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Old 12-27-2008, 07:24 PM   #1
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Unhappy I Just Don't Know What to Think Anymore...

I have been on this board before, but not in a long time, except to occasionally read the posts. I need someone to talk to, and when I thought about it, I figured that the people who post here would understand the most.

I am suffering. I have such severe pain in my muscles and bones. The only thing that really seems to help is steroids. I was under the impression that steroids didn't help for Fibromyalgia, which has been my diagnosis for about 4 years. I'm 23 years old. Most of the pain is in my back and lower legs, but it always hurts everywhere.

Sometimes my hair falls out a lot more than it usually does, typically during flares. I also am fatigued, but it has been so much worse lately. If I can't get a nap in during the day, I can almost fall asleep on my feet. I sleep well because of the Ambien I take, so I shouldn't be this tired.

I just don't know what to think anymore. It seems like I'm getting progressively worse. I'm worried about how I'm going to get around the campus I'm tranferring to after next semester on bad days because parking is far away. I'm also worried about how long I'm going to be able to keep my job. Right now, I have an intermittent leave, so I can call off if I need to, which is now up to twice a month, three times this month. But, I don't know how long my body can take it. I'm a cashier and I lift a fair amount, as well as stand for six to seven hours in one position.

Could this be something else? Do steroids help anyone else? Please let me know, and thanks for your help.

 
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Old 12-27-2008, 08:20 PM   #2
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Re: I Just Don't Know What to Think Anymore...

Karen, Have you had a thorough thyroid check. You could be hypothyroid with some of the symptoms you are describing. If you do have thyroid problems, which many fibro sufferers do have you will have to get them under control to control the fibro. You need to do some research on thyroid problems and how they should be treated. Your doc may just tell you everything is fine if your TSH numbers come in within 'The Range'. Be sure and get a copy of your blood work. If you can see and endocrinologist that would be good. Thyroid is one of the things they specialize in. I mention all this because I could not get my fibro under control until I got my thyroid under control. Overwhelming fatigue, not being able to sleep enough, hair loss, joint and muscle pain, these are all symptoms of thyroid problems as well as fibro. The clencher for me was the symptom of losing the ends of your eyebrows. Yes, that is a symptom of hypothyroid and when my friend told me about it I was convinced.

Do steroids help fibro. They help my joint pain and inflammation, and sometimes they help with my energy a little. The answer to you question for me would be no not with my fibro. The muscle pain and stiffness the burning pain the sharp shooting pains, no steroids don't help with that. The side effects of taking steroids long term are not that great either especially for someone your age, if you don't have to take them for a life threatening illness I wouldn't. Do check into the thyroid problems though, I think you might be surprised. After about 3yrs. I finally got my D.O. to put me on a T3 drug for thyroid and it has really helped the most. For some reason I feel so much better with my TSH in the very high range and I have no side effects from it. Check it out, it may be what you need, you gotta keep fighting.

Glojer

 
Old 12-27-2008, 09:07 PM   #3
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Re: I Just Don't Know What to Think Anymore...

Thank you for your reply. I will tell you that I saw an endocrinologist several years ago, but not since then. I also went to a Fibro Clinic for a while a couple of years ago. The doctor had me on an insane amount of supplements and a few meds, including a med for Thyroid (low). Unfortunately, I didn't do what I thought I should do and ask him to monitor my bloodwork. The medicine ended up royally screwing up my thyroid and almost sending me into Thyroid Storm. I stopped the medicine and went back in check. Again, though, this was a few years ago, when I wasn't feeling so bad, so maybe it's time to get looked at again. I will look into that. Also, I agree with you about the steroids and side effects. But, I don't know at this moment how to live without them. I'm on a seven day course now and I get cortisone injects in my knees, hips, and back. Any other ideas to look into would be much appreciated. I really want to hear any insight I can. I'll check into everything I can.

 
Old 12-28-2008, 11:37 AM   #4
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Re: I Just Don't Know What to Think Anymore...

Hello,

It's sounds alot like fibro. I have the exact same problems. I hurt everywhere. I have a flare ups one after another. What I can suggest to you is to rest and try to get rid of this flare up. This may stop other flare ups. If you can take a break and stay home and really take care of yourself, sleep, eat right, do slow easy exercises, you may beat the chronic fatique which comes with flare ups. I hope this helps and I wish you all the best.... also talk to you Dr. for handicap parking. You should be allowed. It's worth a try.


take care and keep me posted
M

 
Old 12-29-2008, 05:27 AM   #5
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Re: I Just Don't Know What to Think Anymore...

hi karen,
i just went thru a series of 3 injections. i think they gave me a false sense of feeling good. steroid high. i have disorders that steroids would help. i refuse to take them in pill form. this series was my first. not sure i will do it again. i am in my 50's and i figure i need my liver and kidneys a bit longer so steroids on a regular basis are out. i can live with the pain.
it is alot to worry about for you. school, work, life. try your best not to worry about things that are tomorrow's concerns. life has a way of working out. when the time comes you will do what you can and you will do it wonderfully.
always keep in mind that stress is the #1 enemy of fibrobabies. and we musn't feed fibro it's favorite delicacy. us.
peace,
bluelakelady

 
Old 12-29-2008, 09:36 PM   #6
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Re: I Just Don't Know What to Think Anymore...

mista0316, thank you so much for your insight into my problem. What found from posting this problem, is not only am I getting ideas, but support, which I worry might have been lacking lately. So thank you also for that. I really am thinking of taking a medical leave from work for a couple of weeks. Right now I can't afford to that. However, my parents have also said that they will help me out as much as they can financially. I'm on break from school from the moment. However, I will be leaving for a trip to Mexico with my dad on January 4th thru the 11th. Aside from the physical traveling, this trip should be all about relaxing on the beach. By the way, if anyone knows of any ways to make traveling in a cramped up plane easier. Let me know. Thanks again, mista0316, I am going to try to do that when I can.

 
Old 12-29-2008, 09:53 PM   #7
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Re: I Just Don't Know What to Think Anymore...

Quote:
Originally Posted by bluelakelady View Post
always keep in mind that stress is the #1 enemy of fibrobabies. and we musn't feed fibro it's favorite delicacy. us.
Thanks for this quote bluelakelady. It is absolutely true and really something for me, personally, to think about. I definitely do tend to stress my self out. I figured there was no a little stress was going to make things worse. Now, from what I've read on this board, I can see that it does. Hindsight is 20/20, and I see now that stress is linked to some of my flares.
As for the steroids, I am on a 7 day tapering course of prednisone 5mg tablets. I started with 7 tabs and reduce by one each day until I finish them.
I don't know what all the side effects of steroid use are, so if you could tell or direct me somewhere to read about them, I will. Right now, however, I need them because I can't live in agony. I need a break. And, thank you so much. Knowing I have someone's support makes me feel so much better. I think I will have to keep coming here more often. I'm still open to other insight as well, so anyone please post.

Just for some more information: My daily meds include the following:

Zolpidem Tartrate (Ambien) 10mg Once--before bed
Cyclobenzaprine (Flexeril) 10mg Twice--one at dinner; one before bed
Tramadol (Ultram) 50mg Twice--one in the morning; two before bed
Lexapro 10mg Once--in the morning
Celebrex 200mg Once--in the morning

I also take Zyrtec-D, which is now over the counter in addition to several supplements listed below:

Ginseng (for stamina)
Cranberry (to prevent recurring UTIs)
Super B-Complex (for energy)
Vitamin D (for bone and joint health)
Ginkgo Biloba (to fight fibro fog)
5-HTP (because I've read a lot of positive things about it for fibro)

And, finally,

When the pain gets unbearable to the point that I would call my doctor's hotline or go to the ER, I take Vicodin. I don't like taking narcotics though, so it is a last resort.

 
Old 12-30-2008, 05:36 AM   #8
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Re: I Just Don't Know What to Think Anymore...

hi karen,
you are most welcome. i was fortunate to have a doctor tell me about the stress factor.
steroids can cause you to want to eat the whole fridge, retain fluids, and my favorite of all, personality changes. for me it is blunt honesty, and i mean really blunt. i had that tone that says "don't even think about it!" i don't really like that aspect of myself, even if it does work! giggle. it also gave me gobs of energy which i used fully. why not?
i found if i substitute water when the steroids called to me to eat that helped with weight. i gained 10 pounds this last time and have lost 5 so far. not really trying, giggle, must be honest. i also took extra hydrochlorothiazide to reduce the fluid build up. i lost those 5 pounds that way.
enjoy the break from pain. it is the silver lining, yes?
peace and no stress,
blue

 
Old 12-30-2008, 06:50 PM   #9
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Re: I Just Don't Know What to Think Anymore...

Karen, bluelakelady hit on the big side effects of steroids. I take 4mgs of prednisone daily and when in a bad flare I take 5mgs. for two weeks. I don't have any of the side effects blue talked about, I have actually been able to lose weight on the prednisone because it helps reduce my joint pain. I don't notice that blast of energy anymore, but the combo of the thyroid meds and prednisone has helped the overwhelming fatigue I use to have. One side effect I do notice and I try to fight it, is the craving for salt or salty foods. I have never salted my food at the table and put very little in my cooking because my hubby grabs the salt shaker before tasting anything and goes to town. I am getting so into the salt these days and it surprises me, but according to the literature I get with my meds craving salt is a side effect of prednisone. I'm glad it is helping your fibro symptoms, it does nothing for my muscle pain or my back pain. Muscle relaxers and my favorite friend Ambien help me more with that. I take a 12.5mg. AmbienCR.

You should try blues deep breathing exercise to de-stress, it works for me.

Glojer

 
Old 12-31-2008, 01:06 AM   #10
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Re: I Just Don't Know What to Think Anymore...

Hi,

These members don't steer your wrong. I don't do well with the steroid packs. I do pretty well with the injections. Also you may want to look into nerve blocks and ablations. This is what I prefer, so I don't have to take so much medication. If it gets bad I do use opiates with an anti-nausea drug. If you're cashiering get a sturdy box and put one foot on it and alternate. I used to do that. I liked doing stock, after I got into my own way of moving I think it helped to keep me more flexible. I did hurt, don't get me wrong. The hair falling out thing........do you take Depakote? (Not sure of the spelling)

When I fly I take Soma, it relaxes and has an anti-inflamatory in it. It doesn't make me sleepy and goofy. I have great luck with it, but there are several on the site that don't like to use it. Also drink a lot of water, try to stay away from salty things. If you can take out a loan before or are wealthy, haha, get the fruit and cheese snack if you are flying during meal time. I know I'm bad, but I eat marshmallow treats while traveling. I pig out when I get to where ever there is. Stand, even as cramped as it is every now and then and wiggle your legs. While you're sitting move your feet now and then like you are pressing onto the gas pedal in the car. I take a neck pillow and a tennis ball or piece of pool noodle. There is always a gap between my shoulders and lower back and the airplane seat, so the ball or noodle helps and if I get stiff I move side to side and it massages too. I am a reader, so that's a plus. Beings I usually travel alone I take word searches and crossword puzzles to keep my brain working. If you're having trouble with walking in the bigger airports ask for a ride on the little golf cart things when you book your flight. One will be waiting when you get off the plane.

It makes me sad to know anyone has to suffer this pain, but my heart is broken when it strikes young people like you. Best of luck and I hope you have a restful vacation.

DeBeachSiren

 
Old 12-31-2008, 05:47 AM   #11
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Re: I Just Don't Know What to Think Anymore...

when you fly be sure to call the airline and tell them you are disabled and require a wheelchair and assistance. this gets you to the head of the line and breezed thru the security check. it also gets you on the plane first and off with help.
i usually take a vallium to travel and i take up two seats when i can get away with it. i just curl up with my mask on and take up two spaces till the plane fills. for the most part i get my two seats to stretch out in.
enjoy the warm sands.
peace,
bluelakelady

 
Old 01-01-2009, 04:27 PM   #12
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Re: I Just Don't Know What to Think Anymore...

Thanks again bluelakelady, Glojer, and DeBeachSiren. I really appreciate the advice. I'm just about done with my steroids now. They upset my stomach this time for some reason, even though they haven't in the past. The injections are fantastic for me. I'm hoping the warm weather will help too. Thanks again for all your help.

 
Old 01-02-2009, 12:05 AM   #13
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Re: I Just Don't Know What to Think Anymore...

Quote:
Originally Posted by karensbiggestfa View Post
I have been on this board before, but not in a long time, except to occasionally read the posts. I need someone to talk to, and when I thought about it, I figured that the people who post here would understand the most.

I am suffering. I have such severe pain in my muscles and bones. The only thing that really seems to help is steroids. I was under the impression that steroids didn't help for Fibromyalgia, which has been my diagnosis for about 4 years. I'm 23 years old. Most of the pain is in my back and lower legs, but it always hurts everywhere.

Sometimes my hair falls out a lot more than it usually does, typically during flares. I also am fatigued, but it has been so much worse lately. If I can't get a nap in during the day, I can almost fall asleep on my feet. I sleep well because of the Ambien I take, so I shouldn't be this tired.

I just don't know what to think anymore. It seems like I'm getting progressively worse. I'm worried about how I'm going to get around the campus I'm tranferring to after next semester on bad days because parking is far away. I'm also worried about how long I'm going to be able to keep my job. Right now, I have an intermittent leave, so I can call off if I need to, which is now up to twice a month, three times this month. But, I don't know how long my body can take it. I'm a cashier and I lift a fair amount, as well as stand for six to seven hours in one position.

Could this be something else? Do steroids help anyone else? Please let me know, and thanks for your help.
Hello I am sorry you are having a bad time of it and you are right this is a perfect place to ask questions and vent , I can only speak for myself but when I flare bad steroids do help also I do lose hair when the flare is really bad Have you ever been tested for sleep apnea? I have that and was told allot of us fibroians do not get enough rem sleep .. worth a look into. I hate taking the steroid even though they help the pain I become very snappy, gain weight and get moon face. I also am followed by a rheumy cause my AnA is positive..but so far no dx of lupus.. fibro is so much fun..do not lose faith these boards have helped me allot painfree hugs

 
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