Oh Im glad I found this board.... lots of questions!!

Discussion in 'Fibromyalgia Main Forum' started by Lachesis, Mar 26, 2003.

  1. Lachesis

    Lachesis New Member

    My sister (who is 26) has been officially diagnoised w/fibromyalgia. I've never been *so* happy!! Seriously she thought she was going nuts, we didn't know what to think...

    I was surfing the net for something else medically related to her and came across some Lady's story. After reading down I noticed she had Fibro and a lot of the symptoms my sister has.
    So I went on a search.... this was about a month ago. My sister just looked at the paperwork I found a little over a week ago.
    My mom got appts set up and my sister left the same day. Friday she got officially diagnoised....

    Does it ever get better? Do you notice it in stages (like my sister is really tired the week before and the week of her monthly, like drugged out tired. Other days, she can at least get out of bed, but she can not fuction).
    Do you take any kind of medication??? She takes Adderall and it really REALLY helps, but it was prescribed to counter her depression medication, which she's been off for almost 2 months and of course she is still tired, it's gotten no better. Found it's related to the Fibro
    Her doctor said she is not going into full REM. Out of 4 stages she only hits stage 2. Therefor making the tiredness/depression worse. However he didn't give her anything to sleep...

    Soooo here are my questions....

    Does it ever go away? Get better? How do you manage it??? She's been on Oxycodone for about 7 years.... the dosage she takes is amazing... no amazing doesn't even come close.
    She has hand problems that are unrelated to the fibro. I know her doctor said people w/fibro have swelling/joint pain ect... but this is different.. her hand swells up 20x it's normal size and is discolored and molted looking.

    This was her first symptom... she has had it since she was 11 or 12. It's gotten worse in the last 2 years since baby #3. She just started a new medication (Lexipro) and Im hoping it will work.
    I talked to her today (she is in Seattle still being tested) and she did NOT sound good. Not sure if it is PMS or what. But she was weapy and said she was in pain. If she is out of her pain med I will be AMAZED. (she gets 120 Oxy a month, thats 6 a day. She already got refilled in Seattle, the month isn't over.).

    I look forward to hearing from people....
  2. AnnG

    AnnG New Member

    Its so nice to hear how you care about your sister! And, I'm glad you found this board. It really is phenominal. There are people here who rival Drs. on how much they know (sadly, I am not one of them!).

    I too, am "can't lift your arms" tired during hormone times. I was recently started on a low dose of birth control pills and that at least has helped me not be hormonal everyday!

    I avoid meds as much as possible but have started taking flexeril everynight at bedtime. My sleep was much as your sister's is. Being regular about taking it really seems to help.

    Depression is a horrible scary disease and I hope they find the right med for her. I have taken a low dose of Prozac for a decade now with no side effects. Everytime I think myself cured and try to go off of them, I end up being very sorry. I am finally admitting to myself that they are something I really need.

    I wonder if there is some kind of rebound effect happening with your sister and her pain meds? She may need to be completely weaned off for a period of time.

    She is lucky to have your support and I hope you get the answers you need.

  3. Shirl

    Shirl New Member

    Hi welcome to the board! It is wonderful you are so concerned for your sister. Nice to hear siblings still love one another these days.

    I have Fibro, but do not have joint swelling, that really sounds like arthritis not Fibro. Do read our articles on the 'Home' page and the "Library', they will give you the symptoms of Fibromyalgia.

    We have mostly muscle pain. Yes, we do get fatigue, but it does not last for long periods of time, at least mine does not. Mine will last about three days, and then its gone. But if you have Chronic Fatigue Syndrome the fatigue is horrible.

    My biggest problems would be pain, and sleeplessness, sinuses attacks, headaches, Fibro Fog, etc.

    I don't take prescription drugs except for a low dose of Xanax once a day for racing brain syndrome.

    I am allergic to most drugs, especially pain pills.

    I take supplements, herbs, vitamins, and old fashioned things.

    If she is in a lot of pain, you might want to get her a 'wireless mattress heating pad', they are sold at Penny's Sear's and Wal-Mart. It helps with morning stiffness, and pain at night.

    Has she been check for a deficiency in magnesium? most of us are deficient in this mineral.

    I take two differnt magnesiums, and they have helped to eliminate my pain at least 80% in the last year.

    If I can help anymore, please just ask. I am sorry you sister has this illness.

    I have had Fibro now for 20 years. As for as I know the best we can hope for right now is finding relief, there is no cure for this. I am sorry to have to tell you this!

    I do not have depression, and I do not have that swelling you mentioned. Could that be caused by some of her meds?

    You could call the pharmacist and ask them, they could tell you the side effects of the drugs she is prescribed. That sounds very serious to say the least.

    I sure hope you get some answers. That Oxycodon is not going to cure her, its only good to relieve the pain, but it will come back when the pills wear off.

    Good luck, and please let us know if we can help you, ask all the questions you have.

    Again, welcome to the board.

    Shalom, Shirl