Chris I just wanted to offer two suggestions which help me… in case you may want to try them. I definitely have issues with muscle spasms in my calves and other area. Many years ago I found a product it is made by Swanson and it is called magnesium oil. I’ve been buying it off of Amazon Amazon many times. It is like $10 a bottle and a bottle will last a long time. I just spray it on any place that I am feeling pain or spasms. Nothing last forever but at least for me it cuts the discomfort level. Another suggestion, I have issues with walking and I have found that it is much easier for me to walk with trekking poles then it is with one stick or cane. Offers me better balance. Happy to see that you are getting to enjoy the warm weather! Have a great week!!!
Thanks so much for your advice, I'll certainly have a look at these products, particularly the spray. My balance and walking is dreadful at the moment. I had my review with my neuro and he wants to do an MRI of my head and spine just in case. This will then give me closure and help me accept my diagnosis, then hopefully can move forward. I hope you're coping well? Chris x
@@ChrisCFNDjourney I hope your MRI goes well Chris and that perhaps you can find balance solutions. I have an awful time with walking because both my knees are bone on bone arthritis so I don’t walk too far for this reason. But I do have a little foot cycle that I try to do every day so I put my timer on and some music on…have an App that measures my steps. Some days I might make 3000 steps and maybe the next day I barely get to 1000 or I do zero steps. it’s always a surprise as I am sure you have found out with FND. One day I have the shakes so severe in my face and neck and arms that I worn out just with the shaking. My balance is atrocious but I am 75 years old so perhaps that arthritis has something to do with my bad balance.
I'm having a spasms in my legs really bad. It looks like I am doing the gig. They want to see if I can get a glider walker with a seat. This flare up is kicking my butt. Keep your head up.
Hey, so sorry to hear you're having a tough time too. It's all about digging deep and just taking it a day at a time. I've just over done it again today and I know I will suffer even more tomorrow. It's so hard to pace yourself when youre4 used to being so active. Keep pushing and reaching out 😃
My walking deteriorated also over a time of a year or so. Use an aid to help you conserve some mobility. Don't fight it, it makes it worse. Sending you good vibes and thanks for the videos ❤
Thanks for the advice. It's so good to be able to speak to others who are suffering. I love making the videos. Will continue to do so. Thanks. Hope you're well
@ChrisCFNDjourney thanks for your kindness. I'm doing ok on the roller coaster 🎢 of FND symptoms. Please keep talking to others with FND, it really helps to know you're not alone. I run a peer support group at the Brain & Spine Foundation in the UK. You'd be so welcome. Enjoy the weekend, keep cool. Temperature regulation of the body sucks with FND!
The spasticity is constant and painful now. Any neural input that the body doesn't know þhen I have spasms. I keep walking with my walker as slow and difficult as it is, rather that than in a wheelchair permanently. You are doing well. Don't give up.
Super bad day today all hyped to get out in sun same as you back spasms legs knee flicks and slow walking of you could call it that got very emotional also when I did make it back to the car !!!! What do u say to people that stare!!!!!
It's so tough when people bloody gawp! Some people ask and say it looks painful and I just say yeah. Tbh, people will look so I am getting used to it. Owning my cane now though...... 😀👍
Chris I just wanted to offer two suggestions which help me… in case you may want to try them. I definitely have issues with muscle spasms in my calves and other area. Many years ago I found a product it is made by Swanson and it is called magnesium oil. I’ve been buying it off of Amazon Amazon many times. It is like $10 a bottle and a bottle will last a long time. I just spray it on any place that I am feeling pain or spasms. Nothing last forever but at least for me it cuts the discomfort level. Another suggestion, I have issues with walking and I have found that it is much easier for me to walk with trekking poles then it is with one stick or cane. Offers me better balance. Happy to see that you are getting to enjoy the warm weather! Have a great week!!!
Thanks so much for your advice, I'll certainly have a look at these products, particularly the spray. My balance and walking is dreadful at the moment. I had my review with my neuro and he wants to do an MRI of my head and spine just in case. This will then give me closure and help me accept my diagnosis, then hopefully can move forward.
I hope you're coping well?
Chris x
@@ChrisCFNDjourney I hope your MRI goes well Chris and that perhaps you can find balance solutions. I have an awful time with walking because both my knees are bone on bone arthritis so I don’t walk too far for this reason. But I do have a little foot cycle that I try to do every day so I put my timer on and some music on…have an App that measures my steps. Some days I might make 3000 steps and maybe the next day I barely get to 1000 or I do zero steps. it’s always a surprise as I am sure you have found out with FND. One day I have the shakes so severe in my face and neck and arms that I worn out just with the shaking. My balance is atrocious but I am 75 years old so perhaps that arthritis has something to do with my bad balance.
I'm having a spasms in my legs really bad. It looks like I am doing the gig. They want to see if I can get a glider walker with a seat. This flare up is kicking my butt. Keep your head up.
Hey, so sorry to hear you're having a tough time too. It's all about digging deep and just taking it a day at a time. I've just over done it again today and I know I will suffer even more tomorrow. It's so hard to pace yourself when youre4 used to being so active. Keep pushing and reaching out 😃
My walking deteriorated also over a time of a year or so. Use an aid to help you conserve some mobility. Don't fight it, it makes it worse. Sending you good vibes and thanks for the videos ❤
Thanks for the advice. It's so good to be able to speak to others who are suffering. I love making the videos. Will continue to do so. Thanks. Hope you're well
@ChrisCFNDjourney thanks for your kindness. I'm doing ok on the roller coaster 🎢 of FND symptoms. Please keep talking to others with FND, it really helps to know you're not alone. I run a peer support group at the Brain & Spine Foundation in the UK. You'd be so welcome. Enjoy the weekend, keep cool. Temperature regulation of the body sucks with FND!
@@chantelle1654always had temperature regulation ling befor fybromyalgia fnd symptoms found out it's part of autism ADHD
I kept walking through it and ive got a bad knee now, so do be careful. The cane helps
Hi, this is what I'm worried about. I feel knee pain on the compensating knee. Will use my cane in weekend I think. Thanks
Do you have hypomobility that's what did mine
The spasticity is constant and painful now. Any neural input that the body doesn't know þhen I have spasms.
I keep walking with my walker as slow and difficult as it is, rather that than in a wheelchair permanently.
You are doing well. Don't give up.
@@jillsawyers8675 what does not mean neural input
I have find too and I can relate also I've been subscribed since march and I have a RUclips channel too can we be friends
Super bad day today all hyped to get out in sun same as you back spasms legs knee flicks and slow walking of you could call it that got very emotional also when I did make it back to the car !!!! What do u say to people that stare!!!!!
It's so tough when people bloody gawp! Some people ask and say it looks painful and I just say yeah. Tbh, people will look so I am getting used to it. Owning my cane now though...... 😀👍
Also, really sorry to hear you're having a hard time. Hopefully just a flare and you'll recover soon