Shhhhhh! I had a couple weeks pain free!

Discussion in 'Fibromyalgia Main Forum' started by Tattoopixie, Mar 19, 2003.

  1. Tattoopixie

    Tattoopixie New Member

    Okay- I guess that this is just the way it goes. My Dr had increased my neurontin to 600mg at bedtime, along w/10mg flexeril, & 100mg zoloft...I had no pain in my arms or shoulders for about 2 weeks-however my arthritis in my knees got worse (yes, I am weird!lol). It was so nice not to be in excruciating pain for that long.

    Then- I got my period & now my arms are knotting up, my back is killing me, the pain in my ribs is back...

    Does this happen to anyone else? Did I just use up that 'honeymoon' time w/my med change?
    I was even going 'gee, maybe the Dr was wrong & I'll get better now...'
    Am I just going through denial (deja vu)????

    I guess the question I really want answered is if it's normal to have such a good amount of time (2 wks was alot for me to be pain free) after a med change & does it always eventually lead back to pain? Do we all go through this?
    Sorry for rambling- am a little stressed!
  2. sofy

    sofy New Member

    I thought you were still taking klonopin at bed time. Am I wrong? Are you only using supplements now? I have resisted the temptation of klonopin for quite some time but the ZMA only helps a little and exercise of anykind jazzes me up and then I cant find the off switch and dont sleep. I will be dead tired but awake all night. I'm always asking myself "can I do one more thing and not have to pay the price of no sleep" Geeze!!!!!!!!
  3. Maggieann

    Maggieann New Member

    I can't answer the question about periods and more pain because i am 55yrs young, and i haven't been pain free for months now, but can i ask what type of medication is Neurotin, is it anything like Amitriptyline, because i am looking for anything that helps, and at the moment, i am taking Amitriptyline at night 100mg which helps me to sleep sometimes, but everything else for pain has not worked, and i read somewhere that anti-inflammatory tablets do not work for fibromyalgia, any info would be helpful.
    God Bless
  4. VickyB

    VickyB New Member

    You are not weird!! I had the same thing happen to me with the Neurotin-I had a couple of weeks that were pain free. Then I was hit with pain all over my body. I could not continue with the Neurotin. I am back in terrible pain all the time but do not know what else to do?? Good luck to you. I hope you find something else that works for you!!
  5. Tattoopixie

    Tattoopixie New Member

    Thanks for the replies!
    Mel- I wish it were that simple for me. I tried to go back to strength training several times & it is not good for me now as my main pain is in shoulders/arms/neck- Dr said STOP. I tried joining a gym & swimming in a heated pool-again- body cramped up. Tried doing tae bo again & again-bad news. So now I walk as much as I can & do yoga.
    As for supplements- I have tried a few w/no results. I am very short on cash as I am single w/2 kids & we live on my son's SSI ($720mo)- I can't afford to buy things just to test them out at this point. However, I do have state covered medical which will cover all RX's from my Dr.
    You are very lucky to be able to obtain results & only have to take klonopin. I wish we all could be that lucky.

    As to the rest of the replies- thanks, it's good to know I am not the only one. I have gone back to neurontin/flexeril/zoloft combo & guess I will just have to live w/the fact that I never know when I will fall asleep. Now if I can just find the right words to explain this to SSI that this is one of the reasons why I can't hold a job at this time....
  6. starstella

    starstella New Member

    who has not been diagnosed with FM but has chronic back pain. It usually gets worse with the onset of her menses. I don't understand the physiology of that but your post caught my attention in that respect. Congratulations on the pain free (relatively) period! Did you feel weird--like something was missing--- because you weren't in pain?
  7. VickyB

    VickyB New Member

    I felt weird when I was taking the Neurotin and not having as much pain but that is when I noticed how exhausted I was all the time.
    I hope you have many more pain free days!!
  8. Tattoopixie

    Tattoopixie New Member

    Sorry- missed the ? on neurontin- it's an antiseizure drug that also has nerve pain benefits. I had been taking 300mg at bedtime for quite a while & the last flare I had I had no strong pain killers on hand so I used my neurontin 300mg 3x a day along w/ my celebrex 2x a day. My Dr increased my neurontin to 600mg at bedtime daily along w/adding 10mg flexeril at bedtime. That was done to help me sleep, but it still did not knock my sorry butt out! It did, however, make my neck/shoulder/arm/etc pain go away for a couple of weeks. I had a feeling it wouldn't last & it didn't.

    Yes, I did feel like something was 'missing' & it made me feel kinda guilty & nuts. However, I don't know if it's the increase in neurontin that made my knees hurt so much worse than they were before. Maybe I will experiment w/going back to a lower dose of neurontin for a few days & see if my knees get better? Hmmm....

    It's just such a bummer that we can think we found 'the answer' to this pain but it never lasts.....
  9. Maggieann

    Maggieann New Member

    thanks for the info on neurotin, i might ask my rheumy if i can try it, i was on celebrex but they inflamed my stomach so had to stop them.Does anyone suffer with head pain? I am so fed up with it, sometimes it is only background ache at other times it is bad pain, my eyesight seems to vary day by day as well !!!!
    its a crazy thing. I think that America is more up on conditions such as fibromyalgia than the U.K, i am right saying this ? in England, where i live the hospitals & specialists do not seem to know a lot about it, sometimes i feel as if i am going round in circles.
    Wishing you all more painfree days.
    love Maggieann
  10. Tattoopixie

    Tattoopixie New Member

    I am not really familiar w/health care in the UK so I can't say for sure, but my guess would be that the American Drs know the same amount as the UK Drs (or should that be don't know?!). If you read the posts here, you will see that many of us have gone through several Drs in the USA to get one that not only believes in our illnesses, but is willing to treat it w/the required meds. I, myself, had to leave a Dr that I had gone to for 8yrs, that I was very happy with until, I brought up FMS & she made a comment, to the effect, that she would not give me pain medication for my FM. I then started seeing a Nurse Practicioner, who worked in an office that claimed to treat FM specifically, but upon reviewing my file for SSDI, I saw that even she was looking for other reasons for my pain, even though I got progressively, visibly worse, as I was treated there. I saw her weekly for about 8 wks before she finally conceded that I did have FM. I now have a WONDERFUL, CARING Dr that is just an angel! He was more than willing to keep trying med after med til we get a good combo going. He also is very comforting in regards to, this illness is not my fault & it does exist & he does believe in my pain. I hope you find a Dr that works for you. Do they have any FMS or CFS support groups or associations there that could tell you which Drs treat your illness? Oddly enough, the big source for good FMS/CFS Drs may be the Attorneys who do the SSDI (disablity) cases. I spoke w/a paralegal this week who said, "Who do you see? I hear Dr X, Dr Y, & Dr Z are really good Drs for that illness?" I think we've overlooked a good source of info on Drs here! Hoping you find a caring Dr soon!