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What shall we call ourselves?
33 Replies
barbar - November 13

I've seen 'fibromites' and just 'fibros' but what shall we call ourselves-fibronians?

 

Amyloo - November 14

Hi Larry, Could you briefly explain to me what exact treatments made you better? Thanks, Amy

 

JJ1 - November 14

Larry - People have different needs and some benefit from participation in this discussion group. Those not benefiting need not chastise those that do. Just let us know what worked for you and we can decide if it is something that will work for us individually. There is a huge range in type and severity of symptoms with FMS so different people benefit from different treatment regimes. Peace.

 

TERESA - November 14

Why are Larry's answers on Barbara's post?

 

barbar - November 14

Teresa, good question. Wonder if Barbara's answers are on Larry's post.

 

Jeanie - November 14

There isn't anything on Larry's post. I never really thought about it, only I didn't like fibromites, sounds like a bug.

 

Virg - November 15

Hi barbar thats a tough one it's going to take me a while to wrap my mind around this. How on earth did someone come up with the word fibromyalgia? All I
know is IDONTWANNABE feeling this way. LOL Virg. Oh, I tried to go on larrys web but didn't get through. Maybe some kind of block here in canada.

 

barbar - November 15

I can't even find Larry's web or his question. I'd like to know what it was.

 

TERESA - November 15

Let's call ourselves Perserverants' : ) LOL!

 

TERESA - November 15

Or Fibro-Fighters

 

Virg - November 15

barbar look for topic 'Fibro makes National News.

 

Virg - November 15

Teresa, those are good ones. Virg.

 

barbara s. - November 15

Hi everyone-- How about fibroids? Oh wait that's taken. LOL. We are survivors!! I don't know why everyone is answering to Larry's post here, but fyi, if you go to the website he mentions, it's just an ad to suck more money out of you for "treatment"

 

Amyloo - November 16

Hi all, I think I can solve the "Larry's posts" mystery: when Barbara originally posed her question, Larry answered her with a post stating "why would you want to call yourselves anything, don't you want to get better, I am better, etc.etc." So I thought I'd call him on it by asking him to specifically name his treatments that have worked so well for him. Well, now it seems his post has been deleted leaving my post looking like the first answer to Barbara. Don't know why Larry's post is gone; maybe someone thought it was poor taste. I was trying to get him to put his money where his mouth is, instead of what I perceived as him being insensitive to Barbara. sorry if it became confusing! God bless, Amy

 

larry - November 16

I also wondered where my post went to. The sad thing is that since most traditional doctors have blown us off for so long that we are skeptical and non trusting so when the real answer comes along it doesn't get taken seriously. I could tell you about adrenal exhaustion, hypothalmus and pitutary disfunction and the broken connection with the thyroid which results in your body's major circuit being blown. This creates major hormone problems and when the stress goes on too long, the body wears down and the pain sets in. The thyroid is responsible for regulating metabolism, all hormones, adrenal glands, hypothalmus, pitutary, etc. This syndrome never gets detected by doctors because the blood testing for thyroid disfunction is outdated, not reliable. Go to fibroandfatique.com if you want to learn about the treatments. These doctors have been trainned to check you for this syndrome. They will show you charts on the circuit in our body and what happens when it gets blown. They then take alot of blood tests on the first visit to check all of the bodies hormones, including the memory hormones, DHEA hormones, growth hormones and the adrenals, vitamin deficiencies, immune system hormones, etc.. My 2nd appt. was 2 1/2 hrs longs as the doctor went thru 21 pages of results just for the hormone testing. I am on cortisol since I now have adrenal exhaustion, I am on BIo-Identical thyroid hormone which was compounded by a pharmacy especially for my body composition. Synthroid -The artifical thyroid hormone is a major problem because it only gives you t4 and doesn't have t3 hormones therefore many people that are on synthroid because of either past hyper or hypothyroidism or thyroid removal will develop fibro. I am also on the correct level of memory hormone, (mine was nearly depeleted) estrogen, progestrone, cortisol, probiotics, thymus enhancer, supplements for my liver as it is being stressed by the weakened immune fighing killer cells, take multi levels B vitamins both IV and pills form, take cells boosters that help open up the cells mitochondria to be receptive to food so that it can be converted to fuel instead of resisting it, natural sleep aids, etc.. I have posted the info many, many times. Unfortunately the posts are greeted with skeptism, understandable so. If you are interested in learning more about what is happening with your body and how you CAN HEAL it and repair ( not just treat the symptoms) I suggest reading "Living well with fibromyalgia- what your doctors don't tell you" by Mary Sholom. You can also visit her web site http://thyroid.about.com/. The brain fog has gone away, my pain is gone 90%, I sleep well and now have alot of energy=naturally as I have gone several days w/o supplements -only taking my adrenal and thyroid hormones. Since everyone is different - everyone's treatment is different. By the way, my blood test for my thyroid showed up fine despite the fact that I am (was) full blown fibromyalgia AND hypothyroidism. Blood testing for this is very inaccurate thus the reason so many people are sick with this and the doctors are mystified. Not the doctors at Fibro and Fatique, they treat the person.

 

JJ1 - November 16

Clearing confusion. ... A few days ago, the second posting on this discussion was from Larry, so that is what Amyloo and I responded to. Larry's post is now gone (I can only guess that it was deleted for whatever reason by the moderator)

 

barbar - November 16

How about "fibrofoggers"? And Larry, you very long post sounds interesting. I am going to a Lyme disease specialist to make sure I can rule that out and then I think I will check out your suggestions.

 

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