We can weep together. Just key me know when. It’s not hard to do :). This funk I call it’s horrible. I want so bad to go for a run. And I didn’t like running did it for work :). Just retired did think this is the way to enjoy it.
Simebody just send this to me. ( it’s hard to explain to someone who has no clue. It’s a daily struggle being in pain or feeling sick on the inside) never judge what you don’t understand. What is wrong is doctors and people. Friends family do not understand GBS. I don’t understand it myself
You should be seeing a neurologist for the GBS & a nephrologist for the kidney problem. Wishing you the best.
Larry
Tally said:
Hello Larry g. I got my GBS in may 2014. Iam 510 was under 140. I lost all my muscle tone in one week. My fingers feel like somebody taking pliers to the finger tips and clamping down. The bugs crawling all night. My back when I lay down feels like somebody pushing on me. Now iam having the chest pains and stomach. Iam not on any meds for pain. Went to a new doctor yesterday. Was told I have stage three kidney disease now due to the GBS. Then doctor said don't know how to treat GBS. Oh by the way you need a mammo gram. A tube up somewhere because if age and a few other things. I said NO :)
well if people try to go this way I smile and say wow I had a holiday no cooking no worries about if every one has a clean clothes, I was on my best holiday for 7 months :))))) and people dont ask my again, so be smiling even though your heart is agonise, we dont need this questions, it was enough to live this beeing unable to take care of your self.
xoxooxxoxo Helga from Iceland, GBS 13.nov 2006 - 1 june 2007
Larry, I am going on 1 year since diagnosis. I did have the in hospital IVIG treatment. I was on Gabapentin, but neurologist switched me to Lyrica. I feel immediate and intense repercussions when not taking meds. Please don't wean yourself without Dr supervision. My symptoms are worse today than when originally diagnosed, I never know what each day will bring.
larry g said:
I am four & a half months with GBS & I have the same burning, muscle tightness & loss of strength in my arms & legs that a few of you also have. Can you share with me how long you have had GBS & how long you have had these symptoms since your release from the hospital or rehab? I am having no relief from the drugs. I was on gabapentin 3600mgs a day & then switched to lyrica 600mgs a day & am now back on gabapentin & nortryptilene 25mgs a day & am increasing that slowly & have no relief from the burning etc. I am thinking about weaning of all of the drugs slowly & stopping only if the pain increases. Looking forward to hearing your experiences.
Larry
Bergerhoo said:I like your "hot lava legs" description. I get the same ribs feeling also. The loss of strength in my legs is disheartening for me, and the Lyrical has really messed with my appetite. I've gained 30 lbs that past year, and trying to lose it has been very difficult.
Kathy Cooper said:I think this whole GBS thing has so many emotions tied up for each of us in different ways, and I hope your road to recovery continues, especially the emotional one. I keep reminding myself to cut people a break. Ive gotten a few comments from people that I look "normal". If they only knew! My legs are burning hot ... I call them my "hot lava legs", especially when I lay down or if I lean back on a chair, my arms get so numb and my finger muscles feel like they were smashed by a big book. My ribs have a super tight strap feeling and my intestines have no sensation of working. I am so weak in my hands and legs, and my muscles have no feeling under the skin... each step I take coming down the stairs feels like my legs will give out. My right knee meniscus is blown. Ive lost 17 lbs of muscle wasting. My whole normal eating habits are out the door... (no beans, seads, bread, wheat, oats, rice, Paleo diet & no night shades - autoimmune diet,... ). They are very frustrating, time consuming and hard to adjust to! How is that "normal"? I keep having to remind myself that some people dont mean to hurt me, others dont know what to say, but most mean well and care about me! I am trying to cut them a break.
You too, will learn ways of coping and learn the right words to say back that help you get through a very hard time. I am here cheering dor you,
Kat
Hello Larry yes you are correct I should be seeing a special doctor for the GBS and kidney problems, I had nerve test done today. Hurt like you know what doctor hit a vein in my hand all swollen. After test you have GBS. No reason to come back. Need to take care of kidneys. Asked him about a doctor to see. Said go to your pc doctor. Told him I was there yesterday, said go back. Iam done. The health care sucks, the pain is horrible. Yes I did sit in my truck again and cried out of pain and frustion. This sucks so much.
Hi Bergerhoo: I am sorry to hear that your symptoms are worse after 1 year. Did you have a very severe case (needed a ventilator)? I am hoping that the symptoms will subside in a few months, but nobody knows. I made a very fast recovery motor wise, but the pain & weakness are the problem now. Where is your pain, burning etc., located?
Larry
You still need to see the correct specialist for each problem.
Tally said:
Hello Larry yes you are correct I should be seeing a special doctor for the GBS and kidney problems, I had nerve test done today. Hurt like you know what doctor hit a vein in my hand all swollen. After test you have GBS. No reason to come back. Need to take care of kidneys. Asked him about a doctor to see. Said go to your pc doctor. Told him I was there yesterday, said go back. Iam done. The health care sucks, the pain is horrible. Yes I did sit in my truck again and cried out of pain and frustion. This sucks so much.
Yes I knew but it’s the insurance. The health care. With out my general doctor giving the ok to see a specialist my insurance will not cover it. The system a joke. I already pay on my own to see my thyroid doctor. Insurance does not cover him.
So sorry the medical help isn’t there for you Tally, even with the testing to confirm GBS, they are twits!! What about a naturopath or is that too costly. The medical system needs a severe ass kicking!!
Tally said:
Hello Larry yes you are correct I should be seeing a special doctor for the GBS and kidney problems, I had nerve test done today. Hurt like you know what doctor hit a vein in my hand all swollen. After test you have GBS. No reason to come back. Need to take care of kidneys. Asked him about a doctor to see. Said go to your pc doctor. Told him I was there yesterday, said go back. Iam done. The health care sucks, the pain is horrible. Yes I did sit in my truck again and cried out of pain and frustion. This sucks so much.
Hi Larry,
I have a relatively mild case. I lost reflexivity in feet and legs so balance was gone, and had substantial pain in feet and burning in arms, legs, torso. Random stabbing pains anywhere. Since then the pain in feet has worsened so that it always feels like I'm walking on small rocks barefoot. The burning in arms, legs and feet is ever present eve with the Lyrica, or gabapentin I was on before. I was very strong before this began, could walk or stand forever, but I just cannot be on my feet at all now. My leg strength is diminished. Balance still off, my hand grip shot.
My neurologist suggested this is my new life norm.
How long have you been dealing with this? What are you struggling with as far as pain, etc?
larry g said:
Hi Bergerhoo: I am sorry to hear that your symptoms are worse after 1 year. Did you have a very severe case (needed a ventilator)? I am hoping that the symptoms will subside in a few months, but nobody knows. I made a very fast recovery motor wise, but the pain & weakness are the problem now. Where is your pain, burning etc., located?
Larry
Hi: It has been only 4 months since the GBS was diagnosed. Burning , pain & weakness are in forearms & hands & legs from just above the knees to my feet. The gabapentin & the lyrica did not relieve the pain. I am currently weaning down the gabapentin, I was at 3600mgs a day & am down to 2400mgs a day & the pain is the same. I am going to continue lowering the gabapentin unless the pain gets worse. I previously switched the gabapentin to lyrica & that was no better, so I went back to gabapentin. I was also taking nortriptylene with the gabapentin. It did not help the pain & it made me tired & gave me blurry vision, so I stopped using it yesterday. So far the drugs have not helped at all.
Bergerhoo said:
Hi Larry,
I have a relatively mild case. I lost reflexivity in feet and legs so balance was gone, and had substantial pain in feet and burning in arms, legs, torso. Random stabbing pains anywhere. Since then the pain in feet has worsened so that it always feels like I'm walking on small rocks barefoot. The burning in arms, legs and feet is ever present eve with the Lyrica, or gabapentin I was on before. I was very strong before this began, could walk or stand forever, but I just cannot be on my feet at all now. My leg strength is diminished. Balance still off, my hand grip shot.My neurologist suggested this is my new life norm.
How long have you been dealing with this? What are you struggling with as far as pain, etc?
larry g said:Hi Bergerhoo: I am sorry to hear that your symptoms are worse after 1 year. Did you have a very severe case (needed a ventilator)? I am hoping that the symptoms will subside in a few months, but nobody knows. I made a very fast recovery motor wise, but the pain & weakness are the problem now. Where is your pain, burning etc., located?
Larry
Wishing you good luck in finding the the right narcotic cocktail for you. I also use vicoden at times, and it cab help with symptoms.
I know where you are coming from with the tears and the frustration. I would be fine until someone would ask me how I was going then the waterworks would start. As long as I could stay on superficial, objective subjects I was fine but get personal and I lost it. I was going through treatment for breast cancer when the GBS hit me so I have had the double whammy. After 6 months of tears my doctor put me on an antidepressant - Effexor which has helped me and I began seeing a psychologist. He helped me to see that the 'acute life threatening situation' that GBS causes can bring on a Post-traumatic Stress Disorder. PTSD is not solely a military diagnosis. It has been documented that just a lengthy stay in ICU can bring it on as well, let alone GBS and its long term effects. We have a traumatic time going from normal to completely paralyzed not knowing if/when we will come out of it - we get large amounts of narcotics to handle the pain which results in hallucinations etc - I still get emotional when I think of the ones I had - they were terrifying and so real. It is 9 months since I was diagnosed and I still have problems with my hands/feet/face and especially the fatigue. I am not back at work yet and not sure if I will be able to go back. I have come a long way but know there is still a long way to go. The doctors here say not to worry that it will take at least 18 months for full recovery if it even happens. I still get emotional and weepy but am getting better. Hang in there :)
I know the feeling, Deb, the excessive emotions can be a real drag. And the doctors are dreaming if they think 18 months is the typical recovery time. More like years. 2 1/2 years for me so far, and I still have a ways to go. But we forge ahead!
Good luck and best wishes! LanceB
Deb said:
I know where you are coming from with the tears and the frustration. I would be fine until someone would ask me how I was going then the waterworks would start. As long as I could stay on superficial, objective subjects I was fine but get personal and I lost it. I was going through treatment for breast cancer when the GBS hit me so I have had the double whammy. After 6 months of tears my doctor put me on an antidepressant - Effexor which has helped me and I began seeing a psychologist. He helped me to see that the 'acute life threatening situation' that GBS causes can bring on a Post-traumatic Stress Disorder. PTSD is not solely a military diagnosis. It has been documented that just a lengthy stay in ICU can bring it on as well, let alone GBS and its long term effects. We have a traumatic time going from normal to completely paralyzed not knowing if/when we will come out of it - we get large amounts of narcotics to handle the pain which results in hallucinations etc - I still get emotional when I think of the ones I had - they were terrifying and so real. It is 9 months since I was diagnosed and I still have problems with my hands/feet/face and especially the fatigue. I am not back at work yet and not sure if I will be able to go back. I have come a long way but know there is still a long way to go. The doctors here say not to worry that it will take at least 18 months for full recovery if it even happens. I still get emotional and weepy but am getting better. Hang in there :)
Thank you Deb, I have been feeling so frustrated with being so emotional especially when family and friends just want and expect you " to be over it". I do feel traumatized and fearful and did wonder if it was akin to post traumatic stress. Wish I could just go back to being me!
Thanks for sharing, I don’t feel quite so alone or so " silly" for being a cry baby.
Deb said:
I know where you are coming from with the tears and the frustration. I would be fine until someone would ask me how I was going then the waterworks would start. As long as I could stay on superficial, objective subjects I was fine but get personal and I lost it. I was going through treatment for breast cancer when the GBS hit me so I have had the double whammy. After 6 months of tears my doctor put me on an antidepressant - Effexor which has helped me and I began seeing a psychologist. He helped me to see that the ‘acute life threatening situation’ that GBS causes can bring on a Post-traumatic Stress Disorder. PTSD is not solely a military diagnosis. It has been documented that just a lengthy stay in ICU can bring it on as well, let alone GBS and its long term effects. We have a traumatic time going from normal to completely paralyzed not knowing if/when we will come out of it - we get large amounts of narcotics to handle the pain which results in hallucinations etc - I still get emotional when I think of the ones I had - they were terrifying and so real. It is 9 months since I was diagnosed and I still have problems with my hands/feet/face and especially the fatigue. I am not back at work yet and not sure if I will be able to go back. I have come a long way but know there is still a long way to go. The doctors here say not to worry that it will take at least 18 months for full recovery if it even happens. I still get emotional and weepy but am getting better. Hang in there
