Your BIGGEST recovery resource for ME/CFS & Fibromyalgia
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- čas přidán 3. 08. 2024
- We often feel like we don't know what to do - like everything is too hard when we are trying to recover from ME/CFS or Fibromyalgia.
You ask yourself "who can help me get my health back?" or "What can I do now?"
In this recovery snippet, I talk to you about what I have found to be the biggest resource for people to develop during their recovery from ME/CFS, Fibromyalgia or POTS and MCS.
#GetYourHealthBack #MECFSRecovery #FibromyalgiaRecovery #POTSRecovery #MECFS #POTS #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PosturalOrthostaticTachycardiaSyndrome #RecoveryTips
**MEDICAL DISCLAIMER**: Dan Neuffer, CFS Unravelled or ANS REWIRE do not provide medical advice, and the information available in this video does not offer a diagnosis or medical advice of any kind. The content is opinions and information presented for EDUCATIONAL PURPOSES ONLY, and MUST NOT be used as an alternative to a healthcare professional’s diagnosis and treatment. Only a physician or other licensed health-care professional are able to determine the requirement for medical assistance. Please seek the advice of your physician or other licensed healthcare providers if you have any questions regarding a medical condition.
A very much needed video for those of us who push ourselves too much and too hard, trying to do it all….. and feeling like a failure when we can’t. Thank you.
I learned the hard way about relapsing after three serious flares, 4 and five years apart. I realize now to listen to my body and not my mind that wants to do too much!! Even too much exercise can trigger a flare.
Dan, you’re doing a great job. This world need more people like you.
Agree!
I’m nowhere near where I was before I got “sick”, but I’m also nowhere near my worst. I used to feel like it had to be all or nothing. After several years of life passing me by and things (to do list) building up around me, I decided to do 3 things every day. In the beginning that could include just taking a shower. On my worst days, it could be sorting mail throwing out junk mail, getting a shower and cleaning the litter box. But I made myself do 3 things. Eventually I was able to do bigger things then more things. Every once in a while, I still have a day I need to just rest. So I rest, but do 3 small things. It helps me not feel like I’m failing.
I love this idea! Thank you. This helps me so much! 🙌
It is hard to get hope. To keep fighting. Especially when you are alone - no family and no friends to support or help. And you are also fighting to keep your job.
Now imagine you live with your parents for example and they think you are just lazy? So you are at home, but you can't relax, because they are stressing you very hard.. I would LOVE to be ALONE at home. So I can FINALLY just really relax without any guilt that I am "doing nothing and that I am lazy lol..." and thinking what my parents are thinking and have to say etc.. Trust me this is much worse like be alone.. Omg give me 3 months in some lonely house in the woods just me and nature and I will heal in no time..
I'm sorry. I can't imagine trying to hold on to a job. Try connecting with people through the internet if you can so you don't feel so alone.
Dirk I think it's best coping alone to some extent hopefully we would receive LESS criticism on our already difficult situation without having to worry about others comments and impractical suggestions not always wrong though. Less pressure on us.
@@jirihutecka9020 totally agree with you. its better to live alone rather than living with people who torture you mentally emotionally etc.
my dear friend, you are not alone. We have God always be with us. He is The All Loving and All Powerful to help us out from trouble
im like you struggling too with CFS . its already 10 years. no family no friends. I only have God. and i pray to Him non stop and He send help via kind strangers.
of course there are many times i cried due to immense torture received from people around. And that make me more realize that this world is not our home. Our home is in the Hereafter
lets pray that God gives us strength and the support we all need dear
With the prayer of success
Siti
Malaysia
@@jirihutecka9020 Both situations are two extremes. Ideally you want alone time but also emotional support when you need it.
I love that! Progress,not perfection! What a revelation! Thank you!
My almost 40year journey. Thank God for my Husban Robin that walked with me through these storms. Find what uplifts your soul mind body and Spirit and heart. Spread a smile love and encourage people they need it just as much. THINK GOOD POSITIVE thoughts, read God's word The Bible Daily Great source of encouragement .
Can't sleep til the sun comes up, can't wake up early and perform basic daily duties. I'm sure many of you can relate. Then suddenly out of the blue I'll have a decent day and I'll try to ride that wave as long as possible. It's quite a desperate situation. But I'm still working on it! I got a spreadsheet I record a bunch of daily metrics so I can intelligently make adjustments in my life through numerous experiments. And I believe I'm getting somewhere even if I'm just getting a better view of how bad I'm doing, it's a start. Diet, sleep, mental activity, all your habits, the deeper questions about life.. We gotta put it all together and come up with answers. Maybe it's not about our petty little individual lives we're suffering over that this is all about. Maybe it's a bigger thing, something we've been chosen to deal with to raise the collective conscience, just by suffering through this and making it better off than the worst place we'd been. Because we're coming up with answers to life people who don't suffer like this can. Every day work on it and keep hope and strength. Good luck ya'll.
I have the same issue. I can’t get on a normal sleep schedule. I spend up to 16 hours daily in bed because of pain. I have a hard time sitting for more than a couple of hours. I’m functioning about 15% of what I’ve functioned at for decades.
I could've wrote that first half of your story myself. No matter how tired i am, i never fall asleep till daybreak. I tell everyone that i've turned into a vampire. On a silly note, i had my DNA done several years ago and it turns out i'm related to Vlad The Impaler!
Decided over Christmas blizzard to limit 6 hour 30 mile trips to doctor restricting trips to doctors to closer North location. Also bought more stable mattress set. Growing new ability to drive has been delight after too much isolation.🎉❤😊😅
Trying to break out of the "boom & bust" cycle is challenging.
Dan, your insight is more helpful than any I've heard in 22 yrs of FMS. Thank you so very much, it truly is in the little things! Baby steps..and those ARE possible! Wishing you the same encouragement in your struggles! Your words are so sensible and kind on the ears. :)
I always say I WILL get it done but it may take all week or longer. I have many other illnesses the big ones are Neuromuscular Scoliosis, Fibromyalgia, MECFS, CPTSD are just a few. I have some days I can but a lot of times I cannot. This is good stuff thank you. Positive reassurance there is help and healing.
Well said... I was listening to my own story. Fortunately I came to the same conclusion and step by step I managed to recover.
That's great to hear - congratulations. How did you recover? How long have you been well?
You’ve got the best tone and voice. Easy to listen to. Thank you.
Thanks, Dan - this was exactly what I needed to hear tonight to be kinder to myself. There is so much pressure from family and from the outside world, esp. when they don't understand what is going on. I will aim to be more systematic, and focus on consistency over intensity.
Recovery from CFS is similar to recovery from damage done by anti-depressants and protracted withdrawal. Many of the symptoms are identical and the non-linear progress is the same.
I've been pretty much bed bound for about 4 years and I know exactly what its like when life gets stripped down to figuring out how to achieve the basics for survival. I don't have a wife to take care of me, so its been challenging.
This video was very helpful and a timely reminder for me because I'm currently in a wave after feeling a lot better, its really difficult to accept being sick again after feeling like I had made some progress. When I start to feel better, I make the mistake of trying to do too much. The energy and motivation feels so good after not having any for such a long time, its hard not to make the most of it.
Glad you have made some progress.
The key is to take setbacks in your stride - I think Brenten described this well in his recent recovery interview.
But yes, staying within your energy envelope as it expands is really important for most of the recovery journey. Towards the end, it's OK to push that, but until you get to around 80%, it's wise to be gentle!
Thank you for your reply. I listened to Brenten's interview and what he went through resonates perfectly with my own journey. I've ordered your book, I'm hoping it will tie up some loose ends in my understanding and serve as a companion during the rest of my recovery.
Jen K you're saying its difficult not to make the most out of all your energy when it comes back.. you are therefore consciously admitting you arent willing to do whatever it takes, in this case that would be being disciplined on pacing...
CFS Unravelled where does one start ? Overwhelmed with so much info from the info on internet.
It's about taking little steps - I suggest you start with the series of short videos about how recovery from CFS/Fibro happens - cfsunravelled.com/how recovery happens
Thank you,again. I eventually figured some of that on my own. I have a lot of frustration that medical people rarely acknowledged symptoms, much less offered suggestions for dealing with them. I got more support from others I met going through the same things. So while I can slooowly figure things out, I really appreciate your reinforcement to keep taking small steps to get to a better place!
Thank you so much for this wonderful video. I found you today when I was feeling the worst I have ever felt. You are a very positive person. I'm so grateful to find you and I subscribed immediately. Thank you and bless you Dan. I'm going to share your information with other suffering people . 🤩😇💤😮❤ This is an elderly woman of 73 but closer to 74..Thanks. Happy new week.12-15-19
Thank you Dan for the little reminders that we sometimes need!
Thank you! Little steps and focus on progress. I had watched this a couple of years ago but I really needed to listen to this today.
Thank you for your understanding and encouragement 🌹
I loved this! Thank you for the reminder. It took me years to learn that accepting M.E relapses was my quickest was back out of them.
Thank for the reminders. .I am able to go out and about because of the gupta course....one year later and dlipping more but fibro myalgia still gone thanks to Gupta''s amygdala traiming.... I didn't really fully get it and believe I fluked a part recovery.. Now I know you can't stop half way.. It's a long term commitment that you have helped me to understand... enjoying the course ANS tremendously..
Thanks Dan for giving me the hope and belief that I can recover and get my health back. Looking forward to take that journey soon.❤
Thank you Dan for these words of wisdom. It's been 28 years and I've been going through a 4 month serious energy crash that is quite frightening since I now live alone with 2 cats that depend on me. This reminder to force myself to do baby steps is most timely. So glad I discovered your videos, and so glad you recovered.
How r u now
Some days the only thing getting me moving is knowing I have my cat and a foster dog who need to be fed and toileted. Can’t walk the dog because she’s so reactive and I can’t control her yet.
Amen
@@prathamrballal1229 I just stumbled across this video again. I had forgotten I left a message a year ago and I just saw you left a message back asking how I am. Well, in a unexpected twist, 4 months ago I got diagnosed with cancer. Needless to say, the Fibromyalgia/chronic fatigue concerns I've had for 30 years immediately took a backseat to the cancer. Since that diagnosis, I also tore the cartilage in my left knee and am now on a waiting list for knee surgery. This happened 6 days before my cancer surgery was scheduled. The surgery went will and I am currently in the middle of 6 weeks of Radiation treatment now. The Radiation is a rough ride, but I managed to avoid Chemo. What do I make of all of this? Well, I just turned 67 and it seems I am getting a lesson in the importance of living life one day at a time, and staying in the moment.
My whole life I've been a bit of a worrier, and it got worse when my lovely husband passed from cancer when I was 59. I believe we are all here to learn lessons; to gain in wisdom, patience, faith, fortitude, kindness and compassion. So my current focus needs to be on trusting that both visible and invisible support will always be present to help me to get through whatever comes my way. I should mention that when my very clean living husband was diagnosed with stage four cancer (a big shock!) I prayed harder than I have ever prayed for anything, that the Fibro and fatigue be lifted so I could keep him at home and care for him there rather than having to send him to a care facility. And it happened. The fibromyalgia and fatigue disappeared within a week and I could do everything I needed to do for the next 6 months, as he continually declined. He had to go into the hospital for palliative care for the final 3 weeks and as soon as he did, slowly all my Fibro symptoms crept back in. I have accepted that, for whatever reason, these illnesses were a form of destiny for me and him. Both my husband and I are deeply spiritual people (we even have a wonderful Indian Guru) who love nature and animals, watch what we eat, take care of ourselves etc. I guess I'll find out what this was all about when I rejoin my husband. I wish you all the best in your journey. I think that you will find that whatever is going on in your body and your life, you are actually much braver and much stronger than you imagine. All the best. ❤from 🇨🇦
@@debitopia not all dogs benefit from dog walking especially reactive dogs. This video is about doing the best you can which the person obviously is doing. Many people wouldn't be bothered with a reactive dog. Try a bit of compassion for your fellow human beings you don't know that the dog would have a better life elsewhere and that walking it wouldn't cause it even more stress, like your mean comment causing its owner stress and impacting their health.
Luv this snippet, Dan. You've articulated so well the "catch 22" and have described my own slow process from bed bound to living life much more fully again. You're so right that taking steps gets more manageable as one progresses, by doing what you u can, where you are...no matter how small and insignificant the impact of your choice seems. Thank you for this vid, and all you're doing to help those suffering with this illness.
Thanks for your comment and congratulations on your recovery progress!
Little steps can have huge impacts over time, as they allow us to take bigger steps.
Hope to share your story of recovery on cfsunravelled.com one day. :)
Thanks, Dan! xx
Such good advice Dan. This is what I have discovered works. Same as you in bed then up. Then do a bit more each day. Gradually recovering. But very up and down. Found diet helped. Good clean veg diet. Removing toxins. Meditating and bodybrushing. And being positive and determined...Faith Canter books.' Living a life less Toxic 'and 'Cleanse' have helped a huge amount. Also Faith's you tube. And freedom Movement. I will recover no matter how long it takes..being negative keeps you ill.
Like you say only you can get yourself on the path to recovery.
Alternative holistic therapies help too. As I was not prepared to be written off by "theres no cure" from the Doctor's. Do you own research is the best advice I can give. And never give up..No matter how many times you crash...xxx
Thank so much, for what you said in this video. I'm from Chile. Found your chanell recently.
Thank you for your insights. That is vital for people how want to get on the recovery path.
Exactly what I needed to hear today.
HOPE is now closer than the horizon...Thanks for your positive ENCOURAGEMENTS!!!🌸
I've been battleing Fibro 32 years. I'm tired. Of everything. Of Drs. Dead ends. Hearing its depression. Anxiety. Maybe I'm bi-polar. Can't even enjoy sewing anymore. Every muscle in my body starts burning and locking up as if I had a very hard workout after a long illness. The thousands of wasted money, therapy, books, medicines with horrible side effects. I'm done. Just biding my time.
Thank you for sharing this video. Very encouraging
I totally agree with everything you're saying that makes perfect sense and yes sometimes it's better just to do a little at a time then trying to push yourself to do stuff when you really can't do a whole lot
What about when you constantly HAVE to push yourself, when you have other health issues and have a disabled incontinent husband to care for with no family nearby to help. Social services are only interested in his welfare. I feel weaker each day, losing weight, cannot go out, I’m disabled too and need a wheelchair but not because of fibromyalgia.
Wish there were some answers
Thanks for this video. I started to feel better and thought, wow, this is great !, and I went full speed on being physically active and then started to feel bad again and it really depressed me soooo bad and I thought, is this it, am I done for, can I make a full recovery and feel like me again. I learned by your video To give it some time and not expect too much at once. It just sucks on the days I don’t feel any energy and it weighs on the mind.
Wow this progress however small that's great encouragement for us with ME thank you for your words
With ME illness what we need is hope and we must make even small changes for progress I love that encouraging video thank you there's so much more to life than putting up with ME let's focus on making small steps
Fits right in today... on my path to recovery. Thanks Dan!
Great to hear Terry - hope to share your story one day! :)
CFS Unravelled me too!☺
Thanks, I needed that 💜
Thanks to give hope, I did buy your book CFS unravelled, and I believe it’s a wonderful book to understand fibromyalgia, otherwise it is just an unsolved condition very difficult to understand..Thanks..
So true and this was very helpful. We can climb a mountain one step at a time. Thanks
Glad it was helpful!
I have been in this situation, but the Doc's back then just told me it's in my head, go see a shrink. I became suicidal not because of the disease but the Dr's neglect - till I met a famous Neurologist named Dr. Charles Echols (even helped Mohammed Ali). With proper medication, I taught myself to walk again and so on. Lately though with all the new "drug laws", I'm being taken off the very meds. that have helped me so much, and as a result I am all but bed bound again - no relief from overwhelming pain, panic attacks now, constant anxiety and the feeling that my life is in immediate danger - these new docs and nurse practioners will be the death of me - reality time!
I agree with what he's saying but when you do something when you feel better it can knock you back so you never seem to get progress without relapse
Very helpful, and peaceful.
Glad it was helpful!
I am glad this worked for you. I have been offline since 2018 and I have not felt remotely better one day since. Getting out of bed is a major accomplishment but my headache and lungs hurt more the longer I lay down. I can no longer relax on the couch laying down. I shower maybe 3 times in a week. I believe my breathing is greatly affected by my issues, I am on 2 separate steroids plus Salbutamol to help with breathing. I didn't believe they were helping at first so I stopped taking them for 2 days, big mistake.
I used to love cooking, now I do whatever is the easiest to prepare and sometimes I miss supper because it is too much. I have not yet received a diagnosis and my doctor is not interested in giving one. I sleep between 2 to 5 times in a day, between 5 minutes and 5 hours at a time. My Neurologist has been giving me multiple prescriptions at different times for depression that supposedly help with headaches but none have. They all have nasty side effects and most mess with your sleep. I was prescribed Nortriptyline recently, it did nothing for my headaches but a side effect that he forgot to mention was that it messes with your sleep and can make it difficult to breath. I took that medication for 2 months and one week, it made me overtired and my lungs hurt more than my new usual to breath. Personally I would highly recommend having someone else in the exam room to represent you. I have been told by multiple specialists that there is nothing wrong with me.
I just received a notice from Canadian Pension Plan Long Term Benefits that I do not qualify for benefits due to me still being able to work. I have no idea how they reached this decision other than my doctor is not willing to give me a diagnosis. I am appealing that decision. If I was making this up I would be BBQing every day and taking my truck that I modified for going off road, off road. It does not take long for my pressure headache to get worse when riding in a vehicle and taking Advil Extra Strength Liquigels helps bring the pressure back down to my new normal but does not fully alleviate my headache. I have not been off roading or kayaking since my issues started in November 2018 and in 4 years I have put around 3500km on my truck. My wife sees that as a sign that I am giving up so I am keeping it. I hate watching it slowly deteriorate and not get used.
I struggle to pay attention to tv programs and movies due to brain fog, I also struggle to spell words I never used to have an issue with. I would describe my issues as Moderate to Severe. This all started when I was diagnosed with 3 hernias, only my Umbilical hernia required surgery. Since the diagnosis is when my issues began. At first I believed it was LYMES disease due to getting 2 tick bites while scouting a spot to remove my kayaks out of the Thames river a couple months prior. Not one doctor mentioned ME/CFS as a possibility. I did my own research on mystery illnesses. The first video was a TED talk of a woman who had issues with noise and lights. I do not have those issues so I scratched ME/CFS off of my list, luckily I found a few more videos of people sharing the majority of my issues, few seem to have issues breathing.
I am a 52 year old male and this is not my idea of retiring early. I always wanted to get another snowmobile. My first and only was a 1979 SKI-DOO 5500 BLIZZARD but I found my grandfather's ELAN single to be the most fun. I have been in love with SKI-DOO's newer Expedition LE wide track but if I won it I would have to sell it because I could not spend any time riding it.
I have posted on multiple CZcams videos because I have needed to know that someone understands me and I feel more information is better. This is a very lonely issue, family and friends have either stopped talking to me or I see that face of doubt, some are even jealous that I am off work. If you cannot do anything it is not so much fun.
I take MCT oil. Im poor, so to take this product ,it must be worth it right?!
Without it I cant concentrate on normal hobbies or tasks, I drop things, forget what Im doing and cant count ie 12345 um where was I? And have to start again. I knit , so this isnt funny at all. I make so many mistakes and mess up my projects over and over. MCT has given me my brain back. I also do intermittent fasting about 70% of the time (no food at all for 16-18 hours per day) Im used to it now so far from being a hardship, it goes unnoticed ; I dont get hungry till mid-afternoon. Cider vinegar or lemon both have had notable effects on chronic pain.
@@satsumamoon I've noticed that recently. The more I researched I found 2 things that made me into Lazarus!:
Electrolytes (An ME fellow said "Ultima" I tried others, but the calibration must be *what* does it for me not being bedbound)
2) VIT D level 35,000/40,000 IU by a popular Doctor speaking about Autoimmune issues. That has me able to leave the house!
(This isn't Medical Advice always speak with your Doctor)
Thank you so much for your videos and work in helping others. It is a daunting condition. Your videos help in having hope and making the effort to break through the maze of this dis-ease. Is there a video on how your journey began?? I had a horrible viral infection and my immune system collapsed. My brain was badly affected. I will always keep striving and working to be completely well again. It is my life’s mission🌷👍. Thank you for your support.
That sounds pretty typical Stephanie - here is a video about my first symptoms : czcams.com/video/6zGezWq4NC8/video.html Hope you like it.
Thank you so much!
You forgot to say that FM is very easy to make worse. If you use some of the energi you use to nurture being sick to became better, you will eventually get better. As you point out, little by little. Small steps at a time.
Maybe I should mention that I have had FM for close to 40 years. Being a single mother with a full time job was extremely hard at times, but I have had a very good life so far, and still have.
Remember: You are still the person you were before you got FM. Be that person, with a little less energi. DO NOT BECAME A DIAGNOSIS.
Thank you. I recall how I initially felt at the very worst. My fatigue was so great. I could only get up to use the bathroom. I was literally flattened exhausted. ... thanking God, he led me to all the right doctors.. extensive research .. online help. .. I agree. Indeed, WE are the ones to take the illness and work with it... not fight it. .
What did the doctors recommend? The doctors I've spoken to were mostly useless.
I've had 3 good days since collapsing in 2009. 3 days where I woke up actually feeling normal and spent the day that way. They are as bewildering as the disease itself because I have no idea what I CAN do and I remain terrified that exerting myself will put me right back into it. I'm just finally getting to the point where I realize I need to stop fighting and rest before anything else but I have one more month to keep trying for too much because my son is home from school with me. I'm looking forward to September very much, with the hope that with resting I might finally trigger this magical relapse I keep hearing about but have never experienced. Trying to live up to people's expectations because they think I'm faking has just left me no space to actually try and get better.
You need to prioritise yourself and find a healing environment by taking the load off. Forget other people's expectations or their stupid 'faking' thoughts - your illness is real and doing whatever you can to feel better is essential.
This is so me. I gave up after 25yrs suffering my daughters don't care or understand. I lay in bed and stay out of the way 😭
We are certainly in the same boat. My daughters gave up on me also. But I am trying very hard not to give up on myself. Best wishes I wish for you a recovery. ❤
Great encouragement Dan but what if your doing ok & it all starts up again? I've had many times when I've been managing quite well for a period of time & then wham!! It all starts again! Is there ever really a proper cure?
I got a viral infection 4 months ago and had fatigue since. The first two months were the hardest, I was bed ridden and when I'd wake in the morning as soon as I opened my eyes I already felt exhausted like I'd ran two marathons back to back with flu before I even moved a muscle. After two months that extreme fatigue left but I still feel fatigued, worn out most of the time. I can work again now, three days a week and walks to work and back which is 7 miles in total and then fall asleep and wake up exhausted. It does pass but sometimes it takes awhile and I have good days and bad. I fear that it will become chronic and last more than 6 months, but I'm hoping that I'll make a full recovery soon. My hands and feet also feel weak, tingling sensations mostly in my hands effecting my thumbs. That comes and goes too. I just really want to get back to normal and be healthy again, I loved going for walks in the countryside for hours and hours at a time with my camera taking photos. I just want to be normal again.
Hi James - the key when getting over a nasty flu is to give yourself plenty of rest - so don't 'push' yourself, but seek to increase your resting and stay calm - being worried about it becoming 'chronic' really doesn't help. It's a bit disconcerting when it happens, but hopefully it'll be behind you very soon - just be kind to yourself. :)
@@CFSUnravelled1 Thank you, I am continously telling myself that I will get better, there are days where it can get to you and you fear the worse about it becoming chronic, but still for the most part I remain positive that I'll be back to full health.
James Carson are you feeling any better?
Yes I have been through all of this. Bed bound. Doing more bit by bit.
Getting better. Then crashing. Again and again.I was suicidal when bed bound.Decided this was doing me no good at all. Then switched to positive. And researched recovery stories and became on a mission to beat this and recover..I've done this alone. And it's been the toughest journey of my life. I have had 40 years of assorted ill health. Including near fatal sepsis.in ITU. But CFS is the worst of the lot. I am very mentally strong. But today I totally lost it. Was crying ,screaming swearing at My husband who does not understand. !!Just how hard this is. Nor does the family or Consultant.!!!! Its such a lonely journey. I am human. I cant stay strong and positive all the time..sometimes i just want to give up ...I am through the worst.. of this illness i hope.This is hard for your relationships too. Marriage. Friends. All your tips are great advice though Dan. I am in a real downer today...I think its sheer frustration at my situation. It's such a slow recovery..But i have managed to reverse my hypo adrenal. Non existant corstisol.Hypo thyroid. And allergic asthma. Anemia.On my own as no bloody help from Endo.whatsoever!!. I'm tired of researching. Tired of the battle. I work alot on my mental health with EFt and mediation. And have help from The beautiful Faith Canter...But its dragging me down
I have been waiting 2 years for CBT.which is all the UK nhs offer.
I wish there were more online support groups. Do you have one Dan? Just someone who understands...I don't know how much longer i can do this on my own...? .
There are Facebook groups for me CFS. Dr Sarah Myhill protocol has one too.
Thanks
I am house bound. So happy to hear that term 😔
Thank you. I'm not nearly as bad off as you were. I'm going to be changing Dr because I don't have confidence in the Resident I have had. I don't think she's experienced enough to take this on. I have been on depression meds since 7/1998 and am now on the max of what I am taking (venlafaxine). I also have lymphocytic colitis for which I take Budesonide and have it under control. I think it became CFS in the last 2--3 years. I used to joke about having sleeping sickness because I wanted to sleep so much. It has only been in these last 2--3 years that the exertion part has come in. If I have to go to town for an appointment, I am done in just showering and washing my hair. But I still get dressed and go and manage other errands as well. When I get home, I may only have enough left to unload the frozen food and put it away and have something easy to eat, usually something I got in town.
However, from listening to you here I see I'm not so bad off and maybe if I can get myself to add doing something besides sitting and watching videos (I don't have TV), I won't get all the way down like you were.
I do use a walker and always hope for a riding cart for at the store, LOL. I have I'd call it severe lower back pain which has also gotten this bad in the last 2--3 years. With so much having gotten worse in the last 2--3 years, makes me wonder if something phycological happened to trigger it all.
I have had a scoliosis for over 50 years and it has gotten progressively worse as I was told it would (now 70°). But only hurting so much in these last 2--3 years. Very puzzling 🤔
I will try doing a bit more each day when I'm just at home and get that new Dr and see what happens. I keep thinking about the best Dr I've had and remember complaining to her about being tired and she would say you have to bring me another symptom, LOL. She's retired now darn it!!
I guess my mind is so foggy, that it all sounded mumble jumble to me. To make this to work, first goal is to have an unfoggy brain because just living doesn’t even make sense anymore.
Hang in there Yvette! Things will get better! Sending hugs.
Atleast you can type .we need to take one step , that was the core of the message
Yvette Jones-Chung to make this work you just need to think positive thoughts and push yourself to believe that you’re going to heal. Thoughts are very powerful.
Hope things have started to be able to calm down a little. I get so many flashbacks to my part reading about your foggy experience. I had Very Severe ME with no ability to think or find words, stand - and the slightest sound was like cutting/screaming torture.
I finally got diagnosed two years back with Severe ME (incl. POTS, Chiari, intrachranial pressure, hupermobile EDS, MCAS). The turning point for me was getting a functional medicine practitioner (put me on detox herbs, water with lemon, vitamins, told me to go off gluten, dairy and sugar - and go organic with food and home products)
+ THE BIG CHANGE FOR ME = Biodynamic Chraniosacral Therapy treatments, where you just lay flat and the practitioner with their extremely light touch feel and guide your owns body systems energy blockages etc. and helps it to find its own natural “calming down/healing mode”.
I have stuck to the BCT treatments religiously - had them 1-4 times/month for 5 years. My body and fascia has adjusted and released so much during these years. Sometimes I get worse after treatments - because the body is releasing and adjusting, but it’s worth it when looking back and comparing to where I was 6 months before.
I still have a lot to learn about my own personality (behaviour and thought patterns etc.); how to be grounded, not stress, push myself too hard etc.
Nowadays I can write, speak and think very well (even though I need to rest a lot), I can handle noice and more things going on etc. I can watch, for example, new tv-shows and focus and take in everything and at the same time enjoy them. I can sit several hours in a car and feel relaxed opposed to years of total severe 24/7 stress mode which made every waken and sleeping hour into both mental and physical living torture in hell, like I was in a state similar to a women in giving birth 24/7 nonstop for years on end, except there is no baby and you at the same time need to try to function.
Love to all of you! ✊😐💕🌸🌳☀️
I’ve been bedbound on and off for 10 years now and my condition has gotten worse this year leaving me extremely ill and debilitated. No such thing as permanent progress for me just lots of ups and downs and mostly downs this year. I work so hard towards recovery and don’t know what else to do....
Sorry to hear things are so rough. Look, the first thing is looking after yourself emotionally - it's such a rough journey. I wrote a book that I took off Amazon to give away for free - you can request it here: cfsunravelled.com/discover%20hope/
Sonic Faerydust
Exactly
Lost my legal career, personal life, and sense of self. Mostly hopeless and on the rare occasion hopeful.
True...I feel like I hardly got started rather than lose anything ....I was 14 years old....54 now. I hope this approach works, wasted so much money that I didn't have.
@@mandyg5747 same here. I'm 43. Most seem to pin point a certain time in their life whereas with me I don't remember when 'it was good'. I was just more innocent as a child but was sickly and had psycho/sociological problems but I suspect that's more the case than most understand. I think that proverbial car crash or deadly flu or whatever trauma just was the catalyst to get that snowball rolling so fast they couldn't ignore it any longer. Getting dreadfully ill doesn't knock a normal healthy person into cfs. I'd reckon most of us were knocked off a healthy path at an early age, perhaps even in the womb, depending on how/what our mothers were doing. Anyway, good luck. I never give up hope and imagine the day when I look back on my 'worse days' saying 'I knew it. I knew I could overcome this'. Keep plugging away. When you can't move you can think, you can write, you can plan, experiment, research etc...
I'm new to this channel and want to if a certain diet is recommended?
I have Lupus for 3 1/2 years now but my Fibromyalgia was finally diagnosed beginning of 2020 after what I'm sure was covid and it set my immune system into chaos! My Fibromyalgia has been mostly in a flare since..... I also have Interstitial cystitis as well now.
I'm desperate to feel better without anymore drugs, I take for my cystitis!
I've been pushing myself to get out of bed for years now. It takes so much positive thinking just to face the day. However I truly believe that our mindset helps us live a better quality of life but full recovery takes a team and being younger helps. The disease is inflammation in the brain and more substance P in the spinal fluid so it's not all in the mindset. Some people go into "remission" I prefer to say "are healed" but not being healed is also not your fault...it's still an actual disease.
In such a deep fog that I don't know if I am alive anymore...
Pain reminds me that I am still being punished with illness...
Almost unconscious, barely could move...not sure what and why I am writing
Weather changes can be quite brutal.
Heard all this before already preaching to the choir. Wanted to do ozone therapy but bcuz of covid training for this therapy at a local well ness center shut down. Nearest ozone clinic is 90 minutes away. Can't go. Just hanging in there.
How do you do showers in small steps please.
I was always a go getter person. This last 7 years has destroyed me. Right when my own health was deteriorating, my terminally ill brother had to move in with me, and I had to care for him for two years until I had to place him in a home, where he died two months later. And in the year my brother moved in, my mother and other two brothers all died unexpectedly. The year my brother went into a nursing home, I finally had to quit work and go on disability because my health got so bad. I’m still struggling a lot. I’ve had 4 back surgeries and about 43 invasive procedures of my spine, hips, and hands. All to try and control nerve entrapment and pain. The last couple of months I’ve been doing a little better but have so far to go. Don’t know what to do to improve.
Sorry to hear that Sherryl - sometimes with chronic illness there is no obvious fix - sometimes we need to focus on progress not a 'cure' - so little things that can make you feel better can have value.
You are so right! We just do what?? Maybe I want to go get a haircut or go get food!! Some time can’t yes sometimes I feel good!! But we have not too much!! I also sad!!
Hi From Germany 🙌
I really Hope that you can Help me..does your Programm also Work for Lyme? I am bedridden cause of lyme and coinfektions since 4 years now 😢 and very very desperate and helpless. My Body doesnt tolerate antibiotics or treatment s .
Before lyme i also had CFS,but could function. But nothing works and my Body crashed totally. It's a nightmare,i live alone 😢 and have lost everything
is ur program similar to lightining proccess?thanks for ur videos
I have never done the LP, but from what I am told there are some elements that are similar.
However, ANS REWIRE goes way beyond 1 brain training process - it has many approaches that can be customised. Further, brain-training is only 1 component as I believe a multi-lateral approach that also supports the body to heal is key.
I've had me/cfs fibro for years. I got covid twice. I just feel like giving up. I'm so weak and feel souch worse than ever.
A very sensitive comment.💞
💁♀️from Austria
Bed bound but in physical therapy...but have back problems.
Could you kindly provide examples of what you are talking about?
I’ve been sick with ME/CFS since the 80’s and have tried every thing available to me during the last almost 30 years.
I have found nothing provides lasting relief from the symptoms and the perpetual relapses. Currently living in a year round hot, humid climate is wrecking havoc on my body and brain. How can small steps be taken to move forward in this environment? Relocating is not an option. It is all overwhelming.
Thank you so much for validating this illness.
Symptom relief is difficult - frankly, I never really had much success with that during all the years I was ill. I try to help people to focus beyond symptom treatment - to focus or recovering from the syndrome as a whole (at which point the symptoms abate). The key is understanding how the illness works - this blog might be helpful for you cfsunravelled.com/neuroplasticity-recovery-from-fibromyalgia-mecfs/
CFS Unravelled thank you.
Progress that's right. Every day move forward a little more. From toilet than back to bed; to make a call then bed; put a wash on then bed; send an email then bed. Post a letter then bed. Put the slow cooker on then bed. Set something to work before returning to bed was my rule. And my life moved forward.
Give examples so people will have an idea of what a step in recovery is ....I know it’s going to be different for everyone .....however it would be helpful....fibro has claimed many aspects of my life for 15 yrs. my first foot in recovery was being diagnosed.....this took 2 yrs with my family Dr yelling at me......eventually I saw a rheumatologist.....who was my foot forward. I fired my G.P
LA🇨🇦
You may recover of postinfection cfs but ME is lifelong. It is cynical chat about recovery while we urgently need medication.
How can nothingness=something?
My family and friends do not believe me...think I am taking...huh????
They sent friends then and the stress fires it off more
Just got a new doctor and she says that fibromyalgia isn't physical. She doesn't know what she's talking about, that's for sure.
I understand steps give us purpose, but beyond that... Talking about recovery on a chronic illness that has no cure? Uhm... It may have the same effect on some people but for me it's just not real. Talking about steps in terms of willingness more than in terms of capability (socioeconomic scale is an issue, for example, since this kind of diseases usually need many alternative therapies to manage pain, nausea and other symtoms)? It seems to me out of line, sorry. Not saying it isn't your case. Just that, in my experience, CFS usually comes with other comorbidities very difficult to manage with and without CFS. Just to mention a few things and to mention one reason.
Where are you in recovery - how about nowhere like most of us with these disorders.
Sad but true Scott - many of us flounder for years, sometimes decades. I hope the resources on the websites help you move forward in some way now.
Without captions it very difficult to understand what he speak. Quite useless for fibromyalgia sufferers as it is useless.