Balance Problems Getting Worse with Fibromyalgia & ME/CFS

I have never been what you could call a “graceful” person.  I gave my mother plenty of scares when I was a child with all of my falls and accidents I would have running into things and falling off of bicycles and other clumsy stunts.  I’m sure some of the damage to my back and neck has come from some of those bad falls as a child.  Eventually, I grew out of that awkward stage, thank God! 

I’ve been noticing that over the past few months, however, that I am starting to stumble and lose my balance quite frequently.  It is getting so frequent and obvious that other people are noticing and making comments and jokes about it.  Last year I had posted a study that found that poor balance and falls were associated with Fibromyalgia, but I never remember being this clumsy over the past 20 years. 

I really seem to notice the balance problems when I am at work at the cash register.   I seem to lose my balance a lot when I am standing in one spot for a while.  I go to move just a little and I stumble and have to hold on to the register so I don’t fall over.  It’s embarrassing for me but I try to act like nothing is happening and I just keep going.  If someone makes a joke about me stumbling around I just laugh.  It’s not worth getting upset over because it’s something that I can’t really explain – it’s just another weird part of the disease. 

Do you stumble and lose your balance a lot?  Do other people notice and comment?

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  1. My balance has gotten worse over the past two years. I got my boxer boy Beau last summer to train as a balance dog. He usually walks on my right side since I tend to sway and stumble to the left and he freezes and leans away so I can recover balance. I also just got a power chair this week (it was a two month process with doctor and PT evals) because I simply cannot stand or walk for more than a few minutes without losing balance. Between the chair and the dog, I’m good to go just about anywhere and not have to worry about falling.

    I’m terrified of falling. I have so many joints that have little to no cartilage left that a serious fall would mean a joint replacement. So I’m doing all I can to make sure there are no more falls in my future!

  2. Carol Davidson says:

    I have been like that for the last year. I have always had the “fog” episodes which also affect your balance. In the last 2 months I have actually fell and hurt myself because of dizziness to the point that I fall over. The last time I stumbled about 5ft and I put my hands up because I knew I was going to fall into a wall. I missed and hit my face on the casing around my bathroom door. I bruised the bridge and my cheekbone. It is still sore but the bruising has gone away. I am going to discuss this with my rheumatologist when I see him next week.

  3. Linda Schrock says:

    I lose my balance alot, also, and have noticed it more in the past couple of years. I have had Fibromyalgia for 19 years now. I hate it! I, also notice it more when I have sinus or allergy issues going on it seems.

  4. I haven’t had good balance for many years. It is getting worse as time goes by. I have had some serious falls. Twice I had to call an ambulence. I walk with a walker now. When I try to use my cane I am very unsteady and my legs hurt from hip to toe. A walker helps with the pain and my balance. I am grateful to have come across this issue.

  5. Allicia Edwards says:

    I have also noticed in the past couple of years that my balance is off and I stumble quite a bit. If I was pulled over by the cops and asked to walk the straight line they may as well lock me up. I don’t let it get to me it is just another thing I laugh off if others notice. Dizziness can make it 10 times worse and I figure my body is telling me to sit the hell down and rest.

  6. OMG! I never related my stumbling and tripping to Fibromyalgia! I was diagnosed around 1995 or so… My father even makes jokes like “you’d trip over air if you could” haha I always try to remember bring my phone into the bathroom when I take a shower in case I fall because I have come close a few times. I find it very interesting that it’s more than likely due to my FMS – makes sense to me, though. I have several other medical issues so am glad that I saw this and can at least relate my trips and stumbling to something! Thanks for posting!

  7. Susan Cremeans says:

    I have been challenged with balance/dizziness issues for many years. I broke my right foot in January from falling. In the last 6 weeks I’ve had 2 falls: over a low fence; and down the front steps. Each of those falls I landed laying on my side. I have balance, stumbling problems daily, and dizziness happens several times a week now. My stumbling and falling worries my husband because I have bad osteoporis, too. I was diagnosed in ’98 with Fibromyalgia/CFS after many years of suffering.

    Since diagnosed w/Fibromyalgia, additional auto-immune issues have reared their ugly heads such as chronic mono and bladder inflamation Any help in understanding and dealing these things would very much appreciated. Thank you.

  8. Natasha Flannigan says:

    I definately notice my dizziness gets much work when I have sinus issues. I have been dealing with balance/vertigo/dizziness now going on 2 years. Done everything to try to fix it with little or no result..

  9. I have a lot of issues with balance – I get dizzy, and start to fall to the right – always the right. I haven’t gotten so bad that I have actually fallen though – hope it doesn’t get there. I talk about it to my family and friends so they know what’s going on – of course, they don’t REALLY know what’s going on… I don’t even really know it seems… bless them for trying. I never really know what to do – but my Dr. did give me meclazine for when the dizziness is really bad, and it helps.

    • One Who Knows says:

      Be careful w/ “Antivert” ALA meclazine. It is an Antichloergenic that recently was revealed to hasten Alzheimers.. Along w/ Benedryl… Xanax… Prilosec… Google Anticholergenics… I want to keep risk of Alzheimer’s at bay as LONG as possible!

  10. I know there are days that I misjudge every doorway, walk into everything….perception is off. So I always have bruises! I often lose my balance so I no longer wear heels.

  11. I was diagnosed with fibro. earlier this year however; like many my symptoms were all in my head for years. I have dealt with poor balance since I was a kid and true vertigo for 15 years. This has caused many stumbles and falls, crashing into walls and door frames etc… I can always tell when I am about to suffer from a severe case of vertigo, because about 3-4 days before hand I have trouble walking through doors, down halls, getting into vehicles- I tend to bounce off things continually like a ping-pong ball. It is embarrassing and makes life challenging at times. I never associated the balance issue with the fibro. though. I no longer climb up on ladders, stepping stools, or chairs because of the spills I have taken. I only average about 2.5 hours of sleep a night, but have found on nights when sleep is even less my balance issues become far worse.

  12. Wow, I knew my balance is worse the last couple of years and it is definitely very bad when I am tired or sick, but my doctors have repeatedly told me it has nothing to do with the FMS. I am the running joke in our family and we too have a “tripping on air bumps” joke. It does get old but I try not to let it get to me.. heh I thought I was just getting more “blonde” the older I get!

  13. I am so glad that I found this article. My mom has fibro and has been going from one Dr. to the next trying to find out the cause of her falling and balance issues. Not one of them has suggested that it is probably related to the FMS. A neurologist told her today that she has dementia but I am wondering if her memory problems are also a result of 15 years of suffering with this awful disease. Has anyone else got terrible memory problems as well?

    • Tooany MDs are still not believers that Fibro REALLY exists. I spent a lot of time thinking I was going crazy…. The issues are not necessarily dementia.. But Fibro Fog!! I will forget a name… Then about 2 hrs later recall them!! Then other things are right there!! I also had other weird symptoms.. restless Legs… Low Mg ( magnesium) causing major Charley Horses in my lg muscle groups!! quads!!! Sweating down my back!! IBS….. Oh… VERY painful Illiotibial bands( ITBs) on the sides of my hip / upper legs!! Soon painful to sleep!! The burned and added to my sleep issues!! I KNIW all to many symptoms. I found a book written by and MD….” What your MD never told you and your afraid to ask” it’s eye opening and helps you know ITS NOT IN YOUR MIND!! Plz read ur.. Request thru library or buy from bookstore! I found it at my Pharmacy!! I wish you ally just and talk about it! It’s more common than you think!! Ask about MDs who Know how to treat rather than poo pooing you!! Prayers to sufferers!!

  14. It could be vertigo.

  15. Ginni Perry says:

    I too suffer from balance problems. I have Fibro and Behcet’s Disease, also Benign Paroxysmal Positional Vertigo. I was in a wheelchair for 7 years and am now walking again but often take my wheelie walker with me when I am going shopping.Not too sure where the balance thing is from, but I am hopeless at it. See your Neuro if you are having real problems….MS and Behcet’s are often a possibilty.
    Big hugs to you all

  16. I was diagnosed about 2 1/2 years ago with Fibro. This was brought on by having 16 surgeries in one year time (The stresser, had symptoms lots sooner but always went away when I got well) The last 6 months I have been noticing that I tend to drift to my right when walking down the halls where I work especially when tired. I am constantly tripping but I put that down to being tired and dragging my left foot (turns in a little bit). Interesting that this seems to be common with Fibro people. Would be a good study for someone to have. Is it actually something caused by Fibro or is it caused by the body getting too tired to do right. Some of you mentioned sinus problems. I also have bad seasonal allergies that cause sinus’ to be clogged in Spring and Fall. Is a combination of this (maybe a little fluid on inner ears) and tired and muscles hurting causing the drifting and falling or is it actually a whole different problem that Fibro causes?

  17. OMG! I thought I was going crazy. I was finally diagnosed with fibro but have been suffering for years. My balance has gotten worse over the past 6 months. I also trip over air and bounce off the wall sometimes. it’s scary but thanks to all of you have posted,at least I know I’m not alone.

  18. as anybody else got worsening memory broblems,cannot remember from minutes ago and can not even work out change from shopping for my mother.

  19. joanne potter says:

    my off balance became a real problem had tests brain scans they said i had menaires desease, many times i just fall on the floor thought it was to much beer lol people used to say shes fell again,least i no what it all is now , im having trouble thinkin what im writing here now 🙁

  20. Hi, I think I commented before but cannot find my comments. I am a senior citizen diagnosed with fibro 10+ yrs ago but have probably had it for 59 yrs. Accidentally I’ve come to realize that a dog is very beneficial for balance disorders and if you are ambulatory and weigh 200lbs or less a 20-25lb dog is sufficient as a counter weight. Our first dog for therapy work always helped me up when I fell and though not registered as such he was my service dog as well as my sons therapy dog. I was a professional trainer and have now had a great grandson of our first registered and working for 9yrs. My ANGEL saves me from approximately 150 falls a year!!! He also is very beneficial in regards to walking speed—-granny doesn’t crawl she moves out. This dog is for me a miracle and so many people could benefit from a dog. He is a Boston Terrier; French Bulldogs would be a good choice too.

  21. Hi, its me again and I see no response to my suggestion so perhaps I should explain further. I have attempted to make new doorways and furniture attacks me quite often and of course like the rest of us I trip on air. I have one ankle that I have to wear a brace on and need new knees but all the fibro stuff was there for years before the arthritis stepped in to make life even more interesting and painful. For me fibro is normal, having had it so long but its so wonderful to know others share the same problems. Pain is constant,increasing for a few seconds to a few minutes perhaps 1000 times a day to at least a 10. I do better in cold dry weather and tend to hate summer because its almost always to hot and I feel worse. My dear dog also knows where I hurt the most and lick massages the pain to nearly intolerable pain level then licks that pain away completely at least for that hour or day. Try to keep a smile on and know their are others who have been down the same path before you. Have a great day!!!

    • I know this post is a few years old, but I thought I should reply because maybe it would help someone. ME symptoms often flare up when it’s hot. If you’re having neuro symptoms that always get worse when you’re warm and better when you’re cool, you should get checked. Hope you’re well now in 2016.

  22. I suffer from fibromyalgia and spend most of my time in bed. I own 2 large dogs. Although I often walk with a cane my dogs are always there to be of service.I will often have 1or the other help me up the stairs. If I fall I can get up as long as I have 1 of my girls (dogs) with me. They seem to always know when I am in pain or even when I am sad. Just having them to talk to helps because they never question my truthfulness. Dogs are wonderful and only ask to be loved in return. To them I am not invisible.

  23. I feel so relieved to read the comments regarding falling. I have been unwell for two years and have had several falls. Mine tends to be tripping up and falling flat on mu face. I really thought I was going mad so it is so refreshing to read other people have the same problem.. I would agree lack of, or the inability to sleep, makes the symptoms much worse.

  24. Thank you all for posting about vertigo, dizziness, falling, inability to sleep. I have had positional vertigo since 1995. Gone to neurologists and through tons of tests and ten or more years ago I just gave up, my body learned to adapt to physical reactions to all the tests and doctors don’t even believe me.
    As far as the falling, it’s terrifying. I also fall for no reason, trip over air, walk into everything. I recently inherited a fully furnished (I’d call it over-furnished) house with a second floor, which means stairs, which terrify me. I’m eliminating most of the furniture as it’s in my way and I don’t need more junk to walk into and fall over. I also drop things for no reason, things just seem to fall out of my hands. Can’t sleep, have squat for memory, and I’m so tired all the time. Not being able to sleep is so sucky, I feel like crap all the time. A few months ago I got a really bad pain in the middle of my back around the right shoulder like a knife was stuck there and it’s been there ever since.
    Thanks for letting me whine here. 🙂

  25. I never knew that fibromyalgia could cause balance problems. I have had fibro for about 15 years, but this has just started. I am stumbling, uneven gait. Fill like I am going to fall all the time. My husband made me go to bed last night it was so bad.


  26. carrie hale says:

    My daughter is 2. When she was a baby I was terrified I would fall with her. I got diagnosed with FMS about a year ago, but I have always had bouts with balance problems. Mostly I’ve always been uncordinated and misjudged the occassional doorway. Now I have periods sometimes lasting a month or more where my balance is really bad. I almost fell into our flat screen tv earlier today. My vision also gets blurry sometimes. I have migraines, so I’m not sure if these are related to that, but it’s all connected to FMS anyway. In my research I also found that the spells I have after walking or exercising can be attributed to FMS. They feel like low blood sugar, but they aren’t. I checked. I’ll get so dizzy I almost pass out. Once I literally laid in the floor in an effort to get everything to stop spinning. I have found that doing gentle Yoga helps a lot with my balance, but I have a 2 year old and I work from home. Add the low energy and motivation from fibro to that, I don’t do yoga that often. I would suggest it for anyone with fibro if they can manage to do it. You can find plenty of video yoga classes on youtube for free.

  27. jean nightingale says:

    its really helpful to have an exchange of everyone’s experiences with getting diagnosed with fibromyalgia.i write this hoping it might help someone out there thinking they are going crazyas I did until recently when my doctor and chiropractor told me they suspected I had fibromyalgia.
    A couple of years ago I was away in our van on holiday and got out of bed too fast and everything spun around it was so bad (and frightening)that we called an ambulance to take me to hospital,I was told I had vertigo- not good I had seen what that did to my husband who had suffered with it for several years.!i also fell sideways off camp chair and hit my side on ground,possibly this didn’t help with later symptoms?
    On returning home I eventually saw my husbands ENT specialist who performed an elyse (not sure of spelling) manoeuvre that moved the crystals in my ear to their correct position and what a miracle I had no more episodes! I do however now have change in my balance some days I feel like my feet are not connecting with the ground(I tend to hang on to my husbands arm while crossing the road on those days!)I do take things slowly when getting out of bed or bending to pick things up off floor now.
    The many symptoms mentioned above -stabbing pain in forehead and ribs etc I have had for many years all put down to arthritis ,back problems all due to heavy physical work over many years!it seems these ‘weird’ symptoms get confused with all sorts of others along the way.i have suffered depression for many years and panic attacks at times seems they could have all been connected with final diagnosis.
    My daughter has MS and it seemed strange we were getting similar symptoms as I found out later they are similar !i had MRI to eliminate MS ,I don’t have rheumatoid arthritis or lupus which seem to only way to confirm the likely hood of it being Fibromyalgia.
    Sorry to go on but hoping these” few” words help someone out there to feel better in all the confusion that comes with these odd symptoms

  28. Donna Whitbeck says:

    Though I’ve had diagnosed FM for 30 years (but believe it was much, much longer) I’ve only started to hear balance and dizziness problems associated w/ it for about a month. I’ve had bouts of these problems off and on for many years, and in 2014 began fainting as well- testing reveals nothing, of course. I went to a PT/OT for several months and it was a great help. My therapist re-taught me how to move, walk, turn, reach, do stairs. My confidence increased as well and have followed her encouragement to “dance” and be playful in movement instead of locked inside, always “walking the walls and furniture,” and watching the floor. Of course the dizziness is still there, I could faint anytime, and balance fluctuates. But life is somewhat easier w/o constant fearfulness and the ability to move more freely again. I also do tai chi/chi gong w/ a dvd at home (started w/ a class 1st) when I am not too fatigued, painful, or unbalanced (!) and the gentle movement and mindful breathing help me. Yoga I haven’t tried yet, but my d-i-l highly recommends it (she does not have FM) but I hesitate because I really don’t think I could do the poses I’ve see. New year, new thing to try maybe. Best wishes, try to stay strong, do what you are able,

  29. Emily Plummer says:

    I was diagnosed with Fibromyalgia around 6 years ago although I’m certain I have had it much longer than that. I have suffered from sleeplessness, joint stiffness, severe pains, depression and fatigue. My neurologist prescribed duloxetin 40mg daily (Given as 20mg twice daily), although it did relieve some of the pain, I still suffered from joint stiffness and extreme fatigue. Finally, i started on Fibromyalgia herbal formula i ordered from NewLife Herbal Clinic, this herbal formula did the magic! almost immediately i started usage, i started noticing a general reduction of symptoms including the very severe pains and fatigue. 9 weeks into usage, the disease has totally succumbed to this herbal treatment. The whole pains and terrible fatigue has seized and i am now able to function fully well again. (Visit their website www . newlifeherbalclinic . com ) I’m able to get out of bed in the morning and have more energy to go about my daily activities.

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