My Feet Are Ice Cold!

    • Anonymous
      February 4, 2009 at 2:23 pm

      It has been 24 years now since I was diagnosed with GBS. At the time I had it they did NO treatment.

      I have experienced relapse beginning about 3 years ago. Fatigue is incredible.

      I also have ICE COLD FEET often. Mainly when I lay down. I get up around 6 in the morning, get the kids off to school and I HAVE to lay back down or my fatigue is profound through the day. But I cannot go back to a restful sleep once I am up early. When I lay back down I can wrap my feet in blankets, put socks on etc….and my feet stay ICE COLD! I cannot even rest because of it….Any one have this experience….also sitting in one spot for long periods….like at church, they become ICE COLD. ???

      They diagnosed me with corpual tunnel and even did surgery for it about 3 years ago and from that surgery, being put to sleep I’m guessing, caused a horrible relapse where I was in the bed for 4 months. Strange…..But it happened. I cannot figure any other reason for it other than the GBS…..

      I also need disability so badly. We do with out a lot because we are a one income family. I cannot hold a regular job or even go to school. My fatigue is so bad. I have no idea where to began. I do not have insurance at the time because my husband’s job was moved to Mexico and he is now in school. I cannot seem to find a doctor who has a clue……Any suggestions on where to even began. I worry about the future financially. I should have had disability long ago but because of the uncertainty of GBS when I was diagnosed and I am sure my age, no one bothered to pursue this for me. SO now here I am with symptoms worsening and it concerns me. With any stress my symptoms become so intense. They come and go over 3 to 4 months, they are up and down.

      I know I have many questions here…but hopefully someone will have some answers for me.

      Thanks so much

      Surviving 24 years! ๐Ÿ™‚
      Monica

    • Anonymous
      February 4, 2009 at 8:36 pm

      Monica,
      I am just past my first year with GBS and have the icy cold feet. They are cold most of the time. I get them warm at night with a warming blanket on the bed.
      With your relaspe, fatigue and stress you need to go to go to the Dr.
      Others on the forumn may be able to tell you how to find a Dr. that knows about GBS.
      Shirley

    • Anonymous
      February 5, 2009 at 10:05 am

      Thanks for your reply Shirley. I have had the Cold feet for about two to three years now…since the last relapse. I do not remember it being the same type of feeling before, it was more of the achy feeling and burning before. I also have them burn sometimes now. I lay in bed with them wrapped also but it takes hours before it gets comfortable. After I lay there a while it starts to have the achy, tingly feeling up to the knees…..

      I know I need a Doctor but have never been able to find one that wanted to do any thing but put me on antidepressants. Even the doctor who diagnosed me does not understand it. Tells me that it goes away in about 6 months to a year and does not come back. THAT’S NOT TRUE! So in my frustration I end up just dealing with it on my on. Even when I had it the first time 24 years ago, I had NO treatment. They just kept me in the hospital for a couple of weeks to try to trouble shoot what was wrong and then when they diagnosed it they sent me home. My Mom took care of me and did therapy with me the best she knew how till I was better. I would even travel to see a doctor who was very familiar with GBS……My husband has about another year of school and he will have insurance. I would be willing to save money for at least one doctor visit if I knew he knew what he was talking about.

      Fatigue I have ALWAYS had since the GBS. That has been my biggest battle until the relapse. Then several more symptoms resurfaced and the fatigue is much worse.

      Thanks again for responding.

    • Anonymous
      February 5, 2009 at 12:03 pm

      Survivor,

      I had GBS in 1976 and starting suffering relapse symptoms about 6 years ago. I also get the incredible fatigue and have been diagnosed with carpal tunnel and neuropathy. I agree with you, I don’t think doctors understand the long term impact of GBS. It is not a disorder that just goes away. I don’t get the cold feet very much but do have cold hands from time to time.

      Take Care,
      Susanne

    • Anonymous
      February 5, 2009 at 11:12 pm

      I am 2 years post-gbs and have cold hands and feet. My mom has Raynaud’s so I am not sure if the cold hands/feet are from gbs or inherited. I use a microwavable “bed buddy” (From Walgreens) to slip at my feet between the sheets on cold winter nights so my feet don’t hurt.

    • Anonymous
      February 6, 2009 at 11:43 am

      I spent years with Dr’s telling me that there was nothing wrong with me and they handed out the antidepressants. When Dr”s can’t figure out what is wrong with a person often the first thing they do is hand you antidepressants. I have gotten to the point that I rarely believe Drs anymore. And the truth of the matter is that I with my own research have fixed 80% of my issues. The CIDP is the last thing that is being worked on with help of a neuro although it has issues due to being undiagnosed for so long (I have made progress though).
      You may wish to visit an alternative Dr as they have more of an open mind. I am in no way saying not to tell your regular Dr your symptoms but instead see what an alternative Dr has to say.
      I have a hormonal problem. Most Dr’s would never believe me as my test values show up “normal”. What is normal for one person is not necessarily normal for the next. I found a endocrinologist who would treat me and my symptoms went away. I have researched farther recently and am tweaking my regime. Today is literally the best I have felt in years.

      My point is that perhaps sometimes regular Dr’s just don’t know what is wrong with us, but perhaps seeing an alternative Dr might give you someone to see your disease in a new light.
      BTW, I use to have cold hands and feet. I don’t anymore. A regular Dr can’t take credit for fixing that problem either.

    • Anonymous
      February 7, 2009 at 2:14 pm

      Hi Monica,

      Yes, I have cold feet and legs!! I’m rarely outside for more than a few minutes to go from the house to the car in to work and the reverse when I come home from work. Those few minutes are more than enough to cause a deep chill.

      I immediately pull on socks, sweatpants, and cover-up with at least 3-4 blankets and quilts, although it will still take at least 3 hours for me to get completely thawed (I had an electric blanket, however, I read pretty scary things about them and I don’t need any more issues). The unfortunate part of the layering and trying to warm up is I tend to doze off and get nothing done around the house. ๐Ÿ™ I’m going to assume that the cold feet and legs may be from poor circulation. I wonder if poor circulation is a residual of GBS?

      Best of luck with regard to receive disability benefits. I’m sorry I’m unable to assist you on that end, but I’m sure others can.

      Take care,

      Tina

    • Anonymous
      February 10, 2009 at 11:35 am

      My feet turn ice cold right before I go to bed. I live with a heating pad (that has an automatic timer) and cannot go to sleep until they thaw which is sometimes several hours.

    • Anonymous
      February 10, 2009 at 2:44 pm

      Monica,
      My guess is that you are Hypothyroid. IF you have had thyroid tests and your doctor say your thyroid is normal, that does not mean it is. Here is what to do: take a thermometer and put it next to your bed within easy reaching distance. When you first wake up, try not to move too much when you take the thermometer and put it under your arm. Do this for several days to take the average. This is your BASAL temperature. They say to stay quiet, keep your eyes closed, and do this for ten minutes. I use a digital and it does not take as long. If your temp is under 97.7 to 98.2 then you are hypothyroid. The symptoms are fatigue, cold extremities, thinning hair, weight gain, depression, etc. They say that 1 out of 4 Americans have it and most are women. I attributed my cold hands and feet to GBS. Most doctors will not do the right tests. The test may show that you are fine (my TSH was normal) but they need to test for T3. The tests usually show that you have enough T4 – but your body has to convert T4 to T3. It is difficult to explain this to most doctors. AND if 25% of their patients have this problem, why are they not researching it like I am???? Dr. Broda Barnes was the pioneer in this. My advice would be to call your doctor or when searching for one that will help you and ask them if they are willing to prescribe ARMOUR Thyroid. IF not, I would not go to them. The other thyroid medications are SYNTHETIC and have side effects and are not good for the body. Armour has a combination of T4 andT3. And it is made from the glands of a porcine source. I found a supplement that contains Tyrosine (an amino acid the thyroid needs), thyroxin free thyroid substance, as well as the minerals the thyroid needs such as Iodine, zinc, copper, magnesium, etc This supplement is working for me as I can see my basal temp getting closer to normal. They recommend using Armour if you cannot bring your basal temp up using supplements.
      Hope this helps. Your post helped me in that I had GBS in 1986 and again in 2006. What helped me was the fact that your operation brought the symptoms back. I have been babying myself thinking that this might happen if I needed any operation. I think we all need to take extra special care of ourselves. Thank you again for confirming that. I would be interested in hearing if you try that simple thermometer test.

    • Anonymous
      February 10, 2009 at 5:35 pm

      Carolyn you explained my “diagnosis” and treatment. I take Armour thyroid and as of a month ago I started Iadoral (an OTC iodine/iodide pill). I suspect I was hypothyroid for many years before I convinced someone to treat me. Since starting Armour my 24/7 pain left me (except came back this last cold but I believe that is because Dr has left me at low normal thyroid still…Iadoral got rid of all pain during cold). My freezing icy hands and feet no longer exist, my tingling has decreased, etc. I hear of people talking abt carpal tunnel on different thread and I wonder if they realize that CT is a main symptom of hypothyroidism. I suspect that many on the forum are either hypothyroid and/or iodine deficient. But few will ever check to find out as it is beyond mainstream medicine. I did want to bring up though that low iodine leads to thin myelin. If you don’t regularily eat sea vegatables, don’t regularily eat deep sea fish and don’t eat a generous serving of iodized salt in your home cooked meals…well you may be deficient in iodine. Just something to think abt in relation to myelin.

    • Anonymous
      February 10, 2009 at 10:09 pm

      Kristin,
      The Healthy Thyroid book says that having one autoimmune disorder can put you at risk for developing another. My whole life I had cold hands and feet and nose and butt. Yet no doctor diagnosed it. When I lived in Tampa for 22 years it was not evident since it was a blessing to not be as hot as others.
      I did take a kelp capsule (which is high in Iodine) when I discovered my low basal temperature but after a day or two I could not take any. I started feeling like I was being bitten by “no-see-ums”. If you have ever been to Sanibel, you will know what I mean. It is like little mosquitoes are biting you all over. One could also take Tyrosine (the amino acid) but that tends to raise one’s blood pressure. That is when I chose to take Thyroid Caos which has a little bit of everything to support the thyroid. It is hard to tell if they are working by my coldness since I keep my home at 55 -60 degrees. (my bedroom is warmer with the space heater.) I have an older home and do not want to stress the furnace until I know which form of heat I would switch to if it goes.
      What is interesting about Iodine is that it is in the same group on the Periodice table as Chlorine and Fluorine so the body will pick up either of those two elements if you have it in your water instead of picking up the Iodine in your diet. I have drunk distilled water for the past 25 years and have eaten lots of fish and red leaf lettuce, so I do not think mine was an iodine deficiency. Mine was stress. I just read that SPLENDA is advertised as a type of sugar but it isn’t….it has three CHLORINE molecules added to it in a five step process……I wonder if this is adding to hypothyroidism??

    • Anonymous
      January 24, 2010 at 11:49 pm

      [QUOTE=survivor21yrs]It has been 24 years now since I was diagnosed with GBS. At the time I had it they did NO treatment.

      I have experienced relapse beginning about 3 years ago. Fatigue is incredible.

      I also have ICE COLD FEET often. Mainly when I lay down. I get up around 6 in the morning, get the kids off to school and I HAVE to lay back down or my fatigue is profound through the day. But I cannot go back to a restful sleep once I am up early. When I lay back down I can wrap my feet in blankets, put socks on etc….and my feet stay ICE COLD! I cannot even rest because of it….Any one have this experience….also sitting in one spot for long periods….like at church, they become ICE COLD. ???

      They diagnosed me with corpual tunnel and even did surgery for it about 3 years ago and from that surgery, being put to sleep I’m guessing, caused a horrible relapse where I was in the bed for 4 months. Strange…..But it happened. I cannot figure any other reason for it other than the GBS…..

      I also need disability so badly. We do with out a lot because we are a one income family. I cannot hold a regular job or even go to school. My fatigue is so bad. I have no idea where to began. I do not have insurance at the time because my husband’s job was moved to Mexico and he is now in school. I cannot seem to find a doctor who has a clue……Any suggestions on where to even began. I worry about the future financially. I should have had disability long ago but because of the uncertainty of GBS when I was diagnosed and I am sure my age, no one bothered to pursue this for me. SO now here I am with symptoms worsening and it concerns me. With any stress my symptoms become so intense. They come and go over 3 to 4 months, they are up and down.

      I know I have many questions here…but hopefully someone will have some answers for me.

      Thanks so much

      Surviving 24 years! ๐Ÿ™‚
      Monica[/QUOTE]

      I am a CIDP patient, and have complained to docs for years about my cold feet….they are so cold, and cold for so long, I can’t relax and fall asleep @ night…. it is just miserable. They often are spotty or turn dark blue/purple/black as if they are not getting enough circulation. ? Docs don’t seem to know what it is, or what to do to help, I might never fall asleep if it wasn’t for my electric blanket…..even then it takes hours to warm them up.

    • Anonymous
      February 19, 2010 at 12:57 pm

      After the last post I made on this forum I had a serious fatigue issue. Have been in the bed and extreemly depressed for a long time. I also had computer problems and it was not easy for me to get to the forum so It just was put out of mind.

      I’m so sorry I started this post and now A YEAR later am just seeing the responses that could have been so helpful to me then. I appreciate them very much and will do the tempeture thing immidiately.

      I still have the VERY cold feet. Takes hours to get them warm no matter what I do, causes me to not be able to sleep. My husband has been out of work now for a year, went to school during this time and is now looking or work in the welding field.

      Does it seem with any of you that when faced with financial stress, or any stress for that matter, that it throws you into fatigue, or maybe its simply depression, more so than the average person? I simply do not handle stress well at all!

      I still need a doctor, but can’t due to finances. Still waiting on that to change so I can hopefull get disability eventually.

      I will check this now that I have a new computer and am making myself get out of the bed and doing every thing I can to shake the depression.

      THANKS SO MUCH and I hope you all are understanding. I do feel bad for droping the post after asking for help.

    • Anonymous
      February 19, 2010 at 11:56 pm

      Find You A Lawyer Who Takes Ss Cases And Let Him Help You With That. You Should Find Plenty Of Them In The Yellow Pages Of You Telephone Directory.
      Sorry About All Cap Letters , But Am Stuck In The Capital Letters Now. I Will Fix It Tomorrow.

      God Bless,
      Drummer

    • February 20, 2010 at 12:32 am

      Hi Monica,
      Were you able to get a dx of Raynauds before the insurance issue, is it possible that nerve damage from the initial onset or neuropathy is causing a circulation problem? About surgeries per a neuro anestheasiologist that we spoke to prior to my sons surgery, try to have twighlight or local if possible for surgical procedures. Apparently the less you have to confuse the system as you do when you are put under, the better. About the lawyer and help with disability, if your finances due to your husbands work situation do not allow, sometimes you can find a law firm looking for pro-bono work. It is worht a try. As well, if your husband has started a welding job, is it a union position? If so, many times part of the union benefits include free legal counsel, worth a try. ๐Ÿ™‚

    • Anonymous
      February 20, 2010 at 8:55 pm

      Seek a social services counselor or an insurance company advocate —be careful here tho? State only medical issues, nothing else. Add your concerns about being properly treated. You can be surprised how this can work for you if you are careful, but again be VERY careful that you don’t blurt out anything they ‘mite not want to hear’?
      Of course being dreadfully sick and in pain go hand-in-hand! The stressors of what mite be NEXT? are ever present and at times, real. Trying to be ‘calm’ during any doctor interview is nerve-wracking. My approach is to be as honest as the doc I’m talking to seems to be….The best words I’ve ever used in ‘interviewing’ docs for second ‘opinions’ is that Me and He/She were not communicating well…or at all? We ARE people after all, and don’t ‘click’ with some folks as well as we could? But when you don’t ‘click’ at any level at all? Well? Time to change channels!

      As for the COLD Feet? Three things I do help bring them to tolerable: First- soak feet in tepid to warm water; Second-use a blowhair dryer on LOW on them and third- use those rice filled micro warmers insulated by a towell or the like. I’d even tried aqua-therapy? I liked the low stress work outs? But Coming out of the pool into real air, well my feet would turn bright blue! Not desirable.

      Finally, no question is too silly to ask here! Asking questions, gets you answers from those who have had the same ones! Don’t be shy!

      Keep hope and heart and good things to come! They must!

    • Anonymous
      October 8, 2011 at 10:35 pm

      Well…. here I am after almost three years! I had no idea I had responses here… it does not notify me I do not guess….. I am going to try checking the temperature…. I have always had a lower temp than usual.. even when I was hospitalized with GBS It would register lower than norm instead of higher…..

      I am on here tonight for the first time since the last post.. researching my current symptoms… I have what feels like shingles on both sides of my upper abdomen and back…. ER said they are not on both sides… so I needed to get with a doctor who is familiar with GBS.. so I will be doing that Monday…but for not I am in serious pain in back…. skin feels like a bad sunburn in front and just serious deep muscle pain around to back.. can’t stand to cough, or sneeze… hurts in back so bad….. my legs and arms have felt the strange pain I often feel except more intese….

      Thanks so much for the advice here and I am SO sorry I am so inconsistant with checking in! I will do better!

    • Anonymous
      October 10, 2011 at 9:29 pm

      I have times my whole body freezes and I’ve been known in 100* weather to put on my winter coat, gloves, hat, socks and 2 thick blankets to hopefully stop it.Most of the time my feet are so CIDP numb they don’t feel the winter cold.They sure can complain when they get The CIDP Chills.

      For SS benefits–use this forum’s Search tab (upper right edge) and put in Social Security/Disability and read the members posts. The best info/advice is already in these previous threads.Getting it is all about your “presentation”.
      Good luck.

    • Anonymous
      October 12, 2011 at 11:45 am

      Thanks! I will read the post on SSI…. I need it so badly. I love working… I am in sales and had originally chosen that profession because I have an 8th grade education. That was the year I became sick…. But I was blessed with common since, and sales and marketing was something I found I could be successful in. I have done pretty well until we had Hurricane Ivan come through and set us back with our business…. several things happen during that time and I had a sort of relapse with the GBS…. chronic fatigue shut me down…. I have not been the same since and have not been able to start back working for 7 years now…. but this was a commission only, self employed type business…. so I have not had enough paid in to SS….. I kept thinking surly I would be able to go back to work soon… I would start back and with in weeks be back down…. back and forth… and now… I know that I MUST do something about SSI…..

      Thanks so much again for the reply.

    • Anonymous
      October 13, 2011 at 12:48 pm

      Its amazing how time flies… I still have the COLD FEET at night and have worn out my heating pad so off to buy new ones. I also use one on my back. Just now checking out pain management and will get an MRI of back. Not interested in pain meds with all their side affects but will see what doc says in a few weeks.

      I got SSDI in June because of the severe chronic fatigue along with all the other ‘fun’ blessings of residuals. I regularly sleep 12 hours a night maybe with one small break. I feel blessed that I am able to give my body what it needs. I did learn about SSI and that would be where you fit in – $700+ a month is better than nothing and you should get Medicaid too. You can file on your own and get denied then find an attorney that will take you. I believe attorneys get a set amount no matter what back pay you may have coming (I got 5k in back pay for SSI).

      I think you could very well have shingles cause once our immune systems are screwed up we are open for lots of illnesses. My temp always runs low but now in my 50’s I’m living with non-stop hot flashes – oh joy NOT.

      Keep us posted on how you are doing!!!

    • Anonymous
      October 16, 2011 at 10:23 pm

      I am post GBS or CIDP, they never did settle on the diagnosis. It’s been 13 years since my last relapse. I still have the ice cold feet in the fall and winter months. I use a heated mattress pad, works wonders for sleep. In the summer my feet are always hot and feel huge even though they do not swell. Strange the sensations you are left with.

      I was diagnosed with hypothyroidism a couple years ago, and since being on Armour thyroid my feet do not get as cold, but still get cold, just don’t feel like they will crack apart like a chunk of ice.

      The thyroid meds have helped a lot with the chronic fatigue issues. So if you think you may have thyroid problems it’s worth checking out. I also take iodine (I saw an earlier poster talking about it). It’s difficult to live with the residuals of this insane illness that most people don’t understand. I hope you get some help survivor21, I’m sure the best way to go is with Social security disability.
      Take care.

    • Anonymous
      March 11, 2014 at 6:03 pm

      Hi Monica,

      I am at my three year mark of recovering from GPS and I have cold hands and feet which I never had before. You should definitely see a doctor since it has been so long. Unfortunately, with this illness everyone recovers differently and everyone’s residual effects are different as well. You should see a neurologist that specializes in GBS. Other doctors unfortunately don’t understand the grasp of what we have endured and why for that matter. But they think at some point when you have recovered you have recovered and its just not true. I don’t have full strength in my hands and like I mentioned my hands and feet are frozen all the time. I was only fatigued the first year but now I’m fine. If I could suggest try doing yoga and I’m actually going to start acupuncture to see if that will help. I’ve done it before for my allergies and it was amazing. Its worth a shot. I hope you find peace in all of this but don’t give up.

      Hugs,
      Cale