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Two Barbaras down
25 Replies
barbar - December 1

Well, Barbara number two is calling it quits, too, only I'm calling it quits to everything. My latest bout with fms lasted almost a year and a half. Even when I'm out of the bout, I still need 7 painkillers, including fentanyl, to get out of bed. A good day is when I can smile. I'm all alone, just me and the birdies. There's noone there in case I fall. There's noone to help in an emergency, noone to take care of me as I age. I'll end up warehoused in a facility curled up in pain. I've been in touch with the Hemlock Society but I was raised Roman Catholic. Those theological binds will be difficult to overcome but all I need is winter. First, I will make sure the birdies are well taken care of. As for how, in addition to having fms, I am a diabetic. I will lock myself in a room with dozens of my favorite donut from Duncan donuts, the glazed jelly-filled raised (and maybe some French curls and New York---not Bavarian---creme). I'll also have boxes of Butterfingers and several Enntemann's holiday logs (you gotta try one; they're only out for the season). They'll be right next to the Balboa Creme Brulee cheesecake (might have two of those). I'll also have a Junior's coconut lemon cheesecake and three dozen peanut butter cookies, the soft ones, and several boxes of Archway's Mexican Wedding cake cookies. Of course I'll have to have my bananas. It's the right way to go. Just eat my way to release. You realize this is a joke. Still, many of us have considered this. There are days when it seems as if that's the only answer because it's not just the pain in our bodies, it's the loss of functionality and the brain fog is so great we can't seem to connect to the outside world. This was a place of joy. The best manner of relief from our agonies. Why would anyone want to destroy it? (This part is not a joke.) Our bodies don't work. The muscles don't slide over each other when we move the way they are supposed to. We haven't the strength walk erect because the pain drags us down. I always said I could take anything as long as I had my mind. I have an IQ over 200 but rare are the days I have access to it. The brain fog makes me look ignorant and stupid on the job, incompetant and lazy. Here was a place where others understood, when rare moments of clarity brought humor and insight. It wasn't just a place where we could come and be cared about. MORE IMPORTANT, it was place where we could come and care about others, a place where we could exercise our hearts. It threatened someone. Can you imagine? Our relief, our peace, threatened someone enough to cyberkill. I leave you in prayer and with love. I have to go, the pizza's here.

 

larry - December 2

Barbar- I know this might be hard for you believe as you probably feel like you tried everything but there really is help in reversing this syndrome. I am living proof. I am open to a dialog if you wish to learn more. I can be reached at [email protected]

 

JJ1 - December 4

Hope you don't mind me asking, but Larry, are you a "kathy" (as in the e-mail address you provided) or a "larry"? if you are a kathy, mind sharing why your user name here is "Larry" (or vice versa, if you are a Larry why is your e-mail Kathy)?

 

AmberRose - December 5

i would also like to add that being as taht was one of the saddest things that i have ever read in my whole life...could "larry" every continue beaking off nonsense that caused this whole thing? how disheartning!..

Barbar with what ever it is that you do with your life allways be sure that we are thinking of you and i wish you well and lots of pain free days !

 

Jeri - December 9

that is a scary post. it actually scared me... this is by far the weirdest fibro forum online. i hope you feel better lady.

 

Virgie - December 9

Jeri don't be scared. I think the people just want some substance to Larrys post
like for example if you have IBS then if Larry could post a specific programe for it with an explanation or a diagnosis and make it short and concise..that would be nice.

 

Jeri - December 9

oh... i wasnt scared about that. it was the long post about how that lady was going to eat herself to death! coz that totally freaked me out! thats why i said i hoped she felt better.

 

barbar - December 11

Jeri. I'm still here and fighting hard. But the truth of the matter is that my fibro is very, very severe. Fibro is not supposed to worsen over time but some of us have had other experiences. At the very least, it complicates your other ailments and makes them far worse. hence, my fibro has left me unable to walk; lying on the couch on evenings and weekends applying pressure to the agonies on my side; unable to stretch my muscles; with muscle spasms in my stomach and intestines so severe they are actually visible externally; with severe pain from stenosis, requiring epidurals every three months; and just plain weak, far too weak to do anything. On the bright side, I still work full-time; my office has purchased me a special chair that is wonderful and has made me the envy of everybody else; the birds are chirpy and wonderful and Percy still likes to sleep on my shoulder; and every once in a while, I can get to church. But, truth be told, I sincerely feel as if I am now facing the end-stage of my life and it is only a question of making sure that whatever happens leaves the least burden and is least inconvenient for my survivors. It is a reality---a true reality due to other ailments---that I must face everyday. The posting about eating myself to death was all about things I can no longer have and what a dream it would be---that if given a choice---I could go out happy, make sure the birds were in excellent hands, and rest peacefully in my sleep.

 

larry - December 11

Two things that helped me almost immediately was taking bio-identical thyroid hormones and cortisol among many other hormones. My pains went away within 1 month.-----As far as fatigue, I add oxygen to my water everyday and am amazed on the difference it makes. It makes sense fibro patients have "thick blood" , lacking oxygen. ....Medical recent studies have shown that the coagulation dysfunction in FMS patients is usually initiated by a viral infection and has genetic predisposition. This abnormal coagulation results in increased blood viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog). Neurotransmitter abnormalities and macro and micro nutrient deficiencies have also been shown to occur with these disorders. Gulf War Syndrome, which is almost identical to CFS and FM, was found to have a parallel cause.

 

barbar - December 11

Fine, Larry/Kathy: Where do I go to get fixed?

 

Amyloo - December 11

I would love my fatigue to be lessened; how do you add oxygen to water? Is is something you can purchase? Thanks, Amy

 

larry - December 11

AmyLoo, I used aquagen revitalize oxygen supplement. Their website is on the bottle- aquagen.com. If you have viral and bacterial infections in your bloodstream they will stay there until you get oxygen in your blood. This is just a quick fix of a symptom, does not address the root cause but can make you healthier overall. Good luck

 

JJ1 - December 12

Larry, what studies (reference please)?...................."Medical recent studies have shown that the coagulation dysfunction in FMS patients is usually initiated by a viral infection and has genetic predisposition. This abnormal coagulation results in increased blood viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog). "

 

JJ1 - December 12

Larry, never mind. I plugged in some of your words and found the article. If you are not Kent Holtorf, M.D. with the
Hormone and Longevity Medical Center, then you really should put quote marks and references for your exact quotes of his writing. Interesting stuff though.

 

JJ1 - December 12

OK, now I get it..........................
.................."Kent
Holtorf MD is a CFIDs survivor who has used his personal experience of treating more than 3500 patients with CFIDS/Fibromyalgia to fine tune a successful treatment algorithm. Dr. Holtorf is currently a founder and Chief Medical Officer of Fibromyalgia and Fatigue Centers, Inc. with offices located in Atlanta , Cleveland, Dallas, Denver, Fort Worth, Houston and Los Angeles."

 

larry - December 12

I never heard of this guy so I just checked him out also. I found him at www.hormoneandlongevitycenter.com/ and I also read his article at immunesupport.com from 2003. It says somewhere that he joined the Fibro and Fatigue centers last year as the Chief Medical Officer. Very interesting. Did you read abut the 6 components/stages of addressing this syndrome?

 

JJ1 - December 12

Larry, Funny you never heard of him because what you stated above is a WORD FOR WORD QUOTE from his paper (go to http://www.immunesupport.com/li
brary/showarticle.cfm/id/4320).
Here is your quote: “…abnormal coagulation results in increased blood viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog). Neurotransmitter abnormalities and macro and micro nutrient deficiencies have also been shown to occur with these disorders. Gulf War Syndrome, which is almost identical to CFS and FM, was found to have a parallel cause….”…………………………
……………………………….Here
is the doctor's quote:….” abnormal coagulation results in increased blood viscosity (‘slugging’) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog). Neurotransmitter abnormalities and macro and micro nutrient deficiencies have also been shown to occur with these disorders. Gulf War Syndrome, which is almost identical to CFS and FM, was found to have a parallel cause.” ………………………
…………………….M
y
concern is that you write posts on here as if they are in your own words and as if you have some level of expertise in this matter, but it appears that you are just cut and pasting from articles written by the fibro fatigue center. If these are not your words (i.e., if you are not Dr. Kent Holtorf) then you should not be using his words as if they are your own. Legally, you should be using quote marks and citing him as a reference at a minimum.

 

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