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Living with Polyneuropathy CIDP, GBS, & CMT

This is getting so old


#1

I was just diagnosed 4 weeks ago, but I can't stand it much more. I wake up every morning in pain and am sorry to be awake. I want to be better. I don't have it as bad as many, but that doesn't make the pain go away. I'm loosing weight, I have no interest in food. Or anything.


#2

Hey!! I am so young and I am having problems just like u. I can’t go to parties or hang out w/ my friends. It’s so hard and take a long time. Keep swimming, girl and believe that u can, ok? Stay positive, it helps too.
I know that u are thinking “bullshit! It is so easy to talk…” But, be a believer. U are important and a lot of people wanna see u happy and healthy.


#3

I know it is hard Lilly but do the research and keep working, it will be worth it.do you have a good doctor and support system?


#4

I hope you are doing better. I lost weight too over the course of the last two months. Maybe you can try a nutritional pudding or drink to help add healthy calories and spark your appetite. That's what I did and it got me back on track. Good luck!


#5

GBS is frustrating. You are going to go through so many different emotions. Mad, Sad, Lonely, Grateful it wasn’t worse Etc…
My Dr told me it could take up to a year or more to get back to my normal self… I didn’t believe him. I thought, not me! I’ll be back go my normal self in weeks! I thought as long as I exercised and did my p.t that I would beat GBS in no time. Problem is it wasn’t up to me! We’re ALL on GBS’ time!
I cried, I yelled, I got depressed & it wasn’t until I started waking up & just living the best I could That I started seeing improvement. You WILL get better! days WILL get easier! And one day this will all just be a challenge we over came…
Stay strong! God doesn’t give us more than we can handle.

P.s losing weight & loss of appetite is normal. I was diagnosed with GBS when I was 8 months pregnant… I lost ALL my baby weight and couldn’t put any back on. Try to drink boost protein shakes. It helps as a meal supplement. You need nutrition to get better


#6

The chocolate Boost is pretty good


#7

I’m sorry that you are going through this. I remember the sleepless, painful nights. I think most go us end up losing weight (even when eating), but you need to make eating part of your recovery. You can’t heal if your body doesn’t have the fuel to do so. I hope that you are starting to feel better and that your pain starts to subside. Know that there are people cheering you on and can sympathize with your pain.


#8

Sorry to here of you diagnoses. When I was diagnosed in November of '13 paralyzed from the waist down I thanked God because I knew GBS wasn’t permanent. And I would soon recover given time and work. At first I recovered fast, I was optimistic and working hard. I was getting close to walking unassisted. I thought I was unstoppable, then I had a bad relapse.however I am back to walking with a cane today. This is an up and down disease both physically and emotionally. I don’t have the answers, because this disease is rare, few do, but a positive attitude a strong desire to beat this thing and a strong work ethic will shorten its impact on you. Trust in God’s mercy and seek His help and you will be surprised at the recovery the two of you will accomplish.


#9

Hi Lily,
I just had my 7 year anniversary of GBS this week. Everyone’s recovery is different but it’s also very tough. It does get better you need to eat even if you have no interest in food protein maintains your muscle mass and the more muscle you can retain the better you will be. I would be happy to share any of my experience but keep it mind your recovery may be much better and different from mine. The best thing you can do is stay positive and fight to get up. And that is just what helped me.


#10

My two year anniversary was not long ago. I am feeling normal and look back a year ago at how tired I was doing simple activities. It gets better. It sucks it really does. I hated it going through the recovery, sitting on the couch watching tv and not doing much else for weeks. Going somewhere and laboring over simple things, having the shopping cart taken away from me because I am breathing to heavy. Not working or supporting my family..

Accept and adapt attitude got me through the first difficult months.

We are hear for you, we have experienced the pain the emotions the degeneration of abilities and the recovery process. I truly feel for you and wish you well in your process.


#11

I’m just coming home from being in the hospital for two months. Well actually I got admitted June 23rd got discharged on July 16th and got readmitted on July 21st. On August 19th I got discharged again. I must tell you that this disorder is so frustrating and stressful. You have to be positive about it even though you may not feel like it. Right now I’m home and its so frustrating because I’m always in pain and exhausted. I’m a mother of seven and children need their mother but most days I need them. I’m so nervous about not going back to the hospital I think that consumes my every thought but I’m trying to stay positive. All this to say you are not alone


#12

Thank you all for your responses, it really is comforting to know there is a community here. Its been another month and I feel so much better, no pain and strength is coming back slowly. I have a great doctor, go to physical therapy twice a week and am keeping busy. My family is a big comfort. Today I felt jitter, must be a neurological thing, probably a few weeks before I can go back to work. I just finished a big plate of BBQ, did a couple of small paintings last week and have been restoring some windows at my house. Still can't pump my own gas or operate an aerosol can, but in due time. Best wishes to you all!


#13

It is Feb 2015 - I trust you have made it through the initial shock of being attacked by your own immune system.

I am about 3 years removed from my initial diagnosis of GBS. I had 24 weeks of therapy in the hospital, at home, and at the outpatient clinic. That was enough to get me walking with a stick and driving. I was able to return to work- my job is reservation agent for United Airlines - I sit in a chair and talk on the phone - it is not physically demanding. When I first returned to work it was difficult to type -- slowly my fingers became more nimble and I was able to type with better precision but I have never regained my typing speed.

My neruo says I now have CIDP and will continue having symptoms for the rest of my life - I am almost 76 and I can accept that diagnosis. As long as I take my neruontin every 6 hours and continue to move - walking and riding my recumbant bike helps keep my body in tune.

In the words of the hippies of the 60's - you got to keep on trucking!


#14


Did you always have symptoms after your initial GBS attack or did you mostly recover then relapse? I was just wondering. I am 8 months out and have mostly recovered. I do, however, still have muscle twitches and brief nerve pain at times. I do feel that I tire more easily at times especially when it's cold. My fingers initially had trouble typing but I regained that function after PT and work. Glad you are doing good now! I just don't trust my immune system anymore.

.


#15

Hello Lily. I know how hopeless you can feel. Waking up every morning stiff and in pain.i was also diagnosed about 4 weeks ago. I cried and felt like my life was ruined.i also lost weight, and didn’t eat. However, you have to eat. My neurologist said that you have to eat to get healthy. Don’t give up. I promise it will get better.
Good luck girl


#16

So how have you progressed since then? Its now March 5th so you are 7mths down the road. The reason I am asking is I had or have a mild mild case of what they think is GBS. Its been about 6 weeks since my first symtom. I heard it can take 4-8weeks to be in the clear. Well as far as not getting worse. Today my legs started to hurt. They have been hurting all day. Just wondering if that was normal for you or did you get worse from there?


#17

Hi TNGBS -- I never heard about a 4-8 week clear time! I've gotten better, and keep getting better. Last week my neurologist tested how quickly my nerves transmitted information and he was pleased. Apparently the normal rate is a 2 and in August I was .02, now I rate 1.4. I've lost a lot of muscle tone, especially in my arms, and my arms ache. I've been working out and trying to get my arms into shape. The legs never got as bad, but I lost some muscle tone there too. I'm very active, back to work, working anywhere from 40-50 hours a week, I'm also restoring a house. On the down side, I've developed an Essential Tremor in my hands. I'm thinking about taking meds for the tremor. Hope you get better every day!


#18

Clear time -- what an interesting concept. Reminds me of Scientology, just join us and you will get clear.

I am 3 years away from my GBS onset. I am sitting here right now typing - I have a tremor in my hands. My feet, legs, hands and arms begin to tingle and hurt every 6 hours - I take my Gabapentin and everything subsides for a while.

You will need patience and faith - you will be better. Some of us will carry this forever. Not clear - but still capable.


#19

Yeah I noticed that everyone has a different story. My case so far is very mild and I would like to keep it there. I had a flare up yesterday after having about a good week. I started having trouble with my right leg getting weak. By night my left foot was also numb. It went all the way back up my right side. Also the right side of my face. I got pretty scared. Kept waking up last night to make sure i could move my legs. Today I seen to be a little better. Had anyone else done the plasma to treat their case? My Neuro has a watch and see attitude.