I was wondering does anyone have problems keeping their balance??? I am finding that my ankles are very weak and I have trouble keeping my balance…I was starting to fall and I could used to stop myself but I tried no use…I fell all the way down and skinned my elbows even…I am wondering if this is also a symptom???
Hi,
I have trouble with my balance as well, especially when I have been feeling my worst. I have trouble regaining my balance because the pain is just terrible when I try to do so. I’m sure it is a symptom.
I was hoping that I was just having a bad day but it keeps happening…I have horses which I used to ride but for the last two years I have been unable todo so…Today I went to grooming them and I think I over did it.I stayed three hours which was not long enough but I couldnt do any more…I had diffuculty getting back to the vehicle and my husband had to come and help me…I wish this had never happened to me…I hope it can get better…I miss my horses and the freedom of a good trail ride…
I’m so sorry you’re having so much trouble spending time with your beloved horses. I understand how frustrating it must be. I am a horse lover too (one of my horses lived for 33 years and I had her for 31½ of those years, hence my nickname) and I know I just couldn’t handle caring for a horse now.
What you’ve described sounds like how I can get when my episodes of weakness and fatigue come on. I can be having one of my better days and bam, it will come along debiltate me for however long. We don’t have a car and walk everywhere in town. It sure can be tough when it happens and we’re out and about.
My balance is a little off all the time. I can be just standing and have to grab onto something, because I feel like I’m falling. Then when the weakness comes on, I get really dizzy and my balance is terrible.
If I wasnt depressed before DD I am heavily depressed now…It sounds funny but my horses are like my kids and I miss them…I have a tuor in my foot so after 3 hours of standing I was not only weak but I could barely walk and I couldnt catch my breath and I had major pain in my chest(where I have some lipomas) and my stomach where I have some also…I often feel like what did I do to deserve all this happening to me…I have been having these problems since 1999 and now I know its all DDs fault…
Hang in there. We’ve all felt the same. You have to concentrate on today only, just one day at a time, or we’d all go insane. Try to find some good and not concentrate on the pain, which makes the pain only worse. Keep your mind busy, even if it’s just crossword puzzles. Time to try a new hobby you’ve always wanted to do. Just keep busy and do not give into the pain, believe me I know it’s hard.
I fight every day. As we all do.
I definetely have problems with balance. I thought it was just me, or maybe the pain killers I’ve been taking for 3 years now. Sorry, but nice to know i’m not alone in this. I’ve mentioned to my doctor before, and he blew it off to the drugs too.
It’s a battle for me every day not to give in to this disease. It sure knocked the wind out of my sails after I was diagnosed last year. I felt so hopeless and scared. I am so thankful for my kids, ages 3 and 6, that keep me striving for more.
I used to think I would try so save up my engery for a special occasion and it just doesn’t work. If I going to have a bad day, it happens no matter what I do or don’t do. Now if I feel well, I go for it and do what I want or can and if I’m feeling bad, I try to rest. Sometimes that doesn’t work out, though.
I have foot pain, too. It varies from the whole soles of one or both feet feeling like they are totally bruised, to just one area of a foot hurting, to the tops being so sore and swollen, to having terrible stabbing pains in the bottom of the heel. Yikes.
Hi, I have had a problem with balance for years on and off.? Sometimes I seem to be listing to one side.? I am always stubbing my toes and from time to time I have run into the door frame.? It is odd that much of the time I am fine with balance but when I am off I am off for a period of time.? Sometimes I tend to be dropping things a lot.
Joan
I’ve had balance problems for years, too. And like others, I’ve often dismissed them as side effects of meds, which, I’m sure at least contributes. But the smallest things can make me dizzy, like turning my head too quickly, or looking from light to dark an vice versa.
I wonder at times what causes the dizziness, then I tell myself I probably don’t want to know.
I’ve fallen several times over the past 6 years, and before that, when I had no clue about Dercum’s. Having a diagnosis explained so much about so many things from at least 10 years before that diagnosis.
me< (aka Cindy)
I thought I had an inner ear infection because when I laid down and got back up I was so dizzy I threw up…and sometimes I just feel dizzy…I started falling in 2001 when I was at work…It was like my leg locked up and I couldnt stop from falling …Its worse now…I just thoufght I was clumsy but it must be due to DD as I dont take any meds for pain…Im trying to avoid it…I take enough stuff…
I have had balance problems for many years, long before the generalized myoclonus or DD tumors were evident. Just walking along and then bam! suddenly I was down on the ground without any memory of how I got there. Neurologist at that time said “isolated incidences of disequilbrium” which subsequent neurologists have said isn’t a “real” DX. I have to use a cane or I fall - alot. Don’t know if it was DD related then but weakness in legs/ankles with neuropathies now are definitely DD related.
Benita
I can’t walk on uneven ground…like a sports field…and this is when I was still trying to walk more. My ankles are very weak. I get a hot red spot on the bone on the outside of my ankle. I can only wear Easy Spirit API shoes now and I get them two sizes too big as I swell during the day. I take the laces out of a pair and use them for slippers. They are very soft and I use extra soft insoles. I have to hold on to someone’s arm for support of use a walker when my feet are really bad, which they will be soon as winter is coming to Ohio.
The same thing happens to me…I cant walk on uneven ground either…I sometimes feel that my ankles are giving out too…my feet are bad about swelling but if I wear shoes that are too big on the days they are not swollen I have more problems walking so I just wear my shoes …the marks they leave when I take them off eventually go away and I would rather be steadier walking…
I wear Payless’ version of crocks. They are very soft rubber. Other knock-off are too hard. I have tumors on the soles, sides, and tops of both feet now, and can’t walk in anything else. Sometimes I need a cane to walk. I can’t walk on uneven ground either.
I wanted to add that I had a MRI of my one ankle and the report said it consistent with a badly sprained ankle…swelling of tissue, ect.; however I did not sprain it…it is always like that. I’ve had to wear a cast shoe off and on and use the walker, elevate and use ice bag. Treat it just like a sprained ankle and it feels like one, but keeps coming back. Sometimes really bad then not as bad. My ankles take turns, usually not at the same time. My big toe joint hurt and got red, I got a cortisone shot and it got better. Now, tlhe other big toe joint is red and painful. This would almost be funny if it was not so sad. It sounds like we are complaining about a million different aches and pains…but I really think it is all part of the same disorder…whatever the heck that is! Anybody else have red palms? Mine turned bright red when this started 40 years ago and have been red since. If I use my hands like to stir dough, they ache and hurt and I have to stop.
Hi ladies!
Haven’t posted in a while on this site but have been lurking and reading all. Just wanted to let you know that I have swelling of the top of my feet, ankles, calves and to mid-thigh. Now the top of my feet have a red area, then it ends and its very white with black spots in some areas (damaged) to just at top of ankles then the front and sides of calves about 3/4 way up stays bright red but not the back of my calves. I’ve had venous ultrasounds but blood flow is perfect. Where its red some times it itches horribly or burns like acid has been poured on it. They can’t figure out what’s going on - so chalk it up to another DD symptom. My whole leg feels weak, my lower back hurts terribly (lots of new tumors/tissue there) which makes it hard to walk in addition to balance problems. Just got a rx from dr today for wheelchair but am only suppose to use when I’m at my worst b/c he doesn’t want me to get more deconditioned than I already am.
Geez, I need to loose weight but no matter what I do I keep gaining. I’m going to be as big as a whale in another year if something doesn’t change! Oh well, I’ll be a whale with one heck of a good sense of humor.
If they ever find out what’s happening with my legs, I’ll let you know.
It sounds like you have some of the foot pain that I have with the redness. I use ice bags where I lie on my side and my husband puts it on with a wet towel underneath for about 15 minutes at a time. I also use a very powerful foot massager that shakes even up my legs. I can hardly stand it at first but if I rest my foot on it lightly it helps for awhile. It makes the blood flow in my feet .I don’t know if the problem is due to diabetic neuropathy or DD. They have some really powerful foot massagers on the web now.
I, too have had balance problems, I can never just get up and start moving, I always have to stand slowly and get my bearings then I move, sometimes I fall anyway. I really have to go slow on stairs and I always have to have something to hold on to or I will fall on my face. I have done that for years and thought I was just clumbsy. My family has made fun of me for years, I have bad depth perception I hit corners tables you name it I have run into it and I have a lump for every one and then some.
The more I read on this site the more I start to put together the earlier years that I had problems but never knew how to identify them. So as all comes together in my mind I have had this DD all my life. I just have forgotten a lot of it. I can’t remember time frames mostly when this or that problems started. I have started a journal on paper to help me with that as well as the online journal, I have to admit its easier to type it than hold a pen and write, my attention span is to short I forget stuff before I can write it down.
I am gong to have to break down and buy myself a cane. I can barely get out of my car now. I just feel strange about it.
GOD BLESS EVERYONE!!!
BRENNIE
Brennie:
I’ve had to use a cane for years now due to balance problems and falling. I love my cane, it is so beautiful. I said that if I was going to have to use a cane, then it was going to be a pretty one. I believe the web site is brazilian-walking-sticks.com (or something like that), I’m sure if you did a search you could find it. I paid $40 or so but it’s been great and very, very strong. I’m thinking of getting another one to keep in my car.
Benita