Amen Maggie, Amen! I'm not allowed baths with my epilepsy, but most of the time I'm simply so exhausted standing in the shower. People say "Oh, how refreshing that shower was!" & I'm leaning against the wall getting more tired by the minute. I've actually had to call my husband to get me out of the tub/shower a few times because I couldn't stand any longer - that's fatigue! I detest it!
And so true, too, about not checking in every day. Just so tired I don't care about anything. And so tired that my mind can't function to get the right keys on the keyboard - I want to capitalize, so I enter, and vice versa, and pushing wrong letters.
My doctor told me to take Melatonin to help me sleep, but sometimes even it doesn't help. And Yes, my husband & our cat snore terribly. I have to wait a couple of hours before I can go to bed. It is usually after midnight before I get to bed & like you said, it isn't restorative sleep - I wake up every 30 mins., so it really isn't 12 hours of sleep. Along with the Fibro, I have CMP, asthma, arthritis & epilepsy with 10 types of seizures. All of it wakes me up a lot.
I've read more of others comments & can relate to them so well. Oh how I hate shopping - such a painful, exhausting experience. And cleaning, cooking, etc. My husband will vacuum, but I have to manage the rest. If the cats puke, he can't even look at it. I used to feel that others thought I'm lazy, especially my husband, but he's seen how much pain I'm in & how I can only work in short spells, so I'm slowly getting over that feeling of myself.
I have always loved doing puzzle books to keep my mind sharp, but as time is passing, I'm losing that ability (more the epilepsy than anything else I'd say). I hate that, so I'm moving on to reading books - if I don't remember it & read it again, it's all new!
There is a lot to deal with in all of this. I'd just like to know what specialist should we see when we have a combination like I have, with the arthritis, FMS, CMP, etc. I'm tired of being tired & being in pain.
Fatigue is having no energy, feeling like I am strapped down with weights all over my body so that any movement just exhausts me, like I'm constantly being pulled down. I try to stand & smile for others, or do what others do, but I just don't have the energy. I'm totally sapped. The weird thing is, I can go to bed & you would think I would fall asleep immediately, but I don't. Pain perhaps. There is tired & there is fatigue. Fatigue goes beyond tired, so far that it is hard to sleep sometimes. And once I do get to sleep, I find myself sleeping 12 hours or more. It is a monster that consumes my days & nights.
I too have gone without a bra sometimes. And sometimes I will go around the house with a very loose nightgown because clothing hurts my skin. Burns my skin would be a more accurate description. I have many days when waistbands from underwear or pants, my bra, or even sleeves will cause such a burning sensation. Or being touched. As far as a comfortable bra, I buy a cheapy from WalMart - Vassarette style 70-177. It is soft & stretchy. Probably not a good bra since it is not a support bra, but it comes pretty close to a natural feel. It isn't padded, no wire supports, nothing fancy or uncomfortable. I will probably get a lot of replies about this being a bad bra, but it is one I can wear most comfortably.
I have been treated off & on for a number of years for asthma. Now I've just been told that I have a muscle disease associated with my lungs. I have FMS, CFIDS, & MPS, along with a multitude of other health issues. My family doc said she doesn't know anything about the lung muscle disease & I will be seeing a pulmonologist in January. But I was wondering if FMS or CFIDS could affect the lungs in a way similar to asthma. Any ideas?
Hi All. This is my 4th attempt to post this. For some reason, when I get most of the way thru my post, an icon appears on the bottom saying there is an error & it won't let me post. So here goes again.
I'm 46, married 27 years, one son - 25. I've posted on other discussions - bi-polar, PTSD, epilepsy, back pain, etc. I have a lot to deal with.
As a teenager, my dr. thought I had JRA, but ended up not having it. I've always had a high pain tolerance. When in labor with my son, I barely felt any contractions. Then things changed - either my pain tolerance lowered or my pain level intensified.
When my son was 1, my feet slipped out from under me while I was carrying him down concrete steps. I went to a chiro, had xrays, was told I'd compressed my lower back, had some adjustments & was released. A couple of years later, I would be walking/swimming & my back & hips locked up, I couldn't move for several minutes - very painful. I didn't think about my fall.
A couple years later, seeing a new dr., being treated for depression & pain. One day, my dr had just returned from a seminar about FMS & other muscular diseases. He quickly diagnosed me with FMS & was confirmed by 3 rheumatologists. Later he added the diagnoses of MPS and CFS (now CFIDS), explaining the differences. I didn't respond to medication. He moved & I started seeing a new dr.
My dr. sent me to PT. At first it helped, but then the pain increased. I demanded tests. Xrays & MRIs were done of my hips & I was told I have "sloppy hips" - easily put out of joint. PT didn't help, so I quit. The back pain & muscle pain got worse. I demanded a xray of my back, was told I have arthritis, bulging disc & bone spurs, but not given any treatment - "deal with it." My dr. then sent me to a pain clinic in conjunction with PT. The paing clinic gave me shots, then I went directly to PT. The therapists were stunned - everywhere I received a shot, I had a huge knot & they couldn't work it out. Turns out the shots had lidocaine - I'm allergic to it. The pain increased with the shots/PT, so I quit.
I've seen my dr. several times when the FMS has been severe - severe pain at any touch, skin feeling like it was being burned when touched, etc. She has tried every med & shot possible with no help. Just over a week ago, I saw her again. I pointed out that I know some of the pain is FMS, some from the back injury, but I think there is something more here. But she just focused on the FMS & gave me savella. I can't say I've seen any improvement yet.
FMS is a muscle disease. But I am having severe pain in all my joints. Wouldn't that be caused by something else? How do I get my dr. to look into something else?
I try to stay active. I'm up & down all the time because when I get up to do something, I can only be on my feet for a few minutes & then have to sit down. I have a few hobbies & my cats to try to focus on other things. I've done everything I can think of to deal with this. Am I dealing with more than the muscle diseases & back injury?