hello! new to the board- need info on having both fibro&lyme

Discussion in 'Fibromyalgia Main Forum' started by debora8302004, Sep 3, 2005.

  1. debora8302004

    debora8302004 New Member

    my name is Debora and i am a mother of 2 daughters, 1 is- 13 and the older just turned 1. we live in rural NY. i have been living with fibromyalgia for 10+ years. thought i have learned a few tricks in making it more livable, i still struggle with it almost every day. i found that there is a fine line between to much and too little activity and if you fall short or long you pay for it. i also found that most doctors are clueless in treating it/ thankfuly i finally found a great one! i also discovered that there are no meds. that are going to take away all the pains and suffering, some help, for me Topamax and flexeril, and OTC Advil Liqui-Gels take the edge off. i think one of the best investments i made was a Memory Foam Mattress for my bed. there are no pressure points on my tender joints, muscles and bones, after the 1st night sleeping on it i woke without pain. i could not believe it, usially being in and getting out of bed wore the worst times of my day but to my suprise it was not!!!! - i highly recommend trying one. they can be a bit costly but well worth the investment.
    i am looking for some info on fibro and lyme disease. i have just had lyme disease added to my diagnosis list and i was wondering if anyone else out there has both. i am in so much pain, my fatigue is so bad and nothing is helping- my sleep is so off- i go from sleeping all day to today being up all day and now it is 2:30 am and i just can't sleep.
    i realy thought i had things figured out with just the fibro, i leraned how to live with it. i accepted it for what it was and maid the most out of my life while liveing with it, but now i feel like i am starting all over. my big problem is the desired treatment for the lyme is antibiotics, the 1st one the dr. but my on made me even sicker, the 2nd one did not due to long tern former use when i had a severe long term infection. so the desired treatment is not an option. i am very frustrated and have 2 children depending on me for their care. any advice???
  2. elsa

    elsa New Member

    Welcome to the board! You'll find all kinds of support
    and help here. I'm sorry you feel like you're back at the
    beginning with these illnesses. Many people have dicussed
    lyme disease here , so some good imformation should come your way.

    I don't have any experience with lyme, so I don't have
    any great ideas to share with you. Have you tried the
    search bar on top left. If you type in "lyme" you should get a big response to read over.

    I hope you start to feel better soon. You'll find there are tons of generous members here who love to share
    what they know and what helps them feel stronger. It's a
    great place to "vent" too ... LOL

    Take care,

  3. sickasadog

    sickasadog New Member

    Hi Debra.

    I was just recently diagnosed with chronic (late stage) neuro lyme disease after being dx'd with fibro and CFS for 10 years. My dr feel the lyme is the main source of my problems and the fibro is secondary to the lyme- or happened as a result. I would definitely say to make sure you are being treated by a lyme literate MD because many Fibro and CFS "experts" profess to know lyme when they really don't, which is shocking to me since many people w/ fibro and CFS get diagnosed with lyme.

    There are many messageboards for lyme out there. I post on them as well since there are more people w/ the disease there. Just do a google search as I can't promote any other boards here.

    Good luck in your recovery. I just started mine a week ago- doxycycline and plaquenil. One very important thing to know........ you WILL feel worse when starting on the antibiotics. It is normal and do not stop them because of this. I am surprised your dr did not speak to you about a herxheimer reaction, which simply means that once you start attacking the infection, your symptoms will flare/get worse before they get better. I am having a bad herx and I was actually told it is a good sign and more confirmation of my lyme diagnosis! There are also several things you can take to reduce the herx like drinking lemon water (too tired to explain everything, but will later).

    I totally understand what you mean about feeling like you "finally had it all figured out". As I said, i have had a diagnosis of fibro and chronic fatigue for almost 10 years and could not get any drs to listen to me and even consider lyme, so for 5 years, I gave up searching for answers and accepted that I have an incurable illness that I will just have to live with. I finally got so sick that I had to leave work, this time perhaps for good at least for now, so I began pursuing again, and i finally got my answer. I am still in shock and having trouble accepting that I have lyme since had I been diagnosed sooner, i might not have suffered all these years and now I have possibly irreversible neuro damage. But after doing more research on lyme, goinmg on the message boards, and meeting others in a support group, I finally feel that the diagnosis is right as i felt exactly like them and Lyme explains almost everything that has gone wrong in my body, even more so than the CFS.

    Good luck with your recovery. Lyme is a difficult illness to treat, but the fact that you have a definitive diagnosis which has been studied much more extensively than fibro and cfs combined, it a step in the right direction.

    Take care,
  4. sickasadog

    sickasadog New Member

    bump for debra
  5. JLH

    JLH New Member

    Welcome to our board! Glad that you found us.

    Are your daughters 13 yrs and 1 year old? I don't know if I read it right or not! If so, it's going to seem like you are raising two separate families!! I know it's hard to be sick and care for a little one, like your 1 yr. old.

    I am 54 and have 2 daughters and 1 son, but they are all adults now and out of the house; however, I still have 1 at home to take care of--my husband! He's as bad as a child sometimes, I think!

    When you get time, you there is a bio in your profile to complete -- with all the postings, it's easy to forget what you have told us about yourself in your very first post!

    I don't know anything about Lyme to tell you. I leave that for someone else to come along and address.

    The fibro meds that I have found to work best for me are: Cymbalta, Neurotin, and Zanaflex at bedtime. I also have Lortab to take for my back pain--but it doesn't really help my fibro pain and fatigue. (I have a multitude of problems--see my bio.)

    About your sleep problems ... have you ever had a sleep study performed? If not, you might want to consider talking it over with your primary care doc. A lot of us have sleep apnea.

    I do and I now sleep with a CPAP machine as well as oxygen and sleep soooooooo much better! A better night's sleep, with quality sleep, helps you to not be in so much pain the next day, and not quite so fatigued.

    I have heard a lot of people here recommend the memory foam mattress toppers as well as the memory foam mattresses themselves.

    I have an "eggcrate" mattress topper on my bed now and I am thinking about the memory foam toppers to replace it.

    Did you try out one of the mattresses prior to purchasing it? I would be afraid to invest in one in case I didn't like it!!

    Anyway ... I'm glad you like your and it helps you!!

    The only other advice I could offer you now is to keep a good heating pad. Mine is my best friend. I'm also glad that we have an excellent hot water heater, because I LOVE those long hot showers, too ..... that hot water really soothes my aching shoulders and back!

    Glad you found us and hope to "talk" with you a lot in the future!!


  6. sickasadog

    sickasadog New Member

    bump for more info for debra
  7. jbennett2

    jbennett2 New Member

    the same as sickasadog. I take Plaquenil, vibramyacin and clarithromyacin. I was just diagnosed with the Lyme two days ago. My daughter also has both.

    Like sickasadog, I also belong to Lymenet and find that there is an abundance of information to be had out there. I actually joined that group before the diagnosis when someone suggested to me that I might also have Lyme.

    Do you have a LLMD? I hope so, they can make things much easier. The one I have is excellent about returning phone calls, even on weekends, and answers his phone himself if he is not with a patient.

    Good luck with your treatment.
  8. sickasadog

    sickasadog New Member

    i forgot, are you being treated by the FFC or a LLMD? I wish you good luck in your recovery. Does your dr or LLMD feel that Lyme is at the root of your symptoms??? Mine says I have chronic lyme and secondary fibromyalgia

  9. sickasadog

    sickasadog New Member