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

    • August 26, 2014 at 7:43 pm

      Hi, I am 3 years Post GBS, I contracted it when I was 18 weeks pregnant with my Daughter. It was horrific while pregnant and so very scary. My question now is over the past three years I have had one episode of a “relapse” when I was pregnant with my son a year after my daughter, it was not as bad as the first time but pretty nasty. I deal with regularly feeling horribly fatigued and am completely limited to the things I used to do. I struggle with time management in the sense that if i do to much im out for a couple days and have to rest because i become extremely weak and have a hard time functioning, this is extremely hard because my kids are 2 and 1. I look back at my hellish last 3 years and wonder how the heck i made it through that all physically and mentally. Im in therapy/counseling for PTSD, its been helpful to a point but im just wanting to have support from others who have experienced GBS or another form similar and how are you functioning again and what is your new normal.

    • GH
      August 26, 2014 at 9:33 pm

      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.

    • August 26, 2014 at 10:16 pm

      Thanks for the Imput. We just moved to Seattle so im in the process of trying to find a good Neuro. I also have been diagnosed with Another autoimmune disorder. Before i got GBS, 1 year before, i contracted Chickenpox as an adult, not shingles but full blown chicken pox for the 2nd time that turned into mild encephalitis. So Docs think something else may have been going on before hand. Maybe my fatigue, muscle and nerve pain is from this other disorder, they are not sure what it is, but at this point i may never know because docs dont have every answer but im trying to narrow it down and hear every persons individual experience, its helping. I have seen many Neuro’s and docs and have heard several different opinions. But for sure GBS because of the unmistakeable onset of paralyses in 72 hours and nerve testing. I’ve heard of some people who dont completely recover from GBS. But I will ask at my next appointment about CIDP. Good to hear that your recovering. ANd thank you for your response

    • August 28, 2014 at 4:19 pm

      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.

    • August 29, 2014 at 10:40 am

      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.

    • August 29, 2014 at 2:37 pm

      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.

    • August 29, 2014 at 5:31 pm

      Thank you both for your responses, i cant tell you how good it feels to talk to someone who knows exactly what ive been through. Im sorry Barbra that you have had it for the 5 time! I cannot even imagine. And MACKAY 1 I know what you mean about researching CIDP, Ive done the same thing because I keep getting people telling me that I should be fully recovered which is frustrating considering I struggle daily with pain and weakness to the point where my husband has to work from home and take sick days to help with the kids because they are at such a young age they need everything done for them. It is so hard to climb stairs or squat or anything else that involves my legs and arms. Like holding my son for too long i feel weak. I dont mean to complain, but im 28 yrs old and people in my life just dont understand, they know what ive been through but all they see now is me not in a wheel chair or having to be in the hospital so they think im fine. But little do they know that EVERY single day of my life is a battle and a struggle, to not fall into a deep depression or allow my pain to take me over. I am finally seeing another Neurologist because my last one told me that I should be fine now and acts annoyed with me. Ive had the Doctors tell me I was a hypochondriac. So i havent seen this one yet but im hoping that this one will not have a God complex and KNow more about this disease instead of googling it! Do you have any suggestions on what types of things i need to talk with the Doc about? Im new to this and most docs havnt known much and have just passed me on to the next.

      • August 29, 2014 at 9:53 pm

        I am so glad we found each other through this site. I’ve been shopping so my legs are weak. I just wanted you to know I will think of all the questions to ask him. Basically me new neuro wanted a history from doctors since and during the GBS, which sounds strange to me and I’m going to check before my visit.As probably with all of us, my records are the size of a large novel You know the saying “through sickness and in health” about marriage ? This is your sickness, and I know for some women( it’s the mother instinct ) we hate for anyone else to take care of our kids. If a neighbor or friend says what can I do , let your answer be”could you just even watch one of the kids for an hour”? People sometimes say can I help , just to be nice, but the sincere ones you will recognize from your heart. Til tomorrow, try and sleep even an hour later.

    • GH
      August 29, 2014 at 5:40 pm

      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.

      • August 31, 2014 at 12:13 pm

        GH, thank you for the kind sentiments

    • August 30, 2014 at 11:07 pm

      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!

    • September 1, 2014 at 1:06 pm

      MACKAY1 thank you for the info and advice about my next appointment. I laughed when you mentioned that your medical records are like novels because so are mine 🙂 Jllcidp, Sorry to hear about your daily struggles too, I know it has really helped me to hear from you guys struggling with the same thing and on a journey struggling also with our mental state, its seriously a mental battle because it takes a lot to keep it together and to keep it going, I know mine really is. I dont know what has been happening to me this last week as im waiting to get into the neuro, ive been feeling extreme back pain and tingling in my arms and legs, similar to the symptoms of my two last onsets. I have PTSD so I am trying to be realistic about this and not think that it could be another relapse but im in a great deal of pain not like my regular daily pain. It is possible that i could have an injury not related, but Last night i could not sleep because my back was excruciating and ive been have tingling pain in my legs and arms as well. Im hoping i have a serious pinched nerve but with this disease in the past when things started i thought it was everything else like “pinched nerves” when in reality it was setting it. Im keeping my mind busy with my kids while resting in bed or on the couch trying to make it through this, thank you MACKAY1 for sharing about accepting help for my kids, I really struggled with that the fist couple years but just lately ive really been able to really work on it. THANKS

    • October 1, 2014 at 7:25 pm

      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!

    • GH
      October 1, 2014 at 7:34 pm

      That’s excellent advice, Nancy.

    • November 28, 2014 at 8:26 pm

      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.

    • January 17, 2015 at 6:08 am

      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.

      • February 12, 2015 at 11:19 pm

        Actually…I hadn’t even considered psychotherapy. I did refuse to take anti-depressants in the hospital. All part of my ‘I hate taking pills!’ mentality.

        I recently passed my three year anniversary. Dreaded its approach because of being told that I’d never get any better after that. But now that it’s past, I still find myself unable to believe that I will be stuck like this for the rest of my life. Is that a driving/motivating factor to continue my slow progress forward, or merely denial? I figure there’s only one way to find out.

        Truly, I don’t feel depressed, although I do get tired and frustrated with the seemingly endless plateaus. Did you feel that way prior to depression setting in? Can a person be depressed without realizing it? That’s a serious question because I don’t know.

        I understand what you’re saying about accepting our disability but I’ve thought about it after reading your post and if it turns out that I do not improve any more than I have, I can live with it. I’m one of the lucky ones who got a lot of the way back, even if it isn’t 100%.

        Still just wish I had normal feeling and function back in the right side of my face, though.

    • August 3, 2015 at 6:17 pm

      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.

      • August 4, 2015 at 8:45 am

        Let me add a yes, yes, yes to your post. I am 18 years out. Same severity as you it seems. What is frustrating , is many neurologists have told me, it isn’t the GBS, it’s the residuals of it. To me that’s like saying, the chicken or the egg.As I get older the symptoms vary, the intensity especially. When I get over fatigued I now itch unbelievably, having to take Neurontin, which gives me some crazy dreams. My restless legs have made me go on yet another medication called Ropinerole, which knocks me out for an hour, but upon awakening the restless sensation is gone. It is no wonder these medications make me sleepy since they are used to quell the nerve endings. I wish you the best of luck, and know you are not alone.

    • August 4, 2015 at 5:29 pm

      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!!