Getting old at a very young age.

Jana,
With pain your body is telling you that something you are doing is harming it. You don’t want pills to shut it up, you want to find out what you are doing wrong. If you continue doing the wrong things for it, it will get weaker and you might come down with other things. Not getting enough sleep is dangerous …. exercising too much after GBS is not a good thing either. Do not compare yourself to everyone else. I have spent 40 years studying wholistic health and tweaking my body to make it heathier each year. I eat according to my bloodtype, take tons of supplements, and get lots of sleep. Just recently I discovered a supplement that is making my receding gums stop and reverse. My dentist is going to be surprised becase she said there was Nothing I could do..HA! I survived GSB twice nd am not on any pain killers or medication. MUst be doing something right. Won’t bore you with the detalis…if this makes sense, check some of my past posts.

Jana,

It may be your body telling you to take it easy for awhile . Sometimes you just need some extra rest and give your body a break . I know that is hard when your 21 but it may ward off something bigger . Maybe you can try some Tylonol and rest . I would say if that doesn’t give your body a boost maybe you should go and see your doctor ?? It sounds like you may be having a “flare up” . When I do that ….the rest does wonders !
I hope you feel better soon !
Kimberly

[QUOTE=miss_jana]Everyone in my life looks at me like I’m completely normal because I don’t have some kind of physical defect showing that I have a disease, so when I sleep late it bothers everyone, when I can’t move after trying to exercise everyone says I’m whining too much. I just want to get back to my normal self so I won’t cause so many problems. Does anyone know of a non-drowsy pain killer that helps nerve pain? As a matter of fact can anyone explain to me how to go about getting some kind of pain killer?[/QUOTE]

Hey miss j, nice to meet you

I am feeling a lot of concern for you right now. 🙁

That you are looking for a pain-killer makes me wonder what your doctor has prescribed. All pain-killers come with a price, they’re narcotics. Some can be quite addictive and others could cause allergic reactions that do not mix well with damaged nerves. I had a reaction to oxycodone (‘hill-billy heroin’), prescribed by a doctor that I will never forget. I had deep and intense, relentless itching all over my body for 3 days. I had used this prior to GBS reluctantly and only for severe sciatic pain I would get 1-2 times a year. Never again:eek:

I am reluctant to advise you in any way as I am not a doctor. I do believe that the management of pain is paramount to recovery to any illness. I use advil but wonder if it does anything.

Also, contact carolyn about vitamins and supplements. I think that a high fiber and protein diet is important.

The people in your life need to be educated about how you are feeling. There is good material on this site including links to streaming video that may help.

There are also good people on this site to be in touch with. We are a strange bunch but are united by this weird illness.

Best to you and all the GBS/CIDP family

Even at the late stage you are in it is still necessary to get plenty of rest. Do not let anyone down you for doing what is right for your body. You know what is best. I understand people have no clue what you are going thru, and all I can offer is my prayers that you will get better soon. God Bless

I feel for you! Pain in gbs in my opinion is not addressed as it should be! I feel terrible pain, weakness,fatigue,muscle pains & twitcing. I have been on lyrica 300mg 2xday for approx. 4 yrs. It helps some and its not a narcotic. we just need to stay on our dr.s case letting them know we are not normal feeling just because we look ok. I really don’t even talk about it to my family anymore, just try and suffer in silience. I am so happy to find this web site! People know what I feel like! Hang in there and just keep trying!

Have you followed up with the doctor? You mention that you had GBS/CIDP. If you have CIDP, possibly you need treatment. You need to check with the doctor and have tests done, at the very least bloodwork, to make sure nothing else is going on. The doctor can also prescribe pain meds if necessary. There are several members on here who have undergone stem cell transplants for CIDP. You are young enough that you should look into this if CIDP is in fact your issue. Good luck and hang in there. Even when there are bad days, you need to hang on to the memory of the good days and that will give you hope and bring you back up.

[QUOTE=miss_jana]I was diagnosed with GBS/CIDP when I was 13, I’m 21 now. Up until the past few years I lived a practically normal life with the exception of a few handfuls of vitamins every morning. I could do everything any other teenager could do, I was in sports, hung out with my friends, stayed up all night, worked. But here in the past 6 months to a year I’ve noticed that all my symptoms seem to be getting worse. I twitch constantly, I have the hardest time remembering things or getting organized at all, my neck and jaw ALWAYS hurt, and now my body is in so much pain it makes me question if I’ll even be able to stay working.It’s so bad that I can’t turn over in bed in the mornings. Everyone in my life looks at me like I’m completely normal because I don’t have some kind of physical defect showing that I have a disease, so when I sleep late it bothers everyone, when I can’t move after trying to exercise everyone says I’m whining too much. I just want to get back to my normal self so I won’t cause so many problems. Does anyone know of a non-drowsy pain killer that helps nerve pain? As a matter of fact can anyone explain to me how to go about getting some kind of pain killer?[/QUOTE]

I was diagnosed at 34, CIDP with some weird protein Im now 35 4 kids and wishing I was back to normal, Advil can sometimes relieve the pain a little but does not last. Rest helps, I find I have to sometimes remind those around me that I’m still sick. Going from almost complete paralysis to walking around they sometimes forget. I myself need to remember to stop and take a breath so I don’t go completly backwards. Soaking in water has helped in the past before my central line. Helps relieve stress…I hope you find some relief soon.

[QUOTE=margaret mary]I feel for you! Pain in gbs in my opinion is not addressed as it should be! I have been on lyrica 300mg 2xday for approx. 4 yrs. It helps some and its not a narcotic. [/QUOTE]

Agreed MM. Lyrica is supposed to ease nerve pain. I’m on it and not sure. It seemed to ease the pain in my hands but it has not been a miracle for me.

Muscle pain? Here you are back to using narcotics.

A couple of non-medicinal things have worked for me. Massage therapy has been wonderful and the hot-tub feels really good. As well, I have been on a super-vitamin kick and well, things are getting better. Not sure what is working. I’m like a pitcher who goes through weird rituals to keep a streak going.

Good luck in search of relief

hey, iv been a wall from this site for awhile but just saw this post, hope u check for more updates and see this..

I was hit with GBS when i was 17, im now 22… i was a super active girl all my life and everything came naturally to me. the last 4 years have been a crazy slow recovery process for me i still need a wheel chair for long diistances or days im just to tired. i have NO sensation anywhere on my body. (try walking when u cant feel ur feet) LOL…. i also deal with alot of pain on a regular basis i was on gabapentin (how ever its spelt) for the first year post GBS but have since then stoped taking it because it upset my tummy. i now take Oxycocet (when the pain gets realy bad) but like many say its a narcotic…. my opinion is if it lets me function and do what i need to get done in the day then im fine with it…. (my GBS doc agrees)

I totaly get what ur saying about feeling like people dont understand and can relate because u (dont look sick) i found this story and i find it helps amazingly when im trying to explain to people ill atach the link at the end. there are so many days whn i wish i could just be normal again and do all he things i should be doing.. im 22 and i still havent had a part time job i dont have energy or endurance for it (YET)

I feel like iv blabbed on and on but when read ur post i just felt like u were explaining my life ! id love to chat with u more… its nice having someone ur AGE … not to say all GBS survivors cant relate but when ur at the same point in life its different. so if u wanna MSN me [email]Duck_tape_girl@hotmail.com[/email] or if u search me on FB Cynthia Barber

i wish u all the best if i dont here from u

(the link to the story)
[url]http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/[/url]

Since it’s been mentioned a couple of times in this thread, it’s worth noting that long term use of ibuprofen (Advil, Motrin, etc.) is known to cause stomach ulcers. Don’t ignore “heartburn” if you’re taking these for pain relief.

Also, long term use of acetominophen (Tylenol) causes liver damage.

[QUOTE=olav]Since it’s been mentioned a couple of times in this thread, it’s worth noting that long term use of ibuprofen (Advil, Motrin, etc.) is known to cause stomach ulcers. Don’t ignore “heartburn” if you’re taking these for pain relief.

Also, long term use of acetominophen (Tylenol) causes liver damage.[/QUOTE]
hey all

thanks for that olav……for me nothing has been better for muscle pain than massage which can get very pricy….also have been doing serious stretching which has helped….shark liver oil is reported by some as being helpful overall….

[QUOTE=olav]Since it’s been mentioned a couple of times in this thread, it’s worth noting that long term use of ibuprofen (Advil, Motrin, etc.) is known to cause stomach ulcers. Don’t ignore “heartburn” if you’re taking these for pain relief.

Also, long term use of acetominophen (Tylenol) causes liver damage.[/QUOTE]

NO ONE HAS MENTIOND THIS TO ME and i deal with ongoing heart burn my doc just gave me prevocide (not sure spelling) and to take tumbs… the heartburn hs become increasingly bad the last few days …. unbearable… how do i go about being tested for stomach ulcers?:eek: :confused: im trying not to panick but im worried…. i remember mention of one before when i was in hospital..

[QUOTE=synthia]NO ONE HAS MENTIOND THIS TO ME and i deal with ongoing heart burn my doc just gave me prevocide (not sure spelling) and to take tumbs… the heartburn hs become increasingly bad the last few days …. unbearable… how do i go about being tested for stomach ulcers?:eek: :confused: im trying not to panick but im worried…. i remember mention of one before when i was in hospital..[/QUOTE]

First, your doctor is the only one you should listen to. But do point out to him that you’ve been taking NSAIDs for pain relief.

[url]http://digestive.niddk.nih.gov/ddiseases/pubs/nsaids/[/url]

There’s nothing to worry about: an ulcer is no different than an open sore, except it’s internal. Your body deals with open wounds all the time.

BTW, I discovered this because my unbearable heartburn was misdiagnosed. After months of changing my diet I stumbled on “kefir” — a probiotic that seemed to ease the pain. It reduced the pain enough that I was able to use a referred pain chart to diagnose a stomach ailment, and from there it was a short hop to NSAIDs.

I’ve been dealing with a similar situation the last year. I was 21 when diagnosed. After about 2 years I felt basically recovered. The occasional flare up and constant dull pain but other than that I was ok. Then this year hit. I’ve been having flare up after flare up this year. I thought it was just my job getting to me. It was extremely physical. So when I started a desk job I thought for sure things would get better. Not so much. I resorted to taking neurontin again. I quit using nsaids a long time ago because of my stomach problems (it empties too slow) and all the bruising. Im still in pain and dealing with all the numbness and tingling. Exhausted beyond belief. I just hit my 7 year mark and can’t help but wonder what this means. Im 28 years old and should be out enjoying life not anticipating 5 pm so I can go home and take a nap. There seems to be more and more young people on the site recently. I don’t post often but I read almost daily. It just seems that theres been a shift and that concerns me.

I got GBS when I was 20, and still to this day I feel like an old woman at times. Recovery is so slow I feel like a turtle; it’s so hard to do a lot of things. It’s nice to hear from other young-adults dealing with this too.

thats why were here, to support each other! we are the only ones who can relate to each other. stay strong, and be positive. somedays are harder for you and xim here to hold u others are hard for me and i know i can turn to u.

best wishes to all us GBS’rs