Fibro-patients---problems with meds--I may be able to help

Discussion in 'Fibromyalgia Main Forum' started by Larac., Nov 30, 2008.

  1. Larac.

    Larac. New Member

    Hi, I am Larac---I worked in pharmacy for 20 yrs, until 2007, when my fibro pain, headpain etc--my Dr.--rheumo, I been seeing since 2006--said, I really need to resign my job and devote my energy and time in getting my symptoms undercontrol, this was the hardest thing I had to do--I love what I did, but at least my knowledge of medicines -both professional and now that I am on receiving end, I understand side effects better, know what works or not---and I am also able to talk to my Dr, about different meds and that makes him understand that I just do not want meds to take---I want meds to get this fibro pain under control--

    I have tried at least 40 different antidepressants before I found the right one--Meds affected your whole being--
    I have tried opites for pain, which at 1 time I was taking 9 meds---I said, enough is enough---I very rarely take pain medication, and if I do it is vicoden. The morphines, oxycontins, percocet, msir--did nothing to ease pain....

    I get nerve block in left side of neck and shoulder...the headpain is the worst--it kept me in bed for 2yrs---horrible

    I found out that the FDA is getting ready to release 20 new meds to help with fibromylgia---

    I just know cymbalta and Lyrica almost pushed me overboard----not for me...

    Please let me know if I can help in any way, even with social security disability..Larac..
  2. Janalynn

    Janalynn New Member

    I'm sorry that you had to give up a career that you loved and that you have also suffered with Fibro.
    Thank you for the information that you have provided!
    I didn't have any luck with Cymbalta or Lyrica either - some people have been helped tremendously.

    What anti-depressant did you find right for you? I know everyone is so different.

    Again, thanks for your willingness to offer info and help to everyone here!
    Hoping you're feeling better!
    Janalynn
  3. Larac.

    Larac. New Member

    I am taking effexor xr 150mg, 2 times a day....it has been working well....it will be generic by end of 2008----The tablets are generic, but the capsule (xr) is better--it is extended release (xr) so the medicine is released the day...It has helped with chronic pain and fatigue and especially the moodiness..and the frustrating us fibro-patients need to indure..

    I have tried prozac,paxil,paxil cr, lexapo,celexa, etc----it was a horrible road to have traveled..

    I hope I can help anyone I can with my knowledge of medicine, and by my own experience with fibro----it has been a struggle everyday, since 2006..

    Take care---I hope this helps----I am here if you want to talk----Larac.
  4. bobbycat

    bobbycat New Member

    Also I have had trouble taking antidepressants due to tireness issues but I do not know if I have taken a timed release one before. I wonder if that would help with the fatigue I experience on them. Any thoughts?
  5. Larac.

    Larac. New Member

    Hi, I know alot about this type of medicines, I was in pharmacy carerr for 20 yrs--

    I have tired so many, I though i would never be able to take anyghting---

    Cymblata and Lyrica re my enemy drugs---everytime I think about the hoorible things these meds to me I could just cry--

    I found effexor xr 150mg---it has been wonderful--

    I hope this helps--Let me know if I can assist you with anything else..even my experiences with different meds I have been on and I had a terrible time with fibo--I was in bed for 2 yrs--I have headpain all the time and that is, I believe horrible for anyone to have to have such pain for as I have 2006---

    I just want 1 day of being normal, no pain--I do alot of research on fibro--and different meds that the fda are working on for this condtion--2 of them to be exact---so there has to be a light at the end of this horrible nightmare...

    Larac---Let me know how things work out for...
  6. Janalynn

    Janalynn New Member

    I like having your expertise... =)
    I was on Lexapro - worked fine - (not for depression or Fibro) for a few years, but for a low- level anxiety. Doc put me on Wellbutrin - Whoa- got horribly depressed for no reason. off that I went. Back on Lexapro - fine for several years. Then Fibro hit hard - diagnosed...put on Cymbalta...horribly depressed, back on Lexapro within two days, felt totally normal again. SO, I go to see a psychiatrist just because I have a friend with Fibro who says her psych is her lifeline, knows how meds work together etc. I AM down - life is not good right now, but before this I have not been depressed. (VERY positive person) This guy says I'm bipolar (II) because, partly because of the way I reacted to AD's in the past. ??? Put me on Lamictal.
    The questionnaire I had to fill out which I like to call the College Entrance Exam (40 pages!) must have indicated him to say this, but the funny thing is - I answered all things Fibro related - "is your sleep interupted", do your legs ache" etc. Of course, this must mean you're bipolar as well. Hmmm. I so disagree with him. I even said, but I'm normally such a happy person and he said "yeah, that's the part that doesn't fit". Yeah.

    SO...are other people on Lamictal for other reasons - can it cause me more harm than good?
    I notice no diff....yet. Not good anyway.
    Thanks,
    JL
  7. greatgran

    greatgran Member

    Thanks for your help as I have such difficulty in taking meds. I have CFS and FM.

    The only Rx med I take is xanax and it has been a great drug for me. I tried many antidepressants with horrible side effects. I usually take 1 mg xanax daily divided into 4 doses and if in a crash or flare I can up my dose. My Rx calls for .05 three times a day.

    I can take 2 bufferin with 1/4 to 1/2 mg of xanax and for some unknown reason this does help some.

    Since this DD I suffer with anxiety/depression big time and when crashing its soooooooo much worse.

    Have tried neurtion, lyrica and on and on with no help .

    I know xanax has a bad reputation and shouldn't be used long term , well I have been on it for 6 years now and can say it does help.

    I do take vit. C, multi-vitamin, magnesium, vit. D3 and fish oil in flax seed, tums, and calicum.

    I heard that if you take vit. D3 you shouldn't take tums, any truth in this?

    Welcome and thank you for any advice you can give each of us. I am so sorry about your job as I too had to resign from mine and miss being able to work so much.

    God Bless,
    greatgran

  8. hensue

    hensue New Member

    I am with you on the headaches this is hensue and i am applying for ssdi so anything would help me i am going with allsup. tried topamax for headaches worked but bothered my kidneys he would not even try lyrica so i am excited hope there is a med that will work
    Thanks give me all the help you can
    Hensue
  9. robin1667

    robin1667 New Member

    Maybe you can answer this for me. You can look at my profile for my health issues. I am on effexor xr 150mg a day. It has helped, I have asked to have the dose increased and my doc says that he can't up it because I am at the highest dose for it. I don't understand this when I see others taking it twice a day. I've told him it has helped but I feel I need a little more help for my depression and anxiety. I can't even get him to prescribe pain meds for me. I haven't found any that have helped so far. He tells me to take Tylenol Arthritis for pain, but it doesn't help. I don't know what to do. Switch Dr.'s? Thanks, Robin
  10. Larac.

    Larac. New Member

    I worked in pharmacy business for 20 yrs and have seen scripts written by doctors for patients who take effexor 6 times a day--even the xr (extended release) before I started taking effexor xr 150mg 2 times a day, I took the xr 75mg 4 times a day--so the doctor either does not want to be bother or does not bekieve in your symptoms, can u find new dr---one who specializes in fibro---my dr, has fibro himself, and I have been seeing him since 2006--I am very afraid to jump from dr to dr---but you need one is going to listen to you and help you--

    I was on all sorts of pain meds from morphine, oxycontin, ms contin, darvacet, percocet and on and on---I told him no more, they did not help me---I have vicoden but I really do not take it---

    I get needles (nerve blocks) I have gotten at least 30 over the cross of 3 yrs---the last one I got nov 21st, has worked well for me---My headpain has subside for the first time in 3 yrs--

    I have so much I can share with u, if you like---I can help you maybe with medications that have helpedd me--and we can talk about are symptoms---let me know--I have done alot of research on fibro-chronic fatigue and pain-migrianes etc--

    Thanks for the reply--Larac..
  11. Larac.

    Larac. New Member

    Well to start, have you try talking to your doctor? do you have a dr. who specializes in fibro?

    My doctor actually suffers with fibro--he goes through the same pain we do--he has been a god send to me..

    I take 3, 1mg xanax at night to sleep, and I have taking them for a while---but the after taste is horrible--I have told him i would like to try something else, but restoril, ambien and ambien cr have not worked, I am going to do lunesta, took it before and it worked---my dr, also told me about Xyrem---But it is stiill in trial studies and not in united states pharmacies...

    I did alot of research on this drug---I hope fda approves it---I am also asking him about doxepin---I hear that works well for sleep---

    I have do alot of searching about fibro and the symptoms and educated myself on my condition---I told my dr--no more morphine, oxycontin, ms contin--diluaid, percocet, etc--- still felt horrible---

    I get nerve block injections in left side of neck for spasms and sometimes in left shoulder--

    My head never stops pounding----noises and sounds are very hard for me---

    Hope to hear from you soon--take care--I also took cymbalta and lyrica and I had horrible side effects--there was a time I could not talk about these 2 drugs without crying--

    Larac.
  12. Larac.

    Larac. New Member

    Thank you for your reply---I have leg twitching at night and even daytime twitching, arms, hands, fingers---I was given requip 0.25mg for it and it worked, I have not had any problems with my legs---

    Do not listen about being BI-POLAR---

    Lamictal is an older drug--it was not prescribed by doctors oftem when I was in pharmacy business---I can find out for you???--i do not want to guess---but I can find out--Did you tell your doctor of your concerns??/

    Do you see a reg. physican?or specialists?

    Hope to hear from u--take care--Larac..
  13. Larac.

    Larac. New Member

    I have had my migrianes since 2006--they are horrible can not function.

    I take Imitrex 100mg, but I can lnly get 12 tabs amount even for generic is espensive-inbetween pain I use midrin, Imitrex is my last hope--

    The FDA is working on 20 new drugs to help people in this conditon, should know by end of 08--

    Lyrica gave me terrible side effects from 1 capsule--and so did cymblata--

    Please let me know if I can help in any way--

    Larac
  14. Larac.

    Larac. New Member

    i JUST WANTED SHARE MY KNOWLEDGE OF MEDICATIONS i HAVE TRIED AND HOW HORRIBLE THE SIDE EFFFECTS WERE FOR ME..i ALWAYS TELL THE PERSON i TALK TO SEE A dR..


    i DID EVERYTHING TO TYPING SCRIPTS (WHICH ARE HARD TO READ) IT TAKES SKILLS AND ALAOT OF KNOWLEDGE-- i DID RETAIL (CVS, ECKRED,) i WORKED FOR WORKERS COMP AND INNOVIANT PHARMACY--mY DUTIES WERE TO MAKE SURE MEDS WERE COUNTED CORRECTLY, TALK TO DRS ON PHONE ANDD GET SCRIPTS, FILL MEDS, PLACE LABEL ON BOTTLES, i CALLED iNSURANCE COMPAINIES EVERYDAY TO GET OVER RIDES FOR MEDS FOR PATIENTS,,,

    i DO NOT SUCH DOSES OF ANY KIND, EVERY ONE IS DIFFERENT--i AM HEAR TO LISTEN AND HOPEFULLY SOMEOME CAN LEARN FROM ME WHAT i HAVE TRIED AND DONE TO GET WELL

    i MISS WORKING AND BEING AROUND PEOPLE WHO NEED MEDICAL CARE---

    I HAVE DON EXTENSIVE RESEARCH ON FIBROMYLGIA--MIGRIANES AS SO FORTH0

    i FOUND OUT THAT FDA IS WORKING ON 20 NEW MEDS TO HEJP FIBRO PATIENTS--

    I JUST WANTED TO SHARE MY EXPEREINCES AND THE EFFECTS OF MY CONDTION AND HOW IT HAS HURT MY WHOLE SELF BEIG,,,

    i AM SORRY IF YOU GOT UOSET, BUT i THINK YOU MIGHT HAVE MISUNDERSTOOD--

    lARAC.
  15. robin1667

    robin1667 New Member

    I feel you are offended by the question asked of you. And i for one am sorry for that, but we have to be careful. Many are seeking comfort, understanding, and answers. Which is great. But we have to be careful, We are are I guess paranoid with good reason if you think about it that a Ins. agent or others are out there to get info about us that could ruin our chances for much needed help for social security disability or whatever the case may be. I can understand why you are offended by this. And I am grateful that you found us and are here to help us and listen. And I hope you continue to come here. I feel your insight could be helpful and may give us some more understanding of these DD and as to what possibilties are out there for us to try to feel better. Some of us sure don't get much help from the Dr's we have. I WILL talk to you later about my problems. I'm just not totally awake yet. Thanks, Robin
  16. Larac.

    Larac. New Member

    I justed wanted to share my knowledge and have friends that maybe i could make happier buy sharing what I have been through and the different meds I have tried and other things..

    I am sorry if I made anyone thinks I would go out of my way to hurt anyone--I had a dr. give me lyrica and it really messed me up--I was not applying that it does not work for others, because I know it does..

    I just have alot of training and knowledge and since I am home all day bored to tears I thought maybe I could help, or just be able to listen to some who needs to vent..

    In the beginning of my fibro, my headpain had me in er---I kept telling my parents to get my coffin ready, I was in so much pain and tired of trying meds that I thought would help me, but instead they made me sicker---it affected other organs in my body, especially when you get your hopes up with each new med you try and again you start to have vomitting and nausea etc..

    I am writng a book on my expierences with Fibro-and how it has affected my life and of so many others...Please understand I mean no harm to anyone, just help and I also have learned from this site things I did not understand before...
    Larac.
  17. hensue

    hensue New Member

    I dont know where they are coming from here unless this board is just to buy the pro health stuff, If we cannot get other opinions from people then why are we on this board? You have not offended anyone, i have heard lyrica and cymbalta were bad. I saw someone who came off cymbalta to quickly and it was real bad. I think people here have enough sense not to go out and try to get a drug just because someone mentions it.
    Please do not be offended some people just get out of bed like this! I know your here to tell your expierences and that is helpful!
    Please stay on board i appreciate it that is why we are on board for info!
    Thanks
    hensue
  18. Larac.

    Larac. New Member

    I did not use the works I was a pharmacist-maybe it came off that way, but after 20 yrs of tyoing scriots and knowledge of meds and my training I believe I can at least try to comfort some people that have taken same meds I did and be able to tell they what happened to me, I always tell anyone to talk to their dr...I just want to use my skills to help others--and to see how they live everyday with this illness.. Sorry if I mislead you..Take care Larac.
  19. Larac.

    Larac. New Member

    I am on here to learn and hopeful heal someday--I just want someone who wants to talk to me if I have knowledge that I think I can share with them I will, If I can not I tell them to talk to dr....i am a good person..Larac..
  20. robin1667

    robin1667 New Member

    I KNOW that you did not use the words that you were a pharmacist. And I DO apreciate any help I can get from anyone on here. You did not mislead me. I saw the capital letters you wrote back in and thought you were upset about someone asking if you were a pharmacist or what. I did not and do not want you to go away. WE need you here! Guess I should have stayed out of it and tried not to explain why you were asked. Another lesson noted and learned. I was trying to help.
    I posted to you earlier, just look for my name you'll see it.
    Hensue-I sorry you felt We got up on the wrong side of the bed.I don't feel I am a bad person.Nor do I feel the person who asked the question is bad.
    I think I'll just sit back and just read the posts instead of participating.
    [This Message was Edited on 12/04/2008]