Fibromyalgia Article

[glassd18]

I went to the doctor today because I'm having so many issues outside of IC: bowel cramping, aches, and pains that I can't explain, and he said that I was having body aches and pains because of lack of sleep and gave me Lunesta. Well of course I don't hit deep sleep probably because my bladder is always there ready to wake me up at any given moment. Anyway I thought he was crazy, but I found a very interesting article that gave me hope, and restored my faith somewhat. I hope you find it as interesting as I did. It really explained some things to me. I believe I either have Fibro or I'm aching like crazy from lack of sleep. I have been tested for autoimmune diseases two years ago, had x rays, and also thyroid tests and they were all negative. Sometimes I think I'm losing my noodle. Anyway I hope you enjoy the article:

http://www.geocities.com/cfsdays/fool-doc.htm

[SandyRN]

It really could be fibro. I know I went thru a long period of time when I really thought I was losing my mind. The aches and pains made me feel like a hypochondriac. Then I was finally dx'd with fibro and felt better about things...not that I wanted another dx, but it was good to know what was wrong with me and that there were some treatments out there that could help. I'm going to check out your article now. Thanks for posting!

[glassd18]

Thanks Sandy. Once again I didn't sleep last night so I'm a walking Zombie. I've been playing around with my hormones again too, and I'm flaring like crazy. I can't tell what worked the best, but I'm going to have to figure it out fast because I'm going backwards in progress. Not to mention my friggin cat likes to wake me up at an unGodly hour. Can you say irritable?

[leelee88]

Thanks for the sharing the article. I was just Dx with Fibro and like Sandy said even though it is another Dx I am glad to have a name for it..Because I complained all the time that this or that was hurting.. I do believe getting enough sleep does play a big part in Fibro..

[glassd18]

You are welcome Rhonda. You know my md knows about IC, and I'm surprised that he didn't think of Fibro. He did say that joint pain is connected to not sleeping, but he never said a word about Fibro. You think he would have made the connection. I once again felt very rushed through the appointment, and forgot to mention a couple of things.

[crkshnks79]

I thought my primary doctor was crazy when she suggested I have fibro . I was concentrating so hard on my abdominal pain that for awhile I didnt pay attention to the rest of my body, once I got my diagnosis of IC and PFD I started to notice other things . I have always had problems w stiff and achy neck and back , I just thought it was the way I was sleeping and that I needed new pillows . Then it was in my knees , hips and elbows and I just figured " well Im a hairstylist and Im on my feet all day . Now its my whole body and I cant sleep anymore because I hurt all over and cant get comfortable. When I wake up (the whopping 3 to 5 hours I sleep a night ) my whole body is so stiff and hurts so badly that I literally walk like a 90 yr old !Needless to say I no longer think its my pillows or that my doc is crazy . Im supposed to see a rheumotologist but its taking them months to get back to me to schedule an appt . I also forget things all the time and sometimes just feel like my mind isnt working , which apparently can be related to fibro and even has a nickname , Fibro fog . I dont think your crazy at all !

[glassd18]

I feel for you all suffering with any of these chronic illnesses. :pray: My heart goes out to you. I don't seem to have it as bad as that yet. My pain is in my upper neck and back with ankle, arm, and finger pain. I do have a terrible lower back pain that wraps around my right hip, but they can't figure out what that is. Referred pain from my bladder maybe I'm considering a chiro again when we change insurances August 1. Right now I'm on an HMO, and can't wait to be able to see another doctor for a second opinion without having to have a referral. You can be forgetful with lack of sleep too!!! I have a hard time with concentration when I don't sleep. I feel a little better today. Last night I took a Acephen (acetaminophen-like Tylenol) suppository (I flare when taking them orally), a AZO tab, and 1/2 an Ativan, and I slept a bit better. I was bound and determined to get some sleep last night. I was given Lunesta, but I'm a little worried about these types of meds as I heard you can sleep walk etc...I am on a second floor with a steep staircase and wouldn't want to go headlong down it!!! :bonk:

[BrittanysDance]

Glass

Both my husband and myself have severe fibro (with all 18 trigger points - and then some!) it jumps around, and the latest spots for me is the back of my arms, ugh - they feel so bruised even clothing hurts to brush up against them. :( We've both had fibro for years (before it was "mainstream" in the media and before most doctors believed in it) - about 10 years for hubby with a confirmed diagnosis and about 9 for me. Wasnt fun going from dr to dr back then I assure you... :rolleyes: as we heard so many times "its in your head.." yeah.. okay! Ugh.

I've found over these years many things that help my fibro that are non-medicinal. Weather wreaks havoc on me, doesnt matter if its rain or shine, if the temp or pressure changes, I'll know it before it happens. Cold is a killer as well for me. What helps at all times is a hot bath - even if its a few times a day (if you can). This really helps me about 45 mins before I go to bed just to relax the muscles and myself :) so I can "de-stress" before I go to bed. Everything just relaxes and then I climb into my home-made Tempurpaedic bed. THAT is the key for me and hubby right there - a regular mattress KILLED us as the pressure points just were not relieved. You can make your own Tempurpaedic mattress for less than $500.00, from top to bottom - Keep your old box spring *you'll need that* and the rest is through the following:

Walmart memory foam mattress in Queen size around $240.00; Overstock has a 3-4 inch memory foam Serta mattres stopper for $150.00 *put on top of mattress, added comfort*; and finally Walmart again for a synthetic down mattress topper to put on top of the Memory Foam Overstock topper *less than $50.00, get a king size* and another mattress COVER *not pad* to cover the down topper (they are hard to wash) *less than $40.00* - and there you have it!

I LIVE in mine some days and it feels like I'm in a cloud of air. Look for Promo codes online for Overstock and you will save even more $$. Just get one size up memory foam than your bed and cut it down, the regular size is always about 6 inches shorter for some reason - and then get the same size mattress pads/covers. My deep pocket sheets fit perfectly too! :D

If you can tolerate bananas (some ICers cannot) or Gatorade - try them. For some reason potassium helps (but only natural - dont take supplements please) and I was advised to do so by both my rhumy and my neuro. I can tolerate them both so I try to eat a banana at least twice a week and drink Gatorade the same. If you have high blood pressure - please check with your doctor first on the gatorade though as it is high in sodium. I have very low blood pressure so I need sodium in my diet so I dont pass out (instead of taking meds for the condition I have *not fibro*, I just increase my salt intake slightly).

I'm sure others will chime in on what they do. I do know do not take any caffiene if you can as that will aggrevate and stimulate you. Also - small stretches actually help fibro believe it or not. Yes it will hurt at first, but it does feel much better following. :) I do this over my big Yoga ball, but admittedly there are some days where I cannot do them as it just hurts to touch my skin. I do try though..

Lots of hugs,
Brittany

[glassd18]

Wow Brittany. Thanks for the info. I just bought a brand new king size bed and mattress a year or so ago so a new mattress just isn't in the budget right now. I looked at tempurpedic mattresses when we were looking to buy, but they were pricey. We have a platform bed with a Sealy top of the line no motion mattress, and it feels pretty good. I was thinking that Yoga would be helpful, and/or pilates. Exercise is probably good too to help build seratonin levels. I got some decent sleep in the last couple of days, and I am feeling better so there is definitely something to it. I start to hurt later in the afternoon and evening. The back of my arms feel bruisy when they are sore. It's the strangest thing as these aches and pains come and go, and are never quite in the same place. The aches in my fingers and ankle really bug me. My neck is sore on a constant basis. I'm trying so hard to do relaxation techniques like breathing etc... My jaw is clenched so much of the time when I'm in pain. Thanks again!!!

[PenguinK]

I also have Fibro with my IC. It seems that just when my IC symptoms were under control, the Fibro symptoms which I've had most of my life increased dramatically! I am in pain most days, all day.

I tolerate bananas, so I do eat them (before they get to ripe and acidic) several times a week. This actually seems to help some.

I got a king size Temperpedic mattress topper and then a Memory Loft Bed Topper from Boscov's department store. I was looking for the "Cuddle Ewe" wool toppers that are recommended for fibro when I came across this cheaper alternative.
It combines fibers and temperpedic pieces quilted into squares so they don't bunch up. It is a lovely, comforter-looking bed topper. I could stay in bed for days!!! lol I sleep much better with it.

I've also tried yoga and found it to work as long as you keep it up. I stopped and haven't gotten back into the routine again. I can feel the difference. I need to start again.

Does anyone use massage or reflexology for the fibro symptoms? I'm looking into that and would like some feedback.

thanks,
KK

[Charisse]

I also have Fibro. I am like SandyRN. I was so glad to have a diagnosis because I thought I was going nuts or turning into a hypochondriac. Why else would I have random pain that would change spots and have such terrible days and then okay days? My rheumy prescribed me Ambien and explained the lack of deep sleep that fibro patients fail to get. I don't think anyone is entirely sure why but they know there is a connection. Ambien changed my life. I was able to start very mild exercise (mainly walking) again and all was well for a couple months and then I got hit with IC. I'm still on the Ambien and I'm not sure how I'll ever get off it but I'm okay with the stigma and the idea of needing it forever if it keeps me feeling well. I tried Lunesta too but it didn't work for me and made me dizzy. I've never had any of those weird side effects from Ambien that people talk about like sleep walking or eating . .