My son's Pain

My son had this GBS from Nov. 2013. He got it from a cold. He kept working from Nov.till the ending of Jan. 2014. He was having hard time standing and focusing at work. Finally his job told him go home and come back when u get better. When u got this GBS nobody understood what it was. He went to two ER’s and they all told him he has a back problem, one of them even gave him vicodin for the pain. He got worst. Finally they changed is medical insurance at work, so now he had insurance with Kaiser. Lucky he did because they found the problem. They gave him the spinal tab and found. And all the signs that came with syndrome that he had. The only problem that I have is that like all u guys that have gotten treatment or was given treatment for it. My son never got anything. They told him to go home. They told him that my son has gone thru it already. And that he is at his weakest with this syndrome. He walks around to a minimum. He uses a walker. He can feed himself. And uses the bathroom by himself. The one that gets him is taking a bath. When he over does it, his legs feel heavy and his entire body feels worn out. Sometimes he feels good and sometime he feels tired and really don’t want to do anything. But they keep telling him to move his legs because they don’t him to develop blood clogs. I need answers if anyone has it. What r the ages that most of the people in the support group have had it? Has anyone in the support group, who knows who have had GBS and was not given any treatment and is better now? Thanks

I had a GBS onslought diagnosed in Jan 2012. I am almost 75 years old. I returned to work after 6 months of physical therapy, 5 nights of infusions with IVIG, and 4 daily doses of gabapentin. I still have problems with my lower legs, feet, and hands but they abate after a dose of gabapentin which lasts 6 hours.

My neuro has changed my diagnosis from GBS (AIDP where the A stands for Acute) to CIDP (where the C stands for Chronic). His prognosis is that this condition will not go away.

My suggestions to you are as follows - 1) be patient - this disease is not like a chest cold, it is a rare, serious condition that takes a toll on your body and your spirit, 2) find a good neurologist who has experience with GBS and CIDP, and 3) get scripts for IVIG, phyical rehab, and Gabapentin.

I wish you success in finding a neuro who is compassionate and will take the time to help. If you are the caregiver, I will pray that you find strength and understanding to help cope with this difficult disease.


When I was in the hospital, there was a young man there with GBS, who also got it following a cold. It can strike any age. Fortunately, it sounds like your son's case was not life-threatening, and that the worst is probably behind him. (But you never know, remain vigilant.) I have met people who have had GBS years ago, and received no treatment, so it is possible to recover without medical help. It all depends on the severity of the case. Some, like mine, are bad enough to require breathing assistance with a ventilator tube. Others, not so much.

Your son should definitely move around as much as possible. The possibility of blood clots is a real one (and not just related to GBS, either, it can happen to anyone with restricted mobility). Physical therapy/exercise is very important to regaining his former strength and mobility. It will be a slow process, but he needs to keep at it. Improvements will be noticed over long periods. His youth will be in his favor in this area, those of us who are older are fighting an uphill battle to start with, so try to look on the bright side. Unfortunately, some level of pain will be his constant companion for the next while. Over-the-counter pain medication helps, prescription stuff is better, but can create other problems. Best to stick with the low-level stuff if he can.

Good luck, and have patience. This will be a long path back to recovery.


We have a CIDP community as well, flat rock bob, and any of you who wish are welcome to belong to both. You can access the CIDP community by clicking the link on the lower right hand side of the page.

My neuro has changed my diagnosis from GBS (AIDP where the A stands for Acute) to CIDP (where the C stands for Chronic). His prognosis is that this condition will not go away.

I am already there - sounds like a song!

dancermom said:

We have a CIDP community as well, flat rock bob, and any of you who wish are welcome to belong to both. You can access the CIDP community by clicking the link on the lower right hand side of the page.

My neuro has changed my diagnosis from GBS (AIDP where the A stands for Acute) to CIDP (where the C stands for Chronic). His prognosis is that this condition will not go away.

Terrific, Bob! Glad to hear it.

Hi Charlene,

I'm so sorry to hear about your son. First of all like I tell many people I visit with GBS. Never leave the hospital without getting the proper treatment. The hospital is a business, your the paying customer. You have the right to get the right diagnosis and treatment for the illness. Too many hospitals discharge the GBS patient too early and the results can be debilitating. Remember GBS starts from the feet upwards and then leaves the body from upwards to downwards. Its a virus and if its not treated it still hibernates in the body and can cause some serious damage by continualy spreading. At this point, go see another doctor, bring copies of his records and make sure he can get IVIG treatments at this point. Yes physical therapy is the next treatment when the GBS has left the body. You will deal with muscle weakness because the nerves are damaged and the muscle has to work for both the muscle and nerves. So extreme fatigue is common. It's like if your doing aerobics all day. You have to get treatment otherwise he is open to other viruses and illnesses since his immune system is not 100 percent. Let me know if I can help you with other resources. Hang in there, stay focused and keep your son motivated in doing other things to get his mind off the illness. When you see the doctor, write everything down and ask ask ask questions, don't leave the visit until your satisfied with the answers. Take good care of yourself.



Hi Charlene, Firstly, sincerest best wishes for your son's speedy recovery. There is hope, however, it is a very long recovery. I too had a cold and was struck with GB which then turned into CIDP - which it nearly always does. What worked for me is this. My body strongly objected to all the heavy drugs, i.e. Cymbalta, Lyrica, very strong painkillers, so i took myself off them after about 8 months and went the homeopathic route. Best move ever. We do not realise just how destructive these drugs are to the liver and kidneys, which are our filtering organs. If they are clear and healthy, the body has a wonderful ability to heal itself but cant with all the drugs clogging the liver. I am 15 months down the line and feel amazing after 4 weeks of homeopathic medicines. For the first time i am almost pain free. Of course there are some days that the pain returns but is much less severe and the goods days outweigh the bad. Eating healthy foods are essential. Find a very good homeopath. Watch out for painkillers, they are SO destructive to the body and do much more harm than good. He will heal, do not loose hope, it just takes time. I am just saying what worked for me and not advocating that it is for everybody, but since homeopathy is not in any way harmful, it does not hurt to try it. I am certainly SO much better for it.

Best wishes, Jacqui.

Hi there,

I had GBS in May 2012 after food poisoning. I was 53 but anyone of any age can get it. I went to the emergency department three times in the same week, the last time by ambulance with paramedics noticing my fluctuating blood pressure. Each time the hospital sent me home with a prescription for a narcotic pain killer and a different diagnosis, like soft tissue damage, a preexisting condition and Bell's Palsy.

Eventually I was unable to walk. I had trouble with breathing, swallowing. lost my voice and couldn't even turn over in bed. For two weeks I could hardly move. I went for a really long time without urinating. I am very lucky I didn't die. The hospital has since apologized to me.

It was a month before I saw a neurologist who also didn't diagnose it but did send me for nerve conduction tests. It was these nerve conduction tests that confirmed the diagnosis of GBS but by this time three months had passed and they said it as too late for treatment. I am in Canada so we all have access to the same treatment so there were no insurance issues just ignorance of this rare syndrome.

There is this myth that most doctors believe and which perpetuated by all the medical links on the internet— that 90% of people with GBS recover 100%. But it isn't true! I haven't come across a single person with GBS who is 100% from where they were before GBS.

I was just left to my own devices. I struggled along with no physio-therapy or anything. I was quite athletic before I got GBS. I paddled outrigger on a team 4 days a week, I swam every day and I walked everyday. I lost all of that andI have never got that back to my old self again.

Finally a month ago I was fed up with the pain in my tendons and the overwhelming fatigue. I contacted the Guillian Barre Foundation and they gave me a the name of a Guillain Barre expert to see. I had to fight with my GP but eventually got her to refer me. The neurologist was in another city but I was happy to travel there. This GBS neurologist also set me up with a physiatrist (a specialist in rehabilitation medicine) who knew about Guillian Barre Syndrome. It was the physiatrist who got the ball rolling and finally got the help I needed. I had foot drop and drag in both feet and was in pain. I have now been fitted with splints and brace and use two canes to walk but I not longer trip and things are getting better. but the fatigue is still there. The physiatrist told me it will take some people 10 years to recover and not everyone recovers completely.

All the suggestion from the others are excellent I'll add my two-bits (or Canadiann dollar which probably worth about the same amount these days.)

First of all I am sorry your son did not receive the treatment he needed it would have made a difference. It might be worth consulting a lawyer. GBS can affect the entire peripheral system including the autonomic system (which includes breathing heart rate etc.) Your son should have been admitted to hospital and kept under observation to make sure he was okay and given IVIG. He should then have been set up with a rehabilitation team and be given physio and occupational therapy.

The best information is in a book by Gareth Parry callled: Guillain-Barre Syndrome: From Diagnosis to Recover

It is important to see a specialist who knows a lot about GBS otherwise they will think your son has recovered. Did he have any nerve conduction tests? It is also important to make sure that he doesn't have CIDp as some one before me suggested.

Lyrica and Gabapentin are the best pain medicine for GBS.

ContactThe Guillain Barr/CIDP( )and ask for help with medical treatment they will be able to give you names and get some support for you son. they also have a lot of information on their web site and there are local chapters everywhere.

This is a good place to start

Most people don't recover 100%. Fatigue is a huge long-lasting residual symptom. It does get better. Exercise with a knowledgeable physio-therapist is essential. Learning how to manage fatigue is also important. Eating a pound of fresh vegetables especially leafy greens with 4 servings of fresh fruit will help. Amazingly this really helps.

Good luck to you and your son.

And tell your son he is lucky that he has a mother who cares so much.

This is a very valuable post, Clarebear, Thank you for posting it! I wonder -- GBS attacks so suddenly and dramatically. Do GBS patients suffer from post-traumatic stress disorder after recovery?

I am sure that PTSD is involved. I was so terrified when I was sick but I buried it for a while just so grateful to be alive. I saw a psychologist who thought I was suffering from PTSD as it feels like a near death experience. I think both the patient and the loved ones and caregivers can suffer from PTSD. I know this was very hard on my partner as well. I think psychological aspects are is talked about in Gareth Parry's book. I think this disease has a huge psychological impact. Good therapy is also important. I don't think I would have been okay without it.

I am working on doing a study about the residual symptoms of GBS from which I wish to write a paper. I haven't put it together yet. I think that too many doctors ignore the anectdotal evidence of their patients with GBS. And when people don't recover they blame themselves.

Contact me anytime you wish.


dancermom said:

This is a very valuable post, Clarebear, Thank you for posting it! I wonder -- GBS attacks so suddenly and dramatically. Do GBS patients suffer from post-traumatic stress disorder after recovery?

Clare, I am a volunteer on the networks and not a GBS patient. I started on the AVM network, as my son had a facial avm. I asked about PTSD because I have seen it on so many other networks for illnesses that involve sudden life changes. When you get started on that paper, which I think is a great idea, feel free to post here asking for member participation. I think doctors could learn a lot about GBS from this community -- I certainly do.

Hi Charlene, I am 56, and had a terrible attack in September of 2013, I did not have a cold, an immunization, a virus, or any other trauma, so the medical community called my GBS ideopathic. It took 4 days before I was diagnosed because I, too still had mobility in my feet and hands although they were weak. Finally after a spinal tap and protein present the problem was discovered. My GBS never entered my diaphram although it surely would have, had it not been revealed in time. I had terrible reactions to the IVIG treatment (9 pints over 3 days) but it worked amazingly for me. I left the hospital for the rehab 3 days after my treatment and spent 8 days in the rehab with PT's that worked me 3 hours a day. I am used to training hard, I was a competitive figure skater and gymnast. But it was such a battle everyday, just to stand from a seated position was like winning gold at the olympics if I actually accomplished it. I went to outpatient PT 3 days a week and did more at home. I still take Gabapentin but nothing else. I am virtually pain free and one of the very lucky ones. I do not have CIDP as some do, so I am blessed in that respect too but it is early and this is speculation and hopefulness. I have an amazing neurologist that is also a friend and is in constant touch with me. The key I think is the right treatment as quickly after the diagnosis as possible. Good luck and I'll be praying for you and your son.

My insurance company assigned a case worker that would check in every so many weeks. At the end of the "chat" she would ask questions like have you had one or more depression days in the last week etc.

I hope your son recovers fully, it is a challenge but it does get better.

I too have a terrible time with bathing. the wenerrgy it takes is enough to pout it off for lengths of time that are too embarrasing to admit to.

It's not that the cold started the GBS, it's that GBS is a virus and the first manifestation is almost always some kind of cold or flu symptom. It is not at all raree for diagnosis to take so long.

If you want, I'd be more than willing to talk with your son. I was a teacher for many many years prior to my own GBS. Perhaps i can help to shed some light on his condition.


I believe you are incorrect about GBS being a virus.