Feet in much pain

    • December 6, 2007 at 7:23 pm

      last couple of days it have been harder and harder to walk, every one thinks Im overdoing my self, maby Im but when you think of wheel chair and what a relife it would be not to have to make one more step. Im I getting some more symptoms of downhill of GBS, Im getting more and more of drunk walk, and my feet burn constantly, and my knees are like lost in space, I cant not always control theim. all this things remind me of when I was getting GBS im I getting relaps or Im I over over tierd. I hope some one can give my some addvise, Im lost in space here, I feel ok in my mind but little scear becouse I have never been so bad. since I got sick.
      love you all and sorry how little I write here, I wish I could do more of it but my eyes are not found of puter, gett double vision if I stay long reading from the internet.

    • Anonymous
      December 6, 2007 at 7:38 pm

      So sorry to hear this. Have you went to MD? IF not, please do so ASAP.
      Might be you need to cut back on some of your activities.
      Keep the hope and faith.

    • Anonymous
      December 6, 2007 at 9:48 pm

      Helga this time of the year everyone deals with a little more stress than what we can tolerate. We don’t pay attention and our bodies have to be sutile and give us some indication to slow down. Also, being in a chair or standing or walking a little bit longer a day can also do a number on our bodies. I think you need to cut back and I know right now that is not possible. I know you have asked people for extra help. It is a busy time of the year. I think you are now feeling the residuals. Try wrapping your feet with ace bandages to help with any swelling. Also try wearing a support hose if bandages are not your thing. Take breaks where you just go lay down. Elevate your feet. REST is going to be your best thing right now. [I]Your are burning the candle at both ends![/I] 😮 I know you too well you are alot like me and keep way to busy!

    • Anonymous
      December 7, 2007 at 9:00 am

      hey helga,
      sorry to hear about whats going on. I was diagnosed with gbs in february 2006. I was in hospital for 6 weeks. when they discharged me i was walking with a stick. a few weeks later i went to a rehab hospital for intensive physio and the same thing happened to me. it was like i went backwards for a while. i ended up back in wheelchair and was in constant pain and everything. they told me it was common for that to happen. that at the beginning you can do great but then you can go backwards for a while. keep fighting and working at it but its really important not to over do it. make sure u have a rest after every task you do to allow yourself to recover. you will have bad days. but keep your chin up, you can start over the next day. i hope i helped you in some way.

      jenny xxx:)

    • December 7, 2007 at 10:26 am

      Hi Helga,
      Sorry to hear things are not well for you. Some may disagree with what I am saying, but I have to say it because we have fought the same battle.

      Is it possible to go to the doc and have another ncv/emg comparing it to your last one? This is how Kevin presented and our gbs dx turned into cidp, you know our story. It wouldn’t hurt to explore the possibility. If it is, you can start ivig, if it isn’t, you can go home, kick your feet up and get pampered till you feel better. Either way, it sounds like it would be a win win situation.

      Best wishes,
      Dawn Kevies mom

    • Anonymous
      December 7, 2007 at 3:25 pm

      Helga, as others have said, Rest is your best friend right now. If you don’t rest enough you could go into a relapse. its easier to rest than to recover from a relapse sweetie! Please take time for yourself, rest, rest and more rest, before your body tells you no farther! Take care.

    • Anonymous
      December 7, 2007 at 5:24 pm

      For me GBS is sometime more of a test of will and faith, I could say that I was in the same predicament you are now, and it helped me when I finally realized that GBS is a limiting factor in my life that Iam not normal per sey, that I need to listen to my body more intently, that I need other peoples help and that by asking for their help I was giving them the chance to do good.

    • Anonymous
      December 8, 2007 at 9:02 am

      Helga dear, take a break! I know, easier said than done [I]but[/I] your health depends on it. I’m sure that this time of year you are over-whelmed with candle orders [I]but[/I]. . . Just know that your family here cares!

    • December 8, 2007 at 1:56 pm

      Yes rest is my best friend, I know this and I try to listen to my body when it is shouting “[B]lay down now lady” [/B]but it is so hurting to stand up again, I have also lack of sleep, I’m happy if I get 5 hours sleep, if I sleep more I get very tiered and seems have trouble staying awake all day long. What it is I don’t know maybe because I give my change to relax then my body thinks he has a break all day long *LOL* I have been trying to get to my doctor but he don’t call back, not yet at least, my numbness is changing and I have more and more dead spot´s in my legs and thigh and constant diarrhea, They think the diarrhea is because of diabetic meds, but it is taking big strength from me when you eat and need of the bathroom right away is not what it should be. But maybe I loose some pounds with this *LOL* I’m trying to see all the good things in it 🙂 I would love that my doc would call me, it is not many good nerve doc here in Iceland so you have to stick with your doc and mine is human and he talks to you in Icelandic not in some kind of Latin. As you all see then I’m in need of talk and talk, okey I say it to you I’m scared, I don’t say this things to others around me, they have tolerate so much while I was sick so I don’t want them to worry, Like Kit say I’m working my ass of, but I’m seeing the end of it now, I have sold and made most of the candles that are going for sale for this season, but what happen when I get relax and are not tipping on my toe to keep me walking, I went to the hospital to have me and my hubby weighted and the nurse put up very worried face when she saw me, and when we was alone she asked lot how I have been she felt I looked so much worse then for 2 weeks ago. So something is wrong, I feel that my balance is less, I have not fall, but it is very close to it. just getting out of car then I take time to find my point to stand. I have rest mostly for 2 days now only done the important things I have to do, I donut feel much change in this balance or burning feeling. but it is not worse. So maybe I just need to pull my out of this with time, as I said before I hope I can reach the doc sooner then later to do some test. Sorry for so long post maybe it is about nothing but I had to talk to some one, I keep my head up and tell every one I’m ok, I cant let others be afraid if this is nothing only me and my work mania.
      Love to you all, you are my shoulders for me to cry on, I know all of you have big shoulders 🙂 so I can lean on them.
      Bigg hugs and love from Iceland.

    • Anonymous
      December 15, 2007 at 10:48 pm

      Helga, it sounds to me like you may have Peripheral Neuropathy along with the GBS/CIDP just as I do. The following references have some very helpful information on the subject.
      (1) John Senneff, “Numb Toes and Aching Soles”. At libraries, bookstores and the Neuropathy Association.
      (2) Mayo Clinic Staff, “Peripheal Neuropathy” ([url]www.MayoClinic.com[/url], find a disease or condition). This is the best information I have found.
      (3)Neuropathy Association, (www3.neuropathy.org)
      (4)NINDS. ([url]www.ninds.nih.gov[/url], search NINDS for peripheral neuropathy information page). This is detailed information about symptoms and diagnosis.
      (5)Robert W. Shields, Jr,MD “Peripheal Neuropathy” is part of Cleveland Clinic’s Medicine index ([url]www.clevelandclinicmeded.com[/url] , Disease Management Project.) This is written for physicians.

      I have copied this info from information I have here. Neuropathy is more something you manage than treat. Your symptoms seem so like what I have heard at our chapter meeting.
      Mary Ann

    • Anonymous
      December 16, 2007 at 7:39 am

      gbs is one of many subsets of peripheral neuropathy. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • December 26, 2007 at 10:30 am

      Thanks for your help Im looking into this, Im getting worse, i have more and more numbness, my toung is now nubming up and food is like metal, so I dont eat much, Im loosing my feeling in my feet and hands, I think Im getting little set back, I hope this will go over if I take it easy. I have been working tomuch and this is just the feed back of this and my body is telling me enough of this now you just be lazy few days. I can still control my hands but I my strength is getting weaker. and my knees are acting like they are weaker. I will get up from this, I have not told my family the hole truth about this for my hubby is afraid I get paralized again, but I dont think so. So Im not afraid just frustraiting to have to have so much numbness again.
      But thanks again and Im reading all this imformations that you gave me.

    • Anonymous
      December 26, 2007 at 4:07 pm


      Have you been able to go to the doctor yet? There are so many different things that could be going on with you and we are just guessing here. But you were doing better and now you are worse, so you need to see your doctor. I just went through this and have received IVIG and feel a LOT better! And this is after 9 months!!! Let us know what happens….Gabrielle

    • December 27, 2007 at 7:00 am

      Hi Gabrielle and every one, Im on my way to the hospital now, got to my nerve doc and he told me to get straight to hospital, so Im on my way and guys see you in the evening then I tell you all how it went. love you all and take care.

    • December 27, 2007 at 9:30 am

      I am so glad you went to the hospital! I hope they will start ivig immediately! When you mentioned the metal taste in your mouth, it worried me because it sounded like a new attack. Is it possible to get pp and then ivig? The pp is quicker than a five day course of ivig. I will pray for you to start the New Year on a stronger footing.
      Best wishes,
      Dawn Kevies mom

    • Anonymous
      December 27, 2007 at 9:59 am


      Please let us know as soon as you can – I know you have been working so hard lately. Regarding the metal taste, unfortunately every now and then I do get that too still at times, and it comes and goes for a few months then goes away.

    • December 27, 2007 at 6:19 pm

      Hi every one… I’m Steini, Helga’s hubby and she asked me to let you guys know how….
      I took Helga to the hospital today and they did all the same tests they did when she got the gbs one year ago and then decided to give her ivig’s. I have been nagging in her to talk to the docs lately as her sympoms has been a bit too much similar to those she had when she got sick a little over a year ago but she always seem to have explainations like… this is just over working or this is just because of the meds and and so on:-) She is problably trying to make me feel better… but those speculations of mine are far worse than knowing so it’s a small version of catch22:-) But atleast now they started the ivig right away and the nurce told us they were giving her 0,4 grams pr/kilo (sandoglobulin)and would do so for 3-7 days?

      Anyway I will visit her again tomorrow and let you know how she is. I will also try to talk to her doctor. Helga sends her love. Best regards and thanks for being there, Steini

    • Anonymous
      December 27, 2007 at 9:13 pm

      Hi Steini and thanks for the update!!! I am so glad she went as is everyone else, and that they have started her on IVIG. Tell her everyone says hello as well and hope she feels better soon! Gabrielle

    • December 27, 2007 at 9:16 pm

      Hi Steinni,
      I am so glad Helga is getting treatment. If your question mark after the dosage amount you posted is asking is this proper, yes it is. Usually it is over 3-5. I was wondering, does the doc suspect another gbs attack or cidp? Best wishes!
      Dawn Kevies mom

    • Anonymous
      December 27, 2007 at 9:39 pm


      Please send her all our love and I’m so glad that she is being treated. I know this must be very hard for you, as it seems just like the other day you were feeling the same way. Dont forget to look after yourself and the kids (and dog:) ) too!

    • December 29, 2007 at 6:42 pm

      Hi all
      Helga is finishing her 3rd day on the IVIG and the numb feeling is somwhat fading end more of her “ususal pain” as she calls it is getting back. Her toungue is getting back to normal so we are more optimistic and hopeful she is getting better and hopefully winning this battle. We just take this a day at a time and if the ivig will go well… we are planning on going to a big concert tomorrow and I will then borrow her for a couple of hours and then get her back to the hospital right after the show. But now the weather forcast isn’t to helpful as they tell us there will be a big storm tomorrow so I don’t know yet if I will be able to go… as I have to drive over a high mountain to get to Reykjavík(50km away) where the hospital(and the concert) is. Anyway.. that is a problem I look into tomorrow:D Just wanted to let you guys know and thank you for all your kind wishes.
      Helga sends her love.
      Until later… Steini

    • December 29, 2007 at 6:46 pm

      If interested in some pics here is a link on my blog…(you will aslo see some strange icelandic letters.


      Rgds, Steini

      ps. Sorry! Don’t know how to insert a link properly

    • Anonymous
      December 29, 2007 at 7:33 pm

      Thanks for the update. 🙂 I hope you have a chance to take her to the concert.


    • December 29, 2007 at 8:56 pm

      Helga: I know what that pain is like, I can’t walk the pain gets so intense. It has been 10 yrs. since I came down with GBS, and lately the pain in my legs is getting worse. I’m having trouble getting up stairs and doing things. I do try and rest in between doing things. The morning I can hardly walk. I’m afraid I’m getting disgusted at this point. Sorry don’t mean to be a downer.

    • Anonymous
      December 29, 2007 at 9:43 pm

      Hurry back Helga! Glad you are getting back 🙂 to normal

    • December 31, 2007 at 9:36 am

      Hey guys Im home and feeling little better getting stronger feet, my normal pain is where it should be so Yes im glad, I was sent home in vacation but much be very alert about if I get fever then I have to go to the hospital again my white bloodsells vent down to danger level so they did not want me around in the hospital so I did not finsh my IVIG, they dont know why it went down but could be becouse of the IVIG. So Im home and Im glad.
      love you all and thanks for all the comment and good wishes.

    • Anonymous
      December 31, 2007 at 10:50 am

      Hi Helga, my Dad got gbs nov 06. He tends to over do it too. DONT DO IT!!! It can get very scary if you do. Rest lots Take care Chris.

    • December 31, 2007 at 12:23 pm

      Chris, you dont think I over due my self 😀 I know it I tend to do that but I will be more aware of it now how much I can put on my self, I learn, Im a slow learner but it comes 😀 Happy new year !

    • January 2, 2008 at 10:40 am

      Im out of the hospital and my white bloodsell are ok. I dealing also with clostridium difficile and they think maby it have trigger my onset of GBS II. Im meeting with some speacialist next week to find out more. They dont want me to do more IVIG my body dont seems to handle it again. They think my bloodsell dropped becouse of the IVIG.
      Have you heard of this before or is it just in my doc head?


    • Anonymous
      January 2, 2008 at 4:21 pm

      Hi Helga! I am so glad you went to the doctor and at least got yourself back to where you were before!! I don’t know the answer to a low white count and IVIG. I haven’t heard of that, but that doesn’t mean much coming from me:) Maybe the little bit you got will help you!!

    • January 2, 2008 at 5:16 pm

      Thanks Gabriella, it is much relive on my hubby that Im home for good (some one needs to cook:D ). Yes every little bit helps when you are looking for some reson for things. Im still pretty numb but getting stronger in hands and feets;)