February 26

46 comments

The Official MOST Annoying Fibromyalgia Symptom Ever!

By Sue Ingebretson

February 26, 2013

chronic illness, cognitive dysfunction, fatigue, fibrofog, fibromyalgia community, horse race, memory issues, pain, sleep, survey, symptoms

THE OFFICIAL MOST ANNOYING FIBROMYALGIA SYMPTOM EVER!

Can I just start by saying, I love you guys? When it comes to the fibromyalgia community, you’re the best!

I’d written a little post for today on what symptoms bother us the most – BESIDES pain and fatigue. I had my own opinions on the subject, but I thought I’d take a quick check on the pulse of society. I went right to the horse’s mouth (so to speak) – to Facebook. I asked y’all this quick question yesterday morning:

“Let’s make it interesting this week. If you could remove any ONE symptom (besides pain/fatigue) what would it be?”

Fibromyalgia Survey

I thought I’d get a nice show of hands. I wasn’t wrong. Over 50 of you chimed in with an answer (and some, more than one). It was interesting to see how the answers changed organically throughout the day. I did get the main result I expected. Then later I got some answers I didn’t expect. Even later, I got a whole bunch of answers I never saw coming.

This is a great representation of the individuality of the fibromyalgia and chronic illness community.

When asked about our annoying symptoms, we sing in unison. When asked to get specific about WHAT annoys us – we sing in 23 part harmony. But, at least we’re still making music together.

The following are the official results from this very “authentic” survey. (I’m sorry the chart is so small – technical difficulties here won’t let me make it bigger.) There’s much more to say on the subject (which is for future posts), but for now, here are the details on this very exciting survey — much like a thundering horse race.

I monitored the results throughout the day, yesterday, and here’s the minute by minute commentary on how they played out.

FibromyalgiaSurvey2013“And … they’re … off!”

Right out of the gate, Fibrofog runs ahead at breakneck speed. Sleep Issues comes up behind early on and soon enough the two are neck and neck on the back stretch. Fear/Anxiety gets a slow start and tries to catch up to Sleep Issues who’s starting to lag behind the leader. Unpredictability meets up with Fear/Anxiety as Fibrofog sprints ahead leaving the rest in the dust.

Gut/IBS joins the field behind Unpredictability. And, there’s a true dark horse, Other People, trotting onto the track and bringing up the rear. But wait … it’s not over!

Fibrofog has easily clinched first place with Sleep Issues placing a clear but distant second. Fear/Anxiety and Unpredictability tie for fourth place, followed by Gut/IBS in fifth, and then the dark horse, Other People in 6th.

Tagging along at the end is the most amazing sight. It’s an ELEVEN way tie for 7th place with Muscle Pain, Fragrance Sensitivity, Itching, Headaches, Morning Nausea, Dizziness, Light Sensitivity, Tinnitus, Body Temperature, Rude People, and Restless Leg Syndrome all crossing the finish line shoulder to shoulder.

Race and Fibromyalgia Survey

But in this race full of surprises, even that amazing and unprecedented tie wasn’t the greatest achievement. No, that distinction goes to the colossal feat of the THIRD place winner going to Pain/Fatiguea horse that wasn’t even entered in the race!

To me, the surprising results of this survey actually beg a bigger (and not-so-surprising) question:

Why is the collective fibromyalgia and chronic illness community STILL treated as if we’re all the same?

Anyone can see we’re different. Our symptoms are not only different, we experience even the same symptoms in different ways and in different intensities. I expected to see fibrofog as a #1 response. I also expected sleep to be a close second. I wasn’t so accurate there. I didn’t realize that fibrofog would be such a far and away leader. Of course, I expected a few singular responses (symptoms that only some placed first in their list), but I had no idea there would be so many.

But what really blew my mind away?  Those who aren’t even as annoyed with their own symptoms as they are with those around them! That shouts volumes (and will definitely provide fodder for future posts).

And, of course, then there are those who responded with the very two symptoms that were not included in this survey. We can laugh, but we’re definitely laughing at ourselves. Maybe some replied with pain or fatigue intentionally. Maybe some didn’t see/read/interpret the question very clearly. Either way, I could have easily foisted those responses into the fibrofog category, but I felt they deserved their own attention.

I know I can relate to fibrofog (even though it’s now a rare occurrence). I’m grateful for that experience and it has served me well. In fact, I speak fibrofog fluently. I continue to work on this finely tuned skill which allows me to serve as a much-needed translator in tragic public scenarios such as this:

Fibromyalgia and Trout

WAITER: Welcome to Frank’s Fish House. We had a packed house earlier, so I’m afraid we’re out of today’s specials, both the salmon and the trout.

FIBROFOG CUSTOMER: Oh, that’s all right — I don’t like tuna. I’ll just have the trout.

MUCH-NEEDED TRANSLATION: The waiter said– salmon and trout. The fibrofog customer “heard and processed” — salmon and tuna. She doesn’t like tuna. She’s not so fond of salmon either. So, the winning choice? Trout it is.

Stay tuned for more posts on the results of this informative survey. And, in the meantime, I have a question for you:

Do you speak fluent fibrofog?

  1. Aside from all the rest, the lack of a functioning immune system, especially during the flu season, is a big problem in my humble opinion….

  2. Amen and amen! I missed answering the question but I would wholeheartedly agree: fibro-fog! Hate it, hate it! The forgetfulness! Grrr! Great responses and post!

    1. Thanks Lynn – I have lots of opinions why fibrofog is detested above all else, but I LOVE to hear what other people think. Thanks for chiming in!

  3. So happy I received this mail…….I found it in my “Junk” mail….yet is means the world to me.
    Fibro Fog/ pain would be at the top of my list .
    Thanks Sue for posting this.
    I am not sure if I speak Fibro Fog or not….maybe that is the reason my daughters tell me “Mom, you are not answering the question !” LOL

  4. This has to be one of the very best articles I’ve come across to share with spouses! This will put everything in perspective, while helping each of us to understand our sameness AND our differences! Kudos, Sue! *:))) Shared!

    1. Pati — thanks so much for the great comment! I hope you find it useful to share with friends and family.

  5. Excellent as always. You never disappoint and are always on target. It’s refreshing and comforting to know other people “get it”.

    And my #1 symptom is…FibroFog!

  6. yes fluent in fibro-fog. I’ve just spent 5 nights/days with out any heat or hot water due to leaving my utility cards in a shop. It took me that long to figure out where they were! Due to being freezing in my house I ‘seized up’ and could do almost nothing that entire time and my mood plummeted along with the temperature in my house!! My only option was to sit out in the sun and thaw out when I finally managed to drag my self out doors. (Im infamous at my bank for also leaving bank cards in shops by the way).

    1. Thanks for sharing, Carolyn! It’s so nice for all of us to know that we’re not alone in forgetting things, losing things, or just having a hard time getting going for the day. I hope you’re able to thaw out soon, and sitting in the sun for a bit is a great solution and one we can all benefit from!

  7. I missed this as well, but I would say Fibro/Fog is the worst thing (besides pain and insomnia). I have learned so much about Fibro since finding Dr. Fibro! It’s nice also to share and hear what other people are going through. Although I was just diagnosed 3 years ago, I realize now that I have had this for many, many years! It’s all making sense now! 🙂

    I love this article! Thank you!! 🙂

    1. Etta-Mae — thanks so much for your input. I’m glad you’re finding answers to your questions and beginning to put the pieces together for you. I appreciate your kind words!

    2. Fibro -fog is very disturbing, I agree but my sleeping has changed. I have always been a night owl ,(a musician) and parents worked nights but now im up all night and sleep only about 3-5 hrs.if that and this has been going on for at least the last 13 yrs.(typing this at 5:17 am). The pain, I have truly learned to live with…well as much as possible. But fibro fog, is a strange animal…hmm…i dont put things back where they go. I *almost put things in other spots but catch myself and try to laugh it off,if i can. Some days, its very annoying. I have tried to put the coffee pot in the broom cupboard or the fridge, or the milk in the cereal cupboard, after using each of them. I get confused on the steps, I’m taking in my routine?… I guess… everything is in close range to each other,(coffee pot on counter, fridge next to it, broom closet next to fridge), etc. so i guess that’s why it’s an easy mistake. As for talking when in Fibro Fog… haha… my words come out backwards..(like: the last word in the sentence is first) or…i can’t think of a word i’m trying to say! So, I have to say, “I’ll get back with you on that” or “wait a minute, i know what it is”. BUT…I have learned most of the time, to laugh it off ! And walking is a problem then too! Very stumbly and weaving, lose balance!I know it’s part of it. Besides this… the hardest thing I deal with…is someone bumping into a chair im seated in or bumping my bed! I cannot stand it…it sends me thru the ceiling…i mean, just “really” hurts, even a slight bump! My gr. kids are effected by this the most. I have to tell them whenever they are over about it! It’s very hard for others to understand. And them trying to sit on my lap. That’s painful too but also hurts mine and their feelings,… Mema can’t hold them! Those I would say are probably the worst to me on a daily basis! I was getting a new back brace and my current ARNP…(my Dr. left Feb 22), needed to see me before approving the back brace! In the process, I had to be sure the FMS was on my list? In doing so, she said, “How do you know you have FIBRO”? I replied I’ve been Diag. by four different Dr. and believe me.. I know! She said “Well I have it too and there’s only one way to know” (the tender point test). She proceeded to poke and squeeze me with me of course yelling ” ow,ow ow” and that afternoon after going home and all that pressing and poking me, I hadn’t felt that PAIN,,, in a long time! I hurt for 3 days after she did the “tender point” test! Believe me, it’s not a very tender feeling! Anyway, Im glad you are sharing this info. with people and I like it better here becoz the on-line support group I was in, were really just whiners…I’m sorry, I know we all hurt but I want and need comfort… I really try not to complain…(besides..who would believe you can hurt that much..and in so many places, sometimes all in one day)? So , I decided, for my mental health (and others as well), i only complain about the worst problem of the day..if asked! Or if Im surprised by something, Ive never felt before, I may tell that one! But for the most part, when a person hurts all over and never has a completely pain *free day… you adjust… (lotions, heat, cold, ice, pain meds. muscle relaxers,vitamins,*(MAGNESIUM 800 MG.A DAY, STOPS THE MIGRAINES, I FOUND OUT), NONE…GOING ON 11 MOS…. SO NICE! So, keep adjusting as you need to… take walks, some exercise, Vitamins, and laugh most of it away daily…I watch a lot of comedy movies too! it really helps take your mind off of yourself!

  8. Have had Fibro for 30+years!… and while all of it is horrible, I concur with this!.. the Fibro fog means you can’t function, even when it’s important stuff that is going to cost you a lot of money!… I have insurance issues that I just can’t sort out, and it could cost me my house (as I can’t work out the paperwork issues! fibrofog!!!) and so I am still looking at it on my table after two years after a bad cyclone!
    It is just too confusing, and nobody wants to help, and I am on my own!

    1. Lyn, I’m so sorry to hear that you feel so alone. Chronic illness is very isolating. I wonder if there are any agencies in your area that could help? Maybe if you contact the National Fibromyalgia and Chronic Pain Association they have resources for you? It’s worth a conversation.

  9. I missed this post as well…I would have to say fibro fog for me too!! I am 42 and back in college and oh my, you talked about difficulty trying to remember things for a quiz!! LOL…..It is horrible!!!! But I just keep pushing forward!!!

    1. Kerry – so glad you keep on pushing forward and that’s what’ll get you through. So glad to hear that you’ve become a student again! You go!

  10. How do you choose . There is the migraines which could lead to being in ER . There is the IBS which can cause me to double over in pain .

    1. Eloise – I sure understand how the multitude of symptoms can be frustrating. Oftentimes, it’s the symptom that you happen to be experiencing at the time that bothers you the most!

  11. Hi Sue,

    Life isn’t easy when we face a multitude of challenges daily. Fortunately the power is within us to overcome every obstacle and climb out of the darkness that surrounds us. The obstacles that lie within us are the ones that frighten us the most. It is the fear of what we might find that keeps us stuck in the darkness.

    We have all been blessed with the wisdom we need to overcome the darkness. We can once again be part of a bright future. The life of our dreams can be ours; we just need to love ourselves enough to face our fears.

    Sincerely,
    Kathryn

    1. Kathryn, thanks so much for your comments as they’re very helpful. Transforming my health was definitely a challenge to overcome the darkest time in my life. But, of course, the events that are the most challenging often bring the greatest rewards. Thanks!

  12. My perception is that Fibrofog results from loss of refreshing sleep and precious little time in REM and dreaming. Unrefreshing sleep results from an underlying chronic pain. The type of pain experienced by persons with fibromyalgia is worsened by the reclining positions and sleep is interrupted. In many of the sufferers their sacroiliac joints are hypermobile and they cannot find a comfortable position. As one of my patients exclaimed, “I sleep like a rotisserie chicken”. A reclining posture places high torque forces upon the pelvic girdle. This causes autonomic nervue system functional changes as a result of impingement of the parasympathetic nervous system. It is obvious that the broad spectra of fibromyalgia symptoms are mediated by the parasympathetic. This model explains why an hypermobile pelvic ring can arouse so many different dysfunctions (endometriosis, PMS, post-partum chronic low back pain, IBS, IC, pain with sex). All these functional changes are, in greatest part, caused by impingement of the pre-sacral neural plexus, which lies directly over the ventral surface of the sacroiliac joint.

    Fibrofog is a manifestation of mental function of an human system that has become exhausted because of chronic pain and loss of refreshing sleep. Orthodox neurologists assert, as a group, that chronic sleep loss goes hand-in-hand with onset of depression.

    Laurence Badgley, M.D.

  13. One of the annoying symptoms for me is the IBS. Its not frequent but sometimes its at the worst possible time. The Fibro Fog certainly is right up there for me as well. But I learned to deal with that better than I do the IBS.

    1. Thanks for your input, Wendy! I think a lot of people can relate to your thoughts. I had a terrible time with IBS for many years and found it just awful to live with. Pretty hard to plan LIFE when you can’t even get out of your own bathroom 😉

  14. I had colonoscopy and endocscopy and it was really strange. I had a hiatal hernia but the Gastreo Dr. said it wasn’t there but only found polyps and removed them. After that I have become regular, no IBS! The only thing I now have to take for acid reflux is NEXIUM! And i can now eat the things I had to stop eating, (which was just about EVERYTHING)! Maybe, you have polyps blocking your colon? Worth a try to find out!?

  15. Wow! My daughter sent me this link and I’m very happy that she did…I’ve suffered with full body pain and the fatigue, fibro fog and all the rest of it for over fifty years. I used to think if I would just die it would be all over…did I think of taking my own life? No, not really. Being a Christian I knew that my God would not be very happy with me! After all these years I have taught myself to keep a sense of humor. It helps me get though a lot. Of course, for me, and can’t speak for others of course, my faith and The Lords love truly keeps me going. Along with the rest of you some days you wonder if it’s worth it, it is. A few years ago my doctor found a medication that acrytually works for me! I am so thankful because it was so bad that I was pretty much bedridden. Lyrica is the name of the medication. So that and Norco and Cymbalta have finally helped me to function more than I have in more years than I care to remember. I’m going to be sixty-eight next month and get around better now than I could in my thirties. Another thing that I used to hate and that is when I would go to doctors and I went to many, they would tell me that all of my tests came back normal and they couldn’t find any wrong with me. I would go in there looking like death warmed over and that is all I ever heard. That and “have you ever thought that it might be all in your head?”. Geezzzzzz You all know.
    I’m trying something new, for me anyhow, and that is Protandim. It is suppose to work on the “free radicals” in the brain. I’ve been reading up on this lately and when this product came to my attention, I have to try it? Especially since research is showing that it has actually been all in my head after all. Who knew! Basically we are shortcircuting in area’s of the brain which tell our bodies (our nerves) that we hurt, we can’t think and all of the other horindous

    1. I meant so spell “horrendous”
      cont.
      symtoms we suffer. I can’t recommend this for anyone else, I can only tell you what I am trying.Thank you for letting me “vent”!

    2. Loxi,

      I’m so glad you were referred to this post and to the chatter of these lovely comments. Happy to have you join in! Dealing with chronic conditions – such as fibromyalgia – can be so isolating, so feel free to join in and participate here. We also share information and conversation on the facebook fan page here: http://www.Facebook.com/FibroWHYalgia. I appreciate you letting us know what treatments you’re trying and what is working for you. Happy to hear that you’re finding some good results. I’ve definitely heard of Protandim and know several people who have had very beneficial experiences with it. Because we’re all so different, we often find that what works for one person (in the way of specific medications or supplements) may not work for another. Thanks again!

    3. I am 58 and have felt like I would be willing to not wake up tomorrow more than once. I have not considered taking my life, so no I am not suicidal, but sometimes I am exhausted from fighting this wretched “syndrome”. Fibrofog is just one of the fun list of things we get to deal with. The first time I remember thinking something was wrong with me was when I was 15 and had to run in place for 5 minutes. I was not able to walk for several days due to the muscle spasms. But, I was treated for rheumatic fever as a child due to muscle pains and inability to exercise very long. The odd thing is even today , they cannot find anything wrong with my heart. In 1991, I was diagnosed with this but still have not found the perfect solution to deal with the symptoms.

      Does anyone else deal with burning mouth syndrome?

      1. Donna — thanks for your comments. I bet others can relate to your story. For many of us, it took years and years to find a diagnosis. The heart has to work very hard in a body that is compromised with chronic conditions. I’ve had heart “pain” over the years and for a long time was convinced I had severe heart disease. I did have costochondritis, but even afterward, I still get chest pain when stressed. We all exhibit symptoms in different ways. I’m glad you continue to look for solutions that work for you. I personally, have never dealt with burning mouth syndrome, but perhaps someone else has? If so — please submit a comment!

      2. omg !! I have had problems with my mouth for 10 years !! the pain …tapping needles, burning .. knife cutting pain , feel like some one open the roof of my mouth and pour salt all over it …
        i have been to so many doctors about this (and densit) .. my roof of my mouth was scraped , and still no relief !!!
        thank you !!!! for the comment !!! it explains it all to me !! the suffering I have been going though !!

  16. loss of smell and tatse … the pain never ever goes away .. trying to find a doctor that is kind .. having to drive 3 hours for a new one .. depressed .. can’t sleep …. can;t think ..

  17. Hi Amy,
    Bless your heart. I, along with so many others can relate to you and your suffering from fibromyalgia, fatigue and all of the other symptoms that go with it. My doctor has me on several pain meds and one of them is Lyrica. I have had a lot of success with it along with my other meds. I understand that not everyone can take it because of allergic reactions. Should I run out for reasons that were not my fault, on the third day I’m back in bed because of the pain and have to rely on my other meds to help control the pain, which is still better than nothing.
    I think one of the things that really bothers me is that because most of the time we don’t really look like we are in any kind of pain and that is one of the reasons people who don’t know “us” simply can’t believe we are in such pain.
    Hang in there Amy! (((((((hugs)))))))) Loxi

  18. I hate fatigue the most! It stops me living my life, if I’m in pain I take a pain killer but with fatigue there’s nothing, not that I’m aware of anyway. Fatigue makes me feel old (I’m only 45) and miserable.
    At the moment the fatigue is okay so I’m my normal happy cheerful self! This fibromyalgia won’t beat me! (Well, most of the time anyway)

  19. Fibrfog was my first thought as well. Everything else, I can deal with but when you walked around your whole life knowing you were pretty darn smart and now you could be in the middle of the grocery store and suddenly can’t Remember why you went to the store in the first place. It makes me feel stupid and I hate that.

    1. I can completely relate, Nicole and thanks for joining in with the rest of us here and sharing your feelings. It is extremely frustrating to feel less than what we were in the past. You’re in good company here.

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"True Healing requires a combination of healthy nutrition, healthy body movements, and emotional wellness. This is what I call the Restoration Trio" 
~ Sue Ingebretson