A Completely Unscientific Fibromyalgia Survey

October 1, 2007

So, I want to ask a bunch of nosy questions to find out how many of these crazy symptoms I have are shared by others. We all know about the pain and the fatigue, but I’d like to know a little more. All of these questions are based on either my own experiences, or things I’ve read that are supposed commonalities among people with Fibro. Maybe by comparing notes, we can come up with some answers.

I can’t figure out how to do this on WordPress as a form, so I’ve answered my own questions below in a stupidly simple format, by editing and copying the questions, and posting my answers in the “Comments” section. You can also e-mail your answers to moonbeam.mcqueen at yahoo. Feel free to skip over any questions that you deem too personal or difficult. Also, feel free to add any other thoughts you may have. I’ll post the results later.

Have you or do you experience any of the following symptoms?

1: TMJ

2: Irritable Bowel Syndrome

3: Other digestive issues (i.e., Reflux)

4: Depression

5: Pain in places not listed on a trigger point chart (example: soles of feet)

6: Lots of mental activity during sleep.

7: Sudden bouts of fatigue

8: Do you have flares after a stressful situation? How long do they last?

9: Blotches, hives, or other weird skin issues .

10: Lack of Coordination/ Clumsiness

11: Fogginess/ Forgetfulness

12: “Female Problems”- gynecological issues

13: Energy bursts followed by a complete physical meltdown.

14: Frequent earaches

15: Chest pain/ high blood pressure

Any other weird symptoms?

Approximately how many times have you been to the Emergency Room in the past five years?

Have you experienced any trauma that you can trace as the cause of your Fibro?

I read somewhere that a majority of women with Fibromyalgia were extremely close to their mothers as children. As adults, they still tend to still be close, but have a complicated relationship. Is this true of you?

Are you on medications? Do they bring you relief?

Approximately how many doctors and specialists have you seen in the last two years?

Do you feel guilty about your Fibro?

Do you spend less time with friends and family since the onset of your Fibromyalgia?

Has Fibromyalgia changed your employment situation? How?

What brings you the most relief?

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13 Responses to “A Completely Unscientific Fibromyalgia Survey”


  1. 1: TMJ
    *I used to have this, but realized it was because of Cymbalta. Quit taking it, and the TMJ went away.

    2: Irritable Bowel Syndrome
    *Used to. Not so much any more. I quit drinking milk, and it seems to help.

    3: Other digestive issues (i.e., Reflux) *Occasional Reflux, when stress is high or if I’ve eaten too much pizza 🙂

    4: Depression
    *I have bouts of it, and it’s probably there at a low level all the time. Seems to be much worse when trying to juggle a 9 to 5.

    5: Pain in places not listed on a trigger point chart (example: soles of feet)
    *Soles of feet, knees. My hips and legs always get it the worst, it seems.

    6: Lots of mental activity during sleep
    *Tons. So much going on that I’m exhausted when I wake up. And I can almost never remember any of it.

    7: Sudden bouts of fatigue
    *Yep. They blindside me. I never expect it.

    8: Do you have flares after a stressful situation? How long do they last?
    *Definitely. And stressful could mean something as simple as a car trip. They usually last 3 to 4 days. My mind and body function at a “just barely getting by” level.

    9: Blotches, hives, or other weird skin issues.
    *I get hivey blotches after a shower. Itchy too.

    10: Lack of Coordination/ Clumsiness-
    *Oh yes.

    11: Fogginess/ Forgetfulness- How often.
    *Yes. I’ll have a really bad fog day at least twice a week. I’m extremely forgetful, to the point that I’ve permanently misplaced things, lost credit cards, etc.

    12: “Female Problems”- gynecological issues.
    *Bad ones. I have endometriosis, and I’m also pre-menopausal, so it all gets very confusing. I should buy stock in Tampax though.

    13: Energy bursts followed by a complete physical meltdown.
    Weekly.

    14: Frequent earaches-
    *This is odd. I used to get these excruciating earaches at work, to the point where I couldn’t even turn my head. It must be stress related, because since I’ve been on leave, I haven’t had one earache.

    15: Chest pain/ high blood pressure-
    *Yep. This is how my fibro got diagnosed. Chest pains.

    Any other weird symptoms?
    *Not that I can think of. Unless you count my pickle addiction. Oh, and my hair falls out a lot. Fortunately, I have enough so that I can do a comb over, if it ever comes down to it.

    Approximately how many times have you been to the Emergency Room in the past five years?
    *Seven or eight. I used to go a lot, because before I was diagnosed, the pain in my chest scared me to death.

    Have you experienced any trauma that you can trace as the cause of your Fibro?
    *Nope. I’ve had trauma, many years ago, but they say that the Fibro will come on within a year or two of it happening. This hasn’t been the case with me.

    I read somewhere that a majority of women with Fibromyalgia were extremely close to their mothers as children. As adults, they still tend to still be close, but have a complicated relationship. Is this true of you?
    *Yes.

    Are you on medications? Do they bring you relief?
    I have tried many, but as soon as I give them a test run, and find that they don’t work, I get off of them. I take Ibuprofen, a very low dose of Lexapro (10 mg), and Lisinopril for high blood pressure. I used to have low blood pressure, but Fibro’s changed that. Also, if I start getting IBS, I take a low dosage of Hyoscyamine, but haven’t for a while.

    Approximately how many doctors and specialists have you seen in the last two years?
    *Too many to count. In addition to my regular doctor, I’ve been to Rheumatologists, pain specialists, ENT guy, massage therapists, and two fibro experts. I’ve talked to the Arthritis Foundation and a couple of Fibro experts on the phone as well. I’ve sworn all of this off for now.

    Do you feel guilty about your Fibro?
    *Incredibly so.

    Do you spend less time with friends and family since the onset of your Fibromyalgia?
    *Yes. A lot less.
    Has Fibromyalgia changed your employment situation? How?
    *Yes. Um, I think I’m unemployed, but moving toward self-employment.

    Additional comments:
    I find it increasingly difficult to do things I used to do. Last year, I was riding my bicycle approximately sixty miles each weekend. Now, I can do maybe fifteen. This makes me sad.

  2. Little Miss Says:

    I will send you via email most of my answers to your survey questions, but I can tell you here what has helped me most recently.

    A combination of chiropractor, physical therapy, and massage. These three people help me immensely, especially as I’m fortunate to have a physical therapist who has chronic fatigue syndrome. She helps me with ways to alter my lifestyle but not crimp it, to listen to my body and not ignore it (something I’ve done – ignore, that is – for my entire life.)

    When I have a flare, such as the burning ache and pains in my legs, a very hot bath helps.

    I’m not on any meds – yet – and I hope I can keep it that way. 🙂

    More via email.


  3. Little Miss: Thank you so much for taking the time to complete this. The survey’s getting a lot of hits, but I think the responses will be slow in coming. I’m keeping them in a folder in my computer, and will compile the results as they trickle in. It may be a while before I can post results. I appreciate your help in my detective work. I’m really trying to figure out common threads here.

  4. Little Miss Says:

    Well, I put up a post that links to your survey as well, so hopefully that will garner more hits as well – I think we can all learn from the answers to your questions, no matter how slow the responses come in. You asked many of the same questions I’ve been interested in knowing the answers to.

  5. ouiser Says:

    As you know, I still don’t think I have FM, but I will answer the questions below as if I do since some of the symptoms I have match up to others that can accompany FM. You may or may not want to include my responses in your survey.

    1: TMJ… NO

    2: Irritable Bowel Syndrome… I HAVE SYMPTOMS OF IT BUT NO DX FOR IT

    3: Other digestive issues (i.e., Reflux… YES, REFLUX

    4: Depression… OCCASIONALLY

    5: Pain in places not listed on a trigger point chart (example: soles of feet)… ALL OF MY PAINS ARE NOT LISTED ON THE TENDER POINT CHART AND THAT’S WHY I’M SO CONVINCED I DON’T HAVE FM. YOU WOULD THINK I WOULD AT LEAST HAVE ONE TENDER POINT, RIGHT?

    6: Lots of mental activity during sleep. ONLY WHEN TAKING CERTAIN MEDS

    7: Sudden bouts of fatigue YES

    8: Do you have flares after a stressful situation? How long do they last? SOMETIMES YES, SOMETIMES NO. HAVE CONCLUDED THAT PHYSICAL ACTIVITY OR STRESS DON’T REALLY “BRING ON” THE FLARE, BUT WHEN I AM IN A FLARE, THEY CAN SURE MAKE IT WORSE.

    9: Blotches, hives, or other weird skin issues. HIVES AND PHOTOSENSITIVE SKIN RASHES

    10: Lack of Coordination/ Clumsiness NOPE

    11: Fogginess/ Forgetfulness OH YES, HE, HE

    12: “Female Problems”- gynecological issues WHEN IN A FLARE, “GEORGE” STARTS KNOCKING TWO WEEKS EARLY WITH GUT WRENCHING CRAMPS AND I AM MORE TIRED AND ACHY THAN USUAL. USE TO HARDLY NOTICE “GEORGE”.

    13: Energy bursts followed by a complete physical meltdown. I DON’T HAVE ENERGY BURSTS SO MUCH AS ALL THE SYMPTOMS STOP FOR A BRIEF PERIOD.

    14: Frequent earaches NOPE

    15: Chest pain/ high blood pressure I HAVE FREQUENT CHEST PAIN THAT HAS BEEN ATTRIBUTED TO ANXIETY (OK, SURE) BUT NORMAL BLOOD PRESSURE

    Any other weird symptoms? IN FM WORLD, THERE’S NOT A LOT THAT OTHERS HAVEN’T SEEN OR HAD, HE, HE

    Approximately how many times have you been to the Emergency Room in the past five years? ONCE

    Have you experienced any trauma that you can trace as the cause of your Fibro? I BLAME MY EOSINOPHILIA FOR MY FM SYMPTOMS

    I read somewhere that a majority of women with Fibromyalgia were extremely close to their mothers as children. As adults, they still tend to still be close, but have a complicated relationship. Is this true of you? NOPE, I WAS CLOSER TO MY GRANDPARENTS WHEN I WAS YOUNG BUT VERY CLOSE WITH MY MOTHER NOW

    Are you on medications? Do they bring you relief? NOPE, STOPPED TAKING EVERYTHING

    Approximately how many doctors and specialists have you seen in the last two years? ASIDE FROM REGULAR DOCS… A HEMATOLOGIST, ONCOLOGIST, NEUROLOGIST, RHEUMATOLOGIST, DERMATOLOGIST, ORTHOPEDIC SPECIALIST

    Do you feel guilty about your Fibro? NOT SO MUCH ANYMORE

    Do you spend less time with friends and family since the onset of your Fibromyalgia? WHEN I’M FEELING MY WORST

    Has Fibromyalgia changed your employment situation? How? YES I AM NO LONGER ABLE TO WORK

    What brings you the most relief? A REPRIEVE


  6. Ouiser- THANK YOU! You’re an angel!

  7. Annie Says:

    Hello. Been reading some of the responses to your mini survey. Very interesting say I as I sit here with burning arms and freezing cold legs and it is about 26c(warm).I cannot work out how to fill in your survey but I have all of the symptoms you have mentioned plus some unique to me. I have been unable to work for 13 yrs and absolutley feel guilty about that and so many other things that have been caused by this illness.
    Anne in Australia


  8. @ Annie: So glad you found my site all the way from Oz. I’d love to know about some of the symptoms that are unique to you. It seems that there are a lot of commonalities, but then there are those very individual symptoms that seem to go along with this.

    Guilt is not good in combination with Fibro, but I don’t know how to completely alleviate it. If you find out, please let me know! And I hope you feel better soon.

  9. TeriO Says:

    Have you or do you experience any of the following symptoms?

    1: TMJ:Yes, but I think it developed from wearing braces.

    2: Irritable Bowel Syndrome: Yes, mild though

    3: Other digestive issues (i.e., Reflux): No

    4: Depression: No

    5: Pain in places not listed on a trigger point chart (example: soles of feet): More like achiness, odd pains in different places on different days

    6: Lots of mental activity during sleep.: Yes

    7: Sudden bouts of fatigue: Yes

    8: Do you have flares after a stressful situation? How long do they last? Not really

    9: Blotches, hives, or other weird skin issues . Yes

    10: Lack of Coordination/ Clumsiness: Definitely

    11: Fogginess/ Forgetfulness: Yes

    12: “Female Problems”- gynecological issues: Yes

    13: Energy bursts followed by a complete physical meltdown.: Yes

    14: Frequent earaches: No

    15: Chest pain/ high blood pressure: No

    Any other weird symptoms? My main problem is the 13-15 migraines I get a month.

    Approximately how many times have you been to the Emergency Room in the past five years? 3

    Have you experienced any trauma that you can trace as the cause of your Fibro? I think childbirth/ labor brought it on.

    I read somewhere that a majority of women with Fibromyalgia were extremely close to their mothers as children. As adults, they still tend to still be close, but have a complicated relationship. Is this true of you? Close to my mother yes.

    Are you on medications? Do they bring you relief? Meds don’t help much. Have tried lots. Only my migraine med Zomig helps

    Approximately how many doctors and specialists have you seen in the last two years? about 6-7

    Do you feel guilty about your Fibro? No

    Do you spend less time with friends and family since the onset of your Fibromyalgia? Yes

    Has Fibromyalgia changed your employment situation? How? I am considering switching to a different full-time position due to fibro.


  10. @TeriO: Thank you for answering this. I’m still slowly collecting answers to it, both here and via e-mail. I’ll post results when I get more gathered.

    I’ve never really had the migraines until recently. I feel for you– they can be debilitating.

  11. TeriO Says:

    Moon-
    Yeah the migraines and the fatigue are the most problematic symptoms I have. The headaches are completely out of hand!

  12. Lesley Says:

    I have just found this site while trying to find out some more about FMS. I am very clumsy and having just hit my left shoulder off the door for the umpteenth time, I decided to check it out.

    In answer to your survey – here goes:
    1. TMJ – yes
    2. IBS – yes
    3. Other digestive issues – yes
    4. Depression – yes
    5.

  13. mercerd Says:

    interesting material, where such topics do you find? I will often go

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