My Story of Being Unwell and Recovering (Long Covid, Chronic Fatigue Syndrome, Mind Body, TMS)
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- Опубліковано 17 вер 2023
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In this video, I talk about my experience of being unwell. I had chronic pain (diagnosed as Fibromyalgia) and food intolerances before I got Long Covid. Then in February 2020, I got a mild covid infection and the symptoms did not reduce. In 2021 I got much worse and was mostly in bed for the year, unable to go downstairs or wash my own hair. In 2022 Low Dose Naltrexone improved my condition, I could walk around the house more and was less triggered by stimuli. In 2023 after coming across the mind body approach I over the next few months I got back to full health.
I'm not a medical professional so this is not medical advice or mental health advice. Seek help from your primary care doctor or local services if you are concerned about your health or mental health.
On this channel I speak about topics related to Long Covid, Chronic Fatigue Syndrome and other similar conditions. I found the work of Dr. John Sarno really helpful, in particular his book The Mindbody Prescription. I also found Internal Family Systems (IFS) approaches useful for helping me learn how to get more aware of emotions. Dr. John Sarno, speaks about Tension Myositis Syndrome (TMS) - a condition underpinned by repressed emotions, his work and the work of his colleagues help many people including those with chronic fatigue and chronic pain.
If you'd like to join my private facebook group follow this link / 692260389210957
Instagram: / mindbodyintegrate
Books mentioned in this video:
The Mindbody Prescription - Dr. John Sarno
The Way Out - Alan Gordon
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Its impossible for people to relate to when there is no outward visible sign of feeling so unwell! Well done on your recovery!
Autoimmune issues! Truths!
so true sadly, I have been chronic ill for 20 years got almost no empathy and support from anybody, you feel completely alone in the world
@@larsstougaard7097 I understand! There is hope , I believe the missing link is the nervous system stuck in a maladaptive stress response! You can beat it when you find the way!
@@mirandaandrea8215 Fully agree , nervous system is key for getting better.
Don't you guys have circles under your eyes? 😅
You have such a nice voice and calm demeanor. Makes it much easier for those of us with symptoms. Thank you!
Thank you for watching :)
Thank you for sharing such a painful time Lucy
Thank you so much for sharing your ill health. I'm 73, and I have been ill for 41 years. And my be even longer. I have cancer for the second time. I have had Covid twice, and now long Covid. I have had ME/CFS for 41 years. I have had Fibromyalgia for 8 years since my breast cancer and the radiotherapy. I went Vegan for 3 years, but became so I'll, and lost two stone. I can't put weight on, even though I try to eat mire animal protein. I did the mind body connection twice. Once with the Gupta programme, and one with the lightening process. Neither helped. I try to meditate and do breathing exercises. I have tried every diet and treatment on the planet. I'm now about to see a functional doctor. So pleased you are well again. I'm not feeling very positive any more. I'm so exhausted all the time. I hardly go any where since Covid 18 months ago. If I do any thing, then I have to pay for it afterwards. I'm sensitive to almost every thing. I have to watch every thing I eat, or put on my body. No one has any answeres. I have spent my life's savings, and got no where. Now I broke. I only have a pension to live on these days. So it takes ages to save. But I'm a Christian. And I trust God will help me. Be safe, and stay well. Lovely story. Xxx💚💜💙💛
Wow, you are so brave, you have been through such a difficult time, I hope you find something that helps you soon. I tried Gupta too and that didn't help me either, I think that it was a bit more superficial than the mind body approach that did help me - (specifically repressed emotions were something I needed to work on) the books I found most helpful were Unlearn your Pain and The Mindbody Prescription. I hope you find some relief soon. Sending you good wishes 💛💙💜
Hi Eileen terrible sorry to hear about all your struggles with illness, I myself have been ill for 22 years with all kinds of problems and have also tried everything under the sun without great success. Saw many doctors, diets, supplements, clean water, yoga, meditation, different healings, therapy and many other things. I found out 11 month ago though that underneath everything is a complex PTSD I had since childhood. It influence everything from brain, body and nervous system that is very out of balance and its hardwired in, so can be difficult to change or takes patience. So maybe you also have some deeper trauma that influence your health. Many with early trauma o, attachment trauma or have great struggle get chronic illness later in life statistic shows. Health is super complex and be very hard to deal with. I watch the "crappy childhood fairy" and Realan Agle on recovery stories, but its all just pieces in your personal puzzle. Sending you big hugs
@@larsstougaard7097 Hi Lars. I'm so sorry to hear how much you have suffered also. Yes I have had a very tough life. I'm starting tests with a functional doctor right now. It is starting with a stool test, to find out if I have a bacteria, mould , heavy metals and so on. I wish you all the luck in the world. And hope you get good health soon. God Bless you. Big hugs back.
@eileenhartman8290 hope they can help you, bless you 🙏
Take mega dose vit b1 500mg perday....vit b complex..vit d 10000iu n vit k...magnesium 500mg
Very well done! Great video. I can clearly see that you are not overstating things and or being in a victim mode.
I know we what you go threw. Stay strong 💪
The account of your journey with long COVID is similar to mine. After three years my friends have finally accepted the fact that I have limited amounts of energy, and that exertion requires downtime later. Being able to swim a mile or more with ease has distilled down to an easy walk at a slow pace of 3/4 of a mile. But, I'm symptom free, for the most part. As an engineer, I'm able to repair most anything mechanical or electronic. Jumping up to help friends with errant machinery is optional, or not at all. I don't like it, but it's better than the alternatives.
What has been of help? Apart from time passing. I've fatigue and no tolerance for exercise anymore 2 yrs now since Cov. I can be ok-ish and then a relapse. Any tips or supplements etc?
Really powerful video❤️
Thanks Katie
Hi thanks for telling your story this condition is indeed very isolating and listening to recovery stories do give some hope to me ❤ could you please tell what you are doing for repressed emotion like any mental exercise I could try??
Iv been like this from after covid 2020, april 21 started to loose my hair, now i can tolerate almost nothing, everybone hurts i cld sleep the clock round, its so destroying, even putting a wash on tires me out, just wish it would stop x
Thanks for this video Lucy.
Do you think you would have recovered fully doing mind-body work without LDN?
I think I would have because many people recover using the mind-body approach without the help of LDN, LDN did help me have more capacity to read about the mind-body approach and it helped me have more capacity in general. But I did also have a weird one-week period where I went from mostly bedbound to fully better for one week about a year before I found the mind-body approach and a few months before I was on LDN. It only lasted for one week and then I started feeling worse again but it shows me that something was able to quickly change in my body despite how severe my symptoms were at the time.
Can you discuss what medications or supplements you went through in all this covid journey please ?
Consider talking to your doctor about Betaine TMG. If you google long Covid cytokine triad you find a study shoring elevated cytokines il-b, il-6 and TNF-Alpha. Betaine lowers all of these key cytokines. Another study found the spike protein of the virus triggers an inflammatory T Cell immune response via TLR4 proteins. Betaine inhibits TLR4 proteins. Betaine also has anti inflammatory and anti thrombotic properties and can increase circulating testosterone that helps regulate systematic inflammation. As it can temporarily increase testosterone do consult with your doctor before considering. Betaine can also help lower histamine along with homocysteine that can cause playlet activation and blood clots and cortisol that can disrupt the immune response to any potential viral persistence as cortisol can disrupt pathogen presentation pathways in dendritic cells and suppress il-8 cytokines that in a form of TB were found to bind to the infection and stimulate CD4 and CD8 T Cells to the site of infection. Again please consult with your doctor before considering. I have been taking a gradually increasing dosage starting at 500mg with breakfast to now 500mg with breakfast, dinner and evening meal. I have seen a significant improvement in my symptoms ie GI issues, bowel pain, headaches, a heat sensation and pain in my left knee and right kidney and with stress or fatigue a numbness across the face. I hope this helps
Did you vax first before symptoms
What medications are you still taking?
How long of mind body work did you do before you recovered? ive seen some progress with DNRS over the past 8 months, but switching to a different approach that uses IFS. I’m 100% sure it’s my brain stuck in fight or flight, getting it out seems to be tricky lol
So do u think a person who already had anxiety or stuck in fight or flight is more prone to long cov fatigue etc?I have this fatigue 2 yrs now since cov. I also had anxiety, trauma prior to all this
Thank you for sharing your inspiring story. It means a lot to a 15month long hauler here who is undecided about LDN. Not sure if I got it right but - are you still on LDN at the moment? If not, did you stop LDN before beginning the mind body prescription?
Also would you say that mind body healing healed you more than LDN did.
Thank you so much 🙏
Yes, I still take LDN, I'm really glad that it helped me because I had such low cognitive and physical capacity before I tried it. But I was far from well a year after taking LDN, I was more stable but I still was in bed a lot of the day and still had bad fatigue and other symptoms every day. So I think without the mind body approach I would have been stuck to some extent, concerned that activity would make me worse, predicting symptoms coming on at certain times of the day. I don't think I would have made as fast and full a recovery without the mind body approach. But LDN did help me as well.
Did you get POTS during your LC or ME/CFS? And did you get PEM or crashes or just had the fatigue?
I didn't get a POTS diagnosis specifically but I had orthostatic intolerance, so really struggled with sitting up and standing and would get dizzy very easily too, and yes I had PEM and crashes. I could do very little without getting PEM when I was at my worst.
I've been watching your UA-cam videos about mind-body training. I need some help and I think you can give me good advice.
I've been trying the mind-body exercises you talk about. But, I am not feeling better. In fact, I feel worse. I am blaming myself for not getting better and this is making me think about suicide.
Can you please give me some advice on what to do? The mind-body training is not making me feel better and it's making me feel it's all my fault. This is very hard for me.
I know you're not a doctor, but your advice means a lot. I am also talking to doctors for help.
Do you think the LDN definitely helped you to recover?
LDN helped me go from being in bed 95% of my day to being in bed 60% of my day and increasing my activity around the house. I know other people that couldn't tolerate the side effects, or for whom it didn't help. There is a chance that my belief in LDN was helping me as much as the medication itself.
Lucy, are you still taking the LDN?
Yes I still take it.
Hi, did you take anti depressant? If yes does it help?
I was prescribed amitriptyline which is an antidepressant - but it was prescribed for migraines. It helped me with orthostatic intolerance and somewhat with headaches, it didn't give me more energy or make me feel much better other than that, I was still unable to do much activity.
Csn this mind body work fir burning mouth syndrome
I haven't personally heard many people speaking about this particular symptom but this link shows a few people talking about it in relation to the mind-body approach: www.tmswiki.org/forum/threads/burning-mouth-syndrome.2444/
Were you ever concerned about the spike protein replicating or microclots etc ? At what point did you decide long covid a mind body issue ?
I remember reading about various different physiological changes, including microclots. But when I spoke to my doctor about them (he's a fatigue specialist) he explained to me the lack of conclusive research and how the treatment (of unclotting blood) could help anyone even healthy people. It was when I read The Mindbody Prescription - that I really bought into this approach.
@@mindbodyintegratethank you for your reply.
Dr Campbell showing the research there now
Sorry for many questions, i am desperate for understanding. Did you have brain fog or any cognitive issues ? If so, Was it mild or severe ?
I did have brain fog and cognitive issues, I would say it was severe for a year because I couldn't speak to people for more than 10 minutes and I couldn't read from a screen or do any mental tasks like duo lingo gave me a migraine after 10 minutes, but this had improved quite a bit for me before I found the mind body approach, however it was still there and did improve.
@@mindbodyintegratethank you for replying.
I had long covid for about 9 months , I was back 100% normal with the mind body approach ! Just got reinfected and I am soooo scared :(
It's very normal to feel scared, make a plan now on how to manage the fear. Write evidence about why the mind-body approach applies to you and about why your body is strong and can fight an infection. Try to generate a cosy and safe environment by doing things you find comforting.
Spelled John Sarnas?
Spelled Dr. John Sarno.
@@mindbodyintegrate thank you. How long has it been since you recoreved? Do you think, you recovered %100?
@@karagumruk7330 Yes I'm 100% recovered, I found the mind body approach in November 2022 and I was building up physically for a few months increasing what I was doing, but by April I was back swimming like normal and had very few symptoms by then.
@@mindbodyintegrate were you bedridden before you start?
@@karagumruk7330 No, when I found the mind body approach I was able to walk around the house and go for a short 15 minute walk, in 2021 I was mostly in bed but able to walk to the bathroom and sit up to eat.
I have pretty much all these symptoms is this a real thing? These symptoms sound like a virus for an autoimmune disorder of some sort
They should not even have a label of fibromyalgia, it is legit tms periodn
TMS?
Long covid = thiamine and magnesium vit d deficiency
Please tell me this is true because Ive been dealing with this for months. It’ll go then I’ll workout and it’s right back with a vengeance! Heart palpitations and chronic anxiety as well! 😭
Wow ur so smart (no)
@@Bait1officialhow many years have you had it has it changed overtime
I have sympathy with your experience with LC. I also understand if you believe in whatever and it improves your condition that's great. However you shouldn't be champion it to others on UA-cam or anywhere else. Dr Sarno's work is no accepted in mainstream medicine. You even gaslight with the old argument that if you don't commit you won't get better. Get ivabradine. Get an oxygen concentrator. Get a paced routine don't torture your self listening to this guff folks.
As if mainstream medicine has any answers at all for LC. Pfff
So what are your credentials to gaslight who u r calling gaslighters
In what way is it 'gaslighting'. It's a sarcastic reply to an nonsensical reply. This channel appeals to desperate people but that doesn't mean it should get away with peddling pseudoscience. Does it not worry you that pseudoscience is being fed to desperate and vulnerable viewers? My only credentials are 20 years of experience. I could list 20 ways to easy ME or LC. Mind Body Integration wouldn't be one of them. Don't give money to grifters and con people. Get yourself over to Science 4 ME.
Well we can see “the science” cured you.
Science hasn't cured me. Neither did Dr Sarno's teachings. What we have here is a very plausible person using UA-cam to attract vulnerable people to her service. It's unethical. She isn't being clear. Forget about her opinions and views. A sales pitch to desperate people that she will help after a free 30 minute consultation. That's unethical. I don't agree with her but at least if she wanted to help other suffers she could do it without charging money. I'd at least have some respect for her. You want to keep rattling my cage about this then I will do something about it. Let someone else decide if it's ethical.
Vaccine injury dear
🥱
❤️🔥🥹🌻 Such a smart healing tactic.