How do you sort out all the information?

Discussion in 'Fibromyalgia Main Forum' started by HeavenlyRN, May 10, 2010.

  1. HeavenlyRN

    HeavenlyRN New Member

    I have an appointment with the NP at my rheumy's office tomorrow. I have FM. In preparing for my appointment, I have been "taking notes" when reading some posts and I have even gone through some old posts to see what people have said works or doesn't work for them. I then "googled" a lot of the things I had read about.

    My mind is spinning!!

    Here are my questions:
    1. how did you decide what OTC meds or supplements to try?
    2. did you have bloodwork or other tests done before trying OTC meds or supplements?
    3. how do you figure out which doctors to trust? (for instance, I've read good things about Dr. Teitelbaum, who I think is involved with the Fibro & Fatigue Centers - but then I've read some not-so-nice things about the FFC)

    There's just so much information - both here and "on the web." I just can't figure out how to sort it all out.

    Any advice I can get would be appreciated (and it doesn't have to be before my appointment tomorrow!!) :)

    Thanks in advance.

  2. HeavenlyRN

    HeavenlyRN New Member

    How have you figured out the amount of a particular supplement to take? How do you know that you're not taking too much? I guess what I'm trying to say is I would be afraid of "overdosing" on something.

    No, I don'r have RA, "just" OA. But that's enough! I have degenerative arthritis in my spine, hands, feet and neck.

    I saw a naturopath earlier this year and started on a number of different things. But, I just found it difficult to take all of the things she had prescribed, as well as the other stuff I was already taking.

    I do plan to see her again in the next couple of weeks and hope that I'll be able to handle everything she suggests. Plus, anything my NP suggests.

    Thanks again for your information.

  3. JLH

    JLH New Member

    I really don't have "answers" for your questions, but here are my comments:

    1. I have tons of medical problems, so I don't take many supplements because I don't trust them since they aren't regulated by the FDA ... I am afraid they may not work well with all the prescription meds that I have to take for my heart, diabetes, systemic lupus, arthritis, gout, blood pressure, etc. (I have a list of all my medical problems in my bio.) I had a mini-stroke last year and I am on a high dose of Coumadin/Warfarin, so I don't want to mix too much this it either.

    In fact, the only supplement that I do take are Gelatin for my nails and Calcium +D.

    2. I have had systemic lupus and fibro since I was in grade school and I am now 59. Only, back then they didn't have the same names for lupus and fibro. I had a pretty rough time for years then and my parents took me to dozens of doctors to find out what was wrong with me. When I got to my 20s, the severe migraines were thrown into the mix. I battled them until I retired for work ... I had a highly stressful job for 30 years.

    It wasn't until I started having heart problems in 1990 and was hospitalized for them that I found a name for what I had. My cardiologist had called in a Rheumy because I had so much arthritis all over my body. I had complained to him about so much pain being in that hospital bed for so long and not being able to move around--that's when he called in the Rheumy.

    The Rheumy asked me tons of questions. He told me he thought I had some other stuff going on besides just the osteoarthritis. He took lots of blood work and did some other tests--but I can't remember what they were now. He came back with the diagnosis of systemic lupus. It was a year later that he told me I also had Fibro.

    I went the next few years trying out different meds to see with one would help me the best. They all were mainly antidepressants because he said the main thing was to get me to sleeping better.

    I doctored with him for years until I felt like he wasn't doing any more for me. Then a new doctor joined the practice of the Internal Medicine practice that I went to. I had to see him one day that my own doc was all booked up. I liked this guy and he took an interest in all of my problems! Waa Laa, I found my doctor!!

    3. That's how I found what doctor to trust! He took an interest in me and was concerned about my overall health and wanted to help me. He has sent me to all these "specialists in Fibro", at my request, and I found out that he knew as much as they did. I don't bother with these doctors like Dr. Teitelbaum, and others that I have read about here. To me, they are all about the publicity like Dr. Phil.

    Over the years, I have asked him to try different meds, etc. He pretty much goes along with me. For example, I had been taking Prozac, then I kept reading about Cymbalta on this site when it first came out. So I asked him about trying it. So I went off Prozac and have been taking Cymbalta ever since. Same thing about Neurontin when I started having more nerve pain in my back. He wanted me to switch to Lyrica and give it a try ... I did but it didn't work as well for me as the Neurontin did, so I stuck with the Neurontin.

    I also won't see any NP's. My daughter is a physician and I go by her opinion ... that they are good enough to see for colds, allergies, etc., but not to diagnosis and treat somebody with as many problems as I have. So, I only make appts. with the doctors themselves.

    I agree with you ...there is so much information, both here and "on the web." I have read it all. I have read every site on this web, I think, about my problems. I just take what I believe sounds like what I have and what makes sense to me, and just fluff off the rest. What I believe may be totally different than what you believe, or what others believe, but I don't care. I discuss everything "new" that I come across that I am interested in with my doctor. I try new stuff, etc., and settle on what I want to do.

    This is basically what I do for the fibro now: I take Cymbalta, Neurontin, and Zanaflex (a muscle relaxer) for sleep. I have had a sleep study and now sleep with a CPAP machine with oxygen flowing into it. According to how badly I hurt, I will use ice packs or a heating pad. I am in a wheelchair due to my severe back problems and severe arthritis. I do exercises from it--leg lifts, use 2 lb. weights with my arms, etc. I can walk a few steps, but not many before I would collapse from the pain. Every year, I normally take my insurance allotment worth of physical therapy in aqua (water) format. I love doing the water therapy--so relaxing and it helps so much.

    That's about all I do for the fibro. Everything else that I do relates to one of my other problems.

    I have Lortab to take for my back pain. When I do take it, it doesn't do a thing for the fibro pain. My Rheumy always tells me that narcotics do not phase fibro pain.... and he is correct for my case.

    Well, I talked on and on about nothing, but maybe some of this might help you!!

    Good luck and I hope you stumble across a routine that will help you.


  4. paulac7

    paulac7 Member

    I, too have numerous medical issues (see bio LOL), and take many different meds, also--I do take some supps, but nothing too strenuous, so as not to interact with my meds. And I am allergic to MANY things, also (food-wise).

    I also have a wonderful Rheumy who has helped me SO much over the past several years, and like your dr, JLH, she actually *listens* to me and my input, and we will discuss different treatment options. For example, when Lyrica came out, she asked me if I would like to try it, and I told her that I would get back to her on it. Came home, did my own research on it, and at next appt, decided to give it a shot. Didn't do too much for me, but that's another story for another time.

    I've also mentioned other Rx drugs to her, that I had researched, and as she is pretty open-minded, she said 'why not', and we gave them a try..........Some of these have worked, others not, but my point is that she is willing to listen to me, and she tends to think 'out of the box' on a lot of my treatment options.

    I read a LOT (anything and everything), and basically with what I have read, I take what I need, and leave the rest....

    **What I believe may be totally different than what you believe, or what others believe, but I don't care. I discuss everything "new" that I come across that I am interested in with my doctor. I try new stuff, etc., and settle on what I want to do.**

    That kind of sums it up for me, also. I also believe that there is no 'one size fits all' treatment program for us, either--what might be someone's miracle drug, might send me into anaphalaytic shock--kind of have a 'trial and error' thing going, and hopefully, eventually, you can hit on the right combo that best works for you.

    Good luck to you, and good topic, also--be interesting to see what other feedback you get.

  5. HeavenlyRN

    HeavenlyRN New Member

    ......for your replies. I have a lot of searching to do!!
  6. Misfit101

    Misfit101 New Member

    Did things go well at the doc? Im hoping you found some solutions. I found this post too late but it wouldnt have mattered. Im getting treatment (rx meds) for my back problems and Im on my own as far as the rest goes. I very recently started adding supplements so its too soon to tell. I hope things went well for you.
  7. HeavenlyRN

    HeavenlyRN New Member

    I saw the NP on Tuesday. I just love her. We all thought I would feel better after my kidney surgery - but I guess that just wasn't to be.

    Anyway, she ordered a ton of blood work, as well as a urine test. Along with the usual CBC, etc., she ordered another ANA and she's also checking for Epstein-Barr. She increased my Lyrica from QD to twice a day and she said I could increase my evening dose to 2 if I need to. She also said we could try Minocycline. I started another thread about that.

    I have an appointment with my PCP on Monday and we will be discussing whether or not I am ready to go back to work. My NP doesn't think so. Yesterday I would have agreed with her. Today I feel pretty good. However, yesterday I didn't take any pain meds in order to see what it would be like if/when I go back to work (I can't take narcotics if I'm working). This morning I took my pain meds when I woke up and I still feel pretty good.

    So.....what's a gal to do?!! :)

    Oh well, I guess I just have to keep experimenting. The thought of never going back to work is really scary. Of course, the thought of goping back to work in bad pain is scary too!

    Thanks everyone for your replies.