Funky Fibromyalgia Sensory Symptoms

Most of us fibromyalgia folk, and the people acquainted with us, understand that we have pain and fatigue. While really truly understanding the pain and fatigue might still be elusive, generally speaking it is a given. But are people aware of all of the other fun symptoms that seem to go hand in hand with fibro?

Even those of us diagnosed with the syndrome may not really know what to attribute some of our symptoms to. It’s especially difficult when you had certain symptoms prior to developing fibromyalgia or to receiving a diagnosis. Some of us have had other diagnosis, too, that seem to explain the symptoms. But who knows… could the fibromyalgia be causing it now?

My 5 year journey (approaching 6) with this ugly illness has given me a wide variety of experience with ailments. A strange burning sensation that runs down my arms at times, (it’s like someone is drawing a line down my arm with a hot poker!), intolerance of loud noise and very little tolerance of chaos of any kind, forgetfulness, the “fog”, headaches, hot sensations on my face, burning sensations on my ears, all of these funky things can happen (and the list can go on) but some can be explained by an assortment of ailments. From imbalanced hormones to pinched nerves to lumping it all together as fibro, there is no telling where it is all coming from. Add in other issues like PTSD, depression, anxiety and…seriously, who can make sense of this human puzzle?

Well, thank goodness there are people who are trying to figure it all out. I just read an article from the Fibromyalgia Network titled, “Is Sensory Overload Part of Your Fibro?” (I suppose it would simplify things to know that it was.) The article discusses the possibility that in addition to an extra sensitivity to pain, fibromyalgia patients might also have a heightened sensitivity to sensory experiences, which really, makes sense to me. If one part of our neurological system has become extra-sensitive, why wouldn’t all of it?

I am not sure if it is more of a correlative effect versus causative, but there definitely seems to be a relationship. Sensory symptoms listed in the article include: numbness and tingling sensations in extremities, swelling sensations, burning skin, sensitivity to loud sounds, sensitivity to odors, sensitivity to bright lights, and burning eyes. Researchers at the University of Michigan have demonstrated that the pain levels of fibromyalgia are directly tied to these other sensory symptoms. They found that those with more of these kinds of sensory type symptoms experience higher levels of pain.

The article concludes that treatments aimed at buffering these sensory experiences may be beneficial in reducing pain levels. So the research continues…

Whatever the cause of these funky and seemingly unrelated symptoms, I believe every little thing that we as fibromyalgia sufferers can eliminate from our repertoire of pain is one step closer to a more beautiful life. I am interested in learning more about how to lessen the nuisances and dull the pain, how about you? Turns out that my friend Felicia (aka Felicia Fibro) has a blog post that touches on how she deals with a lot of these symptoms herself: Sensitivities. I found it to be a resourceful post and her site is wonderful, go check it out!

What do you think? Do you experience a lot of sensory disturbances and symptoms? Do you think it is directly linked to fibromyalgia or to a completely separate condition?

9 thoughts on “Funky Fibromyalgia Sensory Symptoms

  1. I certainly have the common sensitivity issues that come along with fibromyalgia. I’m feel that once the medical community fully understands what causes fibromyalgia and how it works that they will also understand the puzzling symptoms and many of the overlapping conditions. Until then we just do what we can to manage them. That is why I try to write about as many of the tricks and tips that I figure out along the way.

    • I have to say I have my tips too… my skin was so ultra sensitive- could barely stand my nightwear until I found this new fabric called goodnighties. It has negative ions in it and I am now able to rest and sleep waaay better. If I get a good night’s sleep then my pain cycles are more controled and I have much better days. I have been trying to tell others in various FM groups cuz others need to know about this discovery. I give it 5 stars …and I haven’t liked anything in years since being diagnosed in ’03

  2. I always put off my sound and light sensitivities as a part of my Intracranial Hypertension so it’s nice to know other fibro people experience it too. I was just having a conversation with my mom and it seemed like she was almost screaming even though we were in a room with hardly any other noise. I was beginning to think she needs a hearing test but maybe it’s just my extra sensitive ears. Sometimes when I use my iPod, I have to take the earbuds out because even at the lowest possible setting, it hurts my ears. I spend most of my time in a room with black-out curtains and it seems too bright. And I am definitely overly sensitive to smells, though that comes and goes sometimes. I remember a few years ago, I was out to dinner the night before my second sinus surgery and someone 2 or 3 tables away squeezed a lemon slice and it seemed like the lemon was right under my nose. I joked about having “super Spidey smelling”. It’s really great to know I’m not alone in these strange sensations.

  3. Boy, do I identify with all these symptoms and more. Not only the pain of fibro, I have leftover pain from a bout with Shingles.
    Daily I never know how the cards are gonna be dealt. I go to bed with thingys crawling on me, well, I mean my limbs and body tingle and throb and feels like someone is trying to rip off both my arms. It feels like I am not sure that I wake up with the same person, when I sleep, that is. When the spasm act up, oh my feels like someone grabbed a hold of my muscles and is playing tug o war with them! I am so *allergic* so to speak to flourescent lights, bright lights of any kind, need soft or no light.
    Just all over my body feels like there are things crawling all over me and my head too. See if that don’t make you plum buggy when you wash your hair or get it fixed, you think that will take care of the *bugs* but of course with this funky disease, It Does Not! I can rub and rub on my legs and arms and I can’t seem to get warm. I go do I have to sleep with these cold hands under the cover, that ain’t fair, they make me cold when I accidentally touch my hands to my face or neck. I am not able to walk well anymore that seems to be hazardous to my health, but when I walk it is not fast at all.
    Oh great the fog has rolled in don’t you hear the fog horns going off, auga auga auga i>i>i>
    Alright fibro I have the floor if you don’t mind, I was saying, I lose my balance very easily. I have something I call rickosheyin pain, like it will jump from one part of my body to the other. It bounces back and forth to and fro like a rick o shay in bullet! My back is constantly screaming at me, hey girly do something, we are not doing well at all down here! We need a good massage or something, you have to do something even if you have to take up robbin banks to pay for it! Don’t you remember you got us going at one time with accupuncture! So, I said all that to say this:My body is constantly fighting with me on some level or the other. When I try to write or type, the right arm seizes up on me and I have to stop and breathe! Of course now if Chronic Fatigue is on the guest list for that day, I have trouble breathing. So there’s that, plus I get face pain that is strange, feels like someone tappin on my nerves! My skin seems to be ultra or super sensitive to touch. One dr scratched me one time with a pair of scissors, not hard, just scratched me and within no time, I broke out in whelps! Oh goody, I really wanted to go home with battle scars on me! lol Oh my goodness, I fear that I have overshared, I should probably go! My hugs, love and prayers to all my #spoon sisters and brothers and all who suffer at the hand of any illness! We are in this together! I am here for you if you need me! I can help some cause I was there when it happened,so I really ought to know! : ) I forgot about the chemical sensitivities, oops maybe another post! gentle hugs, Ellen

  4. Thank you for sharing your story. You are beautiful inside and out. It has been so wonderful to find so many people who share a common thread.
    I belong to a Support Group in Dallas, but it has 400 plus members. I think it is quite large to really handle. And most people are not involved.
    In juts a few days, I have found so many great woman who suffer from chronic illness. I have had fibro for about 12 years. It does affect relationships, and everything else in our lives.
    I remarried 13 years ago, and my husband is supportive, but he really does not understand my illness completely. He claims I sleep too much etc…
    I don’t think anyone understands.

    I wish you all the best, and many gentle hugs.

    • Thank you so much for sharing with me and for your very kind words… (((hugs)))
      400 people is very large for a support group, I would think it might prove helpful to finder a smaller group, but wow, that is amazing that 400 people have come together. Perhaps within that group a smaller group can be formed and found.

      It is so wonderful to know others who get it, even if it is online. It means the world to me to have the support and understanding of others.
      Thank you for reading and commenting!
      Best wishes,
      Amy

  5. I was diagnosed with fibro 2yrs ago. It’s progressed now to where I also joke about spidey senses. I have days like today where every one of my senses are way dramatic. I can’t stand to be touched in any way including wearing clothes. My skin/crawls itches relentlessly. My nose stays tender because of the constant itching. My eyes itch and hurt. Sensitivity to sound is made worse because I have ptsd so the reaction to sound is a double whammy for me. It’s recently in my right hip joint. Goes all the way down to my foot. In back it causes psyiotica down my left side. Today it’s sensory (omg) and just under shoulder blades up to neck and all the way across. Very cool to see similar stories and know I’m not alone in this.

  6. I was diagnosed with fibro about 7 mo ago. And in the short period what a strange trip it’s been. I feel as im going nuts!! I have this odd thing that happens once in a while I’d say in the 7mo I’ve had it happen maybe five times an it lasts for a few days to a week. I’ve been calling it sensory overload but reading the description it’s different help… I have ringing in my ears and my body feels shaky and electified like when. I walk the feeling of my foot touching the floor makes my body feel unstable and the feeling travels up my body to my head making that same feeling in my head I know this sounds crazy but it’s almost like people should be able to SEE this t so strong of a feeling. So far this has been going on for 3 days. I work in a pharmacy and have spoken with my pharmacist he believes it’s related to fibro. Help am I losing my mind now on top of all this????

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