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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Perrin Technique on DVD

Messages
4
Location
UK
Hi Cloud I have been ill (with countless periods of remission and crashes) for 24 years. The Perrin Technique is really the only treatment that has made a significant difference to me in all that time. It is definately worth trying it, especially now that your health is slightly improved. I know six other people who have tried it with varying degrees of success. Good luck!!
 
C

Cloud

Guest
Thanks Jill, I have calls out to many natural practitioners here in my area to see if anyone does the PT here. This area has many natural and alternative health practitioners....something will come up.

Off topic a little....I hear so many stories on the relapse/remission nature of this disease and that for me raises concern because it has not been my history. I've been sick with progressive ME/CFS for almost 17 years now. The disease progressed from mild to severe with no remissions over the first 15 years. Sure I did thousands of crashes followed by a return to baseline after a period of time....but never a real remission and then relapse...just a steady progression. It was only because of anti-viral treatment that I came back from severe this last few years.

The relapse/remitting stories worry me because they go against my belief that I am finally now recovering. I believe that just as I had become progressively worse, I am now becoming progressively better. I have learned the lessons on not trusting this disease on smaller scale ups and downs....but do I really need to do that large scale? In other words, regardless of how well I get, should I look at this as though I have a disease that will always need to be managed out of concern of relapse? So many stories of real remissions and relapse say that I should. But then I don't have that history. Can't afford any more learning by my own mistakes...I would rather learn this one from others.
 

Lucinda

Senior Member
Messages
118
Location
UK
I've been having Perrin treatment for 3 weeks now and have to say I have felt a lot worse :( I know that you supposed to get detox symptoms, but what has happened with me is that my problems with being all wired and agitated has got worse. I just can't relax, even though I am exhausted. I've also noticed my noise sensitivity has got even worse, which I never thought possible. It was already impossible to live with!

Does anyone know why my wired problems and noise sensitivity would get worse with treatments? And whether this will calm down with time? It's really distressing me. My fatigue is pretty bad so I really need to spend a great deal of time in bed, but I just lie there feeling all agitated and tormented and can't settle down. So I get out of bed to ease my restlessness, but then I'm really fatigued and can't function, so I go back to bed and can't relax, so get up again, and this just goes on and on and on...
 

Tom

windows exterminator
Messages
94
Hi Lucinda ,
Are you doing daily self treatment .?

If yes , it may be too much for you . Consider not doing it all , or not doing parts of it.
If no , you should have been shown the head massage/ combing and nasal release breathing also cold/hot compress on the thoracic vertebrae . Just do these to see if it helps.

It was after 6 weeks or so before I started self treatment and then not every day.

Tom
 

Lucinda

Senior Member
Messages
118
Location
UK
Hi Tom

Thanks for replying.

At the moment I am just doing the breast, back and neck massage everyday. Before that I was trying to do more (the head stuff, nasal, hot/cold, exercises) but I wasn't coping as I found it too much to do whilst dealing with worsening symptoms. So my therapist said I could simplify it and just do part.

Ok, I'll try not doing it everyday. Would taking some supplements also help? I know you mentioned Milk Thistle and something else but I've been feeling so rubbish I haven't looked into it. Tbh the only reason I can type and think straight at the moment is because I finally gave in and saw my acupuncturist yday - when I'd planned on giving acupuncture a break as it's tough affording acupuncture and Perrin - and it has at least temporarily made me feel better. So I have a window of opportunity at the moment where I feel well enough to look into things that might help me.
 

Tom

windows exterminator
Messages
94
Hi Lucinda ,

Might be better giving up ALL self treatment at this time until things become a bit better.
or just the cold /hot or just do cold.

Remember that its your body and you know best , there is no rush to get better .

The supplements were Milk Thistle ( don't think this will cause any symptom upheaval) and Enhansa ( this will cause upheaval over a period , and I would suggest giving it a miss untill your other symptoms have settled or gone).

Tom
 

Lucinda

Senior Member
Messages
118
Location
UK
Thanks Tom. I'll give up self treatment for a bit then. And maybe I'll try Milk Thistle. Does it help the body detox?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Ok, I'll try not doing it everyday. Would taking some supplements also help? I know you mentioned Milk Thistle and something else but I've been feeling so rubbish I haven't looked into it.

Tbh the only reason I can type and think straight at the moment is because I finally gave in and saw my acupuncturist yday - when I'd planned on giving acupuncture a break as it's tough affording acupuncture and Perrin - and it has at least temporarily made me feel better.

So I have a window of opportunity at the moment where I feel well enough to look into things that might help me.

thought that you might be interested in community acupuncture: http://www.communityacupuncturenetwork.org/clinics#International doesn't seem to be much in the UK, but perhaps there is a another/better website?

GG
 

Lucinda

Senior Member
Messages
118
Location
UK
Thanks but I wouldn't change my acupuncturist.

In my experience, acupunturists vary a lot. Some aren't very good at all. I feel very lucky to have found one who is so good at what he does.

Plus I really like him :)