Best way to talk to a doctor?

Discussion in 'Fibromyalgia Main Forum' started by Notonline, Feb 16, 2003.

  1. Notonline

    Notonline New Member

    I’ve felt lousy for a long time, and been to many doctors over the years…I’ve been told I’m depressed, that I need to get more exercise, that it’s all “in my head”, and laughed at and given an Alzheimer’s test when I complained that I was having difficulty remembering things.

    I am beginning to believe it is not “in my head” after all, and that it may be FM. I ache it seems like everywhere, some days I feel like my skin is raw, and it seems like I’m always tired. It’s gotten worse since I had my son 4 years ago. I’ve always suffered from insomnia, I wake up at a literally a “pin drop”. Diagnosed with IBS when I was 13 (36 now). Since my son, I have problems remembering things, headaches, I’m always cold, & have other complaints that all seem to be listed with FM. I also have a problem with mild to moderate agoraphobia (but, not sure if this is related in any way).

    My son was delivered by C-section because of severe preeclampsia, a hypercoagulable profile was done as part of a study afterwards that I participated in, 6 levels where shown as high and I was told I had a “Prothrombin Gene Variant” at that time also. I’m seeing this might also be related? Correct me if I’m wrong. Haven’t seen a doctor in over a year, I’m thoroughly disgusted, and tired of feeling crappy. But I need to do something. Should I ask to be evaluated for FM? What is the best way to handle this…if I’m told it’s PMS or that I’m “just depressed” again, I swear I’m going to scream

    HURTSALOT2 New Member

    Just tell the doctor how you feel. If I were you, I would call to find out if the doctor you want to see believes in Fibromyalgia. I will do that now on due to past experience with a doctor who does not believe in it. If you ask to be evaluated for FM be prepared to go through many, many test.
    Take care, I wish you well.
  3. matildathehunney

    matildathehunney New Member

    It certainly could be FM or CFS. I've been sick for so long that I've basically given up on getting help from drs. for this, but don't give up. Keep looking until you find a dr. that listens to you and is willing to treat your symptoms. Some of them will say the most AMAZING unbelievable things to you, but doctors, like other people, can be real different from each other, so don't give up. I understand there ARE some sympathetic, helpful ones out there.
    If you find one, let me know :) :) :) :)

    Kidding aside, take care of yourself, rest often and long, no matter what, and Good Luck to you! Figure out a way to make your life "go slow", and it will be better for you. I almost don't want to type this next line, but I will anyway. Most times with this we have only ourselves with this DD and have little support from others. This seems to be a side-effect of the sickness! Remember when you are sickest, you will get a little better again in a while. This helps me if only I were able to remember it when I'm sick LOL
    I seem to be Ms. SmartyPants today, sorry, have had a bad day, please forgive.
    GOOD LUCK!!!
  4. Notonline

    Notonline New Member

    for the encouragement. I'm seeing it's very hard to find a doctor that actually wants to talk with you at all these days. They whoosh you in the office, and just want to whoosh you out with a pill bottle and be done with it. A real shame. Doesn't help I guess when you have crappy insurance coverage, like me.

    The good ones are out there I guess, I did find a great doctor about 5 years ago, one who I could talk to, and he actually seemed to care about his patients. Unfortunately, I was only able to see him twice before he was killed in a car accident going to work.

    Hubby and I divorced 2 years ago...mainly because of my health. I think he thought I was making everything up at the time. We've since gotten back together, he realizes I'm not faking this...I really feel lousy. But you're right, I think you basically deal with this alone. Afterall, who wants to be around someone that's tired & sick all the time? I'm definately no barrel of fun.
  5. layinglow

    layinglow New Member

    There are some very good Doctors specializing in Chronic Fatigue and Fibro. I would suggest going to them, even if it is quite a drive, and you have to save every penny to do so. I pay out of pocket and it's a day's travel to see one of these good Docs as I live in a very remote area, and have to travel to a large city. It makes all the difference in the world.

    I wasted way to much time, effort, sanity, and money dealing with the unbelieving doctors, it just adds to the stress which makes us more ill.

    My Cfs/Fm Specialists costs no more than any other Doctor, is caring, listens for as long as I need, is willing to treat with Rx's and alternative methods, and is my best advocate. After alot of wasted time, I am now receiving treatment----
    Best wishes, LL
  6. nancyneptune

    nancyneptune New Member

    to get diagnosed with FM is to go to a Rheumatologist. Then if you're really, really lucky the internists and gp's will believe you. But don't expect them to help you. They won't treat you for it. Neither will the rheumy. You will have to go to a pain specialist in the end. Don't waste your time with anti-inflammatories, most of the time we don't get any relief from them unless there are concomitant diseases like arthritis to go with the FM.
    The pain specialist that will give you good pain meds is also hard to find. Make sure that's what they do. Some doc's will say they are treaters of pain, then balk at giving you class x drugs for it. Hope this is of some help.
    It took me many years to realize that I wasn't going to get any help from general doctors. I'd like to cut your frustration level right at the beginning, it makes people bitter when they can't get the proper treatment.
  7. AnnetClo

    AnnetClo New Member

    I'm very sorry you're having such a tough time finding a doctor. Unfortunately, it seems that's pretty common with FM. I was very lucky to find a PCP who understands Fibro and the pain that goes along with it. Of course I had to see several other docs that didn't have a clue before I found him.

    The first thing is to get a diagnosis. I called the FM support group in the town where I live and they gave me the name of a rheumy who dealt with FM patients. I saw him first to get the diagnosis but then started looking for a GP to really treat the symptoms.

    I don't know if this will help and it's strictly my opinion, but I think that when you find a doctor who treats FM that you let him decide the treatment plan. When I first saw my doc he started me out with Darvocet and Bextra for pain and Elavil for sleep. At the same time he ordered a lot of labs to rule out other things. Even though the rheumy had ordered some of the same tests, he wanted current results. I was fairly certain that the Darvocet and Bextra wasn't going to work, but I did try it. After 4 days I called his office and told the nurse that I wasn't getting any relief so we made an appt and I went back in to see the doc. This time I took some notes that I had been keeping about the pain-where it was, how severe, other things that I was trying (like very warm baths, heating pads, etc). This time he prescribed Percocet, Skelaxin ( a muscle relaxant) and continued the Elavil for sleep. This combination works so much better. I know that you've dealt with this pain for a long time and you must be desperate for relief, but in my opinion (and it's just my opinion) if you go into a new doc's office and tell him what will work and not work before he even has the chance to make his diagnosis, he may be a little skeptical. I remember when I worked in the ER and we had patients who came in with pain (mostly headaches) and told the doc up front what helped with the pain, 9 times out of 10, the doc wouldn't order it. They seemed to think that this was probably a seeker and the med they asked for was their drug of choice. Right or wrong, it just seemed to work that way.

    I sure hope you can find someone to help with your pain. Have you checked the "good doctor" list on this site? Maybe you can find one in your area. Or if you go to the FM support group in your area, maybe someone there can give you the name of a doc in your area who treats FM successfully. Good luck to you.


  8. starstella

    starstella New Member

    consider a physiatrist (physical medicine) doctor. From what I have read on this board, rheumatologists are not always sympathetic. I guess it's a hit or miss situation.

    I sometimes wonder if my FM started with subtle symptoms after the birth of my third child fifteen years ago, although I did not have a complicated pregnacy/delivery (but massive stress due to family problems). After that time, I did have a lot of times of generalized pain, fatigue, insomnia, and headaches. The PMS excuse was handy to explain all of those symptoms.

    I have been made to feel like the chronic complainer in my many trips to docs regarding my symptoms. For me, I finally got help when the physiatrist who I was referred to a physiatrist for accupuncture (for my varied pain complaints) and the physiatrist insisted on determining what was causing my symptoms.

    Do you have any of the traditional tender points (you can find them easily on an internet search). Unfortunately, its a long road to FM diagnosis, since it is a diagnosis of exclusion. If you do have the tender points, it would give your doc a point of reference for determining the possible cause of your symptoms.

    If your symptoms are being blamed on PMS, maybe a visit to a gynecologist would either validate or discredit PMS. Personally, the gyn doctor scene was a hit or miss also experience also. If you have a good gyn doc, she/he may give you a thorough exam to determine if your symptoms are indeed PMS. The gyn may also be willing to address your insomnia/headache problems. That gives your primary doc an additional viewpoint.

    Whatever, start with your most pressing problem, probably the sleep issue. Trying to handle the responsibilities oa 4 year old when you have too little sleep has got to add to your physical problems. Besides, hitting a doc with too many symptoms on your first visit is just too overwhelming for them.

    Good luck, hang in there, if you can find something to hang some hope onto it will help.

    [This Message was Edited on 02/18/2003]
  9. Notonline

    Notonline New Member

    Thanks for all your help...and suggestions, I really appreciate it.

    Actually tried the test for the tender points before, seems I'm scoring about a 12, but not all of the same places hurt everyday. Can this be the case?

    Gyn has me on a low dosage hormone at the moment...irregular periods, it hasn't seemed to help any yet. She keeps testing my thyroid everytime I go in though, she thinks I look too "wiped out". I think I'm going to try talking to her first...and hopefully go from there, and do some research on doctors in the meantime.