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RE: Anybody out there with fibromyalgia? - 5/1/2009 11:20:51 PM
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cherish405
Posts: 8574
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From: The Land Down Under
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Thanks. It's nice to know that there are people out there who understand.
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Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/4/2009 2:10:05 AM
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4IMPersuaded
Posts: 63
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From: Lone Star State
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It is, isn't it?
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RE: Anybody out there with fibromyalgia? - 5/4/2009 10:17:21 AM
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cherish405
Posts: 8574
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Sure is.
What do you all do for pain relief, other than using meds? There are times when I feel like I just can't take any more pain. (No, I'm not about to do anything stupid). I use the pain meds that I'm allowed, and still can be in a lot of pain. My rheumatologist suggested that I could use a patch that cancer patients sometimes use. It is morphine based. I've heard how easy it is to get addicted to that, and that's the last thing I want. Have you all got any suggestions?
Persuaded, the vast majority of the time, the pain is caused by movement. If I go shopping, or have to go out for anything, usually the next 3 days or so, my body is paying for it in pain.
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/5/2009 1:52:43 PM
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4IMPersuaded
Posts: 63
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From: Lone Star State
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You know, Trish... I think the pain from movement might be related to your RA... Movement is almost a religion for me now-- although, having said that, I'm having a hard time getting going today.
Chronic pain is such a trick. There is hopefully a happy medium between debilitating pain and over-medication. They are probably talking about a fentanyl patch. It works for a lot of patients-- in Cancer, we don't care about "addiction." The addiction you are worried about is actually becoming physically dependent on the medication-- it is the dependence that causes the withdrawal symptoms when you stop taking it. True addiction is when you take measures to get the medication even when you don't need it-- no pain and still taking the medication to get the "high." It isn't the same thing as dependence. But like I say, we don't care about that in cancer treatment-- especially when we are doing end-of-life care. Who cares if the pt. is addicted if they have quality of life for a little longer?
For you, though, it is a tough call. You have to get a handle on the symptoms, though. I am managing without meds right now, but if I couldn't get out and do the things that I wanted to do, I think I would seriously consider whatever I needed to do to get out in front of it. Once you get ahead of it, you can wean down to where you can live your life and have a manageable level of pain. Like I say... it's tricky.
You are in my prayers!
Christi
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RE: Anybody out there with fibromyalgia? - 5/5/2009 6:01:59 PM
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Gail7364
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I started going to a Chiropractor due to injuries suffered in a car accident and he has helped me so much with my Fibromyalgia. He works on the pressure points, and while it hurts when I am there, I come home and lay on my ice pack for a while and I feel so much better.
Now, if anyone could do something about the chronic fatigue. I hate the days that I don't have enough energy to change clothes. You know, those days that you sleep no matter where you are!
I don't think they have a pill for that!
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RE: Anybody out there with fibromyalgia? - 5/5/2009 7:48:29 PM
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cherish405
Posts: 8574
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From: The Land Down Under
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Thanks Christi.
Gail, I've never been to a chiropractor before. Don't have insurance. I don't like people touching me at the best of times, but the thought of a chiropractor working on me, frankly freaks me out! I don't mind hugs when they don't cause me pain, but to have somebody poking and prodding at my more than ample body?
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/5/2009 8:41:43 PM
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4IMPersuaded
Posts: 63
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From: Lone Star State
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I'm with Gail on chiropractors! I haven't needed one in a while,but about 10 years ago, I couldn't bear to be upright-- had to crawl to the bathroom! I can walk again b/c of Dr. Howard! Gotta get a reputable one, though. Some of them are shady, so you'll want a referral.
I wasn't excited about going to one when I first hurt myself. When he would adjust my neck, I couldn't help but cry out-- from fear, not pain. It turned out fine and I could walk again! PTL! It was a long road back and required a change in job position, but I'm certainly in "remission" from the back injury. I still have to be careful when I vacuum-- sometimes I just ask my husband to do it. I also don't mow the yard anymore... I do credit the chiropractor with the rehab, though. I tried PT, but that didn't help nearly as much!
It might be worth at try!
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RE: Anybody out there with fibromyalgia? - 5/7/2009 8:58:41 PM
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cherish405
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From: The Land Down Under
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I posted this in somebody else's thread, but I just wondered if any of you have ever been this bad, or have any suggestions as to what to do.
When I first was diagnosed, the rheumatologist told me to exercise daily, even if that meant that I just go to the mailbox each day. At that stage, I was a lot more active, and going to the gym. I never thought for a minute that actually getting to the mailbox would be an accomplishment for me. Any exercise that doesn't hurt me. These days, it literally hurts just to sit down or stand up. My body literally gets the shakes when I try to stand up. I've become like an old woman. Some days I'm really stifling screams because I can't get my legs to lift up into the car so that I can sit down. Those days I have to literally lift my legs into the car, and it ain't pretty.  
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/8/2009 11:00:20 AM
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4IMPersuaded
Posts: 63
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From: Lone Star State
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The only time I've been that bad was during the acute phase of a flare-up of my lower back injury. At that point, I feel like my body has completely betrayed me! I can't control what I can do and what I can't. I couldn't even watch the winter Olympics one year because when the skaters would jump, I would tense and be sent into horribly painful spasms! How ridiculous!
Trish, have you been in the pool? It sounds like water therapy might help a lot. I know, I know, the bathing suit thing. Trust me, no one who matters cares. DH won't go to the pool b/c of his weight. It breaks my heart because it would do him so much good (he loves to be in the water), but he's allowed anonymous people to rob him of something he loves that would actually make a difference in his health. I'm hoping that when we sell our house and can buy in this area, we can find a house with a pool in our price range just for him.
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RE: Anybody out there with fibromyalgia? - 5/8/2009 11:21:20 AM
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Adrenalinejunkie
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It did get about that bad for me. The pain is probably worst in my feet so it got to where I could barely walk. It can still get that bad if I do too much and/or it's raining. But I have a high pain tolerance, so I can still get through the day. For the most part anyway.
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RE: Anybody out there with fibromyalgia? - 5/9/2009 11:13:36 AM
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cherish405
Posts: 8574
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From: The Land Down Under
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Yeah, I've spent some time in the pool. The lady I live with has knee problems, so her physio suggested some time walking laps in the pool. I went with her to keep her company. I haven't been for a while as I felt like I was freezing, even in the heated pool.
I also find dressing and undressing really painful. Wet clothes are heavier than dry. Bending knees etc isn't good.
Have any of you ever had times when even wearing clothes hurts? I do, but don't worry, I don't go around naked or anything. I'm still clothed, just have to be careful what I wear so as not to cause too much pain.
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/9/2009 4:59:33 PM
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4IMPersuaded
Posts: 63
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From: Lone Star State
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quote:
don't worry, I don't go around naked or anything.
Whew! You had me worried there for a minute!
No, sorry... I haven't been that bad-- just with the back injury, getting dressed was a trick, but it didn't hurt to have them on.
I'll keep you in my prayers, Trish. I hate to hear what you have to go through each day. God bless you, sister.
_____________________________
~Christi
"And now its time for a break. I'm going to hold this ice to my head... You do whatever you want."-- Caroline
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RE: Anybody out there with fibromyalgia? - 5/9/2009 7:46:21 PM
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cherish405
Posts: 8574
Joined: 4/11/2005
From: The Land Down Under
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Thanks Christi.
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/11/2009 10:17:14 AM
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caringnurse
Posts: 21
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I don't have fibrmilagia but I do have osteoarthritis which is in the same family of diseases. It is totally different. I am writing because I have lived with the pain for over 15 years. My knees always hurt. I have had both reploaced. The first one has to be redone. My left one is 5 weeks old so I still have surgial pain. I am so tiured of pain and get depressed very easly. Pain pills don't work very well on me and the Dr are always afraid to give me enough. I am looking for other arthrithic suffers to share with. I feel very alone today. I have PT at ll:00 today and dread it. I admire you ladys with fibrmiliaga. Thank you for reading this I had to quit my profession because of the pain. That has been very painful also. Gods love to you
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NAR
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RE: Anybody out there with fibromyalgia? - 5/11/2009 3:13:58 PM
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4IMPersuaded
Posts: 63
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From: Lone Star State
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quote:
ORIGINAL: caringnurse
I don't have fibrmilagia but I do have osteoarthritis which is in the same family of diseases. It is totally different. I am writing because I have lived with the pain for over 15 years. My knees always hurt. I have had both reploaced. The first one has to be redone. My left one is 5 weeks old so I still have surgial pain. I am so tiured of pain and get depressed very easly. Pain pills don't work very well on me and the Dr are always afraid to give me enough. I am looking for other arthrithic suffers to share with. I feel very alone today. I have PT at ll:00 today and dread it. I admire you ladys with fibrmiliaga. Thank you for reading this I had to quit my profession because of the pain. That has been very painful also. Gods love to you
Hi sister! I'm so sorry that you are hurting-- both physically and emotionally. What area of nursing did you leave?
_____________________________
~Christi
"And now its time for a break. I'm going to hold this ice to my head... You do whatever you want."-- Caroline
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RE: Anybody out there with fibromyalgia? - 5/11/2009 9:18:57 PM
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caringnurse
Posts: 21
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II worked in geriatrics nursing for 38 years. I did every job there is. If some one asked me to tell me about myself the first thing I said was a nurse. That has always been my identy. I am going to school on line. I had both knees reploaced bu8t the first one did not do anything to the knecap and it is shot so as soon as this knee heal I have to to that one oover. MORE pain.
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NAR
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RE: Anybody out there with fibromyalgia? - 5/12/2009 3:58:33 AM
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cherish405
Posts: 8574
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From: The Land Down Under
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I'm sorry to hear about your pain, and that you had to give up your job.
I haven't had arthritis in my knees the same as you, but I live with somebody who has had knee surgeries. One specialist removed a patella, and that has made life a nightmare!
I imagine everybody knows about taking glucosamine. I have to take vegetarian glucosamine as I'm allergic to fish.
Does anybody here with fibromyalgia have swelling in their hands and pain in the joints and knuckles of their hands? I've had the swelling for a few weeks now. The pain in my knuckles just in recent days.
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/12/2009 9:47:31 AM
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4IMPersuaded
Posts: 63
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From: Lone Star State
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quote:
ORIGINAL: cherish405
Does anybody here with fibromyalgia have swelling in their hands and pain in the joints and knuckles of their hands? I've had the swelling for a few weeks now. The pain in my knuckles just in recent days.
Actually, I would bet money that your hand and knuckle pain is more related to RA. That sounds classic. My pain is most often in my upper back/shoulders and my hips. I carry my stress in my shoulders. Some days I can't even bear my children cozy-ing up to me on the couch b/c their knees end up hitting me in the hip. they don't usually hurt unless they are kneed or elbowed. My lower back hurts most often b/c of stupid things I did as a young nurse.
quote:
ORIGINAL: caringnurse
If some one asked me to tell me about myself the first thing I said was a nurse. That has always been my identy
Oh, I hear you, there. I have felt God leading me away from nursing in the last couple of years and toward another focus. Very strange to contemplate b/c nursing is part of your DNA! You are still you-- even without your job. Good for you for getting online. I did that for a while, but I realized that it wasn't what God had in mind for me. I really enjoyed it, though.
_____________________________
~Christi
"And now its time for a break. I'm going to hold this ice to my head... You do whatever you want."-- Caroline
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RE: Anybody out there with fibromyalgia? - 5/12/2009 9:43:23 PM
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cherish405
Posts: 8574
Joined: 4/11/2005
From: The Land Down Under
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I guess the pain and swelling in my feet, and the joint and knuckle pain in them is something to talk to my doctor about then. Oh joy. 
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/13/2009 8:28:09 PM
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cherish405
Posts: 8574
Joined: 4/11/2005
From: The Land Down Under
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My doctor doesn't manage the fibromyalgia pain. When I was seeing a rheumatologist, she told him what she had prescribed for me, and he just continues it. When I first tried to get a diagnosis for fibromyalgia, he said it could be possible, but didn't know who to send me to. I had to go to a general physician, so I asked him. He doesn't believe in fibromyalgia. I had to find out for myself who to get sent to and a rheumatologist to go to. I've stopped seeing the rheumatologist now as there's nothing more she can do for me. She'd told me about the morphine patch that I could use, but my doctor doesn't want me to use it as it is so addictive.
Here, they don't use the pain scale unless you're in hospital, or being spoken to by an ambulance person.
My pain levels sure aren't under 4 and that's with tramol. I think he's scared that I'll get addicted to painkillers if I have any more. He wasn't happy about me being put onto tramol in the first place.
Thankfully one thing I don't have to worry about is a monthly cycle. I had to have a lap hyst when I was 30 as the year before they had to remove over 50lbs of borderline malignant ovarian cysts, and then shortly afterwards found more growing. We thought it best to stop any more growing.
Like you, sleep is a real issue for me, as are a lot of other things that fibromyalgia sufferers have to put up with.
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/13/2009 11:50:01 PM
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4IMPersuaded
Posts: 63
Joined: 11/17/2007
From: Lone Star State
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I'm not a doctor and I don't play one on T.V. (a little American humor), but it sounds to me like this fellow is not trained in chronic pain management. We have Pain Clinics at most major hospitals here. There is no "magic pill" but there should be some way to try to control your pain in some way to break this cycle for you.
I've seen many doctors and nurses alike grow tired of a patient's complaints of chronic pain. Many of them have not experienced pain for longer than a 24 hour period. Many just assume that the individual is seeking drugs. Our standard really is "Pain is what the patient says it is, occurring whenever the patient says it does." It is really based on the work of Elizabeth Kubler Ross (a Brit). Anyway... I'm sure that this attitude is partly based in a feeling of helplessness when they can't treat the root cause. Surely there is someone near you who is versed in the care of people suffering from chronic pain. Because of your RA, I would think that they would want to get ahead of any possible joint malformation to try to curb or at least hold it off. I don't have any idea what you'd have to do to switch providers... People doctor-shop in this country all the time. You might even have some luck getting into a study if you live near a university with a medical school. I don't know... I'm just thinking out loud... You have probably already tried these...
Bless your heart. Hang in there sister! I'll be around to root for ya'!
_____________________________
~Christi
"And now its time for a break. I'm going to hold this ice to my head... You do whatever you want."-- Caroline
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RE: Anybody out there with fibromyalgia? - 5/15/2009 8:05:29 PM
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Pamsy
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From: WI
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I have a friend who has FM. THere are certain excersizes that actually help it, while just any old excersize will not but may make it worse. She goes to therapy for FM which they do those excersizes.
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Matthew 11:28-30 "Come to me, all you who are weary and burdened, and I will give you rest... my yoke is easy, and my burden is light."
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RE: Anybody out there with fibromyalgia? - 5/15/2009 8:13:44 PM
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cherish405
Posts: 8574
Joined: 4/11/2005
From: The Land Down Under
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Last year I was going to a gym and exercising. Not normal exercises, but a programme set up by a rehabilitation physiologist. Then our car died and we couldn't get back there. We've just recently got another car. I saw the physiologist last week. I'm nowhere near where I was the last time I saw her. Not in fitness, which I expected, but I was a lot more mobile then and experienced far less pain. Nowadays I sometimes scream just trying to lift my legs into a car so I can get in. The pain levels are far higher than they were when I used to go. I don't think I could handle a programme if she gave me one. I could try a short go on the stationary bike, but I'd just about be spent by the time I got on the bike let alone pedalled it.
_____________________________
Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 5/17/2009 9:33:40 PM
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Adrenalinejunkie
Posts: 620
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From: Tennessee -- America at it's best
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My aunt who has fibromyalgia came down for the weekend and from what she said, it gets a lot worse with age.
Is this true? I'm only a teenager and I can't really imagine it getting worse than this.
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