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    Old 02-17-2009, 02:29 PM   #1
    4kids4me
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    Angry Ever feel like just screaming?

    I was recently diagnosed with FM. I'm mad. They put me on 300 mg gabapentin 2x daily, Robaxin 500 mg 2x daily, Ibuprofen 600 every 6 hrs, Elavil 10 mg at bedtime, Mxalt 10 mg for migraines, and Vicodin 500 mg as needed. I noticed a little tiny bit of improvement the second or third day I was taking all of these meds, and that's it. I guess I was hoping that there would be more improvement quickly. I go back to the doctor to get my meds adjusted on Thursday because the Robaxin and Elavil are not doing a danged thing and I'm so extremely frustrated. I'm so sick of being in pain and my nerves are fried. I've got 4 kids and a husband and I know I'm being a little hard on them. I JUST WANT TO SCREAM!!!! I know it won't do any good, but I don't know what will. Anybody have any ideas about what to discuss with my doctor besides just telling him "hey mr. doctor man, I know you're the doctor here, but these meds are doing what they're supposed to". I mean seriously, what the heck. I like him, he's a good doctor, but I'm just frustrated beyond belief. What do I do now?

     
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    Old 02-17-2009, 04:21 PM   #2
    chilyrabit
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    Re: Ever feel like just screaming?

    Oh yeah, I feel like screaming quite often lately. I wish I could tell you something like.........ask your doc to give you this med and you will be feeling great in a week. That's not the case though.

    I was dx'd 3 yrs ago. I've actually had the symptoms for ~15 yrs. I have tried and failed about 10 different meds. I had found a med that I was doing really well on. It made my pain manageable, my mood livable (for those around me) etc... That med was dc'd ~2 wks ago. It was causing kidney stones and I only have 1 kidney. Now I'm back to square one--or at least I feel like I am.

    Unfortunately, it is a process. We are all different and each medicine works different in our individual bodies. I was on Topomax and that is what worked so well for me. Then he put me on Zonegran. It didn't work at all. I just came home from the pharmacy before I got on the computer. This time, I am trying Tegretol. I guess time will tell. I didn't write this to be depressing. It is just reality. I have found this board to very helpful. It is nice to talk with others who deal with the same problems everyday of our lives.

    I hope that your doc is able to help you and soon. Remember, if you're not getting anywhere w/ your doc; you can always change docs. I know it's not fun but sometimes it's a necessity.

    Best Wishes.

     
    Old 02-17-2009, 08:17 PM   #3
    4kids4me
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    Re: Ever feel like just screaming?

    No, I don't think that what you've said is trying to be depressing. I know where you're coming from. I guess I'm just feeling a bit of anxiety about the whole pain thing. I just want an end, and there is none, and I'm having some trouble getting my mind to wrap around it. I'm newly diagnosed, so I've still got a lot to learn and a lot of time to try new things. My doctor is a really great guy, and I like him. I don't want to change doctors, and I'm sure he'll be really understanding. I'm just really frustrated with the whole situation. I think I just need to really think about things and come to the understanding that this is a lifetime problem. It's hard, and I'm still pretty emotional about everything. Thank you for responding. It's really nice to know that I'm not alone, especially when I really feel so alone.

     
    Old 02-17-2009, 09:10 PM   #4
    fastbreak08
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    Re: Ever feel like just screaming?

    It's a process of finding the right medication or combination of medications. I can be a very rollor coaster type of process, but with a good doctor and lots of support around you, you'll find the right medications.

     
    Old 02-18-2009, 06:52 AM   #5
    HopeLaughs
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    Re: Ever feel like just screaming?

    I'm sorry that you're on this roller coaster! I'm newly diagnosed as well, it's a tough hit, no doubt. I think it's important that we have support, and I know I don't really get that at home, so I'm coming here for it. It's kind of like networking. We can bounce ideas around, share new information, and sympathize. So, scream away, we're listening!

     
    Old 02-18-2009, 07:34 AM   #6
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    Re: Ever feel like just screaming?

    grab a pillow, shove it into your face and scream. it does help. keeping all this fear and frustration inside will only feed the pain. i loved my pillow. when i used to need it there it was, ready to keep my screams secret. i have been at it for more years than i recall.
    it does not actually get easier, it gets doable. it is a process of baby steps to learning your new boundaries and abilities. we must learn to stand and balance before we learn to run.
    there is much peace at the end of the many aspects of emotional changes you will experience. anger, frustration, mourning, guilt, so many levels to climb to return to the sun.
    one of the choices i made was to find a shrink to listen to me. with his help i learned more loving ways to treat my body and others. new coping skills for my everchanging body. mostly i learned how to evolve continually and never stop learning or searching.
    use your pillow. mine protected the ones i love from the worst of the worst of what i was feeling back then.
    peace,
    bluelakelady

     
    Old 02-18-2009, 07:36 AM   #7
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    Re: Ever feel like just screaming?

    Hey 4kids, Im sorry you having a hard time. I know also trying to deal with this and raising a family isn't easy. I have a husband a kids too.

    Unfortunately it could be a trial and error to see what meds do help at all.

    Every doc is different. I was dx this Dec. I am on Dicelfonac 2 x a day, Votaren Gel, Tylenol, Xanax, and lots of vitamins. I see my doc in March. I have to go for my blood work first ( he sends me for bloods every 2 months) and then I see him and goes over everything with me. He did mention thast he may have to change a few things when I see him.

    Another thing my doc said is exercise is SOOOOO important !! I do stretching and I will go to the mall a do alot of walking, but sometimes its hard. Sometimes I just dont have the strenght to do it, I will feel so weak. But I do try and so should you. Even if its 5 mins a day, try to do something.

    Another issue I am finding is weight gain. The past couple of months I have put weight on !! I had to buy all new jeans cause I couldnt button them. Is anyone else dealing with this issue ???

    4kids, I understand your anger. Back in Dec just before I was dx by my regular doctor I would just cry. I didn't know what was wrong with me. I was SOOOOO sick in SOOOOO much pain, and couldn;t figure it out. I didn't understand it. Then I was dx. Then my Rhumy gareed with the diagnosis, he was suprised that I was slammed with this cause a few months prior to that I was doing pretty good. (I was under his care for arthritic issues, Brusitis, Tendonitis ect)

    If you ever need to vent..this is the place. If your family doesn't understand, have the doctor speak to them or have them ask questions on this board. The people here are awsome !!!!

    Hang in there, and I hope you get some reliefe soon !!!
    __________________
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    Old 02-18-2009, 07:58 AM   #8
    4kids4me
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    Re: Ever feel like just screaming?

    Thank you all so much for your input. It really is nice to have an understanding ear. My so called "best friend", other than my husband, told me that so many people are being diagnosed with fm that if I have it, it's either not real or an epidemic. It really hurt me to hear that. My husband is trying to be understanding, but he's having a hard time. He believes that fibro is real, and that people do have it, but he doesn't understand how it got so bad so fast with me. I just had a hysterectomy Jan. 16th, and it seemed to go from uncomfortable but liveable, to extreme and disabling in days. It's like someone started a fire and it got out of control immediately. I've heard from my dr that it can happen that way after injuries, trauma or even surgery especially in undiagnosed patients. I believe that is what happened to me. It's just so much so fast it's hard to cope with. I would love to go to the mall and spend some time walking (and shopping!), but the only problem I have with that is that my two youngest kids are still in carseats, and it's really difficult getting them in and out, and then to try to keep them under control in a public place (3 and 4 year olds are just that way), it's just totally exhausting physically, emotionally, and by the time I'm done, I'm in pain, frustrated and just completely wiped out. It then makes the rest of the day difficult because I always have so much to do with 4 kids, 2 pets and a husband. I just want to lay around and do NOTHING for the rest of the day, but that's just unrealistic. I'm not feeling as frustrated and angry as I was the other day, now I'm feeling more sad than anything. It's just so hard to say goodbye to a "normal" life, MY life. Ya know?

     
    Old 02-18-2009, 10:07 AM   #9
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    Re: Ever feel like just screaming?

    4kids.I know what you are saying.

    We have some stuff in common. I also had a hysterectomy ( it will be 4 years in May) at the age of 39. After that, I was about 3 months post -op and started having severe anxiety attacks. Then about 2 years ago I had Nuerosurgery, then 8 months post op in a car accident that set me back, and from approx Dec 2007 or Jan 2008 my symptoms started with my hands, and joints on and off. Then May 2008 couldn't move my hands and my joints were getting realy bad. Was sent to a Rhumy and was put on the Declefonac and found out I had a Vitamin D difficency (you should get that checked out). Started to get better and was told at that point to take the med only when needed. In Aug 2008 had chest pain didn't last long, my GP said it was my muskularskeletal issue kicking up and it did go away pretty fast.

    Then just some on and off issues no biggie til Mid-Nov. That is when all of a sudden I was HIT BIG TIME. Pain in my chest SEVERE, throbbing pain through my body all over. It was horrible. It hit me fast !!!!

    It is now Feb and Im alot better then what I was. I still get oain almost EVERY DAY. It could be bad to dull aching. Im ALWAYS real stiff every morning. Some days are better then others.

    My hubby said the same thing to me, he belives in Fibro but doesn't understand how it could of hit me so fast and so bad. IDK either. Im new at this too.

    You deffinately have your hands full with your kids. I have 4 but 2 of them are my step kids. My children arent children there 22 and 23. My step kids live with us and they are 9 and 12. I also have 4 dogs and 2 cats.

    I ahve noticed that the stress issue...FIBRO DOES LOVE IT. It feeds on it and totaly exAUHSTS YOU.

    tRY TO TAKE HOT BATHS. I HAVE NEVER TAKEN SO MANY IN MY LIFE !!

    IDK if we will ever truly be "normal" again. I just try to enjoy the good days and try to tolerate the bad. I know its hard on my family too. Between the menopause and the fibro im a real B.... I know it !!
    Yah know what?? Maybe if yah scream...you will feel better !!! I think Im gonna try that !!!

    Hang in there, and don't worry ..we are here for yah !!!
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    Old 02-19-2009, 07:18 AM   #10
    4kids4me
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    Re: Ever feel like just screaming?

    I go in to see the doctor today, so hopefully he'll work with me to find the right meds. It's a really emotional rollercoaster, and I just want off. I'm trying to eliminate outside sources of stress too, and that's hard. Some people in my life have been full of drama and stress, and even though I'm tired of all the drama and stress, it's still hard to say goodbye. It's a long process, but I'm sure I'll figure things out. It's so nice to have someone who listens to me, thank you all.

     
    Old 02-19-2009, 12:42 PM   #11
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    Re: Ever feel like just screaming?

    Your welcome !!!

    Let us know what happens at the doctors office !!

    Good Luck
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    Old 02-19-2009, 07:28 PM   #12
    4kids4me
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    Re: Ever feel like just screaming?

    Well, not a lot happened at the doctor's office. He upped all of my meds, nearly 4x the amount I was taking of some of them, and he said if I need to, I can increase them by 1 pill every 3 days until I find the right "plane". He was really understanding, and suggested some websites to look at, and even maybe getting a massage periodically. Has anyone tried massages? It sounds like it will hurt..... But maybe it will help? The fog from the fm and the meds is driving me a bit crazy though. I'm having the hardest time concentrating on anything, or even following a conversation properly. Sometimes I'll even forget what I'm saying while I'm saying it, it's weird. Anyway, I hope this works (crossing fingers).

    Christi

     
    Old 02-20-2009, 02:59 PM   #13
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    Re: Ever feel like just screaming?

    it is a roller coaster ride hon. it took my doc numerous times to find the right drugs, in the right dosage and which combination of drugs worked best for my body. im talking years lol. but finally have a combination that seem to have worked best for me and that makes me feel a bit human. i do take alot of meds tho.
    elavil
    synthroid - hypo thyroid
    lisiniprol - kidneys
    cymbalta- suppose to help with fibro
    ambien to sleep
    zolpidem for sleep as well
    oxycodone - for pain
    fentanyl patch for pain
    dicyclomine - for IBS (most fibro persons deal with this)
    amitza - to help me go cause all other meds do constipate you
    lorazepam - for anxiety, oh and you do have anxiety when all pain is raging and it even hurts your chest to breathe
    trazadone - for jerky legs , i mean jerking limbs and arms when youre trying to go to sleep
    soma- muscle relaxer
    supplement iron - cause of my extreme anemia
    a good vitamin
    i hope i got all of them. these were chosen after years of testing other drugs and drug/combos. than added other things for particular things like anxiety , blah, blah , blah, so it took years to find right dosage, right combo, and right med.
    so, i know its hard to say be patient, but for me to find all this combo for me took 10 years. now doctors know a bit more, so hopefully theyll find the right stuff for you sooner.
    Jen

     
    Old 02-20-2009, 08:07 PM   #14
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    Re: Ever feel like just screaming?

    I just finished reading all of the responses since the original post. I has a hysterectomy in '04 and yes, the surgical menopause is terrible. I wanted to add a comment about husbands/family having a difficult time with our illness. I think that some of that is because in the grand scheme of things, we basically look ok. I doubt my hubbie would notice that I look exhuasted or that my face looks drawn like the people I work with notice. Maybe it's because he sees me all the time?? Anyway, it sounds like we are all here for one another. Thanks! Best wishes to all. Good night and everybody try to have a good weekend.

     
    Old 02-20-2009, 08:08 PM   #15
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    Re: Ever feel like just screaming?

    ooops, typo......I meant that I had a hysterectomy

     
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