My Story with questions

It sounds as if your doing quite well, I got GBS in aug of 08 an I have limited use of my hands an tingling in my hands an feet, I still can’t raise my fingers up an my shoulders don’t have the range of motion they use to have.
It always feel like my skin is on my body to tight even though it is quite saggy.
As far as pain I could take narcotics but I do that rarely.
They say you get the greatest amount of recovery in the 1st year an after that things move along at a less rapid rate.
But every case is differnt.
P_lease keep posting an let us all know how your doing

Hi Missy5,

You are doing great! I had GBS 26 years ago and I still have numbness and tingling in my hands and feet. I also have the pain and all of these come and go like the wind. It is not constant, although the tingling is there pretty much of the time. I have recovered, work and raised a family of four. I would caution you to rest when you are tired and to not push yourself beyond what your body tells you it can handle. I will also say that over time, I have gotten so used to the tingling and numbness that I don’t even notice it unless I am quiet and resting.

For pain, many of us take Neurontin/Gabapentin or Lyrica. We all have different levels of success with them. I have tried Gabapentin and I didn’t like the side effects! It was a question of which was worse…:rolleyes: I do take it at night when the pain is bad and it helps me sleep.

Take care. Also, go through the archives and read posts by Gene. He passed away this past year but he was a huge wealth of knowledge and support for all of us. He was known to give great info around many issues but for me his posts on pain management were helpful.

Hi folks, I was hoping someone could answer some questions on pain, residuals and sleep. I had GBS in August 2007. It was so mild I received no treatment except watching and pain relief. My recovery has been improvement followed by plateaus, then more improvement. If I don’t move, I feel pretty normal. But muscles and nerves are obviously not normal because I get tuning fork feelings or mini vibrating spasms at the end of each day when I try to resume my active schedule. I feel like I have the energy to get going, but the body is not recovered enough to cooperate. What I’m confused about is, are the feelings I’m having neuropathy or mini muscle spasms? I’m asking because I think it will make a difference in the type of medicine I take. And the sensations are usually delayed. What I mean by that is when I’m active, I don’t notice that I am overdoing it until the middle of the night, when my muscles seem to tighten up and I start getting these weird feelings, which are typically in both feet and the gluteus maximus muscles. Has anyone else experienced this or have any advice for this type of pain and sleep relief. It wakes me up about every hour all night long. Thanks for any help. Andi

Oh that tuning fork experience or the buzzing in my body! I don’t have GBS but CIDP but get the same experiences and I hare it! Clonazapam helps with the nerves and sleep and the Gabapentin I take helps too! That would be probably the best two drugs that would help. There are other drugs around but for me those two help. I have noticed many of us in here take that Gabapentin and it must help the others some too!
Welcome to the site Missy! Great people in here! Really great!
Hugs
Linda H

Hi luv2sail!

I have the same issues as you and it is 26 years later. I have the stamina to do a lot of things and carry on a “normal” life but when I over do it, I pay the price and have the same sensations at night as you. My feet and legs spasm, the tingling or tuning fork sensation increases, sometimes to the point of driving me nuts! I take a small dose of Gabapentin (600 mg) when these nights hit and it helps me. I do think it is a neuropathy, the nerves reacting to being overstressed. But I am not a healthcare professional so want to say this is strictly an opinion. I do used to take a muscle relaxant and they do work with the spasms but they do not alleviate the buzz. The Gabapentin does that for me.

You want to remember that each of us responds differently to the various meds available to us. Some of us have GBS, others CIDP. The treatment changes with the issues each of these presents as well as what other health issues you experience.

I hope you find some answers. Take care.

Thanks, Linda and Jan for your helpful advice. The first year I was so concerned about recovery, I really didn’t deal with the “rest of my life” issues. My GBS was classic to the book, and I really believed the “total recovery” stories I read everywhere. I figured since I was never hospitalized, that I would go back to the old me. Amazing how convincing my imagination can be. As I approach my 2 year anniversary, I am gradually accepting that what I have is what I am going to have for forever…quite a sobering realization. The silly thing is I have invented all these ridiculous ways to get through my days and nights because we have a strong family tradition of just toughing it out. So one day I will try to do upper body activities and sit around. And another day I will give my upper torso and arms a rest and only do things which require my legs. All this to avoid being on pills daily…but I don’t really have a great quality of life either. So much for adjusting to my new reality. But I do realize the rut I’m in and that I need to make some changes if I have any hope of sleeping through the night again or getting back to the business of living. I am fearful of side effects of drugs, to say nothing of triggering another episode (I try to make slow changes and do nothing too drastic, just in case GBS is lurking around a corner). I lol as I reread this…makes it sound like GBS is the old boogey man. But I have had other auto immune experiences besides GBS, with no known underlying cause determined yet. GBS has me running scared, I admit, and I haven’t adjusted as “gracefully” as I wish I had. I’ll look into those meds. Do you think they are better than straight sleeping pills? Eeeks, I’m confused. Guess I’ll learn to love the buzz and the vibes!!! luv2sail:o

Hello again! I am one of the biggest chickens when it comes to new meds for I fear the side effects and am very hypersensitive to certain drugs. I have alot of drug allergies. Gabapentin to me after I got used to it really does help! I mean it helps good too! The clonazapam puts me to sleep and helps get rid on anxiety too. Without them I would be pacing the floors. I would not risk taking sleeping pills. Already tried that and was waking up several hours later with the tuning fork issue. When I started on Gabapentin I only took it at bedtime until I got adaptd to it. And it helps! They have tried me on other things and I keep demanding my Gabapentin. I will stay on the Gabapentin as long as I can! They take that drug away from me I will end up crying! LOL! Seems to be the only thing that works! Hugs
Linda H

luv2sail

The Gabapentin does make me sleepy! In fact when I haven’t taken it for a while and I have some, I feel drunk….but man do I sleep. I does make me very dozy. I also find it can cause me to feel fuddle brained so I only take it at night.

Good Luck

Hi LindaH, I also was diagnosed with CIDP in 1998. I also take Clonazepam at night to relax my muscles and it lets me sleep for at least 4 hours straight without waking. I also take Lyrica once a day to make the pain in my spine to go away. But I still haven’t found anything to make the tingling, numbness or the arthritis pain go away. I have noticed though when I was under IVIG for a year and a half that it made the numbness go away but nothing else. According to all the neurologist that I have seen since diagnosis is that I have an acute case and that they can do tests (MRI, CAT scans, Spinal taps and blood work) which I have done but still they have not come up with anything to make this better in any way to function better. When this disorder reared its head it also came out with rheumatoid arthritis, osteopinia, osteoporosis, liver problems, blatter problems, hearing problems and vision problems. I do tests regular for blood clots to be on the safe side. My father passed away in 1999 with a massive stroke also having CIDP and my grandfather (his father) also passed away in 1976 of a massive stroke. Sorry to ramble on but after all this time it is still hard to keep going.

Hi missy5 and luv2sail
It feels like pain and gbs are synonymous. I too believed the full recovery story, but now wonder if I will have residual pain for years to come. I am 4 mos. into recovery. My therapist encourages me to desensitize my hands and feet. In case you aren’t familiar with that it means to constantly expose yourself to new feelings and sensations even if it feels bad or hurts a little. Rub your bare feet on carpet, walk in crocs (if your ankles are stable), put your hands and feet in a box filled with kidney beans,fold laundry. These things let your skin accept something other than the tingling/numbness/pain we all feel. Gradually the frequency and intensity of my pain seems to be diminishing. I am on 2400mg of gabapentin a day and 120mg of cymbalta. I have to take narcotics when I exercise because the pain in my feet increases tremendously. I hope you both can find something that works for you.

I am sorry we have to meet under such circumstances but welcome.

Hi Pam! I tried that Lyrica and it did nothing to take away the pain, numbness or tingling. I have heard that Cymbalta was pretty good and helps with pain, numbness and tingling. Supposed to be a good drug. Me being hypersenitive though I’d rather stay on the Gabapentin. See I take Ibuprophen for my pain and when in severe pain I take Tylenol with Codiene but only as a last resource. Your problem though is that liver problem. Some meds if you have any kind of liver damage can be more harm for the liver! Between my choices of meds for the numbness and tingling. Gabapentin to me is the better drug and much cheaper in cost. I take two at bedtime a total of 600 mgs and then my Clonazepam. And have been sleeping very good at night. Takes away that buzzing at night in my body. Every now and then I get a bad spell but not as bad as before! It helps alot with pain. I think I would talk with your doctor about getting on Gabapentin or Cymbalta. Gabapentin though is much cheaper in price and has less side effects. Ibuprophen though with your liver is not a good idea. Ulltram ER and Celebrex are really good pain meds. The Ultram ER is the best one but not sure if it’s toxic to the liver. Talk with your doctors about switching to these two meds and see how they work. I think they might help you alot. But find out first if you can take them because of the liver! Lyrica did totally nothing for me when I tried it! It was a much weaker feeling drug and did not even take my pain away at all! And made my numbness worse! Hope this helps Pam!
Hugs
Linda H

Thanks for the tips to ask the doctor. He did have me try Celebrex and I had a severe reaction to it. The Cymbalta gave me nose bleeds every morning. But I haven’t tried the Gabapentin as of yet and will ask about this when I see him next time. Your right that the Lyrica doesn’t stop feeling the pain for long, but after having this progress in such a fast period of time any little relief is okay with me.

I do hope that one day there will be some kind of cure for this disorder. I am trying to do every test they have conceivable out there for me to do for them. See my half brothers and sisters and full blooded sister all have signs of this disorder starting or in remission right now. But all I am doing is trying to make sure that my children do not carry this with them.

Again thank you very much for the suggestions.
Hugs to you also 🙂
Pam

Welcome Missy, Andi (luv2Sail), Shie and Pam. I have a few comments to add to all of you as well as all the knowledge and support above. First, when I joined (I have been fighting this for 26 months), lots of people said that GBS means getting better slowly. So first of all, it is important to realize that nerves are really slow to heal, but as long as you continue to make progress, you are still healing. Books quote that “maximum recovery” will occur by 12-18 months, but lots of recent information shows that this is not true for everyone and that quite a number of people continue to heal for 3-6 years. The biggest gains are in the first year, but Dr Jacobs in his talk on GBS at the Dayton OH chapter meeting last year, said that recent information is that 20% of people still make significant improvement 2 1/2 to 6 1/2 years after diagnosis. You can search thread of Notes on talk of Dr Jacobs Dayton OH chapter meeting for what else he said about GBS.

For all of you, keep making baby steps. Andi, I am like you in that I have worked hard to make patterns to get through the day, but I have a tiny suggestion to mix it up a little since you feel like you are a bit in a rut. One of the hard things about all this is that it affects all the body and since lots of activities require lots of coordinated/cooperative effort, arms and legs have to work separately as well as together.

My second comment is likely not necessary, but for those new to all this, when people say you are doing great, it usually is a strong voice of encouragement not saying that the race is won. Each one of us has differences in GBS/CIDP–in how it comes on, what it affects, what helps recovery, time course to recovery, how much goes away and how much continues to bug us. It is a very variable “syndrome”. Also lots of people have other health challenges or sensitivities to medicines. for example, people with liver problems do have to be careful about tylenol and people with kidney problems have to be careful about Celebrex or other non-steroidals.

My third point is that I do think that GBS is the Boogey man–this stuff is scarey–its affect on life and its unpredictability. I think there are worse things out there and so this is not a horrible monster, but it is a humongous challenge to life.

Okay, four. It seems really, really important to be able to get good rest/sleep and it is essential to have pain addressed. For me, lying down (flat) in the late afternoon for an hour or so helps pain in the feet more than any medicine. Other people have also commented on this. It is sometimes hard to do, but is worth trying as well as trying the number of possible medications that can help. It is really important for pain to be controlled enough to live life and to be able to rest. Neurontin is a good medicine, but the best way to have it work is to increase the dose slowly. Lyrica does not seem to work for everyone, but also sometimes people do not get enough. It is also important to increase this medicine up. I can take pain, but I cannot take fussy brain, so I try hard to use activity modification, getting my feet up, and have tried acetyl-L-carnitine, etc to help the fatigue.

Five. many of us seem to be like Andi in that what we do causes pain hours after the fact. I feel when I have done too much in a day that night, two days later, and less often the day after doing something. Usually the night after doing too much–there is a lot of pain and trouble being able to sleep. The two days later part is an achey and tiredness like having tried to run a marathon without anywhere enough conditioning. I started wearing a pedometer to help keep track of the number of steps I take in a day so that I could “slow” down when doing too much and also know a little better what is “tolerable”.

Question for Pam–if I understand correctly, you say lots of family members have something similar? Is there a hereditary neuropathy?

WithHope for a cure of these diseases.

Hi Hope! What is Acety-L Cartinine? Is that an over the counter product? My biggest issue with this Lupus is constant fatigue. I’m just wondering if this will help fight off my fatique. And Pam! I think the Gabapentin would probably be your best bet with the pain. I started out taking mine at bedtime and it really helps me sleep. Good luck and Hope I can’t wait to hear about this product you just mentioned! Hugs
Linda H

Hope, To the question that you asked I do think that there is a connection with CIDP in my family. My father was diagnosed with CIDP, one of my half brothers is just now beginning to show the same signs as my father when he was that age, but he refuses to take my advice and get checked out for this problem, my oldest half sister is also showing the signs of having a neurological problem. The doctors have told her that she has bad knees and replaced them (like they did my father) they have also told her that she has bad circulation in her legs also and they have her wearing the medical socks. She also refuses to take my advice and get checked out by a neurologist. I have another half sister that did take my advice and she did get checked out by a neurologist and they have diagnosed her with perifial neuropathy. I have a full blooded sister that was diagnosed 18 yrs ago with MS that does acupuncture 3x’s a week and she was checked again years ago for the MS and they told her she was misdiagnosed and that she didn’t have MS. So now she thinks that she is cured and now and then she wakes up and has blurred vision or her legs won’t worked properly or her arms are tingling, but she states that she is fine and she doesn’t have any problems of neuropathy and refuses to go to another Western neurologist and get checked out. She only does Eastern medicine now. So to your question I do think that my family has a gene that carries a neurological problem within us, but no one but me (I guess) can see the actual resemblance to what I and my father are/did go through/and going through. Unfortunately they do not take my advise for I am the youngest child (44) and my half sister (who is the oldest) is already 74yrs old, so they figure I have no idea what I am talking about. I hope that I have answered your question for you. Sorry for such a long response. Pam

Hi Missy,
I got GBS in Oct. 2007, I am at 20 months now. The recovery time is different for all of us and the amount of recovery we each get is different.
I have made continuous small amounts of recovery and still see small improvements but am unable to walk without assistance and still use my wheel chair at times and the carts in stores.
I am going to be evaluated for braces this month and hope to get them. I have balance issues and the right foot does not raise high enough when I take a step. I also have the tingling and numbness in the feet and legs and it gets worse in the evenings after I have been on my feet all day.
When people say I look good I know they are sincere when saying it and to family that saw me in hospital unable to move from GBS it is a blessing for them and myself to know I have recovered as much as I have.
People don’t know what our body feels like with the tingling, numbness, fatigue and other residuals we live with daily.
You were in hospital several months and from reading your post you are doing good. Recovery is slow and hopefully you will continue to see improvements.
I am not far from you, We live south of Springfield and my husband works at Madison in London.
I googled “The Spoon Theory”, printed it and gave it to family members. It helped them to understand what my body goes through that they cannot see.
You should read it if you haven’t already.
Take care
Shirley

Hi Shie, sorry I didn’t respond sooner. Eeeks, I am amazed that you have tried to desensitize your body (with doc’s encouragement). I didn’t let anything touch anything until the pain went away, the opposite approach. OK, I do think my muscles got really flabby, but at least my pain was minimized. Again, I was still on my feet the whole time, with only partial paralysis, but I don’t think I could have “tortured” myself. The pain difference after 2 years is amazing, although still there. Be gentle with your self!! luv2sail

WithHope, thanks for all the great information. I have a doc’s appointment soon, so I will share that info. Also, I have many people in my family with neuro problems, though none will admit it! I probably wouldn’t have thought about it until I got GBS, because everyone else seems to be on the chronic, slow decline path. My father is now in a wheel chair, unable to walk, after having limited feeling in his feet starting about 10 years ago. But we have no diabetes or heart disease…physical features are thin, low cholesterol and low blood pressure. Until my GBS, no doctors seemed interested, afterall, we were just soooo healthy. Right! Anyway, some good news and a question. Last weekend I was able to attend my daughter’s college orientation for two days, and I walked almost every where! Hooray! OK, I did sleep for 15 hours the day I got home, but it almost counted as a normal activity. My question. My pupils were really effected by GBS. My vision is almost back to normal, but I notice that after I take Advil, it is difficult for me to focus sharply for several hours. It is always temporary, but does anyone else have this problem? Should I avoid it altogether? luv2sail

I also got sick 4/10/08. I was in ICU until 12/30/08…GBS then they collapsed my lung, bed sore, MRSA, and double pneumonia. Then Rehab hosp to 5/10/09. Then home. First my left arm able to move 12/5/08. my legs able to move in Feb, with first steps in March. When I left rehab, I could walk with a walker. Within 3 weeks I havent used the walker since. Still have limited movement in rt arm, and limited use of either hand.