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anyone else who doubts their symptoms?

Ambrosia_angel

Senior Member
Messages
544
Location
England
I keep wondering if I'm just imagining my muscle weakness, tiredness etc? I feel so doubtful because we are constantly bombarded with this stuff.

I always convincing myself that I didn't wake up one day and my brain just decided you have leg weakness and chronic pain from now on? I even tried to do little leg lifts while standing the other day to see if my fatigue was percieved or true and I couldn't do more than a few before I became tired but I'm still doubting my brain? Anyone else? I also ignore new symptoms because I actually convince myself I'm mental and I'll waste the drs time. I'm totally opposite of a hypochondriac lol

I've got to the point that I don't care about my health. I just want to get better.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
my sister drove us (her husband and I) crazy over her denial of being actually sick (a state she went into after a couple of doctors basically treated her like her symptoms were in her head). She was very good at convincing herself she wasnt sick.. yet she wasnt doing things like cooking dinner, cleaning house and was laying in bed a lot .. but on the other hand.. she'd tell you she was doing great.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
my sister drove us (her husband and I) crazy over her denial of being actually sick (a state she went into after a couple of doctors basically treated her like her symptoms were in her head). She was very good at convincing herself she wasnt sick.. yet she wasnt doing things like cooking dinner, cleaning house and was laying in bed a lot .. but on the other hand.. she'd tell you she was doing great.

Was she diagnosed with anything or is she still in the same position? At the moment, I'm planning to see a private dr but I actually don't care if it's in my head or not any more. I just want to improve :/ I'll try any treatment other than things that effect the brain e.i anti depressants
 

Ayaju

Senior Member
Messages
160
Location
San Diego, CA
Very timely topic! 16-years-in with CFS, I'm once again having email discussions with my family of origin about how real my CFS is and will they please "hear" me, and that I'm no longer going to try to hide that I have CFS from them or from MYSELF! Largely because of their attitudes I have been in and out of denying/not believing that I have this disease. Well, those days are gone! I will deny no longer, and I will be silenced no longer! I have experienced a great deal of healing lately, and it somehow makes it easier to talk to them about my CFS because I feel they can see that I really am making huge efforts to heal my body, but that even the healing that happens is but a drop in the bucket for how much more healing would have to occur in order to fully heal! And that, hey, some illnesses are simply incurable; it is what it is!

Judy
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
@Ayaju I'm definitely not in denial. I accepted the diagnosis and so did my family. But they don't have any reason for my fatigue. No physical reason. And I can't accept an illness that has nothing proven when none of the treatments I've done have helped. But if the specialist tell me it's in my head then I'll believe them because they can't find anything else. Just as long as it helps.

I'm feeling that desperate now... just as long as no one mentions lack of exercise because that will make me even more angrier than somatoform lol.
 

Ayaju

Senior Member
Messages
160
Location
San Diego, CA
@Ambrosia_angel , Dr. Chia in L.A. believes CFS is an enterovirus. He found it in me with his specialized blood tests. He has a lab draw the blood then send it to him because he knows how to look for it. It lives deep in the stomach lining. He still can't get help or funding from the medical associations because, well, to put it bluntly, they still don't care about us. He wants to get a drug developed to kill the thing, but he can't. He gives his patients Equilibrant which contains a Chinese Herb, and it helps many people. This is how he cured his son of CFS. The problem is, Equilibrant can't be used by everyone, and also it seems to only help a handful of women; it doesn't work very well for women (due to our ovaries, he says). I don't feel comfortable taking Equilibrant because he doesn't advice it for people with autoimmune diseases such as Hashimotos, RA, etc. I believe in his research. The UK has similar research.
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
I feel that way all the time. If I have a relatively good day, I wonder, are those bad days all in my mind? Do I expect too feel bad so I do? I think a lot of this is years of fuckwittage from psychiatrists who think depression caused all my physical symptoms. I do have some blood tests to back up it being a physical illness -- I can't depress myself into high hhv6 levels -- but I still have doubts all the time. I think if psychiatric medication can help you then you should use it. But know that it cnt cure anything, just make life more tolerable.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
@Ambrosia_angel , Dr. Chia in L.A. believes CFS is an enterovirus. He found it in me with his specialized blood tests. He has a lab draw the blood then send it to him because he knows how to look for it. It lives deep in the stomach lining. He still can't get help or funding from the medical associations because, well, to put it bluntly, they still don't care about us. He wants to get a drug developed to kill the thing, but he can't. He gives his patients Equilibrant which contains a Chinese Herb, and it helps many people. This is how he cured his son of CFS. The problem is, Equilibrant can't be used by everyone, and also it seems to only help a handful of women; it doesn't work very well for women (due to our ovaries, he says). I don't feel comfortable taking Equilibrant because he doesn't advice it for people with autoimmune diseases such as Hashimotos, RA, etc. I believe in his research. The UK has similar research.
Who told you that the uk have research :s lol the uk has none for ME except PACE trial and some other stuff. Nothing biochemical based though, not for ME anyway.

Lots of drs have different theories though. Methylation, mitochondrial, retrovirus, GED/CBT. Too many but which one is the actual cause or actually help?
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
@vamah I've never had a psychiatric disorder in my life and I definitely don't want meds for one. I'm just having a moan and wanted to know if other have the same problem lol. Sorry if I gave a different impression
 

knackers323

Senior Member
Messages
1,625
@Ambrosia_angel , Dr. Chia in L.A. believes CFS is an enterovirus. He found it in me with his specialized blood tests. He has a lab draw the blood then send it to him because he knows how to look for it. It lives deep in the stomach lining. He still can't get help or funding from the medical associations because, well, to put it bluntly, they still don't care about us. He wants to get a drug developed to kill the thing, but he can't. He gives his patients Equilibrant which contains a Chinese Herb, and it helps many people. This is how he cured his son of CFS. The problem is, Equilibrant can't be used by everyone, and also it seems to only help a handful of women; it doesn't work very well for women (due to our ovaries, he says). I don't feel comfortable taking Equilibrant because he doesn't advice it for people with autoimmune diseases such as Hashimotos, RA, etc. I believe in his research. The UK has similar research.

What is the similar research in the U.K?
 

Desdinova

Senior Member
Messages
276
Location
USA
No I have no doubts about my symptoms. Unfortunately some of the doctors I've seen had plenty of doubts and suspicions.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
Oh and btw I do have evidence of how my cfs started. Mycoplasma chest infection and I have low vit D. I just meant that those things wouldn't be causing me to get so tired so they have no explanation.
 

Ayaju

Senior Member
Messages
160
Location
San Diego, CA