Please Don't Feel Guilty

[Rosetta2014]

I've had this dreaded syndrome every since Dec. 13th 1997 9:45pm a date I will never forget that when I died and this shell of me was born, Fibro is genetic this gene was going to be activated no matter what, we have a right to feel every emotion but guilt we are victims in my case. We are not guilty we have been taken hostage by this god awful syndrome My new Doctor does Fibro research his main goal is to stop the pain so that our mines and bodies can began to heal, just think no more fibro fog, no more abnormal thyroid, we get to keep our gallbladder most of us develop IBS and lose our gallbladder. Please don't feel guilty you did nothing to case this genetics did.

[Hidden]

That's something to think about, it would be great if that

Was confirmed that it is generic, I also believe that it is

My Mum had similar pains as I do but doctors said it was

Normal to feel pains as we get older. A lot of research is

Being done at present so there is hope.

I find that mainly people think that it is a mental health

Problem and it's all in our heads what rubbish, at time when people don't believe me I think I'm going mental maybe

That is what they mean.

Hugs viv

[Rosetta2014 in reply to Hidden]

Actually it is in our heads, the we have a chemical imbalance that causes our brain not to no when to turn off the pain signal we also have hormonal imbalances in our thyroid so it's in our head but we do not have a mental health problem. But we do have fibro fog which I think comes from not being able to get a normal night sleep, plus we have Chronic Fatigue Syndrome. We are not mentally patients we are mentally exhausted, from people and doctor who think we are.

[Betty67 in reply to Rosetta2014]

very well put.

[naturagirl in reply to Rosetta2014]

So very well put, Rosetta!

[TheAuthor]

Hi Rosetta2014

I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry that you have suffered in the way that you have, and my heart and my thoughts go out to you, and I genuinely hope that you can find some resolution and relief to your Fibro problem.

I have actually read quite a few write ups from arthritis UK to the webMD about the genetic links of Fibro. I have pasted you a link (albeit quite old) from 2 years ago whereby Kings did a genetic survey on this; a link about this was posted on the forum:

healthunlocked.com/fibroact...

I want to wish you all the best of luck with your Fibro and your journey.

All my hopes and dreams for you

Ken x

[Rosetta2014 in reply to TheAuthor]

Thanks Ken the study has been closed but I am interested in anything that can help us. The page on what causes fibro answers the genetic question why if its genetic it does follow a set pattern could you post that page I think it gives clarity to understanding the causes of fibro.

[TheAuthor in reply to Rosetta2014]

Hi Rosetta2014

I am really sorry but I cannot find a full result for these tests only bits and pieces about them. That is a real shame as I would have enjoyed reading them myself?

I have pasted you another couple of the links that look at the issue.

fibroaction.org/Pages/What-...

fibroaction.org/News/The-Ki...

All my hopes and dreams for you

Ken x

[teddybear7]

There is no other person in my family with it so I don't think that it is genetic in my case. I think mine was triggered via trauma incident. One thing is certain we are not all the same. My gall bladder is good and I don't have IBS or thyroid problems. If we could all be labeled under one heading then I think finding solutions would be easier. X

[Rosetta2014 in reply to teddybear7]

I agree with you a lot of us have the same problem and some of us don't the amount of time you have it also plays a part. Please check this site ( fibroaction.org/Pages/What-... it may help.

[teddybear7]

There is no other person in my family with it so I don't think that it is genetic in my case. I think mine was triggered via trauma incident. One thing is certain we are not all the same. My gall bladder is good and I don't have IBS or thyroid problems. If we could all be labeled under one heading then I think finding solutions would be easier. X

[caninecrazy]

I also believe that it is genetic as ive fibro and lupus (main 2 things) and my twin had lupus, my younger sis has lupus and her twin ,my bruv (mum had 2 sets) has ME and they are all autoimmune conditions and are "related" x

[hamble99b]

I have had fibro for over 36 years but do not have IBS nor has my gall bladder been ŕemoved. Yes I've got under-active thyroid, but it is not genetic, neither is my fibro.

There are many theories as to the causes of fibro, and this is just my own personal experience. I wish you well with your search for what will help you.

regards,

hamble.

[fenbadger]

I think MS is related, too.

Just because something is in your head doesn't necessarily mean its not real

[Mdaisy]

Hello All,

You've mentioned the discussion about Fibro being genetic;

Research has shown that there may be genetic factors involved in Fibro that could lead to a genetic susceptibility to the condition. If you have a close family member with the condition, you are more likely to develop Fibro, but you will not definitely do so (Lindsey Middlemiss Founder & Chair 2009)

fibroaction.org/Pages/What-...

It is reported it may have a genetic predisposition, this means the risk of developing Fibro is passed on but you need a trigger. What trigger and why it triggers Fibro in one member of the family not another is unsure. For instance, both members may have the same trigger but one may develop Fibro & the other not!

I gave a sample to Kings Genetic Study in the hope we can learn more & I look forward to the more recent studies like the Kings College results which will take a few years to be published.

Discussion about IBS & Thyroid, Fibro has been reported to have

raised levels of the chemical substance P, which helps transmit pain signals, contributes to you feeling pain when you shouldn't and feeling more pain than you should from painful stimuli. Low levels of available dopamine contribute to or cause many of the symptoms of Fibro, affecting movement, cognitive function, mood, sleep and pain. Dysregulation of the HPA (hypothalamic-pituitary-adrenal) axis affects your reactions to stress, as well as disrupting digestion, mood, and energy usage. Reduced availability of opioid receptors in the brain means that opioid medications are less effective. These are just some examples of what is happening with Fibro (Lindsey Middlemiss 2009 FibroAction Founder & Chair)

fibroaction.org/Articles/Be...

In my personal opinion, from the above passage Fibro affects the HPA causing problems with digestion etc , therefore due to this people with Fibro may be susceptible to conditions but people can have IBS & Thyroid which can occur without Fibro. This said, I believe IBS is common in those with Fibro.

I hope this helps

Best Wishes

Emma

FibroAction Administrator

[teddybear7]

This is yet another post that is making me question my diagnosis. I don't conform to anything I m reading on here. I don't seem to be following everyone else's patern. ....puzzled.com....

[honey25]

Iwas diagnosed in 2007 and my sister was diagnosed 2 years ago but we also both had traumatic events in our lives so thats kind of a vote for both hmmm who knows hugs to everyone xxx

[Rosetta2014]

Gentle hugs to you and your sis

[mitziblue]

Sweetheart....Well said. It's terrible not knowing from one day to the next how you'll feel. It's just something you have to live with and remember there are others worse off than we are. Thanks, xxxx Mitzi