Fibromyalgia and Dizziness: My Experiences

Fibromyalgia and Dizziness: My Experiences

Through the Fog

I personally have had bouts of vertigo, loss of balance, and dizziness throughout my journey with fibromyalgia. It can be especially challenging for me when I have appointments. For example, when I go to the dentist, I have them lower and raise the chair slowly and not lower it flat. Even still, I have to hold on to the counter for a minute once I get up. When I go to the hairdresser, I wash my hair at home first, then she just wets it as necessary while she trims it. Laying back to get my hair shampooed will definitely trigger vertigo for me.

Vertigo is the sensation of the room spinning or tilting, and is often accompanied by nausea. Only one episode of vertigo was actually bad enough to make me vomit. It can be caused by an inner ear imbalance. I typically experience it when laying on one side but not the other. I never seem to go more than a month or so before it’s back again. I’ve had the Epley Maneuver done and that relief lasted about six months. It was performed in an ENT office (ear, nose, throat). I have what is referred to as BPPV (benign paroxysmal positional vertigo). I can’t watch spinning things or fast-moving objects without feeling nauseous and closing my eyes.

I have experienced light-headedness accompanied by nausea, so unpleasant. That happens mostly when my IBS flares. Also, if I stand too quickly, I will feel momentarily light-headed. I have never fainted, but have felt close to that on numerous occasions. No fun!

Dizziness can also cause us to feel off-balance. I’ve fallen a few times, so now I’m good at stopping and holding onto something solid, or sitting until it passes. I wonder if we are more sensitive to these symptoms because of fibromyalgia — do you experience this?

Unsteadiness is a type of dizziness that makes you feel unbalanced. When I feel this kind of dizziness, I feel like I could just topple over and fall down. It’s interesting that it appears to most often affect older people rather than the young. I can attest to that in my own life.

You could think of it like this: When you get off a roller coaster that has a lot of upside-down loops, your brain is attempting to catch up to your body being away from the ride. It causes unsteadiness and potentially nausea. So unpleasant!

Some common causes of dizziness or vertigo:

  • After you have been standing for a lengthy period of time
  • When you go from sitting to standing
  • Climbing up the stairs
  • When you are in a warm environment
  • After you have been exercising
  • After you have eaten a heavy meal
  • After you have experienced a lot of emotional stress
  • Some medications you take

Feel free to share your experiences in the comments section.

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia. 

52 comments

  1. Kitty Scalzo says:

    Robin
    I am experiencing all of that and it is getting worse as I age. Had fibro all my life but intensified after bad viral infection and emotional crisis in late 1979. I feel most of these symptoms including swollen head feeling from base of head/neck connection pressure. Only relief overall for me has been Alpha wave biofeedback which gave me back restorative sleep which I attribute to exacerbating all other symptoms. Can no longer afford to go for treatments and cannot achieve results without machine. Thanks for all you do.

      • Kitty Scalzo says:

        Robin. Thank you for your kind and quick reply. I wondered if you have heard of Dr Lucinda Bateman’s work on limbic encephalitis? She suggests we perform the Rhomberg test on ourself which I of course was positive for with fibro and after 4 whiplashes which many fibro patients have had. Wow! For an English major I do write in run on sentences! I have a wonderful chiropractor who helps with the pressure in my head. She says she can cure fibro by retraining the neck muscles/bones to reset without the lessened blood flow due to small opening. Of course, like the biofeedback, it takes thousands of dollars to have enough sessions to make a difference.
        Also Dr Bateman’s clinic sent me a website on a clinical trial on RINCE through the “neuropoint” device.
        The trouble with all the tests and studies for me is that they all focus on pain as the main symptom. Lack of restorative sleep is number one for me with the pain coming from that. Number two is the head pressure and all the dizziness weakness etc you described. When I did the Alpha wave biofeedback I felt normal and got back to work full time. Unfortunately I did not keep going and burned out after 3 years. That was 1990. Sorry. I could write a book.

    • Alysha says:

      Hi Kitty, I’ve just read your comment and am interested to hear more about your ‘swollen head’ symptom. I have that feeling when I stand up, I feel as though all of my blood is racing to my head and as though my eyes are being squeezed out. It’s really quite painful too. It only lasts a few seconds but is very unpleasant. Robin have you heard of this and is it connected to vertigo do you think?

      • Kitty Scalzo says:

        Alysha
        I don’t know what else I can say to describe my head. I feel like the whole lining of my skull is swollen and making my head too full. Aspirin seems to help so I take two Excedrin in the AM after I take my 800 ibuprofen for the swelling in the rest of my body. The head thing is intermittent but has been solidly swollen for the last two months. Awful. You feel like the blood is racing to your head. I feel like the blood is draining from my head and my blood pressure has dropped into my shoes when I stand up. I have never fainted completely but I usually have to stand still till the room stops spinning and I can walk without walking into the wall. I usually just take it all for granted that every moment will bring unexpected adventures. Sorry this doesn’t help except that you are not alone.

  2. Redd says:

    I’ve had vertigo and tinnitus for years. I just attributed my clumsiness to my being clumsy from the git go. Thanks for reminding me it maybe from this disease.

    • Celia Foster says:

      Redd, I too have vertogo and tinnitus. My doctor taught me the Eplay Maneuovers and they help with vertogo right away. I do however have diiferent bouts of dizziness. Lately particularly when I am walking up or down the stairs I get the feeling that if I put a foot down I will fall, almost as if my legs and feet don’t belong to me! I have gotten better at catching myself before I fall! I also seem to trip over nothing! A dear friend of mine who also has fibro calls it tripping over the invisible cat!

      • Kitty says:

        Celia
        I have the same feeling with my feet. This is a relatively new symptom for me and the dizziness is worse along with the weird pressure in my head. Oh well just part of daily fibro living. Nice to share.

    • Terra Tisher says:

      I’ve had fibromyalgia and vertigo since 1997. I’ve fallen more times than I can count. I fell in December and broke my ankle. Recovery is slow and painful. When walking I can only go a few steps without holding on to something. I use a walker outside which helps. My vertigo doesn’t come and go it’s always there. I had brain surgery to correct an Arnold chairi malformation. I was so hoping that it would get rid of my vertigo, it didn’t help. I still have to be very careful. I haven’t been able to find a new doctor who specializes in fibromyalgia pain. The pain is getting worse as the weather changes. I am frustrated that no one can help. God Bless.

  3. Robyn says:

    Ironic that I stumbled onto this today, since I’m recovering from an inner ear procedure to treat vertigo, and I also have fibromyalgia. The nurse anesthetist asked if I had any other conditions. I said, “Fibromyalgia, but it’s not bothering me much lately.” Fifteen minutes later, I woke up from surgery to hear this same guy state twice to the other staff that he didn’t believe in fibromyalgia. Instead of telling them I’m awake now, I said, “Well, I believe in fibromyalgia!”

    The physician performed a labyrinthotomy in my left inner ear. He made a small incision and put in antiviral drops. I’ve had this procedure done on the same ear before and it worked for three years.

  4. Danette says:

    I’ve had fibromyalgia and IBS all my life and all the symptoms listed above of dizziness & vertigo. However, I believe mine is caused by Bradycardia (low heart rate) and extremely low blood pressure. I’ve gone for a number of heart tests and I’m seeing the cardiologist next month so I’ll find out if anything can be done. I’m 33 btw, and have had the dizziness all my life, even fainted once at 16. So it doesn’t always just afflict those in their later years.

    • Terra Tisher says:

      I’ve had fibromyalgia and vertigo since 1997. I’ve fallen more times than I can count. I fell in December and broke my ankle. Recovery is slow and painful. When walking I can only go a few steps without holding on to something. I use a walker outside which helps. My vertigo doesn’t come and go it’s always there. I had brain surgery to correct an Arnold chairi malformation. I was so hoping that it would get rid of my vertigo, it didn’t help. I still have to be very careful. I haven’t been able to find a new doctor who specializes in fibromyalgia pain. The pain is getting worse as the weather changes. I am frustrated that no one can help. My blood pressure is very low, I was hospitalized because of how low it
      Was. My fibromyalgia has so many strange symptoms! 🙂

      • Robin Dix says:

        Terra, I had my first episode of vertigo in 1988, so scary! Do you have a walking boot you can use? Do you have a cardiologist? For fibro I recommend a rheumatologist or neurologist. Keep me posted on how you’re doing ????

  5. Amy says:

    I have fibro and the dizziness and vertigo that goes along with it (it at times has been severe enough that I could not stand upright — but thankfully that’s pretty rare). This may sound counterintuitive, but I’m also am a ballroom/latin dancer, and I have no doubt that dancing has improved my balance and dizziness symptoms. Don’t get me wrong, some days I have to adjust the type and amount of dancing I do (or just take the day off), and I’ve learned to anticipate when it’s just too much, but I know overall there has been quite a benefit. I’ve read articles that talk about how dancing can improve balance and dizziness, and it’s definitely the case for me. I know dancing isn’t for everyone, and that I’m lucky that I found this hobby and have an amazing partner who works with me to adjust what we do based on what symptoms are most prevalent each day. Just a thought for people who are looking for a fun way to exercise and maybe ease up some other symptoms as well.

    • Jacky says:

      Thank you for you advice at the moment I am suffering with two broken feet I have one bone broken in my left foot and 4 small bones broken in my right foot back at the hospital at the end of October but I think I would like to take up dancing and if there is any chance it would help my dizziness and Virgo I will try anything can I ask what sort of dancing you do and would any dancing help x

  6. I had never heard of this being associated with fibro. I have tinnitus and low blood pressure and thought it was a side effect from the migraines I suffer. Does anyone get fluttery heart palpitations too? Fibro in the UK is treated like hyperchodria..doctors treat you like second class citizens and dole out pills like drug dealers.

    • Denise Bault says:

      I too get the fluttery heart palpitations. Figured it was either another “gift” of fibromyalgia and /or a heart problem that would finally alleviate me of all my symptoms! Shame on the docs in the UK. I always said I would never wish it on anyone. Starting to rethink that. Perhaps just a month or two for those who don’t believe or care????? God Bless and keep on keepin’ on!

      • Alysha says:

        Yes I’ve had palpitations all my life. They were increasing in frequency and duration about 2 years ago and so doc suggested a holter monitor which determined that I have SVT. I’m now on Noten and they have reduced to almost none.

    • SO SORRY TO HEAR THIS STEPHANIE. I WAS DIAGNOSED AT THE AGE OF NINE WITH FIBROSITIS 1957 IN THE UK – POLIO WAS RAMPANT SO CHECKED BY TWO DOCTORS. I HAD ACHES AND PAINS AND JUST HAD TO GET ON WITH IT, WHEN I REACHED MY 50/60 I FOUND I COULD HARDLY WALK/MOVE ARMS. AFTER RULING EVERYTHING OUT MY AUSTRALIAN DOCTOR SAID I THINK IT IS FIBROMYALGIA. NEVER HEARD OF IT I SAID – THEY USED TO CALL IT FIBROSITIS SAID MY DOC. OH I HAD THAT WHEN I WAS A KID . HE SAID YOU STILL HAVE IT. HAVING PEOPLE UNDERSTAND AND SUPPORT YOU IS SO VITAL. WE HAVE ENOUGH TO PUT UP WITH – THE UNEDUCATED IGNORANCE MAKES IT HARDER. SENDING YOU GENTLE HUGS CAROL XXX

  7. Lyndsey says:

    Myself my mum and daughter all have fibromyalgia, my mum sufferers horrendously with vertigo to the extent of vomiting and being bed ridden (sitting up of course) until it passes enough to stand up , myself I suffer with dizziness wobbly walks etc and my daughter suffers with it and falls down , so without going into great detail all three generations with forms of vertigo and all three with fibromyalgia

    • Dawn says:

      Not diagnosed yet but I’m 98.9 percent sure I have fibro. My mother has recently been rediagnosed with fibro after nearly 50 years as MS (never has brain lesions). My symptoms are near identical to hers but only just started the last couple of years for me. Although I had a small period in my early twenties I thought I had MA too. I think June has been triggered by change of life. Dizziness I would say was my first symptom. Severe upper body/neck pain followed. Mine is an imbalanced or a faint like you’re going to just fall over feeling

  8. Susan Blalock says:

    Robin,
    I was interested in your article as I too have fibro, vertigo, arrhythmia, and migraines. It is interesting to see that others have the same connections with symptoms that I never thought were related in any way. I have had the vertigo for the last 5 years ( the Epley is my friend) and fibro for many years. I am 62 years old and the more I learn it helps connect the dots.

  9. Betty Beck says:

    I started experiencing dizziness at the age of 23 right after my second child was born. I was told I had an inner ear infection and was put on antibiotics which didn’t work. Then I was told it was from my allergies and told to take the decongestant Sudafed, which seemed to help some. I wasn’t diagnosed with Fibro until age 49 and I still have bouts of dizziness without a diagnosis or treatment.

  10. Alysha says:

    Hi Robin, I’ve had vertigo for number of years. Most recent attack came completely out of the blue as I bent over to put my pj’ s on. I would have fallen if the wall wasn’t there. I then spent the following 24 hours vomiting and tnothe following couple of days not being able to move my head without the room spinning out of control. Nasty stuff. My sister has menier’s disease and she feels the same way with her attacks. I wrote about it on my blog if you’re interested in reading it. Thanks so much for sharing this.

  11. Joel Vinkle says:

    I think that something else that is really important is that low blood volume can cause dizziness as well. This is even more important when we realize that in many cases people with M.E./CFS/Fibro/MS/Lymes disease all experience dizziness and all suffer from dehydrating very easily. Some people don’t realize that the kidney is not only a filtration system but also a pump that keeps our blood volume where it needs to be. If our kidney’s are not doing this the way they should our blood volume will fluctuate. Some people will drink sports drinks to increase the blood volume but you can also get natural drinks that don’t have all the sugar but still have the necessary electolytes that bind to the water molecules and resist passing through the kidneys therefore increasing your blood volume and reducing dizziness.

    • Yvonne says:

      Hi,
      My name is Yvonne. I have had fibro for years. I just had parathyroid and thyroid surgery. All of my parathyroid were enlarged. They took 3 and left one in my chest. I have been clumsy all my life but I passed completely out Thursday. Went to ER but of course they couldn’t find anything except TSH 0.01, my T3 and T4 were high. No one believes me when I say fibro. The nurses at ER put arthritis down on my chart instead of fibro. So frustrated, shaky, hurting and no doctor will actually listen to me and believe me. Any suggestions would be greatly appreciated.

      • Robin Dix says:

        Yvonne, have you seen a rheumatologist to get a diagnosis? It helps to get it in your medical records. Your TSH seems low, at least compared to mine. If you have to go to ER in the future, ask to see a rheumatologist.

  12. MARGARET BYRNE says:

    Very interesting! I had a virus give me Labyrinthitis in 2003. Was misdiagnosed for over one year by ENT. One year of full out Vertigo, one year of throwing up 24/7. I couldn’t work. Finally got into a Neuro-Otolaryngologist in Dallas. By then, the virus had left a lesion on my 8th Cranial Nerve-permanent…But he continued to insist I see a Rheumatologist…I did and was diagnosed with Fibromyalgia at the same time! I, like most, had been to numerous doctors, with numerous complaints, numerous times prior to diagnosis with Fibromyalgia. Crazy, to me, it was the Neuro-Otolaryngologist that (A) noticed my responses to normal touch, my unbelievable fatigue, insomnia, etc. and (B) had the education to diagnose my ‘undiagnosable’ inner ear issues. Not counting the 7 broken bones during that one year, yes 7!

  13. Jean says:

    It’s interesting to hear so many of u with these various symptoms that I have ,and have some sense made of the way it feels to have no one quite understand.I had two serious bouts last year ,of what was diagnosed as vertigo while travelling away from home ,I had to get ambulance as I had never experienced anything like it and I was worried ,the symptoms could have been a stroke.i rested with medications for few days till we continued our journey.eventually at home my doc recommended I see ear nose and throat specialist who performed the Eleys manouvoure it stopped the dreadful spinning every night on laying down and every time I turned over,I wasn’t getting decent sleep.I was diagnosed with persitional vertigo .ive had tinnitus as long as I can remember -thought everyone had noises in their head????!
    It’s great to have had this resolved so I can lay down-not sure if it will need to b done again in future here’s hoping.
    I have never had ear problems in my life,it does seem like viruses can trigger this vertigo as suggested by hospital in my husbands case ,-sudden hospitalisation this year while he was sitting still watching tv!It was very scary .
    I still feel out of balance and have that horrible feeling of pressure in head and eyes,and some days I’m so tired I just couldn’t get out of bed if the house was on fire????!
    I think the hardest thing is one not knowing how each day your going to b ,and trying to explain to people what fm is all about.So glad to find personal experiences here ,hope that ‘exchanging notes’helps others along the way.
    I’m nor really sure if the symptoms I have are mostly fm or vertigo or both all I know is it has drastically changed my quality of life,I was the energetic mum and grandma(I’m 72)who now needs others help more-(I’m too independent for my own good )but will try to think positive and meditate more which I’m sure can help.good luck to all fellow sufferers hope u all get some help from sharing our stories,at least it helps to feel your not alone love to u all.

    • Kitty Scalzo says:

      Jean
      I love your post. I could have written it! It’s like living in the circus. Every day has it’s own three rings with unknown things in them. I find a positive attitude helps more than anything. I’m positive I would love to be my old self but this new one is much wiser and more patient with others.
      Thanks for sharing.

  14. Milagros Matias says:

    Hi, my name is Millie am 39 years old and was diagnosed with Fibromyalgia and chronic migraines early 2013. Am a mother of 3 young boys which having Fibromyalgia makes it difficult for me to full enjoy their childhood to the fullest. Having dizzy spells and nausea makes very difficult for us to leave the house due to the fear of a driving accident, or even fainting in front of them. Because of fibromyalgia my boys have had to endure lots of heartaches of their own and it breaks my heart to see how much they have to give up because am unable to do certain things with them.

    • Robin Dix says:

      Millie, just make memories with them at home. They will grow up to be much more compassionate than most. Having you with your limitations as their mom is better than not having you. ?

      • Nancy Mantyla says:

        Your kids are lucky to have you at home. My kids are 16 and I tore my hip 6 years ago and had 3 surgeries and was then diagnosed with fibro. Life hasn’t been the same since, but the kids have seen me do the best I could each and every day. You can be there for your kids every day and they know that you love them and even on the days when you are on the couch, just make sure you tell them how much you love them and give them a smile and a soft hug when possible. It does get better when we accept where we are and decide to enjoy each day as it is, and as corny as it sounds….this is true. It took me a long time to learn it and I hope that I can help someone learn it sooner than I did because it makes it so much easier. Best wishes always:)

  15. Chris says:

    Reading all of these posts provide a sense of relief that it’s not all in my head. I am 35 and have been dealing with chronic daily migraines for the past 12 years, heart palpitations since I was 13 and for the past 10 years my body has continued to hurt more and more, I feel twice my age. Bouts of dizziness are almost a daily occurrence, and depression has just taken over as I feel there is little hope. My family doctor has always had a one issue rule, so I would go in and explain what was worse on that day, get treatment and move on. I have just started to see a Rheumatologist who took the time to listen to all of my health concerns (I have been trained to always talk about one thing, it was so weird to talk about everything). She has diagnosed me with Fibro. The more research I do the more I see how my ailments are connected, and I need to start making the choices of how I want to continue to live. My work and home life have suffered so much because I don’t have the energy for both. These blogs and personal experiences I have been coming across provide so much positive reinforcement, thank you for sharing!!!

    • Robin Dix says:

      Chris, although I feel bad that you are suffering through all this, I’m thankful you found a good rheumatologist and that you find these columns helpful! ??

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