Questions for our 2010 Collaboration when Lumigrate's Top Fibromyalgia Experts Talk

My questions:

1. Do you see a trend in the terms 'chronic fatigue syndrome' and 'fibromyalgia' changing?  Reason for my question: I noticed when Dr. Oz did a segment last October, they focused on the word 'exhaustion', not 'fatigue'. Also, the latest CFS information I've seen now includes 'pain' as a symptom.  It seems to me the lines are getting blurred and it's becoming lumped: is this accurate or better to keep two distinct syndromes.   
2. With physicians in the US generally disliking  treating patients with a fibromyalgia diagnosis, do you see it as advantageous for patients to present and talk about 'exhaustion' instead of 'fatigue', and 'pain' instead of 'fibromyalgia'?  There's a reason I joke and call it 'The F Word'. 
3. Fibromyalgia as a dx. results in people like myself becoming 'uninsurable'.  What recommendations do you have for patients regarding how to get proper treatment and wisely playing the ICD-9 game when using insurance-based medicine.  (And yes, it was very FUNny when the insurance agent told me five years ago I was an 'automatic knockout' -- I told him at my age that is a GOOD thing to hear.  He appreciated my sense of humor.  

I appreciate people taking the time as I just did to ask some questions, and to the doctors who are going to participate in this event, Deirdre Rawlings, Jerry Rand, and Wm. Marc Spurlock.  Looking forward to listening to it when and where it is available (details will follow here)!

Mardy, I think these are great questions for the doctors. I would add two more:

1) How much weight are they assessing to the findings of XMRV and Chronic Fatigue Syndrome by the Whittemore Peterson Institute & it's scientists as opposed to the total shutdown of results in the United Kingdom? And

2) How differently do they recommend "treating" Fibromyalgia patients and Chronic Fatigue Syndrome patients? (Taking into account that there are now some RX medications for Fibromyalgia and so far none for CFS. Still these meds are only for symptom relief and, as far as I know, do not address a cause or a cure.) So exactly how do they get their patients some relief and back on the road to recovery??

NOTE: I am one of the other participants working with Mardy on these teleseminar presentations in honor of raising awareness for May 12th. I look forward to working with everyone, interviewing my guests, being interviewed and learning so much fabulous information! Lumigrate will truly be a hub for Fibromyalgia and Chronic Fatigue Syndrome information.

Cinda Crawford, host of the Health Matters Show

I'd like to know why the doctors think there are the behavior changes that go along with fibromyalgia, from what I have experienced.  Is this part of the reasons doctors generally don't like treating patients with fibromyalgia?

It seems that I got more sensitive to my feelings being hurt and more easilty frustrated, and then I had behavior changes which included tearfulness.  I think that had to do with frustration and being scared at some level as well as dealing with pain and fatigue and the frustrations of the limitations on my life, but that was in the early stages when I was in my mid thirties, and I now wonder if it wasn't something to do with hormones. 

My family was not understanding and while they noticed that I wasn't feeling well and was trying to act like nothing had changed, they didn't appear to try to learn about it really.  Back to that 'invisible illness' piece.

Thank you for taking my question, and I look forward to any answers you are able to provide here or on your interviews.   

Good to see people asking questions here!  Thanks!

Cinda -- I appreciate your willingness to 'collaborate' when I asked!

That's sure what Lumigrate appears to be turning into and I like the word 'hub', but since it's internet then I try to be all impressive and say 'portal'.

I'm looking forward to seeing how your segment comes together as well... this is SO COOL. Thanks to you and EVERYONE who is participating and that mostly includes anyone who is reading who is going to listen and write who has an interest in fibromyalgia for them selves and others.~~ Mardy

First off I would like to thank you for taking time to answer our questions in advance..

My question is.. What can we as Fibromyalgia/CFS patients do to educate some doctors more about our illness? Why do I ask this question? MY GP is leaving his practice, and we were discussing where he was moving to, and I asked if he would he be opening a new pratice where he was moving to. He said "maybe", and the conversation went on.. Before he left the room, I said, you know, maybe you should open a practice to help people with fibromyalgia, he looked me dead in the face and said " People with fibromyalgia are crazy ".

I was floored to say the least. After all the awareness, and such, there are still doctors that call patients "crazy". So I guess he was humoring me by treating me...  I'm not saying all doctors do this. But for the ones that do, what can we as patients do to help educate the ones that do not believe in this illness.

 Thank you again...

Ms F, above ... related to how doctors can learn about fibromyalgia -- I sincerely hope that everyone who is reading this will hit the 'print' button on something they see on Lumigrate that they think their doctor would be impressed by, so that the doctors learn about Lumigrate and perhaps come to learn.  That's ultimately what my thought process was with starting a website such as I have: the patients are the ones who go out online looking for something about their condition, then they can teach the doctors -- THEN the doctor changes how they treat other patients and pretty soon LOTS of people have been helped.  So remember, print, email, post, give away........ tell others.

 Everyone knows that I have fibromyalgia, but that was not always the case -- it has been a process of my basically having to come out about it with the clinic where I first had started my own company and contracted.  I had so many things going on and they had someone that specialized in each aspect ... TMJ, vestibular, necks.  And I treated patients with fibromyalgia and they ARE difficult; they're very frustrated, they aren't thinking clearly, and they have a multitude of needs of body, mind, spirit and that just does NOT fit with the typical types that we have had to move to in order to keep our clinics afloat.  So I understand why the providers want to run the other way sometimes -- I don't agree with it nor am I saying it is right, but I understand why, because THEY are under about as much stress to their body, mind and spirit with the way the system is right now.  What I did extensively was teach my patients how to be good consumers; be organized, have a plan and a list, take notes and bring and advocate to appointments or a recorder and etc. 

I had several experiences about five years ago which likely were contributing factors to the beginnings of the wheels turning for what you now see as Lumigrate. 

I went to a seminar about shoulders by an orthopedic surgeon.  I was so very impressed when along with rotator cuff, they were going to talk about fibromyalgia!  It was a total surprise and I was SO excited, as I'd been having a lot of difficulties getting therapists to get behind wanting to have a fibromyalgia program in the clinic I was at (see below).  The doctor was younger, very articulate, didn't joke around at all but was very low key.  And when he started to talk about fibromyalgia his first slide was of a toddler standing in a toilet with toilet paper spewing out of the bowl, and he said something like 'by the time you've treated 10 patients with fibromyalgia a week you wish you were this guy'.  I will never forget that moment.  I really didn't know what to do!  I could NOT BELIEVE what I had just heard. I really didn't know what to do with it!  I went home that night and literally thought about dropping out of being a health care provider, I was so disgusted and I realized I was feeling embarrassed for my profession!  But then that wouldn't be providing solutions would it?  So here I am.  Here you are, and here Lumigrate is, doing our best to all make changes and make this situation better.  

My other story that I was more involved with was that one of the rheumatologists in town told me that he wanted to send his fibromyalgia patients to the clinic I was with because he couldn't find anyone in town at that time who could appropriately treat them.  He went over a model that he saw of how patients with FMS should have a whole team of providers and rotate through them every month/season/year to have the collaborative approach that he felt they needed.  That is somewhat reflected in the YOU model on the home page of Lumigrate.  But there were two camps in the clinic -- PTs that wanted to see patients with FMS and those that didn't.  When I started seeing the first patient that I had referred to me, a 17 year old former high scholastic and extracurricular achiever, and we worked on 3 pieces of equipment for up to 2 minutes at a time with breathing and stretching and education in the breaks between, there was some discussion about how the PTs were just so used to orthopedic patients and how to do that type of treatment and do the billing and have that be approved and appropriate that they perhaps had tried to put the FMS patients into that model.  Ultimately, the clinic handled many patients with fibromyalgia quite successfully.  But what I mostly found when I started new patients that hadn't yet gotten started with our PTs, was they had been elsewhere for PT and it made them so much worse they just never went back, and so I asked the PTs in my clinic and they'd had the same thing -- so the providers cannot learn if they never hear the feedback.  So I think it's appropriate that the patients take responsibility for that and hopefully read this and go forward. 

I also had one of my doctors who hadn't seen me in a while so didn't recognize my name walk into the room and not even look at me and ask why I was in after so long just wanting a bunch of prescription refills.  Then he saw it was me and said 'oh, it's you' and backed off.  And in that moment I thought 'what happens to the average person out there?'.  I'm glad he did that because it was another one of the moments that lead to what I have chosen to do with my time, energy and money for the last few years in creating what you now see as Lumigrate.  So it is very rewarding to see these things being addressed here.  Thank you Faye and Deirdre and ALL.  Please write, people.  Get involved.  Get active, if it's just a little thing or a big thing.  Faye's time in posting that story and question will likely help many many people by advancing knowledge. 

But it comes down to the physicians being stressed and not knowing how to best treat FMS and so their patients often are pretty goofed up.  And nobody is teaching them effectively, but I hope that they will find out about Lumigrate from their patients.  So please do your part on that as well.  I hope I'm right that some WILL learn, and naturally we are still formulating information here, but we have a good start! 

~~ Mardy

Hello! :)

One time I was told that stress is what causing the symptoms of FMS. I understand that stress can do some crazy things to people and can definitely have a negative effect on them. However, at times when I am not stressed (even though they are rare) I still have those moments when I am very sore and tired.

I was wondering.... Does stress really cause the symptoms?

I believe that stress will aid in the symptoms surfacing, but not actually cause them.. What do you all think?

-Candace

Thank so much for responding.. I fully understand the need for more than one doctor; I had several. All to address different issues. I was a patient with this doctor years before I was diagnosed with fibromyalgia. I live in a smaller town where we have to travel at the least an hour to see specialists. I had a rheumatologist that was an hour away. My neurologist is two hours away. And thankfully my allergy doctor is here in my hometown.

This doctor suggested I just let him deal with my fibromylagia, so that I would be traveling less. Big mistake on my part, as I see now. I've been seeing this doctor since the early 90's. He treats me well for other things I go to him for. Colds, etc... Why suggest that you are willing to treat someone, if you do not believe in what's wrong with the person ? It was his suggestion, not mine. And then to say I'm crazy!? He not only insulted me, but millions of others as well.

 I presently don't take any medications for my fibromyalgia symptoms on a daily basis. Savella was the last drug I was on. The side effects were aweful for me. It might work for others, but not me. I'm working on lifestyle changes currently and trying to do it the more natural way. My mind-frame on this right now is: I can sit back and eat pills that do nothing for me and make me sicker, or I can change things that are the underlying cause. I chose to do the work to change. Why continue to take something that does nothing positive for me, in the end? Change is hard, but I already see some difference.

So now I'm without a GP and I will never allow another doctor that does not specialize in a condition to treat me for that condition.. We live and we learn...

I will say I no longer see fibromyalgia as the beast within. Even with all the pain, if brought a new life to me. I have to stop and smell the roses, it taught me to have more compassion for others. And, I believe, I'm a stronger person now. You have to be strong to deal with this.

 Thanks for responding ... I'm hoping others will bring up more questions as well...

 So by posting a comment this will also rise to the top of the heap, so to speak... I made revisions to 'dust it off' and I hope it's worth more people's time and energy to read! ~~ Mardy