Hello everyone: I am just curious, I can feel so exhausted that I want to go back to bed but I do not dare the pain becomes worse. Does that happen to anyone else? Another thing, when I shower it really hurts (don't laugh), my son bought a new shower head, which is gentler, anyone have this also? One more thing, does anyone's ears hurt on the outside? I have told two drs this and they have said it is atononomically impossible but I am with the two, 3lb weights on the pillow beside my head. I have only heard of one other person having this. God this is a dreadful life. It is sheer torture trying to get through the day. Okay, I was just curious, but if it makes you laugh that is good also.

Hi,

I usually fold up for a few hours in the early evening (I can't get up before ten or so, so my day is short). I feel stiff and achey when I wake up, but find I need the sleep anyway.
Never had the shower pain, but the noise from the water drives me mad. I actually find the noise (and many other household noises) painful. And no on the outside ear pain, but I wouldn't be surprised at it, might be referred pain?
Hope you feel better soon,

Seaturtle

Naps are precious. I do try to take one in the afternoon if possible - normally I can't fall asleep though since it takes me 1-2 hours minimum at night to get to sleep. But, I try to make myself "nap" for at least an hour in the afternoons where possible. Just the act of being in pure quiet laying down is relaxing - even if it doesn't end up in sleep.

As far as the showers at times they do hurt but, normally that's only if I've really overdone it. But, the bulk of the time a hot shower is a huge relief to my knotted muscles in the mornings making it to where I can actually move.

Can you take a bath instead of a shower?

I feel like if I couldn't nap or at least lie down quietly fo a while, I would have already died. Seriously. I've never heard of anyone dying from being so tired but it wouldn't surprise me. Some days I have to lie down twice during the day. Yeah, I get up kinda stiff, but, oh, the restfullness I get is almost heaven.
I get the pain sometimes taking a shower. I never associated it with fibro though. It's like 1 spot on my back that I can barely stand to let water touch it, Even if it'd run off from my hair being wet instead of directly from the shower head. I just figured, oh, well, one more thing about me that's weird.
I can't say that the outside of my ears hurrt, but the dr. has no right telling you that it can't hurt, not when it's your body feeling it.
Back to naps, Saturday I laid down about noon, woke up for just maybe a minute about 2 something and slept til 5 something, almost 6. And I still went to bed early and slept throuth the night. That doesn't happen very often, I think maybe I was able to sleep so much because I's been without any decent sleep for several days. I figure naps or at least trying to get some quiet time is very normal for those of us with fibro.
April

The need for naps with Fibro is normal ... I sometimes have to take a couple hours nap 2 times a day ... it does help if you are on a sleeping aid ... my doctor gives me Seroquel ... when I take it I am able to stay up more during the day ... but I also sleep for about 12 hours straight ... when I'm not taking the Seroquel I can stay up for a maximum of 6 hours without napping ... and showers for me are very painful as well ... and I cant stand for anybody to touch me, even the slightest brush of a hand sends shock waves throughout my body but than again the pain in my legs is so deep and constant ... I feel as if the pain is coming from the inside of my bones out ... It is very severe and constant and is terribly disheartening.

i too have a lovely gentle shower head. feels like a spring rain on me. i take little rests. about 5 to 10 minutes several times a day. that way i don't get too stiff. on tired days i do nap. i take pain meds befor laying down so i don't wake up sore.
peace,
bluelakelady

Naps are wonderful, even if I don't sleep just resting can be so nice.

Hi,

I would take naps if my body would let me. I think it is on over drive to get me through the day. You would think that we are all so tired with Fibro that our bodies would normally just fall asleep, it doesn't happen that way.

When it comes to the ear pain, I get very painful earlobes, they burn, hot and are as red as a ripe tomato. This happens once in a while.

Peace and love, Hangin

Hi, everybody. I haven't been on for a while. I had the worst cold. I HAVE to take naps in the day. I might not fall asleep but just laying there with everything quite does me good. I hope all is well with everyone since I have been out of the loop for a while. Take care, Avrod

i usually take 2 naps a day. one after i drop my son off at school in the morning, for about an hour and another one after i pick him up from shool for about an hour. my sleep at night is terrible so i kind of need these naps. sometimes i don't fall asleep but i just rest and that helps to. when i do wake up though i do feel pretty crappy, i get really achy.
the preasure in my shower really bites so i don't have a problem with that. and no ear pain thank goodness. everything else pretty much already hurts already.
take care
robin

I know what you mean when you say you're so tired that you think you're going to die. I have felt that way many times. I take naps when I can, but I also have a hard time falling asleep sometimes no matter how exhausted I feel.

I totally understand about the ear pain. I notice that one of the times I seem to get it pretty bad is when I feel hot and sweat, and then the outside of my ears hurt something terrible during the time my body is cooling down. The pain seems to travel from the outside of my ears inward towards my glands. I would say the pain in the outside of my ears seems to be traveling along that hard cartlidge inside the outer part of my ear.

Take care,

Robin

Sometimes my ear lobes do feel achey. LOL I thought maybe it was the earrings I had in causing it, but sometimes they're not in!

I rest every afternoon for a while. I feel 100% better after I rest. Makes the "hurt" stop for a while.

I have to admit i have to fight taking naps. I average going down for at least 2 hours a day. I feel tired all the time. Then i have problems sleeping at night time. My friends keep telling me to not become a slave to the bed. :nono: ..but i have a hard time going through the day without a nap.

I have always hated naps. To me, it was a complete waste of time. But for the last little while, I realize the importance of taking naps when you suffer from fribo. I even take half an hour on my hour lunch just to nap so I can work the rest of the day.

I don't hurt in the ears but my jaws hurt alot and my neck. I put a heating pad in my chin and it helps.

I am realizing more and more how gentle we have to be to ourselves when we have fibro.

Have some of you had trouble in your relationship with your husband/wife because of this disease!

Hi everybody out there is fibro land. I think it is becoming a problem for my husband. At first when I was going for all these tests(lupus, luekemia, ra) he seemed very supportive, now he doesn't say anything at all. I don't know if it is because I have kind of shut down myself. I just think that he is tired of hearing how tired I am all of the time or how I ache so bad. So I just don't say anything anymore. He is very caring with other people's problems, I just don't know if he wants to admit that there is a problem with me or that he thinks that I am just going crazy. I do see a change in our relationship, but then I think that it is all in my head and I am too scared to talk about my feelings. I am a healer by nature, I always want to help and now that I am in the recieving end I feel quilty. I hope this makes sense.
Sincerely, Avrod

Hi,

When it comes to fibro and relationships I believe that the spouse who isn't ill doesn't know what to do or say. They want to take your pain away and can't..they want the old, healthy person back, that person is different now.

I have had fibro for a long time and my hubby struggled trying to make things better for me and not understanding what to do. He did withdraw and above all, I know I did. When I am in pain, my world is different and it is hard to talk about things let alone do things.

My hubby was diagnosed with Lupus a little over a year ago. It wasn't until then that he understood Chronic pain and the feelings that I must have. It was a drag that this happened to him and it is interesting to live in a house hold where both of you are sick....I should say it is very hard.

Everything changes in your life. For me I had to go on disability, I loved my work. At the moment I am at a place in my head where I have pretty much isolated myself since we moved to a new town and I did not have the strength or will to do much. Meanwhile, even though my hubby is ill, he goes to work everyday. I had terrible guilt over this but that is him and I can only do what I can at the moment. I know there are times he is disappointed when he gets home and I am still in PJ's. He has never said an un-kind word but I can read him easily.

Before on the spur of the moment we would take off and explore this world. Or take a walk every night. I never realized that life is so full of things we do and say with each other that we had taken for granted.

IMO, every family goes through many different changes with fibro. I could write a book about how I feel about it but for me I think the main thing that we miss so much is the physical ability to do so many things we would like to.

It took many years for me to get over my guilt, at times it still rears its ugly head. I just had to realize that I had no control over fibro, had done nothing wrong and this is just the way it is. I had to still love myself even though I could not give as much to the world as before.

I know this might sound corny, but the first time I asked my hubby how he felt about me having fibro he told me to remember the vows we took. In sickness and in health. I knew I had a gem.

Chronic illness is very hard on the person who has it and the family. For me it takes praying, understanding what I can about what is going through my hubby's head. Sometimes, a lot of times, I let him be...that I have learned.

Your life will change and go through many chapters. Just keep the faith.

Take care everyone, hope you all give yourself a hug.

Peace and love, Hangin