Hi I'm new here and have a few questions ...

Discussion in 'Fibromyalgia Main Forum' started by cressida, Apr 26, 2006.

  1. cressida

    cressida New Member

    Hi E1,

    I'm new here but not new to FM. I've had it for 6 years. I've tried all kinds of meds, but nothing really seems to help. Elavil helps for short periods, as long as I can sleep for 3 or 4 hours after taking it (otherwise it's terrible). I live in Canada where Cymbalta is still not FDA approved, but when it is, my doc wants to put me on it. I have little tolerance to any drugs so I'm a hard case. I also find that most drugs tend to affect me at work, so either I'm in pain and can't go to work or I'm drugged and I can't either. I just wish I could find something that helped me to function and that I could be productive as well.

    I am wondering how many people here are on disability from this and how many still work. I'm having so much trouble trying to work, even though I am on part time disability. I just sometimes wonder whether I should be trying to attempt to go to work at all (since I'm as unreliable as the 'disease' is) and get a chance to really find something that could work for me instead, without having to worry about work for the time being. It's such a difficult thing to go through, but I understand a lot about it now and don't feel so bad in knowing that sometimes there's nothing I can do, and I don't beat myself up over it 24/7 the way I used to.

    Has anyone found a better much better quality of life through taking certain meds? Oh how I wish!
    [This Message was Edited on 04/27/2006]
  2. NyroFan

    NyroFan New Member

    cressida:
    I only speak for myself, but one day I knew I could not work anymore. I went to the doctor and although he had just diagnosed the FM/CFS he said i was suffering from physical exhaustion. He put his arm around me and said 'It's time to stop working'. So, I am on Social Security.

    Meds that help me are usually Percocet, Ultram and Elavil.
    I am on a little morphine now to get me over a rough flare, but that is limited to four days.

    I hope you are able to straighten things out.

    Welcome.

    nyrofan
  3. jbennett2

    jbennett2 New Member

    There are many here who find that supplements help them immensely. The top one is magnesium. There is also MSM, CoQ10, B-complex, C, and others I can't think of. There are also herbal products that can help too. I'm sure someone will suggest some.
  4. sop28

    sop28 New Member

    I didn't have a choice, my body just told me your not going to work any more. I have fm, which I can usually deal with, but was recently dx w/ cfs. I collapsed at work and have not been able to do much at all ever since.

    As far as meds, I take cymbalta(which does help some with the pain), trazadone at night for sleep(i sleep through the night but still wake up exhausted).

    A lot of people here take various supplements. I'm waiting until I see my new doctor to decide what is best for me. At the top left of the screen you can type "supplements", or something like that and see what comes up.

    hope this helps, good luck and welcome!

  5. suzetal

    suzetal New Member

    I had to stop working in 2003.Worst day of my life and I would do anything if I could go back into the work force.

    Sue
  6. Jordane

    Jordane New Member

    Hi Cressida,
    Nice to meet you!!:>)
    I had to stop working last year. Just couldnt push my body any farther.
    That last few months were hell!! I am in bed a lot right now.Going thru a really rough spot.
    Have filed for Disability. Now its just the waiting game!

    Take Care!!
    Jordane
  7. cressida

    cressida New Member

    I didn't mention that I've tried absolutely EVERYTHING. Chiropractic, Accupuncture, adrenal supplements, magnesium, and a ton of vitamins, minerals and herbs as well as 3-lac and various candida supps. I've spent thousands in trying to find the right mattresses, mattress pads, etc. and this has become a very expensive illness! I have done juicing and taken barley grass. I have a hard time swallowing pills so I have to mix everything in a blender (and tastes like crap) and cannot take pills at work, etc., so that has been hard for continuing taking regular supplements.

    At this point, I feel as though I've tried everything and I'm so confused I just want to find something regular that works somewhat and get into some kind of routine.

    Between spending years working part time with no disability payments and struggling to find something to help me, I'm absolutely exhausted. Thank heavens I was finally approved for part-time disability, but I wish I were on full time. I have a doctor who doesn't seem to think I should stop working altogether, because in his opinion when people do this they never go back. I just want to GET BETTER and go back, but I don't see this happening any time soon.

    I'm just overwhelmed, to say the least.

    Thanks for listening :)
  8. suzette1954

    suzette1954 New Member

    It was the hardest decision I think I ever made. I loved my job and was very good at it. the 1st yr I was home, I thought I would go crazy. Everyone from my work went on with their lives and here I was home.

    I have a wonderful hubby who supports me completely.

    Suzette
  9. ckzim

    ckzim New Member

    I've been on disablity for almost 4 yrs now, it took almost 2 yrs to get it.

    A couple of things you might think about is...you have to have a doctor, two is better...to stand behind you, supporting your claims of FM...they have to do paperwork, testifying that you have had/do have this FM and are NOT able to work. They have to fill out quite a few forms, stating what you can and can't do, physically, mentally.

    Not able to work means...that you are not able to support yourself any longer doing this job, and that there is no other job comparable in wage, that you ARE able to do.

    Example: I was a telephone operator...I made a decent wage.
    The state attorneys aganist me getting the disablity, suggested baby sitting...things of that nature.

    The Judge disagreed, as that was not Comparable to what I was making. The judge told these attorneys, unless you can name me a job, that is consistent, of what she can do now with FM, and pays the same amount, I will be favorable to her.

    The state attorneys then suggested...party stor cashier jobs? As I also worked as a cashier in a groc store at one point of my life.

    The judge again said..."Wouldn't she have to lift over 10 pds on that job? The answer of course was yes...

    This went on for about 2 more times, and then the judge said Enough...there isn't a job out there, that she can maintain with her health, nor is the wage consistent with what she was making. That there wasn't a employer out there that would be able to accomadate my disablity.

    You really have to have all your ducks in a row, so to speak.
    You have to give a written testimony of when this all started, what happen? what doctors? what meds? what xrays?
    And I do mean detailed proof, of what you have been doing. Mine was almost 15 pages long.

    Mine all started in 1988, I showed I had been working steady up to when things started happening...taking medical leaves,(FMLA)..how long those leaves were? What was the outcome?

    I had even switched jobs, in those years, again proving, I was struggling to work. Along with doctor documentaioin..I also included my bills, and how far they were behind, house in foreclosure, etc.

    He did take into consideration my age...which at that time I was 43, which any doctor or judge take as very young.
    But he also looked at when this first started happening to me...I was like...without doing the math ...lol...34 yrsold???, so he saw that I was struggling for a long while with this, and plain and simply couldn't do it anymore.

    I don't know what state your in, or if it is any different for each state...but here in Michigan...you have to be off work for at least 6monthes, before you can even file.

    I don't know how old you are, but even with me in my 30's the state attorneys pointed out that it was pretty young for a person to get disablity for the rest of their life?. Their point? Things can change.

    But being that this judge was very informed on what FM was, and I gave a full write up of what it was on my written statement, he knew this wasn't a illness that was going to change with time. I would always have it.

    I hope I didn't get to long winded for ya, but I know how scarey it is, and I wanted to get you a clear picture.

    Anyone who has won...all have different kind of judges, different circumstances, etc..but one thing that is clear, you have to have a doctor who agrees 100% that you are disabled, and wiling to give a detailed document of WHY.

    I hope this helps some...
    KathyZ



  10. mjwarchol

    mjwarchol New Member

    Hi:
    Welcome. Have you ever tried Ambien? I have used it for sleep since 1993 and it has improved my sleep ability tremendously.

    I worked in healthcare and I was diagnosed in 1982. I just had to quit work a year ago due to this, and have filed for SS disability. I was denied and have just begun the long appeal process.

    When I was first diagnosed I was put on Desyrel at night (it was the gold standard at the time and is still greatly used today).

    Hope I helped. Best of luck.

    M J

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