Leaving the Dr's office in tears.

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IronCladDaisy
Regular Member


Date Joined Jan 2008
Total Posts : 45
   Posted 5/12/2009 12:45 PM (GMT -7)   
I'm sure many of you can relate to this, but I really need to vent. I'm so incredibly tired of leaving the doctor's office in tears all the time. Every appointment I come with a list of things I want to discuss with my doctor, and every time he blows all of them off. As soon as I start to cite an article I've read about something that I feel might be worth trying, he cuts me off.
 
Last week I had a sleep study. Of course, the tech has to forward all the results to the doctors to give you the final results, but she saw no espisides of apnea, and only a few of hypopnea when they made me sleep on my back. Left to my own devices, I don't sleep on my back. I have the appointment with the sleep specialist guy next week or the week after.
 
So today when I'm in seing my PCP for a fibro recheck, he tells me that I have full blown sleep apnea with a drop in oxygem saturation, and he's sure the sleep doctor is going to put me on a cpap. So, according to him, that will solve all the problems I've been having with fatigue. Now I'll have to see what the sleep doctor says, but the tech seemed pretty experienced, and she said that they'd put me on the cpap during the study if I was having apnea (and I wasn't) and that my oxygen saturation remained high the whole time. I'm almost positive he said that to get out of trying to make any useful suggestions about my fatigue today mad
 
Then he's all set to get up and leave, when I tell him I've been having a lot of pain, and I want to talk about it. He asks where, and I tell him mostly in my lower back/hip and in my hands. My hands are the worst right now, I couldn't even tie my shoes this morning they hurt so bad. I had to put on a pair of slip-ons even though they really don't have enough support, which just makes the pain in my back and legs worse. Anyhow, he tells me that fibro doesn't make people's hands hurt, and that it doesn't make people's joints hurt, just their muscles, that's it must just be overuse. You all know that's bologna, and besides, I don't spend a lot of time making repetitive hand motions or anything. I only work part time in a vet clinic.
 
I tell him if it's not the fibro, it might be arthritis, since my mother, her mother, and her grandmother all got arthritis in their 20's or 30's. He gave me this really condescending look and said "you're only 29, people your age don't get osteoarthritis." Riiiiight. Except for all the other women in my family rolleyes
 
Additionally, I read a really good article on low dose naltrexone and fibro, and I wanted to give that I try. I figured he couldn't object too much since it's cheap, and at the low dosages they used in the study, there is a very small risk of side effects. Maybe it wouldn't work, but it's a pretty benign thing to try, as I understand it. He offered me cymbalta for the five millionth time, and I reminded him agin that I've tried it already TWICE and it gives me no relief whatsoever, and a few unpleasant side effects.
 
I also brought up another article about topirimate and nerve pain, which was another thing I was thinking I'd like to try. I'm already on topamax for migranes, and I tolerate it well, so I wanted to know if I could try taking a higher dose to see if it helped with my nerve pain. He threw a fit and said absolutely not, then he checked my dosage, saw it was on the low end of the dosage recommended for migranes, so he agreed I could take the higher migrane dose but no more <sigh>
 
So that's all I got outof my doctor today. A whole lot of eyerolling and "I don't think so", and a small dosage change for my migrane medicine.
 
It's sooo frustrating to do so much research, and go in feeling so hopeful about trying a new medication or therapy, only to be shot down over and over and over again. The rollercoaster of emotions is just killing me shakehead
 
Yes, I need to switch doctors, but I have no idea where to go. The three before him were just as bad. A Rheumy might be better, but first I need to get a referral from a PCP, and none of them seem to be willing to give me one. On the last insurance plan we had, I managed to go to one without a referral, but I can't do that now. Although the insurance doesn't specifically requite a referral, the only office that'd nearby requires on before they'll make an appointment. Gah, I hate this.
 
Really, I wish it was easier to find a decent PCP.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 5/12/2009 1:09 PM (GMT -7)   
Daisy, I'm so irrate after reading your post I'd like five minutes alone with this guy that calls himself a healer. I have both fibro and osteoarthritis in my hands and they too are my biggest problem most of the time. Maybe if you let us know what area your in we can help you track down a real doctor. There has to be someone in your area that didn't get their license through the mail. The thoughts I have about people like that aren't very Christian. devil
 
You know your fibro family is here to do what we can to help you.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
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Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 5/12/2009 1:43 PM (GMT -7)   
Holy Cannoli!  What a Neanderthal!  You know what, he doesn't know much about fibromyalgia.  Just his statements that the pain in your joints isn't fibro shows that.  Your bones move at the joints because of the movements of tendons, ligaments, and muscles...and that's where your fibro pain is.  So, fibro could be causing the pain. AND, yes, you could have arthritis.  Maybe your family had rheumatoid arthritis, but I have known people that came down with arthritis in their teens.
 
The problem with your doctor seems to be that he doesn't like to be told anything.  He thinks he's a god.  You do need to find another doctor, since this one is still in the Dark Ages.  See what doctors are on your insurance plan.  If you need a referral to see a rheumatologist, then you need to find a good doctor.  Instead of looking in the general practioner list, look on the Internist or Internal Medicine list.  My doctor is a board certified Internist and is very knowledgable about fibromyalgia.  He will work with me.  Internists are considered primary care physicians and they have more medical education then the general practioners.  
 
Once you see some doctors in your area on the list, start making calls and ask them if they treat patients with fibromyalgia...if the doctor deals with many fibromyalgia patients.  If you do find a good doctor, they could take care of you without having to see a rheumatologist.  Mine has.  But, a good doctor will send you to a rheumatologist if they know they can't handle your complaints effectively.
 
Choose your next doctor carefully.  I live close to a university that has a medical college and my doctor is affiliated with that.  If you have a college, university, or teaching hospital close by, they could probably give you a great referral for a doctor.
 
It is so important that you have a doctor that will listen to  you.  I've done some research and thought I wanted to try things and sometimes my doctor will explain why he doesn't think that will work.  That's fine with me.  I value his input.  But sometimes you have to do what you think is best.  You know your body better than anyone.  When I wanted to try malic acid/magnesium supplements, my doctor told me not to waste my money.  I asked him if they would hurt me or intefer with anything I was taking and he said no.  So, I tried them anyway and they have worked for me!  He knows it too and includes them in my list of medications.  Even though I have great respect for my doctor I will try things that will help keep me off narcotics...hopefully.
 
So, even though this was a very upsetting day for you, you have learned something very important.  This is not the doctor for you!  Do a little homework and find a good doctor.  That's half the battle with fibro.  Let us know how things go for you.
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 5/12/2009 2:47:06 PM (GMT-6)


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 5/12/2009 2:14 PM (GMT -7)   

Brother...that is abhorent.  The first doctor I went to told me I had myofascial pain syndrome and marked that as my dx on the paper work, even though I went there will all the info on Fibro and when she poked at all the trigger points, I about levitated off the table.  She said she didn't believe in Fibro...it was a 'Yuppie Disease and right up there with Gulf War Syndrome.'

Like Sherrine said, find a fibro literate doctor that will help you.  I think you can call the Arthritis Foundation and they will give you the names of some in your area.

Feel better and keep us posted!

Huggies

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 5/12/2009 3:12 PM (GMT -7)   
I agree do some ring up and change Doctors, I have to say I am so lucky my Doctor is wonderful she wants to know everything I have learnt about Fm but then I live in Australia where anyone who knows about FM is pretty thin on the ground. I am taking a drug now thjat is wonderful I have gone off all pain killers YES all of them IF YOU WNAT TO KNOW WHAT I am taking just write on the forum page and ia will tell you. I was in a bad way no sleep comnstant pain I could barely move now it is great when the pain gets bad I just take a couple of these tablets and about twenty minutes later the pain is gone. I tried valium but they did not work when I asked my Doctor about something else to try and the next time I went back she suggested this and I CALL IT VALIUM ON STERIODS because that is what it is like. It is a super relaxin I have several friens=ds in the States that take it now and they are happy with the results it takes seveal weeks to kick in. Tell your Doctor to do some rearch and find out more about FM.
Kathy

Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 5/12/2009 4:23 PM (GMT -7)   
Hi Daisy - that is absolutely awful!!! He is dead wrong! and insensitive and a complete and total idiot. Fire him asap. Do you have friends who can recommend a good doctor? Maybe someone knows someone in your insurance plan. If they recommend a good doctor, contact him or her and talk about fibro. Good luck. I hope you find someone soon. Fibro is hard enough without having to fight with a condescending eye rolling doctor.
Sue

doodie
Regular Member


Date Joined Apr 2009
Total Posts : 67
   Posted 5/12/2009 5:38 PM (GMT -7)   
Hi Dasey, I am so sorry to hear this. It really is disturbing that a caregiver can be so careless.

Have you looked to see if there is a FM support group in your area. I know I had never thought to look for one until I moved to a new area. If you find one they would be able to suggest a good FM literate dr.

I wish you the best for you and your search.

Doodie

IronCladDaisy
Regular Member


Date Joined Jan 2008
Total Posts : 45
   Posted 5/12/2009 6:07 PM (GMT -7)   
Thanks everyone for all the support and suggestions <gentle hugs> I really needed to let out some of my frustrations.
 
I'll type more when I'm feeling a little better. I'm calling it an early night tonight and heading to bed now!
 
-Daisy

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 5/12/2009 7:34 PM (GMT -7)   
Fibro doesn't make people's hands and joints hurt, eh?

Huh. Tell that to my hands. And my fingers. And my wrists. And my elbows. And my knees!

This stinks, Daisy. I'm so sorry your Dr. was so dismissive..he obviously isn't too up to date on Fibro. It's awful the things we have to put up with in our health care system!

I know it is so hard to find a new Dr., but I do hope one comes your way soon!

Hope you get to feeling better. {{{{gentle hugs}}}}
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/12/2009 8:28 PM (GMT -7)   

Daisy, here is a link from a fibro support community with a list of doctor's for each state, who are considered good choices for fibro.  If you're not in the states, perhaps you can find something similar through a different support group.  I can personally vouch for one of the docs on the list in Ohio.

http://fmscommunity.org/findingadoctor.htm

I hope you will actively seek a new doctor.  I stayed with an unfeeling moron doc for more years than I care to admit and I only hurt myself.  Waste no more time!
 
Moderators: hope I'm not stepping out of bounds posting the link - but it is information only.
 
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 5/12/2009 8:59 PM (GMT -7)   
lucysgd,
You're not selling anything, only sharing info so you're good.

Daisy,
I've said it before but I'll repeat it for you in case you haven't heard it...

Please remember that 50% of all doctors graduated in the bottom half of their class. Your's may be one of them.... AND someone had to graduate LAST in that class and maybe it was HIM!!!
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 5/12/2009 11:19 PM (GMT -7)   
The tech was wrong to tell you anything. In fact, that was illegal. Only the sleep doctor should analyze the study. Wait until then.

I will say that my cpap machine improved my life immensely. It did not solve all of my problems but I love the 8 hours or more of sleep I get.

Donnaeil

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 5/13/2009 12:32 AM (GMT -7)   
I agree with Doodie, check to see if there is a fibro support group in your area. If it is difficult for you to travel to a meeting, call or email for a list of fibro-friendly doctors. If you can't find a fibro group, look for a chronic fatigue group, or any other group where the members have chronic pain. Many people with Lupus, arthritis, or other illnesses also have been diagnosed with FM so the members may have some suggestions for you.

The Arthritis Foundation can also help.

Our local in person group keeps a list of fibro-friendly docs in all specialties, including dentists, so most people can find someone that accepts their insurance.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 5/13/2009 7:27 AM (GMT -7)   

Lucy, I bookmarked your link!    Thanks!  yeah

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


ILHubby
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 5/13/2009 10:04 AM (GMT -7)   
After the wife left the GP's office in tears we're calling it quits with him too. The only problem is finding a good GP close. They are out there I hope ?

IronCladDaisy
Regular Member


Date Joined Jan 2008
Total Posts : 45
   Posted 5/13/2009 12:44 PM (GMT -7)   
Thanks so much for all the support, and for the link Lucy!
 
I'm only about 30 minutes away from a decent sized city with a college and a couple of hospitals, but the two that my insurance will pay for require a referral to make an appointment, so finding a PCP that's willing to work with me a little more (or at least give me a referral to somone who will) is the first order of business.
 
Not too much longer to wait for the sleep appointment, it's on the 27th, so hopefully that doctor will have some useful info.
 
Jeannie, you're so right about the low end doctors, lol. And even some of the top ones aren't much better. Being a great test-taker does not make someone a great doctor. The doctor I had before this one was a really bright top-of-his-class kind of guy, but his ego was so big that he just disregarded a huge portion of what I said, too. I watched him write things down in my medical record, and it was sort of like he came to some conclusion about my health, and then wrote statements to support his ideas. They were all things that were technically true, but the focus was really skewed.
 
This doctor, I think is really just lazy. He doesn't want to be bothered by things like new information or anything out of the ordinary. Or even figuring out dosages for children's antibiotics. When my son was sick a few weeks ago, this same doctor wrote him a prescription for antibiotics at the adult dose. He's 5 years old and weighs about 45 lbs, and thankfully the pharmacist caught that mistake, called the doctor and got permission to dispense the correct dose. Our pharmacist is great.
 
And it's not that I think the doctor should necessarily think that everything I suggest is worth trying, but he should at least consider the merits and risks of this stuff instead of cutting me off :P
 
The hand pain, I suspect is a combination of things. The same women in my family that have had arthritis early on have also had joint hypermobility, myself included. Heck, my eighty year old grandmother can still bend over and place her palms flat on the floor without bending her knees. So I'm guessing I have a little bit of the same arthritis, and the fibro probably makes it feel a lot worse.
 
You've got my sympathy too ILHubby, we've got to beleive there are some doctors out there that have the right combination of brains and compassion to do a decent job. Years ago I had one that was great, but she moved a long distance away. So they're out there, there are just a lot of really bad ones to wade through. Keep trying, I keep telling myself it'll be worth the trouble to find a good one!

lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 5/14/2009 3:33 AM (GMT -7)   
Daisy--
Could you scan or add the link for that topamax article you were talking about? Sounds interesting and I am on it. Thabks and good luck with your search for a new doc!
lost in philly

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibromyalgia, Endometriosis, Migraines, Asthma, Chronic Fatigue

Topamax, Morphine, Effexor, Abilify, Crestor, Resoril, Loestrin, Imitrex

B12, Magnesium, Melatonin, Omega3
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Knowing without doing is like plowing without sowing."


IronCladDaisy
Regular Member


Date Joined Jan 2008
Total Posts : 45
   Posted 5/14/2009 10:47 AM (GMT -7)   

Philly, if you google "topamax neuropathic pain" or "topiramate neuropathic pain" you'll get quite a few articles, and it appears that quite a few of them have made their way into peer reviewed journals, such as this one: http://www.ncbi.nlm.nih.gov/pubmed/12514458

A lot of them focus on the pain that goes along with diabetic neuropathy, but I know some of us, myself included, have similiar types of nerve pain, so it seemed like it might be worth a shot.

Especially since nearly everything else on earth makes me drowsy, and I've got enough fatigue without adding to it with medication, lol.

 


Daisy
 
Fibromyalgia, Joint Hypermobility, Megaloblastic Anemia, Migranes, Depression
 
Vitamin D, Vitamin B-12, Topirimate, Wellbutrin


K9
Regular Member


Date Joined Nov 2008
Total Posts : 263
   Posted 5/15/2009 3:12 PM (GMT -7)   
I have read all the replies, but wanted to respond to the OP. I'm so sorry that your doc made you cry with either his attitude or lack of medical response...that really sucks. The only advice I might offer is that if you go see another doctor, just keep telling him or her your symptoms over and over - and keep making appts. if you get no relief from your symptoms. As soon as patients start either diagnosing or prescribing (suggesting drugs) most doctors get their hackles up. Yes, it's immature of them. Sad but true. But if you can keep going until THEY diagnose you and treat you properly, it will pay off in the long run. Just a thought is all.

I hope you're feeling better about it today.
I have Fibromyalgia, and nothing else!
I take Lyrica 225 mg/day and Tramadol (150mg time-released) and amytriptilene 7.5mg


Starynight
Regular Member


Date Joined May 2009
Total Posts : 51
   Posted 5/17/2009 4:58 PM (GMT -7)   
I am terribly sorry for the jerk doctor you have you really need to get a new doctor, i have been through many, I had a rheumy who use to spend the whole apointment screaming at me... saw her twice.  Just have hope and as much patience as you can, your health is very important.
 
But I have a question, I am sorry if you may have explained this before I am new here, but Did you symptoms start before you started the Topamax?

Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 5/17/2009 5:18 PM (GMT -7)   
That doctor is an IDIOT! If you can find another one please do, if not sue his  and all the other ones to. Go to a different town or city if you have to find another doctor. OMG! I just want to step all over his .....well... you know....
 
HARA

Post Edited By Moderator (Sherrine) : 5/17/2009 8:37:22 PM (GMT-6)


Marciea
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/17/2009 9:11 PM (GMT -7)   
I am experiencing the same thing. I have pain in my feet and hands the most, but also have pain in my neck and shoulder areas, my back and hips. But my doc doesnt listen to me. I went in this last time with a list I had writting down to discuss with him but he just dismissed everything. I asked him if he could recheck my RH level to see if its RA because a previous doc of mine said that I had RA but this doc just says, "I don't think thats it", and then tells me to stop taking my simvastin for cholestorol and see if that takes the pain in my feet away. Duh, the foot and hand pain started about 2000 and I didnt start the simvastin until 2007. But I did it and it didnt stop the pain so I am back on the meds and now what. Wait another three months to go in there for the same thing. No, I need to find a doctor who will LISTEN to me. I go in there, and the only thing he wants to discuss is my throid, of which he has just doubled my leventhoroxin. I was taking 150 mcg but now he wants me to take 300 mcg. That just sounds like an aweful lot, although it has given me more energy, the downfall is that now I have more energy which now I have more pain because I can do more now. What a vicious cycle. I want to ask my doc about fibro but am afraid he will just dismiss this as well.

One thing I do know is that I have been in pain since 2000, thats 9 years of my life spent in pain with no relief and I really just cant take it anymore. Any people dont understand. The think I fake, they think my weight is due to me being lazy, and etc. My own husband accused me of faking. I can't take it anymore.
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