How to manage ME/CFS pain

Gary’s been struggling to manage his ME/CFS pain of late. Here’s his experience of dialling down the pain and why it takes practise.

[@itsallieperry6019]

Thank you Gary for explaining the pain so well, I was beginning to think I was imagining it or somehow manifesting it myself! Until you hear other people feel the same as you, you can feel as if your going a bit a mad, especially when people think you're just tired all the time! Congrats with the wedding x

[@zonkedclub7681]

Thanks so much. You’re not alone in thinking like that. Happens to me so often! Sending best wishes.

[@thepracticalsurveyor]

Gary was a very brave person. RIP.

[@SludgeMan90]

how did he pass??? I had no idea/

[@loobylouboti]

​@@SludgeMan90 Apparently he passed away from the stomach cancer he'd had twice and that the surgery for had triggered the ME/CFS. Bless him.

[@bernadettemurray8260]

So very sad🌹

[@bazmarty6084]

Thankyou Gary.Be free and rest in peace.You are sadly missed 🦋🦋

[@judyspiegel441]

Gary. Thank you so much for your video.I have had me/ccs for 30 years but have been too ashamed to tell anyone. Having this problem discussed openly is wonderfully freeing

[@QWERTY-ri5yw]

I just don’t understand why my body is doing this to me, everyone around me thinks I am a hypochondriac!!

[@zonkedclub7681]

hayley quinn sending best wishes.

[@neverstopsmiling3653]

I'm sorry to hear that..stay strong

[@bell4textu973]

Stay away from toxic people! It`s not your fault you are terrible ill.

[@dianecarubia1099]

Hi Gary i know this about 2 years old but i get it all!!!!!!!!!! everything you have said about being fed up and wanting your life back. I am 18 years in and have forgotten what its like to feel normal anymore you just live with all the pain and symptoms. i still think i'm in Denial, i still crash and i still am hanging onto my now only 2 afternoons in NHS although i think early retirement is on the cards, its so hard to accept my career is over for good!. I'm now 55 and it gets harder as we get older! although I just am grateful i am still here it could have been worse!! My kids have seen some of their friends loose parents with cancer my kids are now 2 young adults and they seem to have grown up healthy and happy ( i have no idea how i did that!!) i hid it from them in their school years as i didn't want them to see me sick and worry so id drag myself up for the school run then go back to bed!!. ( i think other mums thought i was a drinker and had hangovers!lol!!) Good luck to you and congratulations on your marriage.

[@RamonaMcKean]

I'm 72 with this dreadful condition. I understand everything you write here. I've been sick 8 to 9 years. I just googled Gary Burgess and learned he passed away January 1, 2022. Very sad.

[@kellykels9651]

Totally understand I've had ME since 2010 so nearly 9 years. I still have breakdowns here and there. I find as soon as i find a level of acceptance theirs a new one waiting. Gentle hugs x

[@jnisrud254]

2010 here too! I've moved through different levels of functioning but find however far I get (from bedridden to parttime working) that each level comes with it's own set of expectations, dissapointments and frustration so I find every stage both fysically and emotionally hard to deal with even though people tell me 'but you're so much better than before'

[@MrsHjort]

I'm undiagnosed and have been for over tree years now. ME fit's my symptoms so that could be it, but right now have reached the point where I don't really care anymore. Anyway, thank you for this, it was just what I needed to hear today. It's good advice for all who struggle with low energy, whatever your chronic illness might be.

[@chaostocosmos]

More excellent points Gary. I think you just explained why mindfulness can be helpful. Another thing I find is helpful to release the additional pain in the neck that the worry and tension adds is yoga neck stretches.

[@zonkedclub7681]

Thanks, Pamela. And good advice on those neck stretches. I shall look them up. Appreciated.

[@jakpaqkelty10]

Thank you for your video and wishing you all the best with the upcoming wedding!! How exciting!!

[@zonkedclub7681]

Thank you so much!

[@sgr9400]

Thanks so much for this video. Very insightful & helpful, especially on the subject of needing to re-focus on the coping strategies you’ve found helpful in the past. Also, the mindfulness here & now focus on getting value & simple yet fulfilling happiness from everyday life with CFS/ME. I’m 29 months deep into this illness & can still make the time & effort to enjoy my life. Thanks so much for your blog & YT channel that I’ve also shared with some of my CFS/ME buddies. Continue to take good care of yourself & thanks again 😀

[@alijolley8190]

I'm in my 13 th year of having ME and I have to say I still struggle sometimes to cope with bad days, especially after a better spell actually, it somehow seems tougher to deal with. So I just wanted to say that I stumbled across this video today whilst looking on you tube as a distraction from the pain and found it really helpful especially the explanation about neuropathic pain, it seemed to make sense the way you explained it. I think it reminded me of a few things that I knew but have been perhaps forgetting lately so it was exactly what I needed to hear, thank you. X

[@zonkedclub7681]

Ali Jolley thank you. I know what you mean about needing to be reminded from time to time. I’ve been through a recent boom and bust phase and have found going back and re-reading blogs and watching videos helpful. Sending best wishes.

[@86Smally]

Omg listening to this it’s like its coming directly from my brain but I couldn’t articulate it, please keep making videos and a few updates, I have fibromyalgia and really really struggle at times, this will sound strange but I hate fibromyalgia with a passion but it’s my only friend too, it’s the only friend who doesn’t judge me or abandoned me or let me down as it’s always there!

[@melissamulkey1033]

Yes, mold avoidance is crucial. That was the biggest improvement followed by a Carnivore diet ( and I've been on Paleo, Keto, vegan, etc etc).

[@martineellis-theteachingsp6073]

Hi Gary - thank you for your honesty - I hope it is helping you to share in this way. As the video goes on, you seem to share more and more. Your friends will understand - those that are real friends will. I have chronic pain (I had to Google that to check I had a right to even call what I have that - what's that about???) and have had for nearly 4 years. We need to be kinder to ourselves. I like what you say about being in the moment too. Lots of love, Martine x

[@zonkedclub7681]

Thanks so much, Martine. Kindness is key! Sending love. x

[@astrid1870]

Gary I am so so so sorry an amazing person such as yourself has been struck with ME/CFS :( you seriously do not deserve to feel as shitty as the rest of us. I really hope that things get better for you soon. Love your videos Astrid

[@zonkedclub7681]

Astrid thank you so much. 🙌🏻

[@hotstitch1]

Hi Gary thank you. Kindness to myself is my discovery too. I even got myself an array of little woolly hats to sleep in. the best one even had a chin strap. I realised I hd not valued my comfort or my rest for many years prior. just kept raising the bar on myself.subscribing now. tks

[@angelabanton3070]

The worse thing for me with ME is the pain, nausea, dizziness, paralysis cause of severe fatigue Also cannot stand everything triggering flares like the sounds, smell and weather, or just moving on my power chair or even talking too much. I have to wear earplugs.

[@abigailracheldewolfe6421]

Such a great encouraging video, thanks so much!!

[@willowithywindle]

You have my empathy Gary. I am in year 30 of severe M.E. The excruciating pain lessened over time, the first years were the worse so you may improve. This is quite a ride isn't it! Your sharing is valuable. (Pregablin is very hard to get off by the way)

[@zonkedclub7681]

Thanks so much for the message, Willo. Hope you’re doing okay.

[@jnisrud254]

Very intetesting that you mentioned the pain at the base of your skull. I never connected this to my chronic fatigue, my doctor said it was tight neck muscles! I dont't have much pain at all except for this very small concentrated spot and boy can it hurt, it comes up very suddenly and immediately gets so strong I can hardly keep my head up.

[@heatherhartman6474]

LOVE your videos! Thank you!

[@rachaeltomlinson4935]

I only found you via Radio 4 last week and I am so pleased I did, this totally explains the pain I suffer when I have done too much, I described it today as it feels like someone has to strings running from the back of my head and pulling down to my hips with pain all the way down and tender to the touch. I am still awaiting my diagnosis though my CBT therapist is certain ME is what I have as I tick all of the boxes so to say... good luck for your wedding and I look forward to your next VLOG - I haven't secumbed to pain meds yet and really don't want too.

[@zonkedclub7681]

That’s quite a description, Rachael. Wishing you all the best.

[@candiceford2142]

Thank you for your time and effort doing these videos . I can relate to many things you said . I also have a KZbin channel. I was doing videos teaching on marriage and other topics and had to take a break for a few months . They can take a tremendous amount of mental energy from you even if your a healthy person ! Lol I’ve been listening to Dr. Caroline Leaf’s video on detoxing your brain . Have you ever heard of her ? She’s got some very interesting videos on KZbin. She teaches about how science is now finding that we can actually change our brains and even repair them if there has been damage which is not what was previously known or taught . I’m 34 and I’ve had ME/CFS since I was 12 , but I’m also a two time DUI survivor/victim with permanent neck and back injuries. I noticed there is a definite link between my mental state and my level of pain. I’ve had two disk replacement surgeries on my neck. I noticed that when I feel bad anxiety or have one of those days where I start the “ what if’s game “ I start to physically feel worse AND I experience SEVERE cognitive problems directly after for hours or days . I was an aspiring model in South Beach Miami Florida. I was sick but still able to function relatively normal and keep a job until I was hit by a drunk attorney. This was the first DUI I survived. My face was cut , my collarbone broken and I was in a coma for 5 days with a head injury. My life completely changed direction in one day . I feel for those suffering with this AND suffer with chronic debilitating physical pain. Many people misunderstand this disease. I agree with you that your pain levels are different and more sensitive with ME/CFS. For me personally it has been very difficult to explain this type of what I call “ moving phantom pains” to doctors. It moves and feels different from physical pain caused by trauma or injury that is obvious. This neurological pain feels completely different. It is difficult to describe ....it is like hot pins or electricity that moves and gets worse if someone touches me even slightly. Those are just my thoughts .. I truly believe 2019 will be a year of great breakthroughs in science and in better understanding of this disease and how to prevent, treat and cure it . I am so happy to hear you are getting married ! I enjoy your videos . Thank you for all that you do you are encouraging to many ! Take care !!

[@zonkedclub7681]

Candice Ford thank you so much - I will also look up that doctor. Sending best wishes.

[@pbro.oscarvillalpando4297]

I take 6,000 mg of Omega3 from The Zone Diet for my ME, It has helped me very much. God bless you.

[@debmansbridge3923]

Hi Gary I am the same this week definitely having a relapse mind numbingly tired doesn’t cover it , and like you in a lot of pain and have been prescribed Iburofen 800mg 2 tablets daily , seems to have eased a little of the pain and headaches but this only covers 2 weeks and already on second week 😔 like you I tried to avoid painkillers as it masks the problem and not a solution. Thanks for doing these vlogs it means so much to CFS community as a whole 🥰

[@anitacraighead7038]

I just got this video today...but what you've said are almost identical to me. Pain, fatigue....yet guilt. I'm on Pregablin, as well. Been fighting M.E. since car wreck in 1978. Horrible.

[@holz3811]

I too have me/cfs been suffering with all my symptoms for 3 years was only diagnosed in February this year. I can completely sympathise and agree with all that you have said in this video. My pain is always in the bottom of my head, my head feels like a lead weight sat on my neck. And I seem to be getting more and more symptoms arriving monthly. I am taking Amitriptyline for my nerve pain but more often than not it hardly touches the pain, helps with the restless legs at night but that's about it. I am really struggling with the guilt too but after watching this, I have come to realise that I need to start accepting my condition and start being kinder to myself. It's easy to let this slip though with all the pain, discomfort and frustration that comes with this condition. Wishing you all the best for the upcoming wedding x

[@holz3811]

Please ignore the previous post about 'your upcoming wedding' as you posted this last year and I do believe you're now married. Perfect example of how my brain works hahahaha!! I hope that you both had a lovely wedding and you were able to fully enjoy it!

[@TiaSnoozy805]

I'm glad I found you( not th you were lost, I am) I miss life 💙 I hope u are well and safe -

[@patriciajoyner9871]

Oh my.this sounds like me.i don't have official diagnosis.the pain at the base of my head !!! Legs kill me hard to walk. Even went to the e.r for my head.

[@Tearsofasilentheart]

Thankyou so much for your videos. We've just got over easter and i was stuck in bed absolutely exhausted. I have Lupus and Fibromyalgia but how you explain ME/CFS is the same. I think i have CFS but no diagnosis yet. The fatigue literally wipes me out for days.

[@BigFatSteamer]

According to the specialist Chronic Fatigue Doctor, my recovery so far from severe ME/CFS has been somewhat miraculous (I know every case is different, but i hope my story can give some hope). I'm a 22 year old male and I've had ME/CFS for nearly a year now. Before I got sick, I was in the gym 6 days a week. I could run half marathons without a second thought. My resting heart rate was 46bpm. I've never smoked. Never done any drugs and drank alcohol once a month (if that). I was hospitilised with severe tonsilitis 10 months ago. After being discharged, my health slowly declined over the next 6 months to the point where i lost 14kg bodyweight. I was bed bound, sleeping 16 to 18 hours a day. If i ate anything more than a bowl of soup, my body would go into paralysis for 30-60 minutes. Every time i got on my feet i felt like vomiting. My whole body would ache to the bone 24/7. I had brain fog, difficulty speaking at times, tinitus so extreme it felt like my head was going to pop, headaches and no mental stimulation because any form of concentration made me sick. My parents spent thousands of pounds on doctors fees, specialists and every blood test available but there were no abnormalities/ notible results. I thought my life was over because of the lack of answers and became depressed. I admitted this to a doctor and infuriatingly, they then blamed my illness on mental health issues. It was only recently i got my official diagnosis. Nowadays, i'm back in the gym and can run 3/4 miles on a good day. I'd say i'm about 70% right compared to what i used to be but i'm getting stronger each week. I can't pinpoint an exact thing that sparked my recovery, but i believe there are a few significant factors. 1) Mental wellbeing. I read that having (understandable) poor mental health while chronically ill can amplify symptoms by 600%! I then escaped my depression by imagining my worst enemy was torturing me, pressing a button which triggered all my symptoms so he could laugh at me. Sounds silly, but instead of dwelling in self pity, i changed my mindset to "i'm not giving him the satisfaction". This completely changed how i looked at my illness. Instead of a massive, ominous burden on my life, i saw it as more of a sick and twisted contest/competition. 2) Diet. Processed foods triggered my paralysis. I kept my diet as clean as i could possibly make it. 3) Chinese medicine. I was lucky to have a local doctor qualified in chinese medicine. I am still having accupuncture and cupping to this day. She also prescribed chinese herbs (tea) which i also took throughout my recovery. 4) Exercise within your limits. (The one i was least disciplined with) My eyes start going blurry when i'm reaching my exertion limit before eventual crash, so i know my parameters. Set loose targets depending on how you feel that day. Could be walking 10 yards. Small victories. I'm far from an expert/doctor. I know every case is different. I'm just speaking from personal experience of recovering from ME/CFS. I wish you all the best of luck with your recoveries.

[@artdodjer4084]

As a long term pain sufferer i can empathise with you and others im on the gabba's too and yes i feel your frustration i have been on this journey for many years now and it doesn't get better you do have take each day as it comes and take the victories or the better days and just roll with the down days. You friends and family will be with you and will understand when you cancel even at the last minute. gary i work on spoon theory where i have only so many spoons for the day and some days i have more than others, you just need to save a spoon in reserve as you need to be able to get home, if you need a coffee and a chat let me know buddy and keep on keeping on ......................... take the moments and tomorrow is another day. Oh when are you getting married and have you chosen someone to perform the ceremony as im training to be a humanist celebrant and i will be looking to do some weddings....................... anyway as you say being kind to your self is the first step and forgiving yourself and above all allow yourself the time, time to do or time to don't..........

[@zonkedclub7681]

Thank you - some good advice there. Appreciated.

[@sassiecassie5948]

So unwell right now Gary. I’ve gotten sick after a bout of 10/10 pain for days. Now my throat is very sore and I have pain so severe on the right side of my head/ear the painkiller isn’t even touching it. I hate myself to have to take them but sometimes it’s the only thing that helps. Sorry you’ve been so unwell yourself. I slept through the entire weekend myself. (And also had a pity party myself) 😓😭😫🤢 I get a lot of pain in my head/neck/occipital region. One thing that helps without fail is chiropractic adjustments. Thank you for the pain explanations, you put it in a nice way that’s easy to understand. It sounds like you have a pretty good doctor. I can relate to your severity as well this video is a good reminder, I’ve been so frustrated and anxious myself lately over it. I’m just trying to rest and get through the day and hope that I’ll improve a bit tomorrow. Thank you for your positivity even though I can see you’re struggling yourself. I don’t have any sunshine myself but I have had my very sweet kitties to help me get through!

[@zonkedclub7681]

Cassandra, so sorry to hear that, and I hope you’re able to find a way to get some rest amid the pain. I should have mentioned in the video that I too see a chiropractor and find it very helpful. Sending good wishes.

[@marymastandrea2640]

Absolutely almost world of frustrating things I think of running out of food getting here going there what needs to be cleaned what a mess and the pain relentlessnes

[@RyanBetker]

Lol @the cleaning topic. Yeah, some things have to be delayed with CFS. Debating getting a professional cleaner but not when quiet is needed.

[@rachelannbarker6717]

I also suffer from ME/CFS I tried pregablin and it gave me back side effects hope it works for you. I'm also getting married this year if I have to drag myself down the aisle

[@zonkedclub7681]

Thanks, Rachel. That’s good to know. Appreciate the feedback and wishing you well.

[@heatherhartman6474]

Congratulations, Rachel! How did the wedding go?😍💕

[@heatherhartman6474]

Have you tried kratom?

[@joshwhitney7463]

@@zonkedclub7681 Hi , I have secondary adrenal insufficiency which is caused bye pituitary dysfunction. However I believe the doctors are wrong because an MRI revealed a completely normal pituitary with no damage. However my hormone levels are low but none gone completely. I believe this is caused by HP axis dysfunction which is brain dysfunction in general. HP axis dysfunction has to have something to do with CFS/ME. My question for you is do you think CFS/ME has something to do with cortisol deficiency ? Are symptoms are the same. I get the exact same thing as you sore shoulders and lower back of head etc.

[@marilynbyrne9958]

God bless you for your help....Ayurvedic Knowledge has helped me understand about me as a person.....and how the body works too...👍

[@lyonspainter]

Se this was posted in 18. Its now 22. Tell me you have weaned off pregablin. I have fibromyalgia. I was on 600mg a day, coming off it was appalling I'm told it was like heroin withdrawal. Long term use can feel like altsimers . I hope you are managing as best you can.

[@krugerfuchs]

My body hates me

[@lokee7]

Gary, is that a cobweb in the corner behind you?:-D That's my downfall - the ME induced allergies. I wish I had someone else to dust when I'm trying to recover, bedbound, and discover a dusty cobweb! (Just keeping it light - love that about you!)

[@zonkedclub7681]

Lo Kee haha. It does look like it, but it’s just a shadow. That said, I’m not the best duster!

[@pbro.oscarvillalpando4297]

22 years with ME.

[@jeansmyth262]

My husband had a severe reaction to Pregabalin. He had hallucinations and severe bouts of vomiting, In fact I read recently that this drug had been withdrawn in USA because of side affects. I think I read it on an ME website. Maybe start with small dose to test yourself.

[@MP-uo6qd]

Not everyone with ME/CFS has pain. I had pain sometimes usually in my thighs and legs but not all the time.

[@3fishesinatank806]

So I have discovered as time goes on, the fatigue is always terrible, but fibromyalgia will start, and then there's real Hell. Stay strong. Plz look into the dangers/withdrawal of lyrica and Cymbalta drugs. There's a group on fb called Cymbaltahurtsworse. Please look up support groups for lyrica as well. Well wishes from America.

[@3fishesinatank806]

The neck pain is often a side effect of some drugs... if you stop the drugs the pain at base of neck will go mostly away after 8 months or so. But then the migraine headaches will start. Many of us have been were you are now. You are not alone.

[@3fishesinatank806]

You may also get restless legs, again a side effects of drugs...it gets better if stop drugsr,sort of, but staying on the drugs will not do much good, learn about tapering the drugs if you decided to stop them.

[@zonkedclub7681]

Thanks so much. Really appreciate you taking the time to watch and your feedback.

[@candiceford2142]

My mother has CFS and she almost died coming off of Lyrica . She was a fitness model and bodybuilder . When she got sick the doctor was giving her 400 mg a day ! She went from being bed ridden for two years after getting sick and put on Lyrica to coming off of it and turning into a completely incoherent person . She would shake uncontrollably, could not feed herself , bathe or dress herself. She could not talk and her eyes would dance back and forth unable to focus . I spent three months taking care of her , removed her from her home and fed her an all organic high vitamin and protein diet . I also did a whole lot of praying . I thought she may die . But she’s better now ! Be careful with Lyrica is a very dangerous drug and it does not affect everyone the same .

[@goddessvibes08]

Can anyone tell me if uncontrollable muscle twitching and spasms are part of ME? Or could this be caused by benzos? I'm at the end of the rope here

[@eileenhartman8290]

I'm sorry for you. I have had M.E for 37 years. The trouble is doing to much means you will crash and burn. I have done all the treatments, diets , supplements, therapys available. I'm 69 and have no quality of life. I just battle each day. I had breast cancer 4 years ago. Now I also have fibromyalgia. The worst thing for these illnesses is stress. Meditation is good, and massage for the muscle knots. But true M.E never goes. People that say I have recovered, either never really had M.E to start with, or only had it a short time. Good luck my friend.

[@caprica1963]

It's one of the most debilitating illnesses ever, and the worse part is you appear healthy & well when you actually feel battered & bruised all over, 24/7. Like fighting an invisible enemy with no respite or little chance of ever winning the battle. I describe it like being a Madame Tussard Waxwork, ie you look fabulous but can do zero lol, 😉 Having over 20+ years experience of these conditions, first & foremost is being kind to yourself & not beating yourself up daily about the things you can't do anymore. Also stop reminiscing & looking back at your past life & what was.. it doesn't help... deal with the here & now only. Just getting up, making the bed & getting dressed can be a major achievement.

[@marymastandrea2640]

So five different bills not knowing which ones Targets. It.

[@ARI-wc6xd]

You say you love your croissants. Seems like you are leaving out the big part of managing your fatigue and pain. Eating gluten when having CFS is just making things worse. Video is 4 years old, don't know if you still not aware about diet.