Foot giving out

    • Anonymous
      February 19, 2009 at 9:50 am

      Hello everyone.

      For the passed few days I’ve been having a new problem. When I am walking down the stairs…very slowly of course…and sometimes even when I am just walking…my left foot, (the worse of the two) will give out and I almost fall.
      It is strange. I get an excruciating pain with it also…and it goes away as fast as it comes on. I havent fallen b/c of it yet …I’ve been very careful.
      I”m wondering if this is something others have happen or if it’s just a sign of increasing weakness. It happens in the front of my foot, on the top, right where the foot bends and meets the leg.

      Having my ivig on Sunday and Monday…I really think I need to move it closer together. I see the dr early March.

      My rash has just about gone away…not all of it but the most. This is the worst I’ve ever had it. My physical therapist said it looks like hives to him…but, he’s also color blind. Some do look like hives but other are small and large pimple/blister/lesion like spots.
      Anyway…gone in time for the next infusion.

      We sold our house in record time…6 days. Now we are waiting for the inspection and appraisal. Closing is set for March 6. Once we get that all behind us, we can continue settling in to our new home. (even tho we’ve been there since the end of May :rolleyes: )

      I dont think I had a good reaction with my last dose of IVIG b/c I was under huge stress. Things are looking up now and I”m hoping that while all is calm, I’ll do better this time. I know and will bet my life on the fact that stress really does in fact play a huge part in our treatment and recovery.

      I am concerned about the new foot issue.

      well wishes,

    • Anonymous
      February 19, 2009 at 4:41 pm

      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.

    • Anonymous
      February 19, 2009 at 10:05 pm

      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!

    • February 19, 2009 at 10:06 pm

      sorry no info

    • Anonymous
      February 19, 2009 at 10:19 pm


      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?


    • Anonymous
      February 19, 2009 at 10:26 pm


      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

    • Anonymous
      February 20, 2009 at 7:38 am

      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? 😉

    • Anonymous
      February 20, 2009 at 8:09 am

      Dick and Julie- what you describe is exactly what I’ve got going on.

      Yesterday it only happened once. Not sure if I mentioned…I work on the 4th floor and I take the stairs down…I feel like I need to do this b/c someday I may not be able. All week, it happened several times a day. It started happening when I’d just be walking, too.

      I’m going to see how things go after the ivig. I didnt wear heels to the office party…no way could I have. I had little ballerina like black shoes. They were so comfortable, too !!!! However, no ankle support at all and I reallllllly couldnt walk.

      When this happens, the pain and the giving out, if I didnt hold on to the railing, I KNOW I would fall. It’s a scarey feeling. When it happens when I walk, I’m just lucky not to go down…I havent been bringing my cane to work. I know…STUPID.

      I’ve have the “jello” foot before but that’s usually after getting up in the middle of the night and my foot is asleep. Straight down to the floor I go.
      Wierd that they are numb, yet they dont just collapse all the time. I dont get the jello foot very often.

      I would like to say it’s just that Im getting old and not the CIDP. Boy would I !

      I am tired all the time…I get about 7 hours or take 1 every night and lately every night having nightmares…so I know I”m tired.

      We got a call from our agent last night…the house passed the home inspection with flying colors….YEAH ! I know we are very blessed to have sold our home so quickly. It was just the right time. I NEVER imagined we’d sell so fast.

      Things are going very’s like I’m holding my breath for something bad b/c it’s been sooooooooooooooooooooooo long since I’ve had a break. I do believe I have a very special angel watching over me. (thanks, Mom!)

      I’ll let you all know how this goes.

      My neice is due to have her baby any day…I’ll be a great aunt for the third time…two girls and this one is a boy ! Something to look forward to for sure.

      Have a great weekend everyone !

    • Anonymous
      February 21, 2009 at 10:27 pm


      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

    • Anonymous
      February 22, 2009 at 8:29 pm

      Thanks Dick.

      You put things into perspective for me. I honestly dont think about later part…take care of myself now so I’m better later. What you say, hits home.

      I recently was talking to my husband about looking into Long term care insurance for me. I thought, getting things in order while I’m fairly young would make for cheaper rates, etc. I’m not even insurable for that. That was a hard blow. Reality hits like that every once in awhile and I’m so bitter about having CIDP when I should be thankful it’s not something worse.

      Since then, thinking about that, and including what you say…I know I need to do what I can to make sure I”m going to be as mobile as possible for as long as possible. I’m fortunate that I’ll be able to retire from my job at age 50 and will have 30 years in and get full benefits. I can retire and work somewhere else or stay there…or maybe even not work at all…but it’s only 11 and 1/2 years away. But, alot can happen in that time…I pray I make it to retirement.

      Doing all I can today so that I am ok tomorrow is what I need to strive for. It just makes sense. I do tend to live in the now a whole lot.

      I am not moving. We moved in late May and that was such a task ! We hired movers tho and my husband is always sure to take special care of me.
      We were having work done at the other house and just listed it at the beginning of this month….but, no, and thank goodness…we arent moving again until it’s to a condo in Arizona ! ( Or wherever my son ends up for college.)
      I had my ivig today and my husband made dinner and cleaned up afterwards. He’s so good to me. Last night we had a nice dinner date and went for drinks after. Dinner ran long so we missed the movie we’d planned to see so we went to a few places for a cocktail or two. He even took me to a kaoroke place that he’s so not fond of. I had a good time being with him. He’s just what I need in my life.
      We’ll get to the movie next weekend.

      We still havent settled completely into our new home…lots to still be done but we do a little at a time. Waiting for him to hang some stuff while he waits for me to tell him where. It drives me absolutely nuts being limited with what I can do. I just finished a staining job on my dining room windows…they are bay windows and now we can hang the custom blinds…as soon as it dries. yeah.

      I havent had much of the foot giving out this weekend..a few times is all.
      I’ll have my second round of ivig tomorrow and hope for the best.

      Dick are you able to walk without a cane ?

      I’m going to go hang out in my room and watch the stars on the Red Carpet.
      Cant wait to see Brad and Angelina. Just saw Penelope Cruz…wow what a dress she is wearing. How fun it must be to get all dressed up and be beautiful …like a princess.

      Hope everyone is doing good !


    • Anonymous
      February 24, 2009 at 12:40 pm


      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