• 4 months ago

    DIagnosed with Fibro Two Months Ago

    Hi, I am new here and this is my first post and not sure where to begin, so here goes. Over the last year I have had chronic pain from the shoulders down to my toes. In the beginning I didn't worry too much about it as I had started a new job and thought my body just needed time to adjust.

    A little about me first I guess. I am a 53 year old female, a little on the heavy side but have been losing weight on my own, but could stand a little more. I have always worked a physical job, for over 20 years I worked as a CNA in the hospital, so that involves a lot of lifting, etc. I have also worked retail over the years and for the last year and a half that is my current job. When the pain began early last year, I just assumed it was getting use to standing/walking on concrete floors all day and lifting a lot of heavy boxes though out my shift. Well over time the pain has only gotten worse and after talking to my NP about it over many months, she did the tender point test on a very bad day, to the point I told her to quit touching me because I was hurting so bad. So, I was diagnosed with Fibro a few months ago.

    Due to my health seeming to get worse from the pain and not getting any sleep because of it, my NP put me on Elavil starting me at a low dose and I am now built up from 10mg to 30mg at bedtime. I also take Alka Seltzer for pain and at one point was taking so much, my body was full of bruises from so much aspirin. I was told to cut it back to no more than 2 times a day as I had been taking it 4 to 5 times a day. She had put me on Gabapentin to help with the pain and after 2 months I quit taking them because they did not help at all. So, I am just taking the Elavil and Alka Seltzer for pain. The aspirin seems to take the edge of the pain off but not take the pain all away.

    I also have arthritis in my knee joints and I know that isn't helping. I have also noticed over the last 5-6 months that if I sit in one spot too long and get up that my left leg does not want to go. My mind is telling it what to do, but being able to put pressure on it because of the pain and lack of strength in it, it takes me a few minutes sometimes to get it going.

    One of my concerns is, is this really Fibro? It seems that the pain is never completely gone, my level at its best is usually a 2 and at its worst a 10+. Over the last 2 weeks with today being one of those days, I was actually feeling good or so I thought and my pain suddenly jumped from about a 2 to a 10+, no warning, just boom!!! I was all but in tears but was at work working the register and had to continue to manage a smile and be pleasant as the Assist Manager was on break. As soon as she came back she noticed a change in my behavior and asked what was wrong and I told her that suddenly the pain became almost unbearable. I went and sat in the office and cried for 5 minutes because of the pain. One night last week when I got home from work the pain was just as bad and I almost drove myself to the ER to see if they had any better answers than Fibro being the issue. But it was the fear of maybe being kept there that kept me from going. I was eventually able to sleep and woke the next morning with my pain being about a 5-6.

    My NP says with taking the Elavil, I should not be having this much pain. So I was wondering if others may have experienced the same things as I have shared here? Thoughts appreciated.

Responses

  • 4 months ago

    RE: DIagnosed with Fibro Two Months Ago

    No way is Elavil going to stop you from getting some fibro flares. I was diagnosed early in 2004, so that was 13yrs ago and I have tried it all. I will tell you this much, you will need to make managing your condition your number one priority. It sounds to me like you do have fibro. I'm 64, almost 65 and your case sounds like my history. I went through the first couple of years without a diagnosis but was pretty sure I had it as my mom and older sister had been dealing with the pain for several years and my sister had been diagnosed with fibro.
    I also have arthritis in my knees and I get regular Synvisc shots for it. The first thing I did after diagnosis was do all I could to get rid of any pain that I could actually assign a cause to.
    So, now, advice on what has worked for me and what hasn't. I guess I will start with where I am now.
    First, my prescriptions; I take a 300mg Tramadol HCL ER once a day. I try to take it later in the day because I have my worst pain in the morning and need it to be at peak effectivity then. I also take 100mg of Trazadone at bedtime to help me sleep. Right now I am taking an imipramine (50mg) with the Trazadone for depression. I take prescription Folic acid (1mg). Those are the only prescriptions I take for the Fibro. I have high blood pressure and diabetes, both of which are well controlled with meds, diet and life style changes.
    I also take a cocktail of OTC pain meds. I take 2 regular strength (200mg) Ibuprofen and 2 extra strength acetaminophen (500mg), with breakfast. I repeat the same cocktail later in the day if I need it, and I almost always do. I found this cocktail regimen on my own due to extreme and desperate need, and it worked!! Imagine my surprise!! I have never heard of anyone else doing this but synergistically the 2 meds work very well together. I never have to go any stronger with the dosages but could occasionally without too much fear of damaging myself because the 2 drugs work differently and effect different organs in the body. As a CNA you are probably already aware of the bio logistics involved. My NP (who is absolutely great) has assured me that it is safe to continue with these meds for the foreseeable future. Of course I have my liver and kidney functions tested regularly. I also take a multiple vitamin, a magnesium and a vitamin D3 daily. I have been on this regimen for 2 yrs now and I am functioning the best I ever have since diagnosis. So, on to life style changes.
    I got a lawyer, got disability and quit working. I was never able to stand the pain while working. Just too much stress, physical and emotional involved with working. Let me stress this: STRESS is your enemy. Learn to use meditation, imagery, breathing exercises, cognitive functioning, the whole ball of wax...it works!!
    It helps greatly to find something you can love doing. I started playing a guitar and singing. I never had been able to do music and I had always loved it. I participate and help lead a weekly jam session and I go to the local seniors dances. I very rarely dance because it will likely cause a flare, but I love listening to live music. Even just playing and singing can cause a flare if I'm not careful about sitting in one place to long. That is another thing to watch...don't do anything for too long at a time. Work for 20min at a time, and don't sit in any one position for too long, get up and stretch regularly. It really does work. Stretching exercises in the morning every morning are great too. Gently though, very, very gently. A positive attitude is the most important tool. This is my mantra, I know it by heart:
    Some days are better, Some days are worse
    Look for the blessing, Instead of the curse
    Be positive, stay strong, And get enough rest
    You can't do it all, but you can do your best.
    I have gone thru the terrible, terrible flares. I've suffered thru the debilitating despair of the diagnosis. When you are told you have an incurable lifelong pain condition, well...that will set you back a ways. But you can live a good and even enjoyable life if you will just do the hard work of managing it. Most people I know who have the disorder don't even try, and I gotta tell you...I don't understand that.
    I guess I don't have enough room to tell you all the things I tried that didn't work...just take my word for it, I've tried everything and nothing else worked for me. I tried all of the approved fibro drugs and they either didn't work at all or had too many side effects. I also tried massage and warm water therapy. They both help during a flare but they have to be repeated so often that it becomes more bother than worth. At least it did for me.
    Oh, I almost forgot, get a GeneSight test done so you don't waste 10yrs searching for the right combination of drugs. Your NP can tell you about it, mine did.
    Gentle hugs, hope I didn't bore you to death. Once I got going I just didn't seem to be able to quit. lol
      • Hi! Just wondering what the GeneSight test is??
      • 2 months ago
        The GeneSight test is a DNA test that will tell which drugs will work best for you, which ones will work, but maybe not as well, and which drugs you will get no benefit at all from. Hope that all of this helps some. Please keep me posted. Have you tried the 2 regular strength (200mg) Ibuprofen and 2 extra strength acetaminophen (500mg)? I'm really interested in knowing if it works for you as well as it has for me. The categories of tests I was tested for were analgesics, anti-depressants, and anxiety pills, and if I remember right anti-convulsants.