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Posted 5/25/2012 6:40 PM (GMT 0)
Hello to all here.  I hope I'm in the right spot... I really don't know where to go or what to do at this point.

First a little background...

I am a 42 year old woman who is overweight but active.  Married with two children and working at a bookstore.

I have always had an extremely high tolerance for pain.  Including natural childbirth and once sitting through a root canal with no pain meds because I didn't realize they weren't working well and I just thought it was supposed to be uncomfortable. lol

The last two years have been ones of increasing misery for me.

Daily pain, nearly impossible to move in the mornings for several hours after waking.

Horrid face pain in the joints of my jaws. (Three oral specialists and an ENT have determined I do not have TMJ), I could go on and on with the problems I've been having.

I've been diagnosed with FM and am trying to handle it on my own.

My problem currently lies with what my Dr. believes is some kind of arthritis.

Does anyone here have concurrent diagnosis of FM with RA or Lupus?

I just had a nightmare visit with a rheumatologist and left the office sobbing.

She did not take me seriously, or my test results.

She told me I was fine and that 'only you can determine if you are making this all up or not'.

I was told that if I weren't overweight none of this would be happening to me.

It was absolutely devastating.

Does this happen often?

Is it hard to be taken seriously by physicians?

I have very rarely gone to the dr in my life because I've always been healthy (aside from being overweight) and I'm just stunned and depressed and left feeling like I'm never going to get to the bottom of what is happening with me.

Thank you in advance for any comments and for letting me whine here.

 

Posted 5/25/2012 8:14 PM (GMT 0)
Yes, it happens quite frequently. Doctors don't believe fibro is real. They should go back to school for refresher courses! There have been many studies on this, still going on. It's recognized by all the major medical societies. Currently they think is is an issue with the central nervous system.

Or at least they should try to hobble a block in our sneakers. In the morning. With a low pressure system moving in.

While your weight may prevent you from being as active as you'd like, it has nothing to do with fibro. The symptoms for lupus are similar, I don't know much about RA. I do know there are tests for both.

Find a new rheumy, or go to a pain management doc. And think about notifying your state medical board about this barbarian you just saw.

Good luck, and welcome!
Posted 5/25/2012 8:56 PM (GMT 0)
Spookiesmom is right. It happens all the time. It happened to me for years. I kept going back to the rheumatologist and she kept telling me my problem was osteoarthriitis. I had an extensive workup for RA and lupus which was negative. I went through 2 total knee replacements and they actually biopsied tissue from my knee for RA. I have alot of upper back pain, knots, joint pain, depression, muscle aches and pains. I have a wonderful primary physician who I have never brought all this up with before but i unloaded on her a few weeks ago. I was so depressed from the pain, and fatigue. She said, "honey, sometimes us women just need some extra chemicals for our brains to help us" and told me I was about to go into a full blown Fibromyalgia flare. I knew i had it but no doctor would recognize it. I wanted to jump up and hug her. she started me on Celexa and it is helping me alot.
Definitely find a new doctor. Ask around, esp if you know somebody else who is being treated for Fibro. Alot of doctors don't acknowledge the diagnosis. Best of luck to you!
Posted 5/25/2012 9:02 PM (GMT 0)
Welcome couple- you found the right place. My heart hurts for you as I read your post. I know many of us have been in your shoes too many times. It hurts to sit in a Dr. office and not feel validated. The stiffnesss and depression are very common to fibro. It took me many years to believe all these symptoms are fibro only. I was this site that gave me hope and support to get myself together.I had actually had to go to my Dr. with what I learned here. I started to take one symptom at a time and figured out a remedy for it. You will see that we all react different to the treatments. Most everything I tried work for me. It took some time because this different happen overnight. I still have pain, fatigue, depression, but it so much more manageable now. I hope you can find some hope and a Dr. that you can trust in. Educate yourself as much as possible on fibro also.
Posted 5/25/2012 9:28 PM (GMT 0)
Thank you all so very much for your kind replies.
I have a return visit scheduled next week with my Internist again so I can discuss the Rheumatologist visit with him.

Currently I am taking Celebrex but it doesn't seem to be really helpful. I have a lot of leftover pain so I'm wondering if I need to switch to something else.

I am coming down from my shock at the outcome of the appt this morning. I just was so devestated to be brushed off and to actually have it suggested that I was making this up or that it was all in my head was just so astonishing to me.

She did acknowledge that I have fibro but said that she would not treat me for it until I have lost weight because she thinks it will go away on its own if I drop 50 lbs. lol

Horrible catch 22 isn't it?
You need to exercise to lose weight so you can feel better but you can't exercise to lose the weight because you feel so bad! lol

Anyway, thanks again!
Posted 5/26/2012 1:25 AM (GMT 0)
Hello Coupie, welcome to the forum.

I am seeing red as I write this, after reading how you were treated. Inexcusable, especially from a rheumatologist! What is wrong with these people?? Oh, and don't you love it when someone else tells you "you're fine"?  skull   Gee, thanks!  Grrrrrr.  If only she could feel what you do for 1 week.... 

I went through the runaround too, many years ago, being made to feel crazy, stupid, lazy, you name it. Finally I found a great doctor (an internist) who suggested fibro - I'd never heard of it. Anyway, fibro has absolutely nothing to do with weight! If anything, I'm too thin, and I'm not alone. So much for that theory.

Take a look at Fibro 101, first (or 2nd) thread on this forum, and you'll find more info than you can process quickly - some of our moderators have done a superb job of filling it with helpful material. I still haven't gotten through it all, and I've been here for years!

Don't give up - there are good doctors out there. I'd ask if they believe in fibro before you even waste your money seeing them. And please, vent away! We really like to help eachother here.

Debbie
Posted 5/26/2012 2:26 AM (GMT 0)
Couple- Dont give up! Please look for another rheumatologist! I wouldn't give her another dollar. There are Dr's out there that can help you. Right down your main symptoms to your internist and find out how you can best treat them. Once your pain gets under controlled you will see how other things get better.
Posted 5/26/2012 5:27 PM (GMT 0)
Thank you all so much.
I am slowly coming down from my shock at the appt yesterday.
I will be seeing my Internist on Thursday so I'll see what direction he will point me in.
He has always taken the time to listen to me and he takes my situation very seriously so I really feel he is a good advocate for me.
It will be very interesting to hear his take on what the Rheumatologist said.

I thank you all again for your replies.
Posted 5/26/2012 5:53 PM (GMT 0)

Hi, Coupie, and welcome!  Yes, you can have arthritis and lupus with fibro and jaw pain can be caused by arthritis, too.  I was just diagnosed with a rheumatic illness.  My back and neck pain is horrible and I thought it was from fibro and kept it under control with ibuprofen.  Well, ibuprofen shouldn't work as good as it does for me because fibro isn't an inflammatory illness.  I was continued on ibuprofen and am doing much better.  So, you can have arthritis going on along with fibro.

 

You need to find a good rheumy, too.  That's really pathetic what she said to you.  She most likely doesn't know much about fibro either even though it's recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, the World Health Organization, etc.  There are still doctors in the Dark Ages when it come to this illness so really do your homework when chosing physicians.

 

Be sure to read Fibro 101...the second thread on the forum.  There are good links to info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  All the links are good so do read them.  Knowledge is power.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine
Posted 5/27/2012 4:47 AM (GMT 0)
Hi there. I'm SO sorry that you had such a ROTTEN appt with someone who you put your trust in to take care of you!

As mentioned, you can absolutely have another condition on top of Fibro. If you're taking Celebrex that means you're taking an antinflammatory. Fibro is not a flammatory illness, so you are already being treated for something else. Now the pain reliever in the Celebrex (ibuprofen type) may be helping some as well obviously.

Lupus and RA are both easy to test for - so having a Dr. doubt the results just sounds plain old weird. A simple blood test will show if you ANA results are high.
Can the Dr. that diagnosed you treat you? Do you have other symptoms of Fibro besides pain?

I have really been fortunate as I have not had any Dr.'s that haven't fully supported me or "believed" in Fibro. They also all agree on what it is, (including my gastroenterologist amazingly) that our pain signals are miswired. The good thing (HA!) about Fibro is that there is no structural damage being done to our bodies.

Your first mission is to go back to Dr. #1 (diagnosing), see what your options are with that Dr. as far as treatment goes. Then if you need to move onto a rheumatologist you obviously need a new one. My GP treated me for a long time until she couldn't control my pain.

Your Dr. plays a KEY role is this journey so finding the right one that you feel confident in and comfortable with is critical. It's a long road for the Dr. as well so they have to be willing to travel it with you.
Keep holding on - there ARE many good Dr.'s out there. You just ran into a bad one!!

Jacey
Posted 5/27/2012 6:09 PM (GMT 0)
What kind of rheumatologist was THAT?!? I cannot believe you were treated that way!! I'd write more but having a pain day. I'll talk your ear off later
Posted 5/31/2012 4:57 PM (GMT 0)
I went back to my Internist this morning and was so relieved by seeing him.

He was upset for me that I had such a horrible experience.

He told me he really and truly believes that I have an autoimmune problem that is smoldering away in the background of all this and that it is very obvious that I'm genuine and not making things up in my head.

In the meantime we have decided to take an approach that will manage the pain and he put me on Savella to try out for three weeks.

In addition I'm taking Celebrex and 50,000 Vitamin D (the D is once a week).

Anyone else here tried Savella?

What did you think?

Hope everyone is having a good day!

P.S. I have managed to lose 15lbs in the last two months so that is some progress on that point at least!

Posted 5/31/2012 5:22 PM (GMT 0)
Hi there,
Yes it happens A LOT! I've been to 4 doctors about the pain. I was given a Fibro diagnosis and after visiting my 4th doctor they found degenerative Disc Disease in my cervical and lumbar region. The pain and tiredness is awful and I wish the best for you. What helped me out the most, was someone on this site posted this link, http://www.fmaware.org/site/News2549b.html?page=NewsArticle&id=7211. Doctors who know and understand fibromyalgia. I hope you can find one in your area.
Best of luck,
Izzy
Posted 6/1/2012 1:39 PM (GMT 0)
Well I certainly don't understand, either. lol
It's been a rollercoaster ride for sure. The last two years have been nothing but trudging from one specialist to the next to the next. In all I saw seven different doctors before I was able to find my incredible Internist.
God Bless my awesome dentist because he has stuck with me through this entire thing also when I kept coming back just positive that there was some horrible abscess he couldn't find in my jaw. LOL!
Two doctors suspect that I have Transgeminal Neuralgia which does have to do with the nerves in the side of my face.
The pain was just outrageous and it was the first time I've missed work in 13 years.

Started the Savella last night.
Was up until 3am. *eyeroll*

Taking my second pill this morning and will see if something significant happens with the pain.

Hope everyone has a great day!
Posted 6/1/2012 3:28 PM (GMT 0)
Hey Hun! I totally feel for you and so sorry drs are being rude... I have gone through that but don't give up you will find someone who know. I saw about your jaw pain and that reminded me of my sister. Just recently she began having extreme jaw pain and nerve pain but had no tender points or sleep problems. A dr told her she had fibro because I have it. She went to a nucca dr who took her MRI and gave it to a special chiropractor in new York and he had a closer look and said she didn't have tmj or fibro but a brain tonsil hanging down at the bottom of her brain causing a blockage to fluid... He can fix it and she doesn't have fibro at all just an old car accident injury caused this...
Posted 6/1/2012 4:59 PM (GMT 0)
Wow a brain tonsil!
Never in my life heard of that so I had to go Google. lol
I've had two ct scans of that area so I'm pretty sure if I had something that significant I'd have heard about it.
That is fascinating though so thanks for sharing it with me.

The jury is out on Savella so far.
I have some really odd head tingling with it and a bit of heart racing.
Of course I'll have to give it a while to see if I become accustomed to these side effects.
Pain level is down a notch or two but I'm cautious about attributing that to the Savella or if I'm just having a good day.
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