Does anyone deal with Cronic muscle pain, fatiuge and Limited activies?

Residual pain and fatigue are not unusual. It may be that you have CIDP instead of GBS, although only a neurologist can sort it out. Do you see one periodically?

I have residual pain, but my fatigue has gradually lessened after about three years to the point of being minor. Normally with GBS you should reach maximum recovery in about three years. If you are actually relapsing you need to see a neurologist.

I am dealing with GBS again for the 5th time. It is not CIDP. I am in my fourth month and expect to feel fatigue, weakness and achiness along with hands being shaky for up to one year. This time it was shingles that brought it on. The other times I had a flu-line illness and a lot of stress in my life. After about 14 months each time I felt like my old self until the 4th episode. That one caused me to still have weakness. I cannot go up or down stairs without holding on to something and have to pull myself up the stairs. I am 74 now so part of that could be age. I never had any paralysis. Praying that you will get better soon.

Wow, after reading your post it reminded me so much of myself and my “journey” while contracting the disease, the hospitalization,symptoms, etc. Like looking in the mirror just minus the pregnancy. The fact they are just recently knowing how to to test for it, along with the care you need is frustrating. I am now going through I guess what they call a flare up time, after doing some research it seems more like CIDP, I have now made an appointment with a new neuro.I was just surprised that it took a year after the chicken pox for you to actually come down with GBS. After the chicken pox mine went right into the GBS.In a matter of hours I went from not being able to lift my arms to full blown paralysis and a coma. I give you such credit for having to go through it pregnant. Anything at all you need to ask , please don’t hesitate. There are people on this site that have an abundance of medical knowledge, and all have their arms open to help, give comfort,and share their experiences. Hopefully we can talk more.

I have never been pregnant. I have been single all my life. The 5th episode did start immediately after shingles. I asked my doctor if shingles could cause me nervousness and weakness and she said no and sent me directly to the neurologist I had before. He gave me a nerve conduction test and ordered three days of IVIG. The shingles started March 15, 2014 and the GBS immediately followed April 20, 2014. I am so glad I know what it is and that it will be over in about 8 months. Keep the faith. You will be okay too.

To clarify, while maximum recovery from GBS should be reached within three years, the maximum may be less than 100%. You may have permanent residuals from GBS and you may something else going on.

I understand the frustration. I contracted GBS/CIDP after a H1N1 flu shot. Neuro said GBS first. But after relapsing and never recovering fully I was changed to CIDP. It has been a year since my last hardcore relapse, but I still have all those symptoms you describe daily. And I am not sure they are getting better.

Hang in there, everyone!

Hi~~I am 13 years post GBS and can only do so much each day. It is quite frustrating sometimes but I’m glad to have survived the hellish experience. I did have a mild relapse a little over a year ago that was preceded by gout in my left foot and dehydration. Thankfully, I was admitted to the hospital quickly and after being re-hydrated and filled with drugs, the symptoms and paralysis began to diminish. I have learned that this is my “new” normal and adjust my activities daily. My neurologist told me back in 2001 to “listen” to my body and rest when tired. Even if I just sit down and put my feet up for a little while helps. I can not imagine what life would be like with 2 toddlers to look after while my body is trying to recover from GBS. Bless your heart. I remember sleeping A LOT for about the first 2 years out of physical and occupational rehab. My best advice is to not yearn for what you were but to embrace what you have now and do the best you can each day. When you think you’re the sickest person in the world, you’re not. There are so many others worse off than you and this is just a speed bump in the road of life!! Take care!

That’s excellent advice, Nancy.

My three year anniversary will be on January 28, 2015. I still have some lingering paralysis on my right side, including my face. I still had hopes of at least my face returning to normal but after reading some of the comments in this thread, I’m a little discouraged about the possibility. Too bad, it really bugs me, doesn’t feel right. Still, I know I’m lucky.

The fatigue has much improved over the past six months or so. Not 100% better but getting really close. Same with muscle/nerve pain and muscle spasms in my hands. Only get them occasionally now. Same goes with the eye pain and blurry vision.

Re limited activities, same as above. When I’m tired, my leg and hand strength goes and my back hurts a bit. But let me stress – it is SOOOO much better than it was.

I don’t know how the heck you manage caring for such little ones while recovering. My hat goes off to you. I know you have little choice but GBS is hard enough when you are able to rest and recuperate. And GBS patients do a lot of that, normally. Do you have any support system, some friends or family who spell you for rest periods?

Getting it twice…you poor dear! Once is more than enough.

You know, this may not be your new normal. You haven’t had the chance to give your body what it needs to heal. The best may still be ahead.

GBS in ’98, still dealing with fatigue, and the associated change in my lifestyle, which includes disability. Pain, well, there is that, too, but I can tolerate pain more so than fatigue… grrrrr.

Azgold, not sure if you are in psychotherapy, but you may want to get started now if you haven’t already. It took me five years before I got some help with adjusting to residuals… wish I acted sooner. You know, neglect of my mental health issues got me into a serious depressive state, which took about four year of therapy before I accepted the fact that I am disabled. And if you are one of the few who show improvement after three years of recovery, well, it can’t hurt.

YES, YES and YES. I was diagnosed with GBS 15 yrs. ago. I had the “full course” as they refer to it. I was hospitalized, in ICU, and on a ventilator, and totally paralyzed from neck down or should I say feet up to head, hands included. I insisted on being released one day off the vent, mainly since I was frightened of the bacteria in the hospital and didn’t think I could recover there. I also contracted pneumonia from the vent. My husband agreed and, finally, the neurologists after many tests and proof of professional in home healthcare, released me. At that time, I couldn’t move my body and had not even been in a wheelchair. I was told that I would probably only have 30 minutes of energy a day and I would have to choose my energy time well. The energy prognosis was true at first, it took and still takes a lot of energy just to hold my head up. After about 3 months of physical therapy in my home I was able to move my limbs again and slowly,by God’s good grace, resume somewhat of a daily life,although with limited activities. There have been times when I felt I have exceeded my expectations and limitations. Although I have relapses, extreme headaches that last sometimes 3 mths, numbess in feet and legs, pain in shoulder and neck,and very fatigued, I am able to function within moderation. There are many things I would like to do but, physically can’t. It is hard to accept, but am grateful for what I can do. I do know that “pushing it”doesn’t always work for us, it sometimes shuts you down. The older I get, some of the symptoms and especially the fatigue are greater, but out of the blue, comes a good day. Stress is a major factor in all of this. Learning to stay in today and accept that “it is what it is” isn’t easy, but a must. I lost my husband five years ago to a long battle with colon cancer, it was the hardest thing I’ve ever been through, especially with little energy and bad headaches from the stress and sadness, but God gave me what I needed. It’s a journey.

Thank you for sharing your experience in regard to my post yesterday. You said it all when you said “over fatigued'” that’s me. Its not always about what I did but being over fatigued. No one fully understands unless they have been there. I wake up during the night with numb feet and legs now, and its lasting through the day now. That’s a new one have had before but not to this extent and usually goes away. I have been overextending myself and that as you know doesn’t take much. I didn’t choose to take medication because it made me worse or didn’t help. Will take pain meds when unbearable and have to take sleep medication because I can’t sleep. Take care. It is comforting but sad to know I’m not alone there’s too many out there suffering with no answers. One of the prognosis I read says “diminished quality of life”. It has gotten worse with age, just turned 68. I am trying to get past that prognosis even if it HURTS!!