months, I lie down with an electric blanket turned up near max. Does it help...we’ll, maybe another 5%. Getting out of bed is really hard in the AM and always unpredictable, sometimes getting up and feeling awful and getting worse, occasionally feeling not too bad and getting worse, always ending up in pain.I take 350 mg tramadol and 1950 mg Tylenol and always worry about liver damage as I’m 70. Does it help...I tell my pcp it’s like being stabbed with a five inch knife instead of a six inch knife. BFD but better than nothing. I used to use pain a number at the end of each day but I started a color system in Portland, doesn’t really matter as I have felt both terrible and less pain on humid days, cold days, etc. Einstein said God doesn’t play dice with the universe but he does with my fibro pain, seems totally random in location and intensity. I have been able, largely, to avoid getting depressed because I survey pub med and other places for novel or developing treatments and as long as there is something else to try I have hope. I've run out of everything except a clinical trial I’ve been waiting two years for, though, and floatation tank treatment, which i’ll try when I have to travel in a few weeks as it’s near my hotel. I’m not feeling too upbeat at this point.

 

[Paw]

Steve, I feel for you. And for me. I'm a bit younger, but as I watch pain find creative new avenues in my body year after year it seems I'm headed your way. For now, I still get relief lying down -- maybe in the 40% range. But then comes the swirling neuropathies and burning....

Anyway, I too worry about my liver. But for now I do find it useful to keep alternating treatments -- which sometimes amounts to little more than shifting focus temporarily. I know duloxetine is scary and controversial, but I am confident is cuts my widespread burning in half. Cannabis isn't always great for pain, but it can help with rest -- and at least makes the pain a little more interesting. I take kratom once a week (but still worry about its impact on my liver) -- just to get a little opiate-lite relief. All in all, getting off my feet as soon as the body signals is certainly the best management I have -- but those first signals come quicker and quicker as each month passes.

Flotation will be interested. I did that a few times in the early 80s. Maybe it'll help you become aware of some intricate flow problems in your body. Should feel good anyway. Good luck.

 

[Farmgirl]

Hi Paw and Farmgirl, thanks for posting. I hope I didn’t sound critical of folks for not trying new stuff and letting us know, not my intent. I’m in dreadful pain pretty much every minute and I am desperate enough and have enough resources to chase most “ shiny things” but none have worked. I’ve had fibro 30 years, the last six hell, no remission, only remember two mysterious days of pretty good diminished pain, that’s it. I have found no med, supplement, diet, chinese energy practice (Qi gong, tai chi, acupuncture), yoga, etc, etc. to do anything but sometimes increase pain. I try to do 20 minutes of low aerobic/resistance exercise daily but have slacked off to 15 due to pain .The pain is full body pain and also many specific areas which change in type of pain and intensity almost minute by minute. Yes, it has increased greatly over the six years and now affects me when I try to sleep. Lying down reduces it by 10% and when I can’t stand it, in cold months, I lie down with an electric blanket turned up near max. Does it help...we’ll, maybe another 5%. Getting out of bed is really hard in the AM and always unpredictable, sometimes getting up and feeling awful and getting worse, occasionally feeling not too bad and getting worse, always ending up in pain.I take 350 mg tramadol and 1950 mg Tylenol and always worry about liver damage as I’m 70. Does it help...I tell my pcp it’s like being stabbed with a five inch knife instead of a six inch knife. BFD but better than nothing. I used to use pain a number at the end of each day but I started a color system in Portland, doesn’t really matter as I have felt both terrible and less pain on humid days, cold days, etc. Einstein said God doesn’t play dice with the universe but he does with my fibro pain, seems totally random in location and intensity. I have been able, largely, to avoid getting depressed because I survey pub med and other places for novel or developing treatments and as long as there is something else to try I have hope. I've run out of everything except a clinical trial I’ve been waiting two years for, though, and floatation tank treatment, which i’ll try when I have to travel in a few weeks as it’s near my hotel. I’m not feeling too upbeat at this point.

@Steve
Laughing out loud as I sit under my electric blanket reading this!

More response when I get done reading and processing your post.
You are not alone, Steve. That doesn't help the pain, but maybe helps your heart.

 

[Steve]

I do promptly read your posts because I do get some feeling of support knowing others are having the same experience and appreciate everyone’s comments. I am not sure how to respond, though, as my quality of life is so bad that I don’t want to just post complaints and utter pessimism. I always wonder how people get through the day with severe pain and, increasingly, what my limit is. Cort does a great job in tracking down and relating in a comprehensive manner the latest research, such as it is but...it’s almost all just basic research. The treatments are , .IMO, throwing mud at the wall and seeing if any sticks. I think frequently about my exit strategy and when is it just time to go. My wife is tired of hearing about all of this and I don’t blame her. The combination of severe pain and tramadol side effects on my 70 y.o. body has greatly degraded my ability to enjoy life in several important ways and, while it barely works, I have nothing else.

Amusingly, I have a medical appt Wed to f/u a blood test irregularity that is probably bogus. My pcp, of only a few years, used to keep saying my quality of life is not good and I should see a specialist. After I’ve seen a number of them, he doesn’t bring it up anymore because we both know they can’t do anything new, though I am always on the lookout myself for “ novel treatments”.

Time to crank up the blanket (should be issued to every fibie), arrange the tramadol and tylenol and timer so I can find them around 3 or 4 AM, and put the generic Ambien (says China or India) nearby if I need it to get back to my spotty sleep. Hasta la vista.

 

[kamodio]

Steve, I appreciate the “amusingly” re your medical appointment. So sorry about the profound and unrelenting pain. It’s exhausting. Here’s one to not try: infrared sauna. I just did three half hour sessions, one every other day, and while it did seem to temporarily give some relief I am now so wiped out and fuzzy brained I’m not sure this will even make sense! Next up, a bio mat with infrared and PEMF and ‘healing gemstones’. Sigh. 45 days to try it and then can return. One friend swears by hers but it’s not clear what her thing is, ie fibro or CFS or something else.
Cbd oil did help with pain, I didn’t know how much until I stopped! Had to stop because, of course, I am one of the few people who got knocked down with canabinoid hyper-emesis reaction and I am not ever going to go through that again!
Okay, so, the flotation? How was that? How about cryotherapy, which sounds awful actually but who knows.
Please don’t give up!

 

[Steve]

Hi Kamodio,
Jeez, great minds think alike...or desperate folks all end up trying the same fringe treatments. Hilariously, I was just deciding whether to buy this cheapie two hundred buck FIR sauna on Amazon that looks like a cartoon joke or go to a somewhat close gym and see if I can enroll for only a month to try their
FIR sauna for a few times a week. I was also looking into a bio mat and for a PEMF helmet! I try to exactly replicate the few and sometimes iffy novel journal studies I find. The 2008 (only one, I think,) sauna study was pretty impressive, with 17 Japanese women they treated who had great results. You need a pretty powerful treatment to get the level of (almost, missed by .01) statistical significance they got. They were also wrapped in 75 F degree towel for an hour, I think, after each treatment, something I might have trouble doing in the spa, Using my trusty radartemp gun, I find that my electric blanket is 74 at a 5 setting! I worried about emf radiation from the sauna but a fellow Health Rising contributor suggested not to worry about it. I have actually been in this type sauna once, last week when I had to go out of town on a rare trip. The spa woman offered it to me as a consolation prize because I had paid for 90 minutes of flotation tank and quit after 60, will relate next. Unlike my one time in a steam sauna, I didn’t find the dry sauna unpleasant. I didn’t have any cognitive effects but i was only there a half hour. Maybe that is an idiosyncratic response you get? I’m going to try it because I have no more treatments.

My problems with the float tank was not the dark, tho you can keep light on, or closed-in nature, used to spelunk, but the feeling of my head drifting up and down in the water over my ears and higher. I wore swim goggles and ear plugs I brought but I’m a bad and fearful swimmer, have always been afraid of drowning. It is virtually impossible in the tank but, with a large part of the back and side of my head somewhat bobbing around on the plastic neck float, I kept tensing my legs and stomach so hard it was a useless trial. I was very disappointed but there’s no way I would be able to overcome that fear, even if I found a pillow that would raise me a bit higher. I had a lot of hopes for that one also.

As for the PEMF, I haven’t been able to get the original journal article yet and see who made their undoubtedly expensive helmet. I think Osaka is a PEMF, not sure, never tried, small, maybe you could get several put them in motorcycle helmet or something, depending on frequencies, etc., etc., just thought of that while writing. I also know several EE’s, might consider contracting them to make one if I get parameters. I’m not giving up yet but I’m getting more desperate, just bought cbd oil again to try at much higher dose to see if it works.

Cryotherapy sounds awful, I hate cold on my skin, tried the Wim Hof breathing / ice bath technique briefly, not just cold, horrendously painful after brief immersion, couldn’t put more than leg in to try. Nothing else left that i know of.