Fibromyalgia Treatments & Current Research: A Q&A with Dr. Daniel Clauw & Dr. Andrea Chadwick
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- เผยแพร่เมื่อ 17 ต.ค. 2022
- Globally-recognized fibromyalgia experts Dr. Daniel Clauw & Dr. Andrea Chadwick discuss current approaches to fibromyalgia treatment, and the evidence base behind them. Learn more at swing.care
Dr. Daniel Clauw is a Professor of Anesthesiology, Internal Medicine specializing in Rheumatology, and Psychiatry at the University of Michigan. He is also the Director of the Chronic Pain and Fatigue Research Center, which was among the first research groups to show the prominent central nervous system contributions to pain and other somatic symptoms in individuals with conditions such as fibromyalgia, interstitial cystitis, idiopathic low back pain, vulvodynia, and endometriosis.
Dr. Andrea Chadwick is Medical Director of Swing Care and is double-board certified in Anesthesiology and Pain Medicine. Her clinical expertise focuses on complex centralized pain syndromes including fibromyalgia.
I was hoping to get some hope out of this but I didn't. I am 65 and have been dealing with this since I was in my 20s, diagnosed in my 30s, and confirmed by a rheumatologist at 40. Offered Celebrex and declined because of the long list of side affects. Not much helps with pain but strong drugs which I just can't take...helps for a minute and hurts for longer. I am 5'10 145 lbs, they heaviest I have ever weighed, so obesity is not an issue for me and only in the last year and 1/2 have been less active, because I am just so sore and exhausted! Most of my life I have just pushed through because I refuse to give in because it hurts if I do any and it hurts if I don't. I have sleep problems so that does not help either. I move, I self talk, I do the things. So what I got from this video is that all I can do...maybe...is manage the pain. That's it. I wish one day...just one day I could have no pain.
I know what you mean. The diagnoses change but the pain remains the same. I’ve forgotten how it feels to NOT hurt.
Declined the Celebrex too for the same reason. I also live the same, I just keep pushing because what else is there. You're not alone in the struggle. 🫶🏾
I wasn’t aware that fibromyalgia has been a diagnosis 30+ years ago. I though my diagnosis in 1999 was early in the syndrome.
I absolutely agree… I’m 63.. fell at 14 down basement steps…. Late teens ..or, other treatments.. then diagnosed with ankolysing spondylitis… became very active young mom, critical care nurse, also continuing with university education .. very busy full time… living being busy busy… all the sudden hit the wall with fatigue.. after many MANY tests. Diagnosed from MRI and spinal tap ..with MS… ( one research neurologist of mine convinced I got MS from receiving first released hepatitis B vaccine , as it contained live virus for approximately first year it was released… many co-workers also succumbed to a variety of autoimmune diseases within 5 years of vaccine ( it was pulled and now they use a non-live virus… I’m not an anti-Vaxxer.. )
Have been maintained pretty well with MS… except walking increased problematic.. lots of pain in legs and back… my ‘pain specialist’ wanted to surgically place a type of a “tens-unit “… but prior to that , I had to have a full spinal cord MRI( up ‘til then, I’d only had regular brain and cervical spine MRI’s… found what my pain Doc says is the largest area of stenosis ( 5 vertebrae involved in (T-11 down) so that precluded tens placement… I’ve done hypnosis.. PT, water Therapy… repeated epidural injections… anything ya’ can think of!! I’ve always shied away from marijuana.. not my type of thing back in the day when it was illegal… just always a bit afraid of it, aside from truly careful to avoid Phil’s my license as a registered nurse.. plus I guess I’m old fashioned.. but now as I am plagued with ungodly pain.. newer cervical spine stenosis.. screwed up rotator cuff repair ( not screwed up
,so much as it just seemed to change the type of shoulder pain!! And now arthritis in my Frappin thumbs!! I am almost to the point of complete despair…. And I have long suspected I have what I think is probably fibromyalgia… and have ever since back in the day when that diagnosis was given with significant eye-rolling and fobbing on patients that were labeled malingerers… then this fella here on this video .. admits he has never had anything like it… and next thing out of his mouth is how awful opioids are !! Good Lord … all we ( all I, at least!!) want is some damn thing that will allow us ..he’ll even if it’s only one day a week.. but SOME TIME where we could actually have NORMAL ACTIVITIES OF DAILY LIVING… without being treated as tho we’re practically criminals for wanting to be ALLOWED stronger meds so that we don’t feel that death is the only think that will ever stop our relentless pain … a nurse for 45 years having to present my correct number of pills to some office aide, treated as if we were the criminals running the drugs thru the southern border!!!
We… and there are MANY of us… we are also victims of the opioid crisis
I’m sorry there are irresponsible and criminal doctors out there who sold narcotics and scripts to people who had no business having them
I’m sorry cartels are doing the smuggling they are
I’m sorry heroin and crack addicts are a bane to society… but can anyone tell me why the hell this particular law abiding , formerly highly functioning member of society now can barely go do her minimal grocery shopping and ADL’s without having to recover from it with practically a whole day of bed rest and being out of commission??? I have a very high pain threshold .. but along with that , I seem to have a rather high tolerance to pain meds … all the sudden a few years back, my PCP was no longer allowed’ to prescribe pain meds and boom! Had to have a ‘pain specialist’!! …who about had kittens because I was on fentanyl patches … one every 3 days .. which allowed me the ability to continue to work as a nurse ..albeit part time .. and maintain my home and family life … I immediately, no questions asked or tolerated…was taken off something completely working for me and put on generic Percocets that the office girl has to count out every month .. and
I’m subjected to urine testing … frankly I resent it … and this fellow on here saying he’s never actually HAD any chronic pain, but opioids are horrible for treating it !!!
The find something that will!!! Because, let me share something with you … talking yourself out of horrendous chronic pain doesn’t freakin work … no matter HOW many buzz words you pepper your flowery talks with
Let’s try going back to treating people who NEED pain medicine with some me … let’s treat and care for those that need it, and punishing the abusers rather than the other way around!! I know… I know… it’s a crazy concept!!
No new information and trying to find a doctor that can help that is a major challenge , I've had fibromyalgia for 35 years and all of the doctors end up telling me I can't help you 🥲
Same ol same ol. have had fibro 30 years have degree in psychology and started and facilitated a support group at a local hospital for 23 years starting in 1990. I also have a study published in the Journal of Musculoskeletal Pain.. All the CBT stuff is b.s. Its a hard life in pain. you cant think away pain or forget its real. We push thru life ourselves everyday just to get anything done or have any kind of life, but still must spend most of our lives in bed because of pain and fatigue from all the pain. Most of my 440 people in support group including myself were and are not overweight. We dont need CBT to realize obese is hard for everyone not just us. There is no pain relief offered in this video. That is what we need. Really thought in 30 years we would be further then this.
I can offer some pain relief for men but not women. And even then some of the things I take I wouldn’t suggest people just take it. I’m more than willing to trade in 10-20yrs and die younger than older in a bed in agony.
Hormones play a huge role in this, finding the right testosterone levels, estradiol, etc etc. I would strongly recommend starting with some IV or IM shots in B12 everyday for one week then every week for a month and then once a month. If you get to the once a month and notice a huge difference that’s worse for the once a month injection go back to once a week. Thiamine injection done in the same dose for Parkinson’s treatment may help also to an extent. After you dial in each shot then add the next one and so forth. Vitamin d injections are once every four months, amino injections, lipids if needed, taurine and anything that especially helps with mitochondrial repair and increases. These all may or may not work for some people.
I’m big on IV and IM methods as these have a 100% bioavailability. Vitamins taken orally are pretty much a waste of time and money.
Peptides are another amazing medicine unfortunately HGH isn’t available as a treatment option. I’ve had incredible responses to HGH. However BPC157 both subcutaneous and orally have different benefits and should be taken along with TB500. I would suggest most people do their research first of course.
The more movement, the more fatigue. At one point in my life the advise of these doctors was true. The longer I have had Fibro (74 years) the worse the condition has become. Everyone is different and at different stages of life. There simply is no one size fits all treatment. I was always active with our 7 children but, I missed out on so many things because of the fatigue aspect of Fibro. I have slept about two thirds of my life away.
Walking in your shoes. I use to be so active in so vibrant , nothing ever stopped me until I got fibromyalgia and chronic fatigue.
I am with you Susan...it can get really discouraging. At least no one is telling me it's in my head anymore, and people don't roll there eyes anymore if I mention Fibro. I used to be embarrassed to even talk about. Aw...I wish I could sleep. 🥴😵💫😵💫 Take care Susan.
you and me both lost so many years of life in bed watching life pass us by because of no help,amd to much pain amd fatigue.
Have any of you do found a way to lessen the fatigue?
I've spent 20yrs pushing for every step I take. Is there anything that can help me? Or is this my life?
@@63SpaceGirl There are a few supplimemts that have helped me in the last 30 years all supported by studies done at our largest universities. Co-q10 is the best. Also Korean Panax Gensing, NADH will also help, and many swear by Ribose as a suppliment to boost the effects of these. The B vitamins also help a B-complex one, so you get the right amount of each B. Astralagus does help and studies prove it boosts our immune system. Try one minimum of 30 days before giving up. Add another when you can each potentate the other. Not gonna be like you were before but does help if you give them time. Hope your having a good day. Myself diagnosed in 1988. During the first large outbreak of CFS at Incline Village. Google it.
I’ve been dealing with this for over 40 years and was only recently diagnosed with fibromyalgia. But I also battle Multiple Sclerosis. I’ve discovered that I absolutely have to move. I have very limited energy reserves and I hate thinking about exercise. But what I do is multi focal. I garden. No power tools allowed. But my limited energy goes toward producing excellent food. I’m productive. It hurts. But I’m in the garden getting activity in fresh air and getting sunlight Vitamin D. I can only do so much so I try to make my labor count by increasing efficiency and farming my soil. The earthworms do my tilling. When my lower half starts getting very heavy, I have to stop and go recuperate. I’m gonna hurt and I know it. It’s a balancing act. But my activity goes towards a much healthier diet that I grew myself without chemicals and fertilizers. You farm your soil and it grows your plants. When I’m gardening, I’m not eating because I’m busy. I’m being productive and that really helps my head.
I can relate. Just even 1 raised bed gives me joy.
I have tried a little bit of everything and refuse to take many things because the side effects aren't worth it. I do benefit from taking Mobic every day and lately I have been taking muscle relaxer and cutting it in 3rds amd taking just a tiny dose at night before an activity like a road trip and it has been very beneficial. Also flexing my muscles that hurt through out the day helps me. I know that sounds odd but I feel like my body holds tension and flexing seems to actually relax the pain cycle.
Thank you for this very informative video. I’m in the UK and basically we’re on our own. We have No Fibromyalgia clinics and nobody really cares. I’m completely intolerant to Gabapentin, Pregabalin and Duloxetine and have been told there’s nothing anyone can do to help me. I’m 53 and have severe osteoarthritis which led to a collapsing spine so I had a 5 level fusion in 2020. I also had a coccygectomy in August 21 and in December 23 had a screw put in my middle finger in my right hand. All of the surgeries were completely necessary but because of the fibromyalgia I’m still in a lot of pain. I’m fairly active in the home but can only walk 20 metres or so outside in one hit, using crutches. I struggle to see how I can improve from here when there is literally no help out there. I’m a very creative person so thankfully I manage fine mentally and always keep myself busy and fulfilled. I just wish we had access to experts here in the UK 😢
Start with the AIP diet. After a 2 weeks to a month you should start feeling better plus lose some weight. Add one thing at a time and see within a month how you act to it. So on and so fourth.
What is aip diet please
💯 the only answer I got was Amitryptiline or codeine. In the UK they just aren't interested in treating the underlying causes and just throw useless medications at you that cause more side effects and more problems.
Hi, I have been dealing with severe fibromyalgia for over 25 years. I live in Canada and find it very difficult to find any help for my pain. Most rheumatologists don’t even want to see you if they know you have Fibromyalgia as they don’t know what to do with us. I too am allergic to most drugs so it is impossible to get any pain relief. The past few years I have more and worse symptoms. I didn’t think it could ever be any worse. It is just so debilitating. I try and stay as positive as possible and make plans to do things with my wonderful supportive friends. So many times I want to cancel at the last minute, but force myself to go and. Am always glad I did. The laughter we have when we get together always makes me feel good. I find swimming gentle lengths at my local pool is the only thing that gives me a very small amount of relief. The water is just so gentle and soothing. My walking has become very limited and I am very scared about the future as I live on my own . I have been subscribing to a Fibromyalgia magazine from England. It is very informative. They seem to be doing a lot of research in the UK you may not be aware of. I would highly recommend you get the magazine, it comes in magazine form, or an online version. I can’t get the magazine here, just the online one, but it is good. I hope you get some help soon. I think most of us fibromyalgia sufferers are on our own. The doctors really don’t have any answers for us. They say exercise, take physiotherapy , acupuncture. I can’t tolerate any of those. It is. Very lonely Illness as we don’t look sick and people can’t understand why we can’t do things. Even my sons who are very loving wonderful men tell me I don’t try enough and they think I should travel more and be more active. They have no idea what it takes for us to just even plan a trip let alone think about dealing with airports, planes, all the people, difficulty walking and dealing with our luggage. I tell them not to judge me, but they really don’t understand. It is very sad when your own family doesn’t get it. My husband passed away a few years ago. He didn’t understand what I was going through and would make comments when I couldn’t do things. It was very stressful living in that atmosphere day in and day out. Please take care. I left England when I was 19 and have lived in Canada ever since. Must admit that I really do miss the English way of life. Love the countryside and little villages. Don’t have anything to compare to that in Canada. It is a beautiful country, but doesn’t compare to England. Hugs❤️🇨🇦❤️🇨🇦
@@pamelasmith2625 what is the magazine called are you.hypomobile? 82 percent of people with fybromyalgia have Asperger's add ADHD.ocd took me until 43 to find out after sins diagnosis my mum is hypomobile sure eds to severe ms.the energy motabilism
I started taking 100 mg of vitamin B1 ( thiamine) and the mind numbing relentless pain from both fibro and polymyalgia rheumatica has subsided by 60 percent at this point . I am off celebrex and hope to be able to reduce my prednisone in the future . The improvement in the rivers of pain in my legs and feet is dramatic. I can walk again !!! Look into it ....the B1 test has to be the whole blood test as the one done on plasma is unreliable . Do some research for yourself ,,,,I'm glad I did.
How long do you take it before you notice improvement? Thanks
@@jeremiahsmith8405 It was at least a month or so as it has to have time to rejuvenate nerve tissue , good luck
What’s so crazy is that when I feel good, I tend to overdo it & am down for 3-4 days! If I take more Lyrica than prescribed for a couple of times & I feel so good that I don’t have to take my pain pills. However I can’t do this all the time because I’d run out of my prescription. I can’t seem to find a balance. Maybe I should pace myself so I could do for more days, but when you feel good, it’s like being on a high & you really want to accomplish something. Maybe this high feeling is abuse of the drug, but when as a fibromyalgia patient, I feel great, it’s wonderful to be without pain. I can’t sustain using this medicine all the time. I wait until my pain is bad & the painkillers aren’t helping, I start on my Lyrica. I feel like taking it as directed, it doesn’t work as well.😢
I was crying through this entire conversation. It's nice to be acknowledged .
Me to , battling it right now
I agreed with most of this based on my personal experience. However, i have to disagree about some of the comments related to exercise. My issue isn't fear of the pain while exercising (which I can easily handle), it's of the flare that the exercise will cause. I was a runner so i understand what you mean by "the good hurt," but that's not what i experience. I am often surprised by how i might have minor or no pain while exercising, but within the next few hours or the next day, i can hardly move and the pain is severe. Fibro made me give up exercise because it simply hurt too much, literally all the time. At the time, i was running 8 miles a week and running a 5k at least once a quarter.
Exactly what are the things we may be doing in making things worse? I've been eating non processed foods, no sugars, well balanced, intermittent fasting for several years now and still have peripheral neuropathy (from an unknown toxin), occipital neuralgia, trigeminal neuralgia, arthritis (lower back, hands, feet knees shoulders, fibromyalgia, chronic fatigue, dyspnea, hypertension. I walk around the house all day long doing chores as the neuropathy pain is much worse lying down. A lot of times I feel like I am turning to stone.
Hi Michelle - Thanks so much for sharing this. It’s wonderful that you’re already taking some behavioral approaches to care, like movement, even when it’s challenging to work through the pain. In talking with a fibromyalgia specialist, they might suggest other behavioral therapies, like cognitive approaches, or other physical approaches, like manual therapy, or work with you to do an in-depth review of your history and current treatments.
You and I are bookends all same symptoms.
Started in 2001. I will be 70 next month. Worked hard all my life (nurse).
I was called the Sears Die Hard because I never stopped.
Today I am mostly chair bound.
Most meds have toxins in them like
“Titanium dioxide “. Toxin that bills up in your system. All most all meds ( all capsules) have it along with polyethylene glycol and so so much more they have no medical value but they will make you very much sicker. I have had several surgeries have gone wrong because doctors put titanium in me I break out in hives, my nails have all lifted off of my nail beds 3 or 4 times. Had a mastectomy that went wrong how does the mastectomy go wrong when you tell the surgeon three times do not use titanium in . He did . I became very sick after surgery had to be redone over because it didn’t heal I ended up with a cellulitis and they had to take the expander out that had titanium tabs in them doctors don’t care they’re not knowledgeable. I have so much scar tissue that causes a great deal of pain all the time along with all the fibromyalgia pain, arthritic pain, finger nail pain. head pain. White noise in my head 24/7. Not tinnitus. I can feel pressure build up in my head. G.I. Problems since childhood. Frequent falls due to poor balance. I too eat a healthy
Diet. Use to walk 2 miles a day until my knee and hip gave out. Tried all the usual meds, side effects plus titanium dioxide.
Chiropractor Tx. No help . Made worse. Shots helps for bursitis
For a while. P. T. Made me worse.
Pain meds help. But then you are labeled a drug addict. Every day I beg Jesus to take me home. I have no quality of life and the pain sometimes is just too unbearable.
Sleep is a joke, wake up frequently to change potions due full body pain, bone spurs in neck. Multiple back deformities. How did it all start?? Titanium implants that my body rejected and toxic meds given to us. How do you function with little sleep, chronic fatigue ,
And constant pain. But God!
Thanks for this interesting discussion. I'm interested to hear more about fatigue in fibromyalgia. I know for myself that pacing is crucial, and if I overdo things/push through pain I can have such a crash I can be wiped out by fatigue for days, to the point where it is hard even to eat. I also find that if I spend too much time at a stretch on my feet my joints (especially knees but sometimes hips or ankles) can start kind of locking up, making getting home difficult. How does this correspond to the pain being in the CNS? I don't really understand how CNS pain can do that to me. I'm doing very well at the moment, I've been doing hydrotherapy for the last nine months (with hot/cold sea bathing, which I've found really good for pain relief) and gradually walking more and am now at the point where I feel like I can carefully take my exercise program up a level, but I'm finding fatigue rather than pain is the limiting factor for me at the moment.
Hi Jean - Thanks so much for your comment. The exact causes of fatigue in fibromyalgia are complex, and have been hypothesized to be related to central nervous system neurotransmitters and inflammation levels; autonomic nervous system function; and stress hormone activity. Although these systems have been implicated in the pain that is a primary symptom of fibromyalgia, they also impact other related symptoms of fibro, like sleep, mood, and energy levels.
I would not call mine a fatigue issues, when I push through the pain. After 40+ years of basically treating my own, just a small amount of drugs as I’ve always been highly chemically sensitive or allergic, I finally went for Physical therapy and was told it was to much. The 1st exercise they gave me at the assessment ended up putting my pain off the chart halfway through my week at home. They tried to give me a milder warmup for shoulder, as I went in for neck and mid back issues. We put PT on hold with me trying to again figure out how slow slow needed to be. 4 weeks later, I’m still trying to get back to where I was before I started the PT.
What i experience when I push past the pain for to long, is my body just doesn’t listen at all and goes limp…I have to have two helpers to get to the car, or a wheelchair, and my pain levels will be off the chart a few hours later and for several days.
Again I don’t feel like it’s fatigue, though sometimes I can tell my sleep is probably not restorative, or high levels of insomnia. It’s more the muscles just refuse to take signals from the brain, no matter how much it screams at them. The pain screams seem to stop for a while as well.
Hi guys, just wanted to share something I found by accident that has worked wonders for my fatigue and brain fog. It's B9 or folic acid. Discovered because it counteracts the side effects of Methotrexate. After a couple weeks noticed I was functioning at a higher than normal level without added fatigue. Also noticed my clearer head. Did it solve the problem, no. It did help about 25% and I'll take any improvements. Get the best you can afford cuz, it can be expensive. ❤️❤️❤️
Do you have hypomobility that's the link it causes fatigue as standard.before CFS then fybromyalgia.then Asperger's add diagnosis my mum has severe ms hypomobility eds ime sure most of this people undiagnosed Luke myself until my son's started in the spectrum fatigue OCD add Asperger's. Genetic for us
So if it's a brain pain sensitivity problem why the easy bruising and joint enlargement?
Because you have eds? Eds central sentization hand in hand
I was told by my doctor to check out videos from Dr. Clauw since he's an expert in fibromyalgia. I was just diagnosed today actually, but the symptoms started nearly 10 years ago. I just could not get any doctor to take me seriously due to having an anxiety disorder and RA since I was a baby, and maybe partly because I'm a woman. I was basically dismissed and treated like a hypochondriac. No matter how many doctors I went to, they all chalked it up to me not coping well with my existing diagnoses. But finally I have a wonderful team of doctors that are helping now 🤗 and I'm excited to learn more about it and feel better for the first time in a very long time. 😊
Why are you not looking into leaky gut syndrome and how the immune system attacks what it considers are foreign bodies in the body that are,actually toxins or undigested foods containing elections that have poked holes in the lining of the digestive tract which are causing inflammation in the body. I don't believe my fibromyalgia is simply my brain being too sensitive to pain. I can see the inflammation in my hands and other parts of my body and feel it and I have been tested for RA and lupus and am negative.
Thank you so much. I learned a lot. I will get active!
Several years ago the University of Tel Aviv reversed brain changes in fibromyalgia patients using Hyperbaric Oxygen Therapy. Do you know whether this research has been replicated and if so, where? Thanks.
Yes, there have been more recent studies looking at the effects of hyperbaric oxygen therapy. Here’s an example from 2020: pubmed.ncbi.nlm.nih.gov/32636943/. There’s also a meta-analysis that you might be interested in: pubmed.ncbi.nlm.nih.gov/36690401/
That said, these studies are small; larger studies are needed to determine viability as an effective treatment. The most recent recommendation is that further research is needed.
The best knowledge comes from those of us who live with this condition daily. Doctors should listen instead to their patients without stigmatizing firstly. The body is a whole mechanism from our mind thought to our physicality. Inflammation is an obvious contributing factor and I can tell you what we eat has a great influence as to how our body reacts to inflammation and pain. I have found that I cannot tolerate stress or stressful situation as that puts me into automatic fight or flight mode. Stress being emotional or physical. Unwanted stress can be inflicted just from going to a doctor appt with one who does not listen or even believes in what we say that we deal with on a day to day basis. That causes anxiety and a flare to our system and contributes to further suffering so honestly I stay away as long as possible . I do get good vibes from your video and it’s nice to hear that you are discussing this terrible condition with sensitivity and empathy . I’m a 56 yrs old woman dealing with fibromyalgia for over 17 years. I take no meds and lean towards natural therapeutic treatments.
Since I went to new dr u gives me shots in mainly my shoulders and knees and coming soon my back--has tremendously helped my fibromyalgia pain😊
What kind of shots?
Usually lidocaine was steroid, I used to have shots frequently in my lower back shoulder hips knees one helped my carpal tunnel but neck a couple of shots however my neck was so hard that the doctor had a very hard time getting the needle in and yes I did scream
I used to get steroid shots but became allergic to it and they hurt me so bad and made me worse off.
When my back starts hurting i know without a doubt that im about to have a severe flareup with FM. 😢
Good information 👍 thanks ❤
Obviously, neither of these doctors actually suffers from fibromyalgia.
Hi Alison - Thanks for your message. I'd love for you to join us on our webinar with Dr. Liptan, who has fibromyalgia and will be discussing treatment with us. You can find the signup link here: get.swing.care/ginevra-liptan-andrea-chadwick-webinar-signup
Yes there is an opiate pandemic. Because doctors continued to order opiate medication‘s weeks and months after surgeries should’ve been pain-free ordering opiates for people that really don’t have pain you can only get addicted to opiates when you take them when you don’t really have pain but you get a high from that and so you take more and more not so for person with real pain. Opiates do not make fibromyalgia worse, it allows them to live a life, and sometimes evil be able to work and make a living instead of being on disability. You doctors don’t have a clue about real severe chronic pain
@@karendolumba6007 Hi Karen - Thanks for your message. Dr. Clauw is making a distinction here between three types of pain: nociplastic pain (derived from the central nervous system, like fibromyalgia), nociceptive pain (caused by ongoing inflammation and tissue damage), and neuropathic pain (caused by nerve damage). This is important because determining the type of pain will also help determine what treatment is most effective. This article is a great resource for the evidence base on these different types: www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(21)00392-5.pdf
I have fibro, never drink coffee or caffeine, never have.
@@karendolumba6007completely agree. We don’t all fit into there categories…lyrica & cymbalta was horrible for me. Taking opiates in a smart way has given me life, 16yrs now
CBT and acceptance doesn’t make the pain go away. And pushing yourself makes it worse. Dr Martin Rutherford states it’s a brain stem problem that needs to be corrected not just managed.
Thank you, I’ve learnt things here to help my self with fibromyalgia. I know moving and exercises helps, however some times it’s so hard to get started. Your talk has motivated me to get moving, I need to move through the pain.
So glad to hear that! You might also be interested in this webinar that goes more into movement with fibro: th-cam.com/video/8_Bhu9TkWi4/w-d-xo.html
If your state allows for medical cannabis, try it. It doesn’t work for everyone but it did for me. Before medical cannabis I was in a narcotic haze for 20 years. Since I started cannabis 5 years ago and I am almost back to my normal self.
@@user-rm2rq8fq1l How do you take it. I am from India.
I have a friend with Sjogrens, Lupus, and fibromyalgia. How can I help her
My fibromyalgia started after months of having costocondritis. I don't have pain, but I have chronic muscle fatigue all over my body. The costocondritis keeps my upper-body with constant rib stiffness/arthritis, while the fibromyalgia makes my muscles constantly weak and tired. This has changed my life, but I have to just deal with it.
... Nobody understands what my body feels. It's constant discomfort. I have to always take breaks to rest from the simplest activities. I exercise and stretch still, but very gently. I can only walk at a slow pace because I immediately get stiff and weak. Lying down is like paradise.
....I know doctors know little about this and have no solutions and little advice. Why waste the time and money on doctors?
Dr. Daniel CLAUW I NEED HELP THIS PAIN IS TERRIBLE I was diagnosed by a doctor that I have RA/fibromyalgia I can’t take this pain.
Anyone heard anything about the possibility of copper toxicity playing a part. I'm just starting a low copper diet to see if it helps.
Can Diplopia (Strabismus) be a symptom of fibromyalgia? (Eye muscle involved!?) Otherwise all normal tests: multiple sclerosis, myasthenia gravis, thyroid, etc... Acquired in the last three years and worsening over time.
My friend always says, “Motion is Lotion.” Muscle pain after exercise is a good pain but there’s no way I’ve been able to sustain exercise. I want to try Yoga because I feel like it’s good for the brain & body.
But please suggest tablet
Beneficial video
Hyperexcitable C nociceptors in fibromyalgia, 2013
It’s not in the brain, that always sounded like some excuse that stuck, by doctors who can’t find a cause or mechanism. The paper above shows that silent nociceptors are activated in fibro patients and not in controls. Silent nociceptors get activated if there is inflammation or tissue damage, and otherwise are not firing. So that must be the ‘don’t touch’ response you typically get after an injury. The paper goes on to conclude there must be something wrong with the nociceptors. I’m guessing the simpler answer is there is actually something noxious in the tissue that keeps the nociceptors activated. Indeed,
Fibromyalgia and cytokines, 2014
“Pro-inflammatory levels of cytokines IL-1RA, IL-6 and IL-8 are increased and anti-inflammatory cytokines decreased in fibromyalgia.
Chemokines are also found to be increased in fibromyalgia patients.”
So there is some low key inflammation, wonder why no one is able to figure out what causes it. Since it’s apparently not of an infectious nature or autoimmune, it seems it has to be some chemicals that the patient is exposed to repeatedly, otherwise noxious stimuli would eventually get processed.
I’m beginning to believe the culprit is coffee.
I can only conclude from the lack of countrywide prevalence numbers in India and China that fibromyalgia is mostly nonexistent. Almost 0 coffee consumption in India, and China also very low. Conversely, if I look for prevalence numbers in China, what does come up is only Hong Kong, which apparently has enough patients to worry, and coincidentally have westernized coffee habits. Turkey has some 10% of women in an urban area with fibro. Turkish coffee includes drinking the powdered beans.
Norway also has 10%, and are among the top coffee drinkers in the world at 9.9kg/person or 4-5 cups per day.
It may also explain why women are much more effected than men in fibro:
Long term coffee consumption causes reduced good cholesterol HDL in women, but not in men. They also found no correlation with fasting blood sugar, counter to most other studies claiming lower risk of diabetes. This further supports the notion that the risk studies results are due to self selection of diabetics stopping coffee consumption, because coffee acutely raises blood sugar.
Note the authors set out to prove that coffee is good for metabolic syndrome, not bad, so they are very muted in their wording
Relationship between long-term coffee consumption and components of the metabolic syndrome: the Amsterdam Growth and Health Longitudinal Study, 2009
“The results showed that moderate and high (>2 cups/day) coffee consumption was significantly associated with lower HDL in women. For men, coffee consumption was not associated with any of the components of the metabolic syndrome.”
Lower hdl is not good, muscle pain has been associated already with statins that lower cholesterol. In the case of coffee I’m suspecting the HDL is being used up in repair.
Interesting. Thank you for all your research efforts.
I never drank coffee in my life and I have Fibro
@@annielovesstamping it was just a guess, unfortunately I don’t know anyone with fibro so I can’t really see circumstantial evidence.
@@Rene-uz3eb I’m sorry if I sounded harsh, I didn’t mean to; I really wish we could figure this out because it’s hell. Thank you for your input.
I have never had raised esr or crp or citakines..homocysteine also normal normal but do have elevated hb127 or something like that..rheumy said it's elevated in ankylising spondylitis and also 90percent of fibro suffers...sorry ..having not of fibro fog at the mo have elebated
I can't wait for the future. I'm 71 years old. I don't have much time left on God's green earth. 23 years ago they put me on Prozac because, of course, I must be crazy or lazy. I gained 45 lbs. I took myself off of that junk. I have tried to be active. But now I need a hip replacement. There goes the exercise. I'm scared to death of having surgery. Not sure what to do now. I'm tired.
So sorry, I've got RA (40yrs), kept saying to anyone including my Doc's that there is something else going on. 2yrs ago (finally) got to the bottem of it, Fibromyalgia...I was relieved yet sad at the same time. I'm also 71 (way to young) 😢.
God Bless you with the surgery and after. I'm starting on a strict diet tomorrow hoping and praying for some relief. 📖⚘
Hope it all goes well
Just push yourself thru the rehab .try some leg strengthening exercise before the op if u can..will help ur recovery..if u have access to hydrotherapy after wound healed that will help..good luck
I'm going to make a bold claim , you can stop and reverse to a limited extent , the damage caused by fibromyalgia, the missing link is lugols Iodine, not in isolation , I have spent the last 5 years repairing 30 years of damage . This is a key part of systemic repair -damage ,
This is not yet for an open forum ,
If you want to discuss this further , feel free to contact me ,
Then decide if I'm a loon or 💯 right .
How to contact you?
Anyone else seem to lose the overall pain when you actually get sick with a flu, like N1H1? Or Covid?
Flu symptoms are usually short lived and not much issue, I usually have a normal body temp of 97.2 I can feel a temp of 98.6 or 99.0 but usually doesn’t stop me. 102 is a little fatiguing but manageable.
Also though a mild touch can cause pain, I have been through things that are high pain and it doesn’t raise the pain much higher. Might Makes things hard to concentrate. Like a sports car that does 0 to 90 in a few seconds but it doesn’t take much to then go to 100 mph and it was made to run smoothly at those high speeds. Everyone else is in a family car that takes a while to get to 70 but then feels like it’s shaking apart at 90 - 100.
I had mild Long COVID-19. I also have Multiple Sclerosis and thought that the long recovery was due to the MS. But then I got the vaccine. First shot was a sore arm. Second shot was exactly like having COVID-19 all over again but that’s when the really extreme fatigue, severe cramps in my neck, Autonomic Dysfunction in my blood pressure and heart rate fluctuations really started. I’m convinced that it’s made the fibromyalgia worse. I already fought arthritis pain in my body. Now it’s all worse.
I am like that. I had a broken foot for a couple of months when I fell in my garage my knee hurt but later my Dr. Noticed I might have a broken foot & did. I also broke 4 ribs when I fell out of bed once and didn’t know until a Dr saw my old x-rays. So weird how tolerant we are to high pain.
Yes the paint is from repair of hip joint and broken femur, after a fall was NOTHING compared to fibromyalgia, or a dose of covid. I am 80. And would love to be more active. Inability to travel is the cruellest after being frugal in order to enjoy retirement.
Plus, I fell down the stairs and broke my pelvis last yr up by my right hip. Was transferred in an ambulance to ER. It took 2 rounds of X-rays to figure out what was wrong and why I couldn’t walk. My pain Dr told me that the pelvis is the most painful bone to break because it supports the entire framework. It was painful when walking but I have had days as bad with fibromyalgia!
As weight release lifestyle is a better term than diet.
Lectins not elections in foods in comment below
How much research has your university done with environmental toxicity of the many chemicals or plastics inadvertently consumed by us and other life, which is bioaccumulating in most of life on the planet? The chemicals and plastics are not being regulated by the FDA, USDA, and EPA? Is your university studying the effects of micro and nano plastics/particles in human tissue and blood? Maybe the plastic and chemical environmental pollution is effecting health leading to lots more diseases, which current doctors do not know how to treat with US western style health care. There seems to be some correlation with the US population with the introduction of certain types of chemicals and polymers. Did you wonder why maybe there is a connection to the uptick in fibromyalgia diagnoses? We now know glyphosate type of chemicals does lead to Parkinson’s and Cancer type of diseases. Does your university ignore this information and research due to private interest money research?
I would like you to know-- the term: Acceptance and Commitment Therapy makes me extremely triggered. To the point of crying. Please don't use that kind of term for any kind of therapy anymore. As a matter of fact, I was a research person for Swing care. I pointed out that I hated that term. Despite that, you include it in your care, and your app. I am not arguing with the same types of therapy, but that that term is no helpful. I am someone who is very "active" and I also "exercise" and of course I accept that I have pain-- but I still have a goal of decreasing it.
Planet Ayurveda provides the best treatment for fibromyalgia. I feel like myself again!
Nothing new, but at least they are based on reality.
Dr schubiner says can't no good for TMS because it makes you laugh be with the pqin
fibro is too complicated to be treated and managed.
"Exercise" makes me hate my body. It makes me feel ugly and bad. It triggers my PTSD. I hate our culture.