Fibromyalgia and ear, dizziness and vertigo problems

“The ear is the avenue to the heart”, Voltaire

Just as I thought I had experienced everything unusual  with regard to this annoying, frustrating, challenging dis-ease, fibromyalgia, I developed another aggravating symptom- VERTIGO! It all began one month ago,  at night, turning over in bed, the room began spinning. It was very frightening. It lasted about 30 seconds followed by nausea. I had another episode the  next night as well. The morning after the second episode, leaning forward I had a very violent attack which prompted me to go to the doctor.

This vertigo is not to be  confused with dizziness that is brief and passes quickly. Rather, vertigo is experienced as spinning. It was described to me as small calcium crystals lodged in the inner ear and could be encouraged to move through by a positional manoeuvre. The doctor asked me if I was game to try this technique and I agreed. Lying on the table my head was hanging somewhat over the end while he held my head and rotated it for 30 seconds. This manoeuvre is described on the Mayo Clinic site and it is suggested that the person can actually try this at home.

I can attest to it being one of the worst experiences I have had in many years. The doctor did this three times, both sides, and the nausea and dizziness became unbearable, resulting in the need for a nurse to administer a Gravol injection. Thinking about this nausea and dizziness actually makes me ill again. Obviously the manoeuvre did not work.

A few weeks went by and on the advice of friends I made an appointment with a physiotherapist who specializes in vestibular issues, among them vertigo.  An hour and a half visit, testing me, wearing a face mask with wires attached to a computer, he watched my eye movements on the computer (after he had determined which ear and where in the ear the crystals were located- the horizontal part of this convoluted anatomy), then the treatment which was non-nausea inducing and only slight dizziness happened. I had been shaking beforehand  fearing the worst, and relaxed as I knew he knew what he was doing. Miracles of miracles- it worked! I was told to take it easy for the rest of the day and to keep my head still neither looking up nor down for the rest of the day and sleeping on my back that night. The following day I was to test the vertigo and luckily for me this one treatment worked. He had told me that there was an 85% chance it would work first visit and if a second was needed it would rise to a 95% success rate and if a third was needed it would definitely move those crystals along! I smile now remembering waking up without fear of the room spinning.

This physio, Steve, is amazing in that he knows so much about fibro and migraines (which he believes are similar in that they are the result of people who have different ‘brain wiring’ than most others). For that reason he handles fibro patients with great sensitivity and understanding, given our own sensitivities. I am so lucky to have found him.

But to my other ear problems. They crackle, feel like they are submerged in water, feel full, flutter and  I have other odd sensations that come and go. My hearing is not good, particularly on certain days. What is to be done? So little is known about fibromalgia that each and every symptom, although shared by those of us with this condition,  is not properly diagnosed by specialists. I try heating pads to my stiff neck, meditation, exercise, but to no successful end. My chiropractor does give me some degree of relief, but it is temporary. In 2010/01/08 I wrote about Fibromyalgia and Hearing Loss discussing tinnitus, TMJ and the involvement of the 7th cranial nerve. Comments from others encouraged me as I realized I was not alone. It seems this central nervous system of ours invades every avenue of the body bringing about weird symptoms!

Fibromyalgia remains a mystery to me in spite of the lonely journey I have taken to explore this strange land. I am still going up and down various paths searching for the right one. The discovery won’t come in my lifetime.

About Barbara Keddy

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology. I am married, a mother and grandmother living on the east coast of Canada. I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
This entry was posted in dizziness, ear crackling, ear pressure, Fibromyalgia, mayo clinic, positional manoeuvre, tinnitus, TMJ, vertigo. Bookmark the permalink.

86 Responses to Fibromyalgia and ear, dizziness and vertigo problems

  1. barbara says:

    I have fibro and I can relate to alot of what you say. as for my vertigo I was told I have menieres disease of the ears long long before I was ever diagnosed with fibromyalgia. I wonder if you have two conditions or if like you say it’s related to fibro, anyways thanks for sharing.. it was very helpful and food for thought.

  2. Thanks Barbara. I hope I don’t have Meniere’s but from what I understand the vertigo attacks last for about 20 minutes while with the crystals it is less than 30 seconds (my experience). However, I am having further ear tests this month so should have more definite answers (is that really possible with fibro?).
    Regards,
    Barbara

  3. Christie S says:

    I just came across your page while looking for other information. I too suffer from Fibromyalgia. It happened a couple months ago that I got extremely dizzy, nauseous, and my equilibrium was out of sorts. I though it was just the flu or a virus because it ran it’s course and was gone after 2-3 days. Well it just returned yesterday morning. I woke up and the room was spinning. It eased up after a while but didn’t completely go away. And then it did it agin this morning. So I’m glad I happened to come across this site tonight and now I know what’s causing it and I’m not the only one. Thanks for sharing!!

    Stay strong and as healthy as you can.
    -Christie

  4. Dear Christie:
    This vertigo is not necessarily caused by fibromyalgia, in fact it sounds more like calcium deposits in your inner ear which can be cured! See a physiotherapist who is a specialist in the positioning manoeuvre and it will no doubt be gone after even one treatment but certainly after 2 or 3 if it is calcium deposits!
    Thank you for your comments and you too stay strong!
    Barbara

  5. Karen Keddy says:

    Several years ago, I had numerous episodes of the ‘calcium crystals’. It would happen when I would roll over in bed, or when I went to get up out of bed, I would feel like I was going to fall out of bed (it is a very dramatic feeling that would cause me a lot of anxiety every time it happened). However, the spinning feeling does not last very long (as you said – Barbara). I ended up getting a couple treatments from my physiotherapist and luckily I have not had an episode in years! Often it would go away after only one treatment, but as I said – I had numerous episodes over the years. Here is an informative website: http://www.dizziness-and-balance.com/disorders/bppv/bppv.html
    Karen

  6. Thanks karen, vertigo is nerve wracking to say the least. I now have hang over from it which means my brain has not adjusted to ‘normal’ , but I am hoping it won’t come back. I really appreciate your comments. I have more hope now that it won’t come back!
    Regards,
    Barb

  7. Teresa says:

    Hi I have fibro , for the last five days I’ve been very dizzy and the rining in my ears won’t stop , nfeel full in my head and a burning feeling as well, I had that for 2 days then the migraines came alone with it I had all of the other oh and feeling so sick through it all my doc said it is my inner ear but I’m just scared I don’t know anybody else have this my mother has Meniers

  8. Please do check it out with your doctor and if you have access to a physiotherapist who is an expert in vestibular issues I would book a visit there too.
    This dizziness is always frightening but you should find out if it is vertigo in which case the room spins, but it only lasts for less than a minute…different than dizziness itself. Take good care and have it thoroughly checked out, Teresa,
    Best wishes,
    Barbara

  9. Sandra says:

    When you don’t post I worry about you, Dr. Keddy. But when you kindly reply to comments which come in later than the original post, I can know you are still out there, keeping on. I read your book a few years ago and it was a great help-the first book to deal with fibro in such personal depth. Thank you for your work in this area.

  10. Dear Sandra:
    Your kind thoughts made me rather weepy! No one has expressed concern for me (nor should it be expected!) if I don’t write. The past two years have been very difficult. I had a heart attack, my mother died, then I hurt my hip on the tread mill by overdoing it, followed by two episodes of vertigo! I am doing well with my heart issues. I just found out I don’t need a hip replacement. The vertigo is finished (hopefully forever, but who knows!?) and while I am still grieving for my mother I believe that will continue forever.
    As for the fibromyalgia I have begun to accept that it will not fizzle out as I age but take on new twists and turns. The hearing loss that began early in my 40s gradually increases. I have begun to realize that this too is a fibro thing! It seems every system is eventually compromised with this nasty syndrome.
    Mindfulness Meditation is the only thing that has helped me while I was unable to walk much because of my hip in the spring and summer. I am trying to live in the moment. OOPS! This is turning into an ‘all about me’ response. I’m on a roll now, haha!
    The reason I have run out of ideas is that after 112 blogs I am beginning to repeat myself and am searching for new topics. The issue of overmedicating is one I am becoming passionate about given I was only on Synthyroid and Gabapentin until my heart attack. Now I am taking 5 meds and have just decided to give up the Gabapentin, maybe even the statin. I believe that those of us with fibro are very sensitive to medications and the comments I receive about all the meds that we are on is frightening to me!
    I did not write during the summer as I was grappling with vertigo. I was a person in the early days to subscribe to Face Book for many years but decided to come off of it as it is too time consuming to spend so much time with social media- it is not good for a fibro brain:-)
    So, in addition to the comments I respond to regularly on this web site and writing and consulting with students about other topics I have been lax in writing new blogs. You have spurred me on.
    I did not intend to write such a long response to you but this is to let you know how much I appreciated your concern.
    Kind regards,
    Barbara

  11. Teresa says:

    Wish I could buy your books

  12. Teresa says:

    I’m so sorry for your loss. Hope you’re doing ok. I’m at the moment going through a horrible time. My grandmother has dementia and I’m doing this alone but I’m getting there. Best of luck and am thinking of you xxxx

  13. I only have written the one but you can order it . See the instructions at the tope of this page.
    Regards,
    Barbara

  14. Dear Teresa:
    Thank you so much for your kind thoughts. Caring for someone with dementia is very difficult. I too care for my parents one of whom died last year and the other two years before that. It isn’t easy. We are caregivers and caregivers are subject to so much caregiving strain. This is a typical scenario for fibromyalgia sufferers.
    Take good care of yourself! Your nervous system is already on overload.
    Kind regards,
    Barbara

  15. Cindy says:

    I was diagnosed with Fibro in July after months of testing, specialists, mri’s, and anxiety over the unknown. What a pleasant surprise to find this blog. I have been dealing with intermittent dizziness for the past couple of months. At first, I thought it was related to being on gabapentin, but after decreasing to every other day, and then trying name brand, and still experiencing the occasional dizziness, I stopped the medication. Overall I feel better, but I still experience days where I am off balance. And for whatever reason, it seems to be the worst on Sundays and Mondays? After reading this post, however, it makes me wonder if the dizziness was even gaba related, since it didn’t get bad until after I was on it for a month. Thanks for sharing your story!

  16. Cindy, I can relate to your comments. The nervous system is so badly affected by this constant hyper-arousal that all our systems begin acting in an unusual way. Check out from your doctor or a vestibular physiotherapist the issues related to your dizzy episodes. I have reached the conclusion that every new symptom is to be regarded as just one more thing to be worried about , but soon will switch to something else that is unusual and that will cause anxiety????
    Nice to hear from you but do check out the dizziness!
    Barbara

  17. Cindy says:

    Thanks Barbara, it does cause a lot of anxiety, which I feel just makes it worse sometimes the more I think about it. When I’m constantly moving or am at work and busy, I really don’t notice it at all. If I don’t sleep well, or I hate to admit, have more drinks than I should on the weekends, is when I pay for it. I do have a recheck scheduled with my rheumy in two weeks, and am curious to see what he says.

  18. Let us know how you make out!

  19. Cindy says:

    Greetings Barbara,
    I had my recheck yesterday. Was surprised to find out this week that my rheumy had retired! They scheduled me with his replacement so it was bittersweet. Sad to be saying bye to the familiarity, but hopeful for a fresh perspective. She was very friendly and attentive, but I feel like she gave me no new options. She mentioned that she’s seen/heard of cases of post-Lyme fibromyalgia (I was diagnosed with hypothyroidism and Lyme disease 5 years ago), but then never discussed if I should go back on doxycycline. She recommended that I get a sleep study to rule out sleep apnea to see if that explains my subpar quality sleep on certain nights. I won’t completely rule it out, but wouldn’t I sleep poorly every night then? And she agreed to hold on trying Lyrica and Cymbalta since I was so sensitive to gabapentin. I don’t know if this is coincidental or not, but I took melatonin last night (I had some leftover from when I worked overnights) and even though I had several glasses of wine with friends and only 6 hours of sleep, I have felt really good today, fibromyalgia-wise! Such a frustrating process. Thanks for reading 🙂 Hope you’re well.

  20. Hi Cindy: There certainly seems to be a connection between hypothyroidism and fibromyalgia. I myself have been hypothyroid since I was 47. I don’t have Lyme disease though. Happy you like your new doc. That is so comforting when one has someone in the health care field that is trustworthy. I have used melatonin for many, many years as I could not get any sleep without it, however, my sleep is not great even with a 5 mg. tablet.
    Take good care,
    Barbara

  21. Skye Jackson says:

    Heyy, I just got diagnosed with fibro & I’ve had vertigo problem’s for about 2 year’s, I’ve had ear specialist & many doctor’s I have seen about it an nothing has been found from it.. my balance is really bad because of it & i also wake up with cold like symptoms. Do u have any ideas to what more I could do about it.??

  22. Carol Ann McClure says:

    So glad I found this website. I’ve had Fibromyalgia for 8 yrs. all the symptoms, husband was caretaker till he died. Husband, 3 sons, sister died within 1 1/2 years. Been doing what was necessary,now have a diagnosis of menire’ disease or positional vertigo. Can’t function alone. Have long term home health care ins. Hope to start using it soon. Great and relevant information on this site. Wondering if it’s just more symptoms of FM. God bless us, everyone, Carol

  23. Dear Carol: I was so sorry to hear of all the deaths in your family in such a short time. This must be a very difficult situation you find yourself in all alone. Certainly vertigo is an added burden. I found that a good physiotherapist, what is called in the US to be a physical therapist, can help with that. Please find one who is trained in inner ear issues as there isn’t any need to suffer where there is help available.
    Very best wishes,
    Barbara

  24. Yes, Skye: Mine was cured with by a physiotherapist who is a vestibular rained physio. he used the computer to find exactly where the crystals were located and was able to perform the manoeuvre to dislodge them! here is help out there!
    Regards,
    Barbara

  25. Deb T says:

    Just came across this site for the first time. I was diagnosed with fibromyalgia at Mayo Clinic in late April. I have been struggling with constant dizziness since the end of March–before I started on any meds for the fibro–so I don’t think it is caused by that. It doesn’t sound like it is vertigo. It is constant except for two weeks ago it was mainly gone for four days but then came raging back even worse. (I did start Amtritiptilyne during that time to help with sleep problems so maybe that could be what is making it worse. It is usually accompanied by burning/itching “tired” eyes. Any advice?

    Deb T.

  26. Dear Deb:
    it isn’t easy to find out what the cause of dizziness could be. I do not give specific advice of course. Certainly talking it over with your pharmacist to see if it could be caused by the Elavil, but since it once left then came back it seems unlikely. Is there a vestibular physiotherapist in your locale? I found one who was extremely helpful. Hopefully your doctor can figure out more about the cause .
    Very best wishes,
    Barbara

  27. Laura Storey says:

    Just came across this site and thought I’d comment. I was diagnosed with fibro last year and have been struggling with dizziness since about 6 months prior to the diagnosis. I had one dramatic vertigo episode nearly 2 years ago which cleared up after 24 hours, none since. I just feel dizzy constantly and it seems to get worse when I watch television or look at my computer for any length of time. I also have severe neck pain and my dizziness increases when I turn my head. I am frustrated! As if the pain weren’t enough! Thanks for letting me “purge”.
    Laura Storey

  28. Dear Laura:
    It seems that dizziness is common with fibromyalgia. Vertigo as well. The two episodes that I had back to back were dreadful but thankfully the physiotherapist with his lovely computer and mask was able to isolate where the crystals were in my ears and fixed it! But, like you I too experience dizziness often. Movies where the screen keeps flashing by constantly will even make me nauseated! I suspect that those of us with neck pain experience this more frequently. Keep in touch,
    Regards,
    Barbara

  29. Nicole says:

    Hi Barbara
    I believe I have had fibromyalgia symptoms since I suffered from spinal meningitis at the age of ten. .I was not diagnosed until 19 years ago when the symptoms got really bad . I have had a few episodes with vertigo over the years and often felt a little dizzy when lifting my head. But last night was the worse case ever. I had bent my head sideways while bending down to pick something up under the patio table. When I got up I had an extreme vertigo attack.. I went into the house to have supper and I kept having spells with short periods of relief in between. Each dizzy spell was accompanied by an adrenaline rush. Then as I was heading to the couch to lie down I had a vertigo spell that caused me to fall. The only reason I can figure out this was so bad was because I had had severe lower back pain and had not moved much. I was also going through a Fibro flare and was feeling dizzy due to several nights of very little sleep. I have never gone for any treatments .

  30. My dear Nicole:
    Get thee to a vestibular physiotherapist who can fix that inner ear vertigo!!! The head manipulation that is done was successful with me and I cringe to think of it as being on-going with you! I can also sympathize with you in regard to a flare up as I too am having one right now. The only things we can do: 1) self talk and tell ourselves this too shall pass while we 2) meditate and 3) move slowly about (do not lie on the sofa all day, but move about as much as you can tolerate).
    Please let me know how you are doing with the vertigo. It is dreadful but there is help!
    Barbara

  31. Nicole says:

    Barbara

    . Thank you for your kind words.. I am happy to say I have not had another Vertigo attack since Thursday evening. But I am not so naive to think it will never happen again so I will be seeking treatment for it. After realizing it can cause me to fall, I worry about having an episode while driving . As for the flare I do keep reminding myself that it will pass and telling myself that there are other people out there in worse situations then I. Even though after many years with Fibro you learn to manage many triggers that can cause a flare we still often experience those triggers that are outside of our control . This Fibro experience is definitely full of surprises…

  32. You are right Nicole. After decades with the demon I am still surprised when something new crops up, yuk!
    B.

  33. Phedre says:

    I am about to try a new therapy tried out in Israel, a hyperbaric oxygen therapy. I’m excited to see if it helps.
    I am now on Charlottes Web hemp oil and while it doesn’t cure all of my aches and pains, it does give me a lot more movement in my hands presently.
    Good luck ladies and gents, hope you find something that works.

  34. Dear Phedre: I have been reading about this hyperbaric therapy; a physician friend read about it. I will be excited to hear from you about the experience. I will try the Charlottes Wed hemp oil…you have given me much food for thought!
    Good luck; keep in touch!
    Barbara

  35. Malinda says:

    I found this article tonight while experiencing another episode of feeling dizzy. Diagnosed with fibro 2/15. I am interested to know if anyone else’s pain and fatigue subsides while they are having their dizzy spells? I find temporary relief from the pain and stiffness while I go through these episodes.

  36. Hello Malinda: I haven’t heard of such an experience. It my case it did not. Have you searched out a physiotherapist(physical therapist ) who specializes in vestibular issues? It probably is a case of you focussing on the dizziness and not the pain! Maybe you are distracted? It seems likely.
    Best wishes,
    Barbara

  37. Heather says:

    I read this and said “YES!” – all of the problems with your ears, the TMJ, all of it – I have had for so long!

    Today I couldn’t finish my homework because (even though I wear glasses) my eyes could NOT focus and reading and/or looking down made me feel so very sick to my stomach. Searched online and BAM! whaddya know, fibro related. It helps so so much to know that I am not alone. thank you for sharing!

  38. Thanks, Heather! Interesting how we all share many of the same symptoms! The problem is missing something else when we blame everything on fibromyalgia:-( Still, we usually can tell if it is something other than fibro since we are so keenly in tune with our bodies.
    Take care,
    Barbara

  39. Lindsey says:

    Hey Barbara, I came across your post last night while I was up with my ears again. I was wondering if you ever found a solution for the fullness and crackling? I have times where after relieving the pressure, fluid just comes running out of my ears. My problem is none of the docs I see know much of anything about fibro, so I’m educating them more then they’re helping me.
    Thank you so much for any advice you give me.

  40. Hi Lindsey:
    My ears continue to plague me. Tried hearing aids but that only made my head feel more full and aggravated me greatly. I don’t have fluid pouring out of my ears like you do, luckily! But the feeling of fullness is often there. The only advice I have is the same I have for almost everything— it is up to us to find ways to calm our central nervous system so that these darn symptoms, of which there are many, can be taught through our brain to let go of the turbulent ways that aggravate us. It is an on-going process and can be exhausting.
    Good luck, and best wishes,
    Barbara

  41. Tina says:

    Hello – I was diagnosed w fibro about 18 years ago and I think the most irritating and hardest symptom that I struggle with is the pain in my ears. It feels like someone is stabbing my ears w a very sharp pencil and certain voice pitches from kids or women put tears in my eyes from the pain. Often I have to plug my ears. I also struggle w people talking behind me normally almost seems like they are whispering right next to my ears in a loud grating voice. Until about 16 years ago I never had ear pain, never had an ear infection and according to the ear Dr my ears look better than most people that visit him. He thinks it’s the fibro causing this pain.

    Reading your article on vertigo I never made the connection between the migraines I started getting about 10 years suddenly. NOR did I think of the vertigo being a fibro issue either. My chiro has helped me immensely although not 100% – he has to adjust that ‘Atlas’ vertebrae at the top of the spine. That may help some of you.

    I would love to hear some suggestions on how to ease my pain & discomfort from my ears – I do craft shows and this month has been terrible. I can’t even talk to friends – everything sounds like Mwa Mwa Mwa from the peanuts show.

  42. Dear Tina: I have yet to hear of someone having such a hard time with this type of pain, but why not? We have pain “all over”! I too get some relief from my chiro and in fact a physio who does cranial work. It seems we are always shoring up one part of our bodies when another place yells at us to pay heed to it!
    I hope you survived the craft show this month! I am suffering from a left hip needing replacement next month so have been tardy repling to the comments. Forgive me.
    Regards,
    Barbara

  43. Barbara Tracey-Larocque says:

    Just found this site while searching for links between BPPV and Fibro. I have tried the ‘Foster Maneuver’ for the first time today; fingers crossed my vertigo eases. I was beset with Fibromyalgia after a whiplash injury over 15 years ago.One lifestyle change that has addressed both issues is Tai Chi. The gentle stretching really helps with circulation issues(I have Raynaud’s) as well as all the weird pain and fatigue that fibro brings. It helps aline my spine alleviating pain in the damaged c5 c6 c7 area. Worth a try! I admit it is a challenge to practice with severe vertigo but I persevere!

  44. Hi Barbara: Tai Chi and Chi Gong are among the best movements there are for fibromyalgia! Doing either with vertigo must be quite a challenge. The Maneuver worked for me so hopefully you have had success! I believe we all eventually develop these joint issues as we age and in particular if accompanied by fibromyalgia! I am having a hip replacement June 23rd and have many troublesome disks in my spine! But then, osteoarthritis is affected by stress- fibromyalgia is a great stressor and the cycle continues.
    Best wishes,
    Barbara

  45. Thank you so much for you comments. I have been running into things for years. Bruising my legs and arms , falling waking up with my head swimming and my legs cramping. I already have fibro and many other things. I did not know virtigo was one more thing you could get with it. Just last week my husband made me start using his old walker because he and my sister in law were afraid that I was going to fall in public. I didnt realize I was that bad. I also have bipolar and emotional problems and just got a dog to train but he is too small for balance. I watched a show on service dogs and a lady even has a wheelchair for when she goes shoping so that she doesnt tire out so bad and I can’t even get my doctor to understand how much I hurt and how much I have to stay in bed. I have osteoarthritis, osteoperosis, hypothyroidism, bulging disk,narowwing of the spine on both ends,migrains and the things listed above. Thank you again for your artical.

  46. Dear Rhonda:
    I am so happy you have begun the journey for a service dog. Its a difficult task having to manipulate a walker on your own. Have you been to a pain clinic? I can appreciate your pain. I am having a hip replacement next week for the arthritis in my hip and along with fibromyalgia living with chronic pain is a challenge.
    Kindest regards,
    Barbara

  47. Nancy says:

    I too found this website by looking up vertigo with FM. And was excited to see its still active! I hope you’re hip surgery went well!! A friend of my DH had hip surgery this week and he only stayed in the hospital overnight! My background is in nursing and things sure we’re different back then!!! I agree with you about FB. I stopped using it too…just couldn’t deal with it anymore. Well, the reason I was looking things up is because 2 days this week, I’ve felt like I was rocking very slowly, like in a rocking chair, but only with my eyes closed. Both times it happened in the morning. Both times it lasted at least 2-3 hours because I closed my eyes to check. I too have been having neck problems. And more headaches than usual. My right ear feels plugged sometimes, like it needs to be cleaned. I always try to look things up before I call the doctor. I live in a rural area and just have a PCP. I actually inform HER about FM and CFS symptoms!! Yeah, I have that too! Anyway, it sounds like my problem is different than yours. I don’t have any spinning. I think I’ll call my PCP and have her check my ears anyway. Again, I hope you’re doing well and will check back to see when you post again!!

  48. Ah, dear Nancy: Please do see a physiotherapist who is qualified to deal with vertigo. I am not surprised that you have a background in nursing. It is all tied together it seems that nurses who are generally highly sensitive persons are prone to fibro.
    Keep in touch and let me know how you make out with the vertigo.
    Regards,
    Barbara

  49. I hope your surgery went well. I’ve heard that most people after a hip replacement feel much better and have less pain walking. Thanks for your answer above. I had actually forgotten I’d read & answered this post – it was very informative and still is. (Darn fibro-fog – a f it’s not in front of menIve forgotten it! Lol)

    I’m going to post this on my FB group natural therapies. Hopefully it will help someone else too.

  50. Thanks for asking about my surgery, Tina. It has been 18 days now and I am slowly recuperating. It is a slow process but I am told I am doing above average. All I read about replacements and fibromyalgia suggest that fibro ‘patients’ do not do well post surgery so I am determined that will not be the case with me. Nonetheless I already knew that this would not be a complete panacea and eliminate all the fibro pains. Hopefully it will improve me walking, though. Thanks for posting the article on your FB group!
    Regards,
    Barbara

  51. Nancy says:

    Barbara, thanks for your advice on seeing a physiotherapist. I will look into that! I’m SOOO glad you’re doing well after your surgery!! Thank you for breaking the mold about fibro patients and surgery. It really bothers me when doctors hear fibromyalgia, they assume complaints of pain aren’t justified or real. I had a podiatrist that I adored who admitted she assumed some of my pain was due to fibro. She still treated me immediately but she admitted that was in the back of her mind when the pain wouldn’t go away. I was diagnosed with Plantar Fasciitis and had a series of steroid injections and oral steroids. Finally after an MRI, I also had a torn tendon. She apologized for not doing the MRI sooner but my insurance wouldn’t have paid for it until those other measures were done anyway. She told me I have a high pain tolerance for having FM. You must too!! Again, I’m glad you’re doing so well!! Thanks for the info!!

  52. You know I really believe most FM people have a high pain tolerance and we’ve just gotten used to it. My pain sits in my lower back and shoulders. Half the time tho I’ll go for several months without even realizing I’m in a flare w little medication (I do not take any prescriptions unless I have strep or something like that) & suddenly it will dawn on me “duh, I’m in a flare!”.

  53. Nancy says:

    Tina Peterson, I think you’re right! I think we get used to having pain and do build up a tolerance. No one knows what it’s like to have chronic pain unless they have it. That’s so true in life for so many things! I don’t mention my pain very often but when I do, I just want to be heard and understood. I want people to believe me. Don’t get me wrong, I’m not looking for pity, I just want to justify my actions. If I don’t do anything all day or sleep all day, I don’t feel good!

  54. Hi Nancy: It has been quite a journey. I wonder if we ever can get a firm grip on our personalities and circumvent all those fears of something aggravating those nerve endings yet again.I think you are right we do have a high tolerance for pain! I was only in hospital for three days but on the second day I didn’t need high doses of pain meds. In fact, I didn’t take any at all! The 60 something RN , my night nurse, asked me why I didn’t take the prescribed pain medications and I said I didn’t need any that day. She called me a “tough old bird”. I burst out laughing, given her own age and said it was a compliment. I have become so used to pain, it is my constant companion. I think we are all tough old or young- old birds given what we experience on a daily basis:)
    Barbara

  55. Yes Tina: We do have a high tolerance for pain! My pain sits on my shoulders too which leads me to believe that is why more women are prone to fibro as we do have the pain of the world on our shoulders! So do sensitive men and children as well. I can hardly bear to watch the news any longer. The chaos in the world, not to mention personal traumas of our own past or present lives are only exacerbated by adding on the anxieties of the entire world. We are peace seekers and there seems to be less and less of it surrounding us. These are difficult times.
    Courage!
    Barbara

  56. Gail Higbee says:

    Dear Barbara
    Boy was that like falling down a rabbit hole, I just found your blog and I could relate to everything, the vertigo, hip problem, I had surgery a year ago and fibro since 1992.
    My hip took a year and I am going through a second bout of ear dizziness, did the ear crystal maneuver and it worked for at least four years but alas it’s back and I forgot about the ear maneuver and when l read your blog it all came back so I’ll have another go. Hope you are doing well, and are on the mend, I think my rehab was long because of my age I just turned 70. My husband is a chiropractor so he is a great help dealing with me. Please keep up the good work.

  57. Wow Gail! You really made my day. It has been 9 weeks since my hip replacement and today I was feeling so downhearted because I walked up the block yesterday and had leg pains all night and today. I was so discouraged as I thought I should be much farther along than that. Both my family doctor and the physiotherapist tell me I am expecting too much of myself. Well, with being 77, having had a heart attack at 73, fibro most of my life and now with recovering from hip surgery mobility feels so slow it is little wonder that I am not bouncing back like a 30 year old! I can ride my recumbent bike for 15 minutes now, walk up and down stairs, use the cane only outside the house, doing regular physio and stretches etc but keep thinking I should walk more outside without being so tired and legs aching. Plus, dizziness is slowly creeping in. So, I am an old woman, disabled (hopefully temporarily) with chronic pain, and a damaged heart which luckily has not bothered me since the heart attack. I have a dear husband who is very healthy, does everything around the house, and many supports so I consider myself lucky. Still, I want to get out and walk distances. You are fortunate to have a chiropractor for a husband. I have had the same chiropractor for 15 years and adore her. Lucky you to be living with one, haha! My husband is a retired math professor who knew nothing about health care but is rapidly learning.
    Keep in touch. we have a lot in common!
    Barbara

  58. Nancy says:

    Barbara, it sounds like you’re doing well after surgery!! That’s good to hear!! You say you think you should be able to do more…I feel the same way and so does everyone in my fibro support group!! I can’t do much more than you and I’m 58. I’d love to take long walks like I used to but my legs get too weak. I don’t handle stairs well. If I feel up to do things around the house, after about 20 minutes I need to take a break. If I push myself too far, I’m down and out for about a week. There’s a fine line. I know there are people worse off and better off so I’m thankful I’m in the middle. You may not be exactly where you were before surgery but it sure sounds like you’re doing great!! Keep up the good work!! Gentle hugs!!

  59. Hi Nancy: It is so necessary for me to receive these comments from wonderful fibro friends like you. I pushed myself too much last week and have suffered badly the past few days. While I know better I fall into the trap on days that are good ones and overdo it to my own detriment. Surgery for people with fibromyalgia presents a difficult challenge as the brain goes into immediate overdrive and hypervigilance rears its ugly head. Danger! Something frightening has occurred, be on the look out for ever present scary symptoms and so the cycle continues. Having bad nights as hospital experiences brought about unpleasant memories. Had surgery on a Thursday morning and discharged Sunday morning so not such a long time but hospitals don’t feel like a safe place for me! So, there you have it. Trying not to struggle but just BE! Thank you, thank you for your lovely sweet good wishes.
    Barbara

  60. Michele says:

    I came across this site after looking online about my symptoms. I’ve struggles years with endometriosis and had a hysterectomy 4 years ago. I’ve always suffered pains but not like I have now. These are different. I’ve have a few Drs I see including a gastroenterologist. I just got dxd with Hashimotos disease in December and myofacial pain a month ago. But today was the worst I ever experienced. Burning pains in arms and legs, abdominal pains and IBS and dizziness(room spinning). I feel Drs are missing something and wonder if there’s a blood test?! I apologize if this has been asked or answered as there’s too many posts fir me to read through. I have modified my diet and I do not drink alcohol. I get stuff joints, especially mornings, restless legs especially at night, and insomnia. I am so tired but feels like my mind is wired. At first I contributed most of my symptoms on Hashimotos- but since optimizing my levels and getting my antibodies lowered by diet and cutting out gluten, after this horrible experience today, I feel it may not be thyroid related. I will be calling my dr tomorrow, and any info on what I should ask him to test? Thank you

  61. Dear Michele: I am unclear regarding whether or not you have fibromyalgia? It seems as though thyroid issues are common among those of us with fibro.
    Restless legs and burning pains in legs and arms is common as well. If is up to us to work within ourselves with light exercise. If in fact you do have fibro there isn’t much any health professional can do for you. It requires us to be watchful about our breathing, do light exercises, particularly walking, engage is yoga or meditative practices such as Mindfulness Meditation and also Talk Therapy to be able to root out the cause of so many anxieties. Blood tests may rule out certain diseases but fibro is a dis-ease, not a disease, and it is an over-stimulated central nervous system disorder which blood tests will not reveal.
    Best wishes,
    Barbara

  62. Nancy says:

    Ah Barbara, I wish I could just go over and give you a gentle hug!! You sound like me…tend to over-do on the good days and then pay the price later. Why oh why do we keep doing this?? My fibro symptoms have gotten worse. It’s not supposed to be a progressive disease and I kinda thought maybe it was all in my head that I wasn’t feeling good but when I saw my doctor on Monday, she tested me again and confirmed it. I have more tender points and the pain was so severe I nearly jumped off the table. She even had difficulty doing my exam. For the breast exam, raising my arms up caused severe muscle spasms in my back. When I scooted toward the edge of the table for my PAP, I had severe muscle spasms and pains in my legs. She wants me to see a rheumatologist that specializes in fibro but there isn’t one near me. I will probably find one near my daughter 3 hours away. She did prescribe muscle relaxers. After all that, she found an irregular shaped neoplasm in my right breast. I’m waiting to hear when my biopsy is. I made light of it to my husband and daughter because I don’t want them to worry right now. I just told them I have a dark spot that needs to be biopsied. So, I’ve been holding all of this inside and it’s taking a toll on my nerves. Yeah, that’s me, always trying to be the strong one. Anyway, I don’t know why I’m telling you all this, you have enough on your plate recuperating from your surgery!! I guess I just needed an outlet. Thanks for being here! Gentle hugs!! ?

  63. Thanks Nancy! Here we are the end of summer and the beginning of weather changes. They sure do affect me greatly.
    Please keep in touch re the neoplasm in your breast. On top of all the cramps and pain having to worry about such things as real diseases rather than a dis-ease we are all struggling with, life can be challenging. I know how difficult it can be not wanting to keep talking to loved ones who get weary listening to our ever present list of symptoms . It is a double whammy. Wanting emotional support yet feeling guilty about ‘complaining’. Thank you for being supportive of me during this hip replacement.
    Patience, courage, peace is what we wish for one another,
    Barbara

  64. Nancy says:

    Aww, you’re sweet Barbara! I will let you know the biopsy results. I go on Oct. 14th. Since I’ve written last though, my neck started to really tighten up and get sore. I tried ice, heat, bio freeze, stretching exercises, muscle relaxers, Tylenol and I even resorted to Aleve without any relief. So I ended up back at the doctors. She seemed more concerned over the blood work I had done than my neck. My inflammation markers were high. My Vitamin B12 was very low. My Vitamin D was low even though I’m taking a vitamin D supplement. My thyroid was off so she re-ran that and my cholesterol was a bit high. So Vitamin B 12 shots every week for a while. I guess I just don’t understand how my vit. B12 & D can be low. I’ve heard we don’t absorb vitamins as well as people without FM. Have you heard this?? I eat meat every day. I’ve gotten more sunshine this summer than years before too. So I’m wearing a cervical collar waiting to find out when my PT starts. She’s going to call me on the repeat thyroid test. I’m feeling very overwhelmed right now. But I will keep you posted!! Gentle hugs!!

  65. Lyly says:

    Hello, I have Fibromyalgia and vertigo and also Raynauds phenomenon. My vertigo ALWAYS happens after some level of stress. The more stress, the worst the vertigo is. It could be the next day of a stressful event. And last for days or weeks depending on the level of stress I had. Try to see if it also happens to you. I am very observant and STRESS is the main culprit. Having Fibromyalgia does not help because anxiety is part of my everyday life !

  66. Yes, Lyly! I have the same experience. A stressful experience does not affect me that day but usually the following day. A very peculiar phenomenon. Calling yourself observant means you are highly sensitive, my main description of the fibromyalgia personality. You fit the profile exactly.
    Very best wishes,
    Barbara

  67. Lydia says:

    I also have ear problems that just recently started. Feeling of ear fullness and almost deaf in the right ear. Not pleasant

  68. Dear Lydia: Take care of those ears! it seems all our senses are affected when our central nervous system is in high alert.
    Keep up to date with hearing tests although I have spoken with people who say wearing of hearing aids is very aggravating for those of us with fibromyalgia. Still, it is important to use them if they help with hearing.
    Good luck with all that!
    Barbara

  69. Arnesta Glinton says:

    Hi my names is arnesta an i have firbormyalia i had firbormyalia for 3 yrs an now i have been experience headache, stiffness in my neck ,dizziness, my ear feel like they plug up at time i been take Cymbalta (60mg) an i think it to many mg for me i dnt like taking it an the way it make me feel one time my body like shook at switch it was so weird i like to ask do u know what my be causing me to feel dizziness and light headed i feel like im going pass out at time is there anything u can tell me abt this firbromayia an what i can do with all im going thru thank you please get back to me

  70. Arnesta: please do read my other blogs for more information. In particular read my latest two.
    Regards,
    Barbara

  71. Dear Barbara, don’t think my email is working, will make sure this next day.Found your site couple of hrs ago, thank God, 85 yes young, fibro forever,just now finding a support group. Will post this, even if it does not post, just because I am so grateful for you! your new friend, and to all the group, Bevy

  72. Dear Beverly:
    Thank you for now becoming my ‘new friend’! I am happy you found this website. Pass it along to our support group. We old women may be pain ridden and have many challenges but we have survived! This should be encouraging to others who are afraid that fibromyalgia is a DISEASE, but it isn’t! Its a syndrome that is- a dis-ease, which is NOT life threatening. We have to learn ways of living a satisfying life in spite of our struggles and no one can do much for us. We have to become masters of our own fate. Its interesting that along with the anxiety of our condition we are now burdened with the issues related to aging. But, we are strong women with a keen sense of social justice and empathy for others. It isn’t easy living in these difficult social and political times but we have ourselves to take care of first and foremost.
    I am happy we have become friends. Keep in touch.
    Kind regards,
    Barbara

  73. Miriam says:

    Hi,
    Have any of you tried applying the TMS techniques to treating Fibromyalgia and vertigo? Basically, according to Dr Sarno, both fibro and vertigo are manifestations of repressed emotions, and the symptoms can be significantly if not totally reduced.
    I was skeptic at first but all my pain symptoms disappeared after trying out the free programme: http://www.tmswiki.org/ppd/Structured_Educational_Program
    Please only reply to me if you have worked through the entire programme… it takes dedication and I don’t want to hear that these things don’t work – unless I get proof that someone else has followed it religiously.
    People with fibromyalgia have healed. It is not incurable, but unfortunately if you believe that it is not curable, you will not be cured.
    The best things in life are free 😉

  74. I haven’t tried this technique but I am convinced that fibromyalgia is caused by past trauma!
    Regards,
    Barbara

  75. Carol DustinsMom4ever says:

    Just came across your blog after researching head and scalp pain with my Fibromyalgia. Diagnosed over 20 years ago and it always, like all of us, gets worse with stress. Taking Neurontin and it has been increased due to this head pain for five days now. Also have Meniere’s with vertigo nausea and dizziness. Seeing a new ENT and he is ordering the balance function tests I had many years ago. Just making sure he’s not missing anything. The burning I have all over is so frustrating. But now this head pain sort of like a migraine is the worst. I cannot brush my hair without pain or lean back on the sofa to watch tv and relax. I have to use a pillow in between my head and the sofa to make sure it doesn’t touch anything. So very frustrating. Thank you for this venue giving us a chance to vent to others who truly understand. I have PTSD from witnessing my son’s suicide years ago. That adds to my problems. Life is a challenge for sure.

  76. My dear Carol:
    Reading about your son’s death and you living with this tragedy fills me with great sorrow. In addition because you have fibromyalgia you have a highly sensitive central nervous system. There is little wonder you are in so much pain. There is possibly another reason for your dizziness.I too take Neurontin (Gabapentin) and sometimes I get dizzy from that especially if taken on an empty stomach. One trick I have found for sleeping is to use a roll up cushion from the pharmacy so that my upper neck does not actually touch the pillow. The burning pain you have is quite common so you are not alone.
    Please keep in touch,
    Take care,
    Best wishes,
    Barbara

  77. Carol Wilson says:

    Thank you Barbara for the tip. I will definitely try that. Again, it is such a relief to find others I can talk to, who can actually relate to what I am feeling. I always wonder why we must suffer. SO many unanswered questions in life. That is for another day. Thank you again.

  78. Thanks Carol: You are right- there is so much suffering in the world and things don’t seem to be improving.We are bombarded with stress from world events every day and sometimes it seems our little problems are insignificant. However, it is all relative and the ways in which we suffer can also be damaging to our daily life. Enough philosophy. For now have courage and squeeze every moment of joy from life that is possible.
    Best wishes,
    Barbara

  79. Cam says:

    Dear Barbara,
    I don’t know if my other post went through or not, and I wrote such a big one! Anyhow, I’ll try to shorten it here. I happened upon your posts as I searched for answers to my Fibromyalgia that I’ve had since my mid-thirties, but it has increased exponentially since that time. Especially after my Mom’s death on my birthday two years ago. I am so frustrated by the lack of empathy from doctors, who seem to think I’m a hypochrondriac, and look at me suggesting anti-depressants pills. I need answers, suggestions, and haven’t found them yet. I am a person of great faith, and keep praying, and will always look up when I’m down, but your posts and compassion sharing and caring with those afflicted with this horrible disease, is comforting and encouraging at once. So thank you. I have anxiety attacks now too, which have heightened since Mom’s passing. Pains in my chest bones, migraines, nausea, dizziness, each day anew brings another ailment. I call it “pain of the day” I never know what’s going to show up! I try to infuse humor into my ailments in order to deal with it.

    Can I purchase your book? I’d love to read your jouney. And, I’m so sorry for your loss of your Mom…it’s so hard to lose the person who was your best friend and who loved you unconditionally, no matter what.

    Thanks for caring and sharing.
    God bless~

  80. Dear Cam:
    Your first post came through but I decided this last one was the best to post since you have given more detail.
    Others believing we are hypochondriacs is common. If anyone asks me how I am at any point in time I have decided to say I am fine no matter how miserable I might be feeling. The long list of ailments is very tedious to others listening to my challenges. I myself am guilty of berating myself and wondering if I am a hypochondriac. Its just that we are so in tune to our bodies being so highly sensitive persons that every new or even old ‘symptom’ has us in a state of anxiety. Those are the days we need to just chill out and tell ourselves we must let the anxieties subside.
    Yes, you can get the book from iUniverse. See how you order it on my website. It is old now by usual standards but I believe it lays the groundwork for the blogs I have written since then. All the 100+ blogs I have on this site will keep you busy reading for awhile!
    I relate to chest pains as I had a heart attack almost 5 years ago and my anxieties have accelerated since then when the chest area is involved. Like you, I too have anew ailments almost daily. The good news is that they aren’t life threatening and often disappear while new ones creep in!
    Try to stay away from too many medications and if possible ‘talk therapy’ with a professional therapist is a good alternative for anti-anxiety or anti-depressants used long term. In the short term they may be helpful but our basic personality is such that because we are highly sensitive and hyper-vigilant we need a good support system in place, professional/personal to help us through the rough patches.
    Best wishes and keep in touch,
    Barbara

  81. Hi all,

    I agree that you should stay away from medications, if at all they only provide temporary relief. There is indeed a lot of suffering in this world but some of it is so needless! People with fibro and other TMS symptoms have developed very high sensitivity – it is a way in which the body deals with certain emotions, then the pain turns into a habit and recurs because we learn to produce it. However the good news is that you can unlearn the pain by teaching yourself certain techniques. One of them is to fight conditioning – very often an unconscious thought (that we will feel pain after exercise for example) will produce the actual real pain (not in your head) even seconds later!

  82. Dear Miriam:
    Thank you for your comments. It is true that the mind-body connection is of utmost importance dealing with chronic pain, and any number of psycho-social-physiological issues. I wouldn’t suggest staying away from all medications, or that vigorous exercise can be advocated across the board for all people.Certainly mindfulness meditation, light exercise, Mindfulness-Based Stress Reduction, yoga, practicing logosynthesis, and chi-gong are all strategies one can work with to better understand the body-mind connection.
    I am happy that you have found ways to make that connection and that your pain has abetted.
    Best wishes,
    Barbara

  83. Linda says:

    Hi! I just found your site as Vertigo has been the newest symptom to show up with my fibromyalgia. I get calcium crystals easily in my kidneys and even keloids and other scar and tissues under my skin. Annoying but benign. They say it’s from my nerves reacting to nothing. Kinda like the pain I feel that “isn’t really there”. Joy right ?. Anyways I wanted to thank you for sharing your story and who to look for to fix this one part. I’m 41 so have a ways to go still, but every month I feel like something new pops up.

    Can’t wait for your book to arrive! I hope you are doing well and coping. I lost my dad 16 years ago and his birthday was the day of the eclipse. Bitter sweet. He would have loved it. He gave me my love of nature.

    Much love ??
    Linda

  84. Dear Linda: Your letter was lovely. I am sorry about your Dad. The day of the eclipse was my middle son’s birthday so for some it is a happy day and for others a bitter/sweet day, like life. yet those of us with this frustrating dis-ease it is an unending process of trying to keep up with these new symptoms. If it isn’t feet, its hands. If it isn’t abdominal it is legs or arms or back. It is almost a circular thing with pain and one never knows where it will attack. Sleep continues to plague us as does chronic fatigue, but the anxieties are by far the worst. All this doom and gloom BUT there is joy too. We know these flare-ups subside and we do have some not so bad days. Now that a new season is upon us we can expect the flare-ups and take better care of ourselves during the transition.We can exercise moderately, we can practice mindfulness, we can live in the moment. One blessing is that fibromyalgia is not life threatening and we can learn to accept our limitations. Be hopeful.
    Regards,
    Barbara

  85. Dianne says:

    I just found your site a couple days ago. I have had Fibromyalgia for 20+ years. This past year I have had many episodes where I suddenly feel really dizzy and nauseous and end up vomiting. It stays with me for a few hours then slowly eases up. I was referred to the RAMAC (Rapid Access Medical Assessment Clinic) where I live and after a very thorough examination, the doctor diagnosed Vertigo. He has referred me to a ENT doctor next to check if there is something going on in my inner ear. The past 20 years or more have been really tough dealing with Fibro. I thought I had ever symptom there is until this latest Vertigo started. Sleeping for more than 2-3 hours straight hasn’t happened for me for YEARS. The constant fatigue, pain and feeling like I have the flu all the time, really drains me and can bring me down if I let it. It really helps knowing I am not alone with this, when I read other people’s comments. It is a beautiful day here in the Okanagan, so I plan on enjoying some fresh air now that the smoke has cleared finally. Dianne

  86. Dear Dianne: My sympathies on your fires in the most beautiful province of B.C. I have spent many years in your province and have two sons and families living there. The smoke cannot be good for health and especially if your systems are compromised.
    Luckily for you medical marijuana is easier to obtain in B.C. than in many provinces. Taking the oil when I am in acute pain has been very helpful to me.It has been a great help for sleeping too! I take a wee bit under the tongue just before going to bed and really appreciate the benefits.
    But, seeing the physio for the maneuver was truly the best I could hope for with regards to vertigo and have not had another flare-up in several years. Best wishes and keep in touch.
    Regards,
    Barbara

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