How long did it take to find a Dr.? What kind?

Discussion in 'Fibromyalgia Main Forum' started by IowaMorningGlory, Sep 19, 2006.

  1. IowaMorningGlory

    IowaMorningGlory New Member

    Hello to All,

    I have had symptoms since July of 2005, with secondary condition of gallbladder not working. Well after months of tests to get that figured out and removed, I am still dealing with the FM symptoms chronically. Have been to one Rhuematologist, on to my second. My family provider physician is understanding and off the record concurs that it is FM, but doesn't want to do anything until I see the new Rheumy. That will be Nov. 6th!!! I have 3 teenagers at home, a husband who is working way to hard and has had 2 back surgeries, and has chronic RLS. I am a healthcare professional and because of feeling like I had the flu 3 out of 5 days a week because of stress I had to resign from my job. I haven't slept in my bed for over 3 months now, I sleep on the couch because of the pain, now it is getting to where I can only sleep in the recliner. I am getting so depressed, or frustrated (at this point I am not sure which)
    In a nutshell reading these posts the last few days has helped me immensly, to read of others in the same place I am, and know I am not alone.
    My family tries to understand...yet I am still the main caregiver...and I am feeling like I am letting them down.

    My question after all this rambling: How long did it take most of you to find a doctor who could help you? And ultimately, what kind of doctor was family physician, Rhuematologist, Neurologist?

    Thank you one and all, and Blessed Be,
  2. suzetal

    suzetal New Member

    My GP recommended a decease specialist.He recommended and got me in the next day to see a rheumy.

    The rheumy was the one who diagnosed me with FM.Now my GP neurologist and shrink take care of me.They work as a team to try and control my pain.

    I was bed ridden for 2 years now I'm out of bed.Don't get me wrong I am not cured just in less pain than I was in those 2 first years.I also now have CFS and OA.

    Its real hard to cope with these DD.

    I pray you find someone soon

  3. mindbender

    mindbender New Member

    You poor girl. You are probably facing a future train wreck. I went to supposedly, one of the best neuroscientist's in the country. I was not impressed. We all can go on for ever. His diagnoses, "you must have some sort of fibromyalgia." on his way out the door. He gave me all the tests that I had already taken from people w/ a lot less school than him. I also could tell that he did not beleive me. You will more than likly get a lot of advice here, but I think Immune Support has a link about this all to commen problem. My advice: Go ahead and do all your home work here. So that you are able to do your Drs. job for him, and while your at it do your lawyers home work. Although I'm being facetious, I'm not.
  4. IowaMorningGlory

    IowaMorningGlory New Member

    My nearest specialist will be oh! approximately 90 some miles away? I am hoping for the best. I am so glad you have found someone(s) who at least gave you some relief.

    Curious, what exactly was the key, or what was the deciding factor when you saw the Rhuematologist that he said, "yes, this is FM".

    Blessed Be,
  5. IowaMorningGlory

    IowaMorningGlory New Member

    I think the most frustrating part is I am a Healthcare Professional, I know almost every doctor, specialist, surgeon, and nurse in the area. My frustration is they know when I come in I know what I am talking about, but I am currently on Title XIX insurance from the state. Because of this I am jumping through all their hoops, and I just want to go back to work!

    Thank you for listening,
    Blessed Be,
  6. Slayadragon

    Slayadragon New Member

    I really think that all CFS (including fibromyalgia) patients need to bite the bullet and see somebody that makes a specialty out of treating this DD, even if it means traveling to another city or paying a fair amount of money not covered by insurance. (Although the $3,000-$5,000 that Teitelbaum charges seems a lot......his book should be required reading.)

    Most doctors have only a passing knowledge with this stuff even if they "believe" in it, and so you can spend years with them getting nowhere. (Would you get a heart bypass from a doctor who had only done two in his life, if he didn't have anyone more knowledgeable backing him up? If not, why should this be any different?)

    I'm not saying you have to keep going to the CFS doctor on a regular basis after you've got a game plan in place, but it seems to me almost mandatory that you start with one if you really want to get significantly better ever.

    do people agree or disagree on this? Are there people who have seen only doctors who don't specialize in this stuff who have ever gotten substantially better (e.g. greater than 20-30% of functioning)?
  7. IowaMorningGlory

    IowaMorningGlory New Member

    Oh! I definitely agree the drive is not the problem. The problem I am having is: Is it a Rhuematologist I want to see since I have seen one already and I believe he passed me on because I am on state insurance? I work with doctors all the time and have a good idea what to ask them.

    All I know is I am tired of the pain. Tired of being tired. I need to keep busy, and can't. I take Flexeril 3-4 x's every day. Still does not relax my muscles. I am so tight I just would like to scream.

    In a nutshell...I am on great terms with my GP. Since seeing another specialist is almost 2 months away, would I be better off trying to educate my GP more? His nurse is wonderful, she is who I actually talk with the most. They definitely know my migraine history. (Demerol is only thing that works and they always get me in ASAP) I also worked closely with them when I was the Assisted Living Manager/Nurse.

    Thank you. I need others who can give me advice and I appreciate it so very, very much.

    Thank you, and Blessed Be,
  8. StephieBee

    StephieBee New Member

    I have been having symptoms of FM, CFS, RLS and MPS since I was 17.

    I was officially dx'd at 20 by a rheumy. He told me that my pain was too wide spread to help me.

    It has taken me 7 years to find a good doc. He is a Rheumy and he specializes in FM along with some other conditions. He is by far the best doctor I have ever had.

    I have only been seeing him for a few months now, but my pain has decreased significantly already.

  9. IowaMorningGlory

    IowaMorningGlory New Member

    Both messages were very reassuring. I know I am in this for the long haul. I am hoping beyond hoping that the Rhuemy I see in Nov. will be able to help. Oh! and yes I am on his cancellation list, so I am keeping my fingers crossed.

    I go to see my GP tomorrow, so I am hoping I may be able to talk him into something better than Flexeril for muscles. My back muscles are so tense last few days and I have been taking Naproxen and Flexeril without relief.

    I am glad I could help on the fever question. :)

    I am so very glad to meet everyone, and I am very glad I found this site. It has been a blessing to hear from others who have been where I am.

    Blessed Be,
  10. jenn5

    jenn5 New Member

    I found a good MD after a year and a half, I found a good chiropractor a few months after that, but I am still looking for a good all-around alternative type doctor who can help me with everything. That would be great.

  11. PVLady

    PVLady New Member

    I wish I could tell you exactly what would help or which doctor. The main thing with any doctor is they believe fibro exists and you have a good relationship with them.

    I recently started see Dr. Holtorf in Torrance,CA. He specializes in treating fibromyalgia,CFS and hormone imbalance.

    I started bio identical hormones and seem to feel better. You might check out his website and read what he says about treatment for fibro and chronic fatigue.

    Have you been tested for Epstein Barr Virus or any other viruses? I am positive for Epstein Barr as a "old infection". My family doctor referred me to a "infectious disease specialist" who ordered several other blood tests for other viruses.

    If you want to know the other blood tests I can let you know. At Dr. Holtorf's office they also gave me a supplement called Corvalen. It is the Ribose in Corvalen that is supposed to help with fibro.

    (You can also read about that on the web). My husband even started taking it and says it helped his muscle cramps. You drink Corvalen, it is a powder you mix with water. It tastes fine.

    It seems like everything is "trial and error".

    I am curious, I also have gallbladder problems (alot of small stones). How did you tolerate surgery? and did it help. I have chronic gastritis and am wondering if it is caused by the gallstones. I would appreciate your thoughts.

    [This Message was Edited on 09/20/2006]
  12. wld285

    wld285 New Member

    I have had this over 40 yrs. and been to every place you can think of. I am traveling over 3 hrs. each way and spending money I can't afford, but the FCC clinic has given me more hope than I have ever had.
  13. IowaMorningGlory

    IowaMorningGlory New Member

    Thanks for the info on Dr.Holtorf I am going to check his site.

    They actually did quite a few tests on my gallbladder because I didn't have stones and found out it was not functioning at all, or very little. They removed it laproscopic and I was home the same day. (Actually I went home the same day at my request, I could have stayed they knew I had three kids at home, but as a nurse I don't make a very good patient, but they all still love me) I healed really well and have only found that there a some foods I can't tolerate as well. My reflux seems to be worse than before, but that may be IBS with the FM, so not really sure.

    Thank you again and Blessed Be,
  14. Mini4Me

    Mini4Me New Member

    She specializes in rehabilitation. She can also diagnose fibro. She's currently giving me trigger point injections, long acting pain meds, and has me doing stretches and exercizes.

    Note I did not say psychiatrist, it's physiatrist. She's the best one I've come across in the 10 years since I started down this ugly path.
    Best of luck...

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