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I have become my pain

sue in ohiossue in ohio Posts: 57
edited 06/11/2012 - 8:48 AM in Fibromyalgia
Boy do I understand the frustration I have been reading in all of your posts. I have had fibromyalgia for over 16 years, but the increased pain I am having now is something else. I still have not heard from my doctor about my MRI that I had done the day before Thanksgiving. During the past two months I feel "I" am gone and "Pain" took over. And pain is mean and has meltdowns when something does not go its way.

First our State Teacher Retirement insurance changed our insurance coverage for prescriptions and my meds will cost me all most double, my biest they won't even cover. I tried to call this company so I would know which meds were or were not on their list and if my particular pharmacies are their list and they said they could not tell me that till I am officially a member Jan. 1. Pain took over and I cried and ranted and raved. Then I wrote to our retirement system and complained and within two days had a manager from that insurance company call, apologizing and she was very nice and gave me all the info I needed.

Next, they took away my darvocet, the only pain medicine that does not make me sick. I wrote an email to the FDA ranting and raving about this and they sent me a reply saying it affects the heart- and like why has it been on the market for 50 years and now when it is cheap they say it hurts the heart? I took it as a teenage for cramps 45 years ago and had no problems and have used it off and on for the past 15 years for pain with no problems. I think by my second reply convinced the FDA that I am a lunatic so I got no reply.

The final straw was yesterday. I got my eyes measured for my cataract surgery sceduled for Dec. 9 and 16. The nurse said she was checking my formulary list before calling in the 3 different drops I would have to use before each surgery then for a couple of weeks after each one some 4 times a day which freaked me out to begin with. When I got to the pharmacy and they told me those 3 tiny bottles of drops were $112, I lost it. I was not going to take them and wanted to call the doctor back today and get a different med from my list, but my husband, fearing I was making a scene, insisted on paying for them with our credit card. I cried and ranted all the way home- I think I am a lunatic at this point. When we got home I threw the meds on the table and one landed on the floor and I stormed into another room. I later took my blood pressure which is normally 120/79 and it was 184/104. When I get mad my whole body and everything in it goes along for the ride.

I decided to cancel the surgery for Dec.16 on my right eye as it is not that bad, but I have to do the one next Thursday as it is really bad. I refuse to refill the $78 and $30 copay meds since there are at least 8 other anti-infectives and anti-inflammatory meds for eyes that are on my list. And with this fibro fog to have to put all these drops in both eyes, waiting 5 minutes between each one would drive me insane! I am having 12 people here for Christmas dinner and can't be messing with all those drops! I should have been able to react to thses things in a calm and rational way, but me the pain took over and did all the ranting and raving.

I keep a prayer journal and when these anxiety attacks happen, I can't even pray and that is really scary. I know God understands, but it just adds to my guilt and sadness. I want me back. I don't want this life, I want my former life back. I delt with the fibro well for 16 years till now with only a few meltdowns. I have always been a very emotional person- I even cried when Mary Poppins left with the west wind and ET went home for goodness sake- and it made me a very caring and empathetic teacher for 30 years. But this new me is just not cuttin it.

There, done venting and sorry it was so long. God bless you all who take the time to read the ramblings of this once sane and almost rational woman.

sue in ohio


  • Oh Sue...you are NOT insane...you are tired of hurting and feeling like everything is coming down all at once!!! I dont know if anyone would have been able to deal with all that any differant than you did!!!

    Please try NOT to beat yourself up even more than you have! Give yourself a break....maybe sit down with some warm tea/coffee and put on some relaxing music....just to get back in touch with the person you feel like you used to be:).

    I will pray that your life settles back down and your pain drops a few notches!!

  • Not really crazy, but look at everyting that we have to deal with.
    It is no wonder that we lose control and cannot deal with any new bumps in the road. The holidays only increase the stress. I am sure that most of us are doing things that we should not be piling on our already overloaded plates, just to make it through the next month.
    If it is not a problem to delay your eye surgeries until after the holidays, then maybe that is just what you need to do.
    Try not to have a meltdown-take yourself out of the situation-go someplace quiet and cry or scream or vent or do whatever you need to get by.
    There is no simple solution for any of this. It is just damn hard! I am glad I found this site. These wonderful people understand what we are going through, and they are there when we need support.
    When you get calm again, call your doc and tell them that you are following up on your MRI, and you would like to know what it showed.
    Prayers and happy thoughts coming your way.
  • Thank you for taking the time to not only read my rant, but also to respond. It really does help to know that there are people who really do understand. I will take all the prayers I can get.

    sue in ohio
  • I am sending prayers your way!! 8>

    Where are you in Ohio?

    I have to be up there soon for Christmas with the kids and grandkids!!! :H
  • So sorry that you are in such pain, and having problems with stress. This is a very hard time of the year for 'normal' (non daily pain type) people. With our medical issues and pain levels, the holidays make us overdue, hurt more, and then pay later.

    We are here for you. Vent away. Most of us have been there, and still are there at times. Welcome aboard!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • jlrfryejjlrfrye ohioPosts: 1,110
    Im with Brenda, rant away!!!! We all have done it and it does help. Insurance issues is enough to make a person scream. Put our pain on top of that and you have a explosive combination. Venting on here has always made me feel better and hopefully it will help you.
    Im also from Ohio
  • I am angry at my husband because he insisted on getting those stupid drops and have been cool all weekend. I wanted to refuse them and call the office and have them give me something from my formulary list. Plus the office told me they had simplifed the drops, but I looked them up online and you have to put them in 4 times a day for 2 weeks! I have a terrible time putting drops in my eyes and because of the fibro affecting every system in my body, I know they are going to burn and sting which would make for a miserable Christmasn holiday. And I have decided to cancel the surgery on the bad eye as well. I will reschedule in the spring on the bad eye and perhaps wait several years before having to get the other one done. I am eating very little as that is the only thing I can control as everyone else is telling me what to do about all the other issues.

    sue in ohio
  • Sue, have you considered seeing a counselor?

    I found a health psychologist and saw her for a few months when things were the worst for me- I was breaking down crying every day, alienating my friends, etc. I can't even tell you how much it helped me just get things together and cope.

    She gave me some new tools and I was able to simplify several things in my life that had gotten out of hand and were causing me unneeded stress (family issues mainly). I am still using the tools she gave me, and will go back to see her in an instant when things get bad again.

    It's true that these health problems take their toll on our mental health, but really we have to do our best to keep it together. Cancelling surgery you need because it is too stressful to deal with won't help in the long run! What you need is some tools and help to cope with all of the issues that are bombarding you from all sides right now! (for me, there were doctors that needed to be changed but I wasn't doing it because it was too hard, and I was putting off dealing with health issues because of it).
  • Really, if we can manage our stress levels (I found) the rest generally falls into place just so much easier. Whatever it takes to get the stress down and be a calmer, more tolerant individual.

    Your husband was probably trying to help by paying for the drops, not thinking of the principle of the matter, but to alleviate another stressful situation. Instead now, you are mad at him... :??

    It is true that pain,medical, and financial situations all take a toll on us, but we all know that stress can cause our pain to soar-something we try to avoid at any cost. I hope you find something that you enjoy doing, and do that for awhile to relax.
  • I have said a prayer for you. I hope that some of these can lift you up. We all know what pain is, and I do know how horrible it can become. >:D< >:D< >:D< >:D<
  • I did get the right eye done on Dec. 9, but cancelled the other eye as it is not bad at all. I am seeing my psychologist weekly, but still having depression and melt down type anxiety.

    After 3 weeks with no call I just quit my doctor and got appointment with the local pain clinic and I see the head of it this Tuesday. I got the copy of my MRI to take, but I don't understand a word of it-might as well be Greek! All I know is that there is significant arthritis in the low back which he wrote on the report.

    Since the pain doctor will be taking over all my meds for pain and sleep, I will talk to him about trying the Celexa for the depression and anxiety, just to take the edge off till I get myself in a better place.

    The one breakdown I really don't understand happened last Wednesday night. I was working out in the basement to one of my Leslie Sansone DVDs and I started thinking about my brother and I started sobbing uncontrollably! My brother dropped dead at the age of 36 back on March 6, 1994 while playing basketball with some coworkers. His death was the triggering event for my fibromyalgia. I thought I had handled his death by now since it has been 16 years and I have not had a reaction like that for many years! This just totally blew my mind!

    The very next day I had another meltdown talking yet again with my new prescription insurance people and had to hand the phone to my husband! I am just not going to call them because I just get frustrated and there is nothing I can do about it anyway. They have what they call patient advocates for you to talk to- that is the biggest joke I have ever heard cause they are no way any kind of advocate for the patients!

    I did have a nice holiday though. My 80 year old mother sang Oh Holy Night at our church Christmas Eve and it was beautiful then I had my boys and their families and my parents here for Christmas dinner and all went well- just the 4 grandkids whom I love dearly can be a bit overwhelming after a bit. My two grandaughters are 4 and 5 and they love to scream and run then the 10 and 7 year old grandsons love to make them squeal. It was so nice when everyone finally went home and all was quiet on the northeastern Ohio front!

    I got The Body Gospel workout program and did the strength interval today and boy was it a workout! I love to exercise and I figure painful muscles are better if they are fit and the exercise really does help with the stress. I did have to modify the jumping jacks because at age 61 with a bad back and fibromyalgia, I can't keep up with all those youngsters on there!

    sue in ohio
  • I have had fibromyalgia for 25 year the main thing I found along time ago is sitting around feeling sorry for yourself does not help anything,yes it is very painful but so is other medical problems and yes I have all kind of other medical things gone on like my spine from the neck to S1,lung and colon, knees, shoulder. I fill that yes I am in pain but the more you let it consume you the more it will, I also found that anti depressed made me more depressed, muscles relaxer and exercise helped me and yes the dr said he has not seen anyone’s fibromyalgia as bad as mine. All you doing is hurting you self by getting upset over all of this stuff it is not gone to change your insurance and all it is doing is cause you more pain sometimes are principles get in the way of what we need to have done.

    Sorry if this sound mean but it is true

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    Post Edited by Moderator haglandc
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