Balance Issues?? | Lupus Forums at The Lupus Site
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Balance Issues??

Discussion in 'Living with lupus' started by mea, Mar 24, 2015.

  1. mea

    mea mea

    Hi everyone, i'm wondering how common balance issues are with Lupus and figured who better to ask than others living with it.I've had a couple of bad falls lately and seems to me when the inflammation is bad around my neck and head area my sense of balance goes south.Sometimes I will find myself listing but other times like when I had my eyes closed washing my hair didn't know I was falling until I hit the wall.Saw rheumy yesterday and says wants me to see neuro again that specializes in MS...did this just over a year ago and he felt it was Lupus related.Odd thing is from the neck down my joints are pretty good right now so maybe just different type of flare?? Odd little BEAST you are lupus.

    Be well,Mea
  2. keebler

    keebler Moderator

    Hi Mea,
    We do have members with balance issues.
    You never know with lupus what it is going to do.
    It is good she is double checking with neuro.
    Take care,
  3. mea

    mea mea

    Thanks Lyn, hoping others will add how the balance thing comes about for them.For me I don't get dizzy,no spinning just if I look up like walking upstairs get kind of like a floaty feeling,using the handrail is a must same thing in the shower,have to make sure my elbow is touching the wall so I know where I am when I close my eyes....odd I know.

    Be well,Mea.
  4. debatat

    debatat Moderator

    Hi, I have trouble with my balance due to my neck and ears. Mine is from migraine and my arthritis in my neck so different to the cause of yours. I do get dizzy and fall and need to hold on to things. I can fall and stumble with no warning though! I have been referred for balance therapy which did help a little although as mine comes and goes it was a bit hit and miss. It may be worth a try though. Using a cane to help with balance is another tip. I have to wear sunglasses as the light sets mine off, I am off to pick a sunhat up today as my specialist said that may help as well. As mine is lupus related and any light causes it.
  5. mea

    mea mea

    Thanks for the input Deb,will keep this in mind.

    Be well,Mea
  6. lazylegs

    lazylegs Moderator

    Balance is a huge issue for me. In my case I have lesions in the part of the brain that control balance. Every year I get retested for MS but it always comes back to Lupus. I use several types of aids and exercise to help keep me stable.

    Take care,
  7. mea

    mea mea

    Thanks for sharing Lazylegs.

    Sorry you have this,makes you second guess every move.Glad the MS test come back negative,hoping mine do as well.So much crossover in these diseases , job for any DR. to sort it all out.

    Be well, Mea
  8. Merlot

    Merlot Registered

    Hi Mea, I hope your balance issues have improved by now. I just saw your post on balance problems and wanted to share my experience. I too went through a period of falls, using a cane, and going to physical therapy. It lasted almost a year. At the same time my ability to think and remember experiences went south. I actually had some episodes of complete memory loss. Short story, I was on Lyrica, which worked wonders for my pain and pins and needles, but went off it because much of my symptoms started during the time I was on it. Mentioned symptoms improved significantly after stopping it. They didn't stop overnight, but gradually. Even though I was on a low dose, I will never go back on Lyrica.
    God Bless
  9. wolf1

    wolf1 Registered

    Hi mea.
    I to have balance issues and have for many years. My resent fall was when I was in town, ended up in a basket of slippers lol. I was there for nealy an hour coz my legs would not move.
    Not every time is as funny as that but all I do is try telling myself( don't worry I'll be ok ). I sometimes feel like a pin ball. I was told by my specialist that Lupus can do this. It is very worrying but try and tell yourself the same, it may help in a long run.
    If you need to use an ade to help you to walk then do, I do.
    Keep safe.
  10. susane

    susane Registered

    I also have balance issues, and just thought it was due to some of my meds and it may be, but I also noticed that every time I go for my Rhuematologist appointments, he always ask me if I have fallen since I last seen him.
  11. mea

    mea mea

    Thanks guys,still waiting to see ms Dr.

    Balance issues seem to come and go,worst when the rest of my symptoms are acting up.
    Pretty sure it's related to the rest of the lupie stuff.I just pay closer attention when on stairs or in the shower, walking flat don't cause too much of a problem although doorways seem to keep getting in my way:oops:

    Be well,Mea
  12. debatat

    debatat Moderator

    Dorrways get in my way too when I am bad! Constant bruises :rolleyes:
  13. tuffymason

    tuffymason Registered

    Hello everyone, this is somehow comforting to hear??? I have a real problem with this now. Has been for about a year. You know with all lupus is capable of, and all this time, I still seem to second guess my symptoms as "just me". I was just going to post about it. So sorry you are experiencing the same.
    After losing my brother in a terrible accident on the family farm about 2 years ago, then all the estate matters and paperwork, I finally crashed last September/14. I have not been well since. My neck, head face and eyes are affected which is the cause of the loss of balance. When I turn my head in bed I go on a wild ride inside my head. It was terrifying at first but now it's just a big problem. I find too that I cannot look at my computer screen as it makes it much worse fast. I also have a terrible time with sun in my eyes. The sun is no longer any kind of friend to me. The entire ordeal makes it so I can't, or won't drive, I avoid reading, my TV brightness and contrast is turned to almost black. I also have a terrible time with fatigue. I just can't sleep away the tiredness I have. This past week I gave up and used medication to help me sleep for three nights in a row from about 8pm til morning and then yesterday I decided to "sleep it off" and slept most of the day, hard. And here I am after a good nights sleep ready to fall asleep again. My eyes actually hurt, the muscles and my head feels like it is swimming. Sure wish I knew what to do as this has really taken my life away, pain I can live with but this is not something one can just rise above. Such a pain. Sandra
  14. keebler

    keebler Moderator

    Hugs Sandra,
    I think it is nice to hear what people are dealing with. It makes a person not feel so alone, knowing that someone is struggling kinda helps in away. Sometimes you can even get some pointers what to try to help with the symptom.

    Im sorry you are having such a tough time of it all. Stress and lupus do not mix. You have had to deal with so much, my heart goes out to you. Has your rhumey been of any help?

    Take care,
  15. debatat

    debatat Moderator

    Sandra, is your balance bad any time you turn your head? Or all the time? You should see your doctor about this, there are exercises they can give you to help combat the dizziness. Part of it is retraining your brain. You can buy glasses to view the tv and read with if you speak to your optiician. There are also meds you can take. It is hard to deal with, so you have my sympathy.

    Take care.
  16. tuffymason

    tuffymason Registered

    Thanks so much, as per usual, I have learned. I will certainly ask about the glasses thing. I have a hard time getting into my rheumy, I was supposed to see her in three months, as she knows things are not so great, but that was for July and as of yet I have not gotten a call for an appointment. This problem is a miserable one, I just get so hot, not just warm hot but burning hot. My head feels like it is being compressed inside and I just want to fall asleep. I know the sun is not good at all for me but what is a person to do? I have to go to get groceries, and visit friends, I like to try help cut the grass, but I am afraid that is where my biggest issue is. I always keep trying as I believe Lupus will take your entire life if you let it. Silly thought as if I am to determined, it might! Thanks for the support. Sandra
  17. debatat

    debatat Moderator

    Have you tried a cold flannel on your forehead and on the back of your neck or if you can stand it an ice pack for a short while at the back of your neck? Just at the top of the head, it gets very hot when you are having problems and if you cool it down it helps.
  18. tuffymason

    tuffymason Registered

    Yes, I have several ice pack I use. Mom made me years ago. Way before she got sick even. She passed in 2010. It is about 3 ft long and sectioned, heavy, it has some kind of seed in it and it holds the cold for a long time, better than any commercial one I have found. I can often fall asleep only because of that cold pack. I would like to open it a bit and peek at what seed she put inside to have a couple more made, but it would be like poking my Mom! LOL! I am sure she is very proud now, in heaven, that she knows just how bad things get for me sometimes and how much she helped by making e that cold pack. Thanks, Sandra
    P.S. the family farm is doing great, we renovated it into the prettiest little country home ever, not pretentious, just so homey and comfortable, and we took in our first cutting of hay, it was beautiful, we hired the work out and just sold the bales to a horse lover in the neighborhood at a cut rate as hay here is at a premium and regular horse lovers can't afford to pay what the large operations can to feed their loved pets. Payed it forward, my brother would have done that. We are having a memorial tree planting on August 1st, my brother planted 6,000 trees on the farm, one of the only farmers in our area that actually plants trees instead of clear cutting them. The community is invited and it will be wonderful to have everyone there to celebrate how lucky we were to have him in our lives, and that we care for his beloved family farm and green space as we cared for him, and still survive. Well physically so far, but some days somebody please tell my heart!
  19. lazylegs

    lazylegs Moderator

    Sandra sometimes you need to hound the doctor's office to get the appointment you need. There may not be an appointment but ask if you can get on the cancelation list as you are suffering.

    Congratulations on your renovation. It sounds wonderful.

    Take care,
  20. tuffymason

    tuffymason Registered

    Finally saw my rheumy today, she is so great, and I am so thankful. I explained everything, different than before as I used to only talk about the tip of the iceberg, I used to think she would think me a hypochondriac. She said, ho how are you doing?....I smiled and said that's a loaded question ; ) she laughed... I said today is pretty good, I am thankful, and happy to be out....(even though I was buried in sunscreen and my UV hat and coat and glasses, really hot here....then I told her what I had told all of you,
    I told her as much as I would like to dismiss the idea I think the sun and I no longer get along at all. After our talk she said that she would like me to take more pred. It is what I had to do on my own a few weeks ago, I was that bad. So she said in the summer months, to do 15 mg for a week then 10 mg for a week and then my reg dose of 7.5 of a week, and then to start all over again. I am not thrilled but I think she is brilliant and I know in my own self that is the right thing, only pred is a difficult drug to live on for me. First it's like a honeymoon, then after a few days honeymoon is over, and it's like I will come right out of my skin, jittery, feel too fast if you can get that description, then the insomnia starts, terrible to be the only on awake in the whole wide least it feels like it....can't watch to much tv because my eyes hurt.....Lupus is a terrible hard to live with....just so darn close to well but then, not at all. : ( thanks, Sandra

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