Nerve Pain and Kay Walker

[Grapes12]

Hi guys,

I have lost the ability to walk over the last couple of weeks due to my ataxia increasing and making it unsafe to walk I just wobble and fall; standing up is hard enough. So I have been using my wheelchair as my crutch is not giving me enough support. I am hoping that a Kay walker will get me back on my feet? and will be the extra support I need. Do any of you use one or been in a similar situation as myself?

Today I went to see a neuro podiatrist and Physio and with two physios supporting me like a frame I managed a few steps. Very uncoordinated and my legs kept going into spasm. Do any of you have splints/braces etc that help with spasms etc?

But my other questions is I am now in so much pain in my legs; definitely nerve pain. My right foot/leg is on fire! Its almost like its upset my nerves. Has anyone else suffered from this? I want to get back on my feet but don't want to be in so much pain I cannot do anything. I will add that I have been standing up everyday and sliding my legs along the floor in a sideways motion (as Physio suggested; trying to step sideways but with support from the work surface) and loads of Physio and an exercise programme.

Thanks in advance

[anihol]

I use gabapentin for nerve pain if that helps.

[Grapes12 in reply to anihol]

Thank you. I am already on Gabapentin.

[Legs-alive]

I have CA & also suffer with Peripheral neuropathy, the pain as you say us unbearable at times do I get exactly where your coming from! I take pregablin(lyrica) 300mg x2 daily plus 75mg if amitriptlin before bed, I’m also on 70mg morphine patches & take oromorph as & when needed. I was diagnosed with the nerve disease 10 years ago so has got worse & more painful as the years have progressed. I’d advise you to go see your gp if your not seeing your neurologist first & get in some medication for the pain. Best of wishes to you

[Grapes12 in reply to Legs-alive]

Thank you so much. I don’t have an exact diagnosis so I’m not under a neurologist as they discharged me! I’m so sorry to hear you are going through the same; the pain is awful. It’s been under control until yesterday but I got no sleep due to the pain.

Thank you for the advice x

[FFNick]

i am not a GP but I notice you are not taking Baclofen. I take this to stop the spasms hurting, it does not stop the muscles cramping just make them bearable. Health professionals were concerned about the side affects.

I also use a 4 wheeled walker as balance is too challenging. My next move is a wheelchair which will double as a walker. As I am very tall I use a Topro Troja.

And place a washing up bowl on the walker to carry things.

All typed using keyguard keyboard.

[Grapes12 in reply to FFNick]

Thank you.

[Hidden]

Hi I'm just wondering how it progressed for your walking to stop, my legs have been weak on and off for years for example I went for a walk and my legs felt weak like I was going to pass out. Right now they feel weak and I do t want to get up because this weak feeling hurts.

[Grapes12 in reply to Hidden]

I'm sorry to hear how you are feeling. I went from walking with a walking stick to needing a crutch as the ataxia got worse. It has now got to the point where I need a walking frame I think as with two people supporting me like a frame I can manage a few steps as that takes care of my ataxia and keeps me upright. As I have't been able to get one yet so I have had to start using my chair full time; as I just keep falling without any support and cannot get around. Hope that helps. Its not so much my legs have got weaker; they have but the main thing for me is an increase in ataxia and my dystonia has got worse which means the spasms in my leg are also not helping me to stay on my feet.

[Hidden in reply to Grapes12]

I got dystonia to, it hurts like surgery with no meds, when it happens my foot turns inwards. The reason it isn't as painful is because I have a Vegas Nerve Stimulator, it's ok I have to learn to cope with it thanks for your reply.

[Hidden in reply to Grapes12]

I concentrate on the walking part, maybe because the Cerebellar Ataxia has destroyed my brain, I'm well with a device. Without it Its like I'm mentally challenged and trapped in a body I can't come out of.

[swtb]

i had peripheral neuropathy (nerve pain) for some time with ataxia. i went on a clean ,(organic) whoe foods diet, with lots of supplements, (look at sunvox' well researched

posts). Increased magnesium for muscle cramps, and I also do a daily juice cleanse and heavy metal detox. My neuropathy is 98% healed. My cane wasn't enough stability, so I now walk my dog with my baby jogger stroller for stability.

You can get there . Stay positive.

[Grapes12 in reply to swtb]

Thank you.

[KiwiBob]

Hi, I am having lots more bad days than good days.

I am having to hold onto someone and use my walking stick.

I am also getting pain in my knees.

I have been better the last two days, was able to go for a walk and go into town.

The town took its toll on me.

Most of the time I am house bound. Do what you can when you can.

All the best 😀