Foot giving out

Stacey, Congrats on the house sale!!:) That is really quite a feat now a days!!

I have experienced the same thing with my foot, only mine is the right, which is my weaker side. I feel mine is connected with my increase in fatigue, weakness, footdrop and pain levels. I have been using a new lotion on my feet for the last 3 days, its made by Burt’s Bees, It has peppermint in it, and so far soo good-on both tops and bottoms of my feet. With you getting another ivig treatment, you should notice if its better afterwards or if its the same. Then you’ll know for sure if its related to cidp or not. I don’t get ivig so I can’t say for sure it is or isn’t related. Its a new symptom in my opinion. I hope your ivig helps. Take care.

I’ve rarely had instances such as yours? But, I have had a few spooky ones? Where I get up and it’s just like the foot isn’t THERE! As in dissolved…Needless to say, the ‘going down’ is inevitable? I didn’t have any ‘pain’ until after I’d fallen and fractured things…in more than one place.
It’s all, [pardon the pun?] very unnerving!

Just always keep that cane or walker handy for when you REALLY need it!

Hoping that your house sale goes smooth as silk with no wrinkles! You deserve this break for sure.

Your rash does sound like the ‘puritis’ or ‘hives’ type reaction that can happen with some IVIG infusions? Look up your brand’s ‘prescribing information’ and at the ‘lesser reported’ events. It does happen more than is reported. So take a look and decide whether you should report it? It DOES itch like crazy, doesn’t it?

Good heart thru your next stressful days!

sorry no info

Stacey,

I have had hives in the past- violent itching hives. However, mine are brought on by the cold. When my thighs and back area get cold, I break out until I want to scratch myself raw! I encourage you to be observant if anything brings on the rash- temperature, stress, overdoing it… Benodryl usually does the trick once it kicks in. And of course, not getting too cold.

As far as my foot, my left foot- it becomes incredibly numb to the point where it seems rubbery, especially in the areas you mentioned. I don’t have pain when this happens. (Although when I overdo it, the bottoms of my feet feel like I am stepping on nails.) I fell one time down the steps in the middle of the night because of my numb left foot. That woke me up the rest of the way really fast! That fall made my wife make us sell our quad level house to a ranch. So, I rarely navigate stairs anymore.

The numbness in my left foot comes on more if I spread out the IVIG too long. It almost feels like I am lifting a weight.

Not sure if this helps in the least! It is a frustrating “syndrome.” Congrats on your house sale! We had lots of friends and family help us move. I hope you have that support to keep you less stressed out! Don’t be afraid to ask and accept help from them.

And Cheryl, if you are reading this, does the Burt’s Bees help ‘relieve’ the numbness?

dennis

stacey,

I am with you. I get mine right in the bend, the top of the joint between the tibia/fibula and the ankle. I get a really sharp pain, very intense and very focused. It makes like my ankle/foot will totally collapse and fail. I grab onto things and hope I don’t fall.

As I think about it, I think it occurs more often later in the day, and following days when I do too much. Not completely sure though.

As to a cause, I would guess that as muscle groups fail to respond properly, the moving action fails to work. Maybe in your hand it would be a big twinge and you drop something. Being in the foot with weight bearing issues, the outcome could be much more disastrous.

I don’t really know, just my best guess. The cure would be what we all know, rest more and don’t stress the body. The more stress, the worse we do.

Good luck
Dick S

Thats exactly the spot that started all my trouble. I started having pain and weakness on the top of my right ankle (right where the foot and leg meet). That eventually led to numbness and scar tissue then surgery to remove the scar tissue then more numbness etc. The beginning of my long CIDP journey. Now I get a return of those symptoms when I am tired, when I have been sitting with my legs at a 90 degree angle (puts pressure on peroneal nerve), and when I sleep really deeply and don’t move my legs enough. Sometimes it feels almost like a sprained ankle, other times like it did shortly after the surgery. My neuro says its because the nerves don’t work as well so the muscles work harder but not better and thus get tired more easily leading to weakness. And it’s a tough joint to have problems with as it bears a great deal of weight and has a big range of motion – more ways you can stretch and tear things and more pressure to do the damage. And then because there is a range of numbness I might not feel that I have done damage, or put my foot down wrong twisting it etc.

Or maybe we’re just getting old? 😉

Stacey,

Steps make it so much worse for me. I can just about guarantee for the feet to fail me if I do steps. I think it is the strength needed to push my body up, or the resistance needed to cushion the step down. Either way, it is elevators for me all the time now.

My neuro told me when he diagnosed me in late 1999 that I probably needed to change professions, I was a Golf Pro, worked 60+ hours per week, ran all facets of a golf course, etc. The job was not physically strenuous, it just put a lot of stress on the body. I didn’t heed his advice and was accepted for SS disability in 2005. Since I quit working I have stayed kind of stable, just dealing with residuals and the ever present pain.

I guess the direction of my commentary would be to take as good care of yourself as possible. The nicer you are to yourself now, the more functional you will be later. I know you will say that you do the best you can, and you still have to do what you need to do. I know that. But try to pass some duties to others. Household chores, so you can function at work better.

AND, if you are moving…….. One of the biggest body stressors around.

Take care of yourself. Damage comes easy, recovery comes harder.

Dick S

Stacey,

You kind of snuck that “cane” question in there….

I chuckle.

The cane thing depends. The wheelchair thing depends. The power chair thing depends.

If the grocery store trip is short, up to maybe 15 items, I use the cane. Wal-Mart is always a cane, Sam’s Club is their ride-a-buggy. Sometimes Wal-Mart is Buggy. I take the cane almost everywhere, and when I forget it, i get mad at myself.

The cane started out for balance, but has evolved into support. Like I said, I don’t do steps anymore, but if it is a half flight, or maybe a short flight, I use the cane, or a lot of leaning on the rail.

Inside the house I have a wheelchair in the kitchen. I can spin around three rooms in the house, and stay off my feet a good bit during the day. The longer I stand, the more it hurts. I learn quickly..OUCH..OUCH..OUCH..

If I need outside movement, like my son’s outdoor graduation this year, I have a power chair. I use this for outdoor walks over a football field in length. I can still walk around my yard, but a long “flower walk” requires the buggy. (We have a lot of flowers planted around the yard. My wife and I love to walk around and enjoy the flowers, but I need to ride.)

I totally understand your feelings when you didn’t qualify for that long term care insurance. I had two smaller life insurance plans that I needed to cash in after the job thing stopped. When I re-applied for a small amount of Term insurance, only 50,000, I was turned down. It wasn’t like I was asking for 3 million in coverage. Just enough to get me buried and take care of the rest of the house mortgage. I was depressed. Now I can’t even die profitably. (It is six years since then, I can laugh about it now.)

You talked about you, your spouse, and family. Certainly for me, without their emotional support, their love and caring, I would be “out to lunch”. I need to lean on them so much, emotionally as well as physically to get things done.

Good luck, and take care of yourself.

Dick S