Chronic Pain & Exhaustion

Good Morning everyone,

I came down with GBS in August of 2010 and was hospitalized for 5 weeks. Was in ICU and paralyzed. I was given a complete recovery by the neurologist in January of 2011 and file was closed with neurologist. Since then I have always had pain, which I was told could take years to go away. As well I am exhaustion, some days are better then others and I see myself again before GBS but most days are a struggle. I was doing really good the year after GBS and was getting back in shape, but am finding each year the pain gets a bit worse and some days the exhaustion takes over. I don't have the option to go back and see a neurologist because of how our wonderful health care works (they only see you if your on a death bed), and after leaving hospital was given no support or anything. And family dr knows nothing about this, good for colds and cuts :)

So wondering if others have symptoms like this, and things that work to help?

Happy Mom, i came down with GBS 8/13… I first want to say I know exactly how you feel! I have been struggling myself because I’m in pretty much the same boat as you with the doctors. Don’t get me wrong I think they’re trying to do the best they can but they honestly don’t have much to go on and don’t see it very often. I would love to keep in touch with you and maybe between us we could compare notes. I also have fibromyalgia, DDD (arthritis), and a few other issues. I’m trying to get diabaility now because I can’t work because I don’t know from day to day how I will feel, the pain, etc… I’m also back in physical theropy and that seems to help a little after a days rest afterward. Hot water on my legs and feet also seem to help me. Should you want to talk about it more please don’t hesitate in getting in touch with me.
Take care and keep your chin up!!

I also was wondering if anybody knows of any studies being done on GBS?

I do have the numbness and tingling and burning, but it comes and goes. Worse when I am tired and cold. Which sucks as I live in a cold climate...hahaha. I do have a hot tub and find that I spend a lot of time in there as it helps relieve the pain. I don't take any drugs, as I have two young children and I stay at home with them. I will look into CIDP...I am on a wait list to see a neurologist again, but its 18 months-2 years. :(

mdolich said:

My story is similar to yours. I first came down with GBS in 2003, was in ICU, paralyzed from the neck down, comatose, and on a ventilator. After receiving the loading doses (a total of 10 rounds) of IVIG, and eight months of physical therapy I was back up walking using a cane.

I did fine for a little over two years, but then had a relapse in November 2005. I was re-diagnosed CIDP because of the relapse. Since then I have had a relapse in 2008 and again in 2010. Most neurologist will re-diagnose the patient CIDP if they have relapses. Many neurologist consider CIDP as the Chronic form/cousin of GBS.

Fatigue is very common in both GBS and CIDP (and many other neurological disease/disorders).

Do you have any numbness, tingling, or burning type sensations? Have they been getting worse? If so, then I'd see a neurologist again somehow.

Hope this helps, "Stay Strong and keep a Positive Attitude"

I came down with GBS in May, spent 2 1/2 mos in hospital and sent home with no access to further neuro support, similar to you. The lack of support and not having someone to oversee your care is appalling and leaves you feeling " written off"! Not right. So sorry this is appending to you too. I have thought about trying a naturopathic Dr. But can’t really afford it. Might be helpful for you to go that route if you can access someone good. Supposedly time heals. I really thought by now that the pain, burning numbness would be diminishing and am concerned it is here to stay. In my case, proper rest, no stress would help but hard to find. You take care and reach out online, lots of great info and support are available on this site and keep pestering your Dr. For a referral back to a neurologist since he’s got no answers. Sending healing vibes your way.

Hi Happymom,

I'm almost 28 years into gbs, the fatigue and pain will continue to improve. The more you can stretch and roll and exercise the better you will feel. Cold weather here in the Midwest is awful. Aleve is the most effective otc painkiller for me. Hot baths, (whirlpool) stretching and swimming are great as well.

The fatigue issue is one that you just have to overcome I think, by making exercise plans and sticking to them. The good news is that we probably burn allot more calories with less exercise than someone who hasn't had gbs. The exercise activity only needs to be 5-10-20 minutes at a time. Any amount of exercise is awesome! (Remember therapy when you were in the hospital) A hot bath with stretching and bending is exercise, cleaning and dusting is exercise, washing and wiping the dishes ....I have a Schwinn Airdyne stationary bike that I like to ride a few minutes at a time a couple times a day...

The pain will subside and the fatigue will improve!!!! Keep up the good work!!!

Happy Mom,

Just now returned from a follow-up appointment with the neurologist for my 23 year old daughter who was diagnosed with a mild case of GBS one year ago. The IVIG infusions given as initial treatment seemed to put her on the road to recovery but she has since relapsed and has lots of pain and neuropathy.

The neurologist is now thinking it’s CIDP. CIDP is the long-term or “chronic” version of GBS, so if the results of her EMG and nerve conduction study are worse than this time last year, her tentative diagnosis will be confirmed. In any event, she’ll need more IVIG infusions.

We are lucky enough to be seeing one of the top neurologists in New York. I really hope you can get to an informed neurologist rather than being forced to wait. My brother also has CIDP and I know from him that his monthly infusions have halted/slowed down the nerve damage that would have progressed if left unchecked.

Wishing you luck and speed,


Currently, I am seeking a referral to see a Neurologist with more experience with GBS. I suffered what they think was a milder case of GBS in June 2014. My Neurologist doesn't seem to know much about it so he hasn't been able to offer me much treatment or help with recovery. He did refer me to PT which has helped tremendously. I had recovered almost completely until I had a sinus infection in Feb 2015 and started experiencing a re-flare of symptoms. My symptoms have been nowhere near as bad as previously but it is a reminder that this may not be out of my life and may never be. Luckily, I am feeling better again but I do feel that I am ready to continue in pursuit for a better course of treatment for my life. It can really beat you down when you can't get an appointment to be seen and when you do your physician doesn't understand your symptoms.

I guess my advice is good PT, patience in recovery, and a positive attitude. I have to keep reminding myself of that last one. I have a renewed mission for recovery! Good luck to those struggling with this and don't give up!

What a possitive name you've given yourself. Like you, I came down with GBS in Nov. of 2010 and it seems like a life time ago. I had the fairly typical viral "what not" with a fever that kept me in bed (and not on the golf course) for two weeks. The doctor treated me with antibiotics the first week, but when the severe pain set in in my middle/lower back, I thought I would die. He sent me to the hospital where it took three hours just to get the pain under control and I could finally sleep.

I awakened about 3 AM and had no feeling in my hands and feet...calling out to the nurse brought two little (and I mean "teeny") aides who thought they were going to get me up walking. Why...I have no idea. But I protested loudly, screaming that if they put me on my feet they would break every bone in my legs; they persisted and I fell completely to the floor screaming all the way. It was like a nightmare. Two nurses finally came in and got me into bed, raised my pain meds and disappeared. Since I've had a lot of experience in hospitals I knew the only way I would get appropriate care was to get my husband there with me. It's probably the first time ever that we've left one another alone in a hospital, but I was so insistant that he go home and get some sleep he finally did. Instead, at 3:30 AM he's on his way to help me fight the nursing staff and anyone else who might not understand paralyzed hands and feet. Incidently, because you'll all understand this you may think it funny as I do in retrospect: in order to get anyone's attention since I couldn't move anything, I managed to swing my butt a few times and finally knocked the bedpan on the floor. One time I was grateful for a sizable butt. Then I had to get someone to dial my husband's phone number...that's how absolutely helpless one is when your hands and feet are useless.

Because of the "fall" I was given what amounted to a "private" nurse for the next couple days until they diagnosed the GBA. That was of great assistance because the paralysis continued to pave it way up the body, eating up all that lovely melanin I hadn't previously known anything about, and I was a mess. Pretty much from the second day on (for about two weeks) I had almost no memory. I received IVIG almost immediately, but after the 3rd course my kidneys shut down and my heart went into fibrillation. It was seriously touch and go for a few days. My three daughter from the Chicago area were called to come and we waited to see what the virus would do.

After two weeks, I was transferred to a different hospital for more advanced p/t, and after 3 weeks it was decided I was well enough to go home. After I fell down stairs twice at home, my neurologist (I love him dearly) arranged with my family to have me assigned to in-house care at a physical therapy care home. I was there three months and it was like lost time...if you know what I mean. I remember it all, but anything in the world, anything outside of my "Manor" has been lost to me. I had great care and lovely people whom I considered my family.

After finally getting home (is anything scarier than doing your first long concrete stairs after 3 months of no stairs?), my husband and I settled in with him doing absolutely everything except my personal care. I continued to feel better for almost a year, long enough to get myself off pain meds, when I awakened one morning feeling horrible, hardly able to get out of bed, and such a deep depression and weakness I have never experienced before. the exhaustion is difficult to explain, but it's bone deep and I spend all afternoon in bed. It was then time to see the doctor again. This time I wisely saw my neurologist who felt the pain had taken over my body and mind and I seriously needed to get back on narcotic meds and anxiety medication. It made a big difference, but I have never gotten even slightly close to the physical condition I was in prior to that episode. It's been five years and if I hear one more person say "my uncle had your disease and he was completely healed in a year" I may very well smack them.

There is a large percentage of GBS patients who reach only a certain point in recovery...and then it's plateau time. I'm one of those. I see that some of "Ben's Friends" GBS genesis receive periodical IVIG treatment. My neuro and I are in discussions about that...a bit hesitant because of the kidney/heart problems involved with the treatment.

This disease is very nasty and doesn't treat everyone the same. I feel fortunate that my doctors, although not having treated a GBS patient before, studied, called those who were "in the business" and got treatment after treatment going. He also believe that one's body cannot fully recover, not complete physical therapy, without pain control. Here in KS it's very difficult to gain access to narcotic medication, but for those of you who are suffering without it, insist on pain relief. And if that means "throwing a bedpan down on the floor" (don't take that literally, please") do it. Neurologists are best suited to treat GBS and if you're getting no help from your physician, please find someone else. I know that sounds easy, and it isn't, but it's the only course that will help bring you along.

Sorry to be so long winded, but I've been reading about members who are still suffering severe pain, members who have not gotten enough p/t, and members who have no support system. Sometimes you just have to take it up yourself, hopefully with a mate, a family member, or a dear friend...someone to support you at a dr's appointment.

I'm still struggling after five years. I'm completely house-bound, don't drive because of the strong medications, and am still trying to learn to look past the dust on the furniture. But, I have a wonderful husband (celebrating 50th anniversary in May) and haven't given up completely on golf yet.

Peace to all of you. Accept the help that is offered; ask for help when you need it; and, for heavens sake, tell your doctor over and over and over again about your pain and exhaustion. Good luck.



Good morning! I know your feeling of desperation, if you do not have a doctor which you can call! One of my friends has a neurologic condition and my daughter had GBS last year, at 13. This friend heard me for a few months, and then said the most important thing that I learned this far: once you had GBS, you must develop a good working relationship with a neurologist that will know who you are when you call. Someone that would return my calls immediately. She said that I would never fell okay without having that partnership, and she also warned me that it would be challenging to find that person (but that I would find him/her). Well, that set me on a mission to find a wonderful neurologist that had his/her own practice. The hospital neurologists were not responding timely to me. I finally found a neurologist that happened to have a daughter who is the same age as mine, and she connected with my story. She always calls me back within a couple of hours, and I have her cell phone number for a true emergency. I hope that you can find a doctor that will give you the support that you need. I believe that all of us have ups and downs on this road to recovery. My daughter is still experiencing some pain and some exhaustion. In general, it is getting better and better, but it goes down hill if she over does it in one day. One thing that I believe is helping her a lot is the consumption of fresh vegetable/fruit juices everyday (80%vegetables, 20%fruit). Rest also helps a lot! I wish you the very best! Good luck!

I just want to say that I'm envious of your turn around time. I was diagnosed in April of 1999 and still I have to walk with AFO's. Although I was never in ICU, I did have to go through IVIG and also plasma pheresis. Needless to say neither helped. My doctor just told me that I'll have to wait and see if my nerves grow back. The only suggestion that I have for pain is medical marijuana. It works better than prescription drugs and is better for your body.

Yes the struggle with the Doctors is frustrating. I am also in Canada where we don't have the option to see a neurologist without a referral. We don't have any private ones. Our health care is great for everyone but unless your very very serious, its years to see one, if they will even see you.

My cousin raves about the medical marijuana as she used it for her cancer, and I have thought about giving it a try for the pain, as I don't like the prescription drugs. I found the addiction to the prescription was too high and I took myself off as I have two little ones to care for.