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Living with Polyneuropathy CIDP, GBS, & CMT

Feeling weempy


#1

i having a little numbness and tingling going on. my face is numb and tingling only on right side then i am having pin brick or bee sting feelings in face, neck, arms, muscle cramps along with burning and tingling in feet and hand and the dreadful muscle cramps in sides. two weeks ago i had broncitious been on meds for it. just a little worriesome . my big question is when folks that has had gbs, does it seem like being ill is like ten times worse. pre gbs. i could kick an illness easily now post gbs. i feel way worse. do anyone else feel this way or am i the only one.


#2

You’re not alone, since GBS a common cold feels like a major illness


#3

This happened for me following a sinus infection back in February after having recovered pretty good for 4 months. It kicked off some of my old symptoms and some new ones. I am finally doing better but it was rough!! Ran up some medical bills again when I was whittling down my initial bill. Not looking forward to cough and cold season again.


#4

Yes, I HATE HATE this terrible GBS, I never have been a sickly person my whole life so it'shard for me to deal with this and it has been going on and on, for me about nine years. I thought it was something I got that eventually would go away, I didn't know I would have to live the rest of my life with it! I don't know how long you have had it but there are good days and bad days so cheer up, and hopefully you will have better days.


#5

I had GBS 32 years ago and every time I get sick I’m way sicker than any one else in my family and my nerve pain is a lot worse. I consider an early warning system that my feet start hurting a lot worse a few days before I get sick. Make sure you rest and eat well. If you are concerned make sure you see the neurologist.


#6

I had very sever case in 2000. I experienced all the symptoms you mentioned plus more.

I have not notices any stronger reactions to common illnesses than I had before GBS, and HEY, weepy is normal. You would be abnormal if you didn't shed a few tears especially within the first year or two post GBS attack your world has changed.

I wish you a full recovery.

Dan


#7

I had a relapse 1/2 months after my first diagnose. I was sent to hospital immediately where they gave me 8 1/2 IVIP. Just a month ago I developed pneumonia so it was back to hospital again from my rehab hotel and was kept under observation for 3 days and allowed to return and resume my training. Everything is positive and I’m making a much speedier recovery than expected.


#8

Hi I'm feeling very weepy at the moment. My husband has divorced me because I got gbs very severe, iv been left parralplegic and left in a wheel chair and wheelchair bound.iv got another chest infection. . I was left with a chest problem permanently. I have never felt so alone and helpless ever. Thank you for listening.


#9

Sorry I misunderstood the meaning. Well I do feel weepy. And you shouldn't feel wimmpy.


#10

last week I aknowledged my tenth year since the onset of GBS. There are textbook consistencies for the course of this horrible condition and one is that you will forever be more vulnerable to illnesses. The flu or pnemonia could kill you which is why I have had a flu shot every fall as well as the pnemonia vaccine. The research suggesting the flu shot causes GBS is bunk. The flu is not. I’ve been hobbled by GBS.
Fatigue-a silly name for what it is- has taken me down. As time passes you will learn to adjust. Remember that most doctors-despite what they claim-have never seen GBS until you. Learn as much as you can. Read the books written by doctors. Study neurology, psychology, learn medications and the Latin Codes. Learn how to read a CBC. The more knowledgable you are with doctors, the better off you are.
Last month I was diagnoced with a malignancy: skin cancer, or as I say to the doctors, Superficially Spreading Carcinoma. Now I study cell mutations. For 32 years I was a composer and musician. With glutoness irony, life is making me a medical student. But given the attitudes and conveyor belt that is American medicine you must hold your own with these doctors. It is YOUR life.
I believe that I am rare in this support group: one of the few old timers. Many members are right in the thick of it. IVIG is critical. A must. If you’re lucky enough to have not required life support and a year in hospital, then gentle, slow Physical Therapy may restore a lot. Sadly I did the “no pain, no gain” trip and destroyed many unprotected nerves and muscles. Listen to your body. Use ommon sense and research every drug. Know that pain management is a lot of mind work, natural body work and there’s no such thing as a pain “killer.” but do not buy into today’s propaganda hype regarding pain killers being the cause of heroin addiction. Respect the controlled substances, lock them with your gun, the pictures of you naked that an old flame took, and your coin collection.
Happily and/or sadly, you are NOT alone. Yes, GBS is rare but we’re out here. In addition, there are dozens of other autoimmune conditions from Lyme to Stiff Person Syndromebp and they suffer many of the same symptoms. Get a good therapist, monitor depression and make sure your caregiver (spouse or otherwise) has just as much support. Divorce rate is high (my wife decided we wouldn’t reach 23 years before I came out of the coma) but many WANT to stay. They need counceling, support groups, breaks, humor and help.
As for my cancer, yes, it’s something I could shut up about and bail out fast and easy. But that’s no better than what my wife did. So where I know that Bronchitis kicked me hard, I also know that cancer will. So I’m ready. I have two girls and a grandchild. I owe it to them.
Good luck. Remember to laugh. And if you feel alone rent “Cake” with Jennifer Anniston.
Dave


#11

Mine occurred following a Tetanus shot. I just can't get the flu shot. I know that the flu has the potential to cause me problems but I don't think that I can walk into that shot. No one was there for me medically and I don't think that they would be again and once it starts, I'm afraid I would just be on that ride again and who knows how bad it would be. I know they say that GBS a second time is rare but for some reason I feel that I get the rare stuff or at least that is what every medical doctor I come in contact in my area says. They weren't very supportive and I just had to fight through it and recover the best that I could with Physical Therapy. Even my Neurologist would not commit to say that I should get the flu shot and my job requires it unless a doctor writes a note that you can't then you have to wear a mask throughout flu season. I hate the mask but I hate GBS worse. I read it in the literature too but I just know that Tetanus shot caused my body to do this. I may take the flu shot one year but for now I'm too afraid.


#12


Tarhealing, my neurologist said I contacted GBS after I had a flu shot so I just don't know but since I did get GBS I no llonger get flu shots. Since I am retired I don't come into contact with as many people as I used to. It's terrible, isn't it, the discomfort and the fact that nothing helps it!
Tarhealing said:

Mine occurred following a Tetanus shot. I just can't get the flu shot. I know that the flu has the potential to cause me problems but I don't think that I can walk into that shot. No one was there for me medically and I don't think that they would be again and once it starts, I'm afraid I would just be on that ride again and who knows how bad it would be. I know they say that GBS a second time is rare but for some reason I feel that I get the rare stuff or at least that is what every medical doctor I come in contact in my area says. They weren't very supportive and I just had to fight through it and recover the best that I could with Physical Therapy. Even my Neurologist would not commit to say that I should get the flu shot and my job requires it unless a doctor writes a note that you can't then you have to wear a mask throughout flu season. I hate the mask but I hate GBS worse. I read it in the literature too but I just know that Tetanus shot caused my body to do this. I may take the flu shot one year but for now I'm too afraid.


#13

I contracted mine after a hepatitis series, my neurologist warned me not to get ANY flu vaccine…ever. I have read vaccination labels for myself and have seen GBS listed as a possible side effect.


#14

If you are in doubt, read the labels for your self, and use magnifying glasses, the list is long and in very fine print


#15

my neuro says no flu shot she also told me no vitamin b's now i have read where vitamin b helps. my thinking is they really dont know anything for sure,

thanks for the replys


#16


My neuro also said no flu shot and I agree, they don'tknow anything for sure. My neuro just sits and looks at me and tries to find a solution but no luck. Maybe eventually .>>
kel said:

my neuro says no flu shot she also told me no vitamin b's now i have read where vitamin b helps. my thinking is they really dont know anything for sure,

thanks for the replys


#17

I have been walking almost 4 years now and I still get those feelings.....it sucks


#18

I really hope you all get sorted soon. It is a horrible illness. I feel I can express myself on here. We all have been through either the same or something very similar. Talking on here to you all makes me feel, I'm not the online who has gone through something similar. I went onto the sight gain.and there was 1person who was very rude to me, so obviously I like expressing myself on here. Thank you for listening to me x


#19


mdolich said:

hmmm............ I'm not sure she means "weepy" as in crying, I feel she misspelled "Wimpy" as in, she feels like she's being a wimp when it comes to this disease. But I could be wrong, LOL.

Moo said:

Hi I'm feeling very weepy at the moment. My husband has divorced me because I got gbs very severe, iv been left parralplegic and left in a wheel chair and wheelchair bound.iv got another chest infection. . I was left with a chest problem permanently. I have never felt so alone and helpless ever. Thank you for listening.


#20

I think it’s clear that everyone who survives GBS experiences very different symptoms. Those sympoms direct our reactions. Most of us are affected by fear. Now that I’m facing cancer-and my wife divorced me too, a common symptom- I compare chemo therapy with a flu shot and my fear tends to choose the road less taken.
You need to do what’s right for you. MDolich chooses to avoid flu shots and that brings him peace. After two rounds of flu, brochitus and now cancer, I feel safer with immunizations. Don’t ask about the end result: ask us to share experiences. They’re all different. And I speak of what we endure starting 24 months AFTER completing treatment. None of us are wrong. Neither are you. But do you rise from bed every day? Can you microwave food on your own? Can you bathe yourself? Are you able to wash? Change your sheets? Keep track of your meds? Remember nouns? Can you read for more than 15 minutes? Have you the energy to relieve yourself in a urinal? When a cat sits on your lap can you tolerate the pain? Have you the energt to get the mail? Bring in groceries? Respond to mail?
We’re all different and there is no wrong way to cope. Yes, I get immunized, particularly given what chemo does to the immune system. “Weempy” is a brilliany word and credit to you for coinage. Most of us weep alone for many reasons. We already know how GBS harmed and scared our children, friends, family. Inoculations are part of that. Guilt. It’s there.So we don’t weep in front of them though at times we want to-we NEED to.
Cancer could be a gift. Stay with me. A get out of jail free card to put an end to the dateless, lonely, painful lives we have. But my mother’s still alive. I have two 20-something daughters, a 3 year old granddaughter and though my daughters are painfully leaving it up to mr, my mother is insistent that it’s my duty to fight the cancer. She’s 80 and wise. Guilt. And fear.And chemo-therapy.
So tomorrow I’ll drive 130 miles round trip and sit in a naugahyde chair with three others for four hours, court TV above&, books, and conversations. Pot brownies from Cliff’s wife. A flu shot? Maybe it’s easier for me. Maybe I’ve had good luck. There.
In 1980 there was a 26% increase in GBS. The CDC and other agencies did research to find a similarity and they stopped at discovering they’d all had a flu shot. the FDA wasn’t conducting research but was, by law, given these results. If one is testing a new medication and has 1,000 subjects and even ONE subject reports a headache, by law it must be listed as a potential side effect. But if there are two areas of medicine that requires more understanding it is the brain and the nervous system. Until 2007, it was believed that we used only 10% of our brains. Does it make more sense that we’ve no idea what the other 90% does? Think: the world was once flat. The universe revolves around the earth. Preserve bodies in Pyramids for their return. Blood carries evil spirits. People with behavioral dissorders were withes; then possessed by demons. Are you prepared to say we understand it all? That GBS-the cause of which is STILL unknown-is to be left in the hands of only doctors and social media support groups? No. Trust yourself.
I had hoped that this would be a forum for sharing experiences; for finding camaraderie; to weep openly. Instead, because of our individual isolation this is more “Should I”, “Have you?”, and “Am I?” A much needed forum, but patients from 1980 are here with patients still overcoming paralysis in a high tech rehab.
Read all of us. Read Joseph Heller, FDR. talk to neurologists, immunologists, infectious disease specialists, psychologists-8everyone. Educate yourself and then trust your own judgement first. No one knows your body as you do.
My first flu shot scared thre hell out of me, but I looked at the recurrence of GBS, the triggers in CIDP and with terror, signed 14 pages of release forms. I was more fatigued for a few days after inoculation. Not since. Am I lucky? No. Because relapse of GBS is far more rare than GBS. I’
Was a musician and composer but now I use left brain statistics and common sense and what is right for me.
How many people who’ve told you they will never have a flu shot had even ONE thereby being able to give you real feedback as to what happened? Discount them because within your sample group they do not meet the standards by which you need to measure.
Take control of your body, your health care, your LIFE.
If I can do more: dnseaman62@gmail
Dave