The National Institute of Health (NIH) is easily the biggest funder of medical research in the world. Many research groups depend on the NIH for the majority of their funding.
Health Rising’s recent review of NIH funded studies on chronic fatigue syndrome revealed a small (14 studies underway) but rich list of studies. From an analysis of the gut microbiome, to the effects of exercise on the immune system, to studies on Epstein-Barr virus infection, to cerebral spinal fluid studies, the NIH was looking hard for the cause of ME/CFS. If the NIH isn’t funding ME/CFS much, the studies it does fund are focused strictly pathophysiology.
The NIH is taking a very different path with FM than it is with ME/CFS
The fact that not one treatment study was funded suggests the NIH is still floundering in that area.
The opposite picture is present for FM. The NIH is placing very little emphasis, at least this year, on trying to understand why or how fibromyalgia occurs (5 studies) but is more focused on treating it (14 studies).
Lackluster Attempt at Understanding Pathophysiology
Fibromyalgia is the sole focus of only three of the (only) five pathophysiological studies the NIH is funding. Two of the studies (immune study, SFN study) focused purely on FM could conceivably produce a breakthrough in our understanding of it. The other three studies (placebo effect/cognitive processing) are decidedly ho-hum matters.
The NIH did fund a small nerve fiber (SFN) study but with @40% of FM patients having SFN it was surprising that three or four studies weren’t being funded. With so many intriguing central nervous system findings it was remarkable, as well, to see the NIH funding only two pure brain imaging studies – one of them very small.
A Mind/Body Alternative Medicine Approach to Treatment
A strong focus on treatment would seem to be good news. Treatment should be, after all, the end result of research. Unfortunately the NIH’s treatment studies don’t fare much better. Half of the NIH’s treatment studies are on mind/body approaches to FM (CBT, emotional processing, MBSR, Tai chi, placebo). Several more studies focus on alternative approaches to FM such as acupuncture, blue green algae and Chinese medicine.
Mind/body and alternative health approaches dominate the NIH’s approaches to treating fibromyalgia
Past studies have shown these approaches can be helpful, but are they effective enough for the NIH to put most of its eggs in the mind/body basket/alternative health basket? Apparently, fibromyalgia’s home Institute at the NIH, NIAMS, thinks so. It is funding studies on propanolol and TENS, but is putting most of its money on behavioral approaches to FM (4/6 studies) to treatment. It’s not putting a dime into understanding FM pathophysiology.
NIH appears to be more reinventing the wheel in the treatment arena than moving forward. Dan Moricoli’s and other mind/body recovery stories attest to the fact that that these practices can be effective in the right person. Still no less than five yoga, four MBSR/meditation and ten Tai Chi FM studies have been done in the past five years.
This doesn’t mean the NIH is not funding good studies – it’s just not funding enough of them. The etanercept and propanolol studies could open new windows on treating FM. Finding that either an autoimmune drug or a beta blocker is helpful in FM would be news. Assessing the long term effects of opioids in FM is important given the many FM patients using them. We all want to know more about small fiber neuropathy and finding a immune trigger for chronic pain would certainly open doors.
ME/CFS may not be funded as well but many of the ME/CFS studies could result in legitimate breakthroughs. The same, unfortunately, can’t be said for most of the NIH’s FM studies. That’s a real surprise given how rich in possibilities the FM field is.
It’s possible that NIAMS is simply blocking; i.e. not funding studies on pathophysiology but it’s not clear whether these studies are not getting funded because NIAMS is not interested – or if the research field is simply ignoring FM? Note that the neurological institute (NINDS) is funding half of the pathophysiological studies while NIAMS, as noted earlier, is funding none. Assessing the number of FM grant applications forwarded to the NIH would be a good place for advocates to start figuring out what is going on there.
Active NIH Funded Studies in 2015
Biological
Wanted: Patients In All Sorts of Pain – An Immune Pain Study
No moderate pain patients allowed. One part of this study requires participants to have at least three of the following disorders: temporomandibular disorder (TMD), episodic migraine (EM), vulvar vestibulitis syndrome (VVS), fibromyalgia (FM), and irritable bowel syndrome (IBS) – to participate.
They believe that miRNA’s are activating an immune receptor (involved in infection interestingly enough) TLR8 and a protein complex called NFKB, known to enhance the pro-inflammatory cytokine response. Ultimately this research could lead to immune based therapies for chronic pain. Who can we thank for this study? People with TMD – the dental institute is funding this study.
- Funding Institute: NATIONAL INSTITUTE OF DENTAL & CRANIOFACIAL RESEARCH
Small Fiber Neuropathy in Adolescents with Chronic Widespread Pain
Just one fibromyalgia small fiber neuropathy study?
Louise Oaklander was one of the first researchers to identify small fiber neuropathy in FM patients. She found quite a bit of it but she believes the current testing regimens significantly underdiagnose SFN in adolescents. In this big study (almost $700,000), Oaklander will assess different SFN tests AND try to get at the cause of SFN using blood tests and skin biopsies. The study will end in 2020 and is being funding by NINDS (who else?).
- Funding Institute: NINDS
Clearing the Fog Around FibroFog?
This ongoing (and rather small $121,000) study will a) measure the cognitive problems in FM and people with depression and b) use an MRI to compare how their brains function during a cognitive test. The researchers anticipate FM patients and people with depression will have different kinds of cognitive problems and the MRI’s will reveal different patterns of brain functioning are present.
Risk Factors For Chronic Pain
Talk about a long-running study. This massive project which began in 2003 seeks to identify the psychological and physiological risk factors, clusters and genetic factors that predispose people to fibromyalgia and other chronic pain conditions. This project has produced about 100 studies thus far and it’s still going strong – it’s getting a cool $1,314,211 for this year.
- Funding Institute: NINDS
Understanding the Placebo Effect in Fibromyalgia
This study will give FM patients a placebo – an intravenous injection guaranteed to have pain reducing effects – and then use PET scans to monitor the activation of their opioid receptors. They will use the scans to assess the integrity of this pain reducing system and to find biomarkers that will enable researchers to better assess its activity. This ongoing study, last funded in 2014 is expected to wrap up in 2020.
- Funding Institute: NATIONAL CENTER FOR COMPLEMENTARY & INTEGRATIVE HEALTH (NCCAM)
Treatment
Biological Approaches
An Autoimmune Drug to Reduce Pain in Fibromyalgia?
The hypothesis behind this intriguing study is that pro-inflammatory cytokines are dysregulating opioid neurotransmission in FM patients; i.e. they are knocking down the opioid based system of pain relief in FM. First the investigators are going to determine the status of mu opioid neurotransmission in FM patients and then they are going to give them Etanercept, a drug used in autoimmune disorders. They predict that Etanercept will restore opioid neurotransmission and reduce pain in FM. It worked in animal models. Let’s hope it works in FM as well. This $250,000 study ends in 2018.
- Funding Institute: The National Institute on Drug Abuse (NIDA)
Acupuncture – Sort of – to Reduce Pain in Fibromyalgia
The proponents of this study believe that electro-acupuncture (EA) is better than traditional acupuncture in reducing pain. In fact, one study found that electro-acupuncture (EA) was more effective than placebo in reducing pain but traditional acupuncture was not. They believe this may be because the needles in acupuncture affect the ever so sensitive somatosensory system in FM. They’re testing their hypothesis using (1) EA and something called (2) “mock laser (ML) acupuncture” – a newer form of sham acupuncture that does not affect the somatosensory system negatively.
This rather expensive study ($645,000) will end in 2018
- Funding Institute: NATIONAL CENTER FOR COMPLEMENTARY & INTEGRATIVE HEALTH (NCCAM)
Blue Green Algae for Pain AND Depression?
The authors of this mouse study propose that common pathways underlie both FM and depression. Calling this conjunction of pathways a “dangerous pathological situation”, they state that having FM can trigger depression and depression FM.
Their solution – affect serotonin receptor functioning using extracts, fractions, and purified compounds from marine blue-green algae collected off of Panama. They noted that the task of examining the marine environment for therapeutic compounds has only recently begun.
- Funding Institute: NCCAM (National Center for Complementary and Alternative Medicine)
Traditional Chinese Medicine (TCM) Takes it’s Shot at Fibromyalgia
This five year study – which is ending next year – examines how effective ten weeks of TCM is for the treatment of fibromyalgia. The funder? Obviously NCCAM.
- Funding Institute: NATIONAL CENTER FOR COMPLEMENTARY & INTEGRATIVE HEALTH (NCCAM)
Opioids – Do They Help or Hurt in Fibromyalgia?
Many people with FM rely on opioids but the long term effects are uncertain. This Stanford study will determine what effects they have on the key neurological aspects of FM; i.e. the pain pathways in the brain and the spinal cord, as well, interestingly enough, on the activity of the “reward system” in FM. Finally a long term study will assess how effective they are at relieving pain over time.
- Funding Institute: the NATIONAL INSTITUTE ON DRUG ABUSE
The beta blocker reduces pain in animals. Will it in humans as well?
Another Low Dose Drug for Fibromyalgia?
First there was low dose naltrexone. Now these Utah researchers – no doubt in concert with the Lights who explored propanolol’s use in ME/CFS – propose the low dose propanolol – a beta blocker may be effective at reducing the delayed onset muscle pain seen after exercise. In this big study (200 FM patients) (they must have had some good preliminary data to score a study this big – they’re going to assess post exertional malaise (PEM) and gene expression changes after propanolol.
This 330,000 study will last for two years and is beginning this month at the University of Utah. (Contact email: akiko.okifuji@hsc.utah.edu).
- Funding Institute: NIAMS
Electrical Stimulation to Reduce Pain
You might not think that stimulation could reverse a hyperexcitable nervous system condition, but it’s the descending pathways from the brain to the spinal cord that inhibit pain that aren’t working well in FM. Enter transcutaneous electrical nerve stimulation (TENS) to get those inhibitory pathways up and running again.
This five-year $700,000 (in 2015) study will determine if using a TENS unit will decrease pain and fatigue and increase functionality. It ends in 2018
- Funding Institute: NIAMS
Combined Biological and Behavioral
The Drug and CBT Study
Both tramadol and CBT are used in FM to reduce pain and increase activity but rarely are they used together. This study combines tramadol and a version of CBT adopted for FM to see FM patients do better on both. It will also use actigraphy to see if poor sleep or increased activity are associated with increased fatigue and pain. Interestingly, they believe they won’t be. They will also evaluate psychological and neurophysiological variables.
This big 5 year study ($1,000,000 in 2015) ends next year.
- Funding Institute: NIAMS
Behavioral and Mind/Body
John Kabat Zinn developed Mindfulness Based Stress Reduction (MBSR) – a mindfulness and meditation-based approach to managing disease for people with chronic pain who weren’t able to tolerate pain drugs. That makes a natural for fibromyalgia. This Yale University study is slated to end in 2017.
- Interested in this approach? Check out MBSR videos in the Health Rising’s Mind/Body media section and/or a Mindfulness Based Stress Reduction handbook here.
- Funding Institute: NATIONAL CENTER FOR COMPLEMENTARY & INTEGRATIVE HEALTH
Yoga vs Exercise?
AIN OUTCOMES COMPARING YOGA VERSUS STRUCTURED EXERCISE
Mindful stretching and breathing vs graduated exercise (meditation vs aerobics)…this one is going to be interesting. The Veteran Affairs is funding this study ending in 2017.
- Funding Institute: Veterans Affairs
Catastrophic Reductions in Chronic Pain?
Studies indicate catastrophizing – focusing on the worst that can happen – increases pain….
Catastrophizing – ruminating on the worst that could happen – definitely increases pain sensitivity but no one really knows why. These researchers have an idea. They believe that catastrophizing activates the brain areas that process the emotional aspects of pain (e.g., anterior insula and medial thalamus).(There’s apparently a brain area for everything.)
They are going to reduce catastrophizing by using cognitive behavioral therapy (CBT) and then see if their a) pain drops and as it does, if the activity of the parts of the brain involved in the emotional response to pain reduces as well. This very expensive study ($700,000 plus) ends in 2019.
- Funding Institute: NIAMS
Neuromuscular Training Plus CBT for Teens
This small study seeks to use a different kind of exercise called neuromuscular training in conjunction with CBT to reduce pain and hopefully increase physical activity in teenagers with FM. This type of exercise is believed to limit post-exercise muscle soreness. This “cheap” study ($165,000) ends in 2016.
- Funding Institute: NIAMS
An Upgrade to CBT? Emotional Processing For FM
Stating that many people with FM have either increased rates of lifetime trauma or problems with stress or emotional regulation, this large study focuses on emotional processing. The authors propose that CBT’s inability to directly address stress and emotional dysregulation has blunted its effectiveness.
They also state they have “solid preliminary data” on the efficacy of “emotion regulation based interventions for FM”. NIAMS apparently agreed; this is a big expensive study ($600,000) that’s been funded since 2010 (making it probably a $3 million or so study).
The study compares emotional exposure therapy (EET) and standard cognitive-behavioral therapy (CBT). It ends in 2016.
- Funding Institute: NIAMS
Tai Chi – a First Line Treatment for Fibromyalgia?
The authors are so excited about Tai Chi for fibromyalgia that they believe their results will show that it should be a “first-line” treatment; i.e. it should be one of the first therapies doctors recommend. That’s a tall order but the same researcher has proposed that Tai Chi be used in other rheumatological disorders such as osteoarthritis and rheumatoid arthritis
This study will assess the short and long term effectiveness of Tai Chi vs aerobic exercise in over 200 patients using a variety of Tai Chi instructors.
- Funding Institute: NATIONAL CENTER FOR COMPLEMENTARY & INTEGRATIVE HEALTH (NCCAM)
Others
Bright Light Treatments to Restore Sleep Patterns (and reduce pain) – in Veterans
This is not a fibromyalgia study but given all the sleep problems in FM and ME/CFS it may very well apply. The authors note that delayed sleep patterns (late sleep) is associated with increased anger, depression, anxiety, fatigue and physical function. They will use a morning bright light treatment to try and restore normal sleep patterns and reduce chronic pain and improve PTSD symptoms, depression, anxiety and sleep in U.S. veterans.
all i want to say is that i did tai chi every week for over a year with a one-on-one teacher. she told me that if i was experiencing pain i wasn’t doing it right. my response was that if i move, i experience pain. that was the end of that … she couldn’t handle it. so frustrating.
plus, i’ve tried yoga for pain patients, aqua therapy, walking slowly, meditation. nothing has helped with the pain. artist endeavors help my mood, and meditation helps my attitude. but, that doesn’t mean i without long periods of deep despair and major depression. not isolating helps when i’m able to be with people and get out of the house.
you are all aware of these things. just adding to the story. good luck out there!
-dee
You’ve given mind/body stuff a good shot Dee!
thanks, cort! oh, yes, i forgot my attempt at acupuncture. i’m glad to hear that some people are having relief with these therapies. guess i’m just frustrated that i’ve tried so many things over the years and spent so much money trying them, without much relief. diet changes, supplements, warm water therapy, all of it. whatever. thanks for acknowledging me efforts.
-dee
i have been doing tai chi for several years. the a/c in the room bothers me. i do ok with it & I like it, but the right arm has to be held up a lot. it has increased my shoulder neck pain, but i get alot of acupuncture & herbs which helps. i am also lifting 1 pound weights. when i stopped both of those activities for the summer, my shoulder got a lot better. it is a fine balance between getting stronger and pain.
I absolutely agree with that last sentence. I believe I discovered the sweet spot when it comes to cardio exercise about 18 months ago and have made amazing progress. I think aiming for “fat burning” heart rate – 65% of maximum – in the exercise program, might be a good guide.
I also eat a strictly low carb diet – I think burning carbs for energy ends up poisoning the muscles with the by-products that FM sufferers bodies are incapable of flushing out like a normal person. Then as you keep up this “non-pain-producing” exercise regime, your aerobic threshhold rises and rises and you find yourself capable of more and more, while remaining within the fat-burning heart rate. And the overall capability for “doing things” increases.
But weights and muscle strengthening, I am not sure about yet. I know I gave myself a lot of terrible new pains trying this on mainstream medical advice (which I now believe is completely wrong and harmful). The important thing is muscle stretches, not strengthening. I think the muscles get stronger anyway as you become capable of doing more every day.
I can relate to what you say, “but when I move, I get pain”. This is particularly related to certain movements and postures, not every single movement you can make. My way out of this impasse, has been to do the movements and ever-so-gentle stretches, while immersed in a hot spa pool. Gradually, gradually, I have achieved more and more mobility in my muscles. I can now “squat” – something I could not do for most of the last 20 years without agonising pain.
This is still a work in progress, I still feel major discomfort if I try to do the stretches anywhere other than in the spa pool. The difference is that the muscles are warmed up, and the body weight is supported by water. When you try and do stretches while not supported in water, it throws typical POTS type stresses onto your whole system because of the postures you have to assume.
I will say more in a further comment, re what I think of the “mind” versus “body” theories. I think it is wrong to conflate the two.
Just chipping in re: exercise.
My pain is worse in the mornings, when I haven’t been moving all night. In order gain an afternoon of greatly reduced pain I have to get on the treadmill and actually PUSH through until the pain starts to lessen. As I think Phil said, I never run – each time I’ve tried I’ve ended up on my back for three days, but if I can walk briskly for 20 minutes it will pretty much buy me a pain-free afternoon. Interestingly, I can’t always push through. Sometimes I just know in the first 2 minutes that it’s not going to happen. But once I get to 7 or 8 minutes something interesting starts to happen with my breathing – it’s like I can FEEL my body oxygenating itself better. After 20mins I feel really good, and that’s the time for me to do a few yoga stretches (sadly, not the more advances ones I used to do before fibro). If I can keep this little system going every day I start to feel better overall. However just ONE day without the treadmill, or one time trying to be a hero and do 40 mins instead of 30…..wham. I’m out of whack and it takes forever to get back. It’s interesting actually, how hard it is to not slip up at least once a week or every two weeks!
Cort, I disagree with combining “mind/body/pacing” approaches as one subject.
I think it is wrong and an ongoing injustice to FM sufferers, that the NIH and mainstream medicine cops out and tries to resolve the problem at the point of “the mind”. I do not see any evidence that this is what has worked for anyone, ever.
When people suggest this to me – “it is all in the mind” – I ask them, “is muscle cramp all in the mind”? It is just as sensible and fair to suggest that FM pain is “all in the mind”.
It might seem that “mind” has performed a role in the recovery of condition by some people, including myself. I reject this – it is all “body”. The role of the mind, is in intelligence in controlling what you do with your body, and understanding what is going on in it. Self discipline in achieving the correct “pace”, maintaining breathing patterns and watching out for muscles being thrown into provocative tenseness due to posture (when doing exercises and so on), might be “using the mind”, but it is NOT “mind over matter”, it is like “being your own medical scientist” with your BODY as the subject of the experiments.
Well said Phil 🙂
i’ve recently been trying to read about neuroplastic pain control. very interesting, but seems quite arduous and difficult. my optimism is always fighting with my “i give up” feelings. ha!
-dee
I agree with Phil. The alternative therapies like acupuncture and tai chi, yoga etc. will never show any better results than placebo cause that’s all they are. Their is a reason mainstream doesn’t recommend them for, or Parkinson’s, or ms, or aid’s or diabetes, or any “real” disease. They don’t work. What their trying to do is trick us into thinking they will work cause in their minds if they can do that they can cure us. Same basic idea as GET & CBT.
I should also have said: I can believe that some people who were doing Tai Chi etc, might have improved, but if they thought the Tai Chi (etc) was the magic bullet, I would be certain that they were also doing other things right “by accident”. I remember a comment on this site once by Phillida Bunkle, saying she now realises years later, that what she got right by accident, was the “pacing” of her entire life routine, and the alternative relaxation techniques and so on were not “the cure in themselves”. They did luckily put her in the right general frame of mind to approach all activities at an accidental “right pace”. She did a lot of leisurely walks, savouring the sights and scents and so on.
What I was getting wrong for 20 years, was that at all times I did any exercise, I would exceed the threshhold for triggering fibro pain relapses without even realising it. I would always jog for a couple of minutes occasionally when going for a walk. I had to learn to stop this. I still do not try and jog for more than a few seconds even though I have got a LOT fitter and can walk faster now without causing pain relapses.
The mechanism may be what Cort has discussed occasionally, “reperfusion injury” and oxidation of muscle tissue that the fibro sufferer’s neuromuscular system is unable to shut down and transfer into repair mode, like a normal person’s system does. This is why I say coping is ALL “body” – “mind over matter” only works by accident if you get the “body” stuff right anyway. I know of no convincing example of someone who went from fibro pain and limitation, to “normal physical activity” just by mental pep-talking; and it is cruel arrogance of medical professionals to suggest that this is where the “solution” lies. And by extension it is us fibro sufferers “own fault” for not heeding their omnipresent, all-seeing wisdom. I note that it is Antichrist, in scripture, who “sits himself down saying he is God”.
Interesting, Phil, no M.D., various specialties, ever suggested a mind approach to me, rather “aerobics”, laughable at this point, I’m afraid, or various meds to throw at the wall. Since I found an apparently valid published positive yoga study for fibro I will be trying “restorative” yoga soon, despite negative experiences mentioned by Dee. I think Cort noted somewhere that there were 186 treatments mentioned for fibro;I assume that each of them worked for at least one person LOL. I’m going to throw a few bioflavonoids at the wall also, I think, after more research. You know what Nietche, I think, said, whatever doesn’t kill you, just makes you poorer…well, that’s what he should have said.
hahahaha! love it the quote: “whatever doesn’t kill you, just makes you poorer”! perfect!
Can you hear me screaming??? I’m so frustrated, I couldn’t even make it all the way through this article–a first for me on this site.
can definitely hear the scream, as some of it is coming from my own mouth! haha! and, probably the mouths of many others.
-dee
I can sympathize with Dee although I hope my first attempt at yoga will help or I’m up the creek with only my nasty 100 mg of Tramadol. CBT is a good treatment…for psychological disorders. For those of us with no cognitive and intermittent affective problems secondary to FM it is a useless approach IMO. I wish there was at least a solid hypnosis and self hypnosis study being funded. Milton Erickson, probably the best clinical hypnotherapist in history, controlled his severe arthritis pain with self hypnosis for much of his life, though it took him hours every day to do it. For a disorder affecting millions and costing ultra millions in lost useful hours (not to mention causing mind- numbing weird pains), FM is being studied in a half-assed manner. Every day, like many reading this, I get up and wonder how I’m going to face the pain all day again.
Just to let you know Cort, that mindfulness is now being advocated, by doctors, here in the UK!
Hello Cort (and all),
I’m hoping for some expert intuitive advice!
A breakthrough in understanding the pathophysiology of FM describes well my intentions. Accordingly, I’m about to start a Neuroscience MSc at UCL and have an opportunity to conduct some research in the (arguably) world leading department in areas of molecular properties of ion channels.
This is a pretty broad statement, however, is there a particular line of enquiry that jumps to mind?
Thanks
You might want to check out the recent work that Sonya Marshall Gradisnuk is doing in ME/CFS. http://www.cortjohnson.org/blog/2015/05/22/australian-study-pinpoints-gene-issues-in-chronic-fatigue-syndrome/
There’s another paper as well this year although I’m having trouble digging it up.
Good luck with your MS – it sounds fascinating 🙂
There’s a lot of work on ion channels in pain that’s for sure.
Here’s from a recent Facebook post from Jarred Younger suggesting that Chinese medicine may be quite powerful indeed. I would love if herbs – as cheap as they are – could be part of the way out…
https://www.facebook.com/Neuroinflammation-Pain-and-Fatigue-Laboratory-at-UAB-1543963919214695/timeline/
Luteolin is a natural flavonoid compound found in many foods, with some great sources being oregano (particularly dried), celery seeds, and thyme. Several companies sell various forms of capsulated luteolin. As reviewed in the paper, the compound acts as an anti-oxidant and anti-inflammatory in the brain. Research on compounds such as luteolin is exciting because many of those compounds are already commercially available. There are dozens of herbs and other natural supplements that have been found to reduce neuroinflammation.
Several of those botanicals have been used in Chinese Traditional Medicine, Ayurvedic Medicine, and other traditional medicine approaches for thousands of years. However, most of those compounds have not been tested in properly-controlled human clinical trials. We will begin studying luteolin and eight other botanical microglia-modulators later this year. Our first trial will be on veterans with Gulf War Illness. We hope luteolin will help with chronic pain, fatigue, and brain fog in those individuals. We will later expand the study to individuals with other chronic conditions.
LUTEOLIN has been very helpful to me. I take the formula created by Dr. Theoharides, Tufts Univ. researher on Mast Cell Acyivation Disorder, FibroPROTEK, from Algonot and available at amazon.
I suspect I also have MCAD, mast cell activation disease.
After a decade of increasing fatigue and back pain, I started yoga in 2004, also to help rehabilitate from a lumbar spinal fusion. After a few years, I noticed knots in my shoulders began hurting and I couldn’t get my arms straight up like the rest of the class (embarrassing). So much for yoga! Then a broken neck, osteoarthritis resulting in a hip replacement and months of physical therapy–I’m still in pain. CBT (2 different psychiatrists) for 15 years, no improvement (you’re just depressed!). Two months of acupuncture did nothing. I’ve been on just about every Schedule II patch & pill out there, and still am. I asked my rheumatologist about LDN–he keeps telling me “I need to do more research on that.” Even funnier still, I have Hashimoto’s, and when I asked my endocrinologist about LDN, she’d never heard of it!
Sally,
Have you thought about just ordering online and dosing yourself? I low one person who did this successfully. Obviously the concern would be the product you were getting – but if AllDayChemist still sells LDN I’m pretty sure it would be the real deal, since I used to get all my Retin-A products from there when I had acne problems, and I’ve never heard anybody complain about the things they’ve ordered from there.
I would do it in a heartbeat except that for LDN to work you have to come off all your other meds, and I am SO scared to be without my tramadol in the day and ambien at night (even if I don’t always take them every single day I need them there by my side!) that the thought of actually having to come off them just fills me with horror. They are the ONLY two things in my life i can rely on – tramadol to dull the pain at it’s worst, and ambien to put me out when I can stand it no longer!
Alice
PS – had some thoughts on the exercise thing too – will put them in a separate comment.
Hi Alice,
There is a very strong group of LDN true believers on Facebook, they don’t like people to post who failed to get relief. We didn’t dose right, take time, etc., etc. They are using LDN for everything from autism to pet ailments. As Cort has suggested, FM and ME probably have a variety of subtypes that each need different treatments. I got LDN from Alldaychemists, 50 mg tab I titrated with 50 cc water to make a solution of 1 mg/ cc, as well as 1.5 mg capsules from an Israeli pharmacy who has them made and shipped from Italy. Go figure. Many people have used both sources and I’m sure they are ok. The bottom line is that you are either an LDN responder or not. I took .5 mg for a week and then increased by .5 every week. Too fast? Who knows? The day before I was going to 3 mg I got excruciating FM cranial pains I hadn’t had for 25 years, since initial DX. Horrendous. Stopped LDN, went back to regular FM pain
I can’t do a slower trial because I don’t want to coordinate Tramadol with an opiate antagonist like LDN. I did my LDN trial a year ago, before my FM had gotten really bad, was not on Tramadol then. In summary, it’s easy to get but, like any trial, you may have to get off everything else, a real hardship. Good luck.
wish I could help you.
I got out (almost completely) of really bad Fibro…I was at the lowest.. with seeing a 30 doctors telling me I was depressed.
Couldnt brush my teeth, could not move, was screeming from pain.. had my period every 10 days… couldn’t sleep while exhousted.. all those pins and needles en strange nerve issues…
I was sur a herpes virus was at the root of this. Then a biologist told me my IGG for zoster were sky high, wich was not normally for someon that contracted this at 4 year old.
Essential oils (look at the mint family on pub med ncbi sites) that are affective in killing herpesvirus whas the first big step in healing for me. I was taking them internally, and gave myself massage with it daily, 2 times a day…and noticed differences every month.
That’s how i stopped medication for pain.
Liposomal vitamin C helped me also… herx in the beginning, could not tolerate a lot.. and after two months Could increase until 2 000mg of liposomal daily.
MSM, was the same story…helped a huge amount, even though I had to do this very slowly.
Olive leaf is also the same story….
Glutahtione (immunocal) also same story…(S acetyl glutathion is also very good).
Those where the things that helped me kill a huge amount of virus particles. It was hard sometimes, but definitly worth while.
Next to that, I also did a lot of cleaning and detox, but this was just support for health in general.
NT factor is something is think everyons could benefit from. Make sure to add a good multivitamn wit carnitine, ALA, and taurine and Eskimo.
The primary thing is repair mitchondria damage…and make sure to get oxygen to the cells again… (MSM helpes for that)
I turned to a complete sugar free paleo diet.. and that helped me get their faster. I mean that…i felt a big difference.
but the abvious thing that helped me was taking valacicovir in March…after 3 weeks only, my IGG titers drop tot half the amount…and my pins and needles (300 a day) went back tot 50 a day..Today… I have 5 a day.
I want to share my story.
I now know my fibro was reactivation of herpes zoster.(without skin eruption).
But Lyme, and other infection guess could reactivate in nerves too.
But is no lyme, I think fibros should check there herpes virus titers… and if too high…(and though some docters say it doesn’t mean anything, it is not true!!) treat for that.
Sandrine
I have been on opiods that “back-fired” and I ended up on very high doses-had developed tolerance and the pain got worse and worse.
I’ve tried nearly all the above without a lot of success except for MBSR has been very effective to reduce stress which helps reduce the pain for me.
Any type of continual exercise does not work for me. I love doing Qi Gong- the Ba Duan Jen health one. It’s just 12 min long and some days that’s fine but other days not so good. I never know how I’ll feel the next day or day after etc. I was doing this 2-3 x per week but have never been able to be consistent as some days I have 0 energy and too much pain to think about moving.
I find with ME/CFS what works for one person does not mean it works for all. So I’m not sure what these studies will actually come up with considering our unique body chemistries. And why do repeat studies like the Tai Chi one, there are so many other possibilities to study.
Hi Cort- this is great stuff. I have had Fibromyalgia now for 13 years…I am also a PhD student in biomedical research. I am wondering where are you getting all this info from? I’d like to look more into some of these studies but am not finding much in searching for some of them…thanks!
I found them on NIH Reporter – https://projectreporter.nih.gov/reporter.cfm – did you look there?
… going skiing again was a significant and sudden step for for me in my FM struggle. t After a very debilitating first couple years I was fortunate to find a good combination of medication, dietary, and lifestyle practices that work reasonably well. I still dealt with daily pain, but it was much more manageable.
I then I started alpine skiing again and took what seemed like a significant and sudden step forward. While mindfulness in general, and mindful physical activity in particular seem to be helpful for many with FM/ME, my thinking is that there might be something helpful about doing activities for which one has *pre* FM/ME muscle memory *and* positive associations. When I am having fun skiing or biking or hiking, or anything physical that is really fun (and especially with friends) I can push harder and last longer without triggering PEM. Could it be that the nervous system has “memories” of it’s pre-illness “self,” and that it can use those memories to help normalize.
Any thought?