northernguitarguy
Your Replies
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September 9, 2010 at 8:28 pm
[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
September 9, 2010 at 1:38 pmHello Harry
I am dealing with the same issue for my boys. They have been recommended for menactra shots, but Lisa and I are not having it done. What is the likelihood of a meningitis outbreak anyway?
September 9, 2010 at 9:40 amHey Liz
Sounds great. I would love to go but I dont have the dough. Driving to Pennsylvania might be dodgy as well.
September 8, 2010 at 9:23 pm[QUOTE=Hedley LaMarr]I have met two people who have recovered fully. What is full? They walked into my hospital room to visit me on their own two feet. One had an 8 month episode and the other was 2.9 years. I don’t know what their residuals were and I did not ask. Both were in their fifties. One lady and one man. I’m in my 19th month of illness and using a walker to get around safely because I have not healed from below the knees downward and remain with drop feet. At the end of the day these legs feel no different than the dining room table legs. So I wait and wonder: is this the best I will ever do? My Neuro tells me that the longer you go, the less your chances for a full recovery. I know things could be worse in life, but of course I am just concerned with myself. Should I feel guilty about that? I don’t think so. I hate this illness and my heart aches for those worse than me. I have given up the anger because it saps your energy: a word of advice to others. And self-pity can pull you into a dark hole. It is a trick to stay buoyant, a balance between being grateful for other things and saying to yourself “it could be worse” which is solely your personal province to say. Meanwhile, I thank you for your answers to my question?[/QUOTE]
Wise words Headley. I agree the anger will get you NOWHERE. And nonsense to feeling guilt for showing concern for our health. I miss good health because of the things I want for myself, but also for the things I could do for others. Plenty at stake when it comes to our health.Boo to the Neuro!!! A**hole should never have told you that. I agree with Carolyn, fight the good fight. I was told that my hands might have long term residuals by PT [B]and[/B] that they would be fine by my neuro. Who do I choose to believe?
My guitars are not for sale because I refuse to believe that I will never be able to play them again. Django Reinhardt was one of the best (and fastest) guitarists of all time and he could only use two fingers on his fretting hand because of deformity. And Tony Iommi from Black Sabbath sawed the tips of his middle fretting fingers off in a woodshop accident. He made some wooden prosthetic fingertips and went on to create a totally unique guitar sound. This was forty years ago and he’s still featured in current guitar mags. Should they have not bothered to play?
Dude, I would rather accept blind folly then surrender to this.
Never say die.:cool:
September 7, 2010 at 11:10 pm[QUOTE]Society makes it seem that as we age, we have to take more pills to keep performing at our peak. Now they are pushing Low T (which an acquaintance is taking and I have no idea how his family is living with him!) so men feel young and vigorous again. Between all the “keep it up” the “get up and go” and the “instant red cape” pills they are insisting our men need (this is after society tried feminizing them for so long), no wonder everyone feels so crappy. Our get up and go done got up and went. I think you have a point. We should also toss out all the “make dad look stupid” commercials and tv shows. They drive me nuts!! I may not understand everything about men…and vice versa….but I do know they deserve a heck of a lot more respect than they get in society and in the media (and sometimes even at home).[/QUOTE]
[COLOR=”Navy”]I don’t think that I could p*** Lisa off more than by surprising her with a viagra pill. After a while we would both want the thing away from us. :p
Thanks as well for the kudos towards the good men out there. Perhaps we will fully earn that compliment when we fully stop acting like boneheads.[/COLOR]
[QUOTE]As for me…GuitarGuy…there are lots of factors. But his comment just really stung because it was so out of the blue and in the middle of a stress induced argument. He isn’t exactly my caretaker, I do as much as I possibly can for myself. And if I don’t say anything to him, he doesn’t have a clue how I am today. You’d think the chance of getting some action would be a big clue as to how things are LOL! I know he loves me, I guess that should be all that matters. But those small intimate moments are so far between that it is hard not to take it to heart, esp when I am fairly blunt about what I want and need. Anyhow, lots of things have led to our situation, GBS was just the start.[/QUOTE]
[COLOR=”Navy”]So hard to get to romance during squabbles, hopefully some sugar can sweeten the deal. 😀 [/COLOR]September 6, 2010 at 10:40 amHey Hedley
Wow, full recovery eh?
Whether full recovery is possible is often doubted by many forum members. If 1 in a 100 000 is number of GBS/CIDP patients then it would follow that there are roughly 3400 GBS patients in the US and Canada and 66 973 worldwide. Does our community on this forum feel relatively small with these numbers?
And if 70% fully recover do they abandon us when they have recovered?
I suspect that is the case. When I feel down about how long recovery is I speak to my liaison from GBS Canada Foundation. He recovered and was far more afflicted for longer than i was. Now he is back to physically demanding work and weightlifting. He does get fatigued but not in a way that interferes in his life and this is improving.
Speaking with a survivor was one of the most important moments I have had working towards recovery.
I realize that this may be cold-comfort to our CIDP family here, however I have read testimonials of people who have survived this as well.
As to your original question, I dunno. Some here have had it in residuals or CIDP for years in which cases we can say as long as decades.
Where are all the folks who have fully recovered? Greatly enjoying life I hope.
September 5, 2010 at 9:56 pm[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
September 5, 2010 at 9:18 pmMany here have had it done. I think it is to determine what you do not have. There is probably a better explanation from the forum.
As far as I know, GBS/CIDP diagnoses are all symptom based.
Are you facing a spinal tap?
September 2, 2010 at 8:01 pmHello all you positive beat-up folks out there! How ya doin’??????:)
Pool was marvelous today. I swam until I literally could stroke no more. The boys are still loving the pool, they could stay for hours. I wonder if we would have had this fun without GBS?
Feeling great this week. I wake up feeling as though I worked a shovel all the previous day. Only at the end of the day do I feel the symptoms come back, but they are easier to take. Even my mojo feels like it is coming back.
Left hand feels much better and the right almost feels normal at times. My ‘squeeze’ ability has greatly improved as testing proves. I’m not there yet but still believe there is no reason that I can’t be a part of the ‘70% club’.
What went well for you today?
September 2, 2010 at 7:49 pm[QUOTE=codystanley]What do you think, did the flu shot cause CIDP for me?[/QUOTE]
Hey LizI don’t know what to believe on this. I’m no doctor, more of an idiot:D
I had a shot in Jan. 2010 and go hit [U][B]hard[/B][/U] with GBS between May 23rd to about June 3rd when my symptoms peaked. I assume that I would not be considered for a legal challenge due to the time between my shot and my GBS.
For all I know, I am a regular patient, with typical symptoms (another GBS recovering patient thinks that I am Miller-Fisher because my eyes were affected and my upper body was hit hardest, I dunno) and I am on the mend nicely.
At this point I am not as concerned about a lawsuit as I am worried about people getting GBS/CIDP through vaccinations as flu season approaches.
I am skeptical about a conspiracy at play here only because I believe that true conspiracies on a scale this big fail due to loose lips. If it is true then I think that we should not be sitting on our a**es complaining to one another but instead should be hounding the press and every medical attorney we can find.
I’m looking for answers.
September 2, 2010 at 7:15 am[QUOTE=CathyK]Why is it that our country outlawed a natural substance making it illegal when it contains proven benefits for pain, etc. especially when dealing with such horrible effects from GBS, CIDP, Cancer, Glaucoma, etc.?
The alternative is to pump everyone full of chemicals created in labs which contain ingredients far more damaging to our bodies. When patients then become dependent or they develop a tolerance to the med’s and need dosages raised, they are flagged as drug seekers or worst yet they are investigated and sometimes jailed by the government.
It is on the ballot in California this November, let’s hope it passes.
A tip for those who need help going to sleep have you tried the spray Melatonin? Our bodies produce this on our own, but sometimes not enough. It is what helps us fall asleep.
~Cathy[/QUOTE]
There’s a great documentary called ‘Grass’ narrated by Woody Harrelson. The film identifies that the initial hoopla over the plant came as a result from a fear of Mexicans who liked to bring dope with them when they came in search of work/land. Since there was no real reason to arrest them weed was made illegal as a way to bust them. Then paranoia was further spread by the gov’t through Hollywood B-movies and laws were tightened to resemble what they are today.Again as I mentioned earlier, Canada and the US have the highest reported usage in Western countries (even higher than Jamaica!) and the most serious penalties surrounding prohibition. The US is the only country to have developed a marijuana counter-pop culture. There is no European equivalent to ‘Cheech and Chong’ or ‘Dr. Dre’ or ‘Harold and Kumar’. That’s because dope is an issue that registers a shrug of the shoulders and give fines for simple possession in Europe. They use half of what Canada and the US do.
As long an there is sunshine, rain and seeds it will be impossible to stop the growing of grass. I find it so odd that in both countries, the politicians that scream that gov’t is too big and taxes too high are the chief proponents of prohibition. They need to grow up. I’m voting for libertarians in the future.
September 1, 2010 at 2:47 pmNext week my boys will be back at school and I will be home alone and happy about it. No bitterness here at all, I just like my recovery largely alone. Not hermit-like but my days will be to myself. I enjoy seeing folks and also like when they happily leave me alone.
My circle has been very good to me. Cleaned out my classroom at work on Monday and colleagues were gracious and kind. They wished me well and said I looked good. I’ll take these comments as compliments as they came with an understanding from them that I am aching inside both physically and a bit mentally (it was hard fully realizing that I’m not going back to work).
I have given up on expecting healthy folks to understand how I feel. They simply can’t. I wont call it insensitivity because they haven’t walked in my shoes. I often wonder about whether I would be so understanding had I not got hit by GBS. I also believe that I have become insensitive to what I feel are people’s minor complaints. I was ready to kick the a** of an artist friend of mine who opined that he would be so much happier in Florence. Prior to GBS I might have been remotely sympathetic.
The people who matter see that I have made incredible gains and I enjoy their compliments. I feel so much for you out there who cannot feel healing. And for those who ‘closed up’ and are fighting to get back I am humbled. As my case is considered ‘mild’ I should be mindful of my GBS/CIDP family who have it worse than me.
We all seem aware that GBS/CIDP has opened our eyes to look at more important things in life and to understand whose opinions matter. I suppose rather than being annoyed by people not understanding my limitations I am frustrated by their not understanding my capabilities. I appreciate offers of assistance but really get p***** off by the [I]insistence[/I] of help. And I am very weary of folks who I feel the need to cheer up because they are so saddened by [I]my[/I] illness. Spare me and feel for the terminally-ill, Chilean miners, Pakistani flood victims, Haitian orphans, women of Darfur, Vancouver junkies, the kid down the street whose father kicks the crap out of him, etc., etc., etc.
September 1, 2010 at 2:01 pmHey Jessica
Please keep up to date with the attorney’s findings. I am by my estimation out of the window at 10 weeks (if that is the legal criteria) as I think I am more likely 15 weeks.
If it’s a conspiracy then it is well-kept by the medical community’s solid wall defense. Even the GBS/CIDP FI recommend getting flu shots in their literature.
I smell a class action suit…..please keep me informed. Still wondering about other vaccinations and my kids. Some are mandatory for them to be able to go to school.
September 1, 2010 at 10:29 amI had my flu shot at the beginning of January but developed GBS symptoms at the very end of May. I still do not see the link in my case and no doctors or anybody else from GBS/CIDP FI believe that was the cause.
I will however (on everybody’s advice-including my doctors) not be getting one this year. I agree with Carolyn that a lot can be done through better health.
However, I do have a dilemma. I have had a flu shot every year in the last decade because of being hit every prior year by the bug. I did miss it one year and guess what, I was hit by the flu. This could all be coincidence but is hard to see (especially for me, no faith of any kind here-I gotta see it to believe it).
Also, as I sit here looking at my sons’ meningitis prescriptions all of this is starting to freak me out a bit. Can the GBS reaction happen (1 in a 1 000 000 of course) through any type of vaccination?:confused:
best to all
August 31, 2010 at 8:12 pmHi Mark
Thanks for the call and the update. I’m glad that you snagged some more rest time. I have been given the green-light until at least january. I hope I wont need that long but who knows?
I am looking forward to next week when the boys go back to school. The house will be quieter, so will the town. I should have my home studio up and running (still waiting for one part) and will have the time to mess around with it to get past the learning curve. Still waiting for my left hand to loosen up so I can play a little. I haven’t had the heart to practice because it sounds so bloody awful.
Good for you for getting the pharmaceuticals out of your system. I’m not sure if my meds are actually helping, but I take them anyway. A couple of beers seems to be a better fix if it weren’t for the big belly that comes from brewskis.
I still say that distraction has been the best medicine. I’m glad that I can be easily amused:p
