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Old 09-26-2012, 10:11 PM   #1
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New To Fibro and Medication Trouble

Hello everyone. I've recently been diagnosed with fibromyalgia, and I'm still coming to terms with it. I have been sliding down hill over the last couple years, but it was mostly fatigue with a little bit of pain infrequently. Then it became a lot of pain, frequently. I'm not entirely convinced that it's the right diagnosis, but the doctors HAVE checked just about everything.

Okay, now here comes the problem. I'm not sure what to do about medications. I started Lyrica about 3 weeks ago. The first couple days were wonderful. Then I crashed, hard, and I was back to being in pain and no energy. I know that's not how it's supposed to work but it did for me. That was when I was on 75mg 2x daily. I've since gone up to 150mg 2x daily about 4 days ago and I think it's causing problems. The pain is worse, I've been gaining weight rapidly (4lb in 4 days), I've broken out in hives which I think might be related but I'm unsure (I get hives about once a year so it could be unrelated) and finally, my heart rate and blood pressure have gone up.

I had gabapentin before, and it also caused an increase in pain.

Here is where the problem is. The next medication to try is Savella. But I think I'm going to have problems with it. I have restless leg syndrome and Periodic Limb Movement Disorder, and antidepressants aggravate it really bad. I tried Cymbalta a few months ago and it made me feel extremely twitchy and agitated, like I wanted to tear my skin off. When I tried to sleep I tossed and turned and spasmed so much that I could not sleep at all.

I'm going to have to call my rheumatologist, but I don't know what is next. My rheumatologist and I had quite a disagreement last time. He wanted to prescribe me the Savella first. He didn't believe that an SNRI would be a problem for restless leg syndrome and went so far to say he doesn't believe in it. He also wasn't concerned about my high blood pressure, even though it's poorly controlled (I'm working with another Dr to fix that) and Savella's warnings indicate you should be careful with high blood pressure and Savella.

Needless to say, I'm not a fan of my Rheumatologist, and think I probably need a new one, but in the mean time he's all I got. So if I can't take Savella, which I probably can't, and Lyrica is causing problems, what else can I do? Anything? I'm in pain most days, at varying levels and rely on Tylenol 3. I was on Celebrex for a while but I started getting really bad heart burn from it (and it wasn't particularly effective anyway.)

Help?

 
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Old 09-27-2012, 07:36 AM   #2
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Re: New To Fibro and Medication Trouble

hi vicki,
only you can decide what you are willing to put in your body. i won't take the meds touted to "help all fibro sufferers." i tried one and it made fibro seem like a walk in the park. made the pain much worse.
i have massages, exercise a bit, short walks, changed my diet. actually i changed my whole life, giggle. for me the most important thing was adapting to it all. now that i have the pain is another aspect of my day, not all of my day.
get a new doc asap. maybe if you tell your doc, boy was that a bad idea on my part, the rift will be closed. as for bp your gp needs to determine if the med is a good idea or not based on monitoring you while on the medication. rheumys don't do that.
quit taking any med that makes it worse.
peace,
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Old 09-27-2012, 08:31 AM   #3
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Re: New To Fibro and Medication Trouble

Hi Vicki, I am new here too but not new to struggles with medication. Every medication affects people differently. I know that is NOT what you want to hear...I have seen people get better on the meds you mentioned, and then there are others of us who have tried everything under the sun during flares and nothing works. For me, I am down to anti-inflammatories, vitamins, and Vicodin during flares. Gabapentin, Lyrica, and ALL anti depressants make me too tired to take long enough to see if they will work for me. I have 8 kids and I work full-time so I would rather be in pain then be tired. All I can say is try everything! It is a daunting task but, different strokes for different folks. The thing with Lyrica is, you need to titrate up every few wks to see what dose is good for you, then you have to choose whether you can handle the side effects at that level. Savella takes a couple months to start seeing results, so if you are not patient and want results right away...it won't happen. I am not patient, I got too sleepy and couldn't function so I quit all of them. Hope you find something that works for you

Last edited by Administrator; 09-28-2012 at 10:16 AM.

 
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Old 09-27-2012, 09:40 AM   #4
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Re: New To Fibro and Medication Trouble

Unfortunetly this is a question we all seem to face
Ive tried Cymbolta, Nuerontin & Lyrica. Thy all seemed to make me more tired. I know they help because I've tried not taking any & was miserable. But at the time I would wait too long before taking tramadol (only one my Rhum will prescribe).
I've been on Savella for awhile. I did have to cut back my Wellbutrin when I went on it. I don't even take Wellbutrin these days. Although I prob should (anxiety).
Savella gave me energy at first, which I paid for.... But it doesn't make the fatigue worst like the others did. Fatigue is bad enough as it is. I have 4 kids & don't have a clue how the last poster does it! I know my 3 older kids have chores which helps but they argue sooo much! I have thought about going off my savella. I have been taking less. I hurt so bad anyways so not sure if its worst or not. I take tramadol twice daily. I am thinking about talking to one of my drs about getting a medical card for the "natural med". I never thought I'd go that path but I've heard really good things! No side effects like the meds we're on plus with all my nausea & vomiting issues, it's supposed to help that. Ingesting it helps with pain. Smoking it messes with the head which I don't need lol
My husband has always been against the natural drug. He doesn't agree with smoking & only drinks once every couple yrs. But he's the one pushing me in that direction lol
Oh with Savella, I like it but it makes me sweat really bad! I've never been one to sweat even in really hot weather but now it pours off me! Yuck!
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~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 09-27-2012, 10:27 AM   #5
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Re: New To Fibro and Medication Trouble

[QUOTE=thefarm;5062928] I have 4 kids & don't have a clue how the last poster does it! QUOTE]

After three kids you are already going crazy and never stop going, going... When they were little it was harder but now that they are older 9-16(literally, 9,10,11,12,13,14,15 and 16), they can do more which in turn helps me. And anyone who can deal with Fibro, can deal with anything! We are the strongest people I know...

 
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Old 09-27-2012, 11:06 AM   #6
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Re: New To Fibro and Medication Trouble

Lol I love your outlook!
Mine are helpful with chores & everything but so messy so spend time getting them to clean up their messes or I gather it & toss it in their rooms. They are a big help with the youngest. I do hope they don't argue as much when they get older. That's what really gets to me. I can handle noisy toys but yelling or arguing makes me wanna hide. 3 of our kids birthdays are 2 weeks apart. My youngest jut turned 3, then I have one turning 10 on Monday and another 13 two weeks later. The 4th one is 9.
We are a combined family which makes it hard. The 9 yr old is my step daughter. She looks more like me then 2 of the others lol But she is sooo mich like her mom, very imature. then because im not her birth mom (who choses when to be a mom) Kylee doesnt listen to me. i think she purposly likes to make me mad at her & its tough. i think once he gets past the games we'll be really close. I have raised her since she was 3. She loves to antagonize the others. They all live with us. I'm trying to get my husband more involved but he has been known to make matters worst. If kylee mouths off to him or tells at others he ignores it. But if the 2 that aren't his does something like that, he automatically grounds them for a week. Which I don't agree with so we don't get along then. I guess in time it'll get easier...
Do you have a husband thats helpful?
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 09-28-2012, 08:25 AM   #7
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Re: New To Fibro and Medication Trouble

We are a blended family as well and at first there were A LOT of struggles. Same as any. The kids were neglected and left to fend for themselves with their birth mother and so routines and rules were very difficult. I have been in theri lives for 11 years though, so even the 21 yr old was only 10 when her dad and I got together. Then when their mom decided she couldn't be mom anymore (drugs) it was hard because at first she did not want to let go, so the kids were confused. Even though they lived with me I wasn't their mother and they also resented me because I was everything she wasn't. I think that is what blended families need to realize. It is hard for these kids, their real parents don't want to be their parents. That would SUCK for a kid, I would hate a step-parent too. Knowing that my kids had their mom who loved and took care of them and never let them go and realizing that their mother let them go so easily...ouch! So, I tried not to let their outbursts hurt me. Eventually, the kids came around. I never spoke bad about their mother, in fact, she was my friend before she got into drugs and got my oldest daughter on drugs. The kids saw me for who I really am after living with me for about, eh, three years. Then I got lucky, their birth mother got off drugs and I started allowing her (and currently still do) to come over and spend the night every other week to spend time with the kids. Her and I get along like peas in a pod and she never steps over her boundaries. The kids don't ask her permission for anything, they always come to me. And everyone is in agreement that I make all decisions regarding the kids. She is like their friend but I am their mother, that is how we all see it. They love her and I am glad that she is back on her feet but she agrees she is not the mom they need. My husband had his hard times as well, treating the kids differently at first but I am the first one to admit I sometimes did too. Having a blended family is SOOOO hard and their is no right way or wrong way. You kinda have to feel around in the dark and figure out which light switch is the right one... I am a very strong person, by that I mean, I am aggressive and organized and I have very strict standards, so it is easier in my case with my family. Everyone who has ever known me knows I have the reigns on every sleigh, I never ride..I always drive. I'm not controlling, but I get things done so it is easier that my husband just let me run things and he backs me up when he needs to or we argue and I win because he cannot match wits with me...LOL Even my husbands ex (the birth mom) says "you always get what you want." It is a joke in my family. For me things fell into place, through support of my hubby and her. Most people don't get that lucky. It was a terrible first two to three years..I wanted to institutionalize myself, honestly, I thought I was losing my mind. But time goes by...and with husbands what you realize is..the kids are not going to be there forever. Do you picture yourself just with him, when the kids grow up...is it a beautiful picture? If it is not a good picture and you think you might kill him when the kids are gone..eh..well maybe it is time to walk away from causing yourself undue stress. If the picture is good though, then you love him too much to lose him over blending the family...eventually all will work out in that aspect. Much luck to you..blended families are HELL. ... Hugs to thefarm

Last edited by moderator2; 09-28-2012 at 09:15 AM.

 
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Old 09-28-2012, 12:35 PM   #8
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Re: New To Fibro and Medication Trouble

Thank You
Yeah when the kids are grown it'll just be us & I do look forward I it. Just trying to enjoy the bumpy ride along the way lol
My step daughters mom isn't into drugs. She's just very immature & has zero common sense. We get along & she's never tried to over step what I say. She's actually picked up how to be a mom from me which is good. But she is more of a friend than a mother to kylee. Kylee only sees her every few months unless one of us are heading that direction & can drop her off. The moms boyfriends dad had been Grandpa to kylee since before I came along. He helps so much because many weekends when the other two are at their dads, grandpa will come get her for the weekend.
The first few years kylees mom would supposed to pick her up Friday. She wouldn't show or call & wouldn't hear from her till the next time then it would happen all over again. Sometimes she'd call Saturday saying shed come get her, then never show. We made excuses for her for a long time & finally quit that. We'd just say, you know how it is... All that time kylee would wait around all weekend for her mom. It was so sad... But once we stopped making excuses & kylee figured out that was just how her mom was, it helped allot. She started finding other things to do & not wait around.
It's just tough because I can tell her to do something & it won't happen. I may even have to tell her 5-10 times before she'll listen. She's natorious for finding other things to do & ignoring me. Really good at screwing around. Thankfully my brother in law & a good friend sees this all the time & have been known to step in & tell her to listen to why I told her to do. She lies to me constantly which I won't tolerate. But grounding, losing privlages, time outs, early bed times, ect just don't work. Now I'm giving her extra chores for punishments which I'm sure she hates. If I tell my husband to talk to her he says "kylee don't do that" in a flat tone or mocking voice. So he sounds like its no big deal. Just doesn't help. I'm trying to get her to hang out with her dad more so he can deal with the behaviors because she listens to him better but still plays allot of the same games. I left her with him while I ran to town last week & by the time I got back she was grounded. She should have been grounded longer since she was throwing rocks at out camp trailer & truck but as usual it was no big deal to my husband. Now if it was another kid they'd be grounded after the first rock. Grrr
Unfortunetly I think she's just very immature & will have to wait until she gets older... She's just so much like her mom, it's tough. But when she is going through her "good phase" & wants to listen & be good, she's great!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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