see dr today any meds I should ask for

Discussion in 'Fibromyalgia Main Forum' started by chloeuk, Nov 7, 2006.

  1. chloeuk

    chloeuk New Member

    I am seeing the immunologist today and I know some have mentioned meds that have helped them but I cant remember...the thing I want to address is the pain..from muscles and joints.

    I have been thinking abouyt what I am going to ask him and I thought I would ask him if there are any clinical trials available...I know that these can sometimes be available as when I had severe psoriasis I was told if the treatment doesnt work then dont give up there are always clinical trials...also going to ask about seeing if there are any drs who specialise in it...although being in Australia is a disadvantage because there doesnt seem to be any drs who do.

    I am also going to ask him about research...and ask if he has found anything that works well for his other patients with cfs...also about the blood tests that arent common to do that can be an indictor of cfs.

    He was great last time and hoping he will be able to help me...any advice on questions or what I should be taking would really help..I am off to bed for a couple of hours as exdhausted but will check back before I leave for my appointment.

    Thanks in advance you guys are great.
    Chloe
  2. butterfly83

    butterfly83 New Member

    Well I need a little more info on you (like are you taking anything at all now? have you taken anything in the past for pain? do you have trouble sleeping at night because of the pain?), but in general, I'll just tell you some of the meds I'm working with right now to try to help me, and what i'm using them for..

    Ultracet - Which is one of the only non-narcotic pain relievers, and therefore a good starting point for patients graduating into prescription pain management, and doctors who are reluctant to prescribe pain meds to CFS or Fibro patients. It is a mix of Tramadol and Acetimenophen. There is also 'Ultram', which is just Tramadol. I started out on a low dose, and I've been on it for several years, so I've moved up to 2 tablets, 3x a day. I do feel a signifigant difference in my pain when I don't have it in my system. The way I try to describe it is that Ultracet helps with the underlying, dull aching pain, and the Hydrocodone (the 2nd pain med i take), helps with the surface throbbing type pain

    Hydrocodone - aka Vicoden. It is a narcotic, so if you haven't taken prescription pain meds before, you would want to ease into this slowly. In general, it is best to take as little pain medicine as possible to get by. That way you will not develop a high tolerance too quickly.

    At night I take:

    Ambien - 10 mg to help me fall asleep and stay asleep through the night

    Soma - A muscle relaxant, that helps mask my muscle pain long enough for me to fall asleep. It worked more strongly when I first started, so if you and your doctor do decide on this one, be sure to take it when you are IN bed. It can make you kind of loopy and sleepy at first, so its good to be safe incase.

    Klonopin - Studies have shown that this helps enhance stage 4 sleep.

    Xanax - Same as above.

    People have also been talking about 'Mirapex', a new med they are trying out on patients for increased energy and decreased pain. I'm planning on talking to my doctor about it at my next appointment.

    Good luck at your appointment! I hope it is beneficial.
  3. chloeuk

    chloeuk New Member

    I have been unwell since January this year. was given a possible dx of cfs in June. When my illness began I sufferedx with alot of neurological symptoms including weakness down one side, urinary retention,muscle and joint pain that wasnt helped by steroids or codeine based pain killers. I was on sleep meds for many years but stopped taking them 3 months ago as they werent working for me and I was having side effects...my sleep is better now. Medications I am on are amitriptiline 100mgs at night for depression but also pain and migraines, somac a stomache settler as I have chronic indigestion, voltaren for pain and just this week paracetamol with codeine. I dont feel any benefit from the pain meds, I was hoping the codeine would help but it hasnt.

    My pain at the moment as in today is bad, monday was very bad, aching all over, feeling of heaviness in my arms so that I couldnt lift them up, feeling of weakness in my legs which made it hard to stand, stiffness in joints esp my hands, burning pain in my musles...what is very strange is that on Tuesday I woke up at until the evening my pain was so low that I didnt have to take even the voltaren, it came back in the evening though and this morning I have woken up the same as Monday...which is good because I am seeing the dr today.

    I have just looked up mirapex and I will ask the dr about it.

    Chloe
  4. butterfly83

    butterfly83 New Member

    If you've only gotten a diagnosis of CFS, I would ask about Fibromyalgia, because your symptoms sound like they go right along with it. Has a doctor checked the typical fibromyalgia trigger points?

    Anti-inflamatory drugs haven't helped my pain much either. Tylenol with Codiene, some people it's helped, some it hasn't. But it sounds like your pain is not controlled, so I would really try to explain clearly to your doctor the type and severity of your pain, so he can see your need of getting some assistance. The thing with Fibro is that meds work so differently for different people. Something can work great for one person, and not work at all for another. So you really have to just go through the list of Fibro meds to find what works for you.

    But it's very important to get your sleep settled and try to sleep as best as you can, because that will effect your pain levels A LOT. So be sure to talk to your doctor about helping you get a deep sleep so that your body can work on healing itself.
  5. butterfly83

    butterfly83 New Member

    Chloe - How did your appointment go?