Is Looking For Treatments Stopping You Recovering From ME/CFS, PVFS(long-covid), Fibromyalgia & POTS

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  • เผยแพร่เมื่อ 21 ธ.ค. 2024

ความคิดเห็น • 29

  • @sylvanadankerlui4596
    @sylvanadankerlui4596 4 หลายเดือนก่อน +2

    I do understand what you’re saying and why you’re saying it. But I also want to thank you for educating me. Your videos have helped me find my own way to recovery. I’m not 100% what I used to be, but I can somehow live my life again. Again, thank you ❤

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน +1

      Yes, research was key to my recovery - as long as we balance it with action, we in good shape. Glad to hear you are doing well - keep going.

  • @mimflatt8447
    @mimflatt8447 4 หลายเดือนก่อน

    I have avoided looking at this video until now. I'm glad I watched it and what you've said resonates with my 14 year experience of living with this. Every time I see info about cfs I go into the depths of despair and feel hopeless that I can ever recover. I am totally overwhelmed. I just got your book off my shelf and closed it once again. I've been trying to live a "normal" life when I have periods of wellness then I crash and fall into illness, depression and feel there is no point to keep on living, although I won't end my life as I don't want to burden my kids and grandkids with that horrible experience. That is honestly the only thing that keeps me here, but what sort of existence is that! I'm sorry to be writing all this but I really need to let it out

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน

      Sorry you feel so challenged. Yes, it's a fine line between researching and benefiting to create amazing change and going down unhelpful rabbit holes.

  • @ianhobbs8296
    @ianhobbs8296 4 หลายเดือนก่อน +1

    I just love your book Dan. "CFS Unravelled" contains the importance of using brain rewiring as well as showing which ailments and health professionals to seek to address what makes up the big picture.
    When I first read your book it so galvanised my own recovery story too, I just hugged your book. If only one doctor had all the answers! Don't give up till you get there folks. Many people have made amazing recoveries, don't believe there is no cure. Medical practitioners are not aware of brain retraining which is a major part of recovery. Find your path, CFS no longer drags me down after 35 years of struggle!!! God bless. 😀

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน

      Thanks for your positive message Ian

  • @fionamort5837
    @fionamort5837 4 หลายเดือนก่อน +2

    I suffer from fibromyalgia these past 16yrs its absolutely awful, am tired & cant sleep i have to say my Drs in Northern Ireland don't seem to care am left isolated, I've lost both parents in the past 3 & half yrs i ended up with chronic inflammation my Dr was treating me for fluid it was just that a trip to the hospital i was told by another Dr, ive got an bulging hernia just under my breasts, at the moment am on a flare-up ive no energy i cry all the time am suffering from severe anxiety, the pain, headaches i feel that my legs are carrying weights, God bless anyone suffering from this debilitating disease, thank you for your video everything you have explained that is all me, 🙏🌹❤️☘️

    • @EdellKhan-i7p
      @EdellKhan-i7p 4 หลายเดือนก่อน +1

      Hi Fiona I am also in ni diagnosed over a year ago. Would u like to chat? Edel

    • @Helen-pv4wy
      @Helen-pv4wy 4 หลายเดือนก่อน

      Hi Fiona, I send you my best wishes, and the hope that you find the power to follow a course and free yourself from this rotten illness forever. (Like I must do), love Helen.

  • @rhondaevans4509
    @rhondaevans4509 4 หลายเดือนก่อน +1

    I took your REWIRE program. I never completely recovered but I do still reflect on the steps in your program. I can remember what each letter stands for except the first R. Please refresh my memory. I big I took the program in 2019. Thank you! Rhonda

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน

      Recognise the Trigger. Glad you did well with the program, but I do encourage you to keep seeking a deeper recovery. Remember that the program wasn't solely about brain-training - the key to unlocking that last bit of recovery is often understanding WHY we got ill and distancing ourselves from the recovery process and engaging in life in the last 5-10% of recovery.

  • @macsmiffy2197
    @macsmiffy2197 4 หลายเดือนก่อน +5

    We’re convinced my daughter’s “fibromyalgia” started when she had the Moderna Covid vaccine. We’ve had Pfizer and Astra Zeneca, so we’re not anti vaccine, but there are things about these vaccines we were never told.

  • @petejames9366
    @petejames9366 3 หลายเดือนก่อน

    Been this way for over 20yrs now 😂
    Sleep hormones nutrition infections exercise…showing up for yourself each day and even then little progress is really difficult. I have improved in many ways though no thanks to any medical professionals or institutions

  • @tomwoods1725
    @tomwoods1725 4 หลายเดือนก่อน

    Please know your knowledge helped me to beat Fibro

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน

      That's wonderful to hear - how long have you been recovered. What did you do?

    • @tomwoods1725
      @tomwoods1725 4 หลายเดือนก่อน

      @CFSUnravelled1 I had issues with severe muscle fatigue, nerve pian, neuropathy, and sleepless night. All the symptoms of fibromyalgia. My doctor put me on pregabalin 100mg. I had ok days and not so good day. After about 2 years, I then started to look at TH-cam, I found you and others on the subject. I did read your book and other books. I tried to find the common denominator. I can't say what was the one thing that helped me, but eating good food, working on my sleep, and working on my mindset all helped in my recovery. For me, it was educating myself, changing my attitude on things. Seeing that people have beaten this made me hopeful. But I had to do
      It, not a doctor. Yes, they did help, but I had to find the answer. I also would say praying and prays from others. Happy to say, I am off all meds, just supplements, and very active AGAIN! Thank you!

  • @ellerose007
    @ellerose007 4 หลายเดือนก่อน

    I've spent a fortune of specialists, all with different approaches, meds, treatmentments, it has boggled my mind. At this point they're not getting any more of my money. I know & recognise what works but it's having to train them to listen on how many years it's taken me to realise what works for me. Yet they ignore me & wanr me to take their approach. Plus im the worst ive ever been. What do i have to do other than shout from the roof tops to get a professional to listen!

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน +1

      If you listen to recovery stories - you will find common themes in people's recovery journeys - they are not some kind of miracle treatment from some specialist. They usually include addressing physiological and psychological stressors, scaling them and retraining the nervous system. Have you watched any of the interviews? cfsunravelled.com/cfs-fibro-recovery-stories/

  • @jessicanilsson5941
    @jessicanilsson5941 4 หลายเดือนก่อน +1

    Is it possible to got weakness in legs arms ? Have a sensitive system

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน

      Yes many people have weakness like you describe - but all symptoms should be investigated by your doctor in case it's something else.

  • @GodzHarleyGirlStudio
    @GodzHarleyGirlStudio 4 หลายเดือนก่อน +1

    Fibromyalgia is my nemesis. Wish I could get rid of it.

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน

      Well, as you know there is no cure, but people do recover by going beyond symptom treatment. Have you seen the recovery interviews?

  • @Stess-ky4gn
    @Stess-ky4gn 4 หลายเดือนก่อน

    It took me 20 years to get diagnosed with apnea. Sleeping pills are well just easier, for the doctor. Still waiting for help with fibromyalgia. My doctor wants me to get more sleep, but after five and a half hours, the pain. I guess there's no money in it.

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน

      THe key is to do more then simply address symptoms - understanding how the illness works allows you to take a wider approach like you see in all the recovery interviews.

  • @noonespecial5517
    @noonespecial5517 4 หลายเดือนก่อน +3

    If you refuse to keep searching you deserve what you get. Doctors nowadays are a joke. Very few actually do their jobs, and or insurance companies get in the way of them doing their job.
    Do no harm is no longer in their job title as long as pharmaceutical companies line their pockets.

    • @StoptheInsanityofRegressivism
      @StoptheInsanityofRegressivism 4 หลายเดือนก่อน +2

      You obviously haven't fought for 36 years to get help. You obviously are not dehumanized and humiliated enough yet. Research can only carry you so far. You still need a doctor to listen to you and work with you!!! After 36 years of trying and being ignored no matter how much research you bring, all the work and effort is draining, exhausting, and hurtful only to continue being ignored. NO ONE and I mean NO ONE "deserves what they get!!!!" What a hateful judgemental thing to say especially for those of us who have tried for damn near 40 years!!! Try imagining that!!! Try some compassion toward people and think about what they have gone through rather than make a callus and hateful statement like that. What you said is contemptible.

    • @CFSUnravelled1
      @CFSUnravelled1  4 หลายเดือนก่อน +1

      I get how you feel. My sense is that no offense was meant - instead, I think @noonespecial5517 actually shares the SAME frustration as you and is simply expressing it differently to seek empowerment.

    • @noonespecial5517
      @noonespecial5517 4 หลายเดือนก่อน

      @@StoptheInsanityofRegressivism , first, you need to chill. Have you never heard quotes such as , “you deserve what you settle for” ? I said nothing of the sort that had anything to do with not fighting for one’s health. Quite to the contrary. I believe if you do not fight, and choose sit in your muck… then you deserve the results of sitting in your muck. That has nothing to do with a person deserving to be sick and or people not being able to help them. It means you have the self respect to know you deserve quality of life and you move anyone out of your way who hinders your progress towards health and a better you.
      No, YOU must need a doctor, I don’t look to doctors or anyone to help or validate my needs. I can hire them and fire them. If I find someone and they are helpful, great, if not, move on. I’ve learned to take care of my body and seek out those in different fields of specialty for what my needs are, as there are many ways of healing and working with the body. I’m 48 and I’ve been battling ill health since childhood and learned long ago to not need the “western” medical profession except when completely necessary as in an emergency situation. Don’t belittle those who don’t need validation, can keep searching, are fairly good at it and don’t need a white coat to “name that illness” and write a prescription to mask a problem. I also could care less if a “professional “ agrees with my research or not. If it works for me, it works for me.