Recommended by Ricochet Members Created with Sketch. Fibromyalgia: My Story and AMA

 

It recently came up that many people seem to know someone with Fibromyalgia. From television ads for Lyrica, to personal experiences with patients, many people have some very interesting ideas about what the syndrome is and what it is not. I would like to counter these with a personal story about my experiences with my diagnosis and disease process.

After over ten years of crippling exhaustion, abnormal (but not too abnormal) test results, and multiple different referrals to varying specialists, I found myself in the office of a Rheumatologist. This man did a physical examination and said plainly, “You have fibromyalgia.” I was prescribed different supplements, told to get some rest, and to follow up in a period of weeks. I was told to take care of myself.

I hobbled out to my car and sat in the driver’s seat. I cried.

I sobbed like someone with a cancer diagnosis. More than sad, I was angry. I was angry and I was outraged. How is it not Lupus?! How is it not something actually real and treatable?!

I still wish it was Lupus.

What is Past Is Simple Medical History

At age 23, I had my daughter. I was a single mother. My mother had cancer. Stressful, sure, but not so stressful that it was insurmountable. I struggled to make a family with my daughter’s father. Slowly, his behavior changed. Still supportive, but more distant all the time, his behavior became more and more erratic. Understanding the pressure for a new family, I provided distance. This distance gave him more room for his infidelity. We broke up within 6 months of our daughter’s birth. I was exhausted by the stress and ongoing custody nonsense. It was physically and emotionally taxing, but I trudged on. My ex had a new girlfriend who was very interested in usurping my position as mother… I tolerated it. I cried, I complained to my friends, I went out, I went to the gym. I did all of the things they suggest you do. I ate right, I exercised, I went out with friends. I spent time with family.

I was exhausted.

Eventually, heartbreak healed, new love dawned for me and I spent almost 5 years with someone where the very existence of the relationship was always in question. This was stressful, but nothing unusual for me. My mom had cancer two more times and was diagnosed with a progressive inflammatory neurological disease.

In the midst of living, my new boyfriend encouraged me to consider my career options and I returned to nursing school. I began and completed nursing school. Every semester there was a crisis; some new stupidity with custody, my daughter’s grandmother misbehaving and attempting to feed her food she was allergic to. There was always something.

But all of this was the stress of living; the stress of life as I know it.

I began therapy at the health center for the stress of being in nursing school. I went for a safe place to vent and to learn new techniques. Every nursing student eventually went there in a tight ball of tension, so I found myself in good company. I was always exhausted, bone tired, and able to sleep at the drop of a hat. I was diagnosed with depression. Why shouldn’t I be depressed? I checked off the boxes: tired, under stress, weight gain, hypersomnia (sleeping too much). I was also tested for hypothyroidism which runs in my family. I was told that all of my blood work was normal. Normal, normal, normal.

Eventually, I graduated nursing school on the Dean’s List with multiple scholarships. I earned a position as a new graduate nurse working nights on my desired unit. Despite a long drawn out breakup that did more harm than necessary, life was more positive for me. I was gaining more and more independence, but I was still exhausted. In this time, I managed to lose over 50 pounds and became an avid runner. I began dating again.

But I was still exhausted. Any extra time I had was spent sleeping or in acquisition of caffeine.

I developed crippling shin splints. My shins were so inflamed, that they were pink and heat could be felt radiating off them from over 4 inches away. I was put on COX-inhibitors. I was told that I could no longer run. Period.

I was still exhausted.

It was always the same excuse. Stress. It is stress. Since 2003, I have been told a variation of the following: “Of course you’re exhausted! You have (a new baby, a toddler, started school, are in nursing school, a new job, started working night shift, gone through a break up, have a school-age child, etc)!” Over 10 years, I heard some variation of the excuse. Finally, I found a decent doctor who listened to me and the battery of tests began.

Testing, Testing

My labs began changing. I was no longer an exhausted 20-something. Now I was an exhausted 30 something. The hormone tests began and were rerun. The leader for my clinical problems was Polycystic Ovarian Syndrome, but I did not meet criteria. My hormone levels were too normal and upon ultrasound, my ovaries were normal. We began looking at more rare syndromes and processes, but my labs were all too normal. I began to have increased gastric problems. My food stopped digesting. I began taking medications three times a day to make my stomach actually work and to reduce nausea. I visited a doctor and had an upper endoscopy. Despite never having a problem with acid or reflux, I was discovered to have redness and swelling across all of my upper GI tract.

I did not receive a diagnosis at this point; I was simply told that I should probably start taking Nexium to reduce the stomach pain and the redness. It was apparently some sort of GERD. There was little follow up. The GI doctor determined there was nothing else for them to do.

I was still exhausted. I was exhausted and my food allergies increased. As a part of the larger barrage, I received allergy testing (both blood assay and skin testing) and discovered that my food allergies had been retained and further increased. I was reacting more severely to old allergies and had developed new ones. Now allergic to wheat, soy, and almonds, I was put on a delightful elimination diet. I was able to eat plain potato, plain white rice, plain chicken and plain beef. I was on this diet for ever 2 weeks. I stopped eating in protest. Life without coffee was untenable.

I managed to have a sleep study. The weight gain beyond what I had originally weighed troubled my doctor. I have always snored and there was a risk that all of this could be solved with a simple CPAP mask.

After one night, it was determined that I had no sleep apnea. My sleeping was completely normal.

None of these discoveries explained my primary complaint of exhaustion. Just walking up one flight of stairs would leave my muscles burning and twitching. I was found to be mildly anemic: I was anemic enough that for the first time in my life I no longer qualified to donate blood. My iron levels were found to be low. My vitamin D3 levels were also low, I was encouraged to start supplements.

I did.

One day, I woke up and could barely get out of bed. Beyond the daily pain of waking, feeling like I had been hit by a truck, aching all over, I simply could not make my muscles cooperate enough to get out of bed.

I was referred to a couple of Rheumatologists: one for an initial opinion and the other for a second.

Despite having certain positive autoimmune markers tracked and rising every 6 months, the tests were not sufficiently abnormal as to constitute a reason for alarm.

It’s Never Lupus

As House, MD likes to say, “It’s never Lupus.”

It wasn’t. At least, I still do not meet criteria for an official diagnosis. My neurological and autoimmune issues are such that they are not bad enough at this point to constitute any diagnosis other than Fibromyalgia.

Diagnosis is composed of:

1. Pain and symptoms over the past week, based on the total of number of painful areas out of 19 parts of the body plus level of severity of these symptoms:

a. Fatigue

b. Waking unrefreshed

c. Cognitive (memory or thought) problems

Plus number of other general physical symptoms

2. Symptoms lasting at least three months at a similar level
3. No other health problem that would explain the pain and other symptoms

Source: American College of Rheumatology, 2010 – See more at: http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia#sthash.V1KoqkoW.dpuf

This was in no way reassuring. As a nurse, I have had “fibromyalgia” patients; whiny middle-age drug-seeking women. I was not one of them. I was not going to be one of them. While I refuse to be one of those patients, we share a diagnosis. All different types of pain, mobility, strength, locations of pain can all fall under the vague and useless umbrella of “fibromyalgia”.

Even less reassuring was the treatment plan I was offered. I was told that therapy might help, diet and exercise (ha!) might help, but there was little to be done in terms of medication management. Two medications were approved for Fibromyalgia: Cymbalta and Lyrica. I was already taking a high dose of Cymbalta with no real positive effect on any symptoms. I wanted to stop taking it, but after one day off the medication and experiencing some of the discontinuation syndrome, I decided I would rather avoid it.

About 3 years post diagnosis, I’m still here and I’m still angry. I am a neuroscience nurse by training with specialties in public health, stroke, and neuroscience. I spend my waking free time on Ricochet and looking up information on Fibromyalgia research.

Your turn. Ask me anything about this.

There are 88 comments.

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  1. Gary McVey Contributor
    Gary McVey Joined in the first year of Ricochet Ricochet Charter Member

    What a stark, moving post. I rarely see a health professional’s evaluation of their own diagnosis. I’m not going to say “hang in there!” or other useless, well meaning encouragement for what you’ve been doing for years, but your Ricochet friends are grateful you have.

    • #1
    • January 11, 2017, at 6:29 PM PST
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  2. TheRightNurse Member
    TheRightNurse

    Gary McVey (View Comment):
    What a stark, moving post. I rarely see a health professional’s evaluation of their own diagnosis. I’m not going to say “hang in there!” or other useless, well meaning encouragement for what you’ve been doing for years, but your Ricochet friends are grateful you have.

    The feelings I generally have about it involve profanity unbecoming of this conversation site.

    • #2
    • January 11, 2017, at 6:30 PM PST
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  3. Manny Member

    I don’t really have any questions. Try not to be too angry, though I can understand it. It really isn’t constructive. My prayers for you and your child.

    • #3
    • January 11, 2017, at 6:58 PM PST
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  4. TheRightNurse Member
    TheRightNurse

    Manny (View Comment):
    I don’t really have any questions. Try not to be too angry, though I can understand it. It really isn’t constructive. My prayers for you and your child.

    Yeah, I keep it in check. I’m not much of an angry person, but I do try to vent it occasionally….on liberals. ;)

    • #4
    • January 11, 2017, at 7:08 PM PST
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  5. Boss Mongo Member

    TheRightNurse: Your turn. Ask me anything about this.

    Nope. Knowing your bio, knowing your credentials, I know you’re not a poser, a faker, or a disability rent-seeker. So, no questions, but the sincere wish you find surcease from you affliction.

    • #5
    • January 11, 2017, at 7:12 PM PST
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  6. Ann Inactive
    Ann

    Thank you for sharing your story and frustrations with this experience in hopes of helping others here. That is very kind of you. I have only ever heard of 2 people having this. Both women and they both got over it but I have no idea how as these were stories related to me some years ago. While it isn’t an answer it is a window of hope. May you see the light from this window soon also.

    • #6
    • January 11, 2017, at 7:27 PM PST
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  7. Herbert defender of the Realm,… Inactive

    My mom is experiencing similar symptoms, all the tests, no definitive diagnosis. She believes her symptoms are an adverse reaction to antibiotics, twice before in her lifetime she has experienced similar symptoms. She claims it takes months for her to recover from an adverse reaction to antibiotics. Any possibility of that with you?

    • #7
    • January 11, 2017, at 7:27 PM PST
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  8. MarciN Member

    I am sorry that you are suffering this. I have to think that patients with this disorder need someone able to describe it to researchers and doctors, and you have a gift for doing so.

    • #8
    • January 11, 2017, at 7:37 PM PST
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  9. Midget Faded Rattlesnake Contributor

    TheRightNurse: This was in no way reassuring. As a nurse, I have had “fibromyalgia” patients; whiny middle-age drug-seeking women. I was not one of them. I was not going to be one of them. While I refuse to be one of those patients, we share a diagnosis. All different types of pain, mobility, strength, locations of pain can all fall under the vague and useless umbrella of “fibromyalgia”.

    Hey, at least it wasn’t “chronic fatigue syndrome”! ;-P

    Sick humor aside, now for a serious question:

    Does it go away on Prednisone? (That is, do anti-inflammatory steroids actually treat it?)

    • #9
    • January 11, 2017, at 7:38 PM PST
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  10. Goddess of Discord Member

    I wish I knew what to ask. It’s got to be so devastatingly frustrating. My good internal medicine physician friend rolled her eyes one time I mentioned I had a co-worker diagnosed with fibro. I sensed that she didn’t take the diagnosis seriously (middle-aged whiny women, etc). Do you find that being a nurse keeps skeptics at bay?

    • #10
    • January 11, 2017, at 7:40 PM PST
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  11. Profile Photo Member

    TheRightNurse:Diagnosis is composed of:

    1. Pain and symptoms over the past week, based on the total of number of painful areas out of 19 parts of the body plus level of severity of these symptoms:

    a. Fatigue

    b. Waking unrefreshed

    c. Cognitive (memory or thought) problems

    Plus number of other general physical symptoms

    2. Symptoms lasting at least three months at a similar level
    3. No other health problem that would explain the pain and other symptoms

    Is that the medical way to say they can’t figure it out?

    • #11
    • January 11, 2017, at 7:54 PM PST
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  12. DrRich Inactive

    I certainly can’t make diagnoses on line, and even if I could I would not say so. I am not trying to diagnose you. I am trying to give you something to think about that you might take up with your doctor. Your story seems very familiar to me.

    There is a family of conditions that doctors understand but poorly, that affect mainly young, otherwise healthy women, that are accompanied by no reliable physical or laboratory findings, that cause a variety of variable symptoms that come and go in a largely unpredictable fashion, and that, while they are honest-go-goodness illnesses, often get the victim labeled as neurotic or nuts – as crazy women if you will. The onset is commonly out of the blue, often follows an acute illness or trauma (including childbirth), and often sufferers were in particularly good physical condition prior to becoming sick. Sometimes victims are given a specific diagnosis depending on the predominant symptom of the moment, or the specialist they see. Rheumatologists are likely to call it fibromyalgia, cardiologists IST or POTS, gastroenterologists IBS, PCPs will say CFS, psychiatrists PTS, etc. Because these conditions usually involve prominent autonomic dysfunction at some point or other, I call them the dysautonomias. I find it helpful to be a lumper rather than a splitter here, because the clinical course can be similar despite the differing diagnoses. If you’re interested here’s more on this.

    • #12
    • January 11, 2017, at 8:01 PM PST
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  13. AUMom Member
    AUMom Joined in the first year of Ricochet Ricochet Charter Member

    Hear! Hear!

    Well, except for the name and a few other changes, my story is the same one.

    I salute you in your fight. I stand with you in the frustration/anger. I dream with you that some day, we will get enough rest. I’ll be d@#$ed before I become one of those whiny women who cry, “But I have fibromyalgia.”

    • #13
    • January 11, 2017, at 8:23 PM PST
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  14. Midget Faded Rattlesnake Contributor

    TheRightNurse: As a nurse, I have had “fibromyalgia” patients; whiny middle-age drug-seeking women. I was not one of them. I was not going to be one of them. While I refuse to be one of those patients, we share a diagnosis.

    Another question – How hard is it to avoid a sort of “impostor syndrome”? The worry that “what if I am one of the whiners, after all?” (and perhaps a sense that maybe no accomplishment is enough to prove you’re not a whiner?)

    • #14
    • January 11, 2017, at 8:31 PM PST
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  15. AUMom Member
    AUMom Joined in the first year of Ricochet Ricochet Charter Member

    Midget Faded Rattlesnake (View Comment):

    TheRightNurse: As a nurse, I have had “fibromyalgia” patients; whiny middle-age drug-seeking women. I was not one of them. I was not going to be one of them. While I refuse to be one of those patients, we share a diagnosis.

    Another question – How hard is it to avoid a sort of “impostor syndrome”? The worry that “what if I am one of the whiners, after all?” (and perhaps a sense that maybe no accomplishment is enough to prove you’re not a whiner?)

    Never give up. Yes, there are days when you don’t get dressed or move. Today was that way for me. But always, always, concentrate on some thing else, some one else. The people I know who don’t struggle with making life about something other than self cave and become self-absorbed one pain at time. It is a daily battle.

    • #15
    • January 11, 2017, at 8:34 PM PST
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  16. Jason Rudert Member

    Have you ever been put on thyroid medication?

    Anti-depressants?

    Had your blood tested for mercury?

    Had an MRI to look for Chiari malformaton or excessive cervical flexibility?

    • #16
    • January 11, 2017, at 9:08 PM PST
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  17. TheRightNurse Member
    TheRightNurse

    Herbert (View Comment):
    My mom is experiencing similar symptoms, all the tests, no definitive diagnosis. She believes her symptoms are an adverse reaction to antibiotics, twice before in her lifetime she has experienced similar symptoms. She claims it takes months for her to recover from an adverse reaction to antibiotics. Any possibility of that with you?

    It is possible for me; we’re looking from an autoimmune angle, always. But I had to get a new doctor, so I’m effectively starting over.

    As for your mom, if she had fibromyalgia: people have “flares” which can be related to illness or instances of stress. They can get better. Some people do not have very severe flares and some people do not have multiple flares. Very little is really known about this syndrome.

    • #17
    • January 11, 2017, at 9:20 PM PST
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  18. Jason Rudert Member

    Fortunately I’m not burdened by any qualms about diagnosing you over the internet. We’ve known each other in the PIT for a while. I think you have something in this family of diseases, too , because I read this other thing on the internet:

    http://www.healthrising.org/blog/2013/08/22/dr-rowe-on-the-hunt-a-search-for-chronic-fatigue-syndrome/

    Of note: “huge overlap between syndromes” and the incidence of some of these things like EDS being very low in the general population but remarkably high in this doc’s clinic.

    • #18
    • January 11, 2017, at 9:21 PM PST
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  19. TheRightNurse Member
    TheRightNurse

    Midget Faded Rattlesnake (View Comment):
    Does it go away on Prednisone? (That is, do anti-inflammatory steroids actually treat it?)

    Nope. I feel better when I’m on steroids; usually I have a better tolerance for a number of things and better energy level. I’m just on this side of a lupus diagnosis, for example, so I took plaquenil for a trial to see if it might help. I can’t really say that it did much of anything.

    • #19
    • January 11, 2017, at 9:22 PM PST
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  20. Jason Rudert Member

    But let’s put our money where our mouth is. I betcha $20.00 it’s thyroid.Because you can test in the normal range but still be deficient.

    • #20
    • January 11, 2017, at 9:24 PM PST
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  21. TheRightNurse Member
    TheRightNurse

    Goddess of Discord (View Comment):
    I sensed that she didn’t take the diagnosis seriously (middle-aged whiny women, etc). Do you find that being a nurse keeps skeptics at bay?

    Honestly? No. Nurses can sometimes be the worst. I know I roll my eyes when we have a spine surgical patient (3rd surgery), opiate dependent with “fibromyalgia”. Oh yeah. I’ll bet. I’ve found that it helps in diagnostics with some doctors, but not with all of them.

    • #21
    • January 11, 2017, at 9:25 PM PST
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  22. TheRightNurse Member
    TheRightNurse

    DrRich (View Comment):
    Because these conditions usually involve prominent autonomic dysfunction at some point or other, I call them the dysautonomias. I find it helpful to be a lumper rather than a splitter here, because the clinical course can be similar despite the differing diagnoses.

    Other than the stupid diagnosis that I hate, my doctor and I generally refer to my issues as a “currently undiagnosed autoimmune/neuromuscular sensory disorder”. My mom had many of these issues before being diagnosed (many years later) with CIDP and MS.

    • #22
    • January 11, 2017, at 9:28 PM PST
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  23. TheRightNurse Member
    TheRightNurse

    Midget Faded Rattlesnake (View Comment):
    Another question – How hard is it to avoid a sort of “impostor syndrome”? The worry that “what if I am one of the whiners, after all?” (and perhaps a sense that maybe no accomplishment is enough to prove you’re not a whiner?)

    I worry that I am one of those or that I will become one of those. I look well enough. It’s hard to explain that after 18 hours of sleep a day for multiple days, I’m still exhausted. My house is a mess because I simply do not have enough time to clean/parent/work. I do 2 of the 3 and I get some stuff done in between on days when I’m feeling particularly great.

    I feel like as long as I have this diagnosis, I will be a “whiner” and nothing will be found. In the meantime, I’ve developed a foot drop, I have different random neuropathies (sometimes a particular part of my back feels like it’s literally on fire, other times my entire body itches under the skin and keeps me awake).

    • #23
    • January 11, 2017, at 9:32 PM PST
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  24. TheRightNurse Member
    TheRightNurse

    AUMom (View Comment):
    But always, always, concentrate on some thing else, some one else. The people I know who don’t struggle with making life about something other than self cave and become self-absorbed one pain at time. It is a daily battle.

    Life is all about other people! This is a great distraction. It’s just a matter of who else needs help. It keeps me busy with concrete things that I can do.

    • #24
    • January 11, 2017, at 9:34 PM PST
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  25. TheRightNurse Member
    TheRightNurse

    Jason Rudert (View Comment):
    Have you ever been put on thyroid medication?

    Anti-depressants?

    Had your blood tested for mercury?

    Had an MRI to look for Chiari malformaton or excessive cervical flexibility?

    1. Yes. 2. Yes. 3. Yes. 4. Yes.

    I am currently still on thyroid medication and an SNRI just for good measure (Cymbalta is a SNRI). Any time someone presents with exhaustion, they default to depression, particularly in women. The problem is that I’m not terribly sad. I’m just so tired I can fall asleep while driving in the day time. And when it comes to my MRI, my brain is apparently there, normal, and my neck curvature is reduced (we already knew that).

    • #25
    • January 11, 2017, at 9:37 PM PST
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  26. Midget Faded Rattlesnake Contributor

    Jason Rudert (View Comment):
    …and the incidence of some of these things like EDS being very low in the general population but remarkably high in this doc’s clinic.

    RightNurse would have told us if she’s a contortionist, right?

    • #26
    • January 11, 2017, at 9:38 PM PST
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  27. TheRightNurse Member
    TheRightNurse

    Jason Rudert (View Comment):
    But let’s put our money where our mouth is. I betcha $20.00 it’s thyroid.Because you can test in the normal range but still be deficient.

    That would be super cool. Let me know if you can also find me a doctor that will increase the amount of levothyroxine I’m taking without caring about my labs being normal! I’d love that.

    • #27
    • January 11, 2017, at 9:38 PM PST
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  28. Nanda Panjandrum Inactive

    Thanks for this, TheRightNurse! I needed to experience your resolve to take each day as it’s dealt…CP, shot tendons, and osteoarthritis have changed my ADL assistance strategies dramatically over the past decade or so…More equipment, less participation. Thanks for the reminder that what I need help doing is not who I am!

    • #28
    • January 11, 2017, at 9:43 PM PST
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  29. TheRightNurse Member
    TheRightNurse

    Nanda Panjandrum (View Comment):
    Thanks for this, TheRightNurse! I needed to experience your resolve to take each day as it’s dealt…CP, shot tendons, and osteoarthritis have changed my ADL assistance strategies dramatically over the past decade or so…More equipment, less participation. Thanks for the reminder that what I need help doing is not who I am!

    Thanks, Nanda! It’s just your “stuff”. Any time my experiences lend anyone anything positive, I’m in!

    • #29
    • January 11, 2017, at 9:48 PM PST
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  30. TheRightNurse Member
    TheRightNurse

    Matt White (View Comment):
    Is that the medical way to say they can’t figure it out?

    Yep. It’s a big ol’ junk diagnosis STILL. As far as new research goes, however, they’re finding that it is a Central Nervous System disorder. It seems to have a genetic component. It’s a pretty big umbrella, though. If any doctor stops searching for a diagnosis, almost anything can qualify. It’s maddening.

    • #30
    • January 11, 2017, at 9:55 PM PST
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