I was right there with you until you said it doesn't get worse because it ABSOLUTELY DOES! I've become increasingly more disabled over the last 10 years and my pain has gone through the roof despite taking so many measures to counter this horrible disease.

@JanaD1985

Жыл бұрын

Same. For me it used to be joint and muscle pain. Fast forward 10 years and when I get a flare I can hardly walk, can’t sleep, can’t do anything to be honest.

@hundun5604

11 ай бұрын

The first 5 years it got worse, after that it became less painful overall. Nonetheless the pain in my feet got worse. I must say that I'm not 100% sure the cause is fibromyalgia. It could also be a nerve disorder (SFSN) that came with my FM, but standing got more troublesome with my feet the last few years. At first it was my lower back that caused the most pain. Now it's my feet.

@joanmorris7450

11 ай бұрын

​@@hundun560455:44 😊😊

@kimhensley4583

10 ай бұрын

I absolutely agree! My Rheumatologist has told me the last 2 times I've gone to see him in the last 3 years due to starting to lose my hair, my pain becoming so severe I can't walk to the bathroom my knees and back and legs hurt so bad, I can't grip my coffee cups from the pain in my hands and wrists, the fatigue and no energy and brain fog...And he told me my Fibromyalgia is getting more and more severe. It's getting deep in all my joints and on top of my arthritis is causing more fibroflare's because the pain is a lot more severe.

This was a great webinar and really informative up until the part where she said fibro doesn't get worse unless we decide it does. I understand fibro isn't technically a progressive illness but that doesn't mean it doesn't get worse for some of us as time goes on. I've been doing all the 'right' things for years, I do cbt, I see physios, I get dry needling done, I do the small amount of exercise I can weekly with my physios, I take complimentary meds and vitamins, yet I've still 'ended up in a wheelchair' (hate that saying). In fact using a wheelchair is now the only way I can still go to events and be social if it requires walking or standing. I'm really upset at being told I decided my fibro would get worse, I think that's very invalidating to a lot of us who do everything we can but nothing works. I used to be able to study 4 days a week, use public transport, walk to classes, work on weekends or see friends, but now I can't do anything multiple days in a row, I can't work, I can't study, I didn't decide that.

@Gideonsmythe

2 жыл бұрын

@@evieeerieburlesque I'd be cautious of any website or You Tube site offering a "programme" put together by an ex-welder, two ex-servicemen and an ex-chiropractor. None with any medical qualifications in Neuropathic Pain. This course may be the bees-knees as we say in the UK, but how much does it cost compared to an appointment with a qualified Rheumatologist? And Cognitive Behaviour Therapy which helped teach me a few pain-avoiding tricks is free on the NHS in the UK. There is no cure for Fibromyalgia, it's like a complex puzzle, it gets easier with time as you learn to stay ahead of it. Fibromyalgia attracts grifters and snake-oil salesman like cow sh*t attracts flies.

@MSKAust

2 жыл бұрын

Great discussion everyone. Fibro is a really complex condition, and everyone's experience is different, so we appreciate your input. If you'd like to speak one-on-one with our nurses about any of these issues, please call 1800 263 265 weekdays, or email helpline@msk.org.au.

@lindafogarty3924

Жыл бұрын

I think those living with fibromyalgia are the most qualified to speak about fibro, and it absolutely has gotten worse as I’ve gotten older. I have no other conditions except fibromyalgia and I consider myself an expert on it but people who don’t have it have no understanding, heck, I don’t understand. All I can do is try to live with it best I can and respect my body as much as possible. I do and have done everything possible to help myself. Not sure how much any of it helps. The recent study of finding antibodies responsible for the symptoms of fibro when injecting these antibodies into mice, seems like the most promising research done. Many rheumatologists believe that it’s pain amplification and basically we are just more sensitive than the average person with regards to pain. Oh they couldn’t be more wrong about that! What about all of the other symptoms we have?? Not to mention, why is the pain there to begin with and in certain areas? I find it the most invalidating so called “reason” for fibromyalgia. There is something wrong with me very wrong with me, that is causing not only pain, but I feel sick all the time. I can be fine one minute and the next feel like I have the worst flu. So many factors can make it worse. It can even be a smell. I’ve had this my whole life, and it came full on after my hysterectomy at 40. I am not 59 and have been on disability since 40. I can’t sit or stand without it making the pain worse, but I still do those things and fight through it most days but still my life looks nothing like a normal person without fibro. I am disabled but look fine on the outside. Thank God for my supportive spouse. My daughter has this disease too, as well as my Mother and my Aunt, and my niece is showing symptoms of it. I pray for a cure but Im afraid it’s going to be awhile hopefully if not in my lifetime, my daughters lifetime.

@claudial1240

Жыл бұрын

@@lindafogarty3924 I hear you 😞... I may have only been diagnosed this year, but I have been suffering already for a few years (with no official diagnosis till March this year) but for over two years, I've been treated by so many specialists as though I'm completely insane. Perhaps they thought I felt like wasting their precious time, never mind the thousands of dollars spent or the multiple hospital visits for extreme pain especially in chest area..... Each day I wonder what new symptom I'll feel. Every now and then, I actually have a normal day where I convince myself it isn't real, but then the next day I get reminded it's all very real. Reading comments like yours makes me feel like I'm not alone. Tonight, I have that dreaded flu like symptom, not really a flu but I'm feeling it. Complex would be an understatement for anyone suffering fibromyalgia.....

@jacquelineclauson4891

Жыл бұрын

Please try intermitten fasting

still not understood enough, id like to see someone who has this disorder try to fix it, not someone who guesses.

Once again the only medicinal treatment pushed are anti - depressants and epilepsy meds. I have tried all of those mentioned and the side effects are horrendous and can make life much worse. Weight gain is inevitable and again makes everything so much worse as exercise becomes difficult. Then to come off those meds are a nightmare. Brain zaps, aggression, increased depression etc etc. There has to be something else... And no recognition is what is really distressing. I'm tired of doctors with narrow options, like I say horrific drugs and reading about pain. Sorry to be so negative but after 15 years I've had no real help. And the solutions have not changed. No mention of Ketamine? Is there no research into some kind of block in the pain receptors? And many people like me on a DSP cannot afford regular hydro, massage etc. Can't get help through the ndis as Fybromyalgia isn't even considered! So basically nothing has changed for many years.

@dr.jessebautista4658

2 жыл бұрын

It can be cure?

@rose-lh8xd

2 жыл бұрын

i hear you i am in the same situation horriable medication after medication no pain relief but horriific side affect that leaves me feeling worse

@dr.jessebautista4658

2 жыл бұрын

@@rose-lh8xd you know fibromyalgia and chronic fatigue syndrome can be treated and cure the main cause of fibromyalgia is lactic acid build up in the cells..causing reduces ATP production and hif1alpha accumulation eliminate these all the symptoms will all disappear.

@footstol66

2 жыл бұрын

Edit:adding in surely they are so commonly proscribed because they helped. So sick of being put on anti depressants. I've only had one help my pain but made me non functional couldn't drive, brain fog and fatigue so destructive I can bearly take care of myself (not that I don't already struggling with this)

@djm5699

2 жыл бұрын

Charlie J. Look at he KZread site info I just put up KenDBerry a g.p worth reading gooood lord clearly. Sounds interesting

I have had fibromyalgia for almost 30 years and have tried mindfulness a few times. It increased my pain to the point of tears. It’s not for everyone.

@tomassyrian6458

2 жыл бұрын

hi 👋🏼 i’m from canada 🇨🇦 i have fibromyalgia it’s really painful 😣 but the new uk 🇬🇧 research and study for fibro could help and change many things i force my self to do evin the simple things

@Nba_kevin01

2 жыл бұрын

@@tomassyrian6458 I'll advice you recommended Dr Obinyan on KZread, he cured my wife from fibromyalgia,he has the permanent cure for all types of disease and viruses....

@Homeheart1

2 жыл бұрын

There is a problem with mindfulness not being addressed ,there are also other options.

@Homeheart1

2 жыл бұрын

@@dr.jessebautista4658 There is also problems with science, there are other options.

@dr.jessebautista4658

2 жыл бұрын

@@Homeheart1 how do you know it will not work?

I have found tremendous relief by cutting out all processed foods as well as all flour and sugar products, even homemade.

@jacquelineclauson4891

Жыл бұрын

I totally agree as it helps me too

I've fibromyalgia and because of it unbearable pain. I can't sleep. Every time when I fall asleep I wake up due to the pain and after 5hours or so I can't lay still at all. When I ask the doctors for help with the pain they give me the middle finger. I wish I could show them how bad the pain is. Let them feel what I feel.

@oliviawatson6364

11 ай бұрын

Have a go at mushroom supplement that works, helps relieve inflammation and the stress works well for me, look up albovegateway

@oliviawatson6364

11 ай бұрын

....on Instagram, I get mine from him and they ship to anywhere.

Fasting is working for me and I’m just getting into it. Also in the past changing my diet and light exercise helped. If I don’t try to eat right and fast I end up in extreme pain.

I take 2400 mg of Gabapentin for my fibromyalgia pain, as well as pain meds for back injury including torn tenden in both my biceps. I also have sclerosis of the SI joint, tailbone injuries I have collected through past accidents. My knees are always in pain, and makes it hard to sit on seats not risen a little higher to get off of. The doctor that diagnosed me with fibromyalgia said that my test showed that I supercede the point scale for the test. My body hurts to the touch, and have yet to be able to sleep through the night without muscle relaxer.

Dr emuakhe is an epitome of good treatment,the doc has every criteria to human health.......

What a great piece of work you’ve produced! As a sufferer of 27 years long, it all makes sense. Thank you!

Thanks

I have all these simtons and had my vollppen tubes clipped and now waiting for ivf and pain cream that you can get on repeat at pharmacy.

Nice video

Thank you so much for the useful information!

When they finally realize it's in the vascular system, maybe they'll be able to alleviate much of the misery. Because the vascular system encompasses all body functions, that explains why the pain(s) spreads. One minute in the head neck or shoulder, suddenly in hip knee or foot. Just recently it was found vessels have nerve receptors inside themselves. To me, that's the missing link and where research needs to go. In the meantime, diet, good vitamins, magnesium, and minerals, exercise as able, managing life stress's and praying for answers to help the millions of fibro patients.

@joanndombrow4245

2 жыл бұрын

The vascular system this is the first I am hearing of this. When and where did you find that out and what happens next thanks in advance

@missmjr3870

Жыл бұрын

Makes a lot of sense what your saying I’m very surprised no research has been done on the vascular connection to fibromyalgia

My father has fibromyalgia aswell as myself. I see it in my eldest son too. I was diagnosed in 2016. However as I reflect , I remember experiencing symptoms back into my childhood. 7 years on, 7 years older I believe my body receives the variety of symptoms with increased levels . I wonder if this is due to my body been older / aged. Not necessarily because we that suffer with this illness think it increases in its pain and symptom levels. A really great informative webinar. Thankyou!🙏🙋🏻🐶☀️☕️🍪. From the southwest of England.

@Nba_kevin01

2 жыл бұрын

I'll advice you recommended Dr Obinyan on KZread, he cured my wife from fibromyalgia with his herbal supplement, he has the permanent cure for all types of disease and viruses...

Great!

milnacipran caused me to have hot flashes and cymbalta gave headaches. I'm now on lyrica which takes the edge off...doesn't completely get rid of the pain. Still suffering. Amitriptyline can cause heart issues if u have heart disease

please can you talk about new uk 🇬🇧 study about fibromyalgia that can gave hope for many of us

@mitchellgina9872

2 жыл бұрын

Hi Tom, what study is that, I would be interested in looking at it. Thank you

I have fibro and ME really benefiting from seeing nutritionist drastic change in diet eliminated sugar processed foods some supplements not many. After 1 month my weight is down ..Great. and pain is much less. I will continue.

Thank you for your video, I can relate to many symptoms. I was diagnosed over 10 years ago and I can control it through management and normal pain relief. I have good days and bad days. One thing I notice when going to have a flare up is a burning/antiseptic smell in the nasal passages, it lasts about a day then I will have a flare up. Is there anyone else suffer like this, or am I being paranoid

@kimscheu568

Жыл бұрын

I always find a sore spot near either side of my temple when I'm washing my hair and I know I'm about to have a flare up within the next few days

@jalsapillodu9972

Жыл бұрын

Its celiac disease causing fibromyalgia, i too had similar symptoms like u said, now i have got cured from fibromyalgia.

@wendyhannan2454

10 ай бұрын

I have celiac disease and my Dr thinks I might have fibromyalgia. I believe in time fibromyalgia will be seen as an autoimmune disease, just like celiac is.

Emma baby !! What’s your opinion of Dr. Ginevra Lipton ,and Dr. Howard Schubiner ,and their latest findings ?? I’ve had it ,and studied it for 15 years, and I believe yours is the typical wrong chat!!

Can abdominal pain be a manifestation of fibrmyalgia?

Im trying to find my ow 33:10 n doctor now where i live my doctor is clueless. I've had this for over 25 years.

Kann Diplopie (Strabismus) ein Symptom von Fibromyalgie sein? (Eye muscle involved)

@rashasaif8787

Жыл бұрын

Yessss me tooo same you

I suffer from Fibromyalgie for 4 years now, and I am not sure that is that the cause

I think it's a lack of dopamine brought on by too much cortisol... dexamphetime works wonders😊

Hmmm I have them all

@oliviawatson6364

11 ай бұрын

Have a go at mushroom supplement, fully natural and organic works well to diminish inflammation and relieves stress, look up albovegateway

@oliviawatson6364

11 ай бұрын

...on Instagram, I get mine from them.

i think there is new uk 🇬🇧 research 🔬 and study 📖 about fibromyalgia i hope that will be true and helpful New research from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, in collaboration with the University of Liverpool and the Karolinska Institute, has shown that many of the symptoms in fibromyalgia syndrome (FMS) are caused by antibodies that increase the activity of pain-sensing nerves throughout the body. The results show that fibromyalgia is a disease of the immune system, rather than the currently held view that it originates in the brain.

@dr.jessebautista4658

2 жыл бұрын

Fibromyalgia is is a disease of energy metabolic disorder. It means AEROBIC GLYCOLYSIS IS THE PROBLEM resulting in decreased ATP production and accumulation of HIF1ALPHA .

@dr.jessebautista4658

2 жыл бұрын

It's not originating from the brain it's originating from the mitochondria due to poor oxygen perfusion of oxygen in the cells and tissue that's what causes all the symptoms of fibromyalgia and chronic fatigue syndrome

@dr.jessebautista4658

2 жыл бұрын

It can be easily treated

@sanchiamcquiston725

2 жыл бұрын

@@dr.jessebautista4658 help me understand how it can be easily treated ?

@dr.jessebautista4658

2 жыл бұрын

@@sanchiamcquiston725 I can REALY help you treat your fibromyalgia I have been doing these for almost ten years and my treatment is base on sound medical and scientific method if you are really interested you can watch one my two patient testimony that I have done.the caused of fibromyalgia is poor oxygen perfusion in the cells and tissue ,less oxygen in the cells of the BODY means your mitochondria will not function andunaerobic glycolysis will occur resulting in decreased A.T.P production. ATP (adenosine triphosphate) is the energy molecule that is produced by our mitochondria in the cells to maintain the energy requirement for protein synthesis, synaptic signaling ,muscle contraction,intracellular signaling when we think when we walk it's all A.T.P less ATP means low energy production you easily get tired or you developed dysautonomia that is just one side effect .there will be increased lactic acid in the cells and accumulation of HIF1ALPHA .these small insignificant protein is the one that will activate ,induced and promote proinflammatory cytokine that will further aggravate your fibromyalgia condition.of you are interested REALY interested to be cure you can text me my cell phone number is in the patient testimony video thank you for you taking interste in my treatment

Differential Diagnosis of Myofascial Pain Syndrome and Fibromyalgia Robert D. Gerwin SUMMARY. Objectives: This review examines diagnostic factors of myofascial pain syndrome [MPS] and fibromyalgia [FMS], and their differential diagnosis. Fibromyalgia is really just horribly spread myofascial pain syndrome

@ktkt9982

Жыл бұрын

That makes sense. I experienced a bout of temporary crippling transverse myelitis some 20 years ago.

@johnathanabrams8434

Жыл бұрын

@@ktkt9982 how did they diagnose you with that?

@ktkt9982

Жыл бұрын

Spinal fluid test. MRI, Bloods. I could not walk, was admitted to major city hospital. Cared for by neurologist.

@johnathanabrams8434

Жыл бұрын

@@ktkt9982 what are you doing to fix your fibromyalgia?

@leisahammonds4479

Жыл бұрын

What if you do not have the myofacial pain syndrome?

culprit: microwaves, it can last a few years

Fibromyalgia to me is a disability it takes controll of your body i have been put on different medication that did not help me all of them make me feel worse and sick nervers the doctor tell you do not take aleve or aspirin i take 2 aleve with ensure for back and muscle pain once a day i get a little relief for a while those medication make you depress when you are not depress i was put on a medication resonally told it takes 2 weeks before i might feel an affect took 1 and was sick for 3 days besides the fibromyalgia pain i had all kinds of crazy feelings that i did not have before those medication might help some people but not me i all so have 2 different kinds of heating pads one goes around my neck and shoulders and a kit call tens which is an electrical nerve stimulation i am trying my home remedy

@pamelasmith2625

Жыл бұрын

I am like you. My doctor keeps trying me on different medications. I have severe reactions to all of them. I am not trying any more. They just make me feel worse and it takes me days to recover. It is so debilitating. I hope you find some relief. Big hugs, ❤️🇨🇦❤️🇨🇦

KenDBerryMD Site on KZread: fibromyalgia - the answer. Speaks of research done, low carb diet….. not after money, refers toresearch undertaken and pathology

@leisahammonds4479

Жыл бұрын

Wtf?

Fibromyalgia sucks totally destroys your life I had it for 25 years after a back surgery

Fibromyalgia is very very serious condition no doctor takes seriously I suffer very much of pain start with my ears eyes loss my hair my feet pain tremendously I can't not put shoes I can't not Walk my shoulder my back hurts I have nuts allover my body I cry every day e night I can't not sleep dizziness I can't go over e over