How do you describe Fibro?

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

How do you describe Fibro?

Postby Picklepudding » Tue Apr 30, 2013 6:17 pm

I only saw the rheumatologist yesterday so mine is only a preliminary diagnosis, but my husband/mum/friend have asked what it is and I've had to answer 'I don't really know!' My rheumatologist referred to it as a sleep disorder caused by not entering phase 4 deep sleep so the body not being able to recover itself...or something like that. I took that explanation as it would explain why I feel more tired when I get up than when I go to bed! So, how do you describe Fibro to people who don't know what it feels like? A chronic pain syndrome, a sleep disorder, a combination of both?! Most illnesses can be explained in laymans terms but I don't even know where to start!
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
Picklepudding
UKFM Member
 
Posts: 122
Joined: Tue Apr 30, 2013 6:35 am

Re: How do you describe Fibro?

Postby denys » Tue Apr 30, 2013 6:41 pm

the sleep part is a symptom of fibro I dont think its the cause. I've been told its the brain sending inappropriate signals to nerve endings telling the body its feeling pain when in someone without fibro would not be feeling it. The fact we cant get enough stage 4 sleep means we dont get any restorative sleep giving the extreme fatigue etc. If I need to give information to others I use the NHS website and also the booklet I was given by the rhuematologist. Hope you manage to to find the answer :-) :-) :-) :-) :-)
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: How do you describe Fibro?

Postby sparkles87 » Tue Apr 30, 2013 6:48 pm

Fibromyalgia (FM or FMS) is characterised by chronic widespread pain and allodynia (a heightened and painful response to pressure)

Its exact cause is unknown but is believed to involve psychological, genetic, neurobiological and environmental factors.

fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness

Some patients also report difficulty with swallowing,bowel and bladder abnormalities,numbness and tingling,and cognitive dysfunction.

Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.

I personally describe it as having the flu all the time you ache all over are exhausted .

My rheumy said to me it was like having a faulty fire alarm in your brain if the toaster sets of the smoke alarm there's no fire but its a warning message so when we get alerted to pain no damage is being done its a false alarm.

Hope this clears things up a little and I haven't confused you more lol
*~*~*~*~*~*~wishing you all a pain free day*~*~*~*~*~*~

lots of gentle hug spakles
sparkles87
UKFM Newbie
 
Posts: 8
Joined: Mon Apr 22, 2013 3:45 pm

Re: How do you describe Fibro?

Postby teresa67 » Tue Apr 30, 2013 7:23 pm

wwhen i was diagnosed with fibromyalgia i was told it is like rheumatoid arthritis but it is in the muscles and wwas told it effects sleep aswell, i have suffered with Rheumatoid and osteo arthritis for over 17years and diagnosed with fms 5/6years ago i take gabbapentin and zomorph, i also have other health issues diabetes type 2, i had a totalleft hip replacement 2years ago which has still left me with lots of pain and a burstitis because of it :(
teresa67
UKFM Member
 
Posts: 17
Joined: Wed Aug 01, 2012 11:07 am
Location: hull. east yorkshire

Re: How do you describe Fibro?

Postby Picklepudding » Tue Apr 30, 2013 7:39 pm

Thanks all of you, your replies are all very helpful and make perfect sense!

Paula x
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
Picklepudding
UKFM Member
 
Posts: 122
Joined: Tue Apr 30, 2013 6:35 am

Re: How do you describe Fibro?

Postby SuperCat007 » Tue Apr 30, 2013 7:56 pm

I normally say it is like CFS or M.E (people have heard of these more often), but it affects my joints more meaning that my joints swell and can be very painful. A bit like having the flu, or a bad hangover all the time.
SuperCat007
UKFM Member
 
Posts: 77
Joined: Mon Dec 31, 2012 5:09 pm

Re: How do you describe Fibro?

Postby joboulton74 » Tue Apr 30, 2013 8:05 pm

fibro is all the above, most ppl understand the condition M.E. which is very similar difference is me. is caused from virus initially where fibro is normally put down to trauma/accident. Its is hard to explain as its not just widespread pain, its disturbed sleep due lack REM sleep, fibro fog forgetfullness, anxiety depressions, flu like symtoms depends on diff things, weather activity loads, we all have similarities x
joboulton74
UKFM Newbie
 
Posts: 4
Joined: Tue Dec 11, 2012 2:49 pm

Re: How do you describe Fibro?

Postby jennthefunkyranger » Tue Apr 30, 2013 8:54 pm

I generally describe it as being like ME and arthritis, as people know what they are
jennthefunkyranger
UKFM Member
 
Posts: 88
Joined: Sat Nov 17, 2012 11:13 pm
Location: North Staffordshire

Re: How do you describe Fibro?

Postby whoami » Wed May 01, 2013 3:06 am

I describe fibro as it is for me.....A variety of symptoms, I name a few that I have. I say we all have some symptoms the same and some different. The best way is to tell how it is for you.

My hubby's dad had MS. He suffered tremendously with it. When someone asks my hubby to describe fibromyalgia he says it is quite similar to MS, that they share many symptoms that are very disabling but one with a major difference. Fibromyalgia will not take your life, MS does
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
whoami
UKFM Regular
 
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Re: How do you describe Fibro?

Postby LouLou » Wed May 01, 2013 1:25 pm

whoami wrote:My hubby's dad had MS. He suffered tremendously with it. When someone asks my hubby to describe fibromyalgia he says it is quite similar to MS, that they share many symptoms that are very disabling but one with a major difference. Fibromyalgia will not take your life, MS does


I've used that one myself when I haven't had the energy to fully explain things to people. I do think it's a hard illness to describe as it does affect each of us so differently and there are so many symptoms that go with it.

My Gp once said that "FM is not life threatening but life changing" and that's something that's stuck with me ever since.
What doesn't kill you will only make you stronger ;-)
User avatar
LouLou
UKFM Regular
 
Posts: 1009
Joined: Thu Oct 06, 2011 10:40 am

Re: How do you describe Fibro?

Postby painprincess1 » Wed May 01, 2013 8:51 pm

hi pickle , pull up the fibro web sites and let your family have a read or copy some off. that what i did .
i think its better if theres somewhere they can go to read up in there own time then trying to explain something as confusing as this .
smiles and the world smiles with you. cry and you cry alone.
painprincess1
UKFM Member
 
Posts: 867
Joined: Mon Oct 15, 2012 1:38 pm
Location: near london

Re: How do you describe Fibro?

Postby Tel1 » Sat May 11, 2013 11:04 am

Hi There

In reply to how I would describe Fibro..:)) well, it just seems that Fibro is nearly everything that can go wrong with you
body... I think it should be called Multiplemyalgia as that is how it affects us in so many terrible ways... Yes I too also
thought that I had MS... I sometimes still do because a lot of the symptoms are the nearly the same... but I know someone
who had a seizure when they were 27, then they had brain scans and was told it was MS... they haven't had any real symptoms
apart from feeling like WE all do with Fibro.. that person is 49 now.. I asked several doctors and specialists does Fibro cause all
the symptoms we have? or is it our bodies and depressed minds that cause it...nobody can answer it!! I have been told by so many people that... people who are frightened of dying can't live:)) perhaps that is what Fibro is a syndrome of constant worry and
the symptoms to go with it :yikes:
Tel1
UKFM Member
 
Posts: 119
Joined: Thu Feb 21, 2013 2:06 am

Re: How do you describe Fibro?

Postby lala1626 » Thu May 16, 2013 5:02 pm

i had a totalleft hip replacement 2years ago which has still left me with lots of pain and a burstitis because of it

hi huni, my GP thought i had trochanteric bursitis(in my hips) when my pain first started it was only when my pain spread up my back to my shoulders that he decided to have a rethink, 6 mnths later i was dx with fibro in feb 2012, since then it has travelled as far as it can go even my little toes are affected now. xxxx
Be nice and smile to everyone you meet.
You don't know what they are going through.
They may need that smile,
and treasure it.

Don't ask how I am unless you really want to know the answer!
lala1626
UKFM Member
 
Posts: 277
Joined: Fri Mar 23, 2012 5:44 pm
Location: north yorkshire

Re: How do you describe Fibro?

Postby Picklepudding » Thu May 16, 2013 7:22 pm

I was diagnosed with trochanteric bursitis a few years ago...I wonder if that's what it really was...?!?!?!!!!
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
Picklepudding
UKFM Member
 
Posts: 122
Joined: Tue Apr 30, 2013 6:35 am

Re: How do you describe Fibro?

Postby Iceskatemum » Fri May 17, 2013 3:23 am

When asked to descibe fibro I just tell them the truth...its this :swear1: illness that seems to keep just giving more and more symptoms until you don't know which way is up .

If they are still with me I would then go on to tell them of the constant pain & fatigue that just make your body seem to heavy and sore.
Iceskatemum
UKFM Regular
 
Posts: 1599
Joined: Thu Jul 12, 2012 4:20 pm


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 8 guests