Fibromyalgia Thread

[tiggspring]

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!

 

[tiggspring]

HAPPY 4TH OF JULY!

 

[EDuke98080]

Happy 4th to all! Sorry I have been MIA.... Hope you guys are all ok. Will catch up soon.

 

[KrazyKollector]

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.......

 

[tiggspring]

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

 

[tiggspring]

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

 

[carrie6466]

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.

 

[TLSnell1981]

Pain free vibes!!

 

[pag1164]

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.

 

[tinkerbellandeyor]

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.

 

[DisneysPixie464]

Oh my goodness I am so sorry I have been MIA for so long. I have thought of all of you often and hope things are getting better or you all.

WELCOME to all the newcomers to this thread it has helped me out so much throughout this past year and these ladies are wonderful

Things with me have been stressful and tiring I am still looking for a job and finding a good balance with everything I was doing well for a good period of time and was able to get so much done which made me very happy. These past two weeks have been hard with what seems to be a never-ending thunderstorm and have had a quarter of the energy I used to just two weeks ago. But this is summer and I'm hopeful things will get better soon

How is everyone doing? It's so exciting that quite a few of you are going to go on the Dream you will have to share all of the fun things and how you did on the ship. I'm so excited to go as soon as I can

Hope everyone is doing great this summer sending pixie dust and gentle hugs to everyone and another welcome to all the newcomers

 

[tiggspring]

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.

Welcome!!

Have you tried aroma therapy oils? My friend became an aroma therapist and custom makes blends. It was really surprising how mixing/matchng oil imediately changed how I felt. It took about an hour of sniffing to get it just right. Quite a nose work out Not a cure all but can take the edge off.

If you havent tried relaxation and meditation techniques this can help too. Sound mediations cds are much easier to work with. Find a sound you love like rain or whale sounds etc and focus on your breath or imagine your in a perfect space. Taking your brain away from the pain can help.

At WDW I took me time each am and pm for a shower. So important with the pain symptioms.

For me the joy of being at WDW was a great pain reliever. Comming home was a bear.

Sending pixie dust your way

 

[tiggspring]

Well I'm down 15lb and gettg lots done. Pain still issue but at least have energy to move


Off to Ocean city for our chepo vaca. Gotta save up for that cruise! By not staying on fri/sat Francis Scott Key resort gave me a night free! Free movies on the beach and lots of exploring of the Island with wild ponys. Now if I can get my kids to all eat half what they normaly do I might acturaly save a ton . For us food is half the fun so I guess I'll have to suck it up and pay some big bucks for seafood.

Sending Pain free vibes and pixie dust to all

 

[tiggspring]

Oh my goodness I am so sorry I have been MIA for so long. I have thought of all of you often and hope things are getting better or you all.

WELCOME to all the newcomers to this thread it has helped me out so much throughout this past year and these ladies are wonderful

Things with me have been stressful and tiring I am still looking for a job and finding a good balance with everything I was doing well for a good period of time and was able to get so much done which made me very happy. These past two weeks have been hard with what seems to be a never-ending thunderstorm and have had a quarter of the energy I used to just two weeks ago. But this is summer and I'm hopeful things will get better soon

How is everyone doing? It's so exciting that quite a few of you are going to go on the Dream you will have to share all of the fun things and how you did on the ship. I'm so excited to go as soon as I can

Hope everyone is doing great this summer sending pixie dust and gentle hugs to everyone and another welcome to all the newcomers

Tip.

If you think you want to go on the Dream book early!! I was looking in Feb 11 for June 2012. I had been told they were already selling quick. We had to wait six weeks to get up our down payment and the cost went up 20pect. Even worse my TA told me that she was glad I made my down payment when I did as april dates were already selling out and June wasnt far behind especially for my 5 person cabin. It sounds crazy but start thinking about it no later than 16 months out and be prepared for the $200pp downpayment.

 

[carrie6466]

Can I just say, in my neverending medical saga/source of frustration and stress, that I had to go for a CT scan yesterday for a 'stone hunt' looking for kidney/bladder stones? They didn't find any, but did have (yet again) other findings and now the doctor is saying I have IBS as well as every other thing ::groans::. They want me to go for a colostomy. And I woke up to my knee swollen like a balloon and both knees and thighs hurting so bad I could barely walk for about 2 hrs after I got up.

I'm starting to debate the wisdom of taking this trip! I haven't gotten an ECV or wheelchair, figuring we're doing a lot of breaks, but now I'm just not sure how this will work out with my knees starting to act up on me 4 days before I leave. ARGH! I'm icing them and taking it easy for the next few days. All I am going to do is finish packing, which I have been doing in increments. I just needed some place to say all of this, because I really think everyone in my life is sick of hearing it all. I'm starting to feel like a hypochondriac, except I know that what I am feeling is real

Thanks for listening!

 

[tiggspring]

Can I just say, in my neverending medical saga/source of frustration and stress, that I had to go for a CT scan yesterday for a 'stone hunt' looking for kidney/bladder stones? They didn't find any, but did have (yet again) other findings and now the doctor is saying I have IBS as well as every other thing ::groans::. They want me to go for a colostomy. And I woke up to my knee swollen like a balloon and both knees and thighs hurting so bad I could barely walk for about 2 hrs after I got up.

I'm starting to debate the wisdom of taking this trip! I haven't gotten an ECV or wheelchair, figuring we're doing a lot of breaks, but now I'm just not sure how this will work out with my knees starting to act up on me 4 days before I leave. ARGH! I'm icing them and taking it easy for the next few days. All I am going to do is finish packing, which I have been doing in increments. I just needed some place to say all of this, because I really think everyone in my life is sick of hearing it all. I'm starting to feel like a hypochondriac, except I know that what I am feeling is real

Thanks for listening!

Hang in there you can do it!

Sending pixie dust and hugs your way

 

[SeaSpray]

Can I just say, in my neverending medical saga/source of frustration and stress, that I had to go for a CT scan yesterday for a 'stone hunt' looking for kidney/bladder stones? They didn't find any, but did have (yet again) other findings and now the doctor is saying I have IBS as well as every other thing ::groans::. They want me to go for a colostomy.

Do you mean a colonoscopy? I have IBS and the only real way that they can rule out other reasons for the symptoms is to do a colonoscopy. The procedure itself is not bad at all, you'll be heavily sedated. But the day before, the prep is not fun. Having IBS the running to the bathroom wasn't the worst part for me, but drinking the disgusting stuff, was.

And I woke up to my knee swollen like a balloon and both knees and thighs hurting so bad I could barely walk for about 2 hrs after I got up.

I'm starting to debate the wisdom of taking this trip! I haven't gotten an ECV or wheelchair, figuring we're doing a lot of breaks, but now I'm just not sure how this will work out with my knees starting to act up on me 4 days before I leave. ARGH! I'm icing them and taking it easy for the next few days. All I am going to do is finish packing, which I have been doing in increments. I just needed some place to say all of this, because I really think everyone in my life is sick of hearing it all. I'm starting to feel like a hypochondriac, except I know that what I am feeling is real

Thanks for listening!

I know that you're already on this trip and I hope that you're feeling ok! I've had to rent an ECV for the last few years.... It's the only way that I can get around the parks, due to fibromyalgia plus bad plantar fasciitis. I hope that you rent one if you need one.

I know how you feel when you say that you need a place to say all of this because you hate to sound like a hypochondriac all of the time. I feel the same way, so most people have no idea how much pain I'm in all the time. My poor family. LOL I don't know if there's been two days in a row in the last few years where I didn't say, at least once, "ugh, I don't feel good". The funny thing is, in my mind, I try hard to NOT say it, so imagine if I said it as often as I wanted to. LOL

Anyway.... I'm feeling really lousy lately. I'm too young to feel this horrible all of the time. I'm on Lyrica for fibromyalgia. When people ask me if it helps, I tell them that I have no idea because I don't know if I'd feel worse if I didn't take it.

I also have TMJ/jaw pain, constantly. The masseter muscle gets tight from clenching in my sleep. So you know what the recommended solutions are? muscle relaxers, Advil, prescription pain medication. That's all well and good, but the muscle relaxers and prescription pain medication just makes me feel even more "out of it" than I already do. And too much Advil upsets my stomach even more than it already is.

I've gained about 20 pounds in the last 8 months or so. I don't know why. My eating habits haven't changed, and my activity level hasn't changed. Maybe it's because I just turned 50 and my body chemisty has changed. Who knows.

Anyway, I just needed to vent. Thanks to anyone who's reading this.

P.S. My DH and DSs are pretty good about all of this. DH is not the demanding type regarding dinners or anything (all day I kept talking about what I planned to make for dinner; however, I just threw frozen pizza into the oven because of how crummy I feel right now), and DSs are good about doing their share of household chores. I don't have DSs do everything because if I did, then I think that would just depress me. I do work 35 hours a week, at a desk job, fortunately.

I just hate to even talk about how bad I feel all of the time, to them, so I try to keep to maybe a couple of times a day. lol

 

[carrie6466]

Do you mean a colonoscopy? I have IBS and the only real way that they can rule out other reasons for the symptoms is to do a colonoscopy. The procedure itself is not bad at all, you'll be heavily sedated. But the day before, the prep is not fun. Having IBS the running to the bathroom wasn't the worst part for me, but drinking the disgusting stuff, was.


I know that you're already on this trip and I hope that you're feeling ok! I've had to rent an ECV for the last few years.... It's the only way that I can get around the parks, due to fibromyalgia plus bad plantar fasciitis. I hope that you rent one if you need one.

I know how you feel when you say that you need a place to say all of this because you hate to sound like a hypochondriac all of the time. I feel the same way, so most people have no idea how much pain I'm in all the time. My poor family. LOL I don't know if there's been two days in a row in the last few years where I didn't say, at least once, "ugh, I don't feel good". The funny thing is, in my mind, I try hard to NOT say it, so imagine if I said it as often as I wanted to. LOL

Anyway.... I'm feeling really lousy lately. I'm too young to feel this horrible all of the time. I'm on Lyrica for fibromyalgia. When people ask me if it helps, I tell them that I have no idea because I don't know if I'd feel worse if I didn't take it.

I also have TMJ/jaw pain, constantly. The masseter muscle gets tight from clenching in my sleep. So you know what the recommended solutions are? muscle relaxers, Advil, prescription pain medication. That's all well and good, but the muscle relaxers and prescription pain medication just makes me feel even more "out of it" than I already do. And too much Advil upsets my stomach even more than it already is.

I've gained about 20 pounds in the last 8 months or so. I don't know why. My eating habits haven't changed, and my activity level hasn't changed. Maybe it's because I just turned 50 and my body chemisty has changed. Who knows.

Anyway, I just needed to vent. Thanks to anyone who's reading this.

P.S. My DH and DSs are pretty good about all of this. DH is not the demanding type regarding dinners or anything (all day I kept talking about what I planned to make for dinner; however, I just threw frozen pizza into the oven because of how crummy I feel right now), and DSs are good about doing their share of household chores. I don't have DSs do everything because if I did, then I think that would just depress me. I do work 35 hours a week, at a desk job, fortunately.

I just hate to even talk about how bad I feel all of the time, to them, so I try to keep to maybe a couple of times a day. lol

I do mean a colonoscopy. I'm just losing my mind lately, that's all Yeah, I know about the drinks, I've taken my MIL for hers and been there the night she had to drink the stuff. UGH.

Trip was good, but I did end up with an ECV. I just couldn't do it. My knee swelled up to twice the size of the other one, too. I had an appt with a rheumotoligist the day after I returned. He took one look at it and sent me for x-rays and bloodwork. I will get the results on Monday, hopefully. I asked him if he could give me something for the pain. He told me to take Aleve. Yeah, because I wasn't already taking it for a week for the swelling.

I made it through 2 days ok, but the 3rd day I was a mess. I could barely limp my way around and ended up renting on the 4th day. That day I rented an ECV upon entering the park and the day after that (since I was staying at BW) I went down and rented for the rest of the trip from Buena Vista.

Lesson learned. I should have just rented before I left. I knew I was going to end up needing it and was trying not to, trying to pretend everything is still 'normal'. UGH.

Despite all of that, enjoyed myself. Love watching DD have fun

 

[lady_bug_888]

Hi everyone!

New to this thread and happy I've found it! My therapist (CBT works wonders for me) keeps telling me I should chat with others about FMS so I'm happy I found this thread on the DIS! I've had FMS since 1993 (I was 13) but I wasn't 'officially' diagnosed until 1999.

I suffer from a variety of symptoms and I'm constantly learning more about the condition and I think it's so funny how things click and I realize that yes, this is just another part of FMS. Some of the things that plague me are: extreme fatigue (very debilitating and energy draining), insomnia, which doesn't help my fatigue or pain!, pain pretty much everywhere...I can tell when the weather is changing or the air pressure changes, depression/anxiety (CBT helps here!), and noise sensitivity which is quite hard for me to deal with sometimes.

In addition to FMS I also have chronic asthma and severe allergies so sometimes I feel like I'm fighting an uphill battle! For the most part, I try to stay positive about life and my illnesses and try not to let anything get in the way of achieving my goals.

I've been on so many drugs for FMS that I can't remember them all! Amitriptiline (sp?) was one of the drugs and I was on that for several years but I hated the side effects and you are supposed to avoid direct sunlight. I love the sun and it brightens my mood so I haven't been on that medication for quite a few years. I was on Nerontin (sp?) for a few years as well which was great for the pain but I didn't like being on a drug that altered my brain chemistry that much. At one point I was on Nerontin for pain, a drug to stay awake and give me energy during the day, and something to put me to sleep at night. That is when I put a stop to everything and went to eating healthier, getting massages and seeing a therapist. I have also added more exercise, long baths/soaks in a hot tub, and taking advil as needed to my list. Due to EXTREME fatigue and insomnia I have had to add taking a sleeping pill back to my list for the past 2 1/2 years. I just can't sleep without it (though sometimes I can get a brief nap in the afternoon).

Living with this disease SUCKS! I'm 31 years old, yet most days I feel like I'm 100. I'm so tired and sore and stressed out and it's hard on my family when I'm grouchy because I'm so tired of dealing with everything. I DO try to stay positive and identify what is causing me to feel yucky and I tell my DS, DH and DD when I'm feeling especially crumby so that they know if I yell or snap it's not them...it's just something I can't control at the moment.

Currently I'm preparing for our first trip to WDW in 13 days!!! I just got home from 8 days at the cabin and DS is going to spend some time with his grandparents starting tomorrow so I'm trying to pack for him. I'm the packer, cleaner, planner and organizer in our household so while all this is exciting (and I'm so HAPPY to get to go to WDW) it is also overwhelming and stressful. My family doesn't really understand why I'm so grouchy all of a sudden but there is just so much to do before we go!

Anyways, I look forward to hearing from everyone and I hope I can provide some support when needed!

 

[TLSnell1981]

Well I'm down 15lb and gettg lots done. Pain still issue but at least have energy to move
Sending Pain free vibes and pixie dust to all

I'm just losing my mind lately, that's all

Nah..it's just the fibro.