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How do I get a doctor...Any listen???
10 Replies
frogzinn3598 - February 9

I am new to the forum, although not new to FM, my mother has suffered with this for I am beginning to show same symptoms...

I can't get any doctors to listen to me...and when I actually sat down and thought about it, my symptoms began 15 years ago...but doctors refuse to listen to me...I have gone to 3 in the last year...trying to find help/relief/ something...

They all look at I just want "drugs"...NO..I want help...I am not crazy..I am fairly intelligent...and I just wanna be able to get up...enjoy a day without pain...or a half a bottle of Advil, and just hold and enjoy my new/first..Grandson..

Any advice would be appreciated..

Thanks so much


Cher0208 - February 9


I too am new to the forum. There are so many great people here with a wealth of information. It has been very hard for me to find a doctor to listen to me and take this seriously. Every time I think I am going to tell my doctor how I feel about their lack of knowledge on this subject and their lack of an ability to help me I just wuss out and go to someone else who inevitably does the same thing. I have found a doctor in New York who has a lot of experience with fibro. Let me know if you are in the area. She is an anesthesiologist who specializes in pain management and treats holistically when she can. She has a nutritionist in her office that I go to as well and together they are helping me a great deal. I've had this almost a year now and am still learning. I will tell you one thing though, I learned more on this forum than from any doctor or website. I had so many symptoms that I thought were other issues entirely and I saw on this forum that every single one of my many symptoms are being experienced by someone on here. But anyway, find a doctor that has treated patients with fibro if you can. If a doctor doesn't listen then drop them. In the book The Pain Chronicles the author talks about how difficult it can be to communicate to your doctor because they are biased and we are intimidated. They are often trying to figure out if we are addicts who are trying to get a prescription or just depressed women. In the end we have to be strong and communicate effectively and if the doctor blows you off, rushes you out of the office or doesn't take your concerns seriously than it's on to the next one. We pay too much money for insurance and co-pays for them not to do their jobs!
Best wishes to you!


cjm - February 10

How to say this without feeling like an idiot. I have not been told I have fibromyalgia but I think I need to talk to my Pain Management Dr. at todays appointment.
I have been seeing the pain dr. for about 6 months for a shoulder problem, so I've only talked to him about my shoulder. Last visit I was given an rx for Lyrica. I didn't ask any questions about why. He also gave me a booklet put out by Lyrica, I looked through it and I know I don't have diabeties, I don't have seizures, it's been 20 years since I've had shingles.. then I saw fibromyalgia, and a few symptoms in the booklet, all I thought is "that is me". I then went to a website listed in the booklet that had more symptoms, and it was still me. I see all these things that I have been ignoring, or making excuses for like: getting older, not exercising, exercising too much, exercising wrong, headaches run in the family, we need to replace the mattress, we need to put a memory pad on the mattress, wondering can you get A.D.D. as an adult and so on. Now seeing all the symptoms in one place... I'm not trying to diagnose myself, and I'm sure the Dr. will not like me when I pull the print out of symptoms and the booklet he gave me.
If it turns out to be Fibromyalgia, I'll know I've been suffering in silence for years and didn't need to. I've gone to the dr. for headaches, blood sugar dropping for no reason, the shoulder pain and anxiety after my Mom died. Most of the visits with my family dr. I've brought up sleeping problems, but I've never talked about the all over pain, or getting shooting pains in an arm or leg, and I'm sure most people will understand or agree, when you go to the Dr. for one thing, its hard or you feel stupid bringing up all the other aches and pains that you think are just from getting older.
Sorry about the rambling, I think I'm trying to talk myself into believeing I'm doing the right thing talking to the dr. about this. I don't want it to come out like I know better then him, but I also tell myself (and my husband says) if I don't tell the dr. everyting he's only getting part of the information he may need.
Thanks for listening


January - February 10

cjm - you should be asking questions and working "with" your doctor. I don't know why you would get Lyrica for shoulder pain? (Unless he thought you had fibromyalgia? Maybe that was why he gave you the booklet?)

It's best to have better dialogue with your doctor. They don't know if you don't tell them! (And I, like you, don't like to "complain" but I should do it more often!) Also, you should always know what drug you are taking and WHY. Mistakes get made as it is, and there's a higher risk of mistakes if you aren't communicating well.

Doctors are busy and don't always have time to learn much about all the new drugs they prescribe. Many just follow the drug reps' recommendations. That is why I have a good relationship with my pharmacist, and I always do my own research on the drugs I am taking.

If you have fibro, welcome to the Club! :)


toots2889 - February 10

frogzinn,cher,and cjm,-Since you guys are all fairly new to this, I will do my best to give you some advise. One of the things thats important to do if you think you have it, or recently diagnosed is to go thru all the information on the left side of this board. Read and learn as much info on fibro that you can. Then while your going thru it-create a log of all your symptoms that youve experienced already.Each one of us is different, and so what one of us has, doesnt mean the next one will. He wont know what your going through without that. Then, its very helpful to keep a daily journal of what you did through out the day, and how your pain level was. The more information you provide, the more willing they are to help, especially when it comes to pain meds. You need a rhuemy, pain clinic, or a dr. who actually knows and understands fibro. to treat you. Dont waste your time on a dr. that doesnt seem to be very helpful. That just delays time, that could be spent on treating you.Froggzinn, if i were you, id go to a rhuemy, if you havent already, as there the ones who normally diagnose fibro. I hope i was of some help to you guys! If you have questions, dont hesitate to ask. Take care and good luck!


cjm - February 11

Well it's official, I have Fibromyalgia. Now what?
I was able to make myself talk to the P.A. at my pain management dr. yesterday. I wasn't easy but I did it. I ended up there for 40 minutes, I'm sure that put him behind schedule, but he didn't make me feel rushed and kept asking if I had any other questions. I go back in 3 weeks and see the dr.
Maybe they were leaning towards Fibromyalgia, when I was given the rx for Lyrica last time I was there, and yes I know I'm stupid for not asking questions. The funny thing is I'm only like that at Dr. offices. I'm very uncomfortable in any setting I'm expected to talk about myself.
With my family dr., I've been to him for headaches, migraines and tension headaches, for my shoulder, and a few others things. Everytime I would usually always mention sleeping problems, but never talked about the constint pain because to me it was just because of getting older or out oof shape. But it really did suck being in my 40's (now 49) and feeling so much older, and not being able to explaing it. I know if someone doesn't have the whole picture....
I have leaned now, that I do need to be more up front and need to understand that I'm just complaining or being whimppy.
As far as medications, I'm taking tramadol for pain and have been for 8 or 9 months because of the shoulder injury, Lyrica, which he is adjusting to a manageable level. I couldn't take it 3 times a day because the pill in the middle of the day made me really dizzy and I wasn't comfortable driving. Now he is adding Savella. He explained what it was for and that I won't see any results usually for a month. I will go over all the medications at the drug store just be be on the safe side.
I know I will have lots of questions but don't want to write too much here. Hate ramble on and on.
I want to thank everyone that responed, and being new to this its great to know your not alone.
After some of the stuff I've read here I do have to say I am on the lucky side of things. 1st the Dr. I ended up with because no one else knew what to do about my shoulder specializes in Fribromyalgia. 2nd I have a great employeer, it's a small company, the office is just me and the owners. They were very supportive when my mom was sick and died and understand what I'm going through now.
Thanks again


January - February 11

Hi cjm - Toots made an EXCELLENT point. Especially since you don't like to "complain." Keeping a journal will help you see your patterns, and going to the dr. with a summary and list of symptoms and questions will focus you. It's time-consuming :( but I always do better when I'm "prepared" at the dr. with my list.

So glad for you that you found a fibro doc, and that your employer is understanding! Lucky you!

And a PS to Toots - you are SO right about not wasting time on doctors who don't "get it." I am to the point of just (nicely) getting up and leaving. Why bother? After all, WE are paying THEM for a service.


Fantod - February 12

frogzinn3598 - Call your local hospital and ask for the physician referral service. Or you can probably go online to the hospital website. See if you can be matched with a rheumotologist and/or a pain specialist (I have both) with an interest in Fibromyalgia (FMS).

Or, go online to the National Fibromyalgia Association website and see a list of fibro-friendly doctors in your area. Be sure to mention that your mother has FMS when you see the doctor.

OTC medication like Alleve or Tylenol does not address the type of pain caused by FMS. Only certain classes of prescribed medications work for the type of pain associated with FMS. You are only creating problems for your stomach and liver.

Your experience with doctors is not uncommon. And, once you do get a diagnosis, I'd like to suggest that you report all three of them in writing to your health insurance carrier. Save someone else who may have FMS the same frustration that you have experienced. I hope that you are able to get some qualified help soon. Take care.


alivenotliving - February 15

Hi frogzinn3598: So sorry to hear about your frustrating problem with the docs. I loved my doctor so much -he was so wonderful...and then he took a job far away and I had to change docs. I went through the same issues...and also docs that just wanted to shove a new drug in me to "see how that works for you". I had to get angry! I called a physicians referral for help. I told them I would love to keep my liver and such, so if they could find me a doctor who cared and didn't think some new drug was going to magically make me feel wonderful, I needed that person...someone who was versed in Fibro and had more than 2 mg of compassion in them, before I lost my mind! I got a new doc that is awesome! I told her that I am so sick of trying things that don't make it stop...and liver damage or risk of becoming dependant on pain killers scared me. I asked her if she would please write me a script for water therapy and she was glad to do so. A few of the hotels in the area allow people with a script for water therapy to come in and enjoy their pool and hot tub from 7am-11pm Mon-Fri, so my girlfriend (who is handicapped) and I started going a couple times a week. I don't know if there may be something like that in your area...but it is an amazing treatment. You can get a little excercise that doesn't hurt to do :) Meet the beautiful elderly ladies who come in for their swims, and relax the pain and tensions down in the hot tub after. It makes more of a difference than pretty much any drug they have had me on and it's amazing for wake up in the am...and helping to relax you before sleeping at night. Sorry to be long winded...but I think one thing that should be prescribed for all fibro patients is Water Therapy! And don't be afraid to get angry and say HELP ME NOW or I will find someone that will!


aide - February 16

I have worked part-time for a family physician for 20 years. I have asked him many times what on earth is causing all this pain! He always tells me it is all in my mind. I wish my body would believe that!

I did not know I had FM. I did not know what this awful muscle pain was! I have acute IBS other severe gastro problems. I have basically diagnosed myself. The pain is pretty acute some days and it makes it impossible to function.

I also can't get a doctor to listen to me either. I once told my employer and doctor (also my friend) that I hurt so much I sometimes just wanted to die. He was a little shocked to hear me say that since he's known me for over 30 years. Believe me! I have a lot to live for but the pain has been so bad that I basically have wanted to die to stop it.

The doctor prescribed Neurontin 300 mg. It helps a little. I also take a bunch of anti-inflammatory meds which are really bad for the body - but is either that or scream.

I also would love to know how to find a doctor that believes me. I think the medical educators need to teach this. It has to start in med school. They just teach that it is all in the mind and to acknowledge the symptoms is to reinforce it to the mind and make it worse. He has told me this about other patients who also complain of fibromyalgia. It will be a cold day in heck before he acknowledges any such thing is true.


mdak - February 16

Aide- I reading what you had to say and I think most of us with FM can relate to you. I would start with finding a dr. that specializes in FM. If you find a dr that does work with fm patients, they do understand. The only problem I had is that my pain was out of control. They tried many things. I ended up at a pain clinic that also sees FM patients. It took tries of different meds for me there also. I now have that uncontrol. I have found out for the fatigue is that rest is so important. Even today, if I do something that I have to use a lot of energy, I will pay for it the next day. Take naps or rest when your body tells you, it helps keep your pain down. I also have been there with depression, not wanting to live because of the pain. My doctors now knows what triggers my depresssion. They are on top of keeping my pain undercontol. This took many many years to get to this point with my dr's. I hate to hear that you are going through what I did. It should't happen these days, I wish dr's would have extra studies on FM. Just dont give up, my faith has brought me through many valleys with this disease.



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