Something is wrong
AnonymousNovember 29, 2008 at 5:20 pm
Hello everyone. I hope you all had a great holiday.
I wanted to share what just happened to me the last two nights to see if anyone has had this happen and what you think.
Thanksgiving was great and I did alot of cooking. My husband was a gem and a tremendous help. I went to bed late that night…actually got three hours of sleep. I woke up once with my right hand very very numb…like a rubberband had been around it. I tried to shake it out and it wouldnt and it burned. I was able to go back to sleep and when I woke up I was fine. Keep in mind, total hours slept were three.
Yesterday I was up at 4a and my niece and I shopped all day until 230p. I came home to watch our NE football team beat Colorado. While watching the game, I was wrapping the stuff I’d bought so I wasnt really “resting”. After the game, I went back out to the shops and shopped until midnite! I could barely walk anymore.
I came home and showered, went to bed at 1a. EXHAUSTED !
I woke up somewhere around 3am with my hand again completely numb and burning like it was on fire. I couldnt shake it out, rub it out, nothing- and the more time that passed, the more it burned. I got up and ran cold water over it and about ten minutes later, the burning stopped, it was still numb and I went back to bed.
I woke up again at around 5a with it burning again, this time worse than ever.
I have never felt that kind of pain in my life. It was completely numb…all fingers and thumb. The burning was unreal. I held it under the cold water again and I was crying b/c I couldnt take the pain. Hubby woke up and tried to help me and ended up getting me an ice bag so that I could at least lay down. Somehow I fell back to sleep until 1130 this morning. My hand was no longer burning but still completely numb until about 2pm this afternoon.
Now, as I type this, it’s 4:15p, my hand is not numb like it was but will go number slightly in the fingers and then come back. I dont know what is going on !
I called my neuro’s office only to get a call back from a partner and he told me to go to the ER. I didnt b/c I know that there will be nobody at an ER that knows what CIDP is.
I’m fine…a little pain in my wrist and arm…slight numbing and no burning.
I cant take that pain again. I pray it doesnt ever come back.
We’re going to go to two stores and come home and vedge, maybe wrap a few things and do little to nothing for the rest of the night.
What is going on ?
AnonymousNovember 29, 2008 at 8:30 pm
I’m not sure medically what is happening–probably a bit of a flare up. BUT me thinks you are overdoing it. I think you have to take more rests and not go shopping etc. for such lengthy periods of time. And then you wrap presents in your down time. That is not really down time. I have to be on my husband all the time over this kind of thing. He will buzz around like mad and then crash all of a sudden. Pace yourself i.e. shop for an hour and have a 10 minute rest. Rest is important. Hubby is new to CIDP and it is hard for him to adjust to this. I have had MS for 20 yrs. so I know absolutely the value of pacing oneself and resting. I have caused exacerbations with my MS by not pacing and it does make all the difference to quality of life if you do pace yourself.
November 29, 2008 at 10:37 pm
Woman!!!!!!! You take shop till you drop to a whole new level!!!! Just a thought, is it possible it is a pinched nerve form all of the packages or a heavy purse? I have that happen a couple times a year myself. Not sure if it is what you describe, but it sounds similar. I do the same thing, ice pacs, but I add some vicodin and darvocet, It usually last a couple of days. I notice it seems to eiter coincide with overuse of the leaf sucker upper, my heavy purse if it is a long shopping day or when the weed wacker is stubborn and I have to keep pulling at it to start it. For a while I got rid of my ginormous purse, (you felt how heavy it was) it seemed to help. I hope it is something as simple as that! On the brighter side, you should be at least half way done with your shopping!!! How did the doc appointment go? Did he agree to increase?
DAwn Kevies mom
AnonymousNovember 30, 2008 at 1:40 am
I, like others, think your body is protesting that you are trying to do too much at one time and need to pace yourself. Think about what you do with your right hand when shopping and try to not do that. Try not to carry packages or a purse that presses on your arm or shoulder. I went shopping briefly last weekend and my arms were terribly sore and all I could think of was that I was carrying packages not only in my hands but also over my arm–these were not heavy, but it was still pressure. I think nerves with this stuff are really, really sensitive to pressure on them–such as carrying a bag on your arm. Please rest and let all this settle down. It will be far better in the long run.
WithHope for a cure of these diseases
AnonymousNovember 30, 2008 at 9:13 am
Hi Stacey! Hmm! That is what happened to me after I had my spine surgery. My whole body burned like fire. And the fatique was terrible. Sounds like your CIDP is acting up and I would call your Neuro on Monday and see about getting seen.
Know that hands in a frying pan feeling. It does hurt! Lost many nights of sleep in the summer dealing with it! Strange huh? Here we both had back problems and then get CIDP!
The past couple of days for me my left leg is now having that rubber band feeling and the knee keeps buckling out on me. I think my surgery on my spine actually ended up being a failure because of this attack on my nervous system. But won’t have surgery again on my spine. No way! Hope you feel better soon! Hugs
AnonymousNovember 30, 2008 at 3:15 pm
Are you sleeping on your arm? That happens to me when I am so exhausted I literally pass out in whatever position I fall in. Sometimes that happens when I pass out on my side with my arm under me and the nerve gets compressed. It hurts like mad for awhile until the nerve recovers and I go back to sleep, then I turn over, lie on it again and repeat the process. Also if you sleep with your arms bent the nerve can get compressed too. Just something to think about if you lie on your side or stomach. Of course there is ALSO the fact that you are doing way too much. 😉
AnonymousNovember 30, 2008 at 5:50 pm
I think almost all of us has to yell at you and say “YOU’RE DOING TOO MUCH, GET SOME REST”. Try taking a few days off and do some R&R and see how you feel. If those things go away, BINGO!!!
I’ve never had a burning sensation, but I can get what I call “normal numb (falling asleep with my arm tucked under me) over syndrome numb” and I have to wait for it to return to just “syndrome numb”.
AnonymousNovember 30, 2008 at 6:11 pm
It Sounds like you had a good time on your holiday and tore up the stores shopping.
With your hand, it does sound odd to come and go in that manner. I am on the same line as Dawn. I noticed when we hung out in Chi town you do use a cane. Can’t remember if you use your Rt side, But, you may have overdid it on your wrist with all that fun you had. Remember, our nerves are damaged so when we go extreme, symptoms pop.
I get weirt numbness and broken blood vessel/nerve pinches in the fingers if I carry something thin or wired like a shopping bag that is heavy. anyway you know what you actually experiencied, As always, use your judgement and get to the doctor if it persists. Hope it goes away!-Tim-
AnonymousDecember 1, 2008 at 7:59 am
Oh, yes, I over did it. Yes, I went to the extreme. And ya know…the bargains werent that great ! I’m just the type of person that when there is something to be done, I’ve got to get it done no matter what.
And shopping was the thing that day.
I dont carry a heavy purse. It’s not that.
I havent had another episode quite as severe but the next night, it did happen again. I had an ice bag right there and ready and it didnt take as long to tone down. Now I am left with a stiffness with some pain in my wrist and off and on worsened numbness. That burning is nothing I can explain. Someone said frying pan hands or something…yes, that’s a good way but let me add it also feels like your hand is dipped in hot grease inside the frying pan.
I havent caught up on my sleep yet but did rest some and didnt push myself as hard. I KNOW I have to slow down….why dont I do it ! Too much to be done I guess.
I’m calling the nuero today regardless. The aggressive doc.
At least I am better…worse than a week ago but a heck of a lot better than Friday night !
well wishes everyone,
AnonymousDecember 2, 2008 at 12:41 am
Hi Stacey! That was me with the frying pan pain! LOL! I burned so bad that I was jumping in a bath tub with cold water. Nothing I took helped it! I am just starting to come out of the attack but I know that exact pain! Very hard to describe but what you said is the same feeling. A totally horrible experience.
Get your neuro to check your vitamin D levels.
This is strange, but 6 weeks ago I started taking an RX of Vitamin D 5000IU’s a week. My levels are still low but within normal limits now. And I have been taking One a Day Multivitamins for women. I am starting to feel so much better. My energy levels are getting better.
Only one setback this past week was my Rituxan treatment. Yuk yuk! LOL! I had to double up on Neurontin and still need more but am tolerating the dose I am on. Taking Ambien also at bedtime.
You sound like me! When go into town I get my business done and over with in one day! LOL! Then I am bedridden for about a week from overpushing!
That burning pain is so painful that it’s hard to describe.
Tomorrow I had to go into the hospital again for a second treatment. I thought I was only getting one a month and found out today that I go in for second dose. 4 week of that nasty Rituxan and then every month or 6 weeks. Hope you feel better soon!
Really though! Try those vitamins. They are helping me alot. Got more energy!
AnonymousDecember 2, 2008 at 6:08 pm
Of course we’re all gonna say you overdid it but I would also like to say “you go girl”..Just keep this in mind, don’t ever carry anything as heavy as dawn’s purse for any length of time because your butt will be dragging for a month 😀 . Maybe if you keep that in mind it will kind of help when you are shopping.
Hopefully the doc can answer your questions and allow you to get all of your holiday preparations done. I havn’t even had the energy to put up my tree or any decorations. HUMBUG..I want to just not quite able to yet
AnonymousDecember 3, 2008 at 8:40 am
They have increased my ivig to 60g and I’ll get it Friday and go every four weeks with it. Cant get in to the doc until Jan 5 unless someone cancels. They said it could be carpel tunnel or active CIDP and no way to tell until I’m examined and or do an EMG. So, we’ll see.
There’s no way I could carry a purse as heavy as Dawns. I’d have to sit and rest every few steps ! Yikes. We never did find out what she’s carrying in that thing !
I’ve paid all week for my big day last Friday. I’ll never learn.
good day everyone !
December 3, 2008 at 9:07 am
I told you, it is my hooker bag!!! About the carpal tunel, try doing a search on here, several members were dx w/ carpal tunnel AND had the surgery only to find out they were misdx. About the 60g, is this the aggressive doc or the other one? Either way, based on your symptoms, now using a cane, I would say 60 is not even touching it unless it were 6og a week. Kevin is getting 80g a month down from 105 and he weighs 127. He did the loads, 105 for a year, every month now we have started tapering. I don’t understand his logic. Is it possible you just figure out the load dose based on you weight and go there on the next appointment and just flat out say, “Look, this is a loading dose, this is what I want. I have gotten worse over the year and want to try it my way” Stacy, you have nothing to loose and everything to gain. It may take a few months of loads to stabalize you and let healing begin. You have to start somewhere. I know you are aprehensive about reactions to ivig, but maybe you could try a load amount divided over a month, once every week. Woman, I want to come and shake you, hit your doc over the head with my giant purse and get you both to do IVIG!!!! Bring Penney with you for moral support and backbone, somehow I don’t see her clamming up to the doc if given the chance. Be strong!!! Regarding your comment about overdoing it and paying for it. If you had fun doing the shopping extravaganza and you accept that you will have to pay for it later, I think you should do what you want. I see Kevin so very happy when he does fun stuff. He says it is worth every moment of pain when it is something fun that he paid for. I think it helps to keep him happy and as normal as possible. There has to be some fun and it sounds like you did have fun shopping!!! I am going to say some prayers for you tonight asking God to help you find a balance and an ivig schedule that works and will get you going again!!
Dawn Kevies mom
AnonymousDecember 3, 2008 at 11:41 am
i talked to the aggressive doc yesterday and he’s the one that said no way to tell until examined. I do have an appt with him and plan to keep it…next Tues. In the meantime, the not aggressive doc’s office had called (b/c I called the emergency number over the weekend when my hand got so bad) and I told them I wanted 80g and they settled at 60. My infusion was already set for Friday so I’m keeping it. Otherwise, I skip it and wait at least till next week when the aggressive doc orders it ?
I figured this way, I’d get the ivig…even tho only 60 (bettter than the 20 she started me at) and then go see Dr Aggressive next week and tell him what’s going on. I am SURE he will order the loading doses b/c that’s how he is. Unless, ya think I shouldnt bother with the 60 on Friday ? I figured it wouldnt hurt.
Dr aggressive is male…the other is female.
Not to worry my friend…I AM going forward with my plan. I was just worried about what the first dr would say b/c I went for the 2nd dr. I didnt mention it to him when I talked to him yesterday. There were people around at work and I didnt wanna get in to it all. I’ll tell him Tuesday…and Penny IS going with. He has me scheduled long just in case he wants to do the EMG right then.
He’ll probably ask why I didnt tell him and at the time I talked to him, I really didnt know if the other office was gonna order the IVIG. She wanted to do cellcept and imuran next.
Do you think the first doc will be ticked ? I plan to tell him that my family insisted I went for a second opinion…so I did and she’s not what I want and so I am back.
As for pushing myself…I have to. I just have to. I have a life to live and I wont let CIDP stop me. It may slow me down and even LAY me down a day after but…life is passing by too fast already.
AnonymousDecember 3, 2008 at 10:27 pm
Hi Stacey! Ohh boy! You sound like me many years ago when I first got diagnosed with Lupus and was just starting to get better. My favorite saying ” I don’t have time to be sick” I got too much to do! Or! My life is going by fast and I have so much I want to do!”
Stacey! I think we all have said those words.
Everytime I would say those words and started fighting back, the lupus would kick in and would tell me different causing me to get let down each and every time.
I eventually excepted my disease and learned it’s limits. Knowing what I could do and what I couldn’t do. I have had nerve damage for 16 years. And in those 16 years. When I would get an attack as much as I would try to fight it. It would make me worse.
Whatever you do! Please don’t over push yourself when you are flaring. That is a sign when your body is telling you to slow down and rest. Pushing yourself will only make it worse instead of better.
My life too is going by fast and I have missed alot of things I wanted so badly to do. I pushed hard alot many times and wanted to be able to say I achieved something in life.
Today with the way I have been being sick with alot of things. I have come to one conclusion. My life is too precious and everyday I get the chance to wake up is another lucky day for me. I don’t over push myself anymore. I take it one day at a time one week at a time.
There is still so much I want to do. But if it don’t get done, it just won’t get done. I honestly believe me over pushing and trying so hard is the main reason I am in the way I am in today. Life is too short! Enjoy what you can and don’t overpush!
Your life is more valuble than overpushing and trying to achieve. When your body tells you no! You listen to that and take it easy! Even if it means 2 months, 1 year or 2 years. You take care of you!
I hope you start feeling better soon. I still have the burning pain since May 2008. It is finally starting to ease up. But I have been unable to work for a while now. I miss work and we need the extra money. But I have faced it and do now for my husband at home and try but my body has told me no. When my body says okay! Then I do what I can but I will never over push myself unless I have no choice. Get well soon Stacey!
I wished I could find many more of us that had epidurals and see what damage it did to them. I think many of us got the CIDP from it! So weird how a few of us in here all got CIDP and we all had the epidurals.
AnonymousDecember 4, 2008 at 10:29 am
I had another episode this morning. It wasnt as severe with the burning but it did still burn like you know what. I got in the shower b/c it started just before I had to get up. I held it under the cold water first and this time that didnt help. So, I got in the shower and tried using at I normally do…washing my hair and stuff. It eventually stopped burning but the numbness lingered.
Now it just kind of hurts. The severe tingly numb has passed, too.
I cant live with the burning.
sure wish it wouldnt come back.
AnonymousDecember 4, 2008 at 3:22 pm
Listen, I have this theory of my own. I think that those of us with CIDP are more likely to get carpal tunnel because when we try to use our muscles that are not getting the impulses from the nerves that inervate them, we call in other muscles and supportive mechanisms like the tendons and ligaments. When these mechanics get overloaded that is how you get tendonitis. In fact, that is how I was first diagnosed. I was overuseing my hands and arms doing Massage Therapy so I got a severe case of CT. I was sent for an EMG and that is when CIDP was found. I think the link is the weakness the CIDP causes. Anyway, I hope you get treatment. I highly discourage surgery for ct. It only makes everything worse. I’m so glad to see you investing in your health and taking such good care of yourself. Keep us posted.
AnonymousDecember 4, 2008 at 6:13 pm
Stacey you aren’t alone and thanks for this post. Last night was my third day of IVIG and with the migraines I had slept 4 hours in the past 2 days. So last night I wake up 30 minutes after falling asleep with numbness and tingling in my legs, hands and mouth. Scared the crap out of me. The last time my mouth was affected was when I first was sick almost 20 years ago. I generally just disregard the light neuralgia. This was bad. Reading this post helped alot. I was searching for whether or not IVIG had caused anyone to have a relapse and found your thread. Its hard to not run through the “what if my diagphram stops in my sleep” scenarios in situations like that. I saw my neuro today and they cut short my IVIG and he’s switching me to that arthritis drug kinda like immuran but it starts with an M (Sorry still operating off of 2 hours sleep here.) **edit** its methotrexate**
Have you tried lyrica or neurontin for that burning? Be careful with the ice or cold treatments, remember its not really burning. I hope this passes soon.
AnonymousDecember 5, 2008 at 9:10 am
Hey Stacey! When you see your doctor. Ask him for a Vitamin D lab. That too can cause severe burning. In fact the FDA announced that Vitamin D is not in enough foods and many people are not getting the sunlight they used to get causing Vitamin D Anemia. Since they started me on Vitamin D I have noticed less burning in my arms. It’s worth a try. Hope they get you well soon! Ohh! Have them check your thyroid too! That kind of burning too can be caused by thyroid. Hugs
AnonymousDecember 5, 2008 at 9:38 am
I was up from 3 to 430 this am with another real bad episode. Burning…I cant take that burning. I am very lucky that it doesnt last…it’s not burning now. It hurts now…into my wrist…fingers a bit numb.
What IF it IS carpel tunnel ????? Then I’m really screwed. I’m having ivig today and hope that something gives soon. I know, it’s not a large enough dose…but, it’s something.
I can NOT deal with that burning. It is truly a pain like no other.
Grawplyr, glad to see you posting again. I dont know that IVIG can cause a relapse or if anyone here has had that happen. I hope you do better with your new meds. I had the meningitis headache on my very first loading dose long ago. that’s no fun !
I fake bake…I wonder if that is vitamin D.
All I know friends is that I can not take that pain…I know I keep saying that, but it is truly horrible. I pray that it stops. I’m grateful it doesnt last all the time or I dont know how I’d make it through the day. It literally feels like my hand is on fire. A really hot fire. And, duh…the cold water doesnt help b/c it’s not really a burn…like grawplyr said. I never thought of that. I rub it and shake it, put it under the water…the only thing that really probably helps is time. I pray that nobody else has to deal with this.
I have ivig at 330 today.
bye for now
AnonymousDecember 7, 2008 at 3:05 am
Im sorry youre still having issues. Have you tried neuralgia drugs like Lyrica or Neurontin/Gabapentin? I think you should really call your doc asap and request that. You’ll know right away if it stops it that its neuralgia and not carpal tunnel.
yea that meningitis has me scared. Yesterday I had the migraines and neck aches. Its horrible.
Im so tired from the ivig and migraines and stress its stupid. I hope it passes in a few days and I can get back to PT.
I hope IVIG works fast for you Stacey.
AnonymousDecember 7, 2008 at 4:15 am
Guess what? I woke up this morning with my hands burning. HA HA HA. No, it’s not funny – it hurts like someone is holding a lighter under my fingers. Looking at my fingers they are mottled red and white, puffy and it’s the white areas that are painful and feel like they are burning. And I’m fairly sure I didn’t sleep on my arms last night. Curious. It almost feels and looks like a vasospasm – do your fingers and hands change color when they burn like that? I mean before you submerge them in icewater… 😮 Likely we don’t have the same thing going on but waking up that way made me think of you. They are still a little painful but it’s calmed down quite a bit – I spent about an hour massaging them and doing stretching exercises to loosen things up. They are a normal color now and only hurt a little bit. Wow, how annoying to wake up like that though! I can’t believe you haven’t snapped yet!!!!
I completely understand about the headaches, I spent almost eight months with a constant IVIg headache. It wasn’t until we had to slow down the infusion rate because of my kidneys that they finally went away. Medications did not help, even adding prednisone to the mix didn’t help. Now I don’t get them anymore, or only just a mild tinge here and there if I do too much right after the infusion. It takes half of forever to get my infusions now but it’s better than wanting to scream at the sun… here is what we do that seems to work: 1.5 hours at 25mL/hr then 1.5 hours at 50mL/hour and then 5 hours at 100ml/hour. As I said it takes half of forever and I don’t know whether my insurance company will be pleased at the extra nursing costs but I don’t care. Those headaches are AWFUL!!!!!
I am also curious about your theory that the IVIg caused you to relapse – interestingly after the last two treatments I’ve had a small/short relapse, what I call the “creeping numbness” that only stopped when I took steriods for a couple of days. Logically IVIg should not cause a relapse; however I’ve been toying with this idea that maybe my body is starting to see the IVIg as a foreign substance. Whereas before I was too sick to put up any resistance to the invasion of the foreign Igs, now I am getting better and my immune system is perhaps fighting back a little. That’s probably a total crack-pot theory but I’ve been trying to figure out why that has been happening to me and that’s where I am right now in my thinking. Does that make any sense to you?
And Stacey, the remaining burning pain left my fingers as I was typing so that kind of does point to a circulation problem for me – likely because of my recent round of treatment, my blood is thicker and it’s tougher to get it to the small vessels in my fingertips. I’m taking an extra baby aspirin so hopefully that will help.
December 7, 2008 at 9:33 am
Kevin is suffering form one of the meningitis headaches this time as well, could not have any smells, light or sound in the room, could not move and puking. I was sure we had this thing beat at least by 50%, this time was awful. The only good thing was it happened at 9pm, (a full 79 hours post infusion) so I gave him the tylenol, aleve and two benadryl to knok him out so he could sleep it off. I am going to experiment next time by not giving him the pre-meds around the clock and 3 days post and just give hime the tylenol, benadryl, aleve once each of the three days and then 24hrs post try again. maybe he is getting a headache FROM the tylenol/aleve. There is a word for that type of medicinal headache, I forgot, starts with an R, maybe refered? I don’t know.
About the ivig causing a relapse, the months of Oct & Nov, 7-10 days post ivig, Kevin was tired, increased pain and tingling accompanied by zings and zaps. His stregnth was present however. I was convinced he was in a relapse, he was begging for more ivig, ten days out and he hates the infusions. We went to the neuro and he was convinced it was because of a cold or sinus issue, Kevin also had an infected toe nail which also could have added to the equation. He said people with cidp have a harder time when illness or other inflamatory process’s are present (toe) He was right, Kevin is pretty much back to normal and his ankles are better and not as tired. Don’t give up on the ivig, maybe you can add to it, especially during cold and flu season.
Julie…. look up Raynauds syndrome, sounds like your hands, although I do believe they get a tint of blue as well. I just want to come to Virginia and (I think that is where I remember you are from) give you a hug!!! We will get you through this!!
DAwn Kevies mom
AnonymousDecember 8, 2008 at 9:21 am
sorry to here.sounds like me i,ve been doing this same sleep pattern for over year and waking up numb arms but somthing ,I was wondering about to was when I go to bath room sitting I go numb in lower back and legs cant really get well you know this just started two weeks ago should i be worried??:confused:
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