Fibromyalgia ... who's had experience with this?

[Luanne]

My orthopedic doctor who I've been seeing for my knees has ruled out anything directly dealing with the joints.  He has ruled out rheumatoid arthritis.  Now he thinks I may have fibromyalgia.  He has told me to set up an appointment with my regular doctor.  I'm going to do that tomorrow.  One website said there is a blood test for this and one said there isn't.  Does anyone know the correct answer?  Is there anything else you can tell me about this? 

 

Thanks,

Luanne

[dancingmama]

As far as I'm aware, there is no blood test. Fibro is a rule out diagnosis. That means if there is no other reason, then they stick fibro to it. You don't want that diagnosis unless you are absolutely sure it's nothing else. Rule everything else out first.

[rmtzc2009]

I was diagnosed 1st about 8 years ago and several times since. Not all doctors recognize it as a real medical condition & some won't believe it unless they diagnose it themselves, ruling out all other medical conditions. I've always been told the only test is the 18 point tenderness test. I have asked about blood tests & was told none exist.

 

If your regular MD isnt open to a Fibro diagnoses, I would get another opinion. I require Fibromyalgia medications but also do Myofacial release and find it helps some.

 

I really wish there was something as simple as a blood test. Good luck.

[Orthodox6]

Fibromyalgia is managed by rheumatologist (even though it is not rheumatoid arthritis). I have fibromyalgia. There are good books on the market; I suggest you start reading. Some foolishness in print, but sufficient good information available.

 

Before taking one of the medications prescribed for the condition, read up to know what the side effects can be. I tried Savella until I started to lose my eyesight. I stopped the med, vision improved. I take nothing since then, and am blessed that the flare ups are short and at long intervals of peace.

 

I hope your case is as mild as mine became. The early episodes nearly drove me mad, especially at night.

 

Best wishes. Hold out for a good doctor. Fibromyalgia is very real.

[rmtzc2009]

Yes, read up on medication side effects. I mentioned taking meds for my Fibro but forgot to include that I do experience side effects. I hope your case is more mild.

[IfIOnly]

:grouphug:

 

Do you have the tender points? That's one for sure and classic way to dx fibro. I have them all over my body (many, many more places than the 18 used to dx fibro, for instance, their all along my outer thigh-iliotibial band- in a line and ache and *hurt*) and they feel like tender knots or bruises without the discoloration. 

 

 

 

[Jean in Newcastle]

I've had Fibromyalgia for 25 years plus.  There was  no blood test back when I was diagnosed but I did see mention of one on WebMD.   They will test you for "tender points".  As dancingmama said, it is a rule out diagnosis.  Fibro is technically not a "disease" but is a syndrome - a collection of symptoms.  That doesn't mean that it isn't real, it just means that they do not definitively understand its cause or disease process.  It also means that there is some variety in what helps people diagnosed with fibro and even what symptoms they all have.  Basic symptoms though are pain in specific areas called tender points and fatigue.  The most recent theory for cause at the moment (that I know of anyway) is that it is a central nervous system problem.  I have had the most help from taking medicine geared for the nervous system - specifically one called gabapentin.  (YMMV)  

[Lanny]

I believe there was a thread on WTM (by RoseinBC?) about this, a year or two ago. I contributed with some information about the woman who sings with my favorite singer and a link to her web site or Facebook page. She suffered horribly from this, for 1 or 2 years and she was unable to tour with the group. They just finished a month of concerts in Europe and she was with them.  I hope if you have this that you will find relief.  She is the only person I know who has/had this and it was disabling for her, for 1 or 2 years. GL

[Guest rita4]

There is no test for Fibro. It's one of those rule everything else out kind of diagnosis. I was recently diagnosed by my neurologist with some injury-related muscle atrophy in my Psoas muscle that the Dr were initially considering Fibro after ruling out back injuries, other diseases, etc before they finally discovered the muscle issue. Have you had an MRI?

 

 

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[Anne in CA]

I know three people who were diagnosed with Fibro when they actually had medical conditions that were overlooked that could have been treated and they could have had much more fulfilled lives. My MIL was diagnosed with Fibro when in fact she had a hereditary circulatory disorder that is completely treatable. She spend many years of her life in pain, not doing things she wanted to do because of  bad Fibro diagnoses. A close friend of mine was diagnosed with Firbro instead of the liver cancer she had and died from the liver cancer that could have been treated when she started to have symptoms if she had been correctly diagnosed. Our former worship leader's wife was misdiagnosed with Fibro when her real trouble has turned out to be a brain injury that causes some of her organs to malfunction. All three of these women were treated poorly when they tried to tell their doctors that they felt there was more wrong with them. 

 

So be very, very careful when you see a doctor for this, please.

[monstermama]

Yes, please rule out everything else first.  Your primary care doctor will probably run some tests and then refer you to a rheumatologist - make sure it's one who has a history of treating fibromyalgia, as some have little to no experience.

 

I've also taken gabapentin in the past and it was night and day for me, but I know it doesn't work for everyone.

[Lizzie in Ma]

I know three people who were diagnosed with Fibro when they actually had medical conditions that were overlooked that could have been treated and they could have had much more fulfilled lives. My MIL was diagnosed with Fibro when in fact she had a hereditary circulatory disorder that is completely treatable. She spend many years of her life in pain, not doing things she wanted to do because of  bad Fibro diagnoses. A close friend of mine was diagnosed with Firbro instead of the liver cancer she had and died from the liver cancer that could have been treated when she started to have symptoms if she had been correctly diagnosed. Our former worship leader's wife was misdiagnosed with Fibro when her real trouble has turned out to be a brain injury that causes some of her organs to malfunction. All three of these women were treated poorly when they tried to tell their doctors that they felt there was more wrong with them. 

 

So be very, very careful when you see a doctor for this, please.

 

It is also one of the common misdiagnoses of Lyme Disease, the rheumatologist told my daughter she had it.

Ironically, it is also something one can end up with after chronic Lyme as it can often kick in autoimmune issues.

[The Girls' Mom]

My dh has been diagnosed with fibro, as has a cousin of his.  For him, I think it is simply because they can't pinpoint what is wrong.  For his cousin, the fibro diagnosis fits much better.  The nice thing about his diagnosis is that it allowed the doc to prescribe the one drug we've found that helps his pain at all, and the insurance will cover it.  The bad thing is, it is hard to get HIM or his doctor to pursue more testing.  (honestly though, dh has been through so much with this, he is just tired of the prodding)

[Tiramisu]

I believe fibro does exist. It's sad to even have to say that, but I wanted to preface my comments with that so they are not interpreted as "fibro doesn't exist". These are just the experiences among my family and friends.

 

I was suspected of having fibro. Long story short, I started taking allergy meds daily for increasing seasonal allergies and my pain went away. Now it pops up but only briefly. Whenever I've stopped the allergy med, the pain returns within three days. I've tested it out several times now.

 

My dd was told by her rheumatologist that she could have fibro in addition to a possible autoimmune disease. Even though she still doesn't have an autoimmune diagnosis, her research-oriented rheumie decided to prescribe a benign medication (Plaquenil) used to prevent any flares. Since then her pain and fatigue have improved so I think it was probably a purely autoimmune issue all along. 

 

I have a friend with a fibro dx who had a very serious flare in an autoimmune condition. It took months to figure out what it was, and It could have killed her. She suffered with debilitating pain and was on disability for a long time before that. But when she got sick, she saw great improvement when she was treated with steroids. So even if she has fibro, it's obviously not her only issue. I think she was tested for autoimmune diseases years before and because she wasn't positive at the time, it was considered ruled out. The tricky thing is that sometimes it takes years for tests to become positive and people give up after having one negative test.

 

Two other friends had a fibro dx. Both were discovered to have lupus after many years.

 

Lots of people I read about on an Ehlers-Danlos Syndrome forum received a fibro dx at some point before their underlying condition is figured out.

 

An older friend was dx'd with fibro about twenty years ago and was on all kinds of meds for it. Last year, her rheumie decided to test for the MTHFR mutation. Since then she has changed her diet and supplements and seems to be doing better.

 

I think its important that all causes for fibro symptoms are investigated before giving a fibro dx. Someone could still have fibro, but any other conditions that are part of the picture could improve with the right treatment.

 

Again, I don't want to make light of people who truly have fibro and are suffering with it without help.

[Tiramisu]

I've had Fibromyalgia for 25 years plus.  There was  no blood test back when I was diagnosed but I did see mention of one on WebMD.   They will test you for "tender points".  As dancingmama said, it is a rule out diagnosis.  Fibro is technically not a "disease" but is a syndrome - a collection of symptoms.  That doesn't mean that it isn't real, it just means that they do not definitively understand its cause or disease process.  It also means that there is some variety in what helps people diagnosed with fibro and even what symptoms they all have.  Basic symptoms though are pain in specific areas called tender points and fatigue.  The most recent theory for cause at the moment (that I know of anyway) is that it is a central nervous system problem.  I have had the most help from taking medicine geared for the nervous system - specifically one called gabapentin.  (YMMV)  

 

I haven't seen heard about a blood test, but there are newer studies done on tissue biopsies that show clear differences in small nerve fibers with people who have fibro and those who don't.

[Jean in Newcastle]

I haven't seen heard about a blood test, but there are newer studies done on tissue biopsies that show clear differences in small nerve fibers with people who have fibro and those who don't.

I've seen those studies too but (correct me if I'm wrong) I don't think those kinds of biopsies are offered to general people with a fibro diagnosis who are not part of a specialized study like that.  And I don't know enough about the pros and cons of tissue biopsies to know if they even should be offered.  

[Princess Ariel]

I was one who was "almost" diagnosed with Fibro many  years ago but at that time the rheumotologist didn't think my sleep was disordered enough.  Now I have been diagnosed with chronic Lyme disease which the LLMD (lyme specialist) thinks I have probably had for almost 20 years. Be careful to rule everything else out before settling for that diagnosis.

[Tiramisu]

I've seen those studies too but (correct me if I'm wrong) I don't think those kinds of biopsies are offered to general people with a fibro diagnosis who are not part of a specialized study like that.  And I don't know enough about the pros and cons of tissue biopsies to know if they even should be offered.  

 

You're right. I think they are all research studies.

 

And I wouldn't necessarily want to have a biopsy either!

[Guest wiplashxxx]

Y

 

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[Carrie12345]

I was dx'ed in 2011. No official test.

While I absolutely believe in the existence of Fibro, I have no idea if it's accurate for me.  I've felt fine for the past 2 years after some big lifestyle changes. Perhaps those changes helped. Perhaps it was the wrong diagnosis.  Who knows?

[aaplank]

I was dx'ed in 2011. No official test.

While I absolutely believe in the existence of Fibro, I have no idea if it's accurate for me. I've felt fine for the past 2 years after some big lifestyle changes. Perhaps those changes helped. Perhaps it was the wrong diagnosis. Who knows?

Would you mind elaborating on what those lifestyle changes were? I need to do something about my health, but always feel too crappy to do anything about it.

[Carrie12345]

Would you mind elaborating on what those lifestyle changes were? I need to do something about my health, but always feel too crappy to do anything about it.

 

Well, I don't want to start another controversy, lol.

I gradually began eating healthier foods and adapting eating habits. Mostly, I ditched the vast majority of processed foods, made my body re-learn what reasonable calories felt like, and upped my protein intake.  

I forced myself to get a gym membership and forced myself to go 3x/wk. My focus was (is) on building muscle/strengthening tendons and ligaments.  I still find traditional cardio to be mental torture, lol.

 

It was NOT easy to get up and go when I felt so awful. I don't have any tips or tricks for that except to just do it, which is pretty much impossible until it isn't.  But it got much easier as time went on.

 

Again, I really don't know whether or not my diagnosis was accurate, so I'm not trying to sell diet and exercise as a fibro cure.  Just sharing the fact that my doctor said I had it, this is what I changed, and I feel better.

[Cammie]

My mom was diagnosed with fibro about 20 years ago....instead it actually was MS that was only correctly diagnosed about 10 years ago.

 

Be careful of a doctor that is quick to diagnose fibro without having eliminated everything else.

[Luanne]

My doctor had some blood work done and I find out the results of that next Wednesday.

[Jean in Newcastle]

I'm having a particularly fibro day.  

[Rose in BC]

I believe there was a thread on WTM (by RoseinBC?) about this, a year or two ago. I contributed with some information about the woman who sings with my favorite singer and a link to her web site or Facebook page. She suffered horribly from this, for 1 or 2 years and she was unable to tour with the group. They just finished a month of concerts in Europe and she was with them.  I hope if you have this that you will find relief.  She is the only person I know who has/had this and it was disabling for her, for 1 or 2 years. GL

 

Yes, it was me.  thanks again for taking the time back then to respond.

 

Fibro is a syndrome diagnosed by eliminating other things more easily detected in bloodwork, etc.

 

I've had it for about 6 years.  I believe the significant, relentless stress in my life contributes to my fibro and its continuing flares.

 

I call it my fake-disease, tongue in cheek.  it I very real.

 

[Katy]

So, stupid question perhaps...  but doesn't everyone have some tenderness at those spots?  They're pressure points used in martial arts, aren't they?

 

ETA:  I totally believe fibro exists, but I am tender in every one of those spots...  does that mean something's wrong with me?

[AuNaturel]

So, stupid question perhaps... but doesn't everyone have some tenderness at those spots? They're pressure points used in martial arts, aren't they?

 

ETA: I totally believe fibro exists, but I am tender in every one of those spots... does that mean something's wrong with me?

At least 9 of those 18 points are common tension acupressure points, especially for those that carry tension in their shoulders, have headaches, or experience sciatic nerve pain. Being pregnant, I have at least 11 of those spots sore. I think that goes to show that quite a lot besides fibro can cause those points to be super tender.

 

But apparently, people with fibro only need light touch to cause pain, not the deep massage that would trigger pain in pretty much anyone. That's the difference. But they were discussing throwing out the 18 point system 5 years ago anyway. Honestly, unless they can pinpoint fibromyalgia with a solid test (which they cannot), I would consider consistently hop doctors and alternative medicine practitioners until I found a diagnosis that included real treatment that worked to cure (not drugs to cover the symptoms). Western medicine has come a long way but it has a long way to go to know everything about the human body and disease.

 

By the way bee propolis/pollen has been known to help people with fibromyalgia diagnosis. Just be sure you aren't allergic to bees before trying it.

 

http://www.masscfids.org/news-a-events/266-tender-points-might-no-longer-be-used-for-diagnosis-of-fibromyalgia

 

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[Serenade]

My mom was diagnosed with fibro about 20 years ago....instead it actually was MS that was only correctly diagnosed about 10 years ago.

 

Be careful of a doctor that is quick to diagnose fibro without having eliminated everything else.

 

 

Interesting.

 

I know someone who lived with an MS diagnosis for 3o+ years before the doctors said, oops, it was really fibro.  Interesting how these two conditions can be confused.

[Jean in Newcastle]

I have fibro.  I am not "the face of fibro" though so my experience, while common among people with fibro, is not definitive:

 

I cannot do a massage without being in pain for days and perhaps weeks afterwards.  Touching those trigger points is not just some soreness - it triggers a fibro flare.

 

I have tried paleo, primal, the Zone, auto-immune, adrenal diets and probably a bunch more.  They are healthy diets but they have not lessened or taken away my flares.  (I still try to stay on these sorts of diets which are heavy produce, low to no grain and good healthy protein and fats.)

 

Exercise is tricky.  I need to move every day.  If I don't, I cramp up and become a semi-invalid.  I've been a semi-invalid multiple times in my adult life and each time I've painfully and painstakingly fought my way back to being semi functional only to go crashing back.  I go crashing back because if I overdo it then I go into flares.  And if I ignore my flares (as I've tried doing, to try and beat it) I can get very injured and fatigued to the point where I cannot get up at all.  The pain can get to the point where I cry just trying to lie down or to sit or to walk or to. . . . there is no relief from the pain because it is everywhere.  I have massive inflammation and find it difficult to breathe at times.  

 

I take a boatload of supplements and prescription meds.  I've spent more than a boatload of money on doctors of all stripes and specialties.  

 

What seems to help or at least doesn't hurt:  

Move some everyday but don't overdo it.

Take care of stressors whether they are outside your body (circumstances) or inside (infection, health problems that suck away at your body's defenses)

Eat a healthy diet

Lots of magnesium - epsom salt baths and CALM from Natural Vitality are my favorite ways to get it

Keep an eye on vitamn and mineral levels and supplement as needed

Gabapentin or other meds that work on the central nervous system (which is the current theory on fibro's etiology)

Try to get the best rest you can get.  For me, this includes certain supplements for sleep and a CPap machine.  

 

I can't remember if there is anything else.  I overdid it this last week and today I"m in a boatload of hurt and fatigue.  BTW - I knew it would most likely be like this but in my case, there has been no cure for the fibro that I was diagnosed with in 1992 or 93 (can't quite remember which).  I've decided to do the above but sometimes providing what my kids need is more important short term to me.  Today is an "armchair" day for me though my dh has reminded me that I must move too even though the thought makes me want to weep.