Fibromyalgia Action UK


Thirty years of waiting for a miracle. I love these posts because I can put everything together and try to figure out what the hell is going on AND WHY US. I got the why us: Immune system and genetic makeup which is affected by the new environment. To much radiation in the air and other chemicals. If we can figure out the cause, we can work on the cure. Been trying for years and give up for awhile and start again. New things are always available year after year. I have to live here and I choose to present myself to the norms as normal as I can. Makes me feel better and keeps from chasing them away. They don't understand and they can't help so i "act as if" and it makes me feel better. Isolation is always my first choice, but being out there is more useful.

13 Replies


I just wanted to say that your post was very well put and how it sums up a lot of what Fibro is and how it affects us in my opinion.

I especially liked the last couple of sentences.

It resonated well with me and made me feel a bit better about knowing I'm not the only one that isolates themselves because let's face it, it does make life a tad easier.

Even though incredibly lonely a lot of the time :(

I saw a new GP yesterday who knows nothing about Fibro or me, and very obviously thinks if she can get me off all of my meds she will have saved me from myself.

Fingers crossed I don't ever have to see her again !


Hi, thank you I appreciate that. My doctor went to the Institute of Functional Medicine and he is Board Certified. The very best doctor I have ever had. If you can find one, you will be happier.


Since I moved I've struggled so hard to find a new GP that actually knows something about Fibromyalgia and secondly cares rather than seeing me as someone who just wants to be on meds but doesn't need them, when the complete opposite is the truth.

I have totally run out of ideas of trying to explain to a doctor just how much pain I'm in and how much Fibro seriously affects my life



You definitely need to find another doctor. When you do interview him before you decide whether he is a keeper or not. Also look at the reviews before you go see him. If you could find a doctor that is knowledgeable about natural cures.


Very well put! Thank you

Ken x


"Act as if" also helps THEM feel better.


"Out there" I feel isolated. On the board I know I am not alone. There are a few key people who understand, not always the right ones.

My friends live in my computer. :P


Isn't that something, fenbadger, but I love my computer without it or I would loose my mind. I isolated for so many years and then moved to another state and we didn't know anybody. Was at Goodwill one day and met a wonderful, kind young woman who was a Jehovah's Witness, from there my life changed. They take care of me, cook for me and come and study the bible with me. If I'm sick I will get surprised with a house full of flowers. They are the most wonderful and loving people on the earth. I love them. I don't plan on becoming a Witness. I just study the Bible with them and do they know the Bible. They research every question I ask them. They have made us part of their families.


That's brilliant. People who just help without judging or trying to take over are rare.


Couldn't agree more Mr Badger :-) :-)

1 like

I was inspired by a friend who had a lot of difficulties.

3 small children and a hysterectomy - when it involved cutting through the abdominal wall. People did what they wanted to do to make THEM feel good.

Her words: " I had a b**** freezer full of food. What I really needed was someone to take the children to school." Needless to say she had to take the toddler both ways twice a day.

Point taken.


Hi josana, i agree with a lot of whst you say, especially 'stop for a while snd start again', feels very familiar. Act as if, is brilliant, used it in many circumstances over the years, especially when working ! Isolation is the choice/curse of the affliction, I still struggle with this, especicially in winter, enjoyed your post,

Many thanks


In the past 30 years I have known that the norms don't like to be around sick people. I can't blame them. I din't like to be around them (the norms) either because I felt uncomfortable. Like I belong to another species, another race. I moved away from family and friends and moved to the mountains of Colorado. Beautiful, wonderful, but the mountains didn't like me. I got much worse here. Two years I've been here in a very high elevation and I'm on full time oxygen, BP totally out of control, Been to the Emergency Room and Urgent Care 47 times due to extreme blood pressure because of pain. And the constant nausea. Lost over 30 pounds, which is good but suffered like #&^*. Just sold our house and I'm the hell out of here, if I make it two weeks more. But, a miracle happened here. I learned how to be around the norms because here is where I met the JW's and they did not accept my isolation. The JW's are all over the world and I can't believe what they have done for me. I am a changed woman and going back home happy and not ashamed anymore. Love and blessings to you. ( I can't stop the tears). I shouldn't be writing I haven't slept for days.


You may also like...