Hi, my name is Julie, I am 47 years old, I am french, live in Paris, mum of two wonderful young adults boys. I suffer from fibromyalgia since many years, diagnosed officially since 2014 January. My health started slowly declining bc of violences from my ex husband. So much stress and emotional abuse and many many forms of violence. During more than 17 years. In 2017 I had an infarctus, I survived, but my body is so weak and fragile. Every single day is a struggle. I suffer a lot, like so much than nobody can realize. I have no life anymore.

@CFSUnravelled1

2 жыл бұрын

Hi Julie - it' s tough when poor health results after already facing terrible adversity. However, I hope the recovery interviews inspire you to realise that recovery is possible even when facing great adversity. The key is to take small action steps forward every day that move you towards health. cfsunravelled.com/cfs-fibro-recovery-stories/

@openureyes

Жыл бұрын

I understand what your going through I have it for many years I find lots of vitamin d3 and B complex helps also vitamin B1 ,stay strong wishing you healing from mike in Ireland 🇮🇪 ❤🇫🇷

@wendyhannan2454

6 ай бұрын

I understand what your saying, I believe stress can bring on fibromyalgia, and when you have it, new stressful situations can cause a flare up. I hope your pain and life has improved, As I realise this post is 2 years old. Thank for sharing your story. 🙏

I’ve had fibro for over 25 yrs now. Paget’s disease of the bone since my teens. A meningioma tumor on T-7 that was successfully removed back when I was 30. I can walk again but not that well. Afew other things. Bilat hip replacements. I need a shoulder replacement but haven’t don’t it yet. Out of all that, I can say fibro, or chronic pain, is by far the absolute worst. I’m suffering so bad & think about suicide every day. Idk how to make it stop

@Bearwithme560

Жыл бұрын

I'm in the same boat. How are you doing today? 💜

@nurugizani3075

5 ай бұрын

Same here 😢

I got sick in 1989, I got diagnosed in 1995, I have had several times when I was symptom free. This time I can't find my way out. I have other health problems now, as well as several losses. It was nice to find a place to come & hear someone talk that I can actually tolerate the voice lol. Thank u 😊

@Truerealism747

8 ай бұрын

What got you into remission have symptoms changed I have hypomobility Asperger's add genes for it

I just found your podcast, I suffer from fibromyalgia for over 30 years, I got very bad in menopause with other issues, the pain is awful, constantly in pain, some days it’s just to much. I will listen to your podcast and try to learn something new. I do t do well with medicine, so I don’t take anything. Thank u, I’m in Canada

@wendyhannan2454

6 ай бұрын

I hear you, and understand you having trouble with pain meds. I’ve tried many, Tramadol is the only one that works for me, all the others had side effects. I’m no wimp, but I couldn’t manage without meds. It would keep me in bed, and I’d never leave the house. I can’t imagine having fibro for over 30 years 😮 I feel for you.

For someone with auditory processing disorder, I need subtitles to understand most videos. This is no exception. Please consider publishing the transcript, or including subtitles. Thank you. (I have now found there are subtitles after the introduction - thank you :) )

@IceLynne

2 жыл бұрын

I agree, there should be subtitles.

@ejb777

Жыл бұрын

YES!!! The fact that there are no subtitles goes to show doctors don't really "get it". Such a huge portion of ME/CFS sufferers have sensory overload issues.

@CFSUnravelled1

Жыл бұрын

There are subtitles. Also, neither one of us is a 'doctor'.

@misstalulah9063

Жыл бұрын

Hi. Brilliant thank you! I gave up when. Couldn’t get subtitles - following you comment I now have found there are subtitles after the introduction.

@Pedro8k

Жыл бұрын

There is subtitles on this video just click on the cc at top right

Thank you for bringing up this controversial issue that ordinary physicians know so little while we suffer and cannot find releif to our pain.

I pray you are right. It has destroyed my sister. I've heard it's mitochondrial dysfunction. Two broken legs in two years.

@Truerealism747

8 ай бұрын

Anything before the accidents

Thanks again for making all these interviews. It so reassuring to hear how much there is in common between you and Katie's understandings of CFS and Fibromyalgia. And so much hope. I took great interest in the explanations of how constant activity becomes "rewarding" patterns in the brain. And how Katie tries to explain why some people suffer from CFS and don't experience extensive pain. I feel mirrored:)

Thanks for your amazing advocacy and research concerning FM/CFS! Yes, it’s in my head with real physical symptoms. Interesting how the autoimmunity diseases, especially RA and IBS are seen to occur with FM/CFS. Until recently I have been a closet sufferer, out of fear, due to shaming and labeling associated with this real complex, individual disorder. Just as discussed here I have found I’m in the company of very high achievers and have given more to others than to myself. Looking forward to your next podcast! Excellent work!

@joleu8146

2 жыл бұрын

Lol-no white coat syndrome!

@mrsBluueyes

Жыл бұрын

You are not alone. You are amazing. And your mind is more special and powerful than you know. Learning we can retrain our minds and bodies to register pain at a decreased rate is super incouraging. Lets all share this interview and Systolic extinction training with anyone with any type of pain. Here I think the saying knowing is half the battle might be true. God bless you. I appreciate your sharing here.💛

@Truerealism747

8 ай бұрын

IBS isn't autoimmune but for running do you have hypomobility hypomobility is the link for alot o had SPD as a child albeit unknown until son's ADHD Asperger's diagnosis and.my.mums severe ms who had hypomobility Asperger's obviously sensitive to stress

This is such a FASCINATING interview for so many reasons, and I think it has implications in so many illnesses, if not directly, maybe indirectly. Thanks much to both of you.

Dan, I really appreciate that you worked so hard to understand and to clarify much of this for your audience. Keep up the great work.

@CFSUnravelled1

Жыл бұрын

Thanks Paul - glad you found the interview helpful.

This is so very encouraging. I am in Stuttgart, Germany with a diagnosis of CFS. I have been to so many doctors - with no success - none have any knowledge of my condition. The pain and fatigue are becoming overwhelming, but I‘ve all but given up finding relief. It sometimes feel my life is over.

@CFSUnravelled1

2 жыл бұрын

It's very scary. Listen to the recovery interviews and perhaps read my book to help you understand why there are so many different ways people recover. Little steps forward.

@travelmaniac9135

2 жыл бұрын

I completely understand you, but there is always a way. Btw I live in Stuttgart also, if you want we can exchange information & tipps and so on. Keep up.

@CFSUnravelled1

2 жыл бұрын

So viele Schwabenbeutel

@travelmaniac9135

2 жыл бұрын

@@CFSUnravelled1 ja klar:)) Many thanks for this intressting interview Dan

@IceLynne

2 жыл бұрын

I felt the same way and now I'm well. I was totally bed bound for nearly 8 years and now I'm living a fairly normal life and very active with outdoor activities. My recovery was based on ridding my life and body/brain of toxins. Each recovery story is different just like our stories of getting "sick". Please don't give up 🤗

This is very interesting. A lot of it is over my head but I had never heard of SET and always good to hear about new therapies that can help.

I a, sick and tired respectfully of hearing about treatments. People with the condition or any for that matter are not looking for treatment, we are looking for a cure. Pills are not the answer as they are just making a very few very rich. Find the cause, then find the cure,everything else does not matter. Thank you.

This is an excellent video giving needed information on fibromyalgia finding anyone who really understands this condition is very rare it is strange but she reminds me so much of my own doctor who Iam so lucky to have as I have had fibro and other issues for ten years now

Thanks for bringing this to the fore, very interesting research which is obviously going to lead to improvements for many people in the future. I too am following the Rewire program but just not getting to the nitty gritty of the detail yet having been compromised for many many years. I did find it really difficult to tune into what was said and understand the technicalities, practical tips are obviously what many of us want to get stuck into as you know and hoping that there is a way to access some of this soon.

They cant relax because of life today, also because of abusive relationships

Great interview. However, I am not yet buying into the "pain threshold" idea. Or perhaps I just don't understand what they mean by that. It sounds like people are suggesting that the pain in fibro is not really that bad but that it is amplified by the brain and perceived as being much worse than it actually is. I, along with many others, experience true muscle spasms and cramps that can be causd by use of the muscles or by stress, much like people with neurological conditions such as multiple sclerosis. In my understanding, that is caused by chemicals being released from the brain such as histamine and glutamate. Brain retraining works, I fully believe, but perhaps it is more along the lines of inhibition or alteration of those chemicals through neuroplasticity.

@CFSUnravelled1

Жыл бұрын

Glad you liked it Melissa. Sadly pain is so maligned in our society. You are half right in what you say, let me explain. Indeed in Fibromyalgia the pain is 'amplified' (for lack of a better word), but that doesn't mean it is 'worse than it is' - it just means that the pain is greater. In other words, people experiencing fibromyalgia feel more pain - this is a scientific fact, but lets face it, we already knew that from our experience, right!? Yes, there are many many more dysfunctions than solely pain perception and yes, brain-training works, which is what this fibromyalgia treatment was all about.

@Mylifewithoutme2006

Ай бұрын

I agree with you hundred percent. My sister has Fibromyalgia and she can cut herself accidentally and not realize but she has back & body pain amongst other symptoms on a consistent basis. I think someone in high state of pain can get irritated and dislike other sensory stimuli but one can not assume that this is purely due to high pain perception but rather a sensory overload due to fight flight fright response that high pain can cause.

Very interesting podcast, thanks for sharing. Would these findings be related to the POTS too?

Unfortunately it's impossible to understand what this women tries to tell us. Can you make another video where you translate her theories into layman's terms: What is Systolic Extinction Training? Is it a machine? A psychotherapy? Where can one buy this treatment/device? Thanks!

@CFSUnravelled1

2 жыл бұрын

Yes it's a technical video. SET is with a machine, but psychotherapy is added for effectiveness. This treatment isn't widely available as yet, they working to make it so.

Fantastic information! ...although it took me many replays, trying to take notes, until I finally realized Dr. Thieme had mixed up the English word for "adrenals' which she was referring to as "kidney". I sure wish I had caught that sooner and I'm sure you assumed we would. So I totally overdid it which you were just explaining! I didn't want to pause for fearing of completely loosing track of what i had understood thus far. Just letting you know for learning purposes, not trying to complain for negative reasons. I'm my own worst enemy when I get stuck on understanding complicated interviews I had planned to casually listen to.

This feels like really important new information further helping my recovery which is starting to go quite well. Will you be adding captions? It’s very difficult to understand much of what the good doctor says, and it’s fascinating. Not sure if it’s possible to add captions after a video is already uploaded to KZread? Thanks Dan, as always for everything you do. BTW the blue shirt is a good color on you, you’re looking very healthy.

@CFSUnravelled1

2 жыл бұрын

Thanks - I thought it was funny that we were both wearing blue

@wtfhappenedtome

2 жыл бұрын

@@CFSUnravelled1 Is there a transcript somewhere I can read?

@CFSUnravelled1

Жыл бұрын

Right here: cfsunravelled.com/episode-7-top-scientist-shares-chronic-pain-insights-discovery-of-new-effective-fibromyalgia-treatment/#t-1620794147772

@KalujaFlizck

Жыл бұрын

@@wtfhappenedtome You need to relax and you'll get well. Seems to be the miracle breakthrough.

Thanks very much for the video. I am a member of your ANS Rewire Program. I will listen to the interview again as it was quite technical. I understand that the technology won’t be available for some time, but at the end she mentioned that the psychological pain treatment is available. Do you have any specific recommendations for brain training?

@CFSUnravelled1

2 жыл бұрын

The brain-training in the ANS REWIRE program is what I recommend. You will find that it is very similar (although using different techniques) to what Dr Thieme discusses here.

My comprehension is not up to this. I feel that it's important but I just can't "get" it.

@CFSUnravelled1

2 жыл бұрын

That's fair enough. You may find these videos helpful instead: kzread.info/head/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE

And not many scientists or researchers acknowledge that our capitalist system, our school system and our adult responsibilities never stop. The bills keep coming, the children need attention, their parents are aging, and their is no communal support system, in many cases. The Protestant ‘hard work ethic’ which tells us we are lazy when not doing anything, is hammered in from a very young age. Once I quite my corporate job and my grandmother with dementia passed on, and I could finally relax, the pain came back. Of course we are conditioned like this from our ancient ancestors. If there is constant stressors to survive, our bodies and brain had to put that aside so we could make it work. Which is what our modern society still demands, even though we know this is unhealthy….

@Truerealism747

8 ай бұрын

Yes and if we are perfectionist we get it more it was called neurosthenia and wasn't here before modern society 1800 s related to Asperger's

Muscle tension disturbed in fybromyalgia it pop s and cracks where it hurts the most

Thanks very much Dr. Kati and Dan. I am an ANS Rewire member also. Love the program but cannot make it work for me as yet. I have severe FM and am in that catch22 situation mentioned several times in the video whereby not exercising is as damaging as not exercising. I was intrigued however that there may be a practical take away near the end of the video wherein Dr. Kati mentions walking for one minute and asking your partner to do the same, each counting his/her own steps. Then you are asked to reduce the number of steps by 20%. My understanding is that you reduce your partners number of steps by 20% and that becomes your new goal. Dan, am I right about this and could you possible comment a little more, please? Thanks again.

@CFSUnravelled1

2 жыл бұрын

Give yourself some time to go through the program and build your practice. Yes what you describe is right, it shows you that first of all you are engaging in activity too vigorously and then gets you to engage in a less vigorous way.

@barbarada6308

2 жыл бұрын

@@CFSUnravelled1 Thanks, Dan.

How to treat fibro pls help in pain now lm in Swaziland

Transcript is there.

Acupuncture Weekly treatments IS GREAT FOR RELAXATION & FEEL GOOD for 3 to 5 days. 🥰🥰🥰🥰👍👍👍👍👍👍

Can I go for treatment with Dr Kati, Im willing to travel to Germany?

Followed the pod cast and the one thing I was hoping you would cover is the brain fog and memory confusion forgetting world in a conversation still enjoyed it all but only under stand a small amount of the scientific content but hoping to learn from it about stress levels and blood pressure.

@christinelewis2199

2 жыл бұрын

Thank you 🙏🏻

Could someone do a teaching video or write a book on the poor souls who have been Dx with CFS + LYME DISEASE. Have had both since age 5 & has destroyed my life. At 77 I'm going in for spine surgery #8. HELP

@Truerealism747

8 ай бұрын

What are your symptoms of Lyme is it safe to have surgery bwith fybromyalgia

I am reading creatine helps. I just got some to try. I can't even grocery shop without ending up in horrible pain afterwards & exhausted after. Takes me very long to get up my stairs. Had to give up buying spring water & other drinks. Cannot carry up heavy things.

@CFSUnravelled1

3 ай бұрын

Supporting metabolism can be done in many ways and certainly is helpful. However I always encourage folk to go for a wider multi-lateral approach to recovery rather than dysfunction treatment or symptom treatment.

How does a doctor know you have fibromyalgia?

@CFSUnravelled1

Жыл бұрын

There is a diagnostic criteria, but not definitive test at this time.

Social distressors. Being told what to do . Bothersome. Distressing. Medical doctors cause distress.PAINS SORENESS!

Electric shock therapy making a come back?

@CFSUnravelled1

2 жыл бұрын

Well, obviously nothing like electroshock therapy - it's not on the head, or anything severe like that.

B vitamins ease mood swings.