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Old 07-08-2011, 01:02 PM   #1
katrina1122
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Fibromyalgia anyone?

I was given a dx back in 2000, but I've had it my whole life as far as i'm concerned.

Some days are good, some are bad. I definetly go through cycles.

Who else deals with this hidden nightmare?
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Old 07-08-2011, 01:59 PM   #2
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I also have fibromyalgia and have had it for 15 years. I am on disability because of it. At the beginning it was pure you know what cause I was working at a hospital in HSKPG lifting alot of heavy stuff which is not good for your body and joints. I will tell you if it weren't for the chiropractor , I would not been able to move at all must less walk. I would have to walk at night for hours cause I could not sleep and be in such pain. After the hospital got rid of me it took years for my body to calm down for me to function somewhat normal. If I do any physical work it leaves me in alot of pain so I have to pace myself. I can get stuff done but I have to do it at my pace which is slow, but who cares at least I get it done. Always listen to your body, if you feel tired then rest, don't ever push yourself cause if you do your body will turn on you and its not pleasant. Get rest and avoid stress that is a big no, no and will cause you to go backwards. Its a never ending job really just trying to survive with this condition because of the way life is. Also say your prayers cause that really helped me especially when it made my anxiety and panic disorder worse. So good luck.
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Old 07-08-2011, 05:08 PM   #3
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Sadly, I can relate. I have Fibro mixed with Sjogren's, and it knocks me completely out.

Weather changes seem to be a big thing for me. Extreme changes in temperatures really make it much worse. I have tried many medications, and nothing really helps.

Do you have a good Rheumy? Mine is so compassionate and caring. When I see him (which is often), he totally gets it, and I find so many people and/or Dr's don't. When the disability is hidden to the eye, it is hard for others to understand exactly what you are going through, and what you feel.

I have been on LTD for 2 and 1/2 years. Some related to these diseases, but more for my brain surgeries. I am hoping to go back sometimes soon, but it seems more things are cropping up.

Feel free to vent away. There is also a thread on the Disabilities forum on the DIS, but I have never joined in there.

Giving you painfree hugs and thoughts
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Old 07-12-2011, 08:36 AM   #4
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Thankfully I haven't had to go the disabilty route, but i was out of sick leave by april for this year and have used vacation, it always happens this way.

Fibro is no fun. You are so right you can't push yourself, even on those days you do feel good, because you might just regret it the next day.

I had a full ankle reconstruction in Sept of '09, wow did that throw me into a sprial. I couldn't bear any weight on that foot for 10 weeks so I had to climb up the stairs on my hands and knees. A year into recovery I was still in pain and limping which was causing fibro flares to be worse than normal so I had surgery 2 to remove 2 of the 4 screws put in. I still have pain and have found out I have new tendonitis there and surgery to fix this problem would make the first one feel like a cake walk according to the surgeon, I can't even imagine. I was out of work for almost 6 months for that one! So I did extensive pt, but that's over now and back on my own.

Using a recumbant elliptical has been a godsend. It's non jarring our tender joints, you are seated rather than standing wich is always good for fibro and it has petals that cover the whole foot unlike a bike which just covers the arch so no foot cramping. I just have to get to the gym which isn't an easy task when I'm already hurting. My motivation is NO SCOOTER to see the mouse when we go 12/2012 though. But then, if my fm says scooter, scooter it is.

How you handle your WDW touring?
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WDW 1999 Best Western, just went to DTD WDW Jan 2004 Pop Century & Animal Kingdom LodgeWDW Feb 2008 Pop Century WDW Nov 2012 POFQ F&WF, MNSSHP & MVMCP!
March 2013 POFQ/AKL Kidani & RCCL Freedom of the Seas Nov 2013 Queen Mary & Disneyland
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Old 07-12-2011, 07:07 PM   #5
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That's absolutely devastating. My mom has been dealing with it for a few years, much longer than we realize I'm sure, but was just diagnosed with it recently. She's been on tylenol 3's for a few years now to try to manage the symptoms. You guys have it rough, and really feel bad. You're a tough bunch.
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Old 07-12-2011, 09:15 PM   #6
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I have fibro and many other issues. I just recently won my disability case. I have a wonderful rheumy. I started working at 16 yrs old and just assumed I would be working forever, ha! was I wrong. I'm 54 but have not work in 6 yrs.

I also have major back and neck issues going on 18 yrs. After a year of epidural injections, I decided to see a neurosurgeon. So many tell me not to let any one mess with my neck or back but I need some of my life back!
I can not stand or walk more than 10-15 minutes without horrible pain.

I told my rheumy that I was in a horrible car accident many yrs ago, I told her I wonder if that is why my back and neck is so screwed up now.
Funny thing, she said that most of her fibro patients were in a car wreck at some time in their life. She said she hears that a lot.
I wish I could tell fibro what days are okay to show up and what days to leave me alone.
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Old 08-10-2011, 10:04 PM   #7
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I have had fibro for about 25 yrs. but officially for 15 yrs. It is not considered a disability here in Ont as far as I know. Some days it is hard to walk so going to the store and having to park far away is really hard. I have a hard time walking and cannot stand for any length of time. I have to have an afternoon sleep or I cannot function. I don't work outside the house but look after my 3 youngest dgrdkids. They are 1, 3 and 5. My two son's help me when I look after them. At least one of them are around each day that they are here. It is really hard and I am exhausted when they leave but they give me so much love and tell me all day. The 1 yr old and I go for a nap in the afternoon and one of my son's look after the other 2. I just wish that others would realize how hard things are. I have been in an accident. I have bone loss in my neck and a couple of spots in my spine.
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Old 09-15-2011, 11:43 PM   #8
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Same here.

I have kept busy and active, so alot of the pain is now very doable.
I also have down days, thank goodness DH and boss understand when I say Ive crashed. As a LMT,I work at a massage school teaching advanced techniques and all the students and teachers know and understand when I decline a 1 hr massage.
A few months ago I found some herbal help ... Arnica! What a life saver for me. It's helped my fibro and my back

My heart goes out to everyone with fibro

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