20 replies to this topic

[pinkcloud]

Hi all

Me legs of late have been going into lots of spasm.

I was sent for an x-ray as they thought me toe was broken. It wasnt, it was rigid due to spasm

Now both of me big toes get stuck in the air - and cover the toes next to it. Me other toes crunch up and spasm underneath.

Me sci means I cant walk on me heels alone. So now I walk on the outer side of me feet and heels. I also get leg and toe spasms when I have full bladder and bowel. Or sit up. Lucikly they calm when I am lying down.

I got the fashion aspect sorted - red patent leather birkenstock sandels and snow leopard nail varnish

Now I just need to know how to walk without damaging meself further (I cant 'feel' any pain in me toes - me legs spasm and give way instead)but it cant be doing me much good.

Genuine responses only please. I am real upset with this problem and humour wont heal this one :-) thanks

[MTB John]

I think you would have a high risk of a sprained, or worse, ankle if you walked on the outside edge of your feet like that.

Do you ever use a chair?

Because I'm afraid that may be your only option..

Sorry..

[eyelookok2blindgurls]

One of my friends have the same problem ,they find soaking their feet several times a day and massaging their toes and soles of their feet helpful to some extent , I'm not saying it will work for you as everyone is different , but you could always give it a try

[pinkcloud]

Thanks for replying MTB John

I didnt think of that and come to think of it I didnt relate the aches in the ankle could be damage because I have damaged it.

I do have a chair, thing is I cant self-use it due to tear in rotator cuff of shoulder and extremely weak arms and part paralysis.

Not to mention I am in less pain walking than sitting - sitting is unbearable.

Ahhh heck,thanks for the warning. More adjustments to me life it is then Not going out is nothing compared to ending back in hospital so I'll hold on to being grateful for that

[pinkcloud]

Thank you mr eye look ok

I am extremely lucky I do have someone who is fantastic at massaging me feet and he likes doing it and although it dosnt stop the spasm it does feel nice and makes the pains of the leg spasms bearable. Does your friend still have the ability to walk? And how do they walk? And did the doctor know why it happens?

When I saw me consultant it was only the toes that curled under that was the problem. Big toe problem is new. At that time he said botox or tendon release may help. Tendon release - no way. Botox - yes when its available again. Has your friend tried these? Thanks in advance

Edited by pinkcloud, 11 April 2011 - 11:07 AM.

[MTB John]

pinkcloud, on 11 April 2011 - 11:06 AM, said:

Thank you mr eye look ok

I am extremely lucky I do have someone who is fantastic at massaging me feet and he likes doing it and although it dosnt stop the spasm it does feel nice and makes the pains of the leg spasms bearable. Does your friend still have the ability to walk? And how do they walk? And did the doctor know why it happens?

When I saw me consultant it was only the toes that curled under that was the problem. Big toe problem is new. At that time he said botox or tendon release may help. Tendon release - no way. Botox - yes when its available again. Has your friend tried these? Thanks in advance

Oh yeah, I didn't think about Botox. It could work for you. I have had it done a couple of times but did not notice much improvement. In discussing it with my physio later it sounds like the missed the spot and knocked out the wrong muscle..

Either way good luck,
J

[eyelookok2blindgurls]

pinkcloud, on 11 April 2011 - 11:06 AM, said:

Thank you mr eye look ok

I am extremely lucky I do have someone who is fantastic at massaging me feet and he likes doing it and although it dosnt stop the spasm it does feel nice and makes the pains of the leg spasms bearable. Does your friend still have the ability to walk? And how do they walk? And did the doctor know why it happens?

When I saw me consultant it was only the toes that curled under that was the problem. Big toe problem is new. At that time he said botox or tendon release may help. Tendon release - no way. Botox - yes when its available again. Has your friend tried these? Thanks in advance

My friend walks , but was stuck in bed for a long time before he started soaking his feet and getting them massaged several times a day , it took 3-4 months before it worked properly for him , I contacted another friend who is a walker , she is also a rehab surgeon who said that she would recommend the soaking and massage method before trying other methods , she also said maybe you could try blowing warm air on your feet from a hair dryer to dry them off before massaging them as it might relax them a bit .

[pinkcloud]

[quote name='MTB John' timestamp='1302560471' post='220260']
[quote name='pinkcloud' timestamp='1302519993' post='220173']


Oh yeah, I didn't think about Botox. It could work for you. I have had it done a couple of times but did not notice much improvement. In discussing it with my physio later it sounds like the missed the spot and knocked out the wrong muscle..


Thanks MTB John.

Yeap, thats the problem with botox, only so much to go around at one sitting. I chose to have it in the breathing muscles and all along the operation site. I just had a thought. Maybe its me muscles and nerves working differently after botox. I'll see what the consultant says next time.

Thanks for your time to answer

Thank you Me eye ok for asking your friends. I will definatley try the hairdryer. It may help with the purple feet and freezing cold trouble too.

Until then I am limiting me walking to see if the toes settle down.

[pinkcloud]

Update

I spoke with me consultant - its from overfull bladder and bowel - plus sitting and walking. Its from me back spasms. He said a fusion or tendon release is way forward. To reduce walking and in a chair is safe option. I do a mixture of the two.

I went and bought me some 'croc' sandals that seperate the big toe from the next toe, it works and they are moulded for the feet. They look real cool too.

Mr Cloud massages me feet more and this helps, but just in a feel nice way and relaxation way. He was scared he was damaging them at first as the legs kept jumping but after reassuring its ok, hes carrying on.

Thanks again all for your help.

Edited by pinkcloud, 17 April 2011 - 08:33 AM.

[MTB John]

pinkcloud, on 17 April 2011 - 08:32 AM, said:

Update

I spoke with me consultant - its from overfull bladder and bowel - plus sitting and walking. Its from me back spasms. He said a fusion or tendon release is way forward. To reduce walking and in a chair is safe option. I do a mixture of the two.

I went and bought me some 'croc' sandals that seperate the big toe from the next toe, it works and they are moulded for the feet. They look real cool too.

Mr Cloud massages me feet more and this helps, but just in a feel nice way and relaxation way. He was scared he was damaging them at first as the legs kept jumping but after reassuring its ok, hes carrying on.

Thanks again all for your help.

Glad to hear it was something relatively simple. Just a thought with the massaging. Lot's of movement of the toes may help too so have him wriggle then back and forth alot. I only suggest this as it's something my wife does with my hand and the fingers are starting to limber up alot more. I used to just stretch them alot but didn't see much improvement. The movement seems to be much more effective..

[Simba]

Hey Pinkcloud;

Sorry about your difficulties with the spasms and toes.

Keep up with the massaging and try to soak your feet and get them moved around as much as possible in the meantime. Problems with bowel & bladder can often have an effect on circulation, in most cases there will be a reduction in the blood flowing around and pooling in the feet. The discolouration & coldness in your feet seems to be suggestive of circulatory deficits in your extremities. If you are able to stand on a regular basis this will alo help with the circulation so keep alternating positions.

Anything that will enhance the circulation should be of benefit - heat, movement & massage to stimulate the blood flow.

The shoes are a good idea, it is very important to have good shoewear that really moulds to the shape of your feet and supports you in the right places - glad they are also ones which you like to wear.

Wish you well - keep us posted on how you get on.

[pinkcloud]

[quote name='MTB John' timestamp='1303076871' post='221593']
[quote name='pinkcloud' timestamp='1303029164' post='221485']

Thanks MTB John

I'll get Mr Cloud to try that. I felt so lost and alone but now feel so much better altough at the same time I wish you and no-one else had to go thorough this too. Any new discoveries you have please keep us updated

[pinkcloud]

Thanks Simba, you have helped me solve the purple feet mystery. Theres another post floating around on here about purple feeet, so if you could post in that, I am sure these people will be relieved to know this too. I have a neuropathic bladder and bowel so dont feel when I need to go - lucky I am not incontinent - It stays in there instead which out of the two choices I prefer this. I bet thats why me feet stab at the bottom of me feet too then - I bet its all related. I cant stand still due to unbearable pain, when I walk the feet either turn purple or the colour of a dead persons. Me pulses in me feet are good the doctor said - and you are right massage helps.

Thanks for posting, you are very clever and I am even more smiley today now for knowing this With your and MTB's help I think I may just save the NHS some money by them not having to wash up the surgeons knives and forks because I wont need an operation

[jules]

A friend of mine who is a walking quad had a type of guided botox, where they stimulated the nerve with an external electrical current first so that the injection is far more effective because it directly targets the correct nerve.

Other than that as everyone else has said massage is always really good. Out of interest are you doing anything about strengthening your arms up at all or having any treatment for your rotator cuff injury, the reason I ask is so that you could use a chair more and maybe take some of the stress off your body. A very awkward walking gait like the one you have described is likely to cause you more damage because you will shorten some tendons and put pressure on others.

Hope this helps

Jules

[Millard]

Hello PinkCloud,


When I started walking, my toes started hammering. This is when the toes pull under so I was walking on the end of my toes. I had all the toes on both feet fused in the first joint and that eliminated the problem completely. I remember how much it used to burn and hurt when I'd walk this way and I hope you get relief soon.


Good luck.

[pinkcloud]

Hi Jules

Thanks for answering me post, this news about the botox sounds fantastic and I will speak to me consultant about this.

Wheelchair, thing is sitting causes more agony as me stomach muscles and the large amount of bone around the spinal cord gets angry. On top of the rotator cuff repairs never repair and only get larger. Me arms are no good, and I gget numbness, nerve pain and clawed spasm hands too as well as extreme pulling sensation in me spine so manual chair is an impossibilty or else I would try this.

Yesturday I had to have absessed tooth removed with only little relief from anaesthetic as the LA didnt work. I managed to get up stairs with Mr Cloud pushing me. Me legs moved about 100 times a minute and the dentist massaged me leg - which shows how bad it looks (i also have lock jaw thanks to wisdom teeth surgery) i went downstairs on me bottom. Toes had major party and were rigid as heck. Stairs are also now a complete memory now too.

Onwards and upwards i go - oh and mtb john, mr cloud put heaters on me feet in the car and it helped soooo much - just like the hairdryer idea.

thank you all so much - i cant stress how much you have all helped.

[jules]

Oh my goodness, having a tooth pulled without anaesthetic must have been like torture you poor thing. My friend had his botox at Stoke Mandeville I will ask more details for you if that is any help.

Do you know why your arms are so weak and painful, do you have a syrinx and has it been monitored recently? I asked my trainer about rotator cuff injuries for you, have you had a surgical repair or not, he said that if you identify which part of the rotator cuff (it is apparently made up of muscles and tendons and quite a few of them) it is that is causing you the trouble you should be able to build up the others and therefore it might help with your pain levels and movement. He said the surgical repairs are very successful too if your shoulder is very unstable due to the injury.

I hope you don't mind me asking him, but I thought it might be helpful for you.

Big hugs and sorry you are having such a rough time.

[pinkcloud]

Hi jules

oooo it was real painful but compared to it being real bad two weeks ago, before i started on antibiotics, me pain levels had got stronger. I found clove oil helped, not lots but enough to allow me relief or 10 minutes, and as you know, to be out of pain, it sure is fsntastic

Thank you for asking your trainer. No I havnt had surgery, and its interesting to know about building up them muscles that are not affected. I wouldnt havr durgery as i really just wabt to be I also have paralysis in the left arm and even if surgery did help, it wouldnt cure this i was told. I used to have a large calcified lump that was broken up and massaged away and I got to make sure that dont happen again soon :-)

Edited by pinkcloud, 20 April 2011 - 11:55 PM.

[Simba]

jules, on 20 April 2011 - 10:07 PM, said:

Oh my goodness, having a tooth pulled without anaesthetic must have been like torture you poor thing. My friend had his botox at Stoke Mandeville I will ask more details for you if that is any help.

Do you know why your arms are so weak and painful, do you have a syrinx and has it been monitored recently? I asked my trainer about rotator cuff injuries for you, have you had a surgical repair or not, he said that if you identify which part of the rotator cuff (it is apparently made up of muscles and tendons and quite a few of them) it is that is causing you the trouble you should be able to build up the others and therefore it might help with your pain levels and movement. He said the surgical repairs are very successful too if your shoulder is very unstable due to the injury.

I hope you don't mind me asking him, but I thought it might be helpful for you.

Big hugs and sorry you are having such a rough time.

Sound Advice. Very important to build up surrounding muscles to help you maintain function while your body keeps compensation for your injured parts. I would definately pursue finding out which parts of your rotor cuff are damaged and working on exercises which will assist in supporting those parts and preventing yourself from further injury.

[Simba]

pinkcloud, on 20 April 2011 - 11:53 PM, said:

Hi jules

oooo it was real painful but compared to it being real bad two weeks ago, before i started on antibiotics, me pain levels had got stronger. I found clove oil helped, not lots but enough to allow me relief or 10 minutes, and as you know, to be out of pain, it sure is fsntastic

Thank you for asking your trainer. No I havnt had surgery, and its interesting to know about building up them muscles that are not affected. I wouldnt havr durgery as i really just wabt to be I also have paralysis in the left arm and even if surgery did help, it wouldnt cure this i was told. I used to have a large calcified lump that was broken up and massaged away and I got to make sure that dont happen again soon :-)

Heck must have been painful - clove is a wonderful natural antiseptic which promotes healing and is one of the best natural plant based substances known to man to use for tooth problems. Curious have you ever consulted with a neurologist? as the damage to your arm and loss of function sounds like it is a result of neurological damage and it would probably pay to have some input by one if you havn't already. Surgeons are likely monitoring your other issues like the calcification, the syrinx and the SCI but it would be very informative for you in terms of finding out what nerve damage there is and also in addressing physical rehabilitation and hopefully preventing further damage from occuring.

[pinkcloud]

Hey thanks Millard

did you find post-op the spasms in the toes sorted? And could you walk normally?

Thanks for the success story. If it worked for you straight away, maybe i have a good chance it may work with me late spasms and rigid toe. In this case I may just be tempted to have a go if the other alternative measures fail.

Thanks for sharing with ;-D