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Old 04-01-2008, 07:08 PM   #1
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Need advice

I have a doctor appt this Friday & I NEED to ask my doc for something for my fibro...I was diagnosed with this last year & refused to take meds. Now, the weakness & muscle/joint pain has become unbearable! I also have severe anemia which I know isn't helping my achiness & chronic fatigue. My neck & back & ankles are in constant agony & I have a 2 year old to chase around which is nearly impossible! Is anyone on Cymbalta, Lyrica, Neurontin or ANYTHING that works with minimal or preferably no side effects?? Please, I need advice before Friday, as I would like to ask the doc when I see her for something to help me! She wanted to give me a muscle relaxer which I really can't take due to the fact it will sedate me & like I said, I'm a mom who can't be sedated!! LOL! Thanks.

 
Old 04-02-2008, 05:17 AM   #2
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Re: Need advice

Hi ocd, and welcome to the board, although i'm sorry you have to be a member.

I am hardly an expert here, just being dxed myself last june. i can tell you that at that time a rheumy prescribed elevil for me, which is an antidepressant. she said it would help me sleep and help with the pain. i hated it, it made me groggy, anxious, and depressed. i stopped taking it. I happened to have some 5/325 mg oxycodone/apap from a gallbladder operation i had had a few months before. i started using them in small amounts, cutting a pill in fourths, taking what i needed, somedays more then others, but i've never needed more than 1and a half pill yet.

The rheumy was not happy with my taking this so i stopped seeing her. didn't like her anyway. my pcp now gives me the oxycodone. they do not give me any side effects at all, and i have trouble taking most meds, which is why i haven't tried anything like lyrica yet. so far the oc are enough to take the pain away where i can function. in the future i may have to take something else, who knows.

there are many wonderful and wise people on board who have knowledge of many other drugs and how they react. of course each of us is different, and you may have to try a few and see how they react with you.

Again, i'm sorry you are in pain, but i hope you and your dr. can come up with something to help you.

Let me know how your appt. goes.

wishing you well, stars

 
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Old 04-02-2008, 05:52 AM   #3
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Re: Need advice

try baclofen and neurontin. baclofen is a muscle relaxer with no side affect of drowsiness. neurontin taken at bedtime helps you sleep a bit but mostly works on those twitches and tingles. some people take it during the day. i don't feel the need to. bedtime is enough.
there really isn't a pain med that will take away pain and not alter your thought processes. exercise is the best alternative. does your little one like to take walks? this is easiest on you and still fun for your toddler.
the only down side of baclofen i have is constipation. this does not happen to everyone. i have taken 2 at a time and had a busy must think day and did fine.
welcome to the boards. may you always find answers for you questions, shoulders to learn on when you need it, and a good laugh to get you thru the day.
peace,
bluelakelady

 
Old 04-02-2008, 06:51 AM   #4
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Re: Need advice

ocdsux108, Welcome to the fibro boards. I am so happy to have you here, this is a wonderful place to come for help, advice, and friendship.

I think it is probaly time that you take something for your symptoms especially now that they have gotten worse. I commend you for not wanting to take something. My fibro came with a bunch of other illnesses-migraines, tmj, myofacsial pain, and fibro, and it was just in that order, so I was already taking medicines for pain, and other things. I take flexeril and valium as a muscle relaxant, the valium can also be used for anxiety, the flexeril I can take 3x daily and the valium I can take 2x daily. I am a mother of a 2 and 4 year old that I take care of and stay at home with them. I physically take care of them 100%, but now that my husband understands a little bit more he might take them to the park, or watch them at night so I can lay down, it happens everyonce in awhile, but I still take these meds and I function fine with them. Although I have been taking them since September, and have built up a tolerence, even in September I took the valium or flexeril and woke up fine. Actually I woke up so many times with my then 18 month old, it was like 4-6 times a night, I started sleeping with him, and now most nights both boys sleep with me in our king size bed. My husband works nights, and if he is not working at night he does not go to sleep until 4am, so we are almost up by then.

As for a muscle relaxer, I might suggest either valium 2 mg, or flexeril 10 mg. If I had to choose, I would pick the flexeril, as that is what got my mouth to finally open and the muscles to stop spasms. I take them both daily. They make a huge difference in calming down pain, especially accompanied with a pain medicine.

For pain, if you need a stronger pain medication, I might suggest either vicoden or vicoprofen. Vicoden is with tylenol, and vicoprofen is with ibuprofen, and helps with any swelling or inflamation you might have. I take oxycodone right now, and I am tapering off as I am on Long Acting because the pain from the tmj was 24 hours a day, and I could not control it ever 4-6 hours. It was like a roller coaster. My tmj, I hope, has calmed down, and I am now on 40 mg a day, and I was on 80mg last week. I do notice some face, and teeth pain but I can treat the body aches, teeth/face/tmj pain with my breakthrough med vicoprofen, if I need to.

So, I have covered muscle relaxant which is a must, the flexeril comes in 10mg, and I believe you can cut them in half if they are too strong. Also, a lot of us here who have fibro have a hard time to get to sleep and flexeril helps. There are also a lot of other types, but I think a lot of us has been or is on flexeril.

I am on Lexapro for anxiety/depression and I have been on it for 4 years or so. I did take a break from it to have my 2nd son, and then went on it again 2 days later. It helps me with anxiety and depression and also I have a little bit of ocd sometimes over little things, but before lexapro I thought about them constantly and would be up all night. Now though, I would try cymbalta if I could, but I would have to go off Lexapro completely, and then I could try cymbalta.

Last week I had a horrible couple of days, and I was in so much muscle body pain. I was curdled up on the couch and my boys were helping me! I called the doctor and they got me in. My doctor put me on Lyrica. He first tried elavil, for fibro and migraines, and it too made me too tired the next day and I could not take it, and then he was going to try one other and then try me on Lyrica, he saw how much pain I was in, and put me on Lyrica that day, and gave me a sample bottle. I am on 75 mg, and I really do not notice too much, so I probaly need to be on a higher dose. The nurse told me I would be dizzy and it would go away in a couple of weeks, but I never noticed anything.

I know you said you are a mom who can't be sedated, but you are a mom who is sick and does not feel good. When your 2 year old goes to sleep why can't you be a little sedated, more comfortable, and go to sleep a little bit more relaxed. I never missed my child waking up. If I am in a lot of pain, I take the valium or flexeril for muscle spasms during the day, and I am ok. If I am really bad off, my 2 year old still takes naps, my 4 year old does not, we watch movies and I can take a nap with my 2 year old and my 4 year old lays next to me and watches the movie. I take a nap about everyday. I notice I am so much better if I am well rested.

We have talked in another post how a lot of us need, an antidepressant, anti anxiety, muscle relaxant, and pain medication for when the pain is really bad, and also Lyrica. You may not need all of these on Friday, but you might find that eventually you will need a couple of these.

One of the biggest things I have noticed is that I need rest and a heated pad. I try to get as much resting as I can in a day, it makes a huge difference. If I over do it, my pain can be horrible and then I can barely move. Do you have a hard time in the morning walking? I have to take it easy and not over do it. I can not stand on my feet longer than about an hour, and good shoes or sneakers are a must.

Do you have a lot of stress? I have had my share in the past, and it really made me so much worse. My pain went through the roof, and my restless legs and arms were almost unbearable.

I hope I have given you some help as what works for me. There are wonderful people on here that have had fibro a lot longer than I have and they can tell you what works for them.

I am 31, and I seemed to go from being healthy and having an occasional migraine maybe 1-2 every week to having one about everyday to being in terrible pain from tmj, and then it went into my body and I have been in chronic pain since September. I have to battle chronic pain everyday, and it is not only me going through it, it is my husband and children. As I have done more research, most people who have fibro just don't have fibro, they also have migraines, headaches, tmj, myofacsial pain syndrome, depression and anxiety. We have talked about abuse or terrible stress/anxiety being a cause for fibro coming out or at least making it worse. I can account for that.

I know I have covered a lot, but I had to learn that if I am in pain, I am not a good mom as I am short and not able to do anything but lay on the couch.

This is a great place to be. I am glad you found us. Being here and making the wonderful friends I have helps me so much, as somedays the only interaction I have is with my 2 and 4 year old. They all have helped me with my health, medications, marriage, and just having someone to chat with. I have made some great friends.

I hope I helped you with a basic rundown of what I have learned and what helps me. The most important thing is rest and heat. Lots of heat, like from heating pads, blankets, or throws. I have them all, and they are all on when I sit down or lay down. Also, I have found that tiger balm helps some with muscle aches. It is expensive like $8.99 for a small jar, but worth it.

Well I have written enough, but I feel for you, and I wanted to help you with what I have learned and what works for me. I am, too, a mother of a 2 year old. I used to be afraid of taking nyquil and not being able to wake up if one of the children needed me. You need to take care of yourself or you are not going to be able to take care of your family.

One more thing, bluelakelady is a true charm and she knows best, we all adore her, and love her thoughts and advice, as we are all lucky to have her here. She mentioned exercise, and I try to do it at least everyday, but usually it ends up being 3-4 days a week. I try to get on my treadmill. It is hard with the kids, but our weather in Maine is not yet good enough to walk with the boys outside. I think somedays you could count chasing our 2 year olds as exercise! I have found that I hope it helps me in the long run, as sometimes after I walk it makes my pain increase, and I need to rest. It has a lot to do with my feet and not being able to stand on them for too long.

Good luck, and keep posting. We are all hear for you, and ask away!

Kassandra

Last edited by gorgee; 04-02-2008 at 06:59 AM. Reason: needed to add one more thing!

 
Old 04-02-2008, 11:44 AM   #5
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Re: Need advice

WOW--you guys are great & I thank you for the advice so far!! Here's a little background on me:
I'm 32 & have headaches/migraines off & on for my whole life. I'm also severely anemic & have B-12 deficiency. I've always been underweight my whole life & found that when I got pregnant & my weight increased by 60lbs, I got extreme pains in my body. Combined with the anemia & my low levels in my blood, my PCP decided to send me to a Rheumatologist. I don't have rheumatoid arthritis, but I do have Carpal Tunnel, undiagnosed TMJ, constant jaw/neck/back pain, muscle weakness/tightening (depends on the day), ankle pain, leg weakness, dizziness, etc...I could seriously go on...
In response to some of the comments:
I have been on anti-depressants for over 10 years & recently stopped. I also take anti-anxiety meds. Yes, I'm under stress & I've noticed that when the stress gets worse, so does the pain. You all have to understand that I am a total non-compliant patient when it comes to meds. I will usually try to talk the dr out of prescribing meds for me because I'm afraid of any side effects. I've been suffering a long time & I think I finally am ready to give in & take the meds. You're right...what good of a mom can I be when I'm in pain 24hr/day? Sometimes, when I'm leaning over to change my daughter's diaper (which takes less than 1 minute), I'm so stiff that it sends shooting pains thru my back before I can stand up straight! I used to "crack" my back & neck but for some reason, they don't crack anymore. I'm also tired, no, better yet I'm exhausted all day long...whether I get 8hrs or 2hrs or 18hrs of sleep, I feel like garbage!! My poor loving husband will want to watch a movie & I can't stay awake past 8pm because of the fatigue, which in turn makes my body ache everywhere!!!!
People don't get it...if I say my jaw hurts or my back hurts, they are all like "oh, you probably slept wrong" or something like that. They don't understand that the pain sometimes is overwhelming. Even my hubby looks at me like he wants to say stop complaining!! I would want to say that too if I didn't know what it felt like.
I just worry that since I'm so "anti-medication", will I ever get better? It seems like a dead end sometimes...
Thanks guys for being here...it helps to get all of this off my chest to people who understand.

 
Old 04-02-2008, 01:07 PM   #6
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Re: Need advice

Hi ocd,
As an alternative to prescription medications, another route is vitamin supplements. I have learned so much through my muscle therapist who also has FM. The 3 main chemicals that we FMers seem to be grossly deficient in are serotonin, magnesium, and cortisol. I take a multi-vitamin mineral supplement packet that I order from a website. The multi has extra magnesium, 350mg. I believe magnesium is a natural muscle relaxant. It helps to release tension from muscles. Getting enough of vitamin Bs is also very important. I recently started taking a 5HTP supplement for the serotonin. If you read up on it, the supplement basically helps your body to actually facilitate the production of serotonin. As for the cortisol, this is my understanding. Our adrenal glands are responsible for 'managing our stress response' (i.e. releasing cortisol, etc.). A large majority of people with FM have adrenal glands that are pretty much tapped out, meaning we're not releasing what we're supposed to when we're under stress, thus throwing the body's chemical balance even more off kilter. I take an adrenal cortex supplement to combat this piece.

I do currently take Cymbalta and I don't find it's helping with the pain or the depression for that matter. Anti-depressants reuptake the serotonin that already exists in our body. Well, for those of us who are either producing very little serotonin or virtually none at all, what is there to "reuptake"?! The great thing about the supplements is that there are no adverse side effects to deal with. I've been taking them for about a month and I have to say that my knees finally stopped hurting after 6 months of daily knee pain. I have a 3 and 5 year old so I know what it's like to be in debilitating pain and have no choice but to continue taking care of your children. It's so, so hard.
Speaking of children, mine aren't letting me finish up this post. I hope, whatever route you decide to go, you can find some relief.

Best-
Christine

 
Old 04-02-2008, 01:30 PM   #7
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Re: Need advice

ocdsux108, you just keep posting and we will try to help the best we can. We know you are doing the best you can, and I have been there and are along with you every single day. My boys, 2 and 4, keep me going, and pain is a part of every moment of my day. If you have time go back and read some of the older posts, as you mentioned your husband. We have talked and I have asked about help here for how to help my husband with my health. It all is such a battle, that just thinking about it exhausts me.

I am glad you are here. I have taken some meds over the last couple of months and except for elavil, I really have not noticed too many side effects.

Good luck and this is a great place to learn and ask questions. I feel so lucky to have found here and all these wonderful people who help me everyday. I feel they help me to have better dr appts. and sometimes have even helped me go to the drs (sweetjerseygirl, and some others).

Kassandra

 
Old 04-05-2008, 06:41 AM   #8
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Re: Need advice

Just an update of what happened at the doctor yesterday.
She gave me a sample of Cymbalta to try. She seems to think that it's the best one out there, without going the painkiller route, for fibro. Plus, it's an anti depressant which wouldn't hurt either, since I have depression/anxiety. I'm just afraid of the side effects so, I have to force myself to take it. She told me like other anti depressants that it will take about 4-6 weeks to feel relief. UGGHHH!! I have another appt with her in 2 weeks so, we'll see what happens. Meanwhile, today, I'm aching & I'm so stiff that I'm afraid to move! Hopefully, we'll all find relief one day!!!!

 
Old 04-05-2008, 08:20 AM   #9
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Re: Need advice

ocdsux, I am glad your appt. went well. I wish though she would have given you something to take to help you till the med, cymbalta, kicks in. Do you have something to take to help?

Fibromyalgia is such a battle, and you never know what your day will bring. My best days are when I do not move much, and I lay down or sit with heating pads. I guess for today don't move, and take it easy. Be good to yourself, you deserve the best! Please let us know how you are doing and please keep posting. You are in my thoughts and prayers.

Kassadnra

 
Old 01-31-2009, 02:56 PM   #10
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Re: Need advice

Quote:
Originally Posted by christine07 View Post
Hi ocd,
As an alternative to prescription medications, another route is vitamin supplements. I have learned so much through my muscle therapist who also has FM. The 3 main chemicals that we FMers seem to be grossly deficient in are serotonin, magnesium, and cortisol. I take a multi-vitamin mineral supplement packet that I order from a website. The multi has extra magnesium, 350mg. I believe magnesium is a natural muscle relaxant. It helps to release tension from muscles. Getting enough of vitamin Bs is also very important. I recently started taking a 5HTP supplement for the serotonin. If you read up on it, the supplement basically helps your body to actually facilitate the production of serotonin. As for the cortisol, this is my understanding. Our adrenal glands are responsible for 'managing our stress response' (i.e. releasing cortisol, etc.). A large majority of people with FM have adrenal glands that are pretty much tapped out, meaning we're not releasing what we're supposed to when we're under stress, thus throwing the body's chemical balance even more off kilter. I take an adrenal cortex supplement to combat this piece.

I do currently take Cymbalta and I don't find it's helping with the pain or the depression for that matter. Anti-depressants reuptake the serotonin that already exists in our body. Well, for those of us who are either producing very little serotonin or virtually none at all, what is there to "reuptake"?! The great thing about the supplements is that there are no adverse side effects to deal with. I've been taking them for about a month and I have to say that my knees finally stopped hurting after 6 months of daily knee pain. I have a 3 and 5 year old so I know what it's like to be in debilitating pain and have no choice but to continue taking care of your children. It's so, so hard.
Speaking of children, mine aren't letting me finish up this post. I hope, whatever route you decide to go, you can find some relief.

Best-
Christine
Could you tell me what the dosage is of the Adrenal Cortex?
Thank you.

 
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