New to forum, need friends

Discussion in 'Fibromyalgia Main Forum' started by CoachPatrick, Aug 31, 2009.

  1. CoachPatrick

    CoachPatrick New Member

    Hello Everyone This is my first post and I'm having a really hard time handling my life with fibromyalgia. 2 1/2 years ago I got fibromyalgia while teaching chess to children in elementary schools. I didn't know I had fibrofog, but the forgetting and confusion caused me to lose that job because of the pain and going to the wrong school and having a hard time keeping track of the day of the week.

    When a rhumatologist told me my symptoms were fibromyalgia I thought that pain pills would be the solution but I learned better. After almost dying while using narcotics I finally realized that pain pills were only part of the solution. Meanwhile I started teaching chess to the elderly and started a nonprofit organization based on research that showed that adults who play chess are 60% less likely to get Alzheimer's disease than those who watch TV. I thought that keeping up with adults would be easier than then challenge of keeping track of children.

    I started the charity and several chess classes in my area but after about 2 years the pain after each class made it impossible for me to teach any longer. The charity is barely surviving because of the lack of volunteers and the stress of trying to keep it afloat makes my pain even worse. I am now at the point of shutting down the charity.

    I now pretty much live in a recliner with my dog Tigger and watch TV. I have no friends. I have no relatives other than a loving wife who works and I only see her for 3 hours every evening and on weekends. I am very lonely.

    I take Lyrica and Tramadol for the pain and Cymbalta & Klonopin for the depression. Which I'm told are the best medications I need some friends who can support me and understand what I am going through. Would you like to be my friend?


    Coach Patrick

  2. Rafiki

    Rafiki New Member

    I don't have FM (I have ME) but there are plenty here who do. I just wanted to welcome you to the community.

    On this board you will find many people who understand what you are going through. There are quite a few men on the board, too. (Not me.:)

    There are also a lot of friendly people, many with FM, on the "Chit Chat" board (found on Message Board pull down menu, upper right) where people talk about Off Topics things. A lot of the Off Topic stuff is directly related to FM - living with it, laughing with it, having friends (here) with it.

    You've come to a good place. Don't be shy. Jump into any thread that interests you. Wander over to chat and introduce yourself and, again, feel free to jump into any conversation that appeals. None stand on ceremony here.

    Welcome - sorry you need us!

  3. FibroFay

    FibroFay New Member


    I'm fairly new here also. I have FM, so I understand your pain and "fogginess" too. There are alot of us here who understand.

    I don't post too often as working at the computer causes me shoulder and arm pain. But, I read the posts, so I'll be around here too.

    Know that you are not alone. We are glad to meet you but sorry you need to be here.

    My best wishes, Fay
  4. AuntTammie

    AuntTammie New Member

    just wanted to say that you are not alone and are more than welcome here
  5. rockgor

    rockgor Well-Known Member

    Welcome to the board. Rafiki is right! Visit the chit chat board (not a chat room).
    Folks discuss kids, pets, TV, music, old times, recipes, and things too
    fierce to mention.

    I am old and feeble. Or some days I'm feeble and old. Anyway, the chit chat
    board is my primary social outlet. These DDs (darned diseases) often leave us
    isolated. Hard to keep friends when we can't make appointments to do things.

    I used to play bridge on the net. That was a chance to chat w/ people, but
    my Alzheimer's won't let me remember the cards anymore. I would play
    less demanding games like hearts or canasta, but can't get the electronics
    to work now.

    Anyway, it's like the third law of thermodynamics. The more messages you
    post, the more people you'll be talking to.

    How old is Tigger? Used to call my younger brother Tigger. Now that he's a
    grown-up cop and grandfather, we call him the more formal "Tiger".

  6. JewelRA

    JewelRA New Member

    Hi Coach Patrick!

    What an interesting profession you have had! You have done a lot of good for people, even if you were to have to shut it down at this point, although I hope that will not happen.

    I am sorry about your fibro diagnoses. But I am thankful that your doctors diagnosed you quickly and got you on some (hopefully) good meds.

    I understand the trouble of making friends and being lonely with this DD. I think no one really understands except those who have walked a mile in our shoes. And there are plenty of them here on this board. Hope you find yourself at home here. :)

  7. butterflydream

    butterflydream New Member

    You will have plenty of good friends here .

    Happy you found this board to share your thoughts and vent anytime you need too.

    Wish you well
  8. Shirl

    Shirl New Member

    Glad to have you join us. There are some terrific people here, and you are among friends!

    I have not been here in a while myself, due to situational depression, but am getting back somewhat to myself again.

    Just wanted to welcome you, and to say that 'we know where you are coming from!'.

    Shalom, Shirl
  9. jasminetee

    jasminetee Member

    I enjoy playing electronic Chess. It's great that you teach it to kids and adults through a Charity.

    I know what you are going through because I am too. I'm mostly bedridden now, I used to teach elementary school.

    Besides this Message Board there's the Chit Chat Board people mentioned above and there's also a Chat Room here that's very supportive and fun.

    You're not alone now. You found us. =)


    [This Message was Edited on 09/05/2009]
  10. HarleyRidingGal

    HarleyRidingGal New Member

    Hi Patrick!

    I, too just found this place last night and already feel like I have found so many people that understand the frustrations, pain, pain management, doctors, living, crying, laughing. Just in one day!

    I have fibromyalgia, degenerative disc disease, degenerative joint disease, reynauds, neuropathies...gosh the list gets long sometimes!

    I hope to make friends on here as well. It sure can be lonely out there when people don't understand why you have a disabled parking permit, or why you have to carry around bottles of pills, or why all of a sudden your mind goes absolutely blank when staring into the eyes of a good friend and can't remember them.

    I've been a professional musician for most of my life and nothing like trying to memorize a piano concerto and trying to keep the memory from just unplugging itself from the brain. My fingers want to move but the receptors to the brain somehow get just a little unplugged!

    I welcome you and as the others have posted, you do have a friend here and support here from the state of WA if you ever need it.

    I'm looking forward to the same.

    Blessings to you.

  11. ruti

    ruti Member

    I welcome you - this is a great site to get info on how to get better and get support.

    You need to learn as much as possible on your condition and what you can do to heal yourself - most doctors don't know how to help.

    I also have FM and have gotten better over the years (although you start with a lot of pain)
    To start, I suggest to take Magnesium. It can help with the muscels / joints pain.
    In your regular health clinic ask to check a breath test for milk sensitivity (lactose) and for fructose sensitivity. Check as many vitamins in the body that they can check for - especially magnesium, pottasium, B12, vit D, folic acid.
    Do you have intestinal problems?
    check for candida (not in the regular health care ) and stool tests for parasites and bacteria. I the U.S there are some especially good labs who find what regular labs many times don't find.
    One thing to find is the level of acidity in your stomack -it is hard to check. there are some home tests people posted on this forum. Some diagnose it with checking with ph papr in mouth and in urine.
    Not having enough acid in stomack can lead to parasites in stomack.

    if you start get a clue what you can do to lift the brain fog and the pain.
    The brain fog many times comes from toxins in our bodies from bacteria/ candida/ viruses/ leaking gut
    you can start by taking good multivitamines, probiotics (acidofulus) and
    multi enzimes.
    Try to get into active mode of solving your condition. It is possible!!!
    If you can try to test for viruses, bacteria.

    I hope you start feeling better, We are here for you


  12. loto

    loto Member

    I do have FM, and right as this moment, actually the past 2 weeks have been going through a MAJOR flare. I am in so much pain, so much that my meds are only helping about 20%.
    It's so hard, I totally understand what you're going through, and I, too, need friends! You'll find that this board is AWESOME!! The people here are so caring and supportive, because they go through the same things.
    hang in there, we're all here for you. Post as much as you like, it's also good therapy for me, as I don't have an "in person" support group.

  13. MsE

    MsE New Member

    This board is comprised of individuals who totally understand what you are dealing with and are thoughtful, compassionate, and helpful. They've bailed me out of CFS depression about my life on more than one occasion. Welcome aboard! MsE
  14. kdeenak

    kdeenak New Member

    This is the best place for you to be. There are a lot of people here who feel exactly the way you do, so you are not alone. I was in your shoes a few years ago and felt so alone. The doctors didn't care, my coworkers didn't care, and I was really feeling I couldn't handle life anymore--until I found this board and realized I WAS NOT ALONE. You will find a lot of helpful advice and just friendly words from people who get it.

    I myself am 33, but feel like I am 80 right now. I feel angry and desperate and scared.

    I would love to be your friend! Welcome!!
  15. rtistlady

    rtistlady New Member

    Hello Patrick.. I could use a few friends too.. After suffering with fibromyalgia for about 3 years .. i'm having a difficult time keeping up with friends and relatives and just feel like i'm holding them back. The only time i'm not in pain is when i'm asleep. I have to spend most of my time laying on the couch or in the recliner because it's even difficult to sit or stand. I'm on a variety of pain killers too including neurontin and percocet. Also using Prozac for the depression. My husband was just diagnosed with lung cancer and the stress of learning this has made life nearly unbearable. I'm normally a very outgoing and cheerful person.. but right now it feels like the world is coming to an end for me. Would be nice if we could support each other and I would very much like having you as a friend!

  16. PVLady

    PVLady New Member

    I have had fibro since my early 20's, ups and downs. I am now 59 and doing pretty well. I will give you my story.

    I know it is easy to be depressed and only natural when you suffer so many losses due to this illness. A word of encouragement, you can get better. There are many here who suffered for years then got much better. Each person eventually finds their own path. Most important is having the right doctor. Most of us here have gone through many doctors until we found help. Even Montel Williams saw over 20 doctors before being diagnosed with MS.

    Will we ever be 100%? Probably no, but who is? You need to learn to pace yourself and treat yourself as your own best friend. One the biggest challenges is no overdoing when you feel better - then you throw yourself into a flare.

    Many times fibro is secondary to other medical problems so it is hard to compare yourself to others sometimes. In my case, I had severe aching, pain, exercise intolerance, post exercise malaise, for a good 10 years before finding the right doctor.

    I was bedridden most of the time and it was terrible. Anyway, deep down, I knew I needed to break the pain cycle my body was experiencing.

    The first step in my recovery was treating the pain. I saw a doctor who put me on MS Contin. Within a week I was up and about, going to the show, going into my office, etc.

    I stayed on the MS Contin for 9 months and had to stop due to the side effects. When I started the MS Contin, I did not realize I had gallstones. It is contraindicated to take opiates when you have gallstones. I was so sick and could not eat. I lost alot of weight, then finally saw a new pain specialist to get off the MS Contin.

    He started me on Subutex which prevents withdrawal effects when stopping opiates. Low and behold, the Subutex controlled my fibro symptoms. My pain specialist has about 20 fibro patients on Subutex doing very well.

    Anyway, to get back to the story - in 2006 I was finally diagnosed with gallstones. The reason they missed the diagnoses for so many years was because I did not have the typical symptoms. My surgeon said many doctors miss diagnosing them.

    After surgery in 2006 to remove the gallbladder, I started getting better. Today, I still must not overdo, but I am functioning fine. I must get 8-10 hours of sleep and generally take care of myself. I am still on Subutex and some Tylenol. Ambien for sleep.

    One thing that really helped me was reading about EFT (Emotional Freedom Techniques). It is very interesting and helped me alot. There is a free 79 page manual on EFT you can download on the web. You do not need to buy anything - I printed out the manual and kept it with me in the beginning.

    Just keep coming back here and I know you will become very proactive to help yourself. Follow your own instincts.

    When you are feeling ok, try to get out of the house to see the world and other people. Even if you park the car and read a magazine. I used to pack a carry bag with my meds, water, magazines - and get out everyday. I just could not stand to isolate myself anymore.

    When possible, go to the movies during the day. Seeing movies is great for you. See cheerful, not depressing movies. Do crosswords, or Sudoku if you are interested. They are both great for your mind.

    Go to the library where you can sit and look at books that interest you. If you doze off, no one will bother you.

    These suggestions may seem silly but they all helped me alot over the years. They are just baby steps towards having a more normal life. Try to find a fibro support group in your area you can attend. You can check the internet or local hospitals. Sometimes they have support groups for people in pain, or with chronic illness if not specifically for fibro.

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