June 28, 2016 at 11:05 am
Hi all. I was diagnosed with GBS in April and am currently trudging (literally) through the recovery phase. While many of my ongoing symptoms were expected — tingling, lack of sensation, pain, twitching and weakness — I am having a few issues that I did not expect.
First, I am particularly sensitive to noise. Everyday sounds (people speaking, radio, tv, baby crying) seem extremely loud to me. On top of that, I find it very difficult to be in a noisy place because I struggle to differentiate background noise from the voice of someone speaking directly to me.
Second, I have a very hard time falling asleep. I slept really well in the hospital and at the rehab hospital, but now I get very anxious before bed and my body feels extremely restless.
Third (this one is more common, I’m sure), I am having body image issues and I am feeling down. I expected to feel angry and frustrated about having gone through GBS and the slow progress of the recovery. However, I did not expect to feel disappointed in myself during this phase. Before GBS, I prided myself on being “fit” and exercising regularly. Post-GBS, I have trouble walking around my house without feeling fatigued. I spend most of my days in bed or on the couch. I eat more than ever (thanks in large part to my amazing family and friends who visit often and bring me unhealthy treats) and I am gaining weight. I know that feeling good about myself is key to recovery (at least mental recovery), but because of the way I was before GBS, I find it hard to feel good when I’m not active.
Any thoughts/advice/empathy/commiseration on the above would be much appreciated!
June 28, 2016 at 3:02 pm
What treatments were you given for GBS and what, if any, meds are you on post GBS? These can play a part in residuals.
However, your symptoms are fairly typical. The disease impacts everyone differently and it seems you have fewer of the more irritating symptoms than some.
BTW, I gained 70 lbs following GBS. I was a semi pro tennis player and very fit prior to GBS. It took me awhile to learn how to eat after GBS. I eventually took off the 70, but will never again be as fit as I was pre-GBS. Others have reported a return to full health, so don’t write yourself off!
June 28, 2016 at 3:25 pm
Thanks so much for responding, Jim!
To answer your questions: I had 5 days of IVIG and I am currently taking Gabapentin (1200 MG/day). I certainly suffer from a number of lingering symptoms — mostly fatigue, pain, tingling, loss of sensation/numbness, etc. — but the 3 I described caught me off-guard. I am glad to hear that they are “fairly typical”.
Thanks, too, for your honesty and your encouragement. I know it hasn’t been that long (it’s been 8 weeks since I was admitted to the hospital) and I need to keep plugging…
June 28, 2016 at 4:07 pm
I too was irritated by noise, but the condition fluctuated where I had to turn up the volume louder than normal at times too. My vision was ultra sensitive to light and i occasionally saw flashes. My speech and breathing were affected also. And, of course, I had all the standard symptoms too.
You might want to look into taking Alpha Lapoic Acid for the neuropathy.
Push yourself a little with physical therapy, but don’t go deep into the fatigue area. Be patient, it can take several months to recover from GBS, especially in the extremities.
June 29, 2016 at 9:00 am
Although I did not have GBS, I did have CIDP and the symptoms of nerve pain and tingling combined with axonal induced nerve and muscle atrophy caused a change in lifestyle that literally drove me nuts.
It is important to discuss your symptoms with your doctor and to try and determine if any of them are from the gabapentin. For example, “In Summary- Commonly reported side effects of gabapentin include: fever, fatigue, viral infection, ataxia, nystagmus, dizziness, drowsiness, and sedation. Other side effects include: tremor, blurred vision, diplopia, peripheral edema, irritability, xerostomia, and amblyopia. See below for a comprehensive list of adverse effects.”
Jim is right. Try to be as active as you are able without aggravating your condition. Personally, I usually felt horrible on any and all of the so called ‘nerve pain’ and ‘mood’ medications. I didn’t feel better until the doctor and myself weaned me off all that Rx stuff. Like it or not, they all are designed to mess with your brain and/or your body’s natural chemical balances.
Focus on what you are able to do. Resist the urge to dwell in the land of ‘oh, poor me, I used to be able to…..(fill in the blank).
Look forward, positively, to your eventual recovery. Little by little.
July 2, 2016 at 10:54 am
Hi Jazz! Yes, I have found that your symptoms are very typical. I had GBS beginning 3/14/15: ICU for 2 1/2 weeks and rehab hospital for a month. Released with a walker on May 1, 2015. I still have the same symptoms you are struggling with. The best advise I can give is get accustomed to it and arrange your life accordingly. It does get better but rehabilitation takes time. Your nerves are healing and the healing takes time. A healthy lifestyle is important.
My main reason for replying is that I can attest to the fact that Gabapentin causes weight gain. I tried other medications with worse side effects, and currently I am on a form of Gabapentin that I take at night and it is time released. It took a bit to get used to it, but I think for me it is better than getting off the pain reliever all together. And, I have lost 6 pounds in 2 weeks so I am encouraged by that.
I have also looked into alternative treatments and have had great results with Bowen Work massage. I was skeptical, but it seems to help me. I also meditate daily.
Be patient as it takes time and everyone is different concerning their recovery time. It is hard for me to stop and take time to rest when I need it. I listen to my body now and rest when I need to.
In my case, they almost lost me because of my extreme blood pressure highs and lows. I’m pretty happy to be alive so when I get discouraged, I take a moment to count my blessings.
Hang in there!
July 12, 2016 at 1:25 pm
We all appreciate your gutsy honesty as you articulate your GBS symptoms. You’re not out of sync at all with your issues. Picture us all in a circle trading stories, I trust what we share back will be encouraging to you.
The 9 months or so post GBS were by far the hardest for me, and much of the struggle was mental. The hardest was grieving (if that’s the word) the loss of my “former body.” Mine was a Miller Fisher variant, so I suffered double vision, loss of balance, and no vestibular nerves on the right inner ear. This resulted in chronic motion sickness and having to wear a patch over one eye to function. SUPER weird and debilitating. I had been teaching elementary school for 27 years, and had to take the rest of the school year off. My entire identity was broken, for it’s all I had done throughout my entire adult life.
That was in 2000, and here I am 16 years later, alive and still telling the story! My life has taken a different path, career-wise, but it’s OK.
Please hold on to this thought… By the grace of God, your brain will, yes, will come to accept the changes that have come about in your body. And these nagging residuals will, believe it or not, become “normal” and doable. For some these symptoms clear up entirely over time. But even if they don’t, you’ll be fine.
It seems simplistic, but just as citlaw mentioned above, finding the things you can do and expressing gratefulness is the key to your own personal peace and well being. You will feel a peculiar love and grace coming near to you, helping and strengthening you from one day to the next.
Keep posting, this is a place you can vent and know we’re all listening.
July 22, 2016 at 4:07 am
This time ,last year, I was in the hospital with GBS. I was suddenly in the role of helpless patient, instead of a nurse. I feel your pain. It takes a lot from you both mentally and physically. I had lost a ton of weight and gotten back into running before GBS, so my beautiful calf muscles were the first to go along with the foot drop. Although I am still far from being healed and still cannot walk per se, I can tolerate standing for a good 10 minutes. I still shuffle with the walker , can’t quite pick up the feet just yet. I can get a tiny bit of a lift once in a while. It may seem like an insignificant gain, but when you’re paralyzed from the legs down, it’s good. I do have some tone in my calf muscles. It’s been there for a good 6 months. Don’t worry. If I don’t do a lot and it’s there, yours will come too. I am always fatigued and yet I have trouble sleeping as well. I also have extreme body image issues too. I did very well on my diet and never felt deprived and now everyone is trying to feed me because they say I’m too thin. I’ve given in a few times and find myself eating when I’m not hungry. I am also on neurontin. I’m so afraid that I will gain weight and I can’t run anymore so how am I going to take it off? There’s no set scale or crystal ball that will give a recovery time. Everything you said sounds pretty normal to me. You’re not alone. Hope things get better for you.
July 22, 2016 at 12:31 pm
You are in a place of waiting which only a select few can identify. I admire your honesty, accenting just how difficult the day to day is. There is no euphoric high with this kind of discomfort, just dealing with an ordinary day is a challenge in itself. A GBS friend of mine here in CA took down unnecessary pounds with stationary equipment at home, once he got back minimal tone and a degree of strength. I hope the same for you when that day comes.
The fatigue is still with me today. It’s altered my lifestyle somewhat, but thankfully I was able to get back into surfing and swimming after a prolonged season of recovery.
Again, thanks for sharing.
July 24, 2016 at 12:14 am
I am glad to hear that others , like yourself, have been able to resume some of their former activities. I’m in a bit of a holding pattern, of sorts. I had a new onset of symptoms, so I could possibly have CIDP. That’s in another post though. Thank you so much for the well wishes.
August 20, 2016 at 10:34 pm
Thank you all so much for your honesty and openness. Admittedly, I took a break from the forum to focus on my mental health and decided to turn back now to report that I am feeling better. I no longer cry each time I think about what I am going through and some of my physical symptoms are diminishing, too. Like all of you, I continue to struggle, but now I am hopeful and excited about the future — thank you for reminding me that I am not alone and that I have a very long road to recovery ahead. I hope one day I can respond to a post and give others the hope and encouragement you have given me.
August 21, 2016 at 11:59 am
Mission accomplished, Jazz. Your post says it all… there’s realism in your voice, not minimizing the challenges you face in recovery, yet at the same time, hope. It’s a missing ingredient that drives so many GBS folks into ambivalence. It’s funny how even the least micro-improvement can be hopeful, which is exactly what we all need to hear, and it does encourage. You’re a brave heart, Jazz, hold fast to your moments of grace and savor them. Our prayers are with you toward a future of significance and increasing joy.
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