Fibromyalgia Thread

[tiggspring]

Roll call

How is everyone doing? I have a friend comming in from Rhode Island so I might not be around for a week. All of our USA friends ready for the 4th?

 

[SeaSpray]

Roll call

How is everyone doing? I have a friend comming in from Rhode Island so I might not be around for a week. All of our USA friends ready for the 4th?

I'm wide awake and was just thinking of everyone here and was going to come to post, and then I saw your email.

I'm doing ok. Lots of pain and fatigue, but that's nothing new.

DH has a vacation week next week, so I'm looking forward to that. We don't have any plans since we just got back from the cruise, and we have an out of state wedding at the end of July, so it'll be nice to just relax and see what we feel like doing as each day comes.

I hope you have a good time with your friend coming to visit.


Hugs to everyone.

 

[ksuskin]

I am new to this forum, but not new to fibromyalgia. I was diagnosed with it 16 years ago. It has been an up and down struggle. I now have 2 kids,a husband, a full- time job. I am wiped out! But, I am beyond excited (and a little obsessed) about going to WDW in September for 6 days. We are staying there and have plans to go back to the hotel every afternoon. However, I know that I have a low stamina for walking and standing in lines. Part of me knows that the realistic and most logical decision is to rent an ECV, but I am really struggling with it. I have never done this before, and it feels like I am labeling myself and bringing focus/attention to myself from others. I don't want to be the person everyone waits for on the bus because I have to get the ECV on. I know I need to take care of myself and not worry about what they are thinking. It's not even what they are thinking, it's more what I am thinking. It also feels like "giving in" to the disability. I also feel like it will limit what we can do and make navigating things in the parks such a pain. I just don't know what to do. What do others think? Do you feel like it's been a hassle to deal with ECV's at the parks? Thanks for the feedback!

 

[Earstou]

. It's not even what they are thinking, it's more what I am thinking. It also feels like "giving in" to the disability.

My most memorable moment during my last trip to DL is sitting on a park bench, alone, in pain and crying. I was so tired, and struggling to walk. I had told my family to go back to the hotel without me (and that I would catch up) so the kids would have time to swim.
I realized then that I was holding them back. I didn't want the vacation to be about always waiting for mom (me).
So, on my next trip to WDW, I rented a scooter and let my family enjoy their vacation to the fullest.
So, "giving in" meant my family was able to do more, I was able to do more, I was in a lot less pain and we all had lots of fun.
Giving in isn't always a bad idea!

 

[tiggspring]

I didnt want to give in either. For me being on vacation is about forgetting my trouble and walking out to see a scooter would just make me sad. Plus i would constantly be worried about running over people. I used ridemax to manage my days and it was FANTASTIC! I usually had a +/- 5min walk, 5min wait, then ride whole week long. The pacing is perfect to avoid standing too long, sitting to long to be stiff etc we always planned time back in the room or a long ac break ie show like Mickey Philharmagic, lunch the laugh factory this gave us two hr or so in the heat of the day to cool off and even nod off in show . I also used train to get to back of mk or back. It takes the same time as walking slow with no stress. I have done wdw twice with three kids and didnt need a scooter however I seriously crashed when home. It really is a personal thing. Are you willing to super plan your trip, keep really big cooling/off to room breaks etc to manage your fatigue OR do you want to keep a breakneck pace and find the scooter a nice break from your pain reality? Finally if it means going or staying home is it worth sacrificing the trip? Close your eyes think about the trip with / without the scooter....how do you FEEL? You can always choose to rent a scooter last minute but it is cheeper from offsite. Nothing is in stone once you get there.

 

[TLSnell1981]

I . We are staying there and have plans to go back to the hotel every afternoon. However, I know that I have a low stamina for walking and standing in lines. Part of me knows that the realistic and most logical decision is to rent an ECV, but I am really struggling with it. I have never done this before, and it feels like I am labeling myself and bringing focus/attention to myself from others. I don't want to be the person everyone waits for on the bus because I have to get the ECV on. I know I need to take care of myself and not worry about what they are thinking. It's not even what they are thinking, it's more what I am thinking. It also feels like "giving in" to the disability. I also feel like it will limit what we can do and make navigating things in the parks such a pain. I just don't know what to do. What do others think? Do you feel like it's been a hassle to deal with ECV's at the parks? Thanks for the feedback!

Honestly, I'm much easier to live with on a scooter. I'm not as tired, have less pain and not such a drag on my family. It also helps me avoid a crash.

Did I mention, I'm not as grouchy?

 

[SeaSpray]

Hi everyone

Well first of all, my sleep cycle is totally screwed up now. I'm awake until around 4am almost every night. Then I sleep too much during the day. I thought I had a virus, and I very well may have one, but now I'm beginning to think that this is just another fibromyalgia crash, following a vacation. I'm not in extreme pain, but it's the fatigue and drop-dead sleepiness that's going on with me now. Oh well. Like my mother used to say, This too shall pass! My mother was an optimist so I guess that's where I get that from. lol

Anyway...

Mommasita, how are you??? I don't know what you're going through right now but I wanted you to know that I'm still thinking of you. Please let us know how you're doing.

ksuskin: Several years ago I had to start using a scooter for our WDW trips. It became a neccesity, actually, because one time my foot seized up in the middle of Epcot and DH had to go to the entrance to rent a wheel chair for me. I used a regular wheel chair for the rest of that trip, and the next trip, renting them at the parks. But I didn't like being dependent upon someone else wheeling me around, so I tried renting a scooter at the park one day, and ever since then I rent one off-site and they have it waiting for me at the resort for when I check in, and then I leave it at the front desk when I check out. It's not cheap, but it's not cost-prohibitive, either. And for me, it is VERY, VERY worth it.

We stay at the Polynesian so we have monorail access to the MK and Epcot, so the only time that we have to wait for a bus to load the scooter is when we go to Studios or AK.

I know that it's not a comfortable thought at first.... and I still don't like the idea of it, but it makes the difference between me (and my family) being able to do what we want while at WDW, or me just barely being able to walk down Main Street USA and then having to go back. For me, at this point, there is no doubt that that's what I have to do.

I hope that you come to the right decision for you. Yes it might be a pain being loaded onto the bus, and you might feel people looking at you, but please just ignore them (I just smile at people), and do what's right for you.

donalduck: How is the Savella working for you???



Hugs and pixie dust to everyone

 

[ksuskin]

Thank you so much to those who have responded. I think I have been getting more used to the idea, and it helps to know what others have experienced. We've recently done some family outings locally and it has confirmed to me that I won't be able to handle Disney without some assistance. I also didn't mention (did I mentally block it?!) that I broke my foot April 1, have to have some nerves severed in my spine due to pain, and am having a knee problem from the fall when I broke my foot. So....I guess I do need something! I still don't like it though!

 

[tiggspring]

With those added challenges I think you are right to go with a scooter. Hard enough with Fibro add the rest and well walking would be a nightmare in the heat.

Still waiting to have energy to report on trip...ttyl

Pain free vibes to all!

 

[carrie6466]

Thank you so much to those who have responded. I think I have been getting more used to the idea, and it helps to know what others have experienced. We've recently done some family outings locally and it has confirmed to me that I won't be able to handle Disney without some assistance. I also didn't mention (did I mentally block it?!) that I broke my foot April 1, have to have some nerves severed in my spine due to pain, and am having a knee problem from the fall when I broke my foot. So....I guess I do need something! I still don't like it though!

I would go with the scooter. I tried so hard not to, on our last trip. The first 3days I was toast. I couldn't even walk back to the bus at mk, so I sat down and cried. Next day, I rented a scooter for rhe rest of the week ftom a place on the boardwalk.

I get all freaked out about the bus, so we walked or boated to ep and dhs, skipped ak, and bussed or taxied it to mk or contemp and walk to mk.

It didn't just make it easier for me, but for the family as well.


Did someone ask about Savella? I've been on it for quite a while now, if someone had a question.

 

[tiggspring]

Quick check in. How is everybody doing?

I had 20+ days of migraines then a few good days when my firend was here now back on the migraine train . I had a really good day tuesday and took kids bowling then CRASH wicked migraine next day and yesterday was and again today wake up with migraine. Yesterday I stuck it out thinking I might be suffering from rebound efect of excedren so hopefully the meds and caffine I took today will kick in. I'm doing better, hence this note but not out of woods yet.

maybe I'll post my trip report here sometime before chistmas

Sending pain free vibes and pixie dust to all

 

[tiggspring]

Since we can all use a laugh this is FUNNY!!

Since these photos are all about Disney Charactors and include real life charactors on both side of the isle it should pass the strict rules around here

http://www.huffingtonpost.com/2012/...ml?1342186554&ncid=webmail16#slide=more238141

 

[SeaSpray]

Quick check in. How is everybody doing?

I had 20+ days of migraines then a few good days when my firend was here now back on the migraine train . I had a really good day tuesday and took kids bowling then CRASH wicked migraine next day and yesterday was and again today wake up with migraine. Yesterday I stuck it out thinking I might be suffering from rebound efect of excedren so hopefully the meds and caffine I took today will kick in. I'm doing better, hence this note but not out of woods yet.

maybe I'll post my trip report here sometime before chistmas

Sending pain free vibes and pixie dust to all

Checking in.... not feeling too well at all lately. Lots of all-over pain, constant headaches, fatigue all day. Blah.

Other than all that, I'm awesome.

I have to go to Boston tomorrow to give a deposition for a case involving my former employer. Big legal case. I worked in the accounting department and was the sole person who handled this specific investor (along with the CEO of the company), so they want my testimony as to how the account was handled, who knew what, who knew what and when, etc. If they ever make a movie out of this mess I'll be sure to let you all know. Ponzi scheme. The idiots. Now I (and about 30 other people) am out of a job that I really loved. That's greed and arrogance for you.

At least the lawyer is paying for a towncar service to drive me to and from Boston.

tigg: sorry about those migraines. I hope they ease up soon for you.

HUGS to everyone.

 

[tiggspring]

Checking in.... not feeling too well at all lately. Lots of all-over pain, constant headaches, fatigue all day. Blah.

Other than all that, I'm awesome.

I have to go to Boston tomorrow to give a deposition for a case involving my former employer. Big legal case. I worked in the accounting department and was the sole person who handled this specific investor (along with the CEO of the company), so they want my testimony as to how the account was handled, who knew what, who knew what and when, etc. If they ever make a movie out of this mess I'll be sure to let you all know. Ponzi scheme. The idiots. Now I (and about 30 other people) am out of a job that I really loved. That's greed and arrogance for you.

At least the lawyer is paying for a towncar service to drive me to and from Boston.

tigg: sorry about those migraines. I hope they ease up soon for you.

HUGS to everyone.

Hope all went well with your depo. My DH loves them (yes he is insane ). But then again he gets paid when he is asked to testify so alot less personal stress. My migraines have been CRAZY!! I have had ony a couple migraine free days since our return June 7 I lost count after 45days of migraine symptoms. The past ftwo days I have been able to get enough timw with just migraine fog to get two really big projects done with my kids help. For the first time in a year my family room is clean in every nook and corner even under the sectional!! I also got my huge dish display shelves dusted for the first time in more than a year ( I know YUCK! ) My 1800's dinning/entrance area looks brand new

Basiclly I havent been around because the uptime I have I'm rushing to get things done or give my kids a good day out. I have managed to give the kids a reasonable summer keeping my bedrest time to when they really are sick of me be ing around anyway When I can keep my symptoms from impacting them too much then I'm miserable but happy if you know what I mean.

Hope everone is finding a way to enjoy the summer!

Sending pain free vibes and pixie dust to all

 

[SeaSpray]

Hope all went well with your depo. My DH loves them (yes he is insane ). But then again he gets paid when he is asked to testify so alot less personal stress. My migraines have been CRAZY!! I have had ony a couple migraine free days since our return June 7 I lost count after 45days of migraine symptoms. The past ftwo days I have been able to get enough timw with just migraine fog to get two really big projects done with my kids help. For the first time in a year my family room is clean in every nook and corner even under the sectional!! I also got my huge dish display shelves dusted for the first time in more than a year ( I know YUCK! ) My 1800's dinning/entrance area looks brand new

Basiclly I havent been around because the uptime I have I'm rushing to get things done or give my kids a good day out. I have managed to give the kids a reasonable summer keeping my bedrest time to when they really are sick of me be ing around anyway When I can keep my symptoms from impacting them too much then I'm miserable but happy if you know what I mean.

Hope everone is finding a way to enjoy the summer!

Sending pain free vibes and pixie dust to all

The deposition went fine; I'm sure that I'll be called in to testify in court next.

Tigg, I'm sorry that you've been having all those migraines. You sound like a great mom, giving all of your "good" time and energy to your kids. And it sounds like you got a real lot done around your house, too

We were just away this past weekend for my nephew's wedding. It was a 5 hour drive each way, and we stayed for 2 nights. We had an excellent time, but now I'm feeling lousy. I was feeling lousy anyway though.

I've been sleeping a LOT, and I hate that. Oh well.

In a couple of weeks I'll be going to NJ for 2 weeks to visit my sister and her family. It'll be fun, and they're aware of my issues, but I know that I'll be worse when I get back home.

 

[tiggspring]

The deposition went fine; I'm sure that I'll be called in to testify in court next.

Tigg, I'm sorry that you've been having all those migraines. You sound like a great mom, giving all of your "good" time and energy to your kids. And it sounds like you got a real lot done around your house, too

We were just away this past weekend for my nephew's wedding. It was a 5 hour drive each way, and we stayed for 2 nights. We had an excellent time, but now I'm feeling lousy. I was feeling lousy anyway though.

I've been sleeping a LOT, and I hate that. Oh well.

In a couple of weeks I'll be going to NJ for 2 weeks to visit my sister and her family. It'll be fun, and they're aware of my issues, but I know that I'll be worse when I get back home.

Well I've had a couple days in a row now where I almost get a migraine then I "catch it" just before I'm in for it. Not perfect but sooo much better than the last two months. Meanwhile I'm having mild bouts of insomnia. Most likely from staying up past my bedtime for the Olypics Made final dance payment for DD taping of the holiday parade Now just have pay off hotel, save for meals yadda yadda yadda.

Cant believe that we are going back like this! Four years ago it had been 5 yrs since we had taken a vaca and they had all been small cheap affairs. Then my cousin who was just a few months yonger than me died. I said to DH we have to make family vacations a priority even if that means being a bit naughty with the bills The next year were were at WDW @ 40pct off then again in 2010 then a GREAT seaside trip to Ocean City MD so we could save for the DREAM now back to Disney with our little one to Dance in the taping of the Holiday Parade. I havent quite figued out how we paid for them all and our bills are just as annoying as ever but no worse so I wonder were all that vaca money went those years we didn't go.

anyhoo amazing how much easier it is to be greatful when you dont feel like a big old branch is sticking out of your eye

Sending pain free vibes and Pixie dust to all

 

[tiggspring]

Roll call!

I feeling better how are you guys fairing?

 

[SeaSpray]

Well I've had a couple days in a row now where I almost get a migraine then I "catch it" just before I'm in for it. Not perfect but sooo much better than the last two months. Meanwhile I'm having mild bouts of insomnia. Most likely from staying up past my bedtime for the Olypics Made final dance payment for DD taping of the holiday parade Now just have pay off hotel, save for meals yadda yadda yadda.

Cant believe that we are going back like this! Four years ago it had been 5 yrs since we had taken a vaca and they had all been small cheap affairs. Then my cousin who was just a few months yonger than me died. I said to DH we have to make family vacations a priority even if that means being a bit naughty with the bills The next year were were at WDW @ 40pct off then again in 2010 then a GREAT seaside trip to Ocean City MD so we could save for the DREAM now back to Disney with our little one to Dance in the taping of the Holiday Parade. I havent quite figued out how we paid for them all and our bills are just as annoying as ever but no worse so I wonder were all that vaca money went those years we didn't go.

anyhoo amazing how much easier it is to be greatful when you dont feel like a big old branch is sticking out of your eye

Sending pain free vibes and Pixie dust to all

Congrats on planning your next trip!! That's always so much fun, and a great mood lifter.

Roll call!

I feeling better how are you guys fairing?

I haven't been feeling well at all for quite a while now (or so it seems!). Daily headaches, daily shoulder, neck, and jaw pain. Plus throw the occasional dental pain in there too. I feel like I've been to the dentist so much in the last few months.

I've been dealing with a few semi-stressful things lately, too.

Three weeks ago my DS24 was driving my van and was hit hard. Fortunately he is basically fine, but the van was totaled. Just this past weekend DH and I went out and we found a used car to buy.

Some other minor things too. And I was supposed to go to New Jersey this past Saturday but I ended up post-poning the trip because I just have too much to take care of at home right now. Paperwork from the insurance company, paperwork for DS's medical issues (not car accident related), and I'm still on unemployment and a new policy means having to go back to the career center for help with job seeking.

I know that stress aggravates fibromyalgia, and boy I'm quite aggravated right now. LOL

Had a good day yesterday with DH and DSs, though. We took the new car out for a ride and went out to lunch. It was fun having both DSs home at the same time, and going out for a while all together, like when they were younger. That was really nice.

Anyway, I think I'm rambling now.

I hope everyone is doing ok. Hugs and pixie dust to everyone.

 

[scojos]

how would u feel about a new fibromite joining in?? im a 39 yr old mother of 3 who was diagnosed about 2 months ago following a car crash last year. we are currently planning a return to okw next yr, as i dont know if after that i ll be physically or mentally able to cope.

i struggle with all the classic symptoms and am worried about fatigue (who doesnt) or, the other way, insomnia on my trip, dh has conviinced me to hire a ecv for the time we are there, and anything else will get dealt with! i struggle massively with sweating (and its cold here in the UK can u imagine aug in wdw????) as well as constant thirst and no appetite (we are going to be on the ddp so i may eat alot of kids meals or share lol)...

so, does anyone have any tips, not just on wdw, but also general life as im learning new stuff everyday!!
tracy

 

[tiggspring]

how would u feel about a new fibromite joining in?? im a 39 yr old mother of 3 who was diagnosed about 2 months ago following a car crash last year. we are currently planning a return to okw next yr, as i dont know if after that i ll be physically or mentally able to cope.

i struggle with all the classic symptoms and am worried about fatigue (who doesnt) or, the other way, insomnia on my trip, dh has conviinced me to hire a ecv for the time we are there, and anything else will get dealt with! i struggle massively with sweating (and its cold here in the UK can u imagine aug in wdw????) as well as constant thirst and no appetite (we are going to be on the ddp so i may eat alot of kids meals or share lol)...

so, does anyone have any tips, not just on wdw, but also general life as im learning new stuff everyday!!
tracy

Tracy Welcome!

Here is an old post as to what I have found helpful. Sone of it will not apply as you are going in Aug. Ridmax was great at letting me see how changes in the schedule would impact my day. Check out the Ridmax thread for changes since FP changed. I would also add that we kept our neck coolers in ice water while in hotel and in a ziplock baggy for transport then would add ice from drinks etc to keep it cooler. You can find them at camping sections of chain stores or online. They are made of a gel that gets cold when wet. Since you are going in Aug you might want to travel with two. Planning for the middle of the day was critical for me. If we didnt go back to the room we planned a show/movie then sitdown lunch then another indoor show/movie etc. This gave me about 3+hrs sitting in a cold area and I admit a place to nap (I could not stay awake in the america adventrue)

Dana

As far as Disney I was determined to not use a scooter last year. I wanted my vacation to be a vacation from everthing including the Fibro ( I know wishful thinking). Looking at a scooter after ever ride would have ruined the magic so I planned to the extreme and it worked for a week and then I crashed for several and it took months to get back on my feet. I know he two week crash was due to the trip. Not sure what casues the next 9 months.

The top two things that helped were staying in May because I'm intollerant of heat/cold and staying in Tahiti at the poly so I could get back to the room quickly to allievate a migraine or crash. Extra driving and/or busses is just too much for me over 7 days. I see you going in May so that a big plus

These things helped me. 1. I packed a month in advance and stayed in bed as much as possible the week before we went. So I was not stressing about bags the week before we went or over exerting myself. Since we went in May I bought all of our summer clothes shoes and just packed them right away. 2. Each kid even my 4 yr old had a fanny pack with a fan mister (hanging outside), drink, snack ,hand wash, autograph book and pen, penny press book, neck cooler and map. This kept everyone independant and stopped mom from searching for everything every time someone needed something small 3. USE RIDEMAX!!! I cant say enough about this program. We waited on average 5 min. It was right on the money and the kids didnt fight all week! each kid gave me their must see rides for the day and they new the list would avoid lines so they didnt fight over who got to pick the next ride and Mom and Dad didnt "play favorites" because it was the list that told us where to go. It basicly keep us moving for 5min standing for 5min then the ride or show. This pattern really kept me from getting too tired and too stiff Priceless on so many levels.4. To avoid exhastion I planed to do one side of the park per day. On the day we went to Adventure land we took the train at opening and since I'm slow we arrived in the same amount of time as it would have taken to walk .5. ( you might not want to do this) I pulled myself off my pain meds the month before I went because they stop working after awhile. by doing this they worked much better on my trip. I also got some stronger meds from my DR in case of an emergency 6. we kept a link to all ears menues and the Dis snack thread on our black berry. while we were in line the kids would decide what they wanted to eat then there was no meltdowns while dinning and we got our meals much faster. You could also print them out. 7. we were a bit fanatical about purell on/off rides and clorox wipes on remotes/doornobs in the room. I knew several people who went last May all got sick but us so it must have worked8.We laid out all the clothes the night before so Mom did'nt have to go looking in the AM. I could take a shower every morning as well as every night to avoid stiffness. Our biggest problem last year was packing back up so this year we are ging to AK our last full day so we have a bit more time in the hotel room. I am also planning to put each days dirty clothes in a large ziplock then having DH put them in an empty suitcase in our van every am before we go out. The Handicap parking is really close to Tahiti so we pass it any time we go on the ttc and we will be mostly packed by Fri!

Really it came down to obsessive planning based on my Fibro and my kids habits.

hope this helps!