Jojo,
Thats alot of stuff to do!! Have you gotten your ivig yet?

I can’t imagine doing everything you did in one week! A trip to the hemotologist did me in for the rest of the day today. I haven’t been released to drive yet, so I can’t run around – if I stop at Joann Fabrics or Michaels after church I am so exhausted I can’t do anything for a couple of days. I think rest is the biggest prescription for this gift we’ve been given. It’s getting late (almost 8) so I think I’ll tootle off to bed – – –

Jojo,

I know how you feel about the brain and body thing. I feel quilt cause I’m home all day and can’t get much done. I managed to clean the bathroom today but it took me three hours! The rest of the house…well lets just say I’ll tackle it over the rest of the week. I can’t vacum so I rely on hubby or son to do that for me.

Try not to over do it, we need lots of rest.

Rhonda from Canada

JoJo,

I just think bout doing those things. I don’t have the energy to do more than one a day on a good day. But I’m moving so I’m not complaining. I’ll take one day at a time

It seems like everyone says that you need to listen to your body and not overdo it. I felt pretty good Sunday, so I went to lunch with a friend and Kohl’s. I knew that was probably enough, but I thought well, I’ll just run to Target. Then when I got home, I was on my feet for several hours taking care of my kids. Yesterday, I had a HORRIBLE headache all day, and was crying at my computer. I knew I should’ve listened to my body after Kohl’s, but I was just so excited to be able to do things. A few months ago, I would not have been able to do this. It is hard to take baby steps and not to take full advantage when you have those good days. I am learning though….

[B]NOT![/B] Chill, you’ve been outta work essentially w/your body, and it takes TIME and a heap of patience and PLANNING to do things from now on.
You have had a SERIOUS INSULT to your body! Take that and learn as much about this insult and go and do what you feel is right. For atheletes? An old saying was: One day off-training? Three days to get BACK to the day before. No one is gonna just ‘wake up’ and go as if nothing’s happened. Doesn’t happen. Much as we wish it!
But, put your ‘patience hat’ on, and get to work regaining everything you can from all you have lost? And you mite just beat this beast.
We are lucky that we are not ‘abused animals’? Because we CAN speak and ARTICULATE what we feel. I watch animal rescue programs, because those silent creatures can and do give me hope. Truly, I’ve learned lots from my creatures, in that while they can’t ‘speak’ their body language and motion DO tell a good and often complete tale.
Patience, faith and heart are what will get us where we need to be…plus a few good docs or three! Don’t lose hope! Lots of us here have been down and now aren’t. Hope and other good things now!

Jojo it’s okay to sleep after a lot of activity as your body is saying you to need the rest. The important thing is you did go out and did things that you wanted to do. My husband has CIDP with an atrophied rt. hand and arm and foot drop, and I have secondary progressive MS. My neurologist told me years ago “don’t become your illness. Do all normal activities that you are capapble of –just take frequent rest periods and carry on”. I have done this for 20 years or so. I might feel tired, and not walk as well or fast as others, but I do everything. I just take frequent rest periods i.e. I might shovel horse manure for 10 minutes and rest for 15, and then shovel another 10 and rest again. I have encouraged hubby to follow my same strategy and it works for him too. In fact he was vegging in the beginning because the diagnosis was so discouraging and losing strength in his arm and leg overwhelmed him and made him feel handicapped and clumsy. The more he vegged the less energy he had. But he is over that hump now and is back to tiling floors, mowing the lawn etc. He just rests frequently and sleeps in if he needs to. He might sleep an extra hour or two in the morning after he has done an activity. And before his IVIG is due he tends to do less and rest more. But I think he was becoming his disease in the beginning and now he understands the disease better, and sees the practicality of the frequent rest periods. i.e. he can do lots of the old stuff as long as he paces himself. But I do have to remind him to stop and rest as he tends to push himself too hard forgetting the consequences of omitting the rest periods. Do everything you can Jojo, but rest in between and don’t be afraid to tell others you need to rest frequently.
Laurel

So sorry to hear you are still having a hard time Jo. I get ya, I am right there with you. I tried explaining on the SSI papers that I have to pick and choose where I use what energy I have. If i go to the grocery, that is ALL I do that day. If I run a couple of much needed errands, that is ALL I do that day. Why can other people not understand how exhausting it is just to do normal every day activities? Laundry…that is my day. Some days i feel awesome and go for it with gusto! The new med helps in that dept, BUT I have learned another lesson with it. Yea I may feel fine but if I push it, I pay big time! Thankfully my family gets it, and allows me to rest or sleep when I have to. I keep thinking stubbornly, that at almost 4 years I should be so much better, healed, ready to get back to my normal life. Sure I can do things I couldn’t at the 6 month mark or 1 year mark, but this stuff hangs on like nobodies business. I still am unable to accept that this is the new normal. I know I should take hubby’s advice and it may help me “heal” in other ways, but it irks me to think ‘accepting’ this is ‘giving up’. But, the pain and fatigue tell me otherwise….

I sure wish I had a magic wand and could make all of us better again. *sigh*

you will feel tired after IVIG,I usually dont do much after I take it. Working it s hard specially after IVIG or if you have been in the hospital for several weeks. I ve done it many times. It took me a while to learn to listen to my body, and to learn to say no to people.

After I learned that my health was first,people always wondered why I became so anti-social, not wanted to go out as often,leaving early,saying no to activities I would have done before. It s hard to explain it to them. But if you dont take care of your body,nobody will.

And it s not that you become anti-social, you just know or should understand that our bodies with our condition have to avoid certain things in order for us to feel better and have a better quality of life knowing our limitations.we cant afford to be around sick people (meaning colds…lol,germs,etc) . But only you know what s best for you.

Wish you the best.
Rossana

I agree with Rossana, plus it’s not anti-social, it’s protecting your own life. It’s also knowing how dearly you will pay for social events, or socializing. Our fair weather friends will soon be gone, only true friends & friends in the same boat will remain.
You are in my heart & in my prayers.
smitty

Thank you Jojo for bringing up an essential reminder for all of us. I have found this acceptance of limitation a process. Sometimes a real trial and error sort of process. It has taken me a total of 9 years of getting to the point where I now actually enjoy the leisurely pace of my life. I get to pick and choose what I do and now it is usually only things I enjoy which I never used to get to do until I got all the “have to do” things done and then ONLY if I had energy, which I usually didn’t. I have found guilt to be the enemy and a lot of mental adjustments and retraining to be the weapon of combat. I also try to get through the medication side affects and exhaustion with an attitude of curiosity and non-resistance. One minute at a time becomes the pace of life. I wish you well with this process and am glad you have this place to use as your support.
All my best,
Linda

Hello jojo

Things sound really tough. Working through GBS/CIDP must be so stressful, but I hope that it can count as physio. I am counting everything I do as therapy, why not? In OT they had me putting nuts and bolts together. I’d rather count making coffee as exercise. I send my hopes and wishes that you will remain strong and will have some better days ahead.

gentle hugs

Hi everyone I am so frustrated and in so much pain and weakness I don’t know what to do. I had the full course of gbs in 2000. I was diagnosed with Cidp about 2 years ago. I am continually getting worse. My husband was diagnosed with colon cancer in 2007 and ended up almost losing his leg due to over treatment of chemo and radiation and lack of proper care by doctors. He also ended up with a colostomy bag. It changed our lives forever. He was cancer free for almost 3 yrs then in jan 2010 his cancer came back and had metastasied to his brain and lungs. Needless to say that threw us both for a loop. My husband who was really the only one who ever understood the fatigue and pain I suffered for the last ten years. He was also my helper and shopper, best friend and shoulder to lean on until he was diagnosed with the above. I became the major caregiver and everything for him even in my state of health and am still the most tremendous stress I have ever experienced. He passed away on June 18th 2010 at home after being here in hospice care for 6 months. It has been a very long road and very much stress on me both physically and emotionally. I have had extreme pain in my head, neck and shoulders since January. Every time I looked at my husband, my head felt like it was going to explode with pain. I have been living off of Darvacet and valium. The last few weeks the pain has subsided in my head and shoulders and neck, but now I am having severe muscle spasms and cramps in legs and feet and as usual I don’t sleep. I cat nap all night because the cramps wake me up and my legs and feet are numb, tingly and feeling like they did when I first became paralyzed. Life does not slow down and I don’t have that much help from my family, they think I can get my head into a better place psychologically and get thru this. RIGHT! They have no idea what this ordeal and the loss of my husband has done to me and the assault on my already assaulted body. My doctor wants me to go on lots of heavy meds that have very serious effects, I only want to be out of pain and hopefully in remission for a few months. Rest is hard and stress is great trying to sell my husband’s business and take care of what the world requires. Cannibus seems to help as long as I can rest at the same time. They weren’t kidding about CIDP becoming more chronic as you get older and increased morbidity occuring along with a decreased life style. Not to mention bladder issues, wondering if any of you women experience this, they say it is part of the CIDP If you believe in prayer, please send some up for me. I am devastated. Thanks, Bunnyrarebit – p.s. my sons think I should take a vacation – i can hardly get out of the driveway and to the store much less travel especiall on a plane with my leg cramps.

Hello Matt and welcome to the forums 🙂

GBS, its residuals, doctors, insurance, all or one of those things can be frustrating. I also deal with a few GBS residuals, well, at least I think they’re residuals; foot drop, fatigue.

No one on this board will feel that you’re looking for sympathy as many of us have and still feel the same. It does help to let it out, vent, whatever, especially with others who can relate.

You aren’t rambling….at least, I don’t think so. You should see my lengthy posts. 😮

I hope the issues are quickly resolved with regard to your disability benefits.

Take care and best wishes,

Tina

Hi Matt: Sorry to hear of your troubles. I got GBS five years ago and still struggle with many of the residuals you describe. They are not at all uncommon. You seem to have the impression the most people who have had GBS escape without residuals, but it is rather the case that most people have residuals of some kind, though some have them worse than others. I am in the same boat you are-after five years I am told I will not get worse nor will I get any better. I must still use a wheelchair and am on a lot of pain medication. It is true that I have not improved nor gotten much worse since the middle of year two, so after three years I believe I am not likely to get any better, though it may be possible. No one really can tell you as we all are different, but every year that goes by without improvement makes it more likely you will stay the same.
Most doctors I have dealt with don’t like to talk about residuals, perhaps because they can’t cure them. I have a great physiatrist though who works with me on controlling them and is also a straight shooter when I ask questions. He recently confirmed that my neuropathy has gotten worse though it was not what I wanted to hear. My regualar doc also works with me on them and understands much of what I go through. Finding the right doctors is critical to staying sane with residuals. Like your insurance company many pretend they don’t exist. Keep on fighting to be seen and to get what you need. I think most if not all of us have been frustrated dealing with the aftermath of GBS. I wish you the best. Jeff

My neurologist actively worked as my advocate with my insurance [B][U]companies [/U][/B](I transitioned from one company to another after being laid off March 2009) successfully to ensure my Plasma Pheresis treatments were accepted.

If your doctor is not actively working your insurance company, you might approach him/her and see if he/she is willing. A health care provider should be willing (remember they work for you). If not you might want to seek a neurologist who will.

These diseases are tough enough to deal with alone without all the insurance issues. I hope you get resolution quickly.

Gary

That is terrible that you have to fight with the insurance company while dealing with your other issues. Do the people processing the claims have any clue what it is like to have GBS and deal with residuals? No. Keep fighting, and try to find a doctor that will help you. I keep seeing people post that doctors don’t like to deal with residuals which is very discouraging. Maybe there are alternative methods such as acupuncture, diet, etc. There should be like a wellness center/spa place for people like us! 🙂

I sympathize with you, although I know that is not why you came here. I know people in my area who had GBS & seemed to make a complete recovery, but still suffer debilitating fatigue. I do think that most of those who suffer GBS do make a full recovery, but many are left with residuals. I am 8 years out now & am left with total foot drop so I need AFOs on both feet & use a wheelchair when I need to do long distances (zoos, amusement parks, craft shows.) My hands are still damaged, although I can do most things I need to do with them. Could I ever return to my previous job as a teacher? I could not see myself working in any capacity, it is not the numbness below the knees, my damage to my hands, or anything else people see; it is the FATIGUE, a fatigue so difficult to comprehend that it is impossible to explain it to anyone other than many on this forum. I need 10-12 hours of sleep a night, most days I feel tired all day, I don’t think I ever feel “normal.” Keep working with a doctor who is understanding, & keep on fighting for that diability. I wish you the best of luck…

so sorry you are frustrated with this. what i have found is find joy in the passions you have. if you have lost the ability to enjoy those passions, mine was trail running, find another. i have now found tying flies for fly fishing. i wish i could say different but i am finding that recovery from gbs means accepting what you have.

try contacting the national organization for rare diseases. gbs is listed and they just had an informational event this weekend. there is a chapter in danbury connecticut on kenosia avenue. i havent had a problem with the insurance company yet. but its early in the gbs mess so far. i was sick from july – oct and now have drop foot, paralysis, fatigue, and plenty of pain, just like everyone else. it is a nightmare. my g.p. has no answers and i dont really get why i have to keep seeing him other than to get rx for physical therapy. the neurologist doesnt want to see me past the inital post hospital appt. i dont get that either. i guess the coma, trach and paralysis didnt warrant follow up. the only problems i had so far with the ins. co was that they didnt want to pay for in hospital pt so i was shipped out to a sub acute care facility that was a perfect nightmare although it was listed as the best connecticut has to off and then ins. wouldnt pay passed 2 weeks. there is always a patient liaison or the social worker at the medical facility or hospital where you received care. they should be talking to the ins. co about the “rare disease ” staus of gbs and the kind of ongoing medical care you require and helping your fight for coverage.

I too am very frustrated. I still have pain. my memory is like swiss cheese wich causes anxiety and frustration. I was sent for testing and results were not positive. I already knew that my memory was poor. but the dr.s always need to confirm. I struggle on a daily basis and people do not understand. I was diagnosed 2007 and currently cannot return to work with such problems affecting cognitive thinking. I keep my chin up and try to keep a smile. but it’s hard.

I am very new to GBS, and still live with the hope that, as my doctors say, “This will be over in a year, and you’ll be back to normal.” If I have learned anything by being a member of this forum it is that many, many people continue to have “residuals.” I, like Pam, teach – and I pray that I’ll be able to overcome the overwhelming fatigue that consumes my days, even with 10 hours a night.

I think that whether we are new, or have had this problem for years, the only people who can really understand GBS are those who have lived through it. (as a patient or a spouse) We have to have a place to vent, and a group of people who understand.

I believe this is that place.

Hang in there – and keep fighting the insurance companies – and enlist your doc’s assistance. Most of them realize frustration and worry impede healing.

Try to smile – and ask Harryb for one of his glasses of wine! Might help.

Hey Matt,

I’m frustrated with being frustrated for over 13 years. Each day is different… Today my attitude is ‘this sucks’ then my next thought is denial. I do pray that each day I have a perception of me in a way that is perfect for my life. I know… not making sense, just another day. ***big sigh***

Oh Matt, one thing – this is the best place to be! YOU ARE NOT ALONE!!!

My son was diagnosed with GBS at 17 months old. He will be 4 next month. He is doing great, but like most… has residual effects. His are the fact that he has no reflexes (that can be found) and his voice is very unclear (could be developmental or nerves could be damaged, they cannot determine this early). I wonder (especially asking Pam and Cathie, teachers, I am as well) how should I address this with his teachers once he starts school? He does get tired very easily although of course a 3 year old will just fuss rather than sleep. I do not know if it is just him or if it is a residual effect! Also he has temperature issues, he is hot when he should be cold, etc… shaking when it is 90 degrees outside at times! I hate to tell a teacher to pay attention to him so closely and give him special treatment!!! Just being aware should be good enough but here in NC public daycares have to go outside (unless it is raining) 2 times a day for 30 minutes! I have kept him home some days when he has had obvious temperature issues due to not wanting him to be subject to that and be miserable! Should I just use the Dr. excuse and get him out of it? I hate to use GBS as his excuse for every uncomfortable situation etc… watching him more closely during recess… He has no reflexes!!!! Pay attention to whether he is obviously HOT or shaking with COLD, he really feels that way even if noone else is!!!! Uggg, what to do… I am a lucky mom though, noone would ever know he was diagnosed with GBS except those who knew him before and can see the slight differences, and he is wonderful!

Keep at the Dr.’s and the insurance Co.’s it is their JOB!! If they mind, get a new one! I hope everyone is dealing with their own personal effects in the best, most positive ways!! Remember, God will lead you through!!!! He loves us all!! Even my Baby Boy Tucker who will be a stronger and more compassionate Man one day, I feel, because of GBS!

Hi JBeaty,
Thus far we have been very blessed regarding school. Being that you are a teacher you have the upper edge of knowledge of the system. In elementary we did not need a 504, however at the end of 6th they recommended it for middle school to start a paer trail for hs. All that the 504 does is allow for individual accomadations or needs. In our case, we can’t alweays make it all day, currently 45 days missed. We are allowed to turn things in late w/no penal.ty as well, w/ a chronic illness you can get tutoring for one hour at home for every day/half day missed. Because it is chronic, you do not have to miss the customary 30 days consecutively.

Probably the best advice I could give is offer to be copy mom, help at school do projects for the teachers, remember teacher appreciation day. NONE of our teachers expect it they are so awesome, thats what makes me want to do it even more. If teachers see he is not feeling well, they e-mail throughout the day, how awesome is that! In the begining of the year we met w/teachers, principle and nurse and I brough copies of ninds info and my notes for each teacher (not going to lie, I brought some doughnuts and those 4 pak starbucks cold coffee things) I did not need to but I wanted to because I knew I would need their help. I honestly have not had one complaint or altercation in 3.6 years both in elem or middles school.

If you feel you can try to work with the teachers, try. If not by all means get the note!! Good luck keep us posted.

Just one question: Who cut off your insurance benefits? Was it short term, long term your employer????? I ask because I worked in H.R. before I had to take a leave and delt with the same thing with my disability insurance, which I paid for! The ERISA Law covered me when my company didn’t want to sign the waiver for my benefits. Maybe I can give you some advice on getting your coverage back. It all depends on your policy. I would be more than happy to review it and give you my advice on regaining your coverage. With my professional knowledge in the field and personal experience dealing with it, I may be able to help you!
PS. It’s not venting, it’s sharing!;)

[QUOTE=matt]Hello, I’ve oftened wanted to write into this forum as I’m very frustrated with GBS, doctors, Insurance co, the whole thing. A little about myself, approximately 5 years ago I was diagnosed and treated for GBS. It started out with a numbing and tingling sensation in my legs and by the time I had gotten to the hospital it was also in my arms and I was not able to walk into the emergancy room. After a week in intensive care and two weeks of physical therapy at a rehab, followed by months of home rehab, I was able to return to work part time. I have continued to battle the weakness of my legs and arms and the fatigue is terriable, even if I’am able to get 7-8hrs of sleep. I manage to spread my self out through out the day so that I may lead somewhat of a normal life. My neurologist has told me that I probably have reached a plateau, bad thing is its not any better, good thing its not getting any worst. What I have found with my fact finds is there are numerious people who have residual effects left over effecting different areas of their bodies with different frequencies and degrees of weakness with fatigue etc. My frustration is I can not seem to get a straight answer from doctors as there does not seem to be a straight answer as everyones recovery is different, luckly the majority come out of this with little to no ill effects. I’am NOT looking for sympathy and I have a positive attitude towards life. What I do’nt like is when some doctors do’nt know why I’am still suffering and feel I should be back to “normal” that its in “my head”. Then when I have a biopsy it shows definate muscle damage, and this doctor says I did have GBS. The most frustrating part is having my disabilty cut off because “their” doctor some place out west says I no longer have GBS and I have been denied. (They reviewed my medical records except for the biopsy, they didnt have the results, but they had everything else). Now I am fighting the insurance company, struggle to work as much as I can, and try to have a normal life. Is there anyone else who is as frustrated as I am? Are there are GBS survivors whom have similar resdidual issues? (The fatigue, legs and arm weakness, even concentration) I’m sorry to ramble, but I thought maybe it would help if I spoke to others in the same situation. Anyone frustrated????[/QUOTE]

Kevie’s mom,
Hey Dawn, yes I definitely know all about 504s etc… sounds like a great plan to “love up” the teachers with doughnuts etc…. (speaking from one of them, it is AWESOME to have parents show their appreciation). I will keep you informed as the years progress. I know that Kevins ordeal (CIDP) is much more intense on a regular basis and want you to know my heart is with you both. Tucker has his 4 year old shots next week so I am researching them to know what to or not to do with those. Also, have scheduled multiple dates for the shots not wanting to do more than one at a time. It’s amazing how much people just follow what Drs/insurance companies say to do, never thinking “outside the box”. I feel fortunate to know these things and share with all new moms, or moms with younger children being vaccinated etc… that I can. Not that that is what led to Tucker’s situation but that it would have eventually I’m sure had his GBS not become active on it’s own. God bless to all. Happy Easter! We have much to be thankful for!

Both my children (now grown with little girls of their own 🙂 ) went to school under the protective umbrella of special education. One had reading, writing, spacial disabilities the other was AD/HD. I loved working with the teachers to develop optimum learning for the boys, and they seemed to appreciate my interest. As a teacher now I totally love it when a parent shows any interest in their student’s education. I turn backflips (well, I would if I could) when a parent wants to help with 504’s or IEP’s. High school is a way off for you, but public education is getting tougher as funding gets smaller. But a parent that cares is always welcome. So, tell the teachers upfront, and check in from time to time – and offer to help when appropriate. Good luck – how fun to be at 4 years old – it is a wonderful time that goes way too fast!

Hi Tucker’s mom and Cathie, I love helping out and being involved. It seems like a small price to pay for all the help I get. Not only the help, but ALL of our teachers in the 3 yuears and six months have been so comapssionate and understanding. Kevie is so sweet, it makes it easy. Tuckers mom, I do not envy you with the shot situation!! I am glad we are done with ours with the exception of a tetanus booster. Not sure if you guys had ivig with your gbs, but if you did, maybe you could see if checking titers for his immunity to the particular shots you are due for. For instance, my other son who does not have anything was due for the tetanus booster fresh year and I was terrified of the shot knowing the things we know. We checked his titers and they were ok. We did not need the shot. I would imagine with the ivig and the antibodies of 20K different donors, we might get some sort of benefit regarding the shots that they have? Who knows? Good luck with your decisions and thanks for being teachers both of you. It is not a job that gets enough recognition. Teachers really are the people who get our children ready for life! They spend more time with our children than some parents do. So Thanks guys!!

Tucker had 3 rounds of IVIG when in the ICU. He stayed in the hospital a little over a month and in the rehab building another 2 weeks. Who would I ask about “titers”? I am not sure what those are. As of now he is scheduled for 4 different shots. Not fun and pretty scary.

It is a blood test that tests the levels of those antigens. I am not saying ivig gave him the necessary numbers, but it is worth a try to avoid the shots if you can. As well, I am not saying don’t get the shots, it is just a hard place to be in. I have pretty much decided that unless we are on a farm and slip and fall and cut ourselves on a tractor with pig poop all around, we won’t get the tetanus. seriously though. If we should get injured I would access at that time and take it if we need it. we are all in a predicament now regarding the chicken pox, as a booster is needed if we don’t get the booster and they get the chicken pox as adults, sterility or death is a possibility. I just do not know what we are going to do!!

I have gone through the Chicken Pox conversation in my mind a million times. As of now, my mind tells me to do the boosters and avoid the adult diagnosis with that. At least getting the vaccines I will be on alert and paying attention for any GBS symptoms and can better stop the onset if it occurs. Kinda trying to “time” when it may become active vs. just dealing with Chicken Pox if it happens, whenever it happens, or dealing with GBS whenever it becomes active. Neither a good option but at least the vaccines can be scheduled and better observed for side effects. That, at least, is what I am going with now. As time goes by, who knows! I havent decided about the tetanus. Haven’t gotten that far in my research. It’s a crazy game dealing with these shots, with or without GBS-CIDP, what happened to the days when kids could just be kids!!!!???? No flu shots, swine-flu crap!!!! hehe!!! Oh well, God will decided in the grand scheme of things! And THAT, is a comforting thought!

How well said your last sentence was. I will remember that the next time I am confused. Lately that is often. Keep us posted, it was nice hearing from you again!

I’ve been trying a lot of things. Cymbalta is working for me now, but there have been a lot of posts that say it didn’t work for them. Cymbalta is something you don’t want to just stop taking cold turkey. I would check with doc later to day like you said you going to do. After only four day you should be OK.

I have noticed that for some people Cymbalta will work. For others Lyrica works and for some neither works. I know with Cymbalta I read the possible short term side effects and what could be dangerous. Most of the short term side effects were gone with a week or so.

You don’t have to suffer. They just have to find what works for you. Any time you want to vent, this is the place to do it. Most have been there, done that and have the T-shirt. Hopefully you will feel a little better when you get up.

Jim C

but after about 1 week, they went totally away and the drug helped me, still does.

if you want to talk, feel free to contact me–
alice

Fairly Odd Mother….here is a huge cyber hug. Oh how I feel for you! I never know what to say anymore because I am afraid of getting the roll the eyes treatment too. I pretty much don’t tell unless I think it is life threatening which nothing has been of late. In fact I never said a word for about five days last month about the pain in my side. I came downstairs dressed and prepared to head to the ER by myself. My hubby asked what I was doing and I told him where I was going and why. He said why didn’t I say something sooner. I just stood there and stared at him. I think he got the message. (I know he got it!)…and I got diagnosed with shingles!

I tripped last week 3X’s and twisted the same ankle three times. It is causing me a bit of discomfort but I haven’t said a word or told him. I think he is just as afraid as I am some days that this is all coming back. It is easier for him to ignore it than to deal with it. That’s why I come here. No one gets it, but you all do.

Have that cry and then move forward today. Come here and talk and vent. PM me anytime!

I am pretty sensitive to medicines with often the “not usual, but seen” side effects. When I started Cymbalta, I started for a week at 30 mg a day and then went up to 60 mg. This is what is recommended for “geriatric” patients, but my doctor assumed it would work better for me because of sensitivity. You may be scared enough about the chest pain to not want to ever try it again, but if you felt you could, if might help you to do this with the Cymbalta. It is also a suggestions for Lyrica or neurontin. Starting slowly may delay a little the time to most effectiveness of the medicine, but most of these drugs had something that annoys people until your body gets used to it and so going slowly may help something to be successful in the long run.
Anyway, I would try it if I were you with the next medicine.
WithHope

Hey FOM ..this gives us something in common! I never thought of the water and alcohol for a pliable icebag. What a good idea. I too am trying to go without the prescription meds. I tried Gabapentin but it made me feel so light headed and almost drunk. I was fuzzy brained and couldn’t concentrate so it made it hard to work. Add on that I began retaining fluid in my hands and feet and gained a wack of weight I didn’t want or need:eek: ! So, I never heard of the Hypericum. If it works let me know and I will try it for my feet.

Rest up and the next time you look in the mirror…give yourself a huge big smile and tell yourself something wonderful about yourself. A psychologist told me to try this when I am depressed or feeling down. If you do it faithfully, it works. The smile and the positive affirmation cause the brain to feel safe, release some seratonin and Voila! You feel better. Some days I do it every morning!

[QUOTE=jan’83] So, I never heard of the Hypericum. If it works let me know and I will try it for my feet. [/QUOTE]
Janet, Hypericum perforatum is commonly known as St. John’s wort, a mild antidepressant. It has pretty yellow flowers with many holes through the leaves, hence the name “perforatum” If you press it between your fingers it turns red, hence the name “St. John” referring to his blood. There are scientific studies showing its effectiveness. One side effect is an increase in susceptibility to sun. So if you are taking it and working outdoors you need to be careful. My references are from a German medical school textbook.

By the way, one of my earlier hobbies was herbal medicine. I used to grow more than 40 different herbs in our garden in Minnesota.

Take care

Hi Janet and FOM,
Sorry you guys are having a bad time. My husband and older son give Kevin the rolling eyes look. Especially when we were in CA and he could not take the 119 degree heat after 9 hours. Glad you guys have here and I hope I never give Kevie the rolling eyes look. He trusts me and tells me every little zap that happens, we have an agreement about doing that. I hope God helps me to never loose my patients and roll my eyes. I would hate to betray that trust and have him feel sad.

About the other medicines, what about that zylamed or something that tim mentioned. Today they just mentioned on the nightly news about sitting in the sun and taking extra D, they even mentioned ms, diabetes specifically. If they knew about cidp/gbs, I bet they would have mentioned it too.
I was wondering, is the anxiety all of the time? My doc gave me xanax when Kevie was first dx and I did not use it because I wanted to be sharp. Well, now when I get in a situation and it gives me anxiety, I go for that xanax. I use it as needed. Who knows, maybe it is just in my mind, or it works?! Hope you guys feel better.
Dawn Kevies mom

FOM,
When they first started me on lyrica it was once a day and after a few months increased it to 2xday. Two weeks later I had a major reaction to the Lyrcia and my other meds. a resp. arrest while at my family reunion, boy do I know how to end a family reunion, lol!!!!:D they put it back to once a day and other than weight gain, (which sucks) I am tolerating it well and it does really help with the neuropathy pain.

So maybe like the responses earlier said maybe you should give it another chance or try the Lyrcia.

Boy can I relate to hubby getting tired of hearing complaints. He doesn’t really say anything, but his non-verbal says it all sometimes! You can vent to me anytime onPM and I’m here for ya girl!:)

Good Luck,
Cathy:)

Hi Guys: It hurts me to think of you not being able to tell your loved ones about your struggles. I am blessed that my wife is immensly supportive and understanding, and even she gets tired sometimes and needs a break. I try not to be hurt when she need to go be alone or take a vacation without me so she doesn’t have to take care of my needs, but it always hurts some. As a therapist, though, I have to say that not communicating about such important things as these hurts relationships. It is important to keep trying to communicate with those you really love. Sometimes it helps just to have one session of marriage counselling, or to make one day a week a day you will discuss your pain and problems. Hard as it is it is important to keep working towards understanding on both the caregiver and patient’s parts. I have both sides in therapy and know how hard it can be but hard work can pay off. If you can find a way not to feel isolated and alone with residuals it makes a big difference. Jeff

I could not take the Cymbalta either! Gave me the panic attacks, upset stomach, chest pain and the drug scared the living heck out of me. Lyrica makes my head feel funny but does not relieve the nerve pain at all. And Gabapentin the generic for Neurontin, I can’t take either. Something different for I took the name brand and did okay but had the weight gain too. Effexor is another one that does not like me! It causes more numbness and tingling. And that drives me nuts. I am going through a medication problem too right now trying to get on the right regimin.

Jeff,

I hear you but there has to be a desire on the part of the spouse to get to a place of understanding. For me, I believe the difficulty comes from history. I was sent home “healed” for the most part and told that I would be fine in a year or so, to go one with my life and forget about it. The reality is I have never forgotten because I have always had some degree of residuals. What I did not know was that they were residuals (other than the tingling in my hands and feet). No one ever talked to me or my husband about the possibility of that.

I was raising a family and just went about my life. Looking back, there were so many things that I now know were residuals but were seen as something else by the doctors. I have been treated for arthritis in my feet for years, but this Nov. when I saw the neuro and he asked me to describe the pain, he immediately said that it was a neuropathic pain and not arthritis. I had orthotics made this year and the specialist immediately said the same thing…not arthritis. This is just one thing. There have been many. I can see why my family thinks the way they do. We are/were uneducated about the long term prognosis of this illness.

To educate now, means that there has to be a return to the illness. My husbands comment about two weeks ago was that I had no idea how hard it was on him and the kids when I was sick. I do know. I had four kids and one was only a year old. How could a mother not know? But also know I wasn’t here, I was in hospital two hours away. So I think the trauma of the event has affected him in many ways and he won’t talk about it. I think he fears the future as it relates to GBS. I have to find a way to gently ease him into this nightmare. It will come, but in the meantime, it is a lonely road some daysI am so thankful that I can come here.

For the most part, I feel safe here and can vent my frustrations with what I am experiencing and know there will be people who understand. We need to be kind to our spouses. For people like myself, Ali, boomerbabe, Chrissy, we had thought GBS was in the past and now it has reared it’s ugly head. Our spouses had also left GBS in the past. Because they see us on the outside unchanged, it must be hard for them to fathom what is going on on the inside for us. I have not given up. I have a loving family and spouse. As he feels safe, he will get it, I am sure.

Thanks for the kind words Jeff. Be thankful for that loving and supportive wife! I am not giving up…..

Hi Marina,

It is hard to say whether it is GBS/CIDP or not, if your numbness and tingling gets any worse or progresses I would defintely go to the ER. I know that your medical system is different there but I would hope that a Neuro could get you in sooner, you would need a bone marrow test/lumbar puncture to check for elevated proteins. Not to worry you but if it is GBS or a related illness, then the sooner the better. Best of luck to you and I hope you get things figured out soon. Take care of yourself.

Jerimy

Hi Marina,

I think you’ll find this site very helpful. I have. First off, call about your bloodwork. Don’t wait for them to contact you (or until you see the doctor again). Your tingling and numbness could mean a lot of things. I’m not a doctor, but I think that tingling could even signal something with your heart. My advice is to demand every test you feel is necessary. I speak from personal experience, as a CAT scan to show a hernia revealed a tumor in my kideney; that test literally saved my life.

Should you have CIDP or GBS, there are a lot of friends on this board who will help you through it. Also, I don’t know much (if anything) about the health insurance system in Canada; however, you might be able to get a referral to a doctor/neurologist in the States. How far are you from Buffalo? The Dent Neurologic Institute is pretty good, and there is a doctor there who specialized in neuropathy.

If you start experiencing difficulty walking, or muscle weakness, time to go to the ER. Also, many other neurologic issues can cause numbness/tingling, like MS. Not to scare you, but rule of thumb: if you get worse, go to ER. Your health is precious, dont feel like you are inconveniencing your doc. What bloodwork did they do? That would be helpful.

The bloodwork seems pretty routine. Now a B12 deficiency can also cause the tingling. Your stomach makes an enzyme that allows us to absorb B12, if you are not making it or enough of it, you can get deficiency. (I was a nursing student pre-GBS, just for record.) Unfortunatly GBS took all my money, and now I wont finish, but at least maybe I can use some medical knowledge for explanations here 🙂 ) . Anyway, none of those blood tests would say, hey, she has GBS. In fact there is no blood test for that. However, there are some markers that may hint whats going on. Many GBS sufferers have ANA (anti nucleic antibodies) in the bloodstream. Also may have an elevated C reactive protein level, still just a hint though, as CRP just means there is inflammation somewhere in body. I hope I helped. God bless you, and remember, if you have any ? or if you feel something is getting worse, get medical attention.

Also just to add, diabetes can cause tingling that is why they checked your sugar as well. 🙂

Cara,

I hope you won’t give up on nursing school. It might take you awhile to get back to it, or to be able to afford it, but better late than never.

The profession could use another caring, compasionate person like you. Keep the dream alive!

Thanks for the support, suzanne and mryder. You are right, maybe one day when the fatigue fog lifts, and money has turned around, I will go back. 😉 I was a junior, 3 years down, 2 to go. Let us know how your appointment went.