Fibromyalgia Thread

[tiggspring]

We leave for Disney on Dec 18 and will be there for 2 weeks

We usually go for about 10 days and I am in a lot of pain by the last half of the trip and I have gotten significantly worse over the last year. So I thought I would ask for advice.

I am not getting a scooter but have discussed it with my wife. I like to walk and feel that being in a scooter wouldn't allow me to hold hands with my girls while in the crowds. Also I am afraid that with my medicine and the crowds that I would constantly be on edge trying not to hit anyone and that stress would be just as detrimental as walking.

I am planning to bring less items into the park with me, just my camera bag and my pockets. No more back pack!

We plan to hit meal times as soon as restaurants open to avoid crowds and spend extra table time without monopolizing the table for other families.

I am considering getting a cane, but don't know how much that will help. My hips have been really bothering me, one of them much worse than the other. I thought this might help take weight off of the bad one. Does anyone have any experience with this?

We are driving so I don't have to worry about buses and not getting a seat.

What are some of the things that you do to help make your day more magical and not interfere with your families magic by making them slow and concerned about you etc.

Thanks!

One more thing that I wish I had last may. If you have an I phone they have lots of aps that will tell you wait times and FP times for all the rides. Verizon just came out with one for my Crackberry (it was supposed to be out last march) The link for verizon is hard to find so here it is. I would imagine this would save alot of energy in regards to lines!

http://mediastore.verizonwireless.co...Type=APPLICATN

 

[chell]

One more thing that I wish I had last may. If you have an I phone they have lots of aps that will tell you wait times and FP times for all the rides. Verizon just came out with one for my Crackberry (it was supposed to be out last march) The link for verizon is hard to find so here it is. I would imagine this would save alot of energy in regards to lines!

http://mediastore.verizonwireless.co...Type=APPLICATN

I hope one comes out for Sprint's Blackberries soon. Before Dec. 31 would be real nice.

Speaking of the Blackberries - yesterday I saw there is going to be a purple one. Dang it! I've got until August or September before I can upgrade again.

 

[tiggspring]

I hope one comes out for Sprint's Blackberries soon. Before Dec. 31 would be real nice.

Speaking of the Blackberries - yesterday I saw there is going to be a purple one. Dang it! I've got until August or September before I can upgrade again.

I"ll keep my ears open for Sprint info. I cant upgrade until Nov 2010. But by then hoping to get the new Droid OMG they look so cool! It will take a year to work the bugs out so i can wait. Let other people deal with the bugs

How you been feeling? I've been feeling awful sooo tired and feet always frozen. DH suggesting we need to get a maid not sure how we can do that. He is so good about this. Just wants me to be able to enjoy life without being tired. I picked a good one . I still cant catch up even with kids in school all day. The little bit of driving I do in the AM and 3 days a week for activities wipes me out. Only one thing is more than 5 mile from my house. No traffic and peacful drive. In my mind I thought I might be able to work part time with the kids in school boy was that wishful thinking

On a lighter note I was doing more research on the XMRV because I was a little freaked out when I read in a NV article that it was linked to an increase in Lymphoma which DH1 died from. upon further research it seems that data is not been replicated so not much to worry about there. Maybe it was due to the meds some of the subjects were on that seem to increase the risk. Just thankful it looks like antidotal and no real risk

Sending pain free vibes and Pixie dust to all!

 

[cosine4]

One more thing that I wish I had last may. If you have an I phone they have lots of aps that will tell you wait times and FP times for all the rides. Verizon just came out with one for my Crackberry (it was supposed to be out last march) The link for verizon is hard to find so here it is. I would imagine this would save alot of energy in regards to lines!

http://mediastore.verizonwireless.co...Type=APPLICATN

We do have iphones and we already downloaded a couple different apps for wait times I am excited to finally use them. We are going to be there for Christmas week (and the week prior) so we may not get to ride too many rides (we don't like to wait in long lines). Last year we just did what we could fast pass or wasn't a long wait and just enjoyed the atmosphere when we weren't riding. That is one of the best things about having an annual pass, not feeling like you have to do everything.

 

[tiggspring]

We do have iphones and we already downloaded a couple different apps for wait times I am excited to finally use them. We are going to be there for Christmas week (and the week prior) so we may not get to ride too many rides (we don't like to wait in long lines). Last year we just did what we could fast pass or wasn't a long wait and just enjoyed the atmosphere when we weren't riding. That is one of the best things about having an annual pass, not feeling like you have to do everything.

Wish I lived close enough for an AP. We are lucky to live near Idlewild park. It"s a 100 yr old parked rated 2nd best childrens park in the country (behind leggo land). We have AP and will go to the water park or other section for a few hours then head home. It is great with the fibro not to feel pressure to stay. We try to become members of the Pittsburgh museums, zoo etc for that same reason. That way I can enjoy our visit and not push because we can always come back for free With five of us it only takes 2 visits for most to pay for themselves. Have a great pain free trip

 

[cosine4]

Wish I lived close enough for an AP. We are lucky to live near Idlewild park. It"s a 100 yr old parked rated 2nd best childrens park in the country (behind leggo land). We have AP and will go to the water park or other section for a few hours then head home. It is great with the fibro not to feel pressure to stay. We try to become members of the Pittsburgh museums, zoo etc for that same reason. That way I can enjoy our visit and not push because we can always come back for free With five of us it only takes 2 visits for most to pay for themselves. Have a great pain free trip

We don't live close enough either We live near Peoria, IL but go enough that it was cheaper than buying hopper passes. Plus once you have it you can sneak in trips for pretty cheap

 

[chell]

I"ll keep my ears open for Sprint info. I cant upgrade until Nov 2010. But by then hoping to get the new Droid OMG they look so cool! It will take a year to work the bugs out so i can wait. Let other people deal with the bugs

How you been feeling? I've been feeling awful sooo tired and feet always frozen. DH suggesting we need to get a maid not sure how we can do that. He is so good about this. Just wants me to be able to enjoy life without being tired. I picked a good one . I still cant catch up even with kids in school all day. The little bit of driving I do in the AM and 3 days a week for activities wipes me out. Only one thing is more than 5 mile from my house. No traffic and peacful drive. In my mind I thought I might be able to work part time with the kids in school boy was that wishful thinking

On a lighter note I was doing more research on the XMRV because I was a little freaked out when I read in a NV article that it was linked to an increase in Lymphoma which DH1 died from. upon further research it seems that data is not been replicated so not much to worry about there. Maybe it was due to the meds some of the subjects were on that seem to increase the risk. Just thankful it looks like antidotal and no real risk

Sending pain free vibes and Pixie dust to all!

Thanks! Sprint lets us upgrade every year. I wonder why.

I'm feeling better now that I'm gluten-free. It is cold and rainy here today. Perfect sleeping weather! Those 4 days off for a long Thanksgiving weekend made me real lazy. Today I'm hurting but not near as bad as I would have been if I had not gone gluten-free. I can't believe the difference this has made in my body.

It is nice to dream of a maid. My husband is my maid. Bless his heart! He tries to do a good job. He just doesn't think to dust. He does everything else. The floors may be pretty dirty by the time he gets to sweeping but at least he does it. I'm so blessed to have such a wonderful husband. He really does look out for me and takes such great care of me.

I hope you all have a great day and a pain free day!!!

 

[EDuke98080]

Hi All!

I havn't been on much as I have had a crash and havn't felt well. Hope everyone else is doing well. I really need to stop doing the whole Thanksgiving for the entire family thing. It's gonna take a while to recover.... Chell, glad the gluten free is helping you. It has been a year for me and I am still amazed at how much better I generally feel from the way I used to feel.

Has anyone head about the Droid phone? My son wants one but I know nothing about them. Is anyone going to WDW soon? We are leaving a couple days after Christmas. We were thinking about doing Annual Passes also with the DVC discount looks like it breaks even after 6 days in the parks and we go 2x per year so that may work. We also d owhat we can but usually go after noon time and leave to rest and then go back. My hips end up hurting from the walking so we go to parks every other day so I can rest in between.

I have a cleaning lady every other week to do the stuff I can't like mopping foors and vacuuming and the bathrooms. I just can't scrub on my hands and knees anymore and hubby got tired of working full time and picking up all the slack at home too. Makes me sad but I do the best I can.

Hope you all enjoy the season ~ don't over do ~ and stay pain free!

~Erika

 

[chell]

Thanks Erika! When I have a really bad day again I'm going to be crushed thinking I've done something wrong. Sorry you have been feeling bad. Glad you feel better now than you used to.

What are your dates for WDW? We will be there Dec. 31 - Jan. 9. If we are there at the same time any would you like to meet up?

 

[EDuke98080]

Chell,

We'll be there from the 28th umtil the 5th! Would love to meet up, what are your plans? We'll be at SSR. Let me know what you're thinking.

 

[tiggspring]

Everyone set your dvr's tomorrow dr oz show is explaining how a retro virus casues fatigue.sound like a discussion of xmrv.

Too tired to write anything else tonight. Pain free vibes!!!

 

[chell]

Chell,

We'll be there from the 28th umtil the 5th! Would love to meet up, what are your plans? We'll be at SSR. Let me know what you're thinking.

We are at the Swan. I'll try to remember to PM you where we are through the 5th. But we are flexible. If I don't PM you just remind me. I'm a little forgetful sometimes.

 

[chell]

Everyone set your dvr's tomorrow dr oz show is explaining how a retro virus casues fatigue.sound like a discussion of xmrv.

Too tired to write anything else tonight. Pain free vibes!!!

What channel does he come on? I've never watched him before but I keep hearing a lot about him. Sounds like I should record this one.

 

[tiggspring]

What channel does he come on? I've never watched him before but I keep hearing a lot about him. Sounds like I should record this one.

He did have the first part of his show on XMRV. If you check your local listing tonight after midnight til 3 am you might find it. Here it is sindicated on ABC like Oprah. He has some info on his website too. They mentioned you can now get the blood test. you have to order it then the Dr writes the script then you can send it out. Cost $400. Probabaly not covered by insurance.

I have to admit watching it made me cry. I dont ususally let myself get emotional about CFDS/fms but to have real proof that at least some of us have something they can measure was such a RELIEF! THen after the crying spell I wanted to use some not so friendly hand gestures to those DR's who rolled their eyes at me and the nuerologist who emphaticaly told me I was depressed but then couldnt give me the clinical criteria for Depression (so I told him HAHAH!). All this after having both a Psych evaluation and weeks of Cognitive testing (I insisted on this testing) to prevent being labled crazy. I would love to go back to these bozo's and say SEE I"M SICK!

DH GOing to email the XMRV Dr's in Cleveland tomorrow. Since he has university e-mail we think it has a better chance of getting in the DR's hands. He finally finished his PHD papers . One semester down 5 to go! Now he just has to grade all his students work and catch up at his regular job. Now he has a reason to be tired!

 

[tiggspring]

Hi All!

I havn't been on much as I have had a crash and havn't felt well. Hope everyone else is doing well. I really need to stop doing the whole Thanksgiving for the entire family thing. It's gonna take a while to recover.... Chell, glad the gluten free is helping you. It has been a year for me and I am still amazed at how much better I generally feel from the way I used to feel.

Has anyone head about the Droid phone? My son wants one but I know nothing about them. Is anyone going to WDW soon? We are leaving a couple days after Christmas. We were thinking about doing Annual Passes also with the DVC discount looks like it breaks even after 6 days in the parks and we go 2x per year so that may work. We also d owhat we can but usually go after noon time and leave to rest and then go back. My hips end up hurting from the walking so we go to parks every other day so I can rest in between.

I have a cleaning lady every other week to do the stuff I can't like mopping foors and vacuuming and the bathrooms. I just can't scrub on my hands and knees anymore and hubby got tired of working full time and picking up all the slack at home too. Makes me sad but I do the best I can.

Hope you all enjoy the season ~ don't over do ~ and stay pain free!

~Erika

Thats what I need a cleaning lady every other week or so. DD10 does fold alot of the laundry as her chore and DS8 unloads the dishwasher. But we have 10 loads of laundry a week with sports etc and several nights a week we are at activities for 1-2hrs so I dont have them help then. They need downtime and homwork time besides I want them to have chores to learn responsiblity not to be my servants. Although servants are looking pretty good right now

Regarding the Droid I have a friend who is assistant manager of a verizon store. If you have specific questions I can find out for you. They look so COOL!

 

[tiggspring]

Just a little check in

Brighteyes tomorrows your last day Now you can sleep!

Momeli: how are you?

Mommy2all girls: how was the trip? Did the shoes help?

Ireland Nicole: haven't heard from you since the new job. Hope all is well.

Toocheri: have you recovered form your not so magical trip yet?

Sending Pain free vibes and Pixie dust to all

 

[brighteyes]

Just a little check in

Brighteyes tomorrows your last day Now you can sleep!

Momeli: how are you?

Mommy2all girls: how was the trip? Did the shoes help?

Ireland Nicole: haven't heard from you since the new job. Hope all is well.

Toocheri: have you recovered form your not so magical trip yet?

Sending Pain free vibes and Pixie dust to all

OMG I made it, I still have a few classes next week and two more exams but this was the biggie today. GOt the rest of my stuff back - 90's on that stuff I worked so hard on - my 15 pagers.

Then as I am leaving class today I come to my car and have a 300.00 ticket My temporary disability parking pass or whatever you call it, was only valid till nov 09 - my permanent one should have come weeks ago. Needless to say that I have not had time to go to their office to have it renewed again. I was going today after my exam cause I was done early enough. There goes Christmas money

I hope everyone is having a better day than I did.

Stephanie

 

[tiggspring]

OMG I made it, I still have a few classes next week and two more exams but this was the biggie today. GOt the rest of my stuff back - 90's on that stuff I worked so hard on - my 15 pagers.

Then as I am leaving class today I come to my car and have a 300.00 ticket My temporary disability parking pass or whatever you call it, was only valid till nov 09 - my permanent one should have come weeks ago. Needless to say that I have not had time to go to their office to have it renewed again. I was going today after my exam cause I was done early enough. There goes Christmas money

I hope everyone is having a better day than I did.

Stephanie

That's a lot of money. I would call and see what the contest process is. Its not your fault the plate is late. The school should waive the fee if you can show you used it in good faith.

 

[brighteyes]

Everyone has been so quiet lately. Where did everyone go?

 

[Momelie]

Aaaagggghhhh!!!!!

Starting finals week!

My PET scan came back great!!! YAY and happy dancing as best I can all over the place - till I figured out that now that the big bad meanie has been ruled out, we still have no idea what's causing the fevers, lymph node enlargement and high WBC. Hmmmm....

Other than that, I've been trying to force Shakespeare down unwilling brains, grading art projects, dealing with college students who are truly confused as to which one of us is the professor and is thus giving out the grade ( "yes, Sally, you really do have to follow my instructions and do a self portrait, no matter how much you want to paint a landscape" a/k/a Sally has a landscape hanging on her wall and would rather attend open keg night at the Sigma Chi house than work on her art project, thus turning in the landscape as her own work). December 15th and it will all be over!

Oh, and I have to pass an Italian exam sometime in the next week...

Can you say stress to bring on flare?

Oh, and its raining a monsoon here - I think I just saw an ark float down the street! My arthritis is killing me!

Is it January yet?