Fibromyalgia Thread

[mommasita]

I haven't checked in in so long, that I feel badly..

How is everyone? Roll call maybe? or a check in if anyone wants to? hugs

Here well.. We had an ok trip.. Weather was decent.. Father in law is early Alzheimer's, so we basically didn't have a minute without following him, and he left the cabin (connecting) at all hours of the night .. But it was ok..

Back home now, and my insurance is offering me a lump sum to buy me out.. I am countering, and awaiting what they say.. My lawyer is nervous, as we all know our illnesses are invisible, and in a court of law don't stand up very well, so if the counter is decent I am going to accept and invest the $$ and after xmas look for a part time job.. I worry if I don't, and the horror stories of then getting cut off.. I have 20 years left of payments, and right now with DH getting laid off just before our trip, well times are very different for us..

Pain was good during the summer, as best as I get during the year.. The cold is coming, and my pain isn't good.. Love DH, but HATE Him home.. >It just doesn't work out so well..... He is used to working hard, and is frustrated, and my heart goes out to him, and I am used to doing my thing.. We are still renovating, so he is busy, but not the busy he is used to..

gentle hugs all around

 

[SeaSpray]

Hi everyone:

Wanted to check in. It's been a strange year so far. We spent 6 weeks living in a hotel while our main bathroom and family room were torn apart and then remodeled from water damage from a burst pipe. You'd think living in a hotel suite would be relaxing, and the hotel itself was fine, but the entire process with the house was extremely stressful. And we know how stress effects most of us.

We're also still adjusting to our finances, minus my salary since I stopped working in February. I was denied for disability insurance (SSDI) so I have now turned my case over to an attorney. That was a good decision because she handles everything for me. It just will take a long time, probably some time mid-2015 before I will have definite final answer.

So we just made to decision to cancel our Disney cruise that we had planned for next year. Because it was a 2-week cruise, the pay-in-full date was sooner than a 7 night cruise, and there's no way we'd have the remaining balance in time to pay it off by end of December.

But next year is a big anniversary for us in July, so we are going to WDW to celebrate, instead of the cruise. And this gives us 5 additional months to pay it off before we go. I love WDW, so as disappointed as I am to cancel the cruise, I'm very happy to be going back to WDW and the Polynesian resort.

I've been seeing my rheumatologist and he has ordered some kind of test for me, for which my neurologist will perform. I can't remember the name of the test, but it's some kind of electrode test to see how bad my carpal tunnel is.

I still have debilitating fatigue.

Hugs and pixie dust to everyone.

 

[mommasita]

Hi everyone:

Wanted to check in. It's been a strange year so far. We spent 6 weeks living in a hotel while our main bathroom and family room were torn apart and then remodeled from water damage from a burst pipe. You'd think living in a hotel suite would be relaxing, and the hotel itself was fine, but the entire process with the house was extremely stressful. And we know how stress effects most of us.

We're also still adjusting to our finances, minus my salary since I stopped working in February. I was denied for disability insurance (SSDI) so I have now turned my case over to an attorney. That was a good decision because she handles everything for me. It just will take a long time, probably some time mid-2015 before I will have definite final answer.

So we just made to decision to cancel our Disney cruise that we had planned for next year. Because it was a 2-week cruise, the pay-in-full date was sooner than a 7 night cruise, and there's no way we'd have the remaining balance in time to pay it off by end of December.

But next year is a big anniversary for us in July, so we are going to WDW to celebrate, instead of the cruise. And this gives us 5 additional months to pay it off before we go. I love WDW, so as disappointed as I am to cancel the cruise, I'm very happy to be going back to WDW and the Polynesian resort.

I've been seeing my rheumatologist and he has ordered some kind of test for me, for which my neurologist will perform. I can't remember the name of the test, but it's some kind of electrode test to see how bad my carpal tunnel is.

I still have debilitating fatigue.

Hugs and pixie dust to everyone.

6 weeks must be rough indeed..
Giant hugs to you.

I have had to cancel myself, but SUPER glad to see what you have planned instead!!!

I think it is the EMG, but maybe I am wrong... I have had them all over the body, the hands isn't too bad... Lots of love and gentle hugs to you..

 

[SpiritedHaunts]

Hi all I just wanted to commiserate a bit about my conditions as of late.

I have always loved travel, though been very anxious about it at times. I have to WDW, DL(very long ago), and multiple out and in of country trips. So, while my nerves get to me I have had a ball.

Now it is just Mom and me going out. Due to issues I have since birth and developed my world has gotten smaller.

Mom helps all she can but she has none of these problems, at least to the same degree and therefore can't grasp a lot of my sadness with this new Fibro diagnosis.

Twice, this year alone I have had to miss two trips. One would be going on now.

Due to an error with SW we have some travel monies expiring and have a tentative plan to go to DL. This scares me. What if I can't go again? DL is basically all new to me and our original plan was to go to WDW to test traveling with Fibromyalgia.


So, anyone have a site to vent at or to gather strength from, aside from here?

 

[Mad4Dizne]

My last three trips, I have gotten so ill, I needed bed rest for several days on the trip. This last trip, it was so bad, it was about half of our days and almost had an ER visit (called local dr. and was waiting to see if things got worse). What are your best tips/advise for staying healthy and not getting overly frustrated (ex park commando)on your WDW trips? TIA!

 

[SeaSpray]

6 weeks must be rough indeed..
Giant hugs to you.

I have had to cancel myself, but SUPER glad to see what you have planned instead!!!

I think it is the EMG, but maybe I am wrong... I have had them all over the body, the hands isn't too bad... Lots of love and gentle hugs to you..

Thanks

Hi all I just wanted to commiserate a bit about my conditions as of late.

I have always loved travel, though been very anxious about it at times. I have to WDW, DL(very long ago), and multiple out and in of country trips. So, while my nerves get to me I have had a ball.

Now it is just Mom and me going out. Due to issues I have since birth and developed my world has gotten smaller.

Mom helps all she can but she has none of these problems, at least to the same degree and therefore can't grasp a lot of my sadness with this new Fibro diagnosis.

Twice, this year alone I have had to miss two trips. One would be going on now.

Due to an error with SW we have some travel monies expiring and have a tentative plan to go to DL. This scares me. What if I can't go again? DL is basically all new to me and our original plan was to go to WDW to test traveling with Fibromyalgia.


So, anyone have a site to vent at or to gather strength from, aside from here?

I'm so sorry. I don't know of another forum. Have you tried a search? Maybe there's a forum out there dedicated to illness such as fibromyalgia.

Edited to add: I just did a quick search and found this forum: http://www.fibromyalgiaforums.org/

One thing about DL is that it's tiny, compared to WDW. But honestly I'd rather go to WDW because I am so familiar with it, and with the ECV, I know exactly how to get around. And since we've been there a lot, we plan a lot of meals and resort breaks and just do what we can.

It's so hard when other people don't understand fibromyalgia. Unless you have it, you have no idea how it plays games with our bodies. It's rough to feel so physically "old" and people who are older than us can get around so well. That's why I think it's taken so long for people and doctors to really take it seriously, because of it being an invisible illness, and also because the symptoms can be mild to moderate to severe to debilitating, with no rhyme or reason.

Can you change the DL trip to WDW?

Feel free to vent here anytime

My last three trips, I have gotten so ill, I needed bed rest for several days on the trip. This last trip, it was so bad, it was about half of our days and almost had an ER visit (called local dr. and was waiting to see if things got worse). What are your best tips/advise for staying healthy and not getting overly frustrated (ex park commando)on your WDW trips? TIA!

I have had to rent an ECV for last several years. I rent from an offsite company and it is waiting for me at our resort when we check in, and then I can leave it with bell services when we check out. Are you staying at a WDW resort? If not, I believe they deliver to other places, as well.

This is the only way that I can go on a vacation and last longer than the first day. We stay at the Polynesian because of the location and ease of traveling from park to park; I can wheel right on to the monorail for the MK as well as the Epcot monorail right next door. Those are the two parks that we spend the most time in.

I also make sure to plan ADRS, resort breaks, and we use FastPass and don't wait in very long lines. We make sure to hit our favorite attractions first thing, that way later in the day we can take it easy.

I hope you have a great time!





I hope everyone is doing ok. I've had a lot of fatigue and brain fog lately.

Hugs and pixie dust to everyone.

 

[yoopermom]

Hi, everyone, been lurking and not posting, but just wanted to share my happiness that we have made an offer on a new home that has been accepted. My fibro has been flaring though since I work full time and have been trying to pack and handle the paperwork. The doctor said that I have to "pace myself", which I thought was hilarious! My DH is *very* supportive, says "stop lifting that", but I just can't wait for it all to be done!

So does anyone have any "survival" tips for when you just have to get through a few weeks no matter what it takes? I have a great support system (friends, parents, DH), but there is *so* much to do in such a short period of time...

On a philosophical note, it's really making me simplify and "weed out" my life. Essentials only is now my mantra!

Hugs and healing thoughts to all....

Terri

 

[mommasita]

Hi, everyone, been lurking and not posting, but just wanted to share my happiness that we have made an offer on a new home that has been accepted. My fibro has been flaring though since I work full time and have been trying to pack and handle the paperwork. The doctor said that I have to "pace myself", which I thought was hilarious! My DH is *very* supportive, says "stop lifting that", but I just can't wait for it all to be done!

So does anyone have any "survival" tips for when you just have to get through a few weeks no matter what it takes? I have a great support system (friends, parents, DH), but there is *so* much to do in such a short period of time...

On a philosophical note, it's really making me simplify and "weed out" my life. Essentials only is now my mantra!

Hugs and healing thoughts to all....

Terri

Hi there Terri, and WONDERFUL NEWS!

Well, I haven't worked in 5 plus years, but what I have found helps/helped is to make lists, and "try" to keep a schedule at best I can... And to accept help, this is the hardest for me.. I feel some need to be superwoman??

Congrats to you all.. I hope it goes as smoothly as possible..

 

[O2H O2H]

I really need to get to bed, but I just found this thread and had to post. I have fibro, among things, and am planning a week-long trip to wdw in Dec. The closer it gets, the more anxious I feel about being in pain, and wrecking everyone else's trip. I am sure everyone has lots of info about how to manage your issues, but this is a HUMONGOUS thread! I don't know how I am going to get to read it all, lol. I am renting an ECV for sure, though. Anyway, I will come back and post tomorrow probably. Take care, all!

 

[chewysmom]

Hi everyone! Just checking in. We leave for Universal/Disney in 23 days, and I'm scared. Scared that I have too much planned, scared I'm going to have a major flare and ruin the trip, scared we won't have fun (yeah right!) scared someone will get sick and stay in bed for days (which is what happened on our one and only other Disney trip. But, they had the flu and couldn't help it.)

*sigh* I have about 5 to do lists going, in addition to making sure my kids stay on track/get ahead in school. (we homeschool). I don't want to come back from vacation and try to play catch up! I did schedule our trip into our plans, but we also go to a homeschool co-op, and I have to make sure the homework from the co-op is done in advance.

Plus, we need new tires, need the oil changed, etc. Dh has been working crazy hours (58+ each week! ), so a lot of the things he normally takes care of pre vacation are going to fall on me this time.

But, in the end, it will all be worth it, right?? I just reread that, and it really sounds like I'm not grateful for our trip. I am SO grateful!! This trip has been planned in my heart for over 2 years, so I'm beyond blessed that we're even able to go. (financially, physically, etc). I'm just stressed that I'm going to miss something, not do something, etc. I think you all understand.

Fibro has been acting up as usual. I had to get a flu shot the first of October (mandatory where I work), and I swear that thing makes me flare every year. It made my blood sugar go really high, in addition to literally making me feel like I had the flu. It also caused my legs to hurt really badly that week after getting it. That has luckily passed, and my blood sugar has returned to normal but cold weather is upon us, and so are the normal aches and pains. I just can't tolerate the cold anymore!

My memory is shot. I can't remember the names from my fav tv show to save my life. Makes for interesting conversation when I'm trying to discuss the latest episode, and I totally blank out mid sentence. LOL Luckily, I have great coworkers who understand me.

Anyway, here's to hoping you all have a pain free day.

 

[SeaSpray]

Hi, everyone, been lurking and not posting, but just wanted to share my happiness that we have made an offer on a new home that has been accepted. My fibro has been flaring though since I work full time and have been trying to pack and handle the paperwork. The doctor said that I have to "pace myself", which I thought was hilarious! My DH is *very* supportive, says "stop lifting that", but I just can't wait for it all to be done!

So does anyone have any "survival" tips for when you just have to get through a few weeks no matter what it takes? I have a great support system (friends, parents, DH), but there is *so* much to do in such a short period of time...

On a philosophical note, it's really making me simplify and "weed out" my life. Essentials only is now my mantra!

Hugs and healing thoughts to all....

Terri

Congrats on your new home, Terri. That's exciting.

I understand the trepidation at the thought of all of the work that you have ahead of you, with the move. Great idea to try and weed out what you don't need. I've been doing the same since this past summer when we had to live in a hotel for 5+ weeks while work was being done on our house. The company had a huge dumpster parked in our driveway and they were more than willing to carry out and toss anything at all that we didn't want, in addition to the damaged areas of the house that was going to be remodeled.

As for how to prepare, I don't have any advice, because I wish I knew myself! lol The only thing that I have is prednisone to take on days that are very high pain. I don't take it often, usually I forget that I have it, but when I do take it, it helps with inflammation and also gives a little boost of "energy". The prescription is from my rheumatologist. I take it only when needed because it's not good for the body to be on prednisone long-term.

I'm glad that your DH is so supportive. I think it's important to have understanding family and friends around you.

Hi there Terri, and WONDERFUL NEWS!

Well, I haven't worked in 5 plus years, but what I have found helps/helped is to make lists, and "try" to keep a schedule at best I can... And to accept help, this is the hardest for me.. I feel some need to be superwoman??

Congrats to you all.. I hope it goes as smoothly as possible..

Hi mommasita How are you???

I hear you on the feeling the need to be superwoman. Sometimes it feels as though it's expected of me. I have to remind my family from time to time exactly how I feel every day, and that even though I try not to moan and groan all the time anymore, I still feel just as much pain and fatigue.

I think your suggestion of making lists is a good one. I always have to make lists now when something is going on beyond our day to day life, otherwise there's a good chance that I'll forget something, or do too much or too less on any given day and then be unable to complete whatever the situation is.

(ack, I feel like I'm rambling here. I hope I'm making sense, ).

I really need to get to bed, but I just found this thread and had to post. I have fibro, among things, and am planning a week-long trip to wdw in Dec. The closer it gets, the more anxious I feel about being in pain, and wrecking everyone else's trip. I am sure everyone has lots of info about how to manage your issues, but this is a HUMONGOUS thread! I don't know how I am going to get to read it all, lol. I am renting an ECV for sure, though. Anyway, I will come back and post tomorrow probably. Take care, all!

I've been having to rent an ECV for our WDW trips for many years now, and while it helps tremendously as far as being able to get around the parks, I still have to fight strong fatigue at times, and that means taking a nap back at the resort. This is why we stay at the Polynesian, so that it's quicker and easier to get back and forth, using the least amount of time traveling.

As far as pain, does your doctor recommend any medication? I just mentioned that on very bad pain days I have the option of taking prednisone, in addition to all of the prescriptions that I take.

It's been a few years since we've been on a big vacation like WDW but we're planning on going next July for our anniversary, and I'll definitely be bringing the prednisone with me.

Also, I recommend scheduling in planned breaks for meals, or even just a beverage and a snack. We tend to do all table service meals because it forces us to take a break a few times a day.

I hope you have a great time and that your pain level is low when you go.

Hi everyone! Just checking in. We leave for Universal/Disney in 23 days, and I'm scared. Scared that I have too much planned, scared I'm going to have a major flare and ruin the trip, scared we won't have fun (yeah right!) scared someone will get sick and stay in bed for days (which is what happened on our one and only other Disney trip. But, they had the flu and couldn't help it.)

*sigh* I have about 5 to do lists going, in addition to making sure my kids stay on track/get ahead in school. (we homeschool). I don't want to come back from vacation and try to play catch up! I did schedule our trip into our plans, but we also go to a homeschool co-op, and I have to make sure the homework from the co-op is done in advance.

Plus, we need new tires, need the oil changed, etc. Dh has been working crazy hours (58+ each week! ), so a lot of the things he normally takes care of pre vacation are going to fall on me this time.

But, in the end, it will all be worth it, right?? I just reread that, and it really sounds like I'm not grateful for our trip. I am SO grateful!! This trip has been planned in my heart for over 2 years, so I'm beyond blessed that we're even able to go. (financially, physically, etc). I'm just stressed that I'm going to miss something, not do something, etc. I think you all understand.

Fibro has been acting up as usual. I had to get a flu shot the first of October (mandatory where I work), and I swear that thing makes me flare every year. It made my blood sugar go really high, in addition to literally making me feel like I had the flu. It also caused my legs to hurt really badly that week after getting it. That has luckily passed, and my blood sugar has returned to normal but cold weather is upon us, and so are the normal aches and pains. I just can't tolerate the cold anymore!

My memory is shot. I can't remember the names from my fav tv show to save my life. Makes for interesting conversation when I'm trying to discuss the latest episode, and I totally blank out mid sentence. LOL Luckily, I have great coworkers who understand me.

Anyway, here's to hoping you all have a pain free day.

I hope you have a great time at Universal. It sounds like you have a lot going on before your trip and I hope you get it all done, with time to spare.

I don't think you sound ungrateful at all, not in the least. So many of us live with these health problems that make everyday life so much harder. This is a good place to vent, we'll never think you're complaining or anything like that.

 

[DisneyJillian18]

Hi all, haven't posted in awhile and I hope everyone is well. As I sit here having another terrible day at work, I began to wonder how many of you have stopped working due to your fibro pain? Or how many are on disability due to the pain? I always try my best to keep the best attitude possible when it comes to fibro, but am I just pushing it too hard? Not sure if it's just a bad day or if my body is finally just saying enough. Not judgment here on any answers! TIA soft hugs everyone

 

[SeaSpray]

Hi friends:


How are all of you doing? I haven't had the best few months lately, but today I'm feeling a little better. I can actually think a coherent thought. lol

I wanted to stop in and say Hi, and that I'm thinking of everyone

 

[rosanab1031]

Hello everyone! Long time no post! My life has been insanely busy these last few months! I have been going to school in Santa Monica once a week for a class, working full time at the school district, and working part time at DLR. I am also running my own Younique business which has a FABULOUS line of skin care products and cosmetics that are all natural based

It's been fun but I am EXHAUSTED! I got to perform in the Candlelight Processional as part of the cast member choir, fulfilling a dream of mine. It was absolutely beautiful and I made some great friends along the way.

Candlelight was last weekend so that's done with. I take the final for my class next Tuesday, and school is out for Winter break next Friday so it will be just me and Disney for a while. Haha.

It's been rough. I've been very stressed and it just got worse on Monday. I found out that the state changed it's policies about my position and now I no longer qualify to work once my waiver expires on 4/28. Which means I will be losing close to $3000 in income a month PLUS my health insurance. I don't know what I'm going to do. That is so close to the end of the school year that I most likely not be able to start a new job until the 2015-2016 school year. At least I have Disney to make some income. Gonna have to max out on hours there to bring in what I can.

Hoping everyone else is fairing well! Much love and many pain free hugs!

 

[chewysmom]

Rosanab, so sorry that you're losing your job and health insurance too. (((HUGS)))

 

[SpiritedHaunts]

And another possible missed trip.
My legs are hurting, feet often dragging, knees and hips locking. My whole right side feels like all my muscles are pulled and I am having trouble moving anywhere or anyway.

Saw my Neuro today after advice from my rheumatologist. She want blood test even added one in for progeria, I'm 35, so I doubt it is that, but I am very different in many ways.

We have a trip planned for next Saturday, including a flight. Last time we had a flight trip was to disney and after a few days my legs were very swollen.

So we are again on the fence of traveling. Spending money to stay locked up in a hotel room or hunker down until I learn my triggers better or at all.


So I am scared that these non fibro symptoms may lead to another diagnosis. I'd hate to travel in pain wasting 1000 dollars, but I want to travel. I'd hate to see that part of come to an end.


Thanks for reading.

 

[mamabunny]

SpiritedHaunts, would you consider using an ECV?

Don't think of it as anything other than a tool - a tool that will let you travel, and do what you want to, just from a seated perspective.

Our daughter has fibro - was diagnosed as a child, and literally has no memories of any time in her life without pain. She fought long and hard to stay out of a chair or ECV, but finally agreed to try one so that she could really enjoy the world. She doesn't use it all the time - just for the times when we know it's really far to walk, or when she is flaring hard.

Rent an ECV, and go on with your travels! Have fun, and enjoy yourself - and then come back here and let us know how it went!

 

[chewysmom]

Spirited Haunts, I hope you were able to go on your trip and that you had a good time!

Mamabunny, bless your dd's heart! Looking back, I had symptoms of fibro when I was a teen, but I can't remember any as a young child.

Hope everyone's New Year is off to a good start. I've been flaring like crazy lately. I decided to keep a diary of my painful days, to see if there are any patterns, etc and that thing is pages and pages long. SIGH My most recent complaint is waking up at 3 am (nothing new!) with pretty bad nausea b/c my back is hurting so badly. It's been every day this week. I've had this before, but it's been a while. I do have a bad back.

Does anyone else have a lot of chest pain? I've been checked out by the cardiologist, so it's not my heart, but my entire left side hurts. It feels like it goes straight through from my chest to my back and shoulder. I have a lot of issues with my left side for some reason (elbow, hand, fingers and shoulder).

 

[ThistleMae]

And another possible missed trip.
My legs are hurting, feet often dragging, knees and hips locking. My whole right side feels like all my muscles are pulled and I am having trouble moving anywhere or anyway.

Saw my Neuro today after advice from my rheumatologist. She want blood test even added one in for progeria, I'm 35, so I doubt it is that, but I am very different in many ways.

We have a trip planned for next Saturday, including a flight. Last time we had a flight trip was to disney and after a few days my legs were very swollen.

So we are again on the fence of traveling. Spending money to stay locked up in a hotel room or hunker down until I learn my triggers better or at all.


So I am scared that these non fibro symptoms may lead to another diagnosis. I'd hate to travel in pain wasting 1000 dollars, but I want to travel. I'd hate to see that part of come to an end.


Thanks for reading.

Rent an EVC! It was a lifesaver at the parks. I couldn't have gone without it. the pain will be there no matter what. Someday you won't be. Go have fun!

 

[SeaSpray]

Hi everyone:

Just wanted to check in and see how everyone is doing. I've been in a lot of (various) pain for the last several months, especially for the last 2 months. We've moved our July trip to the end of August. Honestly, with all of the snow we've gotten (over 7', with over 12' drifts), I don't care if I get to the Polynesian and just sit in the pool, and scoot around the parks a little in my ECV!

Pixie dust and hugs to everyone. Post if you can, but if not then believe me I understand. I'm thinking of all of you.