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/, Uncategorized/The Aftermath – My residuals from GBS and how they affect my life

The Aftermath – My residuals from GBS and how they affect my life

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By |2018-08-28T08:26:58+00:00June 22nd, 2016|2016, Uncategorized|28 Comments

About the Author:

Author of Happily Ever After - My Journey with Guillain-Barre Syndrome and How I Got My Life Back.

28 Comments

  1. Anonymous June 17, 2018 at 11:50am06 - Reply

    I had gbs 265george meyer

    • hollyaftergbs June 19, 2018 at 11:50pm06 - Reply

      How are you doing now ?

      • Valeria Osorio June 22, 2018 at 11:50am06

        I am doing a lot better! It turns out that everything was flaring up because I wasn’t getting enough sleep! So, I’m taking melatonin now to make sure I get enough sleep. And I’m going back to physical therapy again! Thanks so much for checking in!

      • hollyaftergbs July 19, 2018 at 11:50am07

        That’s great! Isn’t it nice when you can find a solution to a problem 😆

  2. Valeria E Osorio June 9, 2018 at 11:50pm06 - Reply

    Hello, I am still trying to work through the trauma of my gbs. It seems that the more I try to move forward the residuals become worse. I was wondering if after a couple of years you started developing worse or more symptoms. Currently, I am beginning to experience extreme pain in my back and limbs and peeing is becoming more and more difficult. When I left the hospital and got physical therapy, I felt invincible, but now I am slowly starting to get worse and worse again. I was wondering if anyone else has experienced this. Btw, thank you so much for sharing your story. I know it is not easy. I cry every time I think about my gbs and talking about it is a nightmare.

    • hollyaftergbs June 10, 2018 at 11:50pm06 - Reply

      I think you need to talk to your doctor. I haven’t heard much about residuals suddenly getting worse, especially the bladder issues. But mind you everyone experiences are very unique. How far into your recovery are you ?

  3. Michele Deaton March 26, 2018 at 11:50am03 - Reply

    My residuals are severe lower back pain.It is like my back is being compressed and can not get comfortable no matter what I do. This is also how my GBS started except the pain was so severe I I could not move. My swallowing is not great and I get sick and cant eat without my throat locking up. It makes me sick and then I can only eat a couple of bites of something during the day. I also have numbness and tingling in legs and arms. I feel so helpless! I do feel that the residuals are getting further apart. I am now in Physical therapy because most of my muscles are so tight that they are making my knees and hips hurt. Baby steps. Thank you for your blogs. I have so many more questions about GBS! Would really like to see a neurologist that is researching this more.

    • hollyaftergbs March 29, 2018 at 11:50pm03 - Reply

      Sorry to hear you are still dealing with residuals; I do believe that over time these will improve.

      I just got a new neurologist after 7 years, and it was the best decision I ever made. You may have to push and advocate for it but it’s worth it!!

      • Michele Deaton March 30, 2018 at 11:50am03

        I have thought about that also. How did you find the right one?

      • hollyaftergbs March 30, 2018 at 11:50pm03

        Well I was fortunate that I knew one that specialized in neurological conditions (and GBS) just though my volunteer work with the GBS foundation. Otherwise I wouldn’t know where to start!!

  4. AHMAD March 6, 2018 at 11:50pm03 - Reply

    IM AHMAD FORM YEMEN IND NEW INFORMITON APOUT GPSNAW BAELIS

  5. Anonymous May 9, 2017 at 11:50pm05 - Reply

    My sister sent your article to me and it brought back many memories of my brother,Rick was around 10 years old when he came down with GBS, luckily my sister who was training sly ill as a nurse was home and she realized that Rick was seriously ill. 4. He was rushed by ambulance to Sick Kids in Toronto where he was on a ventilator for a long time, he eventually was transferred to rehab as he could not walk at all, eventually had to have bones in his feet fused so that he could walk again, also left with nerve damage in hands. It was very hard on my Mom and Dad to have their only son go through this and unfortunately my father passed away just as my brother really needed his father to guide him in the right direction. Unfortunately my brother passed away in his sleep he had just turned 50. I miss him so much and your story just brought back many memories in his battle to recover from this illness

    • hollyaftergbs September 5, 2017 at 11:50pm09 - Reply

      Wow my heart breaks for your family 🙁 I am so sorry that you have gone through so much pain. Hope your family is healing. Life is so unpredictable – I am so sorry for your loss.

  6. Anonymous August 30, 2016 at 11:50pm08 - Reply

    i had GBS last year I suffer with residuals in my feet like yourself and my fingers tingle all the time. I was ventilated in intensive care for 8 weeks. In hospital for 6 months. I feel lucky to have come this far and count my blessings. I had total paralises in my face which has improved but I still don’t look like I did . Its not a full year yet so things may get better who knows. Its good to read about other GBS sufferers thank youmm

    • hollyaftergbs March 29, 2018 at 11:50pm03 - Reply

      Thank you! Things can definitely improve many years later. Never give up hope!!

  7. VMC June 23, 2016 at 11:50pm06 - Reply

    I had GBS Sept 27 2014 Completely down n out Im so glad to see residuals of others it is so helpful. Thank You All

  8. Andy Frew June 23, 2016 at 11:50pm06 - Reply

    I am one year on and have made a fantastic recovery. I have many of the risiduals you describe, weak ankles, hip flexor, they ache from time to time some hypersensitivity on the soles of feet. Fatigue is there and so is the occasional “befuddlement”

  9. Ruwayda June 23, 2016 at 11:50am06 - Reply

    I’m glad you posted this. I saw your video of your progression. It was just unfathomable to me that you could do aerobic like exercises so soon after diagnosis. It looked as if you had made a “full recovery”. Non GBSers would think you’re completely “normal” but residuals can be very debilitating without the people around you knowing or understanding it. A lonely place to be.

  10. Roger June 22, 2016 at 11:50pm06 - Reply

    I’m entering the 1oth year of my onset of GBS, which was diagnosed in October of 2006. I didn’t go on a vent, but did have breathing issues early on. My case turned out to be the bad form known as AMAN. It’s left me with a degenerative condition with no hope of recovery. I’m not depressed to talk about it, my faith has enabled me to deal with the reality of my condition. Most of the things you listed are applicable to me with drop foot, fatigue, and other things. I currently have a stoma as my bladder was eventually removed, and I faced other major health things as a result of my condition. The word run is not in my vocabulary, nor is walk fast. I wear a brace on my right foot, and had to learn how to drive with my left after close to 40 years of driving. The one thing I can honestly say is that my mind is better than ever as I force myself to read, learn, and keep my brain strong by playing hidden object games and other games of trivia or challenge types to help me stay intellectual! I say that I’m a very intelligent person, but that I’m just not that smart sometimes. Trying to do something I used to do, but knowing that I can’t do that anymore is one example. If I fall, most of the time it’s because I wasn’t thinking before I stepped. Simple things that can lead to harmful results is part of hanging on to my independence, but sometimes you just have to say when. My prayers are with all of you that have faced this or that know someone who has. If you have had success in your recovery to whatever extent, and can lead a life close to where you were before you became ill, be grateful for that! If you didn’t, use it to help someone else going through what you are, and stay positive and strong in interacting with those not so fortunate. You just might be the light that someone needs to see that they are not alone in this battle. I don’t want to get religious or political here to do any harm to someone’s beliefs, but I know for me, that if I didn’t have my faith, I couldn’t have lasted these ten years. Thanks, and God bless you all.

    • hollygerlach June 23, 2016 at 11:50am06 - Reply

      Thank you so much Roger and yes I agree, my faith helped me so much through my experience. I am impressed you learned how to drive with your left foot!! God bless you as well and thank you for your kind words.

    • Shannon June 23, 2016 at 11:50am06 - Reply

      I agree my faith has carried me through. Staying positive is a choice I must make each day. Also, acceptance is key. Once I accepted that daily pain was something I was going to have for the rest of my life, life became easier. It is what it is until it isn’t.

  11. Cathy June 22, 2016 at 11:50pm06 - Reply

    I admire your description of neuropathy since it so clear. After CIDP I had neuropathy. Hard for someone who has not experienced it to understand how it make a huge difference in your life. Mine is totally gone now and I rejoice every night when the sheet touch my toes.

    • hollygerlach June 23, 2016 at 11:50am06 - Reply

      So glad to hear your neuropathy is gone now!!

  12. Gord Hira June 22, 2016 at 11:50pm06 - Reply

    Hello Holly
    Over the years I have kept track of you by your posts as well other comments from people associated with you. Who could imagine 8 years has come and gone since my adventure began with GBS. I am very glad to see that you have come to grips with your residuals of GBS, as we all have them, in one form or another. It can be really hard for some people to adjust and accept that GBS can be quite a crippling phenomenon either physically, emotionally as well as mentally. If you recall we have exchanged a few emails over the years as well chatted a bit at the Calgary conference.

    We all share a commonalty, not only in that we all had GBS in one degree of seriousness or another but in that we all have similar if not identical residual effects to one degree or another, and that in a nutshell is the rub so to speak of GBS. Everyone who has contracted GBS pays the price in one way or the other. You have created a forum to express yourself and your situation while so so many others have no idea what to do or where to go for answers, and of this I have personal knowledge having lived through it a few years before your episode, remember. So I applaud you for your posts and for trying to get the information out there. Your post titled Aftermath in my opinion is a long time coming and is something most people with GBS have been looking for from you. So keep it coming kiddo don’t sell yourself short you have more to say so write it.
    Gord

    • hollygerlach June 23, 2016 at 11:50am06 - Reply

      Thank you so much Gord. Of course I remember you and appreciate all you say so much. I will keep writing!

  13. Jayne June 22, 2016 at 11:50pm06 - Reply

    I agree with you about the pushing yourself to do as much as you can to get to the best post GBS you can be. Obviously that’s different for everyone, but I like to think of it this way…when GBS struck me down, I had no control over the circumstances I then found myself in. But once I was out of the coma, weaned off the vent, I realised then was the time to fight back. I too have residuals 2 years down the line, including fatigue, weakness of the voice and swallow muscles,and general neuropathic pain. But the most embarrassing for me is that I have tremors and shakes in my hands. This makes it difficult to do tasks that require dexterity …couldnt thread a needle for instance, and using keyboards and phones are difficult. The worst of it, however, is that people comment on it.I dont know why…do they think I’m particularly nervous, or an alcoholic or that I’ve got Parkinsons or MS? It really bothers me!

  14. Shannon Green June 22, 2016 at 11:50pm06 - Reply

    I am 2 years out since GBS on-set and I have many residuals from GBS. I am so grateful you posted this. You are such an inspiration. I have ankle weakness, poor balance, numbness & tingly in all limbs but the feet and legs are the worst. My feet cause me so much pain & many kinds of pain such as skin crawling, feeling like my right foot has been crushed, feeling like I am walking on rocks. I can’t feel my feet which sounds crazy to say I can’t feel my feet but yet have excruciating pain at the same time. I also have severe fascia adhesions in my IT bands of the quad muscles in both legs that feel like hard marbles. They are very painful. Massage and Graston physical therapy techniques help in the short term but I am finding that the marble like knots come back. I am looking for a long term solution to managing these knots.

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