Suggestions for Fibromyalgia type symptoms

[capefibro]

Thanks again for your informative and thoughtful post, Bob. When you have a chronic pain syndrome like fibromyalgia, you are like being in the wilderness with your compass going in circles. You can find research, such as it is, from each person holding on to a different leg of the elephant and hypothesizing what is causing pain and what should be done. Wildly disparate theories abound but none of the meds or devices that result from these theories have worked for me.

My only experience with whole body PEMF was in a sports rehab setting, one half hour in a chair with a Bemer mat, I think, several years ago, in NYC, up so many flights that it would have screened out some people with chronic pain LOL. I didn’t feel any effect but I don’t consider a fair trial. So, considering your input, I have on order a full body PEMF mat from a place called OMI, Oxford Medical Instruments. It seems to have multiple settings and the company has been selling these for a decade. It has a 30 day trial and a three year warrantee. My science background is not only 50 years old, it was not focused in physics. In thirty days I should have a good idea of whether it works for me. The price of about $1300, including several smaller devices for specific body use, strikes me as reasonable. If it works for me, of course, I’ll pay anything and I’m fortunate that money is not the determining factor of receiving treatment at this time. The science behind PEMF, as I understand it, is impressive, and the non invasive nature is very attractive. If this doesn’t work, I’ve been looking into wacking my body with ketamine infusions, a terrifying thought but it has worked for some people. Others have not had a good time.

Again, thank you for your thoughts. IMO, medicine and public policy have not addressed two human universals, pain and sleep, to the degree that our species needs to cope with being alive. Their management is left largely to the individual, subject to both information and legal barriers.

I will discontinue my rant and report back on the effectiveness of the device, which is arriving this week.

[Bob]

thanks. I really hope this works for you. Please do report back to give us your 30-day trial review.

[capefibro]

Bob,

Thanks for your good wishes. As a scientist, as I start my trial here, I also tried to find past PEMF fibromyalgia research to get some advice on frequencies. There is virtually no research, of course, except for a short study in 2008 by some smart folks who differentiated well between nociceptive and central sensitization pain. They opted to use cranial PEMF at 1000 hz just above the ears with headphones twice daily. This was at 400 micro Tesla, not in my ability to measure, I think. They did not try whole body PEMF. This figure is very much lower than the suggested 18 hz suggested by the body wide folks whose mat I’m trying, as well as a head ring whose frequency is also adjustable. I have no idea where they derived their frequency suggestion from.

I continue to find the A1 at Omni 8 protocol helpful for my trigger finger but, using it in the head cap, was not able to discern an effect on pain. I am in continual worry that using the wrong frequency and/or wrong cranial placement will lead me to draw a false conclusion if I find my trial ineffective. In your studies and travels, have you found any frequencies that you would suggest might be helpful for fibromyalgia, both used at the cranial site and body wide? Thanks for any thoughts. Steve

[Bob]

My opinion: fibromyalgia is mostly peripheral derangement and inflammation of peripheral fibrous tissues, so I treat it accordingly.

I think for fibromyalgia, the frequencies of interest are the ones embedded in our standard ICES-PEMF pulse waveform. So, this is not a parameter you can adjust on our devices.

As far as pulse rate (p.p.m., or “Hz”) is concerned, my data and my own personal experience with fibromyalgia suggest that you want the highest dosage of ICES-PEMF, where dosage is a function of:

Pulses per second (I suggest ~15 - 30)
Duration of use (at least 6 to 8 hours per day, and all night also if possible)
Frequency of use (daily, or multiple times per day)
Intensity (H or X)

Basically, the more pulses you can get every day, the better. From a practical perspective, I suggest you consider something in the 15-30 pps range, maybe alpha-wave for example, or Beta1.

You should apply it for as long as possible every day, on H or X intensity setting (for the A9). Change batteries frequently, about every 2 hours, to get best effect.

MOST IMPORTANT: fibrymyalgia is about the most difficult to treat, so you should expect to persist this way for at least a month to 6 weeks, or longer. Then you should start to see effects. Then, when symptoms subside, continue use for at least 2-3 weeks to facilitate complete healing.

[TajD]

As an aside, a family member had trigger finger in each hand and daily use of ICES PEMF on Omni 8 for 8 hours for 3 weeks fully resolved the trigger finger issue. That certainly beats the doctor recommended surgery which we didn’t use / or need to use after diligently using ICES PEMF.

[capefibro]

Many thanks for reply and helpful info. It’s apparent I’m not using my M1 for long enough time to really change things. I will try to up to 8 hours but defunct battery charger has meant that I am stuck to wall use, will get new charger, third one.

[Bob]

Think of it this way:
ICES-PEMF is fighting to reduce pathologic inflammation to allow natural tissue recovery, so it needs to be done long enough every day so that recovery > damage from inflammatory processes:

-If you use it for 10 minutes a day, you are letting the inflammation dominate for 23 hours and 50 minutes every day.

-If you use it for an hour every day, inflammation still gets to dominate for 23 hours every day.

-If you use it for the recommended 6 to 8 hours every day, then that seems to be enough to tip the scales in favor of healing and recovery, even though inflammation dominates the rest of the day every day.

6 to 8 hours is long enough to tip the scales in your favor (toward recovery), but even longer use every day tips the scales in your favor even more.

[capefibro]

Thanks, Bob, that is a helpful perspective that somehow eluded me. I just ordered a new charger so I am not limited to wall use and can increase my PEMF time while walking around.

Here’s an interesting anecdote that happened to me five years ago when I was sequentially trying every med, supplement, technique, etc., that might reduce fibromyalgia pain. It changed my way of thinking about things though has not changed any medical outcome thus far. I had requested a Lyrica trial although I knew the med was highly anticholinergic, had nasty side effects, was not very effective, and had a very low compliance rate. I had no expectations of it working for me. I took the first dose, went to bed, and woke up the next morning cured. Not better, cured, not only with zero pain but with the mood and energy of a 25 y.o. who maybe just got a Harvard acceptance letter in his mailbox. I walked differently than a chronic pain patient, stood differently, and looked different than a chronic pain patient. It was like someone sprinkled pixie dust over me. My wife happened to be home and was as stunned as I was. It seemed like a miracle and it lasted six hours until the pain started creeping back and I returned to what I am. I realized this was my first and only experience with the placebo effect that I had read about in psychology. (I’m a retired clinical and research psychologist with heavy doses of bio and chem, not so much physics.) It was like someone had turned a switch in my brain that made me perfect. That was when I started thinking that there was a central sensitization brain injury that, if I could only locate it, cross the blood brain barrier, and rehab whatever damage was there, my life would be changed. Hasn’t happened yet.

As for Lyrica, as I took the doses that day, I began to become confused and disorganized, essentially demented to where when I foolishly drove us from home to a restaurant, I almost killed us by swerving around the car stopped at the red light in front of us because he didn’t move fast enough when it turned green. My wife drove us home and that was the end of my Lyrica trial, similar to that of others’ I later found.

[inga]

I don’t find a reply on the 30-day trial of the OMI mat, and I’m really interested, since I just got one and am thinking of returning it. (See my other post)

[capefibro]

Hi Inga,

I got the OMI mat, small mat, circular head ring, and “free pendant”. Do they work? Are they quacks? IDK. The only person inPEMF I trust is Bob Dennis and he doesn’t make a body mat. I use his M1 to control my trigger finger and work on tendon injuries. I tried to use the OMI mat at 15 hz three times a day but getting on the floor, like your husband, is agony with fibromyalgia. I probably have gone over the return limit but that’s the way it goes. I don’t know why they say don’t sleep on it but since I own it I may try it anyway, if it kills me at least I’m out of pain. I can’t worry about money now as my fibro symptoms are so severe. I’ve been on suboxone, a nasty opiate that stopped working and am now in astounding pain every day. I hope you have better luck.

[inga]

The pendant seems pretty useless to me. It’s just one coil, like the ones in the mat, I assume, but it’s bulky, compare to the M1, and it’s also no stronger.

Upon advice from customer support, I did put the mat on my bed, under a padded mattress cover. (A 1" foam cover would probably be better.) I do seem to sense some positive effect. What annoys me is that no program is longer than 30 min., and there’s no reason for that limit, since the coils are not particularly strong. (Claim is 2.2 Gauss.)

If I were you, I’d put it on my bed, under a pad. The advice not to do that is for the safety of the mat, not the patient. It’ won’t hurt you.

I’d use the P3 program at 18 Hz or so (generally recommended for fibromyalgia) and alternate it with P1. (I think P2 is useless because it randomly alternates Hz from 1 Hz to 99 Hz.)

@Bob Dennis doesn’t think there’s much to the idea of a specific frequency for a specific condition, if I read him right. So to hedge your bets, I’d use the P3 at 18-20 Hz, as recommended, and alternate with the P1 program which goes from 1 Hz to 30 Hz, I believe.

I think a lot of folks would be interested to read if you feel any different.

[Please excuse the duplicate posting. This just appeared under this topic, which seems more appropriate than the original thread.]

[Bob]

My main concern is when marketers make fraudulent claims, often involving “special secret frequencies” that they are willing to sell to you. That kind of nonsense is just fraud, and has no scientific basis.

I do, however, think that the frequency (more properly, the “pulse rate”) does have some level of biological significance, but less so than waveform shape, which I discuss extensively elsewhere. And to the extent that “frequency” is of biological importance, it will generally be beneficial over a fairly broad range (such as 18 to 20 Hz), but will generally not depend at all on any high level of precision. No one has ever shown, for example, that 10.000 Hz is any different in biological effect than 10.001 Hz. Or even that 10 Hz is different from 11 Hz. Nothing that precise has ever been reliably demonstrated for PEMF.

[capefibro]

Hi folks, I’m still here, did not have good test of the OMI pad over time for several reasons so I can’t talk about its usefulness for body wide FM pain. Also did not consistently use the circular ring or pendant. I’ll try to set up the mat for bed use at night but there are hassles here doing that.

I have been using the M1 on ulnar nerve pain and trigger finger while I figured out what to do for my FM. It is taking a good deal of time for them to resolve and then the M1 died…

I just got my M1 repaired (real quickly, thanks!) and have become focused on also using it on my brain, with my own research suggesting that inflammation in the HPA axis is present in fibromyalgia. A year ago JillLash posted how she used the C5 on her spine ganglion but that apparently has more leads than my M1 so I will use the little PEMF hat I got years ago to either try to hit the HPA axis bilaterally or doubled up, depending on how I can get it in there. My suboxone is barely working and I’m being evaluated for IV ketamine in a few weeks, the last med I can find that might work and not one i am looking forward to trying. Some positive published research with it, though, and no choices left. Fibromyalgia has pretty much destroyed my life over the past decade and there is no way I can deal with it without some pain reduction at the level it has become.

Any further thoughts on cranial placement or parameters are appreciated.

[Serenity]

I have a friend who was diagnosed with fibromyalgia many years ago, but wouldn’t take anything to treat it. Instead, she created a strong exercise regimen that included qigong exercise and meditation to help her manage it. I’m guessing her condition was mild compared to yours, and she tends to be very stubborn and resistant to suggestions I made until about two years ago when she was diagnosed with pancreatic cancer and given three months to live.

Previous to her cancer, I had suggested heat therapy to deal with her pain but she rejected it.

For the past 20 years, I suffer from neuropathic pain that pretty much ruled my life until someone introduced me to an alternative medicine modality known by the acronym YSD (short for the Chinese name Yuanshidian), lesser known by its English translation, origin point medicine (OPM) or origin point therapy. The nonprofit organization that offers free workshops (and treatment) was originally established by a TCM doctor (traditional Chinese medicine) in Taiwan seeking to treat his wife who was fourth stage cancer. He was too late in saving her but he made it his goal to spread his teachings of the modality to help others suffering from chronic pain, illness and disease. Now there are YSD centers all over the world all run by volunteers who train under him and he continually updates his research on improving treatment.

YSD operates on the theory that the human body needs heat to promote circulation and healing. Since core temperature is around 37.5 degrees Celsius, healing requires increased circulation for the body to recover from trauma and illness. So YSD uses different techniques to promote circulation, one of them being heat therapy through application of devices such as heat pads, warming mats and a diet of “warming” foods (that promote heat and circulation). They advocate consumption of organic ginger in all concentrated forms (extracts, “soups” and cooking). And there is a form of massage known as “antui” which they apply on particular “origin” points, not quite trigger points but points from which the pain or problem originate. YSD gives free lessons and workshops on how to apply their modality, and they sell organic ginger and other products to members using their treatment, in addition to offering free antui treatment to those in need. They have been around for almost 20 years now and have centers all around the world, including several in the United States and I believe three in Canada. Membership, workshops and therapy are all free.

When I joined, I was suffering tremendous pain and when they first did the antui on me, I almost went through the roof, it was so excruciating. But after a week or so of treatment, the pain started to subside and now, except when I’m exceptionally tired, overworked, especially during cold wintry damp conditions, I barely notice any pain. I learned to do antui DIY which is what YSD encourages of their members, but I don’t have to do them as often as I did before.

You don’t have to adopt all of YSD healing principles to make it work for you, but I think heat is the most important. You won’t necessarily notice immediate results – it took me several months to see significant improvements in pain reduction, but what have you got to lose? There aren’t any negative side effects and the potential benefit is there, besides improving overall health.

Make ginger part of your diet and include it in every concentrated form for consumption (YSD even uses poultices made from organic ginger paste). Invest in a wellness mat that you can lie on overnight with a minimum setting of 42 degrees Celsius. I have a discount membership from Healthyline that sells wellness mats with thermostats you can set anywhere from 0 to 70 degrees Celsius — I love the fact that I can adjust the settings to have the mat stay heated through the night. It’s infrared heat which penetrates deeper into the body without burning you, very effective in treating pain.

Healthyline also sells PEMF mats at cheap prices too, but I don’t find them very good at all, so I would not recommend buying that extra feature.

When my friend was diagnosed with cancer and started chemo, she suffered horrible neuropathic pain. Her brother bought her a Healthyline mat which she stubbornly refused to use because she said heat would give her hives. I told her she had to punch through this side effect, but it wasn’t until the pain from her chemo became intolerable that she decided to give it a try, starting with just an hour a day and slowly building up until she could sleep on it overnight. Nevertheless, even though heat therapy had reduced her pain, her cancer had grown and they were now using even stronger drugs in the second chemo which had greater side effects.

At that point, she finally listened to me when I suggested PEMF would help. She invested in an IMRS mat and found aside from losing her hair, it helped eliminate all the neuropathy and other harmful side effects of chemo, but amazingly, her symptoms of arthritis and fibromyalgia all disappeared as well.

It’s been two years now since her first diagnosis. Her doctor gave her three months, and was amazed that despite the growth of her cancer, she doesn’t show any sign of deterioration nor has she experienced any more pain. Just keep in mind not all PEMF mats are created equal. While I believe the IMRS produced a quality mat that has really saved my friend from a lot of unnecessary suffering, it has certain conditions that really limits where you can place it. Unlike the Sedona mat I have, the IMRS can’t be placed on the bed; my friend places it on a carpeted floor as it has to be a hard surface. She also says she can’t have any electronic devices or telephones nearby (at least six feet away).

One other thing: I’ve considered the Omi, but before buying it, I was so turned off by the salesman, I opted for another brand instead. I agree with Bob, that from my experience, the PEMF mats don’t work as well as the coils to treat regional pain, but when it’s fibromyalgia, you’re treating pain that affects the entire body and you don’t know where it will attack next, probably the PEMF mat will do better for you. And looking at how my friend responded to her mat, I also realize there is a wide range of qualities when it comes to PEMF mats.

I do hope these suggestions help you. I’m just sorry I didn’t see this entry until now and that you had to put up with your pain for so long.

[capefibro]

Hi Serenity,

Thank you for your concern and detailed letter, full of several interesting thoughts and concepts. First, I hope your friend continues well with pancreatic cancer;it was a terribly difficult time for my father, mother, and myself.

My qi gong master, skilled in a number of arts, did not mention YSD and I have never run across it in my admittedly forays into Chinese medicine. While I entered the practice of qi gong, as well as acupuncture and Chinese herbal treatment, with considerable optimism, after a good deal of practice and treatment, I’m afraid that I’m much less hopeful that they can be of help to me. I will explore the YSD options, though, as well as their use of heat and ginger, a spice I, unfortunately, don’t like much. I’m sure I can tolerate eating ginger rather than fibromyalgia pain, though.

I’m still very interested in PEMF and find your observations about whole body mats and treatment helpful. The requirement of using the OMI mat (which I now, unfortunately own) on the floor is a tough one for me but I will restart my use of it at their suggested figure, 15 if I remember, again now that I am getting a bit of relief from suboxone and can probably lie down for a bit. I wish I had heard of the Sedona mat and will look into it. A mat I will use is better than one I can’t, though I hate to buy yet another without some hope it will work. I also own the circular ring from OMI that I tried for about a month around my head. I suspect it might take some time to have an effect from a mat or ring but can’t find any information about that.

I tried an at home infrared sauna for 45 days with no pain reduction and use an electric blanket at high heat nightly but considerate it help with comfort rather than pain too much. Maybe YSD has specific methods as well as temperature.

Please let me know if you have any other thoughts about fibromyalgia treatment or PEMF use. I’m continuing to use the M1 locally for trigger finger but with modest success. It just occurred to me today that I would like to try it for prostate hypertrophy which is causing me great difficulty. I need to figure out how and where to place the coils and will see if anyone else addressed this on this forum; perhaps Bob will comment if he sees this.

Thanks again for your letter and concern; I will keep in touch on this forum.

Capefibro

[Serenity]

Yeah, until several years ago, I never heard of YSD either and I have trained in tai chi qigong for more than 40 years now. My master was a friend of the family who is a TCM doctor and has never heard of YSD either.

To clarify, YSD is not TCM; they don’t advocate anything invasive, no surgery, no acupuncture, but the some of the principles are loosely based on TCM in terms of “hot” and “cold” or yin/yang. In some ways, it’s much easier to learn than TCM (I have studied both, though I wouldn’t consider myself an expert in either).

YSD is effective as an alternative health modality, but I don’t believe it’s a cure-all. On the other hand, I’ve seen some amazing recoveries due to YSD, even people in the last stages of cancer. It seems YSD works best on chronic illnesses: I’ve seen two people recover from cancer when western medicine couldn’t treat them, one practitioner recovered from his diabetes, and I myself recovered from a heart attack (no surgeries and no drugs), in addition to their helping me reduce 80-90% of my pain. So I am deeply grateful for their helping me and improving the quality of my life, but I don’t believe in everything they do. YSD practitioners have an all or nothing attitude: if you want them to treat you, they will insist you can’t take drugs (not even the covid vaccine or the boosters that I took); you practice only YSD and nothing else. For this reason, I don’t talk to them about the herbs or vaccines I take or other alternative health practices I do, although they are not opposed to PEMF which they are well aware I use.

As for ginger, I never liked it at all and initially reacted very adversely to it (it worked on me like a stimulant and I would become very hyperactive with consumption), but I was told to “punch through it” and I thought to myself, what did I have to lose, I was in so much pain 24/7. Not only did I become very hyperactive, but also very constipated and broke out in sores for several weeks, after which I went the other extreme and had major diarrhea for a couple of weeks before everything eased.

Since I broke through, I’ve been drinking very concentrated “ginger soup” every day now for the past several years, and when I miss a day, the inflammation and pain immediately comes back. Fortunately, I’ve learned to “enjoy ginger” if not love it. I guess when you’re desperate, your taste buds do change to accommodate your needs!

Just in case, here are a couple of links on YSD, if you want to find out more about it:
Website (run by some volunteer practitioners): https://origin-point-medicine.org/
Video instruction on “antui”: https://www.youtube.com/watch?v=7SEOa2K3Wtg
I didn’t bother giving you the official website which I find is not as well organized as the one run by practitioners in Malaysia/Singapore.

Regarding the Sedona:
Yes, Franz, the Sedona manufacturer, does provide good service – he personally answers all my email regarding the protocols (there is an accompanying manual but he adds his own helpful information too). And Sedona is the only company that offers a lifetime warranty if anything goes wrong. It’s this and all the excellent reviews I read online that made me decide to invest in it – I figure anyone who offers a lifetime warranty must be pretty confident in his product.

But I will be honest with you: Franz has offered me a commission if I recommend anyone to buy his mat. As an incentive he said he would provide free delivery for people who mention my name, which he did not offer to me at the time of my purchase, (and shipping was very expensive on top of the price of the mat).

Just like you, I experienced pain in almost every part of my body (not as bad as yours but still enough that I couldn’t see myself continuing down that road), and unfortunately, for me, painkillers did not alleviate my pain at all — it would get so bad sometimes, I would get muscle spasms and cramps in places I didn’t even know had muscles!

Again, while I’m being forthright with you – unfortunately, I didn’t experience the quick relief I expected from lying on the Sedona. Instead of several weeks, it took me more than a year to feel significant improvement. Mind you, it took me an unusually long time in seeing the benefits of the M1 too (several months compared to my friend’s husband who experienced it overnight) for depression and eczema, so I think my body may be just plain stubborn. The only thing I can say about my chronic pain is that having it for so many years has made me become extremely tolerant of pain.

Not to say the Sedona was totally ineffective, as I don’t know when, but at some point, I found I had stopped feeling the sharp pain in my knees and other parts of my limbs, and I can now bend down to tie my shoe laces (which I couldn’t do before) and I can sleep through the night without moving every 10 minutes due to pain in my shoulders, back and legs.

So will the Sedona be more effective on you than it has been for me? I can’t really say. Maybe because my issues are not bone related, but due to nerve damage, I need lower intensities. Sedona has some very high intensity settings.

I do think you should give the ginger and Healthyline warming mat a try, as they don’t require as much a financial investment as the Sedona. They won’t provide a cure, which the Sedona might, and the Sedona may give you faster results than it did for me. But for me, the ginger and Healthyline wellness mat gave me much faster relief from pain to the point that I don’t need as much them as I did before.

My issues are very different from yours and I don’t know if we could really compare the effectiveness of treatments here, but I feel you need to look at all your options. Maybe try out the ginger and heat therapy first because they’re more economical… before or even if you decide on purchasing the Sedona at all.

[capefibro]

Thought I would be notified with new posts here but had set wrong so a week late.

I recently had a lot of ginger in a recipe and realized I could never eat a lot of it unless told it was necessary to imminently save my life. Just the way it is.

I have a warming/vibrating mat I’ve used a few times so will try that if I want warming. I’m trying not to duplicate purchasing similar gadgets of different brands. That said, I just bought the Omnipemf mat on sale to try. Maybe odd because I’ve never had any effect from the modes from their semicircular model that I have owned for a few years but they have upgraded the number of modes. Also, I wanted something to sit or lie on and they designed this so that’s ok, even though it’s not a body size mat. I have some prostate problems and will be trying the M1 and this mat to see if they help. I’d really like to get the Physiomed Magcell that was successfully used in a study but it looks like you can’t buy it or get it sent into the U.S., always annoying. One possibility is to fly to Canada and pick it up and bring or mail back but I need to be sure that all the variables involved would work.

This is the second device permitted in other countries I’ve wanted, the first being a self inflating bike helmet from Scandinavia, problem solved by fibro pain getting so bad I haven’t ridden bike in five years probably. Other one was a brain zapper from Europe but there was a chance it would get authorized here eventually. I have tried AlphaStim amd a bunch of other exoensive zappers with no success so I lost track of that particular one when I discovered pemf and ICES, with better data and support, though I have not successfully used the M1 for brain zapping fibro either yet, unfortunately. That’s my current project in addition to prostate stuff. I actually would like to try hyperbaric but have not been able to find one to try;good data from Israel for FM pain but experimental, I think, not sure offered as a program. And on that note…