November 4, 2008 at 10:56 am
Have any of you noticed any oflactory changes with CIDP or GBS? :confused:
I have recently been smelling a “hot” smell at home that reminds me of the odor of flint against steel. It comes and goes second by second and I’ve tried to track it down without success (I even thought it could be something on my clothing or skin).
Yesterday it finally dawned on me that I could smell it at the office and in my car. It seems to come with air movement (fan, AC, …).
Thinking back, I seem to smell it when my CIDP is flaring up the worst and I don’t notice it after it calms back down after I’ve had my PE treatements.
So, could it be a false smell due to nasal nerves being involved?
Has there been any discussion or info on this before???
AnonymousNovember 4, 2008 at 4:47 pm
Hi Gary, You described my smells to a tee!!:) I get those smells during my relapses. I don’t have normal senses and haven’t been able to smell correctly since all this started. During one relapse, when my eyelids were stuck closed, my neuro tested my nasal cavity-I flunked in all aspects. The strong odor, air intake sensory, and touch with cotton swabs. She took out my oxygen and put in cotton swabs that had some kind of liquid on the tips and I had no response at all to any of it-and since I couldn’t see what she was doing, it was a pretty true test that I failed.
Hope things down in Texas are getting back to normal for you. Take care.
AnonymousNovember 4, 2008 at 4:51 pm
Gary, I had GBS 25 years ago and even now I get those weird smell things. I smell things that no one else can smell. My most frequent one is the smell of air when it is really dry and dusty. It is annoying. I also sometimes think I smell sulphur (like when you have just struck a match). Never thought much about it or even attributed it to GBS. The more I read here the more I realize I have had many issues over the years that I just wrote off as weird….
AnonymousNovember 4, 2008 at 5:47 pm
Since this all started I smell what I can only describe as burning plastic. No one else can seem to smell it. I did some research awhile back and came up with the lots of info on phantom smells. I have just chalked it up to a weird aura without a migraine ( have a 25 year hx of migraines that stopped right before all this other stuff started). Now you are making we wonder…..
AnonymousNovember 4, 2008 at 6:19 pm
I’ve been aware of the weird smells from the beginning though it took me awhile to figure out it was something related to the CIDP. That hot/metallic smell comes and goes as well as something peppery-like that makes the inside of my nose tingle, sulphur smells, iron smells – interestingly they all tend to be metallic related. Just one more little fun thing.:)
AnonymousNovember 4, 2008 at 6:24 pm
I also had problems with smells but I also couldn’t taste anything for about a month or two. When it did start to come back all I could taste was extremely sweet and extremely salty. I remember the grapes in the hospital tasted like they were pure sugar. It didn’t stop me from eating though..lol
AnonymousNovember 5, 2008 at 12:22 am
I find these really interesting posts!
Is this something that happens, all the time, sometimes, or rarely…but enough to notice?
I don’t think this has ever happened to me and I just find it fascinating. Has this type of syndrome/symptom complex been documented in the literature? If so, at what rate?
AnonymousNovember 5, 2008 at 3:42 am
I should have mentioned the tastes too – nothing tastes right if I can taste it at all, by all rights I should weigh as much as a paperclip. I get the metallic tastes in my mouth too, I attributed it to poor dental hygeine but maybe I’m just being too hard on myself since some of you have it too. I also think everything tastes too sweet and too salty, I didn’t think about it until you all mentioned it, I’ve just adapted by diluting all my drinks with water and giving up sweets and potato chips. It kinda makes sense to me though if the cranial nerves are messed up they would send some ‘off’ signals wouldn’t they? I’m just now getting my sense of taste back after two years so it makes sense to me that it’s coming back in spurts.
Now what about hearing? My hearing has gotten both extraordinarily acute and … I don’t know how to describe it but it’s like I have a hard time filtering out all the different noises and paying attention to the one I want. It’s not a mental thing, it’s a noise filtering thing – plugging one ear in a crowded room can help but it’s really best not to try to talk to me in a crowded room, I won’t be able to hear you. At the same time I can hear a fox barking from two miles away if there are no other noises outside, I can hear ants walking across the gravel, and yesterday I woke up from a nap hearing a horse running around in the meadow a quarter mile away. I’ve never had THAT good of hearing before I got sick which is totally weird and contrary to me but that seems to be the nature of this disease.
AnonymousNovember 5, 2008 at 4:26 am
I too have to delute my drinks even orange juice. Orange juice to me taste like syrup. And my husband drinks it all the time. But I have to have mine like an orange aide! Ohh! I notice the metallic taste when I am flaring with lupus or the nerve damage is acting up. Alway’s seems to be when I am sick feeling. Been sick all week and have that metallic taste in my mouth. No bad breath though. Just have that smell. Taste like a copper penny! And I smell the copper penny smell!
The hearing just! I get ear popping alot and then my ear will feel like it’s clogged. When my nervous system starts to get over active meaning a flare up again, my ears will get super hypersensitive. Sometimes a normal little noise in the house that would normally not make me jump will make me jump. And then my heart will start pounding because the noise scared my system. LOL! Kind of hard explaining this one! My husband like playing music and sometimes the music is just too loud for my ears. Other days the music sounds fine.
And then I have one side of my face that always feels abnormal. Feel like nerve damage is in that area. This is weird too! One side of my nostril works fine and I can breathe great out of it. The other side feels like it is not working at all and I feel stuffy in that nostril and can’t get that one side of my sinus to work.
Great subject! And so strange that we all have these symptoms or simular ones!
AnonymousNovember 5, 2008 at 6:02 am
I always thought it was my body just compensating for some of the other “missing” senses (toes, fingers at times, decreased eyesight). I smell the baseboard the minute it kicks on, the heat from the burners on the stove, a cigarette from a passing car. I thought the metal taste was part of that also. My tinnitus has “turned up” the volume since my disease started.
AnonymousNovember 5, 2008 at 8:46 am
Smells of any kind have always bothered me but Since GBS, I have the hot metal smell and taste, like the metal is burning. Certain foods taste salty and the hearing is like Julies, I can’t follow conversations in a crowed room or filter out noises but one on one conversation is ok.
AnonymousNovember 5, 2008 at 10:14 am
I have noticed all of the above things from time to time! I hate to make a comment at home or to friends. I feel like I am complaining about the little things too much. But I do find it interesting how many things are that I notice now. I thought it was just part of listening to my body more. But I agree it is weird and I have the same experiences as others:
[*]One stuffy nostril that feels like it is swollen. If I stick out my tongue or curl my tongue up behind my teeth I am able to breath better. OK everyone with a stuffy feeling nose stick out your tongue and take a deep breath!
[*]Hot Burning dust smell like when the furnace is first turned on for the season. Hot metal or burning smell does fit this too.
Right before the onset of my GBS (3 years ago) I had that metal taste in my mouth for a short period.
I woke up with a lot of goop in my eye like an infection or pink eye was starting. Now I have extra tears, I am always wiping my eyes. Seems just a slight breeze or the sun makes them tear up. I wear sun glasses alot of the time. When I get tired the eye lid will droop. I also get this dry feeling like my eyelid is hanging up on my eyeball. Not really dry feeling or not really a sand feeling but it is there and I can not ignore it. I usually just close my eye and take a nap because I know it is due to being tired.
I lost my ability to taste things and they told me the first one to come back was going to be salt. Also, I am not able to eat things and drink things as HOT and COLD as I used to like my foods. I never put ice in my drinks and I am not able to enjoy ice cream or even ice in my mouth. It feels like it is closing my thoat with a spasm. Then I go into a cough and start to choke. Not fun! My digestive track has changed too. I was not able to tolerate milk with meals. Now I can drink it with meals and I actually crave it during the day.
My Optic Nerve was swollen and this was dicovered during my routine eye exam.
I now retain alot of water. Swelling is a big problem. If I use anything that vibrates like the dog clippers or electric razor or driving the car or holding the sweeper, my hands swell as if there is a baseball on the back of my hands. Even in rehab they had a vibrating massage they would do on my hands and they would swell up like they were beaten!
As far as sound, I experienced the same things at the others. Jump at the sounds that would never have bothered me before. Radio and TVs are always too loud. Could not stand to be where a few people were all talking. I would just tune out. I could not concentrate on any of the conversataions it was just too overwhelming. I was able to over come this by getting out in public and out to resturants that were quiet at first or at that time of the day and then would just sit and desensitize. At times I still get overwhelmed like at the check out at a store but in resturants and events where there is a crowd I don’t get as bad. It does not mentally drain my energy either where it did before. Over a loud noise I don’t go into instant tears either. I now can go see fireworks. I still don’t do well if they shot off one bang and I am not expecting it. I really worked on getting this under control by putting myself in those different positions. I had to work hard on controling this and desensitizing my body from reacting to each and every noise. When in the car I used to sometimes hear a car horn or a bell ring during a song. How I don’t know if it is my keen hearing or they have added so much crap into songs than they did before. I get so distracted listening to the things in the back ground of songs like whistles and sirens and animal noises just to name a few! I hear doorbells and smoke alarms and they are the most irritating to me! I am glad to hear I am not the only one to discover all this about my body! GOOD TREAD! It is hard enough to understand all the residuals not to mention all this weird stuff.
November 5, 2008 at 10:35 am
Wow! I was hesitant to post, wondering if I was just imagining the weird smells and tastes.
Julie, I had not considered auditory as I had ringing in my ears for quite some time before CIDP onset. The ringing has increased. I attributed it to age, but the increase has been since CIDP onset. Background noise now makes distinguishing anything very difficult. I have to turned the TV way down. I sleep with one ear plug to help drown out noise to allow me to get to sleep …
Thanks for the responses. I’m glad to know I’m not just weird. (Or at least I’m not weird by myself… ) :rolleyes: It is comforting.
AnonymousNovember 5, 2008 at 12:53 pm
Once again, a great thread! I’m forever asking my husband “do you smell that?” and then I get the weird look 😀 I have always assumed it had something to do with the GBS.
I believe that all of the literature about these diseases need to be updated to reflect what we experience. How I wished that I’d had a “list” early on so that I didn’t feel so alone all those years . . .
AnonymousNovember 5, 2008 at 5:15 pm
Amen to that JudiZ,
I think a book would be the way to go. A compilation of the actual real life stuff. One of the members is an Author. We should get with him and maybe he could do it for the cause. Wouldn’t be a best seller due to rarity. maybe just a handbook then.
I cant talk about the smell thing but my hearing is WAY WAY sensitive.
If I am tired and lay down, Just one abrupt noise and it jolts me. I have been using the earplugs I use when onthe job to reduce the sensitivity. They ring alot too. Drivin me Nuts!
November 10, 2008 at 10:51 am
Discussed Olfactory involvement with my Neurologist last Friday. He was very interested. He wasn’t completely skeptical. He Said he was not aware of any published reports of Olfactory involvement, but would do a search on it. He talked about some tests to try and confirm it. I think he was more interested in confirming olfactory and publishing …
AnonymousNovember 10, 2008 at 1:29 pm
At first I’d attributed the ‘smells’ or lack thereof to the ‘illness’ or the meds.
I’ve still the illness, but it’s more or less stable, and aside from IVIG I’m off most pain meds on a regular basis.
The smell for me is like an electrical burning or short circuit somewhere [and there could still be that?] with nothing to be found.
Of Course, it could be the meds for my other issues? You are very right to bring it up to your Neuro! I think we all should simply ASK! If enough of us do? Maybe it’ll get down the food chain to the right ears.
Actually, Olfactory IS A SENSORY function. Why not? Happens to visual, taste and auditory, these are all part of that external sensory system. Why not?
On the whole tho, sure beats lots of other problems some of us encounter with all this fun and games, no? Hope to all.
As for your doc testing etc? Hooray! Good to see some REAL curiousity in a doc somewhere!
AnonymousNovember 13, 2008 at 12:00 am
I hope that the olfactory involvement proves to be something other than truly olfactory. Here’s why. There are twelve cranial nerves. The optic nerve, the one that takes the signal from the retina and into the brain, is considered a central nervous system nerve. The olfactory nerve also is considered a central nervous system nerve. The other ten, such as those that control the eye, and the auditory nerve, are considered peripheral nerves. If you have either optic or olfactory nerve involvement, either you have an unusual presentation of CIDP or something else [I]may[/I] be going on.
Godspeed in sorting it out.
AnonymousNovember 13, 2008 at 4:56 am
Hey Mark, the researchers now know that there can be central nerve involvement. Many of us have had heart irregularities and breathing problems with diaphragm involvement as well as other parts of the lungs. It has never made sense to me that “only” peripheral nerves could be involved. If they aren’t “talking right” it can affect anything else in the body. All of the nerves are communicators unless disease or injury happens. Give us a few years and we’ll know lots more!
AnonymousNovember 13, 2008 at 7:45 am
I’ve had olfactory involvement now for years. I smell heat, dust and various unpleasant things. Sulfur, tar, burnt garlic. Only in the past few months has it begun to affect taste. My favorite foods don’t really taste the same too much any more. My waist line isn’t complaining, but I really wish my husbands lasagna the other night didnt taste like white chocolate.
Why is everyone seems to smell unpleasant things and not flowers, the smell of baking bread,etc? My neurologist finds the whole thing intriguing and has prescribed Topomax for what he is calling olfactory seizures.
AnonymousNovember 13, 2008 at 9:16 am
The Topomax worked extremely well when I was first placed on it at a
very low dose, which was two years ago. As the smells began to increase in frequency, the dose was raised very gradually. I take 75 mgs in the morning and at night. Dr. C wants to begin to play with other meds to see if there is an effect.
A while back, Dr. C asked me to hold my breath and pinch my nostrils together to see if I still smelled weird things while I wasn’t breathing through my nose. I don’t. I’m not sure what that means – I did ask him but I forgot the answer.
Has anybody developed a heightened scare response? I get startled so easily. Walking around a corner and encountering someone, turning around in a room and being startled by someone’s undetected presence. I get so startled, that I slightly jump, gasp, 😮 my heart starts pounding. It’s ridiculous and funny at times. I could play peek a boo with a 2 year old and get my hiney beat! Or maybe it’s just like my husband things, and I am just a little bit off. 🙂
AnonymousNovember 15, 2008 at 5:05 am
yup – I startle easily now too but not as much as I did a year or two ago, it’s getting better. I think the desensitization has helped though it isn’t really a pleasant process to go through.
Back to the smells thing… I am curious about this because smells are the brain’s interpretation of the chemicals your nose encounters. So what’s off here? Is it:
A) we all have a ‘spot’ in our brains in the exact same place where the smell of hot metal is located… OR
B) we all have damaged nerves running from the smell sensing nerves in our nose and they just happen to misfire into the brain where the ‘smell’ like hot metal is located…. OR
C) we are actually smelling the damaged nerves, does demyelination and/or damaged nerves have a smell? OR
D) I’m just spending too much time obsessing on something irrelevant.
Anyway, I’m just curious about your opinions on why/how this is happening, I’m not expecting expert answers since this is something they’ve obviously never studied before. Interestingly, the past week I’ve had some creeping numbness in my face again – my nose went completely numb which feels really weird, like a perpetural sneeze waiting to come out… anyway, I’ve been noticing the smells a lot more since the numbness came back. Not sure what that says but someone more awake than me might make sense of it. :p
AnonymousNovember 15, 2008 at 5:59 am
Yes, I too have experienced the occasional “strange smell” since coming down with CIDP. It’s alway’s a burning cigarette type smell. I don’t smoke and neither does anyone around me. It doesn’t bother me though. What does bother me however, is my lack of taste for salty and sour foods and most foods are quite bland tasting now. Oh well…
AnonymousNovember 15, 2008 at 6:51 am
I’ve actually had the opposite effects of jumpiness and scarey startles. I used to jump at everything. Now, I can even muster a response to anything scarey or stressful. The only drug I take is Prednisone, and my Ivig occasional treatments. I used to say this disease was because my nerves were shot to “heck”, now I guess I have to find another analogy!
I’m just glad I haven’t lost my taste yet! I don’t have cravings like I used to, but I think that’s because I look at all the yummys as poision because of the side effects of the prednisone. (sugar, weight gain, etc).
And yes, I’ve now got some CNSystem involvement, my eyes are getting worse, and my tinnitus is “turned up”. Going for MRIs of the brain and spinal this morning.
have a good weekend everyone!
AnonymousNovember 15, 2008 at 1:53 pm
I have wondered too about the various involvements. I am sure there are multiple reasons. One, I think it likely that the myelin that surrounds the CNS nerves is a bit different from the myelin that surrounds the PNS nerves, although I have no real proof of this. The reason I think so is CNS myelin is made by oligodendrocyte cells, with one cell myelinating multiple nearby nerves, while PNS myelin is made by Schwann cells, with one associated with a single nerve. It seems likely that there are slight differences in the myelin from each type of cell, such that an attack on one type is not as efficient as an attack on the other. Two, the “porosity”, for lack of a better word, of the blood-brain barrier (that it CNS nerves) and the blood-nerve barrier differ. Some things may transit one barrier more easily than the other, leading to different attacks.
Autonomic nerves, which are part of the PNS and not the CNS, are responsible for the viscera, which includes the heart, lungs (and breathing by a feedback loop), bladder, and bowels. If someone has trouble breathing or with heart regulation and is known to have GBS/CIDP, the problem is likely a PNS problem and much less likely a CNS problem. My guess as to why this subset of the PNS seems to have less frequent involvement is that the nerves are shorter, so the overall damage is less significant.
October 28, 2009 at 10:02 pm
Well, after months of reprieve (and me thinking it’s gone for good), “the smell” is back. 😡 It started again faintly yesterday but noticible and today it’s prevalent.
It’s smells like flint.
(And, oh yeah, it’s even there after I take a bath). 😀
AnonymousOctober 28, 2009 at 11:15 pm
I have been getting a stinging smell like amonia. It freaked me out because I had pain in my back that I thought was kidney pain at the time but turns out that its neuropathic pain cuz neurontin takes it away. the night before the big onset I kept following it around and then i couldnt find it were it was coming from. I finally realized it was my quirky condition like a week ago. so its funny you posted this.
AnonymousJanuary 26, 2010 at 7:23 pm
I had another episode of the ‘burning cigarette’ type odour. It came on when I arrived home after I had been to a family reunion which was quite noisy (no one was smoking) – As my CIDP is sensory – I suppose it could be from sensory overload? I also had horrible electrical sensations in the areas affected by CIDP too before the burning smell. I don’t do too well in noisy busy environments since coming down with CIDP.
AnonymousJanuary 26, 2010 at 9:57 pm
I don’t remember having the smells or odors effect me as much as the noise. I will have to pay closer attiontion. I do notice that all smells seem stronger to me. For example: Coffee, smoke or cleaning products. Now that you have discribed it a little it might help me pay closer attention to my body and what is going on. I do know that after 4 years and 2 months I am not as sensitive to noise like thru that first year. Also, smells don’t take my breath away and make me cough or gag as much! Things are slowly improving for me and my GSD. I will say a prayer for my buddies with CIDP.
AnonymousJanuary 26, 2010 at 11:16 pm
I’ve noticed that at certain times I’ve “smelled” something that I “shouldn’t” have been smelling. I would describe mine as kind of an “oniony-burnt metallic” smell, like the insulation on wiring burning off.
I’ve also noticed, as has my wife, that tastes aren’t the same. I’ve always tolerated spicy foods very well, but lately I’ll think something is horribly spicy, when my wife thinks it’s fine. The running joke for us has always been that she thought ketchup was spicy, so if she thinks it’s “tolerable” and I’m freaking out…something’s wrong. Also seem very sensitive to salt; at times things taste like someone has dumped a pound of salt into my food.
Figured it was part of all this, and another aspect of the sensory involvement. Another thing that is really bothering me lately is a strong sensitivity to cold. I get chilled to the bone, and it brings on finger and toe numbness that will last for hours. I’m not one to take extremely hot showers or baths, but lately have had the hot water cranked to overcome feeling cold, which presents a whole seperate set of problems.
What fun this all is!!
AnonymousJanuary 27, 2010 at 8:30 am
There are some things that I remember from my onset that was caused by the GBS. Nerve senitivity that is on overload. My brain was going a mile a minute trying to process all my thoughts and my body just could not keep up!
Coming out of the reverse side of the illness I can remember them telling me that when the taste starts to come back, salt will be one of the first tastes. Since your sense of taste is based on the sense of smell, I am sure all this is connected. If you don’t beleive it, remember when your Mom said to hold your nose so you would not taste the yucky medicine? If your sense of smell is off, so will your sense of taste. If you lack a sense of smell like many elderly people do you also loose your sense of taste and then don’t enjoy foods and don’t have a good appetite.
I can also remember everyone saying that they noticed a metalic taste in their mouth before their onset. I did not pay any attention to that until I read that on the message board.
Talk about sounds! I remember being a person that you could come up behind and say boo and I would not even react at all. Now you do that and you have to peal me off the ceiling! Just the phone ringing or a car horn will launch me into the air! Not to mention just a person behind me saying something and you would have thought they poked me with a snake. My reaction to noises is actually embarrassing now. It looks fake, but I can tell you I can not control it even if I expect something to happen and try to prepare myself.
After 4 years some of that noise sensitivity has decreased, but it is still there and I have to laugh because of my uncontrolable reaction to things.
One thing that really gets to me is when someone will start to tell me how to get out of a car or tell me to be careful doing something. My body does not handle the noise or stress what ever it is and I go paralized like one of goats that faint. I can not move, I just freeze up! When they stop, it stops and then I just tell them to shut the heck up! Don’t talk to me that way! Then I explain why! My example to them that I fear is what if I was crossing the street and they tell me to HURRY! I feel that would cause me to freeze up and I would not be able to take another step.
Our normal is very weird but I have learned to listen to my body and to tell people how I am feeling and what they are doing to me by trying to help!
Communication with family, friends and your Doctor is key!
Oh and while I am thinking about it the faster you walk will not help me to walk faster. It seems the message from my brain is slow to get to the muscles and the more they repeat steps the fatigued they get! So slow down and walk with me rather than walk so far ahead of me! Slow down and enjoy life! It goes by too quickly!
AnonymousJanuary 27, 2010 at 6:43 pm
Kit, Your description regarding ‘nerve sensitivity overload’ and your brain going a ‘mile a minute’ trying to process information IS exactly how I am after I have been to noisy places – Not at all comfortable!
My taste for salt still isn’t the best – I am still plastering it over my food 😀
I also have to add cold water to my tea/coffee – so my ‘hot’ drinks have to be coolish – otherwise the hot temperature (even lukewarm) is agony for the inside of my mouth.
Some of my CIPD stuff has improved – I can ‘usually’ get out of a chair now without using my arms, though I can’t walk very far and I can eat foods that were too tiring to chew once – but the sensory stuff is still hanging around and yes…it can be quite weird and painful – especially the electrical sensations.
AnonymousJanuary 27, 2010 at 8:41 pm
This is so interesting, I too have had those weird smells. My seems to smell
like the electrical burns. I ev en asked my husband to check our outlets cause I kept smelling something burning. He couldn’t smell it!! I never related it to my CIDP. Makes sense though and boy do I get an education
reading these post. I don’t think my taste has been too affected, but I do hear weird things, not ringing but sometimes I hear a loud pulsating sound in
my ear, I had it before my dx about 2years earlier and had a MRI but it showed nothing and I still get it occassionally. I haven’t talked to any of my
dr.’s about it since then because I always think they will think I’m making it
up or I’m just nuts!! Now I know better…we all can’t be nuts!!
Love ya all,
AnonymousJanuary 27, 2010 at 10:04 pm
Kazza I did not see when your onset was and I do remember some of the painful electrical zings and zaps that I had. Some burned so bad and the pain lingered after till I rubbed it! Other times they made my arm or leg kick or punch. I get them still after 4 years but not as much. I don’t cook at al with salt so I really freak out when I could taste it in soups. I still have trouble with the hot and cold foods they make my cough and choke. I don’t put ice in my drinks and I don’t drink hot drinks until they sit for awhile. Changs in temps like when I go outside or come inside or go into a/c will make me cough and choke. It is like my throat is closing! I did have a trache so figured that was still tied in with that irritation but I am not even sure. Like you I don’t like to complain to the Doctor. But when I do he listens. The severe fatigue is gone and I am doing good and only require a nap here and there! A very busy day will slow me down for the next day! I just go with the flow. I sorta remember smelling burning wiring but your right it is weird when no one else smells it! One big things is feeling my body get the chills like i have a fever and yet my temp is either normal or below normal. I have a sweatshirt on all year round. I look around some days and I am just comfortable and others are in halters and shorts. I look like the bag lady! I very seldom get hot enough to sweat but that finally is starting to change and I did sweat a few afternoons the Summer before last! I try to stay out of the Sun so I don’t get overheated.
Ms Judy I know what you mean but get yourself a Doctor you can communicate to. That is one thing I made sure when switching Doctors. If I feel they don’t know enough about my illness, I go else where!
I am not on any kind of pain meds because my pain was constantly changing hour by hour or day by day or even minute to minute. How do you complain and get meds for something that does not happen all the time and feels different. I took it as a good sign that my body was able to feel and that it was healing. Those were sparks trying to restart my engine! LOL Hard to explain to anyone where the pain was days later or what it felt like on a scale of 1-10 LOL
Take care of yourselves, believe in yourselves!
AnonymousJanuary 27, 2010 at 11:54 pm
Kit, I’ve had CIDP for seven years or so. My first attack was seven years ago, but in retrospect, I think it was coming on a few years before that – starting with numb toes, weakness, tight band-like pain around abdomen, etc. If I still had all of my symptoms play up together 24/7 (like I had during my first attack) I don’t know how I would cope. Thank goodness they (the symptoms) now take turns – and usually play up when I have overdone things or have a virus – though the weakness is always lurking in the background. It’s interesting that you mentioned that you feel like you have the chills when your temp is normal – I have had bouts of shivering where my brain thinks my body is freezing but in reality it isn’t. It can happen in the middle of summer on a hot day – so strange.
AnonymousJanuary 28, 2010 at 12:28 pm
Kazza the next time you get the chills, take your body temp and see if it is below normal! I would be interesting in knowing if that happens to anyone else.
I do know that the nerves near the spine are the ones that control your body temp and when I was in the ICU I was sweating and was wet like i had just got out of the pool. I had them open the window to my room and it was near zero outside. I had a fan turned on me too! I am glad the nurses kept me confortable. I traveled thru the whole hospital from room to room with a fan….when I went to the different levels. ICU, Special Care Unit, Regular Room in the Rebhab Center…..have fan will travel. After about 9 weeks that all leveled out. Then I was always cool and to this day am always under blankets. If you let it, this can really play alot on your common sense! I tend to just laugh at it and go with the flow. Take care!
AnonymousJanuary 28, 2010 at 11:30 pm
I find it fascinating that we all share some of these “small” issues, particularly the lower tolerances to various sounds and smells. I have sensory CIDP like Kazza, and it has resulted in being extremely sensitive to loud noise…and my hearing “improving” so that I can hear very quiet noises in strange situations. I can’t stand the noise, I feel very overstimulated…sensory overload. The same with smell. If I cook something like fish or a curry, or something with tomato and garlic, for example…I feel like I can smell it for ages afterwards. Using room sprays just makes it worse. You end up feeling quite isolated; you don’t want to be around people because of the noise and atmosphere of people having a good time!
I sound abit morose. I am having abit of a relapse. Over the last three days, my feet have been so painful that I can’t put my shoes on again. My body is experiencing electric shocks and burning. The last time this happened I ended up on plasmapheresis. It did really help but I would rather not have to go there again….:( I have been feeling really well lately. I hope that this is just temporary and because I am due for my IVIg. But, I haven’t had this sort of breakthrough pain for quite a long time….
Sorry. Just needed to vent abit.
AnonymousJanuary 29, 2010 at 3:28 am
Kit, I will note what my temp is next time I get the chills and let you know. I also have a laugh at all the wierd ‘things’ that I experience now. It makes life interesting – though it is something I could do without!
Debs I know what you are going through – those electrical sensations are really horrible – and yes, I know what you mean about becoming more socially isolated as a result of sensory overload. I just want to avoid anywhere that is noisy – way too much sensory imput to deal with.
Lets hope your symptoms will subside soon. My electrical sensations played up over the holidays – after doing a bit too much – they have subsided now (touch wood).
AnonymousJanuary 29, 2010 at 5:20 am
I’m totally with you on this one ya’ll. Although my tolerance for noise volume has gotten better such that I can actually stand to be within 50 feet of my husband’s band practicing… my tolerance for chaos has not gotten any better at all. I can take one or two noises but going out to someplace like Walmart with all the people talking in 360 degrees, background music, announcements flying out of loudspeakers like arrows – ugh – I can’t take it, it wipes me out for the entire day. Single directional noise like a TV or a conversation is OK but add anything coming from a different direction and my nerves are going nuts trying to keep up.
And it’s funny about the hearing isn’t it? I mean who would have thought something would actually improve with this disease! But there have been many times when it’s been obvious to me that I hear better than my dogs now. I can hear my husband’s car coming down the road, and distinguish it from all the other cars, when he is still a quarter of a mile away through the trees. The dogs don’t hear him until he pulls in the driveway. 😀
I keep pretty close tabs on my temperature and when I get the chills it usually means it’s going down. My temp. runs as high as 102 and the lows are about 100 (though it got below that once last year) – chills means it’s heading towards the lower end of that range. If you take your temp often, even when you aren’t having chills, you might be able to tell if it’s going down a little or not. I think being sensory-sensitive it’s possible we feel the change in temperature more than your average person would… sort of like some people can’t feel when their hair stands up on their arms (goosebumps) – me, I can feel each follicle.
It makes life interesting having both more and less sensory input – I won’t be getting bored anytime soon, that’s for sure!
AnonymousJune 9, 2011 at 10:39 pm
This afternoon I came home only to smell a really nasty “burning odor” all over the house. It was so strong I worried maybe something was or had been burning. Asked a neighbor to come to check it out. It turned out to be MY nose not hers.
Here it is hours later and the odor is still intense. My nose/throat can feel it. My sense of taste is very impaired. I wondered if it’s the CIDP–my breathing difficulties and/or the thick summer air.
Gary describes it perfectly.
AnonymousJune 18, 2011 at 2:54 pm
Electrical Smells are common, from my reading, with nerve problems…it’s a common complaint in MS patients. People think the toaster is on fire, usually! :p
I have a question: I’ve just had my third sinus surgery in six years yesterday, and I have a severe problem with Nasal Polyps. My ENT thinks I have some sort of “Paranasal Neuropathy”, which causes chronic inflammation, and thus, the polyps. He’s at a loss, though, as to how to treat it effectively.
Has anyone else, with CIDP, had recurrent sinus problems? If so, could you elaborate? I would really appreciate it!
AnonymousOctober 14, 2011 at 10:20 pm
I’ve “smelled” something pungent for one whole week”’ I know it’s the neuro thing but still I have cleaned the kitchen, the sinks and scoured everything that might possibly smell.
It’s that awful electrical burning smell and I’m so tired of it.
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