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Tuesday, November, 24, 2009
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I hate life right now

dayk64
dayk64
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I am a 44 yr old woman with chronic pain since a work related injury...

dayk64

Saturday, May 30, 2009
View All of dayk64's Posts
Don't get me wrong, I would never do anything to hurt myself or try to end my own life. I have way too much pain and would never cause anyone else any pain. I am just so tired of being in pain and not getting any help for it. I have Fibromyalgia and Post Concussive Syndrome. My life is a nightmare. N...
  1. Medical marijuana
    mustbehope
    Saturday, May 30, 2009 at 11:48 PM

    I have never had the opportunity to try it, but I have heard the same positive things that you have.  I can't be around smoke at all, so would need an alternative form.  I understand that it comes in pill form, something called Marinol.  I'll bet it is not available, but at least in San Diego they are revisiting their position on medical marijuana.  If it helps someone with pain or suffering from cancer and chemotherapy or AIDs, it just seems so heartless to withhold it from appropriate patients, in a very regulated fashion.    Hang in there--we all face way too many hurdles and no one has any idea what pain we endure.

    Reply
    re: Medical marijuana
    dayk64
    Wednesday, June 03, 2009 at 10:59 PM

    Thanks for your comments. I am so glad my sister let me know about this site. It is a great place to find information and to vent. I will ask about the marinol. That might be a better choice for me as well, since I am allergic to smoke. I will always hang in there, but it is just tough some times. Sorry it took so long to respond. I am keeping busy at work. It helps to keep my mind off my pain when I am busy, but I sure can't do much when I get home. I am just too exhausted and in too much pain. Kim

    Reply
  2. I've heard from others, but no personal experience with pain
    Betty Boop Too
    Sunday, May 31, 2009 at 03:08 AM

    Hello Dayk

     

    It's a plesure to meet you, but sure wish it did not have to be at a pain site and that your in pain.

     

    I've not had any personal experience with Marjuana for my pain, but have heard from others it has helped them.  I have also a friend who uses marinol for his pain and swears by it.

     

    I think every single one of us have had those times when we can't help, but hate our lives.  especially when pain first began and we were all so under-treated or had not found a correct medication or doseage. 

     

    Getting treatment for ANY Chronic Pain situation takes way too long.  Many have to struggle through hundreds (it seems) of Doctors just to find one willing to treat our pain, then it takes months to years to find a correct med for each individuals  needs and the dosage that we each require to help gain some function back. 

     

    The first couple years of my pain, I thought it might be killing me, as it certainly felt like something inside me was dying, along with my physical abilities, mental & emotional function and I thought if something did not help me soon, I was going to be completely crippled in a matter of months.

     

    Just keep on moving, fighting for your right to be listened too and allowed treatment and Learn everything possible about pain, your personal illnesses and in time, you will find a doctor who fits you and understands you, listens to you and is willing to treat you like the valuable human that you are.

     

    We are all here for you and will do our best to support, answer your questions and help you with encouragement and understanding.  Your important my dear and you deserve to get proper treatment.

    If there is anything I can help you with, please feel free to send me a private message, eamail me or just post a note here and I will try to help you in any way possible.

    I'm happy you've found us and hope you hang around some so we can get to know you better.

     

    Gentle Hugs, Welcome

    Betty

    Reply
    re: I've heard from others, but no personal experience with pain
    dayk64
    Wednesday, June 03, 2009 at 11:10 PM

    It is so wonderful to have people out there that actually do understand. Nobody around me seems to. I don't look sick (just really exhausted), so nobody seems to notice anything until I can hardly walk or move for that matter. I really don't like to talk about my pain to my co-workers that much, so maybe I am to blame for nobody noticing me and my pain. I don't like being the center of attention and I don't like people feeling sorry for me. I will survive! I do think it is important to talk about it in some form or another though. It sure helps to get it out there for people to "see". Thank you so much for your comments. I really appreciate you spending the time with me. It would be nice to have some friends that do understand and who I really don't have to try to explain anything to. I thank God you are out there. Kim

    Reply
  3. constant pain
    lgh426
    Sunday, May 31, 2009 at 01:14 PM

    First of all get a different doctor!  Find a Rhumatologist that treats FM.  You have a right to NOT be in pain.  You will go through many meds 'till you find the right combination for you but it is out there.  I was finally diagnosed 10 yrs. ago and it's taken my doctors about that long to get the meds right, now we fine tune them every month.  I have been very blessed in that I found these doctors.  They listen to me, are open to new ideas and they "get it".  When my pain got to the point where I felt I needed opoids/narcotics they agreed.  They do not prescribe indiscrimately, but they do prescribe.  They understand my pain can be as bad as a cancer patient's pain.

    When you call to make that next (and there will be a next) appt. ask about the doctors, ask what they specialize in.  You must be your own advocate, no one else will do it for you!  Right now I take muscle relxers, an anti-depressant that is more for pain control, an anti sizure med, a narcotic and meds for my thyroid.

    As many Fibromites, I also have other problems like thyroid, herniated disc. and osteoporsis.  Sometime those other dis-eases keep your FM going.  You will also learn to tell the difference between which one is bothering you when.

    You can look at this 2 ways, this can be the start of an interesting new avenue of your life or well, you knoww what the other is.  I try to look at it optomistically most of the time but I tell ya sometimes it really gets to ya.  Then I pray and try to remember that God is in charge.  So I will pray for you and hop some of this helps.

    Reply
    re: constant pain
    dayk64
    Wednesday, June 03, 2009 at 11:20 PM

    Thank you so much for your comments and thanks for praying for me as well. I have been in constant pain since September of 2003. The doctors here in the Springs don't seem to care much about people in pain. They are all scared of patients getting hooked on the narcotics they prescribe. I really don't want to have to use narcotics either, but something that works would be a blessing. I had my primary care physician give me a consult for a rheumotologist earlier this year. That office called me back and said they don't deal with FM or chronic pain patients! That is so unreal to me. I am sure they have arthritis patients that are in pain all the time. What is it with Fibromyalgia that the doctors just don't get? I don't wish bad things to happen to anyone, but it would be nice to have these unbelieving doctors have my pain for 24 hours. That way maybe they would finally understand. It is just so frustrating. Thanks for being out there for me. Kim

    Reply
  4. I hope this might help
    dre
    Tuesday, June 02, 2009 at 05:13 PM

    I wished that doctors who refuse their pateints opiods as a part of their pain management would suffer for a couple of weeks with the exact pain and see how they feel and see what kind of quality of life they have without some pain relief . Some people ( drs ) might be able to take it for a couple of days or maybe a week or so  ( I mean you are ) but having that constant pain eat at you for weeks , months that turn into years is very different . An animal that no one understands until they are faced with it . It eats at ones quality of life that leaves most facing the future in constant high levels of pain feeling like you . You have the right to pain relief . Any dr who refuses to treat pain with opiods is not a dr . You have the right to pain relief .

     

    I have read and heard that medical MJ has helped many people who have not had much luck with traditional treatments for pain . I hope that you can find some who will treat you like you deserve . Frbro and IC both make ones system very sensative to many different things . Have you looked into trying vitamines or supplements to help .  I found this link that points to maybe a virus causing fibro . There seems to be some kind of trial looking into the virus connection . I hope the link i will post here helps you down the path of greatly improving your quality of live .

     

    Dre

     

    Reply
    re: I hope this might help
    dayk64
    Wednesday, June 03, 2009 at 11:44 PM

    Wow! I didn't read your comments until after I replied to lgh426...BUT I was just saying that! They wouldn't be able to handle it! I know better. They sit on their high horses and tell me to "just deal with it" or "work through the pain"! How can I get a handle on my pain level if none of them will prescribe anything for me? I will continue to look for a doctor who will understand and actually want to help me. I just don't know if I will find one any time soon. I certainly hope so. I so appreciate your comments to me. This site has already helped me a lot. Thanks for being out there. Kim

    Reply
    re: re: I hope this might help
    lgh426
    Thursday, June 04, 2009 at 11:18 AM
    No they could not take it. I don't know how many times I have said that! Somewhere (probably with regards to Military injuries) someone has stated that if a person is in pain they have a right to not be in pain. That means if you need narcotics then that's what you need. A dr is not upholding his oath if he leaves you in pain! First do no harm, if you are in pain he's doing harm by leaving you in pain!!!! If he doesn't want to give nacotics haw about something else like Cymbalta or the new one that works like it? There are so many things to try. Go back and get another referal to a different rhumatologist! DEMAND it. YOU PAY THE BILL!!!! You are the one that pays for the insurance, you pay the copay. Speak up If you have to shout up! If you got service like that from a restraunt you would not accept it would you? Get going, now is you time to grow horns, breath fire and let all your anger out! I will keep you in my prayers still. It is O.K. to have anger, just make sure it is directed in the right direction. Take Care lgh426
    Reply
  5. Welcome
    Scooter
    Thursday, June 11, 2009 at 06:31 PM

    Hey Sis, Welcome to our site. Don't give up. Keep trying to get the help you deserve.   Wink  Sharon

    Reply
  6. How about Lyrica?
    RitaRose
    Friday, July 03, 2009 at 02:18 PM

    Whoever it was that said to get another doctor...PLEASE DO SO!!! 

    I did, and the new doc put me immediately on "Lyrica".  It is a God-sent!!  It helps with the nerve pain caused from the fibro, and you will feel like a new woman!!  I know others who are also on it, and they feel the same way.

    I do know that the regular pain meds don't work for me and many others because the pain isn't caused by the same thing many chronic pain is.

    Check out their website, ok?  www.lyrica.com

    And let me know, ok???

    Sending many Hugs,

    Rita

    Reply
    re: How about Lyrica?
    dayk64
    Thursday, July 09, 2009 at 02:12 AM

    I tried Lyrica back in 2006 along with Cymbalta at the same time. Unfortunately, it didn't work for me. I was told to just stop the Cymbalta, but wean myself off of the Lyrica. A couple of days after I stopped Cymbalta I had a seizure type episode. It scared my son and I half to death. Luckily it only lasted for about 20 seconds or so. I got up in the middle of the night to let our dogs out and noticed my son still up at the computer. He seemed really upset, so I went in to talk to him to see what was going on. I felt really funny when I first got up. I thought I just got up too quickly or something. Anyway, I leaned over to give my son a hug to comfort him. The next think I knew I was on the floor and couldn't move, talk or see. I could hear my son Chris' voice calling for me and could tell how scared he was from his voice. I "woke up" sitting on the floor with my legs straight out in front of me. Chris had helped me down slowly when I "blacked out". He told me that I was staring straight ahead with my eyes wide open. I couldn't move, talk or see. I didn't convulse like a true seizure though. It was a horrifying experience for both of us. So I am here to warn you all about Cymbalta. Don't take it! The Lyrica and Cymbalta were supposed to work well together. Neither of them worked for me. Thanks for the comments. I really appreciate any help I can get. Has anyone tried the Savella that is now available for Fibro? I haven't heard any comments about it yet and was curious.  

    Reply
    re: re: How about Lyrica?
    RitaRose
    Thursday, July 09, 2009 at 08:52 AM

    SOOO happy that you brought up the "Cymbalta", because I also was one who tried it when it first came out. The doctor at the time had me on opiate pain meds and started me on the Cymbalta along with it. I also had that feeling more than once of being "off balance" and I fell twice before I stopped it all together. It was soon after that when they announced that "Cymbalta" may have adverse effects on some people!! What I cannot understand is why it is still on prescribed AT ALL.... So happy that you also got off it before it was "too late"....I simply don't trust that medicine, and I tell everyone I can about it!! Sending you Hugs

    Reply
    re: re: How about Lyrica?
    joanna
    Wednesday, November 11, 2009 at 09:34 PM

    OMG Lyrica!! I'm so afraid of this drug. My doctor put me on this drug even tho I don't have Fibro. He though it might help with my constant back pain. Well it really did nothing for the pain, but almost killed me. I started having problems with it right away. when I looked into all their bad side effects with this drug and I had them all and then some. My Dr. wanted me off of it too. He figured out a plan to slowly decrease the dosage. That sounded fine. Well when I got to the last ones in the plan and a low dose, that's when I thought I was going to die and oh, I wanted to!!! I sat in my bed holding myself and rocking and crying and praying and I would have done the dead even counted how many Vicodin I had, but I don't want to die  I couldn't leave this kind of legacy for my kids and family. To make a pretty long story shorter, after two trys with the same results I am now back on them. I had to lie to my Dr and tell him I really thought they were starting to work so he wooould prescribe more for me. What can I do? This drug was made in Hell!

    Reply
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