physically to accomodate fibro, anyone else.

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Sue2z
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Date Joined Jul 2008
Total Posts : 368
   Posted 9/19/2008 12:10 AM (GMT -7)   
turn   turn This sounds silly I know but I cant even hold a book without it affecting my shoulder joints then up my neck, looking down at the book starts my neck burning and now I get my books on the net.  Also I can only use an arm chair and when I go out I stuff my handbag full of material and use it like a cushion on my lap. I am unable to lie down for more than few minutes and to go to sleep require meds .   Does anyone elses pain worsen when they lie down.....?
anyways every thing I do I unconsciously think about and alter my body.  Even tying my hair back hurts, and my clothing hurts
If I said to anyone outside they would think im crazy.... turn turn turn    sue2z
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


AustenFan
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   Posted 9/19/2008 6:47 AM (GMT -7)   
Sue2z,
 
I think I know exactly what you are talking about.  Most everyday, normal activities can and do cause me pain.  Talking on the phone (my arm starts to hurt), using the computer (my shoulder hurts), writing (my hand hurts), sitting in a hard chair (back, legs, and bottom hurt).  And yes, even my clothes hurt.
 
I've tried to make lots of accomodations to help:  I use a speakerphone.  I use an address stamp instead of writing return addresses.  I wear the most casual, comfortable, soft clothes I can find (I got over the whole fashion thing a long time ago).  I even had to consider the kind of seating my church has before I joined it. 
 
Yes, it is also difficult for me to find a comfy position in bed.  My husband teases me that I'm like a dog trying to make it's bed.  rolleyes
 
So, I certainly don't think you are crazy!!  smilewinkgrin
 
Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


d2parrotperson
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Date Joined Aug 2008
Total Posts : 320
   Posted 9/19/2008 9:44 AM (GMT -7)   
To all the above; YES! You just need to adjust and readjust until you find the least painful way of doing something. I do however, find comfort in laying, or half sitting in bed, usually.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
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Stephanie
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kellieak
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Date Joined May 2008
Total Posts : 68
   Posted 9/19/2008 9:53 AM (GMT -7)   
I have become very sensitive to things like clothing. sometimes just the pressure of clothing on my skin is painful or uncomfortable. comfort has become a bigger priority then fashion. lol I have also become really particular about the bed linen. my husband thinks I am being fussy, but I swear it makes a difference in how well I sleep. if the bedding is all messed up and I end up sleeping on wrinkles in the bedding, I don't sleep well. but if the bedding is all neat and smooth, I know I feel more comfortable. I wish he would be a little more understanding about this instead of just thinking I am being AR. he says I am the princess and the pea.

writing by hand is very painful for me too, I can't do it very long anymore. so I type instead. I have started wearing wrist braces to bed for cts and that isn't helping me sleep much, my hands ache in them.

Marlee2
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   Posted 9/19/2008 10:38 AM (GMT -7)   
I'm finding holding a book and reading more difficult with my hands and my neck. I'm a princess and the pea when it comes to my bedding and pillows. Fashion went out the window a long time ago and it's all about comfort, especially when it comes to bras.
 
I went shopping the other day and went to five stores, there was one more place I wanted to stop but just did not have the energy to do it. The thing is if I had not had to walk from the parking lot into the stores and back out to the car I could have saved a lot of energy and made it to a few more stores. So for the first time I thought how nice it would be to have one of the scooters for big shopping trips like that to save energy so I could do more shopping. I don't get into any of the larger cities around us that often so I needed to get as much done as I could and I only have so much energy a day. I'm sure I won't be getting one but I did have that thought.
 
We do have to rethink the way we do things but for me that is so I can do more of what I enjoy doing.
 
luv and hugs
Marlee
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Meggie
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Date Joined Jul 2008
Total Posts : 408
   Posted 9/19/2008 10:42 AM (GMT -7)   
Kellieak,

My husband says the same thing, he thinks I'm the princess and the pea. The same thing, I want the bed neat or I can't get comfortable. I'm like that with my feet too. I have to wear thin socks with a thin seam, no seam if I can find them, and the shoes need to be light and flexible and tied loosely. I'm also starting to notice in my shirts that the seam under the arm is irritating my arm. It's loose but still hurts when it touches my are.

Sue2z, you are definitly not crazy. I know it's not fun but we find a way to live with these irritating systoms. Just when I think I have things under control something else pops up but I just try to move forward and learn from what I'm experiencing.

Meggie

RedDiane
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   Posted 9/19/2008 1:09 PM (GMT -7)   
I wear satin pjs, because I have to change positions in bed so frequently. If I lay too long on one side, my shoulder hurts, too long on my back, my kness hurt, etc. The dr. also told me I should get satin sheets, it's much easier to toss and turn. I also can't stand to wear heavy clothes, like winter things.

Marlee--I'm going to rent one of those scooters when we are in Orlando, so we can go to theme parks. The last time we were there was 4 or 5 years ago, and I just died trying to walk around. I'll let you know how it goes.

Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


AustenFan
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Date Joined Aug 2008
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   Posted 9/19/2008 1:22 PM (GMT -7)   
Shopping has become so difficult.  I keep telling myself that I need to start a clothing line for fibromites (soft, no seams, etc.).
 
Maybe we should all get together and start a clothing, furniture, and bedding line for people with chronic illnesses.  idea smilewinkgrin
 
(Oh and Marlee, it would be completely online so no running around stores!)
 
Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


Marlee2
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   Posted 9/19/2008 3:36 PM (GMT -7)   
Diane, are you slip sliding around all night??? tongue I have thought about satin sheets but we had them many years ago and DH didn't like them so I haven't brought it up. I know they don't wrinkle like cotton ones. Geez, looks like another shopping trip for me.
 
Austen, I love to shop, my favorite sport. smilewinkgrin That's why I get upset when the body gives out when the brain is still wanting to look.
 
Pillows are a biggy with me and what may feel fine one night doesn't feel right the next night. I even starting making my own out of fiberfill and pillow covers with zippers in them.
 
I'm going to order a truck load of cotton balls and put them on the bed with a net around them and see how that works. turn
 
I wore jeans today and it felt like they weighed a ton.
 
I want someone to make an invisable bra that I can't feel. No matter how big I buy them they are still torture, but right now even my breast are sore.
 
Yes, we do need to start our on line of bedding and clothing for fibromites. Which one of you have the energy for that???
 
luv and hugs
Marlee
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
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Statgeek
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Date Joined Jul 2008
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   Posted 9/19/2008 4:37 PM (GMT -7)   

I totally agree!  When I am having a flare, I guess, I cannot wear necklaces because they pull down too much.  Also do not like collars that touch my neck.  Purses or laptop bags hurt.  I hate walking into stores, too sometimes.  It gets exhausting.  Lately I have had to think about where I want to walk and decide if it is worth it or not.  Sometimes when walking across campus I try to think of excuses to stop and rest because I feel silly stopping when I only went a little way.  Does anyone have a handicap placard for their cars?  My dh suggested I get one for days when I am in pain. 

Sue


Dagger
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Date Joined Apr 2008
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   Posted 9/19/2008 6:17 PM (GMT -7)   
I can only wear light-weight necklaces and not all the time. I can't stand collars touching my neck. I wear sneakers all the time, even with skirts and dresses. I can't wear earbuds, and headphones hurt after a short time making it tough to use my MP3 player when walking.

My bra comes off as soon as I get in the house, we always have to do a quick check between the couch cushions when company comes. Once, a repairman man sat on my couch to write his report and when he stood up, my bra was hanging from his tool belt. We still laugh about it.

My job now requires that we wear an ID badge. I can't stand the lanyard around my neck. It feels like a 20 lb weight pulling me down. I can't clip it to my shirt, either it hits me when I walk, visually distracts me, or I forget to take it off and wear it the next day. I carry it around in my hand

Many stores have scooters you can use, I always take advantage of them after surgery. Stores in my area have made their aisles so narrow, you can't go anywhere if another person is in the aisle. Turning corners takes more skill than driving a car. My husband has gotten store managers to move displays because they were blocking the path of the scooter.

RedDiane
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   Posted 9/19/2008 6:43 PM (GMT -7)   
Sue, I did finally get a handicap sticker for my car. I mostly use it when I am at the two universities in this state, because their parking is just ridiculous. We used to pay $15 to park more than two miles from the football game. I figure I have paid enough tuition to these schools, one kid each, that they can let me park in handicapped zones. When the weather gets really bad I might use the handicapped parking other places, too. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


GamJill
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Date Joined Jun 2008
Total Posts : 1279
   Posted 9/19/2008 7:00 PM (GMT -7)   

Hi Sue-

I can only sit so long, stand so long, write so long and it will start affecting me too. Even before I got fibro I did not like heavy sweaters or heavy coats or jackets in the winter on my shoulders. I know I flip/flop through the night to get comfortable. PJ's have to be cotton and loose.

Marlee- I get frustrated too when I want to keep shopping and my body is telling me another story. Do you have a handicap sticker?

Statgeek- My Dr. and I applied for a handicap sticker/card and sent it in ages ago. Have not heard a thing yet.

GamJill


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
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Sue2z
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Date Joined Jul 2008
Total Posts : 368
   Posted 9/19/2008 7:16 PM (GMT -7)   
Hi all, thanks so much for the replies, I never thought so many and all so similar.  Writing, Bra's ,clothing hurting , bedding , standing in lines, shopping so much.  Tip on bra , I has so much pain I brought a strapless it has been a big help.  Seeing all those replies and the similarities has made me feel so much better.  I have to wear oversize clothing now.  Someone asked me if I was pregnant, at first I was so upset, but then had to laugh. Now I have a couple nice things just for goiong out even though they hurt, I put tape on seams sometimes,  everyone try a strapless bra.  thanks for the replies made me so much better .   bye sue2z smurf smurf smurf
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Southernlady
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Date Joined Jun 2008
Total Posts : 844
   Posted 9/19/2008 7:56 PM (GMT -7)   
I have so many of these same problems.  I do have a handicap sticker for my car, but it is really my dhs.  He had an accident when he was 35 years old and crushed his ankle so he had one when we married.  BTW, all we have to do is go to the county clerk's office and renew it about every 5 years.  He had to get a drs. statement the first time but it is renewable here in KY there after.  I'm sure all states have different laws about it, but that's a good place to check it out.
 
I have found a solution to wearing a bra though.  Do any of you ever see the adds in magazines for the sleep bra?  They hook in the front and they are soooooo comfortable.  I don't wear them all the time, but I especially like them in the winter when I'm wearing sweatshirts or loose clothing. 
 
I can't stand in line at the grocery for very long and my dh does have trouble understanding this sometime. 
 
I don't like satin sheets neither.  I bought some one time and my pillow woudn't stay on the bed because it was so slick.
 
Maybe as time goes by someone will invent more products for us fibromites and maybe someday people will understand our needs more.
 
God Bless!
Shannon
Of all the things that I have lost, I miss my mind the most!!!!


Statgeek
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Date Joined Jul 2008
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   Posted 9/19/2008 8:33 PM (GMT -7)   

And the shoulder strap on the seatbelt!!  Ouch.   I toss and turn at night too.  I get tangled up in my night clothes.  But I can't sleep naked because then wherever I go in my dreams I am naked redface and it's difficult to sleep when you keep dreaming you are naked at the store or school!  Diane, Maybe I will try the satin sheets, but I had the same problem as Shannon.  I got the satin pillowcase for wrinkle repellant and the dang thing kept falling off the bed!  I know!  Velcro the pillow the the bed!  wink    Suez, seriously, the strapless bra helps?  You don't have to get it so tight you can't breathe so it doesn't fall down?   Has anyone tried "body by victoria"?  They are $40+ each, but I won't use anything else.  You can get them in awful colors like orange or puke green during their semi annual sale, but they are really cheap then.

Best,

Sue


Waterbaby
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Date Joined Aug 2008
Total Posts : 96
   Posted 9/19/2008 9:03 PM (GMT -7)   
I know what you mean. My neck will start to feel better and then just reaching for something will make it start to hurt like crazy. Same with my shouder pain (between my shoulders). When I try to mop the floor especially it will hurt again. Talking on the phone also brings on pain. It's soooo frustrating.

Dagger your story about the repairman with your bra hanging from his toolbelt made me bust out laughing.

Hope
bulging discs in neck & thoracic region, low back pain, arthritis in lumbar region, diabetes, high blood pressure, depression, anxiety,
meds: enjuvia, pristiq, actos, amaryl, lyrica, hyzaar, elavil
 
 
"Two paths diverged in a yellow wood, and I, I took the one less traveled by...And that has made all the difference."  Robert Frost


Sue2z
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Date Joined Jul 2008
Total Posts : 368
   Posted 9/20/2008 1:12 AM (GMT -7)   
In aus dont have many choices available as the states.  I use the strapless bra but I buy a bra extender other wise I couldnt get the thing on.  I wear it so the strap is loose and only tighten it when in company.  It slips down alot as I have it so loose but it looks presentable to bouncing around without.  Fraid not heard of Victoria.  In Perth I sometimes feel we are in a litttle country town.   sue2z.     I really relate to the neck and shoulder probs my neck starts to burn so easily.   sue2z cry cry
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


GamJill
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Date Joined Jun 2008
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   Posted 9/20/2008 6:10 AM (GMT -7)   
Statgeek (Sue)-
Thats all I ever wear is "body by victoria!" They are the best for me. Thanks for the idea of getting the other "off" colors during their sale, I never thought of that. :)

Dagger- I did forget to mention how hard I laughed with your story about the repairman yesterday too!!!!

GamJill
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
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Statgeek
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Date Joined Jul 2008
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   Posted 9/20/2008 12:41 PM (GMT -7)   
SueZ - body by victoria are by victoria secret. You remember those outrageously skinny girls dancing around in their underwear on the victoria secret commercials? Those are awesome bras. I got a couple on ebay, too. That was a good deal.
Sue

donnaeil
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Date Joined Jun 2006
Total Posts : 1156
   Posted 9/21/2008 1:29 AM (GMT -7)   
Amen to everything said.

The bed - I am finally going to buy silk/satin (?) sheets and give them a try.

I hate sheet wrinkles they hurt

I use a wheelchair for shopping, cleaning, cooking and going places

Only the water in the swimming pool feels good when it touches my body

Holding books is hard. I read a lot so I feel a lot of pain.

My clothing line is quickly moving towards cotton sweats with gentle elastic only.

My breasts hurt (as previously mentioned) Near the rib cage they are down right painful.

And whatever else folks have mentioned.

BTW, clothing for chronically ill people that is on the market today is downright ugly. Since our populations are aging, a talented designer is needed so if any of you have the skills, start sewing and manufacturing.

I have never met a bra that I liked.

Donnaeil

Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/21/2008 8:33 PM (GMT -7)   
To Donaeil, I know what it is like to love to read and then cant.  I had to resort to getting them onto the computer, its not the same but at least I can read now.  Reading use to be everything to me.

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Irish Babe
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Date Joined May 2007
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   Posted 9/22/2008 11:33 AM (GMT -7)   

I don't wear a bra anymore, I tried to wear for business or church, but it just hurts too much. The straps are bad, but the clasp on my back area is the most sore spot on my body. I can't stand for any length of time, like to go shopping, grocery or otherwise. I need a couple of my children w/ me to lift into the carts, to the counter, into bags, the car then into the house. I have never been a big shopper, all the women in my family consider it a sporting event, I'm the black sheep. turn

I have flannel sheets on my bed yr. round. I wear a long T-shirt to bed. My clothes are basically cotton. My mother use to love to dress us in lace. I do not do lace!! I don't like things around my neck, sweaters, shirts, or necklaces. I wear 2 pcs of jewelry, wedding ring and watch, ONLY if I'm going out. I have gotten rashes from very good jewelry, detergents, soaps, shampoos, etc. I have a few special things I can use or wear and I stay in that comfort zone.

I have pillows on my bed, my chairs (Dining room, Living room) & in my car. I don't hear well in my R. ear, always use my left, so I can't talk too long or my left hand goes numb, as does my ear. lol   My hands can only hold a pen for so long, I usually print instead of cursive. My printing is neater for longer than my writing, but my hand locks quickly so all bets are off.  I love to read and now I have to wear my glasses (bifocals) It feels like an extra strain to lean forward, or if in bed, to rest book against my raised knees.

I guess what it comes down to is, if you want me there, I'm coming w/o my bra and I bringing my pillows. It is about me. smilewinkgrin

God bless.  Alice.


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/22/2008 7:51 PM (GMT -7)   
Its so weird that everyone has probs with bras ,  I always thought it was just me and felt guilty not wearing one.  Im a double d  so if I dont wear a bra its not a pretty sight,  but sometimes you just cant.

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 9/22/2008 9:04 PM (GMT -7)   
lace? Ick!!
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