I'm worried

I had GBS in 1991. After going through everything I recovered ok but the last 5 years I’ve been really tired and my joints are starting to hurt. I used to be so active and now I’m just tired and weak. What is going on?

I would also suggest seeing your neurologist. I had GBS in 1982 (I was 2). Over the past 5-6 years I’ve noticed a significant increase in fatigue. I have a lot of arthritis from orthopedic surgeries. They are watching me for something similar to “post-polio syndrome” which they’ve seen in people who had GBS over 20 years ago. Just something to bring up with your doctor. Good luck!

Did it come on gradually?

I’m frustrated! My shoulders bother me and I have some tingling in my right arm. I see about 400 elem. students a day and help coach high school softball. I feel like I can barely make it through the day. I get to see a neurologist in Nov.

I’ve never seen two GBS survivors the same but one consistency is chronic fatigue. Fatigue is a poorly chosen word, like depression or brain-storm. It’s also very hard to explain and hard to have taken seriously. Susan Harris has chronic fatigue. Many people suffering from autoimmune issues suffer fatigue. It is the symptom that has renderred me disabled.
You must see a good neurologist first. They’ll prescribe Provigil or Nuvigil. I found that I was just as fatigued but unable to sleep. Torture. Marijuanna helps keep my mind alert and allows me to recall vocabulary but I find it “brightens” neurological pain and not all states have legalized medi-pit. Through truth be told, so what.
Coffee helps a little. But the truth is that your energy can be compared to a gasoline tank. When you’re on “empty” you need to ALREADY be in bed. Every moment you push yourself after that you will cause damage and fatigue-exhaustion-pain-numb mind-lost vocabularly. You must learn to conserve energy. Let others help you. Keep a urinal by your bed. Keep a bottle of water in the safe with your meds. Cut back on showers. No tie shoes. Standing upright and still will burn energy faster than ambulation.
These are my issues; pay close attention to your body. It “speaks” to you. For me my head begins to sweat. Then damaged muscles around the base of my soine begin to hurt. By this time it is too late.
It’s not possible to avoid the empty tank always. Doctor’s appointments, grocery shopping, standing at the kitchen counter, a 17lb cat on your lap. In line (be careful for the person in front of you who may back up) is standing still. Use a wheelchair if you can.
Another symptom is uncoordination of ocular muscles; an eye patch can help but due to hemispheric imbalnced damage the eyes stop working together. As I write this I must close my right eye.
There’s a documentary on Chronic fatigue called “Canary in a Coal mine.” I bought the DVD and have given copies to many people. Most doctors are flumoked by this and you wou will grow frustrated.
The joint pain is likely the result of compensating for the Fatigue. But again: see at least one neurologist. Discuss the possability of Lyme and accept only a Western Blot test. Most vehemently, listen to your body.
I wish you great ljuck. My GBS onset was 2005. I can’t imagine how difficult it is for you to re-compensate for changing symptoms.
Best Regards,
Dr. David N Seaman
5507 Brockway Rd
Moravia, NY 13118

3 words........Far Infrared sauna......I do it every weekend.....though you should talk to your doc (especially) if you are any meds. I know people that are taking prednisone aren't supposed to do them. I don't take any drugs from docs anymore myself.

This kind of sauna has been used in many of the countries in Asia to treat burn victims for decades.

If I had enough of money (and actually lived in a house)..I would buy me a Far Infrared sauna (and use it every day) instead of just purchasing sessions each weekend. . Heard you have to be careful and research if you ever buy one though....since some are more effective than others...and some have cheap wood (that has chemicals).....so research. Different places have them if you want to try them out.....like spa schools and other places....maybe even some gyms or spa clubs....

Just type in infrared sauna and your major city area and something will likely come up...expand your area search if not. I used to pay about 35 for every treatment but I found a new places that only charges 10 dollars.......(for a 30 minute session).....your body can't handle much more than 30 minutes at a time....and when I first started I had to take multiple breaks. I can go all the way through the 30 minutes now....and my body thanks me for it after. I usually take a few activated charcoal (also ask your doc if you want to try this...since I'm not a doc)....but yup.....the activated charcoal is supposed to bind the toxins that come out.....so the body isn't overly burdened ....but anyway, research and ask your doc (unless you avoid docs like me....lol)

(*Disclaimer....I am not a doc and this post was not intended to be medical advice *)

I agree with Dr. David Seaman. I can so relate to a lot of the issues that he mentioned. I was diagnosed in June 2012 and have recovered a lot, but I still have a lot of weakness and fatigue. Yes, by all means, listen to your body. I have learned when enough is enough. Even though everyone thinks I look "soooo goood", I still can't do like I used to. I definitely have to take advantage of the help given to me and use a motorized cart when shopping in large stores. Take a nap when you feel the need. Do all that you are able to do, but don't overdo. I do more things in a sitting position now. I cannot stand in one spot for any length of time. I have to move or sit down. Thank goodness I have a great husband and we both are retired now. We share the household duties as much as possible and hire outside help occasionally when needed. But you probably need to see a neurologist just to find out for certain what is going on. Hope you get to the bottom of your problem and soon feel much better.

I had this a little over 3 years ago and my neurologist told me this just goes along with it. And that it will only get worse the older I get.

I have noticed lately feeling completely zapped to the point where I take multiple naps a day. I desperately want to be a functional working member of society again and am currently attempting to educate myself in advanced networking security and furthering my education in video editing, production, animation and desktop publishing. It sounds like so much but they are all just a continuation of skills I already posess from being self taught. When studying, reading, or working on projects I tell myself I'll rest just a few minutes and find out when I awaken several hours have past. I have no real sleep schedule anymore. I could be awake or asleep at any given hour and this wreaks havoc on a normal functional life. I can't sleep at normal hours but sleep at the most inconvenient times. :-( Together with the depression of the realization that after several consultations with my Dr. and specialists he sent me to see I have to accept that I will never walk again, but deep inside I refuse to believe it because everyone else I see, hear or read about with GBS is up walking around so why not me. I won't give up, my mind is right, I feel I have the right attitude but so many things prevent me from doing the things I wish I could do because I can't get around without a specialized vehicle that can accomodate a powered wheelchair. Those types of vehicles are so expensive I feel like I'll never be able to afford it so I can never go anywhere and miss out on almost every family function due to transportation difficulties. The ADA has a service called MTS in San Diego that charges about $10 for a round trip, you need to call at least 1 day in advance to schedule a ride, but the service area is limited as well as the times you can schedule. My previous employment was with a defense contractor 30 miles away and I had to wake up at 5AM to drive to work for a 6:30AM to 3:00PM shift. MTS will not pick up that early nor even go that far north which is why I can't go back to work there also because I can't walk I don't think they would take me back due to the logistics of the job requiring foot travel throughout the day which is my primary motivation to retrain for a job that could be performed at a desk. It's very discouraging, depressing, and hopeless, but you can't give up or give in, if I survived the horrors I experienced it was because I was meant for greater things.

Fatigue in general is very common from what I understand about talking with others that have had GBS. Some have much more pronounced symptoms than others, it's not really a uniform thing for all, that is the degree of scale with which the fatigue affects us from one person to the other. A guy I talk to in the Phillipines rarely ever gets out of bed and sleeps 12-14 HRS a day, then I see other people nearly fully functional. I don't understand it but I am trying to beat it and trying different things like diet, exercise, cardio, meditation to overcome the constant fatigue. I think the depression also affects the level of fatigue so the mental process needs to be right as much as the physical, especially regarding diet, more so when you are permanently attached to a wheelchair.

The government has grants for like everything. The process is way hard.....but lots of people with documented disabilities get free houses and other grants for transportation and stuff. If you look hard enough or chat with other people on the internet, I'm sure you can figure it out (I don't know much about grants)

Here is only one of the websites I came across. I'm sure you paid in to society a whole bunch.....might as well try to get back some. http://www.disabled-world.com/disability/transport/private/grant-wr...

Good luck on your travels.

Yes, there are social services and benefits for survivors of GBS. The issue I have is that the fatigue component is so strong that I’ve not the strength to acquire benefits. When 95% of one’s time is spent in a peri comatose state how are we to manage the paperwork, phone calls, waiting rooms, appointments, doctors, voice mail, triplicate, parking, ambulation, sweating, pain, loss of verbal skills and the endless explaination to, "GBS? What’s that?"
We patients need a forum in which case workers can do this for us. Most of us live in poverty; a poverty that grows as our illness makes it harder and harder just to get our mail, get to the bathroom and feed ourselves before clinical fatigue takes us down for another 72 hour stretch. By goverment and AMA standards, I am unable to care for myself. But in my condition I am unable to have my vouce heard by the agencies I need. And this is, for me, the inevitable sentence of squalor, poverty and ultimate homelessness. As we all know, Americans have been trained to step over the homeless.
Ultimately this will be the problem for most of us. And it’s an uphill battle that can’t be won when a single minor error at the pharmacy is more powerful than we are.
Advocacy. We’re invisible to the world, as was PTSD in 1980, Depression in 1940. Gulf War Syndrome and now an endless epidemic of autoimmune diseases that is running unchecked and in growing numbers. Lyme. MS. ALS. SPS. CIDP. ITP. CFS. Every yearbthe AMA and CDC lengthens a list of conditions that are remarkably similar, neurologically based, misunderstood, frustrating sub catagories. And rhis doesn’t factor in the thousands who await and search for a diagnosis.
Without a diagnosis there is no help available. I nearly died and my diagnosis came only by chance when a neurologist visiting from elsewhere chattily asked, "Lumbar puncture? What’s therotein count?"
Yet medicine is corporate now, fully swallowed and controlled by the fourth branch of government: Corporate Lobby. We’re a mere fraction above heroin addicts in regard to the Scarlet A and it’s easier to brush us aside than say, "I don’t know. But let’s treat rhe symptoms. Let’s at LEAST give you a diagnosis so the computers can get beyond the fourth drop down screen.
I realize this topic of “I’m Worried” has run the gammut but we must create some advocasy. We deserve our Ice Bucket Challenge. We deserve a seat and a tissue. An opened can of cold soup. Because wherever you are now you can’t be certain that you won’t be where I am in the future.
Advocacy. Awareness. Hope. Is that asking too much?
You have my heartfelt support and warmth; prayers, empathy and hope. But I fear for you in a much wider time frame. If you’re already weakening from your post hospital point you should know that happened to me too. And I wish for you much better than I have gotten.

Dave Noel,

"I nearly died and my diagnosis came only by chance when a neurologist visiting from elsewhere chattily asked, "Lumbar puncture? What's therotein count?"

I know exactly how you feel and here is why. In my case I was in a coma a full month before Dr's finally diagnosed me. Nearly 2 years after GBS my family told me about this when I was finally able to communicate and ask many questions. They were like Keystone Cops bumping into each other scratching their heads and telling my family they had no idea why I was paralyzed and stopped breathing with a collapsed lung on full life support. My family demanded action and pestered and persisted them to get other specialists involved into diagnosing me. It was an oriental specialist Dr. that performed the steps to diagnose I had GBS and by then the disease had ravaged my system for a full month with no treatment. I wish I knew his name so that I could thank him and buy him lunch and an iTunes gift card or something lol. I was given plasmapheresis and IVIG and because the treatment came so late I believe that is why I was in full body paralysis for 18 months and to this day am not able to stand and logically not walk. In this day and age of medical advancement you would think Dr.'s would diagnose and treat more effectively but it did not happen. This happened in San Diego, CA, not a third world country with undertrained medical staff. I am so disappointed in how my case was handled especially after learning near all people affected with GBS do recover and are able to walk again but here I sit wasting away a life gone awry, aspirations shot, future wishes unfulfilled. It's very difficult and near impossible to be positive and yet I am thankful I am alive. I fought very hard to still be here. I almost died several times while connected to full life support by near suffocation and abuse I have mentioned previously in my introduction. Life is precious and worth living even if you must do so as a spectator because you can no longer be a full participant.

I apologize for my negativity but this is a harsh disease to live with and besides dying I have yet to find a single case anywhere worse than mine and this depresses me to no end. I need to understand why I can't stand or walk and no answers can be found only heartache.

Hi Robin, I was diagnosed a year ago. When I thought the gabapentin (and other mess) were making me so tired and I developed “brain fog” it took a bit to discover that my thyroid gland is shot, I have hypothyroid. When learning about why this would happen and what to expect, I learned that having an autoimmune disorder (GBS) is a risk factor for hypothyroid. The symptoms you mention can be related to hypothyroidism. If you don’t have any answers and haven’t yet, you might get a T4 and TSH drawn (blood test). Make sure both are drawn because TSH can be high or normal and you still have hypothyroid. Best wishes to you!

Munchies Sockpuppet, you have no need to apologize. As noble and patient as we are we have every right to feel the emotions. It’s clear that you und I understand each other. I had forgotten that my lungs Collapsed. See? The trauma isn’t something we can ever fully forget, yet there are people who suffer far worse traumas. We STILL have the right to bum out over it. But carefully, 'cause depression follws quickly and fast.
I’m always here for you.

I was lucky that I was diagnosed quickly. My arm was the first limb affected and on my first trip to the ER they thought it was a pinched nerve and sent me home with steroids. The next day I couldn’t control my legs and thought it was a side effect of the medication so I went back to the ER. After asking some questions the doctor said it might be GBS and they admitted my for tests to confirm. I can understand if a doctor would initially miss the diagnosis because this is considered a rare disease, affecting only 1 in 200,000 people. A doctor could see only one case in his career…or none.