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Anyone have Balance issues?
15 Replies
dsm8122 - May 26

My balance is not as good as it use to be. When i do Yoga I get wobbly but don't fall over. Notice it most in the morning and evening. Sometimes it seems like i am walking a little crooked and i seem to bump into things more often. i am not falling or staggering but just feel a little off. Sound familar? Thanks for sharing!


Patty P - May 26

My balance is also off, like you I have noticed that I too have been walking a bit crooked. :) If you had posted this three days ago, I would still be able to say that I had not fallen yet, but I just fell in the tub while turning around. I was assured by my doctor that balance can be an issue with Fibro. and recommended installing grab bars..... I don't feel old enough to install those just yet (I'm in my early 40's)!
I try and hide my balance problems especially at work by leaning against counters, or walls as I work in security and they are barely tolerating the pain issues as it is.
I have found that exercise does help so keep up the yoga.


solanadelfina - May 26

Yes, I've had this one for a bit. My doctors had me get an MRI and other scans but everything was normal. Starting on amitriptylene has helped, and so has making sure I eat something every few hours. I also lean against counters at work and will grab onto bookshelves or sit a bit if need be. I notice it gets worse with stress, where I'll start to fall and catch myself on a wall or counter. (It did get some salesgirls at the mall off my back one day, though. :) Just be careful and take it easy on those days. When it's really bad, I try not to drive if it's not necessary or will pack my cane if it is. (Not the dolphin dagger one, the four-pronged one that's great for balance.)


Myriam - May 28

Hello there, I have issues with my balance but I also get very sudden and severe dizzy spells. As an example, I was sitting on the coach, upright and had a table in front of me. All of sudden, the table just seemed to be thrown away. I grabbed it quickly, thinking the whole floor was falling under my feet. My husband saw me and said nothing was moving(of course)! The second time, I was in the shower, washing my hair. I have a stand up shower and thank god cause I would of hurt my self. I had my eyes closed and I did not feel like I was moving or faling but my head just banged on the shower wall very hard. I was falling forward and could not tell! Balance is just as bad, so I know what you feel.


jrzgirl1 - May 29

I have that problem, especially when I try to dry off after a shower or get dressed


kentucky girl - May 30

I hadn't had any balance problems until this past week. I had gone for a massage and when I started to get off the table, I got so dizzy. The room was spinning. By the time I made my way home, I was naseauous and could not walk. I went to the doctor and he diagnosed inner ear problems. Gave me 2 shots and 3 prescriptions. He put me on prednisone for 7 days. It has cleared up the inner ear problem, and as an unexpected side effect, I have been totally pain free while I've been taking the prednisone!! Any one else had any experience with steriods?

I am going to discuss this with my doctor. I know steroids have some bad side effects, but I would be willing to take them if they kept the pain away.

Let me hear from anyone who has had experiences with steriods.

Kentucky girl


tnichel - June 3


where have you been my whole fibro life?! lol. I'm in louisville. I haven't read your post yet b/c I'm so happey to find a fellow sufferer in the the bluegrass state.

Ok, I'm back. Yes!!!!!! I love, love, love the steroids. They make me feel like superwoman but they are extremely hard on your body, kills your own immune system, and can make you gain weight. In fact, I just started back on prednisone for my lupus and yet undiagnosed immune condition that wreaks havoc on my body and only responds to steroids. Typically I stear clear of them until I absolutely have to take them.

You may have had some swollen passages thus why your doc put you on them. it's typically prescribed for severe sinus infections as well to bring down the inflammation. Tinnitis is common with fibro too. Do you have any other conditions?

7 days on steroids isn't that bad. My last stint was two months. I'll be on this round for a month. I won't even be able to look at a cinnamon roll or ice cream cone for fear of gaining 20lbs on the spot. lol.

Oh,I get dizzy spells too but mostly when I'm in flare or if I've overdone it for a day. I do have spells though there will it will last for weeks. Totally unpredictable but what's new.


kentucky girl - June 3


Nice to hear from another Kentucky girl. I used to live in Louisville, but I am now in Northern Kentucky.

Yes, I have other problems, but thank goodness I don't have any autoimmune diseases that have been diagnosed, although I've been tested for most of them. I also have IBS, muscle spasms not only in my back and legs, but also in my esophagus. In addition to the awful pain of FMS, I have severe sensitity to temperture. Mostly the cold and living in Kentucky doesn't help that at all. I have sinus problems and tinitus but have not had a lot of balance issue until a couple of weeks ago. I have depression periodically, but it's not debilitating.

I was diagnosed about 3 or 4 years ago after exhaustive tests to rule out every auto immune disease known to man. But in hindsight, I had some symptoms long before. It only surfaced after a trans-Atlantic flight to Scotland and spending 10 days touring the country. I thought it was jet lag and that I would recover. However, it did not, thus the testing and the final diagnosis of FMS.

Is your doctor a Rheumy? My PCP was the first to diagnose me, but I also saw a Rheumy. I am back with my PCP, one for convenience and two my PCP is really good and is not afraid to try new drugs.
So far, none of the approved FMS drugs have worked for me. It's really been trial and error see what may work.

It's good to hear from you, and I hope that we can get to know one another.


tnichel - June 4

dsm8122...sorry we hijacked your post! But I'm sure you understand. lol.

Kentucky Girl,

I am really sorry none of the fibro meds are working for you? How did you do on savella? I've had the greatest improvement on cymbalta...lyrica not so much. I don't know how you've managed to make it for 4 years without something. But alas, fibo sufferers are strong people. And it must have been horrible to come back from a wonderful trip only to find out you're suffering from something like this.

I have an internal med doc who is supposed to be my primary doc but he just doesn't get it and sends me home with antibiotics for a week even though it usually takes 2-3 weeks on them to get better. I'm looking for a family practice doc now. I see Dr. Neustadt in Louisville. We got off to a rough start (he's like 70-something and cantankerous as all get out! lol) but I think we're workion the same page now. He's all but admitted I have him stumped.

We go back and forth between sjogrens and lupus and possible something else. Honestly, I'm frustrated and just want some relief. I have ibs too and pmdd. But the rheumy says no to birth control pills so I just suffer thru it. Like you, in my 20's I was tested for everything under the sun. My docs are now threatening to send me to a urine doc and hematologist. (oh, joy!) I'm in love with my pain mgmt doc. He's been the most help in managing day-to-day pain. I get lidocaine shots in my neck and shoulders and it's wonderful. If you know of any good primary docs in louisville please let me know.

And yes, why do we stay in this state when the weather is always changing and the humidity is vicious? I still have figured out how you can be hot and cold at the same time. lol.

I hope you find some relief. Does your doctor think you should see another rheumy? And we'll definitely stay in touch here. I haven't had much luck finding a support group. I need one urgently as I feel I'm about to burst with so many emotions pinned up. It sucks to just randomly start crying at work..I usually hide in the bathroom til its over but I know its a result of not being able to talk out my feelings. It's been a crazy few months. This site is my saving grace!!!


kentucky girl - June 7


I don't want to exclude others on the board, but I am so excited to find someone in Kentucky and really close by.

Like I said before, I have now tried all 3 of the drugs approved for FMS; Lyrica, Cymbalta and Savella. The Lyrica worked for a couple of years although the dose would have to be increased every 6 months or so. It finally quit working all together. I tried Cymbalta, but the side effects were horrible and I chose to discontinue it. Savella was not effective at all and I couldn't see taking a drug and not seeing any benefits. So, until they come up with something else, I take Tramadol for the pain, plus vitamins. I have found that magnesium helps with the muscle spasms that I have in my back and legs. I also get tremendous relief from massage therapy. Of course, it's not covered by health insurance and it's expensive. I go about once a month. If I were rich, I would go more often.

Thank goodness I am retired and don't have to worry about holding down a full time job. There are some days I can't function at home and I know I could not function at a job!

I have a very good PCP who is very good about working with me to help control the FMS pain. He does everything the rheumy did and is a lot closer to where I live. Believe me, there are days where traveling an hour to a doctor appointment is out of the question. My PCP is 5 minutes away. At this point, I don't think another rheumy is in my future! I really believe that any physician who has an interest in FMS whether they are a rheumatologist, a PCP, an internist or other is just as good. It's all about trust, understanding and finding someone who is willing to work with you and find whatever works for YOU! What works for you is great, but it may not work for me.

I have found this site very helpful. Just having others to share your feeling with is great. There is no way that someone that doesn't have FMS understands what you are going through. I have stopped telling anyone about my FMS unless I know that they are a fellow sufferer. They either think you are whining and complaining about minor aches and pains or they think you are crazy!! That
s what is so great about this site, you get the proverbial shoulder to cry on, without judgment.

Hope your day is good and your pain minimal.


Fantod - June 7

Crestview Hills - Fibrofriends of NKY (Northern Kentucky)

Florence - Fibro Hope Support Group

Glasgow - FibroHearts

Lexington - iFOG of Kentucky - Lexington

Louisville - East End Fibromyalgia Support Group

Louisville - Informed Fibromyalgics on Guaifenesin, Louisville

Louisville - The Louisville-New Albany Fibromyalgia Meetup Group

Milton - Jefferson County Support Network

Paintsville - Tri-County Fibromyalgia Support Group

If you google any of these groups in Kentucky, you should be able to find them.


tnichel - June 9

Thanks Fantod. All of the one I checked into on the NFA are now defunct. But I also haven't check in a while. I'm not a good googler. ;)


New Friend - September 9

Hi there. Yes, balance is an issue with me. I am turning in to a clutz. I have fallen twice in the shower, bumped in to things...seems like every other day. And my associates 'tease' me about getting outta the way when I am around them. Though it's nothing to be considered funny, I have to make the most of it and sometimes it's with laughter since I have not seriously hurt myself. I pray I never fall and hit my head when I am alone, or ever for that matter.

I have had FMS for alomost 2 years and I am praying that it never gets worse, and that it has reached the 'top'. However, it did not start off really bad, so over the past 2 years it has gotten a lot worse.

I read all the comments posted for you before I decided to reply and it seems as if they all have a lot of good advice. Especially eating often to prevent getting dizzy. Which is my down fall.

And the steriod thing....I am not going back on then unless I absolutely have to. My poor feet can barely maintain the 40 plus pounds I gained. Yes, I totally agree that they can make you feel like super woman for a while. But the side effects out weigh the good for me.

I hope you can find some way to manage your issues. I'm just trying to find a way to 'live'. I can't take the pain on most days, but have to really sike myself up. I feel good to be able to share and read from this forum. YOU ALL understand. Most don't. And just a simple reply from someone who is in your shoes has made a difference for me.
Take care and God Bless,


RLFORTIN - September 9

YES. Prednisone helped my pain a lot but that also came with a lot of weight, I had to go off of it. It is the only pres. that I have taken that helped with my pain. You should not stay on it for long period of time either.
Good Luck!


Auvonto - October 18

i have some balance issues as well. it is horrible my husband makes jokes and i laugh cause he is only trying to help he knows making me laugh makes me feel better. but i hate it so much that i am like this. i dont even have to be moving for me to lose balance. one day my daughter had to walk me to the car she is 17 and i hated that she has to do that for me. glad she is there though


lucky13 - October 21

I just recieved a fibo magizine in the mail last week, from NFA I think. and there was an article in there that discussed a study done on fibro and balance. The results showed that fibro paitents suffered more balance issues then non fibro suffers, it also showed that fibro patients suffered more balance issues then the non-fibro elderly as well.

Another girl from KY here, and thanks Fantod for posting that info.



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