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debbie-b
07-06-2009, 08:47 AM
Besides the joint and muscle pain I have every day, I have these other symptoms for a while now, but they are getting stronger all the time.
My sense of smell is getting so strong, I can smell things before anybody else can, good and bad smells. Same thing with taste, things taste spoiled to me, long before anybody else can taste it. My hearing is getting ( I don't know if you want to call it better), but all of a sudden I can hear background music,I couldn't hear before. Now loud noises are driving me crazy, I am constantly turning down the volume on the tv and I am always turning off the radio in the car. I can't stand being touched, my skin, or better my tissues hurt, I am very sensitive to touch, it just hurts. My poor husband, he loves to touch and hug me,or just hold me, but lately I pull away alot, because it just hurts. He gave me a gentle massage and ran his fingers down my spine, it hurt like I was being stabbed with knifes. My spine is very sensitive. I used to enjoy sleeping in his arms, now I can't even stand the cover against my body. Are these also lupus symptoms, does anyone else have this problem?

Debbie

Ang123
07-06-2009, 09:19 AM
Hi debbie - I can't really answer your question but thought it was odd that I feel like the opposite is happening to me. I used to be really sensitive to smells and now I'm not at all. I babysit and it's bad because a lot of the time I can't smell the poopy diapers! Not bad that I can't smell that smell, lol, but bad because I don't know to change them right away. Usually one of my children (who are no longer in diapers) will inform me of the 'odor" before I smell it. My skin also isn't very sensitive anymore. I have to be careful in the shower because I can't really tell if the water is too hot and sometimes I get out and my skin is really red! Sorry I don't have any answers but hopefully your hypersensitivity (I just made up that word, haha) will go back to "normal" soon!!

Ang

debbie-b
07-06-2009, 09:29 AM
Hi debbie - I can't really answer your question but thought it was odd that I feel like the opposite is happening to me. I used to be really sensitive to smells and now I'm not at all. I babysit and it's bad because a lot of the time I can't smell the poopy diapers! Not bad that I can't smell that smell, lol, but bad because I don't know to change them right away. Usually one of my children (who are no longer in diapers) will inform me of the 'odor" before I smell it. My skin also isn't very sensitive anymore. I have to be careful in the shower because I can't really tell if the water is too hot and sometimes I get out and my skin is really red! Sorry I don't have any answers but hopefully your hypersensitivity (I just made up that word, haha) will go back to "normal" soon!!

Ang


Thanks Ang

It is really weird, that you are the exact opposite, wow I am confused ( it doesn't take much these days LOL).

Debbie

Terente
07-06-2009, 12:12 PM
Besides the joint and muscle pain I have every day, I have these other symptoms for a while now, but they are getting stronger all the time.
My sense of smell is getting so strong, I can smell things before anybody else can, good and bad smells. Same thing with taste, things taste spoiled to me, long before anybody else can taste it. My hearing is getting ( I don't know if you want to call it better), but all of a sudden I can hear background music,I couldn't hear before. Now loud noises are driving me crazy, I am constantly turning down the volume on the tv and I am always turning off the radio in the car. I can't stand being touched, my skin, or better my tissues hurt, I am very sensitive to touch, it just hurts. My poor husband, he loves to touch and hug me,or just hold me, but lately I pull away alot, because it just hurts. He gave me a gentle massage and ran his fingers down my spine, it hurt like I was being stabbed with knifes. My spine is very sensitive. I used to enjoy sleeping in his arms, now I can't even stand the cover against my body. Are these also lupus symptoms, does anyone else have this problem?

Debbie

One small story related to your symptoms.I hear old Tv noises in the background that nobody hears!I,ve been tols there are low frequences that we are not suppouse to pick them up! Strange,we`re turning into more evolved huma beeeings i guess:wacko:

Ang123
07-06-2009, 02:31 PM
Perhaps it's something that comes and goes with flares?? Always a new mystery... Looking forward to other responses!

Ang

crmj1183
07-06-2009, 03:40 PM
debbie,

I feel like yu sometimes.... I guess its like a flare or something maybe a symptom of lupus??? Im sensitive to touch sometimes not all the time, but i have my times when i dont like to be touch because it is painful. My hearing is supernatural I can hear any and everything. Its like i have bionic eaqrs or something, noise does drive me crazy too. As far as taste sometimes I think things taste weird??? I guess, people say Im tripping or its in my head:wacko:. But I know Im not crazy. I just tell people Im a mutant lol

You are not alone
Chriss

Stacy
07-06-2009, 04:16 PM
Debbie, I'm sorry to hear of your new symptoms. I sometimes have the same problems with the sense of smell, taste and hearing, but not so much with the touch bit. It reminds me a lot of when I was pregnant, everything would seem more enhanced, I guess you could say. There are days where noises seem more intense, and I'll have this high pitched ringing or buzzing. The odd smells and tastes cause me to feel nauseous. I wonder if the lupus flares cause our senses to become more heightened.



One small story related to your symptoms.I hear old Tv noises in the background that nobody hears!I,ve been tols there are low frequences that we are not suppouse to pick them up! Strange,we`re turning into more evolved huma beeeings i guess:wacko:

:laugh: That is too funny!!! My ex (who is also my best friend) stayed this past weekend with us. He knows what I've been going through and has been incredibly understanding and supportive for me. Saturday night and Sunday morning I was waking up in pain every 20 to 30 minutes and having to change position, sit up and sometimes even stand up to try to walk the pain out :wacko:. This of course would wake him up. Exhausted, and feeling in pain, but also feeling bad that I kept waking him up through all of this because I knew he had a paper he needed to finish in order to meet his midnight deadline on Sunday , I just told him "guess this is what it feels like to mutate. Maybe those of us with lupus are just starting to evolve faster than you all". Him, being a scifi junkie thought this was the funniest thing he heard, laughed. Then, without missing a beat he looked at me as seriously as he could and said "So, what's your super ability going to be, constant pain?"

It's amazing how humor helps us get through some of the toughest things we have to go through. I don't know if we were both just completely exhausted or what, but we were laughing about that for a good 15 minutes. Today he sent me a morning text asking how his favorite mutant was feeling and if I've uncovered any actual useful superior abilities. :cute:

Danica01
07-06-2009, 08:01 PM
We should all be featured in the next X-Men movie as mutants :-) I also feel like that sometimes but maybe we are the normal ones and everyone else is strange..........hey, it was a nice though!!!!

I do not have the sensitivity with hearing, smells or seeing things, I have the opposite in those areas. The one thing I can agree on is that my skin hurts. Sometimes it hurts more than others but just the other night my left leg hurt and it wasn't as if the pain was inside, it was right on top....in my skin! If I touched my skin I would just shutter. Tim is great when this happens. We know that part of the problem is that my neurons receive pain different and therefore, he rubs my arms or back and this helps my body to focus on another feeling. I know it may sound silly but it really does help. When I was getting those enormous shots in my head, Tim would do this each time and they really helped and my neurologist said there was something behind it all. So, next time your skin hurts, have your husband gently tickle your arm or back. I am sorry you are going through this, it is not fun! I am sending you very gentle hugs and thoughts of a painless night :hug:

debbie-b
07-07-2009, 03:29 AM
Thank you guys,

At least I know, that I am not a freak and other people get these weird things too. My husband is so great, before he touches me, he will ask, which part of my skin does not hurt. The bionic hearing is ok, except for loud noises. The enhanced taste is ok, unless it is something gross. But I tell you the enhanced smell can be pretty disgusting, when you work with the public, yuck body odor, urin odor and poopy diapers. Oh and the fish department in the grocery store, I can smell it, my husband can't. I haven't eaten fish in a long time. But I can also smell the good aromas, not good for the figure.

Debbie

lucky7
07-07-2009, 03:43 PM
AWWWW Debbie, i just wanted to say that what a GREAT husband you have! It was so sweet to read about him touching you a lot and messaging you too!! Even though it hurts you!:shocked: I too have all of what you listed, in fact when my ENT did a hearing test he said "wow girl, you have GREAT hearing!" I said "yeah i know but i DONT like it or want it!":wacko:

Danica01
07-08-2009, 10:49 PM
Hi Debbie! I am just checking in to see how you are feeling this week :angelic:

debbie-b
07-09-2009, 02:03 PM
Hi Debbie! I am just checking in to see how you are feeling this week :angelic:

Thanks for asking, I feel the same, in one word SUCKY. I think it is a huge flare.

Debbie

lucky7
07-09-2009, 02:26 PM
AWWWW, so sorry for your huge flare Debbie:no: Hope it passes soon for you. GENTLE HUGS XXXXXXXXXX

debbie-b
10-09-2010, 08:38 AM
Hi friends,

I have to bring this up again.
I am still dealing with the same things, as I did over a year ago, when I first posted this.
I told my rheumy about it, but he dismisses it. It is something, that started about a year and a half ago, out of the blue. There must be a reason for it, or am I just an idiot?
All these symptoms are very disturbing to me and very bothersome.
Yesterday I went to our local grocery store, a very nice upscale store.
When you walk in, the kart corral has a tile floor, hearing the people push their karts over these tiles, the noise hurt, not just my ears, but my whole body.
Right next to the entrance is the bottle and can return, it was so loud, that I thought, I would loose my mind.
Then after entering the store they had a message over the intercom, something about a car in the parking lot, it was repeated three times, OMG the noise.
After that I had to walk past the fish department, the smell almost killed me.
Driving home from the store, the seatbelt really hurt my skin, or better the tissue under the skin, I couldn't wait to take off the seatbelt.
When I was finally home, I could barely carry in the few groceries I bought, I dropped them on the floor, when I walked into the house, that is where they stayed until my husband came home, thirty minutes later.
What a life.

Debbie

Islablue
10-09-2010, 02:50 PM
Debbie, I think that I may be experiencing something similar to what you are describing. I don't feel it all the time, but I know I have a few times. Sometimes noises or certain "normal" motions (ones that wouldn't hurt anyone) send this response through my body like a pain/vibration. Smells are disturbing most of the time b/c I'm very sensitive to them. My skin has hurt like that a few times. Just someone brushing up against me was torture. Even having my bra strap graze my shoulder hurt like the skin was tender. I know what you mean. It's like.. gimmie a break here! haha

Linda From Australia
10-09-2010, 06:01 PM
Hopefully you are starting to feel a bit better Debbie. I suppose one of the reasons why Lupus is called Lupus is because it sends people Lupie, or other people might think you are a bit Lupie, especially certain doctors because they don't have any answers. I was getting all stressed out about heaps of different things going wrong, wondering if it was Lupus or not. Then someone told me to accept that life is going to be difficult and focus on what I can do to get through the difficulties instead of focussing on how it is limiting me and my life.

Point 1 - loud noises - Therefore I was thinking about your situation about loud noises at the shops. Have you got an mp3 player or iopd music thingy? You could listen to that to distract you from the other distracting noises. My 22 yr old daughter has autism and she cannot stand hearing babies or toddlers making their usual noises on the bus, so she listens to music that does 2 things. Calms her down and distracts her

Point 2 - the smells of fish - urgh - I also think it is disgusting and try to avoid the smelling fish section as well, however it does not make me feel sick. How about eating some hard lollies. If I eat certain cough lollies, especially eucalyptus ones, that is all I can smell, or taste. This might help you drown out the fishy smell.


Point 3 - seatbelts. Here in Australia we have sheepskin pouches or padded fabric to put on the top of the seat belts so it doesn't rub into the small kids necks. Perhaps you might also have that in America. YOu might have someone who could make one for you. This picture might help you to see what I mean.
http://www.bigw.com.au/sports-leisure/motoring/steering-wheel-seat-belt-covers/bpnBIGW_0000000001554/sperling-royal-sheepskin-seat-belt-comfort

Point 4 - Carrying bags into the house. DO you have an esky? That is a cooler where you put cold food in when you go on a picnic. Pack your shopping in them so they can last a bit longer in the car until someone comes home to unpack the shopping for you.

These tips might help, or someone else might have some better ideas. Don't wait until you are feeling unwell before you set up some alternatives, be prepared in advanced so all you have to do is to just slip into the 'Flare first aid'. Let us know what you do to make life a bit easier.

magistramarla
10-09-2010, 09:20 PM
Debbie,
These sound like neurological problems to me. Your doc needs to address them rather than dismissing you.
Hugs,
Marla

debbie-b
10-10-2010, 04:49 AM
Debbie, I think that I may be experiencing something similar to what you are describing. I don't feel it all the time, but I know I have a few times. Sometimes noises or certain "normal" motions (ones that wouldn't hurt anyone) send this response through my body like a pain/vibration. Smells are disturbing most of the time b/c I'm very sensitive to them. My skin has hurt like that a few times. Just someone brushing up against me was torture. Even having my bra strap graze my shoulder hurt like the skin was tender. I know what you mean. It's like.. gimmie a break here! haha

Thank you for responding.
Like you, I don't have it all the time, but most of the time.
Some days it hurts to wear my pants. And boy, if there is a tag in my shirt, I better find some scissors, so that I can cut it out. Because it will go from feeling uncomfortable to pain in no time at all.
I am sick of it all.

Debbie

debbie-b
10-10-2010, 05:02 AM
Hopefully you are starting to feel a bit better Debbie. I suppose one of the reasons why Lupus is called Lupus is because it sends people Lupie, or other people might think you are a bit Lupie, especially certain doctors because they don't have any answers. I was getting all stressed out about heaps of different things going wrong, wondering if it was Lupus or not. Then someone told me to accept that life is going to be difficult and focus on what I can do to get through the difficulties instead of focussing on how it is limiting me and my life.

Point 1 - loud noises - Therefore I was thinking about your situation about loud noises at the shops. Have you got an mp3 player or iopd music thingy? You could listen to that to distract you from the other distracting noises. My 22 yr old daughter has autism and she cannot stand hearing babies or toddlers making their usual noises on the bus, so she listens to music that does 2 things. Calms her down and distracts her

Point 2 - the smells of fish - urgh - I also think it is disgusting and try to avoid the smelling fish section as well, however it does not make me feel sick. How about eating some hard lollies. If I eat certain cough lollies, especially eucalyptus ones, that is all I can smell, or taste. This might help you drown out the fishy smell.


Point 3 - seatbelts. Here in Australia we have sheepskin pouches or padded fabric to put on the top of the seat belts so it doesn't rub into the small kids necks. Perhaps you might also have that in America. YOu might have someone who could make one for you. This picture might help you to see what I mean.
http://www.bigw.com.au/sports-leisure/motoring/steering-wheel-seat-belt-covers/bpnBIGW_0000000001554/sperling-royal-sheepskin-seat-belt-comfort

Point 4 - Carrying bags into the house. DO you have an esky? That is a cooler where you put cold food in when you go on a picnic. Pack your shopping in them so they can last a bit longer in the car until someone comes home to unpack the shopping for you.

These tips might help, or someone else might have some better ideas. Don't wait until you are feeling unwell before you set up some alternatives, be prepared in advanced so all you have to do is to just slip into the 'Flare first aid'. Let us know what you do to make life a bit easier.

Thank you for your tips.
I don't have a music thingy,lol. When I have a real bad day, I can't even listen to music, it makes me feel worse.
That is funny, I did try the eucalyptus, it smelled like there was a fish in eucalyptus field.
The seat belt sheepskin is a good idea too, but like I said, some days even my clothes hurts, or the hair brushing over my face.
My husband got mad at me for going shopping by myself that day, I am really stupid, all I have to do, is call him and ask him to pick something up from the store on his way home from work.
Thank you again for all your great tips, but as you can see, I am a freak, normal things don't work for me.lol

Debbie

debbie-b
10-10-2010, 05:05 AM
Debbie,
These sound like neurological problems to me. Your doc needs to address them rather than dismissing you.
Hugs,
Marla

Do you mean I am crazy? JUST KIDDING.
Many times I have thought about it being a nerve thing. Since my rheumy is, to put it nicely, a moran, I will talk to my primary.

Debbie

Nonna
10-11-2010, 03:57 AM
Debbie, I agree with Marla, it sounds more like my neurology problems than lupus. Neurology problems aren't crazy, just annoying. My advise would be to talk to a neuro, the symptoms sound migraine related or other neuro problem.

Cyber hugs are good at this point. Don't let the creepy crawlies get you down, work it through

nonna

zandanric
12-16-2010, 10:24 PM
OMG im so glad i found this site!!!! I keep going to the doctors with the same thing your going through and they just keep sending me home telling me idk whats wrong. After i had an alegric reaction to a med that made me feel as though my skin was on fire every inch of my body hurt and i could hardly move, and i even got tiny red blisters in spots... my joints hurt my skin hurt it hard to even hold my son without have pain. :'( Now im left with this rash that comes and goes on my face the only part that doesnt turn red is around my mouth my whole face tingles and burns. I go outsdie and shop i start to get clamy yet my face is on fire, then i shake and sweat. when i get home i have to just drop every thing drink the largest glass of ICED water and i passout like i just ran in a race arount he world... this is just some of the poo im going through... I have had some blood work and one er dotor said i have to get tested for lupus. I had high proten in my blood and urine, i have high sed rate and tested positve for the rumatoied test... he wants me to get tested with a Neuro doc first before he get another blood test...

reading all your post makes me tear up my dry itchy eyes lol :') i dont feel so crazy

tgal
12-16-2010, 10:30 PM
OMG im so glad i found this site!!!! I keep going to the doctors with the same thing your going through and they just keep sending me home telling me idk whats wrong. After i had an alegric reaction to a med that made me feel as though my skin was on fire every inch of my body hurt and i could hardly move, and i even got tiny red blisters in spots... my joints hurt my skin hurt it hard to even hold my son without have pain. :'( Now im left with this rash that comes and goes on my face the only part that doesnt turn red is around my mouth my whole face tingles and burns. I go outsdie and shop i start to get clamy yet my face is on fire, then i shake and sweat. when i get home i have to just drop every thing drink the largest glass of ICED water and i passout like i just ran in a race arount he world... this is just some of the poo im going through... I have had some blood work and one er dotor said i have to get tested for lupus. I had high proten in my blood and urine, i have high sed rate and tested positve for the rumatoied test... he wants me to get tested with a Neuro doc first before he get another blood test...

reading all your post makes me tear up my dry itchy eyes lol :') i dont feel so crazy

Hi Zandanric! Welcome to WHL! Take a deep breath and then exhale because you are not crazy! You have found a place where the people understand exactly what you are talking about because we go through it as well. There are still times I read something here and I tear up because, once again, I don't have to feel alone.

We can't fix everything for you but we will be here for you. Please make yourself at home. Look through the old threads because there is so much good information in them and please feel free to start new ones if you wish. There are wonderful people here and I know I speak for everyone when I say that we look forward to getting to know you!

Nonna
12-17-2010, 04:31 AM
Ditto to what Mari said

zandanric
12-17-2010, 05:15 PM
thanks! im just so glad to know that you all are here! I sat for hours the first day a came here and looked up a bunch of my syptoms and every single one was like reading a book about myself! Now i just have to keep on top of my doctors and make them help me! Funny I just keep saying god when will i feel normal again, now that i read you guys storys i feel normal... some kind of normal anyways!

Debbie I feel what you feel everyday :) hopful we all can get some sort of handle on this! My doctor has tried me on every anti nausea pill im now taking some for chemo, and cancer... it sort of helps...

After a "flare" and you have to lay and sleep do you feel light headed and its like a presser in your head and you can feel your head is throbing with your heartbeat if you move before its more stable and if you move too quick OMG? i get spots in my eyes too. its like the sound hurts you...

debbie-b
12-18-2010, 06:30 PM
Unfortunatly I still feel the same, pretty lousy.
A coworker came up behind me, to give me a massage, I jumped up in pain and almost ripped her head off.
Poor thing, she meant well. But it hurt so much.
I am going to get a referral to a neuro, when I see my rhuemy on 12/30.
I really think like Marla, that it is a neuro thing.

Debbie

LanaS
12-28-2010, 05:29 AM
Hi Debbie!

Seeieng a Neuro is great but I think there is just quite a bit of neuropathy that goes along with SLE. My taste buds are so sensitive that ketchup burns my tounge, LOL And of course my sense of touch is painful and off the charts, I have to have pain meds to play with my boys and I homeschool. So esp at night I have enforced a 30 min "mommy time out" during this time I take my meds and they are not allowed to touch me. My husband has caught on to this so when he wants to hold me or be intimate he will say "honey why don't you go take your mrds, LOL