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Old 06-24-2011, 09:48 PM   #1276
tiggspring
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I was invited to a seminar "psychological and physiological change associated with a brief behavioral intervention in patients with fibomyalgia"

Its about how Cognitive behavioral therapy CBT can help with FMS. CBT is just a fancy way of saying if you change the way you think of a problem you with change how you react and improve how you feel about/deal with it. A good example is AA's fake it til you make it. Fake being sober until one day you are no longer acting but actually a recovering alcholic.

CBt was my prefered way of helping the troubled families I treated beacause it is a very practical goal oriented way to deal with things.

Anyway my reaserching this seminar led me to a web page I used alot when I first got sick Medscape. It has a great reputation and is a clearing house for both patients and Dr's. It takes a little time to get the jargin. But with some patience you will find you understand more than you think and it can help talking to Dr's in their language.

What caught my eye was studies on the HGH human growth hormone (think body builders) and links to migraine. Thought the newbies might like more places to find info.

http://www.medscape.com/resource/fibromyalgia
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Old 06-26-2011, 03:15 PM   #1277
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Really???? Wow small world. We will have to meet up for drinks while kids in clubs.
Drinks? Sounds fabulous!!

Also, just wanted to say, how much I appreciate this thread. The support helps me, get through the tough days. Thanks!
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Old 06-26-2011, 08:28 PM   #1278
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Drinks? Sounds fabulous!!

Also, just wanted to say, how much I appreciate this thread. The support helps me, get through the tough days. Thanks!
I hear they have a drink of the day. Somthing fruity and about $3 off the usual $7 price. I'll be drinking something new every day mmmmm

Totally agree about thread. Thanks tocherie Great to have a place
to share little victories and major gripes with those who get it
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Old 06-27-2011, 08:22 PM   #1279
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New easy to ready article with the latest thinking of what may make us prone to FMS. I have almost all the factors. So if its not a virus they may be onto something. Scroll down article page for more info if your interested.


http://www.everydayhealth.com/fibrom...&ncid=webmail5
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Old 07-02-2011, 05:56 PM   #1280
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Red face Help Please!

The family and I will be heading to WDW in 20 days and I was diagnosed last august. I am now starting to get a little nervous about the physical toll of walking. I want this to be the perfect vacation since it will be the kids first time. Please any advise will be greatly appreciated.
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Old 07-02-2011, 11:47 PM   #1281
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Originally Posted by cvance23 View Post
The family and I will be heading to WDW in 20 days and I was diagnosed last august. I am now starting to get a little nervous about the physical toll of walking. I want this to be the perfect vacation since it will be the kids first time. Please any advise will be greatly appreciated.
Cvance

First dont panic those of us here have there and made it through


We all have our own way of managing WDW. Many here find that renting a scooter works for them. Others adjust there meds or keep their schedule light. The first step is knowing your limitaitons and adjusting for them. I had a very detailed plan that worked great for me and may give you some ideas.

Here are a few things off the top of my head.

Hot showers both am and pm to keep your muscles from locking up.

Get a GAC Guest assistance card. It can help cast member place you in a cooler place...find a seat etc while you wait for your ride. I never needed mine becasue of Ridmax but it gives cast members opetions to help you. They can be picked up at guest services. just explain you get tired/ heat intolerant etc and may need assistance. They will recomend scooter...but persist no Dr note neede but I had one.

Managing your fibro has to be the first priority of the family ...over everthing I know thats hard but consider this. Johny wants one more ride and you know you are cooked. you give in and next am you have crashed...trip ruined. Johny wants one more ride you say we have a big day tomorrow and leave....feeling much better in am....you caring for self first means johny had great trip less one ride...big deal. (easier said then done and why knowing your limits it critical at WDW)

Use Ridmax! this saved us a ton of time and kept kids from fighting because we always went by the list. even when my DD was 4 she understood that she didnt want to wait in lineIt also made pacing easy on our May trips we aveaged 5min walk 5min wait- ride then repeat this was perfect for managing pain and fatigue. everone knew there top three things were on the list and garrenteed..rest was gravy

Get in EARLY then either go back to hotel if you are close or put a show ie mickeys philharmagic and sitdown lunch with a secound show ie laugh factory...result? 2+hrs resting in ac. If you think it through you can do this in all the parks.

Consider all sit down meals be lunch or early supprer to beat the heat and fatigue.

In MK use train to your advantage. Divide park into two days if you can then use train to ride to Adventureland/frountier land one day secound day use it to leave Tomorrowland.

Pack in advance. Was mostly packed 3 weeks out. Packing is Exhasting so dont leve it for last minute.

Now I had to do two extream things that worked for me. First I take all my meds prn (as needed) so I can stop taking them without consequence. Since my meds stop working over time I stoped all meds for several weeks Major pain with benifit for me...my meds worked great on the trip. Now Not many of us can do that but it is an option. I also put myself on self imposed bedrest for a week almost two. Now I did get meals and watch my kids but NOTHING EXTRA. no lessons, parties etc. My energy was being saved for Disney. Here's to Feet up

I had one fantastic trip and a second decent trip. Had issues only because my kids had majorly acted up on the trip zapping my energy


If you are in a car dont forget the bengay and get a heating pad that plugs in to car. My kids think bengay is my perfume of choice on trips

Dont start anything new or load yourself up before your trip. Pace your self in a way that works for you both before and during your trip and you will be fine.

First task make lists of your limitaitons and brain storm how to keep them in check. Then slowly start packing.

YOU WILL HAVE FUN!
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Old 07-04-2011, 08:43 AM   #1282
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HAPPY 4TH OF JULY!
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Old 07-04-2011, 09:55 AM   #1283
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Happy 4th to all! Sorry I have been MIA.... Hope you guys are all ok. Will catch up soon.
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Old 07-11-2011, 09:08 PM   #1284
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Quote:
Originally Posted by tiggspring View Post
Cvance

First dont panic those of us here have there and made it through


We all have our own way of managing WDW. Many here find that renting a scooter works for them. Others adjust there meds or keep their schedule light. The first step is knowing your limitaitons and adjusting for them. I had a very detailed plan that worked great for me and may give you some ideas.

Here are a few things off the top of my head.

Hot showers both am and pm to keep your muscles from locking up.

Get a GAC Guest assistance card. It can help cast member place you in a cooler place...find a seat etc while you wait for your ride. I never needed mine becasue of Ridmax but it gives cast members opetions to help you. They can be picked up at guest services. just explain you get tired/ heat intolerant etc and may need assistance. They will recomend scooter...but persist no Dr note neede but I had one.

Managing your fibro has to be the first priority of the family ...over everthing I know thats hard but consider this. Johny wants one more ride and you know you are cooked. you give in and next am you have crashed...trip ruined. Johny wants one more ride you say we have a big day tomorrow and leave....feeling much better in am....you caring for self first means johny had great trip less one ride...big deal. (easier said then done and why knowing your limits it critical at WDW)

Use Ridmax! this saved us a ton of time and kept kids from fighting because we always went by the list. even when my DD was 4 she understood that she didnt want to wait in lineIt also made pacing easy on our May trips we aveaged 5min walk 5min wait- ride then repeat this was perfect for managing pain and fatigue. everone knew there top three things were on the list and garrenteed..rest was gravy

Get in EARLY then either go back to hotel if you are close or put a show ie mickeys philharmagic and sitdown lunch with a secound show ie laugh factory...result? 2+hrs resting in ac. If you think it through you can do this in all the parks.

Consider all sit down meals be lunch or early supprer to beat the heat and fatigue.

In MK use train to your advantage. Divide park into two days if you can then use train to ride to Adventureland/frountier land one day secound day use it to leave Tomorrowland.

Pack in advance. Was mostly packed 3 weeks out. Packing is Exhasting so dont leve it for last minute.

Now I had to do two extream things that worked for me. First I take all my meds prn (as needed) so I can stop taking them without consequence. Since my meds stop working over time I stoped all meds for several weeks Major pain with benifit for me...my meds worked great on the trip. Now Not many of us can do that but it is an option. I also put myself on self imposed bedrest for a week almost two. Now I did get meals and watch my kids but NOTHING EXTRA. no lessons, parties etc. My energy was being saved for Disney. Here's to Feet up

I had one fantastic trip and a second decent trip. Had issues only because my kids had majorly acted up on the trip zapping my energy


If you are in a car dont forget the bengay and get a heating pad that plugs in to car. My kids think bengay is my perfume of choice on trips

Dont start anything new or load yourself up before your trip. Pace your self in a way that works for you both before and during your trip and you will be fine.

First task make lists of your limitaitons and brain storm how to keep them in check. Then slowly start packing.

YOU WILL HAVE FUN!
Thank you SO much for this! I was diagnosed with Fibro/CFS and RSD in early 2000, after a nasty bout with shingles.

I too, am so nervous about going to WDW. I want to take my dear granddaughter and I know she'll love it but I worry about how I will do. With me, the main problem besides the overwhelming (at times) fatigue, is the neuropathy in my legs. Some days it's not so bad but other days it's just almost more than I can bear. My legs will be/or feel icy cold on the outside, even if it's 80 degrees out but the inside of my legs feel like the bones are being used as logs on the fire.

I was on Neurontin for many years but the side effects just got to me so when the doc went to put me on Lyrica, I decided to see if I felt worse/better or the same without it. I felt the same, so skipped the Lyrica. Would like to try Cymbalta, see what that does for the pain.

I also worry about the "crash". I can be okay for a few days and then, "wham"--I am out of the game. I've learned to flow with the adrenaline spikes and use them, since I am going to crash no matter what. It's just no predicting when the crash will happen. Or when my legs will just give out.

VERY nervous.......
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Old 07-11-2011, 09:46 PM   #1285
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Quote:
Originally Posted by KrazyKollector View Post
Thank you SO much for this! I was diagnosed with Fibro/CFS and RSD in early 2000, after a nasty bout with shingles.

I too, am so nervous about going to WDW. I want to take my dear granddaughter and I know she'll love it but I worry about how I will do. With me, the main problem besides the overwhelming (at times) fatigue, is the neuropathy in my legs. Some days it's not so bad but other days it's just almost more than I can bear. My legs will be/or feel icy cold on the outside, even if it's 80 degrees out but the inside of my legs feel like the bones are being used as logs on the fire.

I was on Neurontin for many years but the side effects just got to me so when the doc went to put me on Lyrica, I decided to see if I felt worse/better or the same without it. I felt the same, so skipped the Lyrica. Would like to try Cymbalta, see what that does for the pain.

I also worry about the "crash". I can be okay for a few days and then, "wham"--I am out of the game. I've learned to flow with the adrenaline spikes and use them, since I am going to crash no matter what. It's just no predicting when the crash will happen. Or when my legs will just give out.

VERY nervous.......
I get adrenaline spikes too! sometimes from just talking to a friend on the phone I usually try to clean as fast as I can

Let me know if I can help with anything else. I planned my first trip for 2 yrs or so and it went really well. coming home though was a bear
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Old 07-11-2011, 09:58 PM   #1286
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Originally Posted by EDuke98080 View Post
Happy 4th to all! Sorry I have been MIA.... Hope you guys are all ok. Will catch up soon.
Good to see you around! I'm stable and losing weigh Down 12lbs son only 38 to get to last years wdw weight.

We go to Ocean City next week so I wont be around. Kids know we are going somewhere but dont know its the beach. We havent been to a beach in 5yrs. So they are just so begging to go.


Sending Pain free vibes and pixie dust to all
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Old 07-11-2011, 10:01 PM   #1287
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Quote:
Originally Posted by KrazyKollector View Post
Thank you SO much for this! I was diagnosed with Fibro/CFS and RSD in early 2000, after a nasty bout with shingles.

I too, am so nervous about going to WDW. I want to take my dear granddaughter and I know she'll love it but I worry about how I will do. With me, the main problem besides the overwhelming (at times) fatigue, is the neuropathy in my legs. Some days it's not so bad but other days it's just almost more than I can bear. My legs will be/or feel icy cold on the outside, even if it's 80 degrees out but the inside of my legs feel like the bones are being used as logs on the fire.

I was on Neurontin for many years but the side effects just got to me so when the doc went to put me on Lyrica, I decided to see if I felt worse/better or the same without it. I felt the same, so skipped the Lyrica. Would like to try Cymbalta, see what that does for the pain.

I also worry about the "crash". I can be okay for a few days and then, "wham"--I am out of the game. I've learned to flow with the adrenaline spikes and use them, since I am going to crash no matter what. It's just no predicting when the crash will happen. Or when my legs will just give out.

VERY nervous.......
I'm really new to this thread, too. I just wanted to say I get the exact same thing in my legs and my feet! I'm on Neurontin for it, too. So far, no side effects thank goodness. I've been on it since about April. I'm on a few other meds for other problems and they are playing nice together right now. I'm going to see a new doctor (rheumatologist) for the first time the day after I return from my WDW trip.

I'm really nervous about my trip, too. I've gone back and forth a million times on whether or not to get an ECV. I'm bringing phone numbers in case I decide while we are there that I need one.
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Old 07-11-2011, 10:06 PM   #1288
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Pain free vibes!!
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Old 07-12-2011, 07:49 AM   #1289
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Hi everyone,

I'm new to this list and wanted to say hello.
My doctor never told me when I was diagnosed. I was at an appointment and she asked, "So, how's your fibromyalgia doing?" I looked and her and said, "My what?" She then explained to me what it was and that I had had it for years. Gee, it would have been nice if someone had told me about it.

My family is planning our first vacation ever to WDW followed by a cruise. We plan on one day in Epcot, then a 7 day cruise. My DD had cerebral palsy and uses a wheelchair and is completely dependent, but mentally fine. I am so worried that I won't be able to walk around the park and the ship without heavy doses of pain meds. I'm so glad I found this list. I look forward to learning a lot.
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Old 07-12-2011, 07:12 PM   #1290
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Hi everyone,

I'm new to this list and wanted to say hello.
My doctor never told me when I was diagnosed. I was at an appointment and she asked, "So, how's your fibromyalgia doing?" I looked and her and said, "My what?" She then explained to me what it was and that I had had it for years. Gee, it would have been nice if someone had told me about it.

My family is planning our first vacation ever to WDW followed by a cruise. We plan on one day in Epcot, then a 7 day cruise. My DD had cerebral palsy and uses a wheelchair and is completely dependent, but mentally fine. I am so worried that I won't be able to walk around the park and the ship without heavy doses of pain meds. I'm so glad I found this list. I look forward to learning a lot.
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