Discussion in 'Fibromyalgia Main Forum' started by sunkitty, Mar 23, 2007.

  1. sunkitty

    sunkitty New Member

    Hey everyone,

    I'm new to the board and have been diagnosed with FM about a year ago. I went to a Rheumy and basically put me on some sleep medicine and arthritis meds which made me sick. My question to anyone that could answer is what do I do next? My body hurts everywhere and I have a primary doctor that wants me to go back to the original Rheumatologist that made me feel worse.

    Anyone from the state of KS or MO on this board that may have a good doctor that they can recommend for relief? Or just valuable information to help me. I'm depresed because I don't know what type of doctor to go to or what types of medicine work best?

    Thanks for reading.
  2. coolma

    coolma New Member

    get the book on FM/CFS by Dr. Devin Starlanyl and Mary Ellen Copeland - most libraries have it. It gives you a complete breakdown of the illnesses, treatments, even copies of letters for doctors, lawyers, etc. etc. etc. Fibro is lumped with arthritis because they don't know where else to put it and most doctor's aren't familiar with treatments. But you will find one. Your local Community Care Access Centre or Arthritis Society may have a support group in your area. For sure in a city that size there are some people with fibro. Network with them and search until you find one. The key is to find a doctor that will treat you. Pain killers, anti-spasm meds, anti-depressants are the usual. You can also get trigger point injections from a specialist to relieve some of the worst pain. There are also pain clinics that are very good. Your local hospitals can give you info on those. In time, if you rest your body, take proper meds and get some exercise and be good to your body, the body has an inherent ability to regenerate and heal. But it takes time. The more knowledge you can get the more answers you will find, and better treatments.
  3. obrnlc

    obrnlc New Member

    hi sunkitty, and welcome to the board, sorry you have to be here tho.

    The best way to find a doc is to talk to others in your situation, esp. on here, for a referal, because even when you call around, they will tell you that they have a great success rate w/fibro, etc. then when you get there, they give you motrin and anti inflammatory spinal injections!

    i hate neuro's, followed by rheum., but it really is just your own experience, as others on here have had great success with each.

    i have a pain management doc that i like, but others hate pain spec. so if you can find a specific doc. by word of mouth, and have a trusted physician that knows you make the referral, they won't think you are just looking for drugs, which often happens.

    the arthritis meds won't help a condition that is not inflammatory, alot of "fibro" pts have good luck with ultram or vicodin for starters.

    read up on the guaifen. protocol on here, if you haven't had it long, you shouldn't need a very long reversal, real good info. Stay on the board, everyone comes up with some great ideas, it is a sanity saver!

    welcome and good luck--L
  4. jole

    jole Member

    Hi! I'm from Kansas but not having very good luck with the doctors. I have also known of a few others with it, and most go to a Rheumy in Wichita. What part of KS are you from? I live fairly close to Hays, in NW Ks. Have seen a neuro, rheumy, PPC, and psych so far. It's not easy to find a good doc in my opinion, but some areas are better than others.

    I hope you have good luck in your search. Looked at your bio and it is empty. Would help us all if you would fill out a few details for us :) (To fill in your profile look at the top right hand of this page whre it says your name/veiw my profile/editprofile. Click there and it will bring you to a page to write about yourself, as much or as little as you care to. Mostly symptoms, etc. Thanks!
  5. pam_d

    pam_d New Member

    Hi, and welcome! I'm from Overland Park...where are you? I can recommend one someone if you're not too far away...

    Let us's hard to travel too far when you're hurting...

  6. sunkitty

    sunkitty New Member


    I'm in Olathe KS, not too far from you. Everyone, thanks for all the responses, I already feel better. Pam, any chance we can figure out how to speak off line? Any assistance is greatly appreciated from all of you.

  7. sunkitty

    sunkitty New Member


    Yes, I went ahead and have already read through the documentation earlier today. Anyone having pain from rainy weather?
  8. pam_d

    pam_d New Member

    Hi again, neighbor! I'm close enough to the Olathe border to be almost in it, logged a lot of time last year in Olathe Medical Center, I still think of it as my second home, but that's another story for another time...

    I was going to recommend Dr. Steve Simon (also on the co-cure "good doctor list" on this site). I have never seen him myself, but I have periodically seen another doctor there; but Dr. Simon is the FM specialist there, I know that he gets very good reviews! He is an MD with Pain Mgt. Institute of Mid-America Physiatrists, they are at 4601 W. 109th St., Suite #302, Overland Park, and the phone # is 913-559-2440.

    I have never used the chat room here (where I believe e-mails can be exchanged) but I'd be willing to figure it out if you are. Let me know...

    Go, Jayhawks!!!

  9. sunkitty

    sunkitty New Member

    Hi, Pam

    Yes, I've spent numerous times myself at Olathe Medical Center, recently. I had kidney stones (had to be admitted) and then fluid around my lungs and other organs due to the fluid that was pumped in me from the kidney stone. I have actually seen Dr. Simon a long time ago for another condition (which led to a hysterectomy) he was ok, but kind of strange. I didn't realize that he was a specialist in the field, though. It was at least five years ago that I saw him.

    Did you like the person you saw in that clinic? Maybe we could figure out something with that chat room, then we could exchange email addresses or something.

    Also, so you know my nickname is sunkitty- friends of mine named me sunshine a long time ago and I have two cats. That's where the nickname comes from. My name is Karen.

    Thanks for your response.


  10. cats3

    cats3 New Member

    Welcome to the board sunkitty.

    I see Jeremy E Baptist,M.D.,Ph.D for FMS,CFS,IBS,allergies and the list goes on. Been going to him for 4 years now.

    Dr Baptist is an immunologists and allergist who specializes in FMS, allergies, Chronic Fatigue, IBS, etc.

    His office is in Overland Park, Kansas around 83rd and Metcalf.

    He does not give pain meds but will treat the cause, not just the symptom.

    Dr Baptist has helped me more than any other doctor I have.
  11. sunkitty

    sunkitty New Member

    Thank you. I'll give him a call and see if he takes my insurance. It's definitely worth a try.
  12. pam_d

    pam_d New Member

    I have 2 cats, too!

    Boy, I've never seen Steve Simon myself, other than in passing in the hallway, so I don't know about his manner. I just know he's the one in the office who's known as an FM specialist. I saw Dr. Nalamachu there several times, but not specifically for FM, more for nerve conduction studies (I have a lot of carpal tunnel, cubital tunnel stuff).

    Wow, kidney stones---a co-worker just had one, that's some incredible pain. Do you get them often? A teacher I work with gets them periodically.

    I saw on your profile that you mentioned you are a thyroid cancer survivor, yay!!---did you see Dr. Smalley at OMC (or someone in his office) for radiation, perhaps? Don't know him myself, my oncologist sends patients to him for radiation, though.

    I'll have to figure out the chat room, now I have a reason! It took me a while to find this board, not the highest-tech person on the planet. I've never done the chat room yet.

    Are you a KS native?

  13. sunkitty

    sunkitty New Member

    Unfortunately I've had kidney stones about five times. Yeah, it's pretty terrible. I don't have any children but I heard pain wise it's about the same as child birth. The funnier thing is that I can't tolerate the heavy narcotic stuff (morphine, codeine) so I had a heck of a time trying to "pass" kidney stones without meds. UGHHHH, but I did it. I'm actually a Missouri native and have lived in Kansas for approximately two years. I had my radiation at Research Medical Oncology. I'm not familiar with Dr. Smalley, but do know where his office is because my Urologist, OBGYN and Primary Dr. all work out of the building. Are your doctors at Olathe, too?

    We definitely need to figure out the chat room stuff, since we've been chatting back and forth. I'm ok with computer stuff but only found this site today and knew I needed to sign up.

    [This Message was Edited on 03/23/2007]
  14. mindbender

    mindbender New Member

    I put your garage doors in. Pam, I put yours in too.

    Remember me?

    Ok, just kidding, but it is very possible.

    I’m from KC, (Missouri) of course.

    If your doors still work, then I probably put them in,

    if they don’t then they were put in by my buddy.

  15. mindbender

    mindbender New Member

    I've been misplaced to NE Ohio,

    What ever the word is.
  16. pam_d

    pam_d New Member

    Are you saying that I'll have to go all the way to Ohio if my garage door starts giving me trouble???

  17. sunkitty

    sunkitty New Member

    Yeah, I remember you, the garage doors work great (ha, ha). What are you doing in Ohio?
  18. sunkitty

    sunkitty New Member

    It's amazing were just chatting away. People are going to think that we are crazy. Oh yeah, we have this weird ailment. We are nuts!
  19. pam_d

    pam_d New Member

    My only docs at Olathe Medical Center are David Lee & Larry Corum, I see them every few weeks. I don't really see anybody for FM specifically anymore, mine has been in reasonably good control for a while (knock on wood). I did want to mention I also used to see Jeremy Baptist, allergist---I didn't care as much for him as the other cats3 does, but he was good at diagnosing and running some valuable tests.

    My daughter just came home from that yearly ritual known as "spring break" so I'm going to sign off, but I'll check in tomorrow and maybe we can brave the chat room!

    Have a good evening!

  20. sunkitty

    sunkitty New Member


    I'm working until around 3 tomorrow and I'll check in after that. Have fun with your daughter! We'll chat later.

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