what do i do?? (advice please!)
#285059 - 10/03/06 01:14 PM
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chely24
Reged: 02/22/06
Posts: 313
Loc: ohio
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These last 2 days have been so bad for me.. First I go to see a new primary care dr cause my old one left..and he acted like he didnt know what he was doing..he left me sitting in a cold room (my fingernails were even turning blue) i was freezing!.. he said be right back and came back almost 30 mins later .. he said "i forgot u were in here sorry" ..he was seeing another patient!.. so then i start telling him how the amitriptyline helps sometimes for my pain (what they think is fibro)..and he gave me flexeril to take twice daily on top of that with the amitriptyline (25 mg), im already a walking zombie, i sleep sooo much, i have major dark circles, im pale all the time, i feel drugged up.. so when i said "so do i have fibro?" he said "i dont know, come back in 2 months" (this has been going on for 10 months now).. so another dr comes in and says "your weight is a big part of it" so i told her 'how do u expect me to lose weight when you have me drugged up all the time, i have no energy, i sleep all day, i have no appetite or anything" and she goes "well i really think you have fibro".. soo i asked my dr after she left..if i should see a rheumatologist and he says no, wait 2 months.. so today i call anyways to see if i need a referral and they said yeah..so my sister calls back and keeps complaining til the secretary gives in and makes me an appt for a specialist..then she goes "her weight is making it worse, all we can do is give her pain pills and send her on her way..it never goes away" so my sis went off on her and said the same thing about how can i lose weight if i dont have energy to move.. so when she hung up, i started crying, i already feel huge as it is, im in too much pain to move sometimes .. i stay in bed almost all day.. i feel like the fatigue is taking over my life.. everytime i see a dr they blame my weight..that makes me feel soo low .. does anyone have any advice or opinions on what i can do?? any light exercises or anything? im tired of them blaming my weight for it all, yet they keep drugging me up..
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http://www.myspace.com/rachelle423
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Forget the weight. Those people who are trying to tell you to lose know nothing about what's going on with you inside. They don't understand the fatigue of fibro, the pain, the achiness and most of all the feeling of isolation that comes from suffering without help from your doctors and others who don't know about the disease!!!
[deep breath, nelly]
Sorry.  This is a pet peeve of mine, people giving stupid advice because they can't think of anything intelligent to say. Doctors look at people and think "What's wrong with them? How can I fix it??" When they can't fix what's wrong, nthey invent something else to get you worried about to distract you from the problem.
For me, it was IBS. Well they can't "fix" that, so they were like, "Oh you must be depressed. Here, take drugs" and they fling a bunch of stuff at me that DIDN'T work and had awful side effects. And all the while my IBS was like Hello, I'm still here!, but by this time, I'm all tired, bloated and zombified with the mental capabilities of a fern.
Stoopid doctors.
Please take hope that we've been where you're at. The trickt to fibro is that you don't get *well* exactly, but you *do* get to the point where you can manage it better. Which means you have more good days than bad.
We fibromites have to control the pain, get tons of restorative sleep, get the IBS under control, and get the vitamins and nutrients we need. If your general doctor can't handle a fibro patient, there's fibro clinics with wonderful doctors out there who will listen to you and work with you to get you better...
{{{{{{{HUGS}}}}}}}}
~nelly~ 
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Sorry you're going through such a rough time! I would definitely not accept a diagnosis of fibro without first seeing a rheumatologist to rule out other disorders. When you do see the rheumy, see if your sister can go along -- it sounds like she's a pretty strong advocate for you and if you're feeling ill and weak, you might need someone to fight for you.
I was on Elavil at one point, too, and it also made me a zombie -- I could fall asleep at the drop of a hat, which is sort of bad when you have to drive an hour to work every day. It wasn't really doing anything for my pain, so I quit taking it. If you think this is causing you to sleep all the time, you might want to weight the benefits versus the side effects.
I've also taken Flexeril and it completely knocks me out even when I'm not taking anything else. If you do decide to start taking it, I'd start out taking only one, and take it before you go to bed each night.
Good luck -- I hope the specialist can help you more.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Oh sweetie, I agree, you don't deserve this. Doctors can be so maddening sometimes. I've been running in the same circles for over a year now-you are just depressed, you need to lose weight, you need to exercise, blah, blah, blah. But, like you, I'm so damned tired and hurt so much I can barely get dressed. Like you, they drug me to no end, give me high doses of steroids which cause major weight gain and round and round we go.
Its all I can do to make it to the office each day, forget about actually working-nothing is getting done. I'm so exhausted when I get home, I sit in my chair until I go to bed at 9pm. Some nights, I have no idea how I make the 30 minute drive home with my hands so swollen and being so tired I can't see straight.
You have a medical condition, do not feel guilty, do not let the docs make you feel bad You are not that fat!!!!!! The average girl is a size 10, I'm running a 12-14 right now, so I understand being heavy makes us feel bad about ourselves but even if we lose 30 pounds, its not going to solve all our problems.
Some exercise may help but I understand how hard it is when you can barely get out of bed. If you have insurance, maybe ask for a prescription for physical therapy. That would get you out of the house and at least they could show you some stretches and mild exercises to get things started. Try to find someplace with a pool as pool therapy is just awesome. Don't even worry about wearing a bathing suit in public, its a bunch of old people anyway!  
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Taking it one day at a time.....
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I'm on mood stabilizer, antidepressant, antipsychotic (magnifies effect of AD), another happy drug, and a drug to help me sleep at night. Doesn't change the fact that I'm exhausted all day. It's so hard to get things done, let alone tend to 2 energetic kids (3 and 5). Some days, it takes all I have to dress, feed and care for them. My weight is up too and I hate it. I have been skinny all my life up until 2 years ago and it's driving me crazy!
My Doc simply said you have to cut back on food and exercise more! HA! I joined Weight watchers last year, starved myself, exercised at least 1/2 hour a day PLUS weights, and I didn't lose a single ounce. It's the meds. They SUCK!!!!
Have you ever been to flylady.com? She has helped me immensely. It's all about baby steps and 15 minute intervals. When you're exhausted, it really does help to force yourself to get dressed to your makeup and shoes. She also encourages you to do household tasks in SMALL intervals - no more than 15 minutes. Sometimes, I even go with 5. You know like when the kitchen counters are covered with dirty dishes, and the dishwasher is full of clean ones and you say "sheesh!" Well, I say OK, 5 minutes and I'm walking out of here whether it's done or not. The next hour I do the same. At least then you feel like you're accomplishing something.
Hugs!
A.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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You poor thing!
#285177 - 10/04/06 09:12 AM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I know about fatigue too! I'm anemic as well as everything else. I battle it with iron and a B6 complex vitamin. It helps, really. There are also other things the hfs recommended, but I can't afford.
You are right though, they keep you drugged so you can't do anything, and that's not right! And why is it that every dr. blames weight! I was overweight after university. Everything was weight related - now I'm down almost 60 lbs and I still have problems with my feet and joints, you can't tell me that it is still weight related!!
I don't know what else to tell you! ((((((((((((HUGS)))))))))))))
Cassandra
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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I second this!!
#285178 - 10/04/06 09:19 AM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Quote:
Try to find someplace with a pool as pool therapy is just awesome. Don't even worry about wearing a bathing suit in public, its a bunch of old people anyway!
Here Here!! Aqua fitness, even water walking is awesome for fibro, arthritis and general health, especially during recovery! I miss the pool!! I started going in university to lose weight, then I went as rehab after both my shoulder surgeries, and I was just going for the health of it up until March when the dr. made me stop because my ibs and feet were so bad.
Cassandra
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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I would take your doctors' comments about your weight causing your problems with a grain of salt. I'm twice your age and I'm carrying a lot of extra weight and have been for over 20 years. I'm certainly not claiming it's healthy and I'm sure I'd feel better without it, but it's never made me sick. It's never caused joint pains or excessive fatigue and it's never limited my ability to do whatever I want (except slide into slinky dresses). Plus, if your doctors are truly convinced your weight is a serious problem for you, they should be referring you to a weight loss specialist, probably either an endocrinologist or a bariatric specialist. It is absolutely unhelpful for doctors to simply tell patients they're overweight and expect results. Do they think we somehow haven't noticed the extra pounds?
As for Elavil, if you need it, you need it, but in fairness to yourself you should be aware (and your doctors should be telling you) that being on Elavil may make it harder to lose weight. When I was on it, not only did it make me a zombie, it also gave me a terrible sweet tooth. And I'm not talking "gee, I'd like a cupcake" sweet tooth - I'm talking "kill to get sugar" sweet tooth. It wasn't until after I'd gone off it that I learned the "Elavil sweet tooth" is classic - apparently Elavil somehow impacts the "hunger center" of the brain.
I agree with the other posters. Don't accept a diagnosis of fibro without seeing a rheumatologist. A good doctor should be able to work with you to find meds that will help your symptoms without destroying your quality of life.
As for exercise, water exercises are supposed to be wonderful but if that doesn't appeal to you check your local YMCA/YWCA for other gentle exercise classes. The ones in my area offer them. They might be called "low impact" or "stretching".
If you don't want to do a class, there are (or used to be) exercise videos aimed at those of us who are sedentary and overweight. You can also check out this video: web page. Qigong is sort of Tai Chi without the flow. These exercises are gentle and reputed to help with stress as well as just get you moving a little.
There are a million weight loss diets, strategies, and programs out there, but if I were going to seriously address my weight, I'd give Overeaters Anonymous a try.
HTH.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I'd keep looking for a doc who will take you seriously. There's got to be someone out there who can help you.
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If you're not dead, you've still got time.
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thank you to everyone who replied to me, i really appreciate it!! to those of you who know about the elavil (amitriptyline)..ive been noticing my heart beats funny, like fluttery and fast since ive been on it..ive also been waking myself up by grinding my teeth and ive never done that before the pill..i really really hate it.. has anyone ever had this reaction and if so, is it normal??
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http://www.myspace.com/rachelle423
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So often it seems that when the docs can't figure out what to do, they just blame the patient. Then when they prescribe something, they don't consider the total picture. Elavil is a major fat pill. Flexeril really zonks you and is iffy on pain control. What I found that works well is vicodin, but it is a narcotic pain reliever and many docs are reluctant to prescribe it. It's biggest side effect is constipation, but with your diarrhea that would be a plus. I had a great doc who first prescribed it for my joint and muscle pain. She said she would rather I function on a narcotic pain reliever than lie in bed all day. She wasn't big on giving a definitive diagnosis. Maybe fibro, maybe polymyositis. Felt it was more important to treat the symptoms (after I didn't test positive for any major rheumatic diseases). She did osteopathic manipulation and also listened to me and was very supportive. She gave up her private practice and went back to teaching at med school. I hope she is training other docs to be as kind and caring as she is. I'm not having much luck finding a caring, competent primary doc currently.
There are so many good posts here. I love Flylady. It is so important to feel like we are accomplishing something each day, even if it is in tiny increments. I ditto taking your sister with you on appointments. She sounds like a great patient advocate and very kind, caring sis.
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Chely--Are the medications relieving your pain? If not, you really need to find a doctor who will pay attention to the side effects. I am having my own problems finding a primary doctor since my doctor shut down his practice, so I know it's not easy, but you have to persevere.
Flexeril combined with amitriptyline can cause severe tiredness. Also, I believe Flexeril is supposed to be used only short-term (up to three weeks).
As for exercise, try anything aerobic. The oxygen will help with the tiredness. Easy things to do are yoga breathing and stretching, and short 10-minute walks (preferably outside) a couple of times a day.
I hope you start to feel better. Keep us posted on your progress.
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Teeth Grinding
#285409 - 10/06/06 07:01 AM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Ouch - I used to do that too~ stress!!!! I got my dentist to make me a block to put in my teeth before bed. (they are kinda expensive, but custom fit.) After I while I stopped grinding them. My brother does the same, he just bought a hockey mouth protector as he doesn't have dental coverage.
I don't know if drugs would make you grind your teeth, but your stress level certainly could!
Cassandra
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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