Going to a doctor for the first time in a very long time

Discussion in 'Fibromyalgia Main Forum' started by mystere2e, Jan 17, 2010.

  1. mystere2e

    mystere2e New Member

    I got diagnosed with FMS in early 2006. I saw a rheumatologist for a couple years, then saw an anesthesiologist and a physical therapist who both really destroyed my trust in medical professionals. It has been over six months since I have seen any medical professional for treatment of my severe fibro/ME.

    My pain has only gotten worse, so I am seeing a neurologist this coming week. I'm wondering if y'all could give me some suggestions for "starting over" with a new doctor and all of that. I am not taking any medication for pain or sleep; I am only taking birth control and a beta blocker for low blood pressure.

    I know I need to discuss the possibility of getting a prescription for Lunesta, and I want to try to get a referral for a massage therapist (it is covered by my insurance), but I'm not sure how to ask for some pain medication without sounding like a drug seeker.
  2. AuntTammie

    AuntTammie New Member

    A lot of people with fibro (and some with ME/CFS) are finding that low dose naltrexone works well for them.....it blocks the body's opioid receptors temporarily and in doing so increases the body's production of endorphins (which can help with pain, sleep, regulate the immune system, help with moods, etc)....some find that it increases insomnia, but usually that effect is very short lived and if it persists, taking the LDN in the morning can help with that; others find that it actually improves their sleep

    most also find that they need to start with an extremely low does (.5 mg) and gradually work up to 3 - 4.5 mg.....you cannot take opioid meds while you are on it, but since you are not on any rt now, it might be worth a shot before going to those

    anyway, it's just a suggestion.....I have been on it since Aug with mixed results - overall very good, but I did just have a week of increased pain (apparently has something to do with getting the rt amt in my body).....in general, I have had about a 30% decrease in pain, though, and I am currently only taking 1 mg (had gone up to 1.5 too quickly and actually feel better on lower amt rt now)....I think that as I eventually increase the amt my body can handle, the decrease in pain will be even more significant

    if you want more info the site; lowdosenaltrexone.org is good.....also I have yet to go there, but have heard great things about the LDN yahoo grp

    anyway, like I said, just a suggestion......if you feel that you really need drugs, then try to explain to your Dr how the pain is impacting your life.....some here have said that approach seems to work better than just asking for meds or saying that you are in a lot of pain

    good luck
  3. JLH

    JLH New Member

    I'm glad that you are going to a doctor again. Don't let a bad experience, or even two, stop you from getting proper medical care.

    If you don't get any help from this neurologist, then try a Rheumatologist. I go to both an Internal Medicine doc and a Rheumy.

    If you are not taking anything for sleep, then you definitely need to talk about that with your doc. Sleep disturbance is one of the main problems with fibro. You must get that restorative sleep in order to help your muscles. If the doc suggests that you get a sleep study done, most definitely do it -- if your insurance pays for one, because they are expensive. I had one and it turned out that I have obstructive sleep apnea. Now that I am being treated for that, I sleep much better.

    Regarding your pain .... when you discuss it with your doc, tell him that you have heard that some fibro patients do well with Ultram or Ultracet, both are non-narcotic pain meds that a lot of fibro patients do take. It's always better to start out at the "bottom of the totem pole" than to ask for strong narcotic pain pills when you first see a new doc--they will then think you are a drug seeker. But tell the doc that you do have to address the pain issue because you are in a lot of pain.

    You doc may not even want to do the Ultram or Ultracet, he may rather try you on a med like Neurontin or Lyrica which are both fibro meds. I take Neurontin because Lyrica made me too sleepy all day to take. The Neurontin helps.

    I also take Cymbalta. It's an anti-depressant which is recommended for fibro and approved for diabetics with diabetic neuropathy (nerve pain). I am also a diabetic, so I take this for both the fibro and neuropathy in my legs/feet.

    For sleep, some people take an anti-depressant like Elavil, which makes you sleepy so you can sleep, or even over-the-counter Benedryl. I take a muscle relaxer called Zanaflex and it helps me. Then, some do take the sleep aids like Lunesta or Ambien. It all depends on your system and what you can handle, and what works best for you.

    I know that when I started out with my doc, I must have gone through a half-dozen meds (anti-depressants) to see which one helped me sleep at night the best before I started on the muscle relaxer route. It's a matter of trial and error to find out what helps you. Everyone is different--what works for me might not work for you.

    Oh, how I wish my insurance would cover a massage therapist, then I would try that route. I have never been to one, but would love to try it!

    One thing that really does help me, and my insurance does pay for the "physical therapy" is water therapy, or water aerobics. Exercising in the water takes all the pressure off your muscles and doesn't hurt at all. My insurance requires that the doc write on the prescription for therapy specifically "aqua therapy" in order for them to pay, or otherwise, they will only pay for therapy "on land."

    Good luck on your trip to the doc and I certainly hope that he/she can help you!
  4. Janalynn

    Janalynn New Member

    I'd be very upfront with your Dr. going through all areas of concern. I'd go over what things in your life you're having problems with. I would have no problem saying "what can I do for...(my sleep, my pain etc.) See what he offers, if he doesn't offer something, then I would mention what I know about.

    Make sure you tell your Dr. how your pain and lack of sleep is affecting your life. I just watched a video from a Dr. saying that patients your minimize their pain or problems in their life do themselves injustice. Their Dr.'s don't know what to do for them. They won't offer them pain medication or other medication if they aren't sure what they need. You don't have to mention medication by name, but you can certainly mention that you need something and why.
    That's what they are they are. Remember you hire them to help you.

    Good luck!
  5. mystere2e

    mystere2e New Member

    My doctor's appointment is tomorrow. I do want to respond to all your thoughtful posts though.

    Going down the list.

    - I saw a rheumatologist for years and she never believed my pain was "that bad." She did sponsor one month of STD for me, but she rolled her eyes when she did it. That's partly why I'm trying a neurologist this time.
    - I did get a sleep study done in 2008 and my legs move 100x per hour. I have very severe restless legs syndrome, which is also something a neurologist will treat more appropriately than a rheumy (in my experience).
    - I did aquatic therapy for roughly six weeks and it was awesome. However, I don't know of any places around here with hours past 5 PM, and I cannot afford to take off from work three afternoons per week. Darn shame.

    - Naltrexone. I've never even heard of this one, so it may be something worth discussing.
    - Ultram/Ultracet. This was one of the first drugs my docs put me on, way back in the day. It did absolutely nothing for me.
    - Neurontin. I was on this for RLS and it made me very twitchy and just terrible to be around. Will never take this again!
    - Lyrica. Did absolutely nothing for me. I view Lyrica more as a marketing scheme.
    - Cymbalta. Helped my mood considerably, but had to stop taking it due to price. Thank you for reminding me about Cymbalta; I will have to ask the doc about this one tomorrow.
    - Elavil. I've taken it and yes, it knocked me out reaaaal good! However, there were many days when I would miss work ENTIRELY because it knocked me out for too long. And I was on the lowest dose possible.
    - Zanaflex. Never heard of this either. I will have to ask about this one.
    - Lunesta. I used to take 3mg every night and it was, hands down, the best sleep aid I was prescribed.
    - Ambien. Let's just say the hallucinations before lights-out were no fun at all! Borderline terrifying. This drug should not be legal.

    I will have to answer the rest later!
  6. AuntTammie

    AuntTammie New Member

    if you research this and/or ask your Dr about it, make sure that you say low dose naltrexone, bc there is a very big difference between the regular stuff and the low dose - regular naltrexone (50 mg or more) is used to treat opioid addiction and is used on a continuous basis (24/7) - so the body's production of endorphins is always blocked - low dose (.5 - 4.5 mg) only blocks opioid receptors briefly ( once a day) and in doing so, it actually stimulates the body to produce more endorphins (once the effect wears off and the receptors are not being blocked)

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