MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
I think I was pretty fit, but never been good-looking enough to model! (I don't think any dietary change would correct that.)and toned and modelling?
Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I think I was pretty fit, but never been good-looking enough to model! (I don't think any dietary change would correct that.)and toned and modelling?
Sadly, mind over matter can seem to work temporarily - up to a year or more in some cases, it seems, hence the endless stories in the media about miracles happening after trying unscientific treatments, which make some people very sensitive to anything that might seem to suggest this.
I have to agree with @Me Sci that sometimes people with M.E do seem to recover partially when pushing themselves on the lightning process etc, but many of these people do crash further afterwards, and some very badly.
I know someone who thinks of herself as recovered from using lightening process. I find it difficult to talk about ME with this person now because she's now of the mindset that stress is the major cause and mind over matter does work.
I find it difficult to talk to her about ME now because of this; because everything in her mind in relation to ME is now linked to LP.
She was never severely affected though, not ever in the 10 years ive known her, always out and about at meetings, get-togethers, meals etc. she always had a decent level of functioning that i could only dream of.
Its been a few years now and she's still doing ok! Driving, cycling etc. she's the only person i know who seems to have had long term positive effects from it, though at the same time she was one of the mildest affected people i've met so maybe the leap to recovery was a smaller one than that of a more severely affected. I can barely tell the difference in her from before treatment to after treatment.
and can you or she be sure that she had/has ME?
PS. Ive never mosquitoed anyone in my life i'll have you know lol
My daughter came home for two weeks at xmas the year before this one and I was out and about in my wheelchair everyday with no rests and I was so much better. In fact I nearly recovered there as well but as soon as she left I was ill again.
I've paid a small fortune and none of it has helped. In fact I developed a phobia to m.e thoughts and still can't get it out of my head that thoughts about m.e are causing the m.e. and if only I could stop thinking, I would recover. I am in such a stressed out state about it all and get such bad anxiety every time an m.e pops up, its just making me feel so ill.
Oh and Justy I forgot to add I have candida and leaky gut and I know that can cause anxiety so that won't be helping me. X
I'm still struggling with it not being all in my head although I do want to believe you all so much. The trouble is I find it so hard to believe as I went from bed bound to walking miles each day within two weeks of mickel therapy. The therapist came to my home and I could barely get downstairs. She told me this was all about childhood trauma and I had PTSD. I felt like a massive load was taken off my shoulders and the difference was amazing. I painted the whole of the front of my house and went on holiday walking in the Peak District. I wasn't worried about m.e anymore. But then I suffered some stress in my life and went slowly downhill again much to the frustration of the therapist.
P.s. She also said that my head being wired with non stop thoughts and flashing lights when I close my eyes has nothing at all to do with m.e and I need more time with the physchologist.
Non-stop thoughts, which are normally termed racing thoughts, aren't a part of ME/CFS, but they can occur in anxiety disorder (which you may have), hyperthyroidism, bipolar disorder, and other conditions.
The supplement choline bitartrate can calm racing thoughts.
I was only trying to say that there is a vast difference between feeling emotionally better and supported b/c a loved one visits and getting out of a wheelchair and walking miles b/c a loved one visits.
If someone can do that, they have a different illness than I do. Which is certainly okay and people on here have different illnesses and I was not blaming anyone. I would kill to not have to use the wheelchair even for one hour. I can walk for only a few minutes at a time and even for that I pay the price dearly.
I stand by my point that if Mickel therapy or lightning process or a visit from a loved one can lead to getting out of a wheelchair and literally walking for miles, we are talking about different illnesses.
Yes! there is a point when the commotion of her staying out balances the happiness.@Raines I also feel better when my sister comes to visit every year, she doesn't judge and just 'goes with it'. It's definitely the endorphins though because I do start to feel strained at the 2 week mark.
I agree with you GingergrrlI stand by my point that if Mickel therapy or lightning process or a visit from a loved one can lead to getting out of a wheelchair and literally walking for miles, we are talking about different illnesses.
Gingergrrl said: ↑
I stand by my point that if Mickel therapy or lightning process or a visit from a loved one can lead to getting out of a wheelchair and literally walking for miles, we are talking about different illnesses