Fibro cause?

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Fizzbw

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Fibro cause?

  • on: 23 Jun 2013 10:14PM
http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/

What do the Fibro sufferers think of this?

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auntieCtheM

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Re: Fibro cause?

  • on: 23 Jun 2013 11:02PM
That is interesting.  But having a theory is not having a cure.  How many years before they test the theory and then come up with something we could try.  Decades I expect. 

I am not jumping for joy, and I would not even if I could jump!!

Mabelcat

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Re: Fibro cause?

  • on: 23 Jun 2013 11:22PM
It's interesting but I would want to see further research published and peer reviewed before accepting this theory as the ultimate explanation.  Fibromyalgia is a syndrome with multiple symptoms and probably multiple causes, I very much doubt there is just one explanation for it.

Sunny Clouds

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Re: Fibro cause?

  • on: 24 Jun 2013 01:34AM
Once you have a key finding like this, you can develop tests.  Then if you show a positive result for this blood vessel nerve abnormality, they can put you in this group, as it were.

My gut feeling is that people currently classified or self-classified with fibro fall into at least two categories - those that have it, those that have something else that appears to be it and maybe those that have another condition that can be separately identified, which one could think of as 'other sort of fibro', giving more than one diagnosable condition.

Once you've found one major cause, you can then look at who's left and whether you've got a significant number of them with a shared cause, or whether there are just a few left, with disparate causes, who should be re-diagnosed.

I tend to think that when you have a condition for which there is no test, you'll always get some fuzzy diagnoses around the edges, especially when it's a condition with symptoms that overlap other conditions.

(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fizzbw

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Re: Fibro cause?

  • on: 24 Jun 2013 09:33AM
If nothing else, will it be a challenge to the "Fibro is all in your mind" attitude?

I thinkit has to be seen as a forward move. I wish that someone should find out the reason for TN that explains why pain continues after the blood vessel has been moved, if that is indeed the cause, but there's no funding for research. Yet.

There is the complication of Lymes disease as well. I know this is a problem in the US, is it an issue here in the UK as well?

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starsmurf

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Re: Fibro cause?

  • on: 24 Jun 2013 12:32PM
I suspect that that fibro is actually several very similar conditions, just as diabetes has two forms.  Each of those types of fibro will have different causes and therefore require different treatments.  Many conditions have different forms and causes, which require different treatments.  It doesn't make fibro any less of a real - and devestating - condition.

At least this is the start of discoveries that could lead to treatments.  It will be several years until they come out, unless there are already licenced drugs that would be effective.  Hopefully. this discovery will make doctors take fibro seriously and persuade them that it is not a psychological condition.

My dad had a snappy comeback to doctors who thought that ME was a psychological condition (one of my sisters and my brother have it).  When a doctor would say something like, "well this patient shows clear signs of depression," my dad would reply, "so do many patients with cancer/paralysis/MS etc.  Does that mean that disease is all in their mind?"

Something to keep in mind when you see a sceptical doctor.
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auntieCtheM

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Re: Fibro cause?

  • on: 24 Jun 2013 08:08PM
Long ago I had a discussion with my then GP along these lines.  He said that I was depressed therefore I got all these other symptoms.  I said that because I had all these symptoms I was depressed.

We agreed to differ.

Mabelcat

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Re: Fibro cause?

  • on: 24 Jun 2013 08:26PM
For me it is the other way round.  I've had recurrent episodes of depression for a lot longer than I've had fibromyalgia and cfs.  For me I think it is the unremitting effort I have to make to function with my mental health issues which has worn me out and at least contributed to the fibro/cfs.

Equally, I'm sure that the recurrent injuries I have sustained over the years which have helped to produce the chronic pain.  It's all fascinating but I have to say that regardless of the causes a cure would be awfully nice!

auntieCtheM

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Re: Fibro cause?

  • on: 24 Jun 2013 08:39PM
Oh much more than 'awfully nice' !

I just wish that the pains would go away, just for a little bit.  It is like being in battle 24 hours a day.

sherbs

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Re: Fibro cause?

  • on: 24 Jun 2013 09:36PM
Just a quick question on fibro

I have a colleague at work who has suffered from a "bad back" I know, I hate that saying as well, she says she has a "bad back" so its ok for me to repeat her.

The pain clinic cant quite pin down what is causing the pain in her back, they have given her several facet joint injections and microwaved a nerve, that they thought might be the cause, which neither has helped her pain.

They now say she may have fibro, as she was able to touch a point in her lower back that hurts, surely that cannot be right, as I too can touch several points in my lower back that hurt.

She is now in a tizzy, as the dreaded word fibro has been mentioned, so how do the Doctors diagnose fibro as she has had no other tests ??

auntieCtheM

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Re: Fibro cause?

  • on: 24 Jun 2013 10:32PM
Well - one or two pains in the back is natural.  Humans were made to be on all fours, so standing on just two legs puts quite a strain on the back.  Hence the very widespread 'back pain'.

Fibro has masses of indications, but no tests.  They test you for everything it could be and when they come back as normal the diagnosis is fibro.

I have three types of body pain - lines of pain along each limb, sort-of along the bone.  Then there are pains in the muscles and joints when I move, or when I do not move.  Then there are specific points which if poked make me scream as though a sharp finger-nail has been jabbed into the skin.  And I have other point pains that are there 24 hours a day, day in day out that sometimes wax and wane, it is very odd.  Also there are the 'pins and needles' pains that I mostly get in my arms and legs.  Is that more than three types of pains?  Oh well.  anyone with fibro will know what I mean.

Painkillers keep the pains in check but they never go away.  The pain is unremitting.  Then there is a range of things like not being able to sit still, restless legs, interrupted sleep, burble burble.

That is fibromyalgia.

Without going into the other things like depression, headaches, IBS and so on that are generally associated with it.

Does your workmate have this wide range of symptoms that totally interrupts their life?
« Last Edit: 24 Jun 2013 10:35PM by auntieCtheM »

Mabelcat

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Re: Fibro cause?

  • on: 24 Jun 2013 11:45PM
I was in your friend's situation a few years ago.  I had recurrent episodes of low back and hip pain probably linked to care work and various injuries.  Between whiles I was relatively ok and responded well to physio and analgesia actually worked.  Over time the episodes became more frequent and the pain lingered between flare ups and I was diagnosed with 'chronic pain syndrome'.  Pain apart I was generally healthy and since everything hurt I took the view that I might as well do everything and carried on running, cycling and using the gym.  I had had scans which revealed no obvious damage so just carried on except when my sciatica flared up when I just swore a lot.

The pain did gradually get worse and I couldn't always push past it to do things but I educated myself about pain and pain management and found that really helped.   The changes which indicated that something else was going on as well as 'just' the pain came quite suddenly.  I had a very stressful few months: my father died, I moved house and had a relationship end.  On top of this I had a really bad bout of flu and of course my depression came and went as before.  The effects of the flu really lingered and my sleeping pattern changed and I found that though I did sleep I would wake several times in the night and I started to experience really disabling fatigue and the pain got worse and worse.  I discovered that it is actually possible to be too tired to eat, even if someone puts a meal in front of you.

I had an MRI following a protracted episode of sciatica but it was clear and following referral to the local fibro/cfs service was diagnosed about five years ago.  From being localised to my back and hips the pain has become widespread throughout my body and I have had to learn that my previous practice of carrying on regardless just doesn't work any more.  Even relatively mild exertion can produce a dramatic flare up of symptoms as can psychological stress or significant life events.

Obviously I can't say if your friend has fibro, it is a possible diagnosis but she would need other tests even just to exclude other possibilities.  I was tested for rheumatoid arthritis, anaemia, coeliac disease, infection and other things I forget - ooh and thyroid imbalance.  I would strongly recommend she asks for a referral to a pain clinic where she can get specialist advice on managing pain.  just remembered I also developed a sudden and complete intolerance of alcohol which is quite common and very annoying.

Hope this helps.  Even if it is fibro a proportion of people do make a complete recovery or have flare ups but are fine in between whiles.

devine63

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Re: Fibro cause?

  • on: 25 Jun 2013 12:12AM
"I thinkit has to be seen as a forward move. I wish that someone should find out the reason for TN that explains why pain continues after the blood vessel has been moved, if that is indeed the cause, but there's no funding for research. Yet."

Remember it is the nerves which pass on pain messages, not the blood vessels.  If the nerve have been sensitised to pain they may continue to react to various stimuli by reporting "pain" even though the original source of the pain has gone (phantom limb experiences are similar).

"There is the complication of Lymes disease as well. I know this is a problem in the US, is it an issue here in the UK as well?"

Lymes disease is present in the UK I believe, but not quite to the same extent as in the USA.

Mabelcat

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Re: Fibro cause?

  • on: 25 Jun 2013 12:51AM
I developed a chronic pain syndrome after having my appendix removed even though the surgery was a complete success.  For some reason my nervous system just refused to switch off just as it is refusing now with the fibro.

Fizzbw

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Re: Fibro cause?

  • on: 25 Jun 2013 11:50AM
Devine, yes I know, that's effectively what has happened to me, and many others. But a lot of people have the blood vessel removed for pressig on the nerve and their pain is immediately gone and often stays gone. I want to know what the additional factor or mechanism which means some people's nerves are more damaged than others. I had my first MVD to move the blood vessels within 4 months of developing TN, yet my nerve is so damaged its never had a remission, again, like many others even though TN is known to go into remission! It seems to me, though it could be the natural selection of the Internet, that there are greater numbers of young people getting this very stubborn and protracted from of TN. But as it still thought of as an old people's disease it's just not researched.

Fibro's a b@*%h. I know someone who though he had Fibro but actually had thyroid issues, the tests a not good enough and always showed him as clear. The normal range is too wide and inaccurate. There are so many things that cause us pain and syndromes etc its a complete head f***.

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