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Follow-up on "Aging with FM"
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Mark Pellegrino, MD posted:
Good afternoon to everyone who's aged a week since this poll was posted (see original thread) I wanted to add my follow-up comments.

First, the final results from the 63 FMily members who responded:
Percentage who felt better over time: 16% (10 members), % who felt worse: 68% (43), % who are the same: 16% (10). These numbers are a little different than my accumulated experience with patients over time. Originally my experience was 33% in each category, but over time I am seeing more that report worsening, so my patient experience is now about 30% better, 40% worse, 30% the same (based on over 20,000 patients) But these numbers include those patients who I don't see regularly anymore because they feel better, and include many in the "same" category who have severe chronic pain, no better or worse.

So what accounts for the higher percentage of "worse" between my community patient group and our FMily poll group? (the "better" and "same" % were equally matched) There are 2 different populations. With my patients, I determined everyone's "response" based on follow-ups. In a poll, only those who respond are counted in the results. Statisically speaking, those with worse FM are more likely to be involved in a community support group (like WebMD) than those with better or same FM. So our poll pool is statistically stacked! (Say this fast 3 times correctly and you win!) I believe this predicts a higher percentage of "worse" responders, as the actual poll supported.

I find those who do better or the same over time are more likely to have the following characteristics:
1. Early diagnosis of FM after symptoms began
2. Younger age when diagnosed
3. Successful response to treatments
4. Fewer associated chronic conditions
5. Have flexible job situations
6. Able to follow through with a home program

Those who do worse over time are more likely to have the following:
1. A delayed diagnosis from the time symptoms first developed
2. No response to treatments, or non-compliance with treatments
3. Numerous associated chronic conditions
4. Stessful and physically demanding jobs without flexibility
5. Painful progressive osteoarthritis
6. Men whose FM came on rapidly and caused early disability
7. No successful, reliable home program

Osteorthritis is not felt to be a "cause" of FM, but it can make areas worse or more prone to flare-ups over time, and cause overall worsening. I'm seeing this more as I have been in practice a while and have been following the same people for a number of years.

Even though many are reporting feeling worse over time, I still think there is a silver lining present for most: our FM treatments are actually helping us and we are learning positive strategies. Compared to the person's pain level who is not getting fibro treatments over time, we are doing better. Even if we are getting "worse," it is at a slower rate than if we had no treatment. Or another way to look at it: We are doing better because we are treating our FM than if we were not doing anything at all.

OK, so maybe this is not quite a silver lining...more of an aluminum lining. But still, our fibro is what it is and we must make the best of our situation.

Take care. Feel better (or the same, if it's not too bad!)

Dr. P
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karenrugs responded:
Thank you Dr. P,

I so enjoy reading your posts. And re-reading this one especially.

I spoke with my rheumatologist about this the other day. I mentioned that it was my arthritic knees keeping me from doing exercise, walking comes to mind. She told me that the more we are inactive, the more pain we feel. I then said that it seems like the older I get the more pain I feel. She said it's because I'm less motivated. Which is true.

I feel worse,not from age, but from not doing anything. Which in turn is aging me more. She drained 28 ccs of fluid from one side of my knee and shot it full of cortiosteriod. After a few hours, it was amazing.. I could walk without pain.

Of course, the other side of the knee is still all poofy and tender but I walk without a lot of pain. YEAH!!

Thank you again,

Hugz,

Karen
A strong positive mental attitude will create more miracles than any wonder drug.
 
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dollbug responded:
Hello Dr. P.....MiMi in NC.....I know that I posted one time to this and I was sure I hit submit.......but I guess the post did not go.....(ok...perhaps there was a reason for this...I do not know)....

So you did the poll and provided the results to us....and now I am going to get a bit nosy here....and ask you....how have you coped since you met the wrath of the dragon? I think that you were in college, if I remember correctly and you were strong enough to finish college and go on to become a doctor.....so I am assuming you must have found a good doctor or perhaps you did your own research and figured out how to cope better....

So I hope you will share your personal experience on how you have managed to cope with FM.....do you have a good doctor now who treats you?....LOL....

I do enjoy your posts and all that you share with us FMers....
I know that from time to time.....I hop around the different exchanges here and invite people over to check us out...and I tell them what a wonderful asset we now have to our FMily.....a doctor who truly understands us....

Anyway.....I am going to hopefully hit submit and see if this will get posted.....

Thanks again.....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Socialwrkr responded:
I feel hopeful simply because there ARE treatments now. And we are gaining acceptance among the medical profession so we are getting treatments that may actually help.

I don't think there will be a magic bullet cure, but I do think as we learn about what fibro is, we can learn to manage it better and better.

Thanks Doc, interesting stuff!
Be Gentle on Yourself!!! ~~Aimee http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee http://www.lumigrate.com/ Fibromyalgia forum writer, Aimee
 
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BEACHAHOLIC responded:
Hi Dr.P
I too loved reading your poll, and am wondering two things: one do you see OA in young patients, and do you have many patients that utilize aquatic therapy, and if so what do you think about it's benefits.
Thank you for all you do.
Truly,
Annmarie/NJ
 
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alispazz responded:
Doc.

I checked the poll as soon as I got home, from my Sisters. Really was amazed it was still going after 9 days....you go guy!!!!!

I have an observation,based on little or nothing other than watching the post for the last 8 months...Those who tend to stay positive seem to have more of the not getting worse....Like I said for me not getting worse means that I try and continue life as much as possible the way it was....Somedays are so much harder than others but I refuse to just quit....

Also those who had a more physically challenging life seem to do better for a while longer than those who were/are sedentary.

Ali
Follow your heart and not your dreams..the dreams are from your mind and can lead you astray, the heart never can..SMOLOL Hugs Ali
 
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1rmouse responded:
Hi Dr. P. WOW I am amazed @ the results and conclusions on aging with Fibro. I was surprised to see that some of the Long Timers in the Fibro FMily are not better over all. I felt, since I do do feel much better than back when, that over time that Fibro symptoms stabilized somewhat making life with "IT" better for most. Guessing not ,(
I do feel better, but in my case I have taken advantage of every medication, lotion, potion and FM treatment out there to help relieve my symptoms so I can get on with my life, that I am going to have to chalk up my feeling better to being fast on my feet getting to those things that will cure what ails me, rather than to say I guess my Fibro symptoms have stabilized over time.
Ever the optimist I am hopeful for new and better treatments coming to us all sooner than later now that the medical community is doing so much research into FMS. ,)
Thank you again for posting the poll question(s) and the results.
Soft hugs going out to you today.
Linda R.
 
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Mark Pellegrino, MD replied to dollbug's response:
Hi MiMi,

You hit submit right!! LOL! I truly enjoy your posts as well and your kind sharing! I got my diagnosis during my 3rd year of residency whan I was 28 years old but I can remember back to a teenager when I started getting some early symptoms such as restless legs (told they were growing pains), bouts of unexplained extreme fatigue, inability to hold my arms up for long before getting pain, and some other symptoms.

I like how you say I was "strong" enough to finish schooling! I was motivated and determined and I never really felt fibro got in my way...I am lucky that my field is sedentary work and I'm supposed to use my brain not my brawn! I would not be able to do many jobs that my patients with fibro are doing. I tried to research and learn as much about FM as I could/can since my specialty treats people with chronic pain...and because I have a personal connection as well!

I have a very good PCP. I try to manage my fibro myself. I get to learn from my patients as well as trying to help them; how cool is that?! My fibro has remained the same over the years and has caused me to seek routines, more so than before fibro (whenever that was...so long ago...)

You and the rest of my FMily have been very helpful to me so THANKS back at you!!

Dr. P
 
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50FirstDates replied to Mark Pellegrino, MD's response:
Dr. P

I too, like Mimi, have been curious as to how you cope with your career with fibro. I hope I'm not being too nosy.

I know that being a doctor can be very demanding. Even if it is not physically demanding (which can simply be breathing sometimes with fibro), it can be demanding in time and hours, and of course, brain power.

Do you have flexibility to do your "doctoring" online, in the office, at the hospital, or all of the above? How do you focus and/or recall so much out of your head with fibro fog?

As an independent study teacher, I have flexibility, but only to a point. I can't call off too much with my students' appointments (which take up the week's schedule.) Nor can I simply ignore the fibro fog when I need to teach Algebra or recall material.

So, I'm curious...
Any tips or suggestions? (In addition to the ones already posted at this site.)
Courage doesn't always roar. Sometimes, it is the quiet voice at the end of the day saying, 'I will try again tomorrow.' -- Anonymous
 
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annette030 responded:
I think part of it is the whole "glass half full or glass half empty" way of thinking.

I look at your latest stats and see 60% staying the same or getting better, and only 40% are getting worse. The odds are still in our favor!!!

I am a positive thinker!!

Take care, Annette
 
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An_199159 replied to Mark Pellegrino, MD's response:
Dr. P, I am very new to this web site, but have found it so interesting especially knowing that a physician is experiencing fibro and is in pain management medicine as well. Thank you for taking the time from your schedule to help so many others.

I was very interested in reading that you have restless legs. I have had restless legs since a teen ager; and as the years pass by (now 72 years old) that problem is much worse. Do you attribute restless legs to fibro? My FP doctor has prescribed requip for restless legs, but it does not help. What would you suggest for restless legs, as it is becoming a really horrible problem for me.

I am wanting to find a physician who really has an interest in fibro. Do you feel a pain management physician is a good answer for me?

Thank you for considering my questions.

MagSam
 
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Mark Pellegrino, MD replied to An_199159's response:
Hi MagSam,

Welcome! Yes I would describe having fibro as "interesting!" I was diagnosed with it while in the middle of my training to be a pain specialist (I am a physical medicine and rehab doctor). I find this works both ways: I try to help you with fibro, but in turn, you are helping me manage better!

Any doctor who believes in you and your fibro could be a good help, regardless of the specialty. Well maybe a pediatrician wouldn't work for us! Pain management doctors and physical medicine doctors are usually pretty knowledgeable about FM.

My restless legs are much improved once I got into adulthood (quite a few years ago.....!) It is a common problem in adults with FM. Here is a nice article you may find helpful.
http://blogs.webmd.com/sleep-disorders/2010/11/fibro-and-rls-the-connection.html

Let me know if you have any more questions and thanks for finding us here!

Dr. P
 
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jendirks replied to Mark Pellegrino, MD's response:
dr mark my name is jennifer i am 38 years old and living and feeling like i am 190 years old. i have severe chronic back pain. it is so bad i can barley move. I have tried every single darn drug out on the market for fibro and nothing remotely helps with the pain. i am at this time taking 2 vicodins every 4 hours and that isnt even touching it really honestly every doctor i see sucks and doesnt know how to get rid of my pain. like i said i have tried everything physical therapy billions of drugs and nothing works what can you suggest for me. i live in rochester ny my zip code is 14428 can you recommend me a specialist in this area i could see. or tell me what i should do. i am so desperate i may drive to where you practice to see you.please help
 
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CLKWC1964 replied to Socialwrkr's response:
Aimee,


So good to see you here. How are you doing? Cat:0)
 
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Caprice_WebMD_Staff replied to CLKWC1964's response:
Hi Cat,

That post from Aimee was from over 11 months ago so it's doubtful she'll be responding. She hasn't hung around here for a while and, like you, I miss her.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell


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