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Author Topic: What is fibromyalgia?  (Read 6338 times)

Offline Bobby1

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What is fibromyalgia?
« on: 30/01/2012 03:54:55 »
Hi I am new
wondered if you could give me some information on what is happerning to my body with fibromyalgia.
thank you
Bobby1
« Last Edit: 31/01/2012 21:19:56 by chris »


 

Offline Donnah

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Re: Fibromalgia
« Reply #1 on: 30/01/2012 05:29:59 »
Hi Bobby1,

I was diagnosed with FM many years ago and suffered greatly.  I now live a good quality of life and manage my symptoms.  Some of the basic stepping stones I used are:
* identifying allergies and sensitivities (food, cleaning materials...)
* eating high quality, organic food (I grow most of mine)
* finding what "bugs" you in life and avoiding it (even if it's a family member)
* get quality sleep (unplug the phone, tape a "do not disturb" sign to the door...)
*  fresh air and exercise every day, even if it's only a short walk
and if you can afford these:
* regular massage therapy (this works wonders for me)
* having a dental compatibility test done and the necessary dental work with appropriate materials
* chiropractic care to keep your frame straight

There's also lots of information here:  (read it on a clear headed day)
http://en.wikipedia.org/wiki/Fibromyalgia

FM doesn't seem to actually deteriorate anything, it just makes you miserable with sometimes severe, and constantly changing symptoms.  You're on the right track looking for information, because it can be controlled and you can get back to a high quality of life.

How long have you known that you have FM, and what has your approach been so far?  Do you have people who are supportive of you, or are you on your own?
« Last Edit: 30/01/2012 05:34:04 by Donnah »
 

Offline RD

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Re: Fibromalgia
« Reply #2 on: 30/01/2012 10:21:24 »
“fibromyalgia” is a diagnosis of exclusion , so can be used as a "waste basket diagnosis".

If I received a diagnosis of fibromyalgia I would seek an independent second opinion from a specialist, (e.g. a rheumatologist).


* chiropractic care to keep your frame straight

before anyone employs a chiropractor they should read this ... http://www.thenakedscientists.com/forum/index.php?topic=28416.msg297308#msg297308
« Last Edit: 30/01/2012 10:52:40 by RD »
 

Offline Bobby1

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Re: Fibromalgia
« Reply #3 on: 30/01/2012 14:41:05 »
Thank you Donnah
I have had fibromyalgia for 30 years and struggled to get a diagnosis wass finally diagnose in 2010
have done pain management programe with great results but its the fog and tiredness some days
wake up as if I have had no sleep at all.
I am doing a lot of stretches breathing excersises but some times no avail.
I also care for both parents which is very hard with pain and tiredness/Fog
also belong to fibro social group but doesn't seem to be real answers to this difficult complaint
but trying hard to make my own answers.
fog has sarted having difficulty spelling which makes me feel silly
On a lighter note getting past winter and lighter days and nights
thanks Donnah
Bobby 1

 

Offline Donnah

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Re: Fibromalgia
« Reply #4 on: 30/01/2012 21:03:41 »
RD,
You do bring up a good point.  Every field of endeavour has its quacks.  I judge by results.  Not every chiro has been helpful to me, but many have.  I insist on using an activator (spring loaded thingy) on my cervical (neck) vertebrae, and have developed my body awareness to the point that I can tell when alignment is right.  Developing body awareness is our responsibility (we shouldn't just expect someone else to make us well) and is an extremely valuable tool in keeping physical quality of life. 
   
 

Offline RD

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Re: Fibromalgia
« Reply #5 on: 30/01/2012 21:13:27 »
I have had fibromyalgia for 30 years and struggled to get a diagnosis wass finally diagnose in 2010
have done pain management programe with great results but its the fog and tiredness some days
wake up as if I have had no sleep at all.
I am doing a lot of stretches breathing excersises but some times no avail.
I also care for both parents which is very hard with pain and tiredness/Fog
also belong to fibro social group but doesn't seem to be real answers to this difficult complaint
but trying hard to make my own answers.
fog has sarted having difficulty spelling which makes me feel silly

Presumably you've been tested for hypothyroidism.

On a lighter note getting past winter and lighter days and nights

If symptoms are seasonal possibly seasonal affective disorder (SAD)
« Last Edit: 30/01/2012 21:20:49 by RD »
 

Offline Donnah

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Re: Fibromalgia
« Reply #6 on: 30/01/2012 22:21:35 »
Bobby1,
You are working toward your own wellness, which I find impressive.  I found one of the hardest parts was the sense of aloneness and despair.  Many people only want to be around if you are full of sunshine and energy, which doesn't often happen with FM.  But there are a few people who will stick by you and they are real treasures in your life.  It is a very humbling experience, as you said, you feel silly because you forget how to spell.  The upside is that humility is a great (and rare) quality.

I took part in a psychologist's thesis study called "Superwoman is Sick:  The Life Experience of Women With Fibromyalgia".  Terri (the psychologist) brought a lot of information to light for me.  She developed a profile for FM women and some of the factors included:
*a stressful childhood
*carrying a heavy workload
*low decision latitude
*bullied by family or coworkers (social isolation or exclusion, efforts being devalued,      feeling threatened, worn down, frustrated)
*working until you drop instead of working until you're tired (Superwoman)
and a whole pile of physical chemistry resulting from what amounts to a "fight or flight" fear response that has been turned on so much in your life that the throttle becomes stuck open.

I figure that since our brains are control central, reprogram your brain and you change your chemistry and your life.

I watched my cat and learned from him how to be fully present in moments of pleasure.  Moments of pleasure sounds like all you have time for right now.  But it's a good start.  For example, if you see a sunbeam touching your couch, go sit in it and fell the pleasure of its warmth and energy on your face for a few moments.  Or take a moment to listen to birds or smell a flower.  Even the busiest of people can squeeze those moments in; it's more about reconditioning yourself to experience pleasure.

You can email me through the forum if you just want someone to listen.  If I can help you improve your health it adds value to my experience.


 
 

Offline Bobby1

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Re: Fibromalgia
« Reply #7 on: 31/01/2012 01:03:38 »
Hi Donnah
What you say is so a breath of fresh air to me as I try to stay positive keep going to put things back
into some sort of order have done it before but because I care for both parents it is very difficult to
get them to understand what has happened to me and I get bullied into doing things their way which
doesn't work because this illness is so complex that it needs so much of my time to progress

Muscle strenghing
brain correction (spelling comunication)
Chronic tiredness (sleep when bad work on when better to strengthen grey mater)
Breathing excercises
Relaxation
Pacing
Stretches
then fit normal day to day tasks in as well difficult with the tiredness
cooking shopping caring cleaning

have done a lot of this before but since caring I have to go to the bottom of the list
so have returned to  former self  weeker and fibrofog has returned with vengence
you have helped a lot
Thankyou Donnah
Take care
Bobby1
 

Offline Bobby1

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Re: Fibromalgia
« Reply #8 on: 31/01/2012 01:18:56 »
Hi Rd
I have been to lots of doctors yes I have Hashimotos thyiroiditos
7 buldging discs
seen chiropractor /ostiopaths/ Massage.
nerve blocks epiedurals didnt work made pain worse because of fibro
Chronic tiredness
foggy brain
generally very tender muscles all over from head down to feet

have done a workshop with Scientists and other chronic pain sufferer's

Find the words waste basket case for fibro very annoying and just not right
lots of People suffer from Fibromyalgia as much as 1in 10 cause not Known its something to do with pain nerve wiring going wrong
thank you for your comments
sorry for spelling
Bobby1

 

Offline Donnah

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Re: Fibromalgia
« Reply #9 on: 31/01/2012 02:44:41 »
Hi Bobby1,
Is there anyone you can get to help care for your parents?  Siblings, or maybe you are eligible for help from an outside caregiver. 

I understand the desire for your parents to "get it".  It's frustrating when those closest fail to validate your feelings and experiences.  But it is their inability/failure, not yours.  As hard as it may be to do, I recommend letting that one go.  If they don't understand by now, they're not going to.  There are other people that do understand, and those would be the ones you want to talk to about your health issues.

Donnah
 

Offline Bobby1

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Re: Fibromalgia
« Reply #10 on: 31/01/2012 03:47:05 »
No thats half the problem there is no one else to care for my parents have no siblings or aunt'ts I feel that it is my
responsiblity, cant get much help from social services as dad pays for his care so has wash and dress and everning
care to get ready for bed but comes down again till gone 11.
thanks Donnah
Bobby 1
 

Offline RD

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Re: What is fibromyalgia?
« Reply #11 on: 31/01/2012 21:45:51 »
I have been to lots of doctors yes I have Hashimotos thyiroiditos

Hashimoto's thyroiditis alone seems sufficient to explain your symptoms and is treatable with thyroid replacement hormone ...
Quote
Hashimoto's thyroiditis is often misdiagnosed as depression, cyclothymia, PMS, chronic fatigue syndrome, fibromyalgia
https://en.wikipedia.org/wiki/Hashimoto%27s_thyroiditis#Diagnosis

Find the words waste basket case for fibro very annoying and just not right

waste basket diagnosis” does not deny the reality of your symptoms, it questions the accuracy of the diagnosis: a condition labelled “fibromyalgia” could in reality be a treatable illness (like hypothyroidism). The symptoms being real do not prove the condition is fibromyalgia: there is no test for fibromyalgia, (there are tests for hypothyroidism).
« Last Edit: 31/01/2012 22:01:42 by RD »
 

Offline Bobby1

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Re: What is fibromyalgia?
« Reply #12 on: 01/02/2012 12:22:53 »
Hi Rd
their ia test for fibromyalgia mine was done by a top pain doctor at Guys& St thomas hospital london
trigger points test found pain in 3 quadrants posibly 4 by putting pressure on all four quadrants of the body.
very painfull in places thats how doctors makea diagnosis of fibromyalgia.
cheers
Bobby
 

Offline RD

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Re: What is fibromyalgia?
« Reply #13 on: 02/02/2012 13:31:10 »
their ia test for fibromyalgia mine was done by a top pain doctor at Guys& St thomas hospital london
trigger points test found pain in 3 quadrants posibly 4 by putting pressure on all four quadrants of the body.
very painfull in places thats how doctors makea diagnosis of fibromyalgia.

You may have been wrongly diagnosed as having fibromyalgia before your hypothyroidism (Hashimoto's thyroiditis) was discovered …

Quote
Hashimoto's thyroiditis is often misdiagnosed as … fibromyalgia
https://en.wikipedia.org/wiki/Hashimoto%27s_thyroiditis#Diagnosis

I do not deny you have pain: but your pain does not prove a diagnosis of fibromyalgia, there is no test for fibromyalgia, it is a diagnosis of exclusion.

If any doctor claims you simultaneously have both hypothyroidism and fibromyalgia ask them to Google the phrase Occam's razor .
« Last Edit: 02/02/2012 19:01:56 by RD »
 

Offline Donnah

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Re: What is fibromyalgia?
« Reply #14 on: 02/02/2012 19:53:27 »
RD you strike me as a smart person with a desire to help others.  I've been down Bobby1's road so I have experience that may be useful.  That puts us in the enviable position of being able to help find answers.   
 
There is a long list of symptoms of FM that could be attributed to many things.  In that regard it can be seen as a diagnosis of exclusion.  However, I don't believe there is any other ailment that results in the telltale painful trigger points of a person with fibromyalgia. 

FM people have limited energy resources and any effort beyond the necessary food, clothing, housing needs takes a huge toll (hard for people blessed with good health to understand).  Bobby1 has clearly been active in recovery, and sought medical help, deciding to go with the diagnosis of a top pain doctor.  I admire Bobby1 for the superhuman effort that I know it takes to pursue answers.

 

Offline RD

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Re: What is fibromyalgia?
« Reply #15 on: 02/02/2012 20:22:30 »
I don't believe there is any other ailment that results in the telltale painful trigger points of a person with fibromyalgia.

others disagree ...

Quote
When hypothyroidism decreases energy metabolism, trigger points often form in many muscles and refer pain.
http://www.drlowe.com/QandA/myofascial/generalquestions.htm

Quote
hypothyroidism is one of the major risk factor of formation of trigger points it can generate trigger points any where in the body
http://www.cmra.in/html/treatment/triggerpoint.html

et al
 

Offline Donnah

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Re: What is fibromyalgia?
« Reply #16 on: 02/02/2012 21:39:38 »
Hi RD,

http://outsmartdisease.com/pain-low-thyroid-fibromyalgia-and-trigger-points/
I found this in the et al link you supplied.  I have always heard FM related points referred to as trigger points, but this info indicates that they are actually called tender points.  I am interested to learn that trigger points are associated with other conditions, but it seems that there are 18 tender points specifically related to fibromyalgia.  Do you know if these 18 specific points may also be related to other conditions, or do they remain specific to FM?

Once when a Dr. pushed a tender point on the back of my leg, it felt like she stabbed me with a pointy knife.  Within an hour my foot was so swollen I could not get my shoe on.  And later, when the rheumatologist pushed all the tender points for testing, I had so much body pain I could hardly move for about three days.  After that I refused to let anyone push more than a few points at a time.

 

Offline RD

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Re: What is fibromyalgia?
« Reply #17 on: 02/02/2012 22:38:09 »
... seems that there are 18 tender points specifically related to fibromyalgia.  Do you know if these 18 specific points may also be related to other conditions, or do they remain specific to FM?

Sorry I don't know about these tender points, but fibromyagia is listed as a diagnosis of exclusion so there cannot be symptoms specific to it, otherwise it would be diagnosable by those specific symptoms.
 

Offline JP

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Re: What is fibromyalgia?
« Reply #18 on: 03/02/2012 02:49:47 »
Not that the Wiki's ever been wrong, but the NIH certainly lists the tender points as a criteria for diagnosis...

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/
 

Offline Bobby1

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Re: What is fibromyalgia?
« Reply #19 on: 07/02/2012 03:14:02 »
Hi Rd I am on thyroxine for thyroid 150mcg and blood tests say that thyroid is Ok
I can see your disagreement in fibromyalgia but UK & USA Health both Agree 
Fibromyalgia Syndrome a Chronic Pain Illness
 

Offline Bobby1

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Re: What is fibromyalgia?
« Reply #20 on: 29/02/2012 23:07:03 »
My Pain is here and now and still cant understand what is causing it
any ideas, pain in legs arms back neck head & bad chronic fatigue.
confusion
 

Offline RD

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Re: What is fibromyalgia?
« Reply #21 on: 29/02/2012 23:46:55 »
My Pain is here and now and still cant understand what is causing it
any ideas, pain in legs arms back neck head & bad chronic fatigue.
confusion

If your hypothyroidism is properly controlled, (measurable via blood tests for hormone levels), maybe screening for rheumatic disease like lupus is warranted (more blood tests).

Lupus symptoms can include cognitive dysfunction (“brain fog”), endocrine insufficiency/failure, (e.g. hypothyroidism, diabetes), arthralgia (joint pain), myalgia (muscle pain), and extreme fatigue. 

Lupus can be made worse by exposure to sunlight: photo-distributed rash is common, (sun exposure can make all aspects of the syndrome worse, not just skin). Although the photo-distributed rash is not essential for a lupus diagnosis.

If you ever have rashes or any skin manifestations take a photo to show your doctor as they could be diagnostically relevant.

NB: there are several lupus-like syndromes : they come under the category of "connective tissue disease" and are treated by a specialist rheumatologist.

Quote
 In fact, there are no blood tests or x-rays which reliably diagnose fibromyalgia ... As many of the symptoms of fibromyalgia are similar to those experienced by lupus patients, there is a natural concern that the symptoms of a fibromyalgia flare could be the underlying lupus picking up steam. Ultimately, the treating physician has to make a call on these increased symptoms. In general, lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia -- thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically.
http://www.myalgia.com/lupus.htm
« Last Edit: 01/03/2012 00:20:08 by RD »
 

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Re: What is fibromyalgia?
« Reply #21 on: 29/02/2012 23:46:55 »

 

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