I’m not sure what causes balance problems in those of us with fibromyalgia (FM), but it’s a definite problem for me. I have to be careful when bending to pick up something, and I have to be sure there’s a counter or piece of furniture nearby to hold onto. When I get up from a sitting or lying position, my balance is off and I have to be careful not to fall.
Let’s look at some potential reasons this could affect those of us with FM:
According to a study titled “Fibromyalgia is Associated with Impaired Balance and Falls,” there were 34 FM patients and 32 matching aged subjects who were administered the Balance Evaluation Systems Test (BESTest,) and had their balance confidence rated by the Activities-Specific Balance Confidence Scale (ABC.) The number of falls in the previous six months were reported. In order to assess FM severity, the Fibromyalgia Impact Questionnaire was used (FIQ.) The fibromyalgia patients reported 37 falls, and the healthy subjects had only six during that six-month period of time.
It’s possible that the trigger points in our neck and shoulders send faulty information to our brains, affecting our center of balance. Even without feeling dizzy, our gait can feel off and the fear of falling is very real. I have to be especially careful on stairs. If I’m tired and I’ve been walking for 10 minutes or more, I notice that I start walking more unsteadily.
If you have balance issues the first thing you might want to do is to see an ENT (ear, nose, and throat) physician. It’s possible that crystals in the inner ear have come loose and are affecting your balance. That has happened to me, but I continue to have balance issues regardless of having had that circumstance addressed.
When I sit up from a lying-down position, I wait a few seconds before standing. I don’t know what you have experienced, but there have been times when I was standing one minute and on the ground the next, having no idea how I fell. Because of FM, I find myself always holding onto door frames, counters, stair rails, leaning against walls, etc., to avoid falling.
Do you struggle with balance issues?
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Yes, I certainly do. Some days are better than others. I am not diagnosed with a milder case of P.O.T.S (cardio wouldn’t both unless I blacked out). If I’ve just parked my car and a car is rolling in on my side, I flip out! The brain sensation is sensational. I’ve been known to walk into walls; climb a hill walking sideways, and stagger like a drunk person. I use banisters as my buddy system and not beyond using arms of others. My depth perception is severely off as well. I avoid curbs and steps as often as I can when I am solo especially. I am uber sensitive to sounds, smells, so why not sight?! My brain does not compute well–either upward or downward mode which is not normal. I think that the Senior Citizen’s course on Balance is beneficial to me. Of course, even there, I have to modify everything. Just call me Ms. Modification. I’m also Ms. Congeniality as well. 😉
Julie, I have the same issues. I hate when when things move next to me, like car rolling in, it freaks me out today!
I have issues with dropping at least three objects a day. I bump into things as well. I do notice when on my treadmill for awhile, I become more likely to feel unsteady after a mile.
Thanks for the information containing my condition.
I have all of the problems you have addressed. Also, I have noticed people stepping into my peripheral vision shocks me when I am shopping. I totally dislike getting in an elevator or on an escalator. I feel like I’m going to fall. I have had the dizzy-vertigo for sixteen years. I didn’t know where it came from, but with current articles, like this one, I’m learning.
I also have balance issues and am always afraid I’m going to fall and crack my head!. I am very, very careful when walking. I noticed this problem even before I was diagnosed when I would walk down the hall at work and feel like I was tipping over and would have to touch the wall to keep moving. Once I was diagnosed and did more research I realized this was part of the fibromyalgia. I’m glad my house is full of things I can hang onto when I feel my balance going. Good article.
Pamela, it’s scary isn’t it? Even if I bend to reach something on a shelf I have to hold on because it feels like I’ll fall
Yes to the “reaching up” issue. I have had quite a few issues with my balance.(I had suffered some very scary episodes of falls…enough for me to seek help as I was becoming worried re my safety/breaking a bone). However, luckily for me, my regular Physio referred me to a Diagnostic Physiotherapist, who “re-aligned the crystals in my L) Posterior Ear Canal”, and this has helped me Greatly. Although the balance is better, I am still experiencing a LOT of pain around my ear/jaw on this side, and jaw on my R) side (the good old TMJD). The issue re reaching up, though is something that has not improved with this treatment. I much prefer to use a chair/small step ladder to reach things that are above my head. (only problem with the step-ladder is that my husband doesn’t really understand why I bought this, and keeps putting it away in the shed down the back garden….hence another issue…lol )
Bronwyn, can’t you explain to your husband why you need it in the house? Safety is the important thing
I believe my balance issues come as a direct result of my myofascial tissue “crinkling”, tightening up everything, reducing my flexibility, increasing pain and impairing my ability to microbalance.
Janie, it’s no fun have issues with our balance.
Balance issues are very challenging. I also have macular degeneration and neuropathy which affect my balance even more. I started using a cane 2 years ago because I was so unsteady when walking and I have to be honest…I hate needing it. I have tried to make my cane a fashion statement and have several in different colors to match what I am wear. People always comment so that always makes me smile.
Delores, I love that you gave canes to match your wardrobe ? Keep smiling!
I have the same problem.I went and seen my PCP about my problem and asked me if I thought had I though about a cane. So he told me that I need to get me one. And then asked me if I would do physical therapy. So I got me a cane and starting going to therapy. I was taught some exercises that I could do on my own, which I have been doing.
Tena, how’s the therapy working? Do you find the cane to be helpful?
This year has seen a real increase in balance problems. This morning I washed my hair in the kitchen sink and after standing up and wrapping a towel around my head I began spinning inside my head which was beginning to be followed by my head and body beginning to spin. I realized that I had my eyes closed and as I grabbed for the fridge handle to keep from falling I opened my eyes and it receded. So scary as it was quite a violent feeling. The worst I have had, actually.
I wanted to bring up another possible reason for our unsteadiness which you have written about before. I can’t remember the name of it but it has to do with a constriction of blood and nerve impulses at the base of the head and neck. I work with a chiropractor who is convinced that this is the root of all evil for fibro. She really does give me relief but I cannot afford to go as often as I would need to to keep the channel in the neck open. Robin, I am sure you will remember this. It has also been mentioned that whipash could be a cause for this effect.
Kitty, what a scary experience! It sounds like it could be vertigo. I cannot get my hair washed at a salon because leaning back over the sink kicks my vertigo in. I also can’t lay flat on my back or have the dentist chair lowered too much. It really sucks doesn’t it?
Robin and Kitty. I just had to answer this. I am just about sure that the problem is Vertigo. I also had a whiplash many years ago and wound up with vertigo. I believe I suffered with this terrible condition for about six years, seeing a Neurologist all that while. He was giving me a tranquilizer for the dizziness. Well, one day my PCP told me to go to a ENT that he recommended. I did and the Dr. did what is called an Epley maneuver (actually, his Nurse did it.) Took about five minutes, lying on a table and repositioning my head from one side to the other. I got up and all those years of Vertigo were gone!! I’m sure the Neurologist knew of this maneuver, but I was a good source of income..no wonder insurance companies complain. This maneuver is well known, I found out and I can even do it lying in bed, if I needed to. It just corrects the imbalance in your semi-circular canals at the top of the spine and voila!! You are normal again. I could not look up or down without getting Vertigo. Never close your eyes when this happens. I found that concentrating on one object on a wall will stop it. I use to do that in bed, when I would have an episode when turning over.
And BRONWYN, if I were you and my husband moved my little stepladder out in the garage or garden shed, that’s where he would reside from then on.
Janus, I’ve had that done and got about 6 months relief. I hated the experience as I felt I was falling off.
Same for me..I thought it was because I had labyrinthitis afew years back. But I now have Fibromyalgia fishnjded
It does scare me a lot
I have found physical therapy to be very helpful especially in the winter when I am so affected by the cold. Heat and stretching exercises help a lot. I also took a course given by our local health Dept (NY) on fall prevention which was very worthwhile. I have lived with fibro for over 20 years and learned that no one knows my body better than me and anything that might help me feel better is worth trying.
Delores, so glad that physical therapy is helping you and the course on fall prevention sounds awesome. You’re so right, no one knows our body better than we do.
I too have balance issues. I have been using a cane the last several years. I really gives me confidence when walking. Mostly I feel like I’m existing on a tilt lol. If I’m sitting down, especially when tired, I find my body curls to the right as I nod off. I’ve asked my GP about it a few times, but he seemed not to be too concerned about it.
I do have a mild scoliosis and my spine curves the the right. So that makes sense for me. I WISH I could afford to have chiropractic and massage therapy treatment. It makes me so angry when if only I could afford these treatments, I may feel well enough to work again and become a tax paying citizen again too. Grrrr!
I also suffer with vertigo. But that I blame 2 nasty whiplashes as the cause. I can turn my head to the left and lift my chin up and cause vertigo to happen. But it shows up from time to time if I’ve slept “wrong” and got a kink in my neck (often from falling asleep in my chair!).
So yeah, I can definitely say that balance issues are part of my Fibro experience. The cane really makes a difference for me. Not only to help support my back when I walk, but to help me walk with confidence and not worry about falling over or falling down.
If you have considered using a cane, try it out! You can buy a cheap one at your local (Shopper’s Drug Mart) drug store, under $20 if I recall correctly (in Canada).
Shannon, I’m so glad you’re a part of this community and everything you share!
Shannon, read my post to Robin and Kitty. You can get your Vertigo corrected in five minutes. Most Doctors know about the Epley (sp?) maneuver. I went to an ENT for mine (Ear,nose and throat specialist.)
I pretty much look like a raging drunk at all times…funny but not really. It is so embarrassing , just one more reason to stay hidden at home in my studio.
Pam I’m so sorry to hear that. Would a cane or walker help?
My niece is21 and have to use walker all time.she walk like a drunk with out no Dr can tell her what is wrong
Jeannette, I’m so sorry to hear about your niece! Has she seen a neurologist?
I moved from the Midwest where I was diagnosed with Fibro., among other disorders. My Dr. here in N.Y. refuses to believe that I suffer from this. As a result, I do not get the anti-inflammatory medication that was helping me so much. I know some of you might say “get another Dr.,” but I would think that “Dr.shopping” would be difficult. It’s a small town. One never knows how a new Dr. would consider Fibromyalgia. It amazes me that some Doctors still don’t think it is a real disorder and some don’t like it when “you” tell them what you are suffering from. I believe mine has the opinion: “If he doesn’t diagnose it, he doesn’t treat it.” I hurt all the time. I supplement with Tylenol, which is probably killing my liver. I DO take a pain medication for compression fractures in my spine, but my Dr. has made it clear that he will not increase the dosage…..so, it’s been a few years and of course, my body has developed a tolerance to it. The pain remains… not as constant and I am grateful that I have medication at all. Without a bit of relief, I don’t know what I would do. As you all know, the pain can be excruciating. There! I am done ranting (for the moment.)
I’m so sorry for the suffering you endure! I love my functional medicine doctor, she’s treating my whole body, not just looking at symptoms and she’s very familiar with fibromyalgia.
Janus
You need to find another doctor. As challenging as that might be it will most assuredly be worth it. You have every right to “doctor shop” until you find someone sympathetic who will help you. Try going on line to research doctors in your area. Try the web site Health Grades ..it is very helpful. My fibro is managed by my rheumatologist who is very knowledgeable and understanding. Same for my primary. Sending good energy that you will find that right doctor who will listen and work with you to improve the quality of your life.
Good luck
I, too, had a fall over a month ago….I don’t know how it happened either! One minute I’m walking around the foot of the bed, the next minute, I’m crashing to the floor on my right side. I really ruined my rt arm, it’s still killing me to the point where I can’t even turn on that side in bed,can’t move it or lift it without pain, it’s always hurting. But that fall was so strange, I didn’t feel that I slipped or tripped, I just went down. I wasn’t dizzy either. Now I’m scared it will happen again, out of the blue. Geez.
Diane, it hasn’t happened to me in awhile, here’s hoping you stay on your feet!
Good afternoon Robin,
I can so very emphasize with the balance problems brought on by FM. I’ve been out of balance as long as I can remember. I had tubes put in my ears at three along with a tonsillectomy. At 4 and 5, I had horrible ear infections. Outgrew the ear infections, and then rolled full blown right into sinus infections for years. Long story short…I am still out of balance. Too bad we can’t be balanced like a car. I constantly fear that if I was ever pulled over by the police that they never ask me to walk a straight line. There’s no way I would pass any of the sobriety tests. LoL
Thank you so very much for sharing your story,
~Andrea
MS Gulf Coast
My pleasure Andrea! I’m sorry about your balance issues, it’s just no fun ?
I use a Walker especially when out of the house. I fall to the left, to the right , forwards, backwards it’s crazy. I know I must look like a drunk, but I don’t care. The Walker is a visual sign to people that I do have health issues. I know if I get behind the wheel of a car after walking like this, there are probably people who want to call the police on me. I probably wouldn’t even pass a walking test, but they’d find no alcohol in me so they’d have to let me go. Last time I fell was a couple of months ago. My roommates son witnessed it. Was lucky when I fell that I didn’t get hurt. I’ve had quite a number of times that without that Walker I’d have fallen. I know when my body begins to tire I need to sit down. If I don’t the chance of falling goes up exponentially. I do everything in starts and stops so I don’t tire out. Some days I shower and it’s time to rest. Some days I can go longer. There’s no rhyme or reason to this infuriating disease or its side affects. You just take it hour by hour, day by day and let your body guide you as to what you can do. I just deal with it with humor. Since I haven’t been approved for my disability I have no insurance so it’s been an uphill battle for a diagnosis & treatment. But I have no pain meds so that’s difficult, so otc pain pills are a must. Best of luck to everyone.
I so agree with taking it hour by hour and day by day. Susan I’m glad you have the walker, we need to do what we can to stay safe and listen to our body. Thanks for sharing!
Oh yes! I saw an ENT first. Nothing wrong.
I’m certain it comes from the neck and shoulders. This is my main trigger area.
Despite having the issue for some time, it still triggers anxiety. I’ve learned that I’m ok and it will pass.
I’ve found myself not wanting to stand still because I don’t feel steady. So I often shuffle my feet, step side to side or even in a box pattern.
Samantha, interesting that you say that. I have to keep walking, even slowly,when my hubby stops to look at something. I can’t stand still because I feel off balance and it exhausts me
I am experiencing balance issues also. I’m really surprised that no one has mentioned Meniere’s Disease. It’s an over accumulation of fluid in the inner ear. I was diagnosed with that many years ago. I have to limit the amount of salt in my diet. You can imagine how the colonoscopy prep affected me! I also have Fibro, Restless Legs Syndrome — a bad case getting steadily worse, and Essential Thrombocythemia — a chronic blood cancer. All of these contribute to my balance issues. When my balance gets really bad, I use a cane. My PT gave me some exercises to do at home. I haven’t really worked on them, but I need to, so I guess I will.
I love getting to vent to you all!
I have a 27 degree curve in the lower part of my spine and dreadful balance issues that are just starting to impede my everyday life.
I have been reading this forum this morning while i am googling just what. Could be wrong with me and can identify with nearly every single post, so am taking notes and will discuss with the neurologist at my appointment in 2 weeks.
I feel anxious, have hot flushes, escalators scare me to death and i cant walk down hills but can walk up.
My neck is constantly tense and my lower back, I spend a small fortune on Voltaren gel and pain relief while constantly warming up heat bags in the microwave.
I get a massage once a fortnight which is wonderful and I am usually good for a day or two afterwards………its my favourite time, i try to squeeze everything i can into these days.
When driving if I car pulls up next to me at a stop sign and it is still moving slightly my brain freaks out and i think I am moving too lol I have to laugh at myself or I will go crazy.
I constantly feel like I am walking sideways to the right, and as I have gotten older and added a few kilos to my body…….as you do……..I feel like my unbalancedness…….is that a word lol……….has gotten markedly worse.
Cold weather is my nemesis, it just exacerbates all these issues ten fold.
Anyway fellow unbalanceders that is my rant for this morning.
Any help or suggestions would be greatly appreciated as I tackle this monster that is plaguing me.
Oh and I also have brain fog……well at least thats what I call it when everything is flaring at once and I cant stand even speaking to people that cant get to the point………or maybe that is just who i normally am lol
Wow Ann, I can so relate. I finally got a walker that I borrowed from our community caregivers. It gives me so much confidence!
I cannot believe so many people have some of the same issues I have. If I walk over 10 minutes I start walking like a drunk. Can get no medical answers. I don’t drive and when I ride I close my eyes a lot. My therapy doctor says all in my head and GP says about same. Going to a chiropractor and he got me out of pain. It is not normal to walk like this. None of them have seen how I walk, they just check me when sitting. I am so tired of no answers.
Sherry, I also start limping and walking funny when I’ve been walking for even 5 minutes
I have a bit of balance issues. No one seems to take them seriously since I’m 35 and to them it’s unheard of. But I do find myself moving left a lot when I’m walking up straight with a bit of an incline. I also bump in to walls around cutting corners. But it is more intense at times and other subtle or I have got use to it…lol. I tend to have more intense episodes around my cycle but I have been to the doctor and my brain and bloodwork all come back great so it’s something I have accepted. I just try and be careful but I notice that walking aerobics/general walks helps.
I’ve been newly diagnosed this year with Fibro but the pain and problems have been going on for over 2 years. I finally got an answer. As for balance problems, I walk into walls constantly as I tend to lean right for some reason. My biggest problem is falling. I’ve fallen (major falls) 5 times in the last 6 months. I no longer feel my left knee unless there is pressure which hurts horribly. It’s kind of numb. The pain from these falls continues in my arm in leg and both have become “weak”. It scares me to walk outside in the rain for fear of falling.