Just Diagnosed w/ Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by julieann29, Mar 19, 2010.

  1. julieann29

    julieann29 New Member

    I was just diagnosed two weeks ago. My doctor started me out on Lyrica 50mg twice/day and my doctor is increasing my dosage to 75mg/twice day. I am just waiting on my mail order prescription. My question is I started Nutrisystem diet program a last Monday because I am overweight. I wanted to start exercising so yesterday I walked 1 mile. This morning I woke up with terrible pain all over and missed work, although I have been taking my initial dose of Lyrica. Is this normal? I thought walking would be low impact and not hurt me so much. My other question is I'm worried about being able to continue working. I am a locomotive engineer (drive trains) for a class 1 railroad and have been there 18 years. I don't have a schedule and am on call 24/7. The long train trips sitting in bad seats are starting to take a toll on me as well as low back muscle spasms. I am so worried about having to go on disability because I know the railroad will not make concessions for me. It is a good job and I'm scared because of the economy and I consider myself fortunate to have this job. As I said, Any good advice for a newbie? I'm just beginning to learn about Fibro so please bear with me.
  2. kat211

    kat211 New Member


    I can only tell you what has worked for me. We all experience this DD differently. I started walking a couple of blocks at a time and have built up to between 1-2 miles a couple of times a week walking around the dog park with my dogs off leash. I will not walk them on a leash because it is too much (I have a great dane and a st. bernard). I also purchased an exercise ball and a resistance attachment that I use a few times a week when my son gets on me to exercise. I have lost 12 pounds in a short couple of weeks. I have not done anything extreme at all. I have also switched my diet to all organic whole foods and make sure I make fruits/vegs the main dish and not the meat/fish. I tried Lyrica, but was allergic to it. I now take flexiril 1-2 times per day for the pain. All of these changes have brought my pain from a 9-10 and having at least 3 days a week in bed and very limited activity on good days. (I started the diet changes, then the exercise, then the flexiril.) I am now on generic ritalin because I am in grad school and I can't focus on what I am doing (been on it since Tuesday) and I am trying to find a job.

    Since you have a job that you have to sit a lot for, I would suggest trying a memory foam seat cushion.

    Above all, stay positive. Give the Lyrica some time and see if it works for you. Don't make any rash decisions regarding your job until you know if the meds work.

    Good luck.
  3. herbqueen

    herbqueen New Member

    Experiment with diet- try a gluten free /sugar free whole foods diet and see if that helps. Exercise is critical. Good sleep is criticl. Don't stress-learn meditation. If you live in tick endemic area-get tested for lyme- go on antibiotic or herbal protocol for lyme (i.e Samento- TOA free cat's claw-Cowden protocol for example).

    I don't want to scare anyone, but my fibro progressed to neuro degen/ MS symptoms and was likely lyme all along. My inititial onset was intense up the back of the head headaches/eye , stiff neck pain 12 years ago.
  4. JLH

    JLH New Member

    A locomotive engineer! Wow! My father-in-law was a locomotive engineer for the railroad for 45 years! He was sooooo fortunate--he was healthy and worked that long without missing one sick day! That would have been so impossible for me! LOL I retired with 30 yrs service with many, many sick days! Too many, according to my boss!! LOL

    If you are on call 24/7, you might have a problem taking a lot of the different meds for fibro. The different meds do not bother me now because I am retired and can sleep in late and take as many naps during the day as needed.

    I am currently taking Neurontin, an older med than Lyrica. When I took Lyrica, it made me so sleepy and foggy-headed during the day that I couldn't stand it. I hate that drugged-out feeling and just sit feeling like I'm in a daze all day long. That's how I felt taking Lyrica, even when I was started out on a lower dose than you were. But, as everyone will tell you, the different meds affect all of us differently.

    I had been on Neurontin all along and just want to try Lyrica--hoping it would be better. But after seeing the way it affected me, I went back to Neurontin.

    I also take Cymbalta, 30 mg in the AM and 30 mg in the PM. For fibro, a 60 mg dose is what is recommended, and normally taken in one dose; however, when I did that, it made me feel like the Lyrica--in a fog all day. After the doctor split the dose up into two doses that day, it worked much better--no fog!

    However, since both of these drugs help fibro, but do cause drowsiness for most of the people who take them, you may not be able to take them and be alert enough to perform your job if you should be called out at any time of the day or night.

    I also take a muscle relaxer at night to help me sleep, but is also for my pinched nerve in my back, called Zanaflex. It causes extreme drowsiness, of course, which is to help you sleep. So again, if you're on call, I don't know about it for you.

    One thing that you might want to do is get a sleep study done. Getting the proper sleep during all of the sleep phases at night is important for fibro. I did not think I had a sleep problem until my study. I found out that I have obstructive sleep apnea. I don't get any REM sleep, wake up for seconds at a time all during my sleep, and snore! All was news to me!! I now sleep with a CPAP machine which has been a life saver!! Not having the proper sleep can cause you to wake up feeling tired, weak, like you've never slept, etc.

    You might want to consider trying to make yourself as comfortable at work as possible, since your employer doesn't care--it's no big deal to them, they won't spend any money out of their budget for anything for you, and they may think that you are no longer able to do your job, etc.

    Like someone said, you may want to invest in a memory foam seat to sit on. You could also buy what Wal-Mart calls a "travel pillow". I bought one there a few weeks ago. They are small, $4, and fit right behind the small of your back perfectly. It would help your low back and upper back feel better on long trips. You could pack both of these pillows in a large tote bag and take with you to work, if you are allowed to take anything on your train.

    When you get home from work, you begin your own therapy sessions! Your walking, and perhaps if there is a pool close by, water aerobics is the best thing that I ever tried! They are low impact in the water, and the water is sooooo relaxing!!

    When I came home from work, and my neck and shoulders were always hurting (I also have cervical, thoracic, and lumbar spine issues), so I would put a bag of frozen peas on my neck and another ice pack between my shoulder blades to help the pain.

    I would lie down for a little bit before I started on my evening chores (supper, helping the kids, etc.) and then right before bed, I would sit with a heating pad on my low back.

    You might also want to check into a pain med called Ultram or Ultracet, which is a NON-narcotic med., if Advil or some of the long-acting over-the-counter pain meds do not help you. But, you also have to use what will pass a urine test at your employment in order to work at any time of the day.

    I hope you find a way to manage all of your symptoms and still be able to continue to work. Maybe your doctor can advise of of some natural ways to help.

    You are right when you say that you are fortunate to have a good job in this economy. Since you have 18 years in, you might want to try and make it as long as you can. I don't know how far you are away from an early retirement, but it certainly would be a shame not to make it.

    I have had fibromyalgia and systemic lupus for a lifetime. The doctors believe that I had signs of it when I was in grade school. They called it growing pains then, and some docs thought I had MS then, and some didn't have a name for it. I remember being in pain every day of my work life. I also suffered from severe migraines then, and other problems. The last ten years of my employment, I started having heart problems--I think it was the lupus kicking in, and I also developed kidney issues. Right around the time I decided to take early retirement, I developed diabetes. It was my heart issues that forced me to retire--I didn't want to die of a heart attacked on the job--I had 3 kids to put through college at that time!

    Anyway, I hope you can come up with a lifestyle that's right for you and be able to continue your employment, which will give you the medical benefits that you need! If you apply for SSDI, you will have to wait 2 years (I think--I'm brain-dead today!) before you can get Medicare.

    Good luck,
  5. gb66

    gb66 Well-Known Member

    Welcome to the board. I wonder if it's possible for you to work on a regular shift. That would really be helpful. You could take your med's only before going to bed if some of them make you too drowsy to work comfortably. Maybe the railroad would consider this due to your disability. GB66
  6. stacyg

    stacyg New Member


    You are young like I was when I got Fibro. The pain from the walking is because it's too much to soon. Any time you start a new exercise program start slow, even if you feel ridiculous for starting so slow. Your body won't hurt so bad if you start with a quarter of a mile & work your way up. I learned that just like you did. I also have weight to lose. Don't get discouraged if the progress is slow & don't let anyone tell you you should be doing more. Your body was telling you a mile was too much to start with. Keep working as long as you can but keep in mind you may have to go the disability route. I did. If you do, use a lawyer that doesn't get paid unless you win & don't try to go it on your own. I filed the first time on my own & was denied. I went to Slepian & Associates in Phoenix where I live immediately after & I wished I had from the beginning because they know what they are doing. I was denied again. It went to court & I won. It took over 3 years for the process. But don't give up!! As far as the medicine, maybe it will work maybe it won't. Everybody is different & needs different things. I unfortunately am allergic to Lyrica but there are many many options out there. Most important of all, try not to get discouraged!! Make sure you have a good support system, like family & friends that care about you and this site where others have the same disease. I wish you all the best.
  7. julieann29

    julieann29 New Member

    I am so impressed w/ all the posts I have received. You guys are great!In case I haven't mentioned my age, I am 42 yrs old, married w/ no children. To answer some of your questions I cannot do anything about my schedule because of union agreements. There are times I can hold a scheduled job (know times I go to work and days off) and then there are times I am going to be on call 24/7. I have FMLA right now for intercystitial cystitis, but it will run out the end of March. What I would like to do is take a short time disability leave until I can get my meds and pain under control. If the railroad finds out about this they will take me out of service and have me go to their company doctor. I have also heard if they find out you are taking antidepressants or have sleep apnea they will take you out of service too. I take 225mg Effexor/day, for 10 yrs. I need to go to my doctor to get something else because I've been really down in the dumps for some time. When I was about 9 or 10 yrs of age I also had all kinds of tests for back pain and I was also told I had growing pains. I have had back pain all my life and had a double fusion surgery in 1994. For the last year I have had terrible lower back pain, numbness in hands feet and arms, migraines, burning pain in my upper back and neck and in the morning I experience slight tremors in my hands and my head seems to go back and forth just a little, but then it goes away. I have had MRI of back and brain and nerve test. I also had a blood test and they took 4 tubes of blood. (I don't know what all they tested for.) These tests show nothing abnormal. Just two weeks ago I was told I have Fibromyalgia. It's been hard on my marriage the last few months because my husband hints that I'm lazy. I try to do as much as I can, but my pain is getting worse. Today I can feel the pain going up my neck and into my head. I am doing everything I can to fight off the throbbing headache I know is coming. My goal is to get 20 years in at the railroad, but I can't keep working w/ all this pain. I have talked to some union lawyers and they can help w/ railroad disability since I don't pay into SSI. The railroad has their own retirement system. I'm just trying to get it under control so I can make it just a few years longer. Thanks for all the advice.
    [This Message was Edited on 03/20/2010]
  8. julieann29

    julieann29 New Member

    Goatwoman, Congrats on losing 45 lbs. How did you do it? Did the losing weight help with your pain?
  9. loto

    loto Member

    I just now read your post.

    I've only been diagnosed for almost 2 years now.

    First I want to say--log into this site daily! It has helped me TREMENDOUSLY!!!! Everyone here is so helpful and supportive!

    And, I have to agree with what other posters said to you--start excercising lightly and work your way up.
    And, I have found that taking vitamins, mainly vitamin D helps me a lot also. Did your doctor do blood work to check out all of your vitamin levels and iron level, etc? If not, you might want to ask for that. Make sure everything with that is at normal levels.

    I wish you the best!

  10. robocop1

    robocop1 New Member

    What you said at the end of your comments is so important. "try not to get discourged: and "make sure you have a good support system, like family & friends that care about you"......I get discourged some days, my family & friends do support me but what they say tells me that they don't understand what I am going through...I do believe that this site where others have the same disease is a huge help and I am so glad that I found it!!!!

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