Glad you’re back and on your way to recovery.
Yes, there are a LOT of new members here.
Be well-take care.
By the way, on a whim of my neuro, he wanted to take a stab,
at using “speed” to fight the great fatigue I was having, where
I was almost spending most of my day in bed.
After some trials with milder stimulants that didn’t work,
I hit something that DID work.
I now take Ritalin 20mg when I first get up in the morning,
then another 20mg around 10-11am, to get me through the
afternoon. AND IT IS WORKING. Some days it catches up with
me, and I spend one day in bed. But it is better than spending
every day mostly in bed.
sounds like i’m not only one who’s having these prob’s. some times I feel alone cause of pain and then weakness and having to take pain med’s 4 to 5 time’s a day. these are big pill’s to 10/325 percets and they don’t work any more but nothing else they can do. An yes after time your body get’s funny acting from being in chronic pain. I just pray I wake one morning and i’m back and can run an have fun with kids again ride bike and all this would be nice but even if it’s not in cards I LOVE JESUS ANY WAY HE HASN’T LEFT ME SO HE HELPS MORE THAN ANYTHING .HE KEEPS ME SAIN . IF THATS POSS WITH ALL THIS PAIN AN DRUGS. IT’S BEEN ALMOST 4YRS ON AUG 16 TO BE TOTALLY ON DATE. BUT WHAT I’M GRATFUL FOR IS BEING ABLE TO VENT AND PEOPLE UNDERSTAND WHAT I’M SAYING AND VENTING FOR YOU GUYS ARE GREAT CAUSE YOU UNDERSTAND GOD BLESS YOU ALL.:D
I have had gbs since aug 05 and they couldn’t give me nerot or any other due to it made me sick . Don’t worrie if I hit wrong key having trouble doing things this morn.But I agree with fact after yrs of cronic pain body mal function junction. BUT I HATE TAKING PAIN KILLER’S I AM SO SICK OF HAVING TO TAKE FOUR TO 5 10S A DAY JUST TO MOVE AN FUNTION WITH KID’S OPP’S HIT CAPS. Sorry but I feel were your coming from. But my doc says 10s perc’s is only this she can give for pain. I ask for some thing less harmful but ind doc’s have prob’s I guess with giveing pain killer’s hope they don’t take them away cause i’ll be sick from pain. So jeff thank’s for info now I know why my bodys been acting this way.:eek: och
I just saw my Rhuemy today and they took 8 tubes of blood out of me! LOL! Ouchie! Well anyway I asked for a copy of the labs he requested and here is what they tested me for. IGM, IGG, IGA, C-Reactive protein, FOL, ESR, Creatinine Clearance Panel, CMPMP,CK, CH50, CBCA, C-4, C3,ANART, DHEA, Vitamin D, Anti-DSNA, ENA
I see they did the IGG again on me too like they did last year and back in December! Some of the test I know what they mean while others I have to try and look them up. All day at that doctor’s office but I think I am going to like him.
Good luck with your testing!
Hi Jeff! A little confused on this test. I tested positive last summer with IgA Antibody or IgG. Something like that with Immunoglobulins. Would have to pull out my medical records but did test a low positive. What ever that meant! Then in December they tested me again for IGG. So I am not sure if both test are related or not. Might be the same test or might be different ones looking for two different things.
I hope the test turns out okay but I am like you! When I have a problem, I want to know what and why it’s going on. I don’t like being in the dark and not knowing what the heck is going on! Really scary stuff! Keep us posted on your test results and I wish you my best! Hugs
I totally agree with you about choosing to not live in pain. I am like Tim. Every evening at the same time my burning starts in my hands and feet. In fact both arms burn too. And then I lay there in bed fighting myself trying to get some decent d.. sleep! LOL! So now I take tylenol with codiene. Some nights I can handle it while other nights I can’t. It does end up getting you exhausted because you can’t rest in peace with it. I am glad your doctor’s decided to give you something to help and hope this will work for many years. Good luck Jeff! Hugs
I am so sorry to hear of you having more pain. I know for sure that it does reck havic on the whole body…a really big shock to all the body. I mean from the head to the toes. I improved somewhat up to about 10 years, and then it started getting worse really quick again. I do think age has something to do with it too Jeff; as we age the body naturally gets slower and weaker, without any illness contributing to the process. Jeff, what is the difference between residuals and peripherial neuropathy and when does it go from being a residual to neuropathy ? I would really like a answer to this Jeff; as I have thought about it quite alot. I am not trying to hijack your thread Jeff, but if I don’t get a answer here I will then post a thread. My best to you my good friend.
Hi Jeff! I was in the hospital when you posted and the week before had the flu and then a funeral right after the flu! So the past two week have been really hectic for me. Now my son is home and I won’t be posting much until he leaves which is another two weeks.
So sorry you have gone through this. Me having Lupus there is that chance of getting what you have. So far I have been lucky and not had that yet and hope not too!
I know of someone that had that and they hurt too because of it. Not fun having for I remember how sick they got. They landed in the hospital for theirs and stayed in the hospital for quite some time.
Don’t overpush yourself and try to get as much rest as you can. Hope you feel better soon!
Boy do I hate those sick spells. Alot of diseases can cause that nausea and dizzy spells. I have Lupus, Thyroid and CIDP. With the Lupus, I ended up getting a Vestibular problem many years ago and that made me sick as a dog. Never threw up but felt like I was going to and driving or going places was just about impossible. I had a nerve inflammation right behind my ear. Considered a CNS problem that required Steroids. I got better but they too had to put me on Meclizine..mispelled for dizziness! Got better and then the thyroid messed up and the same spell hit me. Then too when my lupus flares up, I also get those same spells. A weird sick feeling and the only thing I can do when I get that way is lay down and rest hoping to get over the nasty spell. Not fun having, I know but once they get you on a right diagnoses and can do treatment those spells will normally ease up some. You still may get them, but the severity might not be as bad.
Good luck getting that diagnoses and I hope it’s a quick diagnoses with a good treatment option. Keep us posted! Alot of very helpful folks in here that give great advice!
Hi Jeff! So glad you came out of the woodwork and decided to joing us after reading a while in here! 😀 I too did the same thing. I think I read about two or 3 weeks and was getting ready to post and then I would chicken out! I would like to Welcome you to the site! We have a really good family in here with all caring and sharing people.
I too have CIDP and am going to Duke to be ruled out on a few things before they decide treatment on that. Hoping I won’t need treatment and they found my problem.
So glad the information in here helped you to find a path of getting diagnosed and I hope your first treatment begins a new life for you that you can enjoy forvever.
Yes! My husband has said the same thing too! Hurts my feelings when he say’s it but he really does not mean to say it. He’s just fed up with all the doctors that I have had to go to not getting any answers. One doctor just recently saved my life and to him I am grateful! But I have seen a few that had no care in the world. But we do have some good doctors! They are hard to find though. When you find a good one, you don’t let go!
Glad to meet you in here and I hope we see more of you posting. Let us know how you do! Hugs
Hi Jeff! Hope you are feeling a little better today and wishing you well and glad to see that you are going to stay with the family here. 😉 We all get our days of feeling blue and I certainly understand how that feels. To be on the safe side, I would check with your doctor and tell them about the fevers. It might be infection but then again it might just be something that you have with your GBS. But let them keep checking as to why. I know with Systemic Lupus it’s very typical of that disease to run low grade fevers. Certain medications too at times can cause low grade fevers but normally it’s because the medication has suppressed the immune system to low and now it’s easy for the body to pick up infection.
Something else we have to think about.. which never crossed my mind many years back as getting diagnosed with Lupus. For some reason with me being so young at the diagnoses of Lupus. I alway’s thought that I got a disease and that would be the disease that takes me from this Earth. Not thinking that I would get other diseases right behind it!
Just because you have GBS. Don’t blame all your symptoms on just one disease. Especially if you notice something new or out of the ordinary. I went for almost a year telling my doctor’s that my lupus was giving me a fit and had a weird attack a few years ago and they found a B-12 problem. A Pernious Anemia. Never even thinking it could be something else. I had Lupus and blamed it on the Lupus. Funny thing to, for my Lupus alway’s had spells where my labs would at times be normal and other times not. And that year my labs stayed normal. I was insistant with my doctors it was Lupus. Turned out to be something else!
I say to myself then “Oh Great” what else am I going to get as I get older. I started out with 1 disease and now have several added to the list. Never had asthma and now I have asthma. Never had high cholesterol and now I have that too. Never had arthritis and now I have that! Never had Osteosporsis and that got added on! The list started to grow and then CIDP came along. Now my thyroid.
Here I am in my late 40’s and feel like a 98 year old woman telling you about her ailments!
One lesson I learned but for me I am a little late learning it. Everything got blamed on Lupus. And yet, there were other problems and they were not even Lupus causing it.
So anything new that seems to be different, let those doctor’s know! Feel better soon! Hugs
Please don’t leave! You belong here with the family here! Hey! Your my family here and I need you around just like many others that will be coming along. Believe me! You will be missed deeply! Especially by me and I am pretty sure others too! Plus you have questions too that have been unanswered and need support too!
I too run the morning and night fevers. Low grade fevers. Alot of people with auto-immune disorders have that going on with them. Mine was caused by Lupus. But I’m just wondering if CIDP can cause them too for I have seen the fevers even with CIDP. But Lupus was not being active in my labs.
In order for me to keep my fevers in control I have to take Ibuprophen 3 times a day 800mgs. That helps but please talk to the doctor first before taking. Because of certain meds you are on it might not be the right medication for you. But it’s worth a try talking to your doctor and see if they can RX something to help with the fevers.
But please don’t leave! You are wanted here and cared for in here! Hope you feel better soon! Hugs coming your way!