I was just wondering if anyone has experienced leg pain when symptoms first started to surface? Mostly in the morning after waking up, and then into the day after walking a bit?
It's not always painful at first. Sometimes it will just feel weak and very sluggish in the morning. Other times I feel discomfort and some aching sensations.
During the day if I have been active and walking or just moving about a lot my left leg (I haven't felt issues with my right too much at all) will just almost seize up in a way and not bend properly or straighten without causing pain, which makes walking very painful and tiring. I'm not sure if the discomfort is from the muscle/joint itself, or if it is from my other surrounding muscles working overtime to compensate in order to walk a bit better. I have noticed I get so tired when my leg starts to act up on me. :(
Also vision problems? I never thought I needed help from glasses but I believe I do need to get my vision checked. It is hard to focus and throughout the day (but not everyday it seems which is weird?) things will be a bit blurry making it difficult to read certain things.
Thank you for any help or insight you give on this everyone.
My leg issues were one of my first symptoms! It started off with a deep heavy achy pain and then transitioned to weakness and a weird knee popping thing when I walk. There's also muscle atrophy, which my doctor says is causing the knee popping out wheN I walk. It also gets VERY stiff (worse when I use it, as the day goes on) and no amount of stretching will help it.
I don't have many vision issues, but I definitely understand the leg. It's quite a pain
I have leg pain, but at night in bed. During the day it's not a problem. Taking magnesium, and using the exercise bike/treadmill help. Nothing stops it, but these things make it bearable.
Vision problems. Well yes. Apart from age related need for glasses for reading, and also reading music (two different focal lengths) and most recently glasses for driving which also helps when watching tv, I see double when looking sideways, and when looking at distant objects, I see things in a series of flat planes. Wearing glasses helps. My daughter informs me I'm seeing things like I would at a 3d movie. Most odd. Because of these changes I no longer drive in traffic. Fortunately I live in the country.
I have leg/hip pain early am when I am in bed.Goes when I get up into the wheeelchair.No longer drive and cannot walk at all . Do have focus probs and going to get two pairs of glasses today.Don't panic however vbecause all of us with Ataxia detiorate at different rates.
Yes, leg pain when I wake so cant have a lie in but eases when I stand up .
Dry eyes and flicker.. optician says cant help with flicker but dry eyes told me to ask gp from prescription 'drops' which come as tube of gel and help a lot.
I do not have any leg pain but when having an episode (I have EA2) it feels like someone poured sand in my legs when trying to walk. But I do experience vision issues a lot. The doctors call it nystagmus. I get it a lot and there is not much that can be done about it. It gets worse when I am tired, stressed or excited. Have to be very careful when walking. Do not drive when it is really bad. I find meditation and breathing techniques help. Get your vision checked and make sure you tell the doctor you have ataxia and are having vision problems. I wear glasses (bifocals) and the doctor said I will not get 20/20 vision with glasses because of the nystagmus. I do find when reading, and when the nystagmus is rearing its ugly head, that a pair of readers (strong ones) from the drugstore are better then my glasses. What type of ataxia do you have? Get your vision tested it will help you get some answers to your vision.
Dear Milk Tea, Leg pain...,yes, but I (due to my age-60-and previous cartiledge removal surgery in my left knee years ago) have arthritis in both knees. This definitely contributes to the discomfort/pain! Also, I think you're right on when you stated that the pain may be from compensating for the way you walk. I am very stiff and that must effect my muscles. I use my muscles in a different way to compensate for my lose of balance.This causes me to get very tired/fatigued. I exercise for strength and balance and do stretches, which helps me. Vision problems...,yes also, especially when tired. My vision, especially left eye, gets blurry. My ataxia affects the left side of my body a bit more than the right, hence my left eye. I use reading glasses, which help, when reading. ;o)
Most of the pains I have I can ascribe to other problems than ataxia, but lately I get leg tremors when I relax or go to bed. Sometimes my lower legs and back of hands crawl--somewhat like I suppose relestless leg syndrome feels. Lately my back hurts (or pinches). I don't know if this is due to a herniated disk which shows on MRI or compensation for other things. The vision problems are probably caused by nystagmus--both optometrist and opthmalogist confirmed I have this condition this year. It is compounded by allergies or weepy eyes which I never had before this year. It is accompanied by a drippy nose that no allergy medicine seems to stop and which gets worse when the north wind blows. Oh, the beauties of Ataxia!
Thank you ALL for the replies. It helps a great deal. I do plan to get my eyes checked very soon. Will set up an appt today actually. I'm pretty sure I will need vision assistance but perhaps not constantly.
I have heard and read that leg issues are first symptoms in a lot of cases, and usually one leg? For me its my left :/
Yes it is a pain.
runner said:
My leg issues were one of my first symptoms! It started off with a deep heavy achy pain and then transitioned to weakness and a weird knee popping thing when I walk. There's also muscle atrophy, which my doctor says is causing the knee popping out wheN I walk. It also gets VERY stiff (worse when I use it, as the day goes on) and no amount of stretching will help it.
I don't have many vision issues, but I definitely understand the leg. It's quite a pain
Yes I'm doing exercises in general to help, but maybe I should bike more? Would recumbent be ideal so to focus on legs exclusively?
Magrat said:
I have leg pain, but at night in bed. During the day it's not a problem. Taking magnesium, and using the exercise bike/treadmill help. Nothing stops it, but these things make it bearable.
Vision problems. Well yes. Apart from age related need for glasses for reading, and also reading music (two different focal lengths) and most recently glasses for driving which also helps when watching tv, I see double when looking sideways, and when looking at distant objects, I see things in a series of flat planes. Wearing glasses helps. My daughter informs me I'm seeing things like I would at a 3d movie. Most odd. Because of these changes I no longer drive in traffic. Fortunately I live in the country.
Thanks Marie, I'm trying not to panic. I just get concerned since I do not know how aggressively I will start to deteriorate. I am making sure to eat properly/nutritiously (since I have a history of not doing so) and I have appts set up for PT. ALso my boyfriend keeps reminding me that everything won't just start declining on me all at once/fast (I hope) and tells me to just focus on doing things to delay the deterioration.
Marie Turner said:
I have leg/hip pain early am when I am in bed.Goes when I get up into the wheeelchair.No longer drive and cannot walk at all . Do have focus probs and going to get two pairs of glasses today.Don't panic however vbecause all of us with Ataxia detiorate at different rates.
Once I get my eyes checked and see what is best for me I will remember eye drops. Thank you
Patsy said:
Yes, leg pain when I wake so cant have a lie in but eases when I stand up .
Dry eyes and flicker.. optician says cant help with flicker but dry eyes told me to ask gp from prescription 'drops' which come as tube of gel and help a lot.
I do have leg pain but not too bad, that is how it started for me now I have progressed to using a chair sometimes so I can make it to the bathroom in time as my legs stiffen up and hips and knees get too tight to walk. I am having issues with my eyes also and still drive but I must have sunglasses on or I have a hard time opening my eyes. One doctor prescribed eye drops 6 times a day and no help. It seems my pcp and neurologist cant understand why I would have eye problems. It could be nystigmus or blepharospasm but it seems like I will not be getting any diagnosis I guess. I go to a Parkinson meeting and met someone there that has the same eye problems and same neurologist and he has been on eye drops for 6 months and no help, he has to wear sunglasses all the time it seems. I have trouble watching TV or monitor and end up squinting after a few minutes.
I went to a Neuro-opthamologist.They check for eye problems so they recommended two pairs of glasses and an eye testc at an opticians.Some with Ataxia have severe eye flickering or Nystagmus.That is a different case and anyone with that needs to see an eye specialist for advice.All I know is that I have vision problems and Cerebellar Ataxia.Not sure if they are related.By the way I can see much more detail with the new distance glasses.
Dear Milk Tea, Anything you can do to be active (although difficult) will help with pain/stiffness! I go to a wellness center where I do weight machines, some for arms, some for legs. I also use the NuStep (works arms and legs) but sitting. which is easier for me. I also enjoy taking pleasure walks with my Access Active Rollator, as I can hold on with both hands and feel safe and secure. I've also used the warm water pool, as my balance is great when I'm in the water...,ha! (once I get my bathing suit on, which is a huge challenge, I'm good to go. I'm just trying to keep my muscles strong for however long is meant to be! ;o)
OMG. The vision thing comes back to haunt me. I didn't know it then, but that was my first sign. I wore glasses then, but realized that my vision was getting blurry. So I go to the optrometrist and get a RX. Get the optician to make glasses. They didn't work. Many arguments later, I discover that I had developed double vision.each eye was OK. They just didn't work together. Later, the balance and walk came out. And, still later, I discovered that vision, esp. double vision, is also an issue for ataxians. Yes, it will get worse. However,it can be corrected using glasses with a "prism". Check it out. ----Silky