Fibromyalgia Thread

[tiggspring]

A little pity party here. I don't let the fibro really get to me that often but this week has been horrid and stressful which I might talk about later. Right now I'm really embarrassed by something that happened at my DD girl scout rededication ceremony. We Have never gone to this before so I really wanted her to participate.

We were meeting in a church and DD got us seat right up fount then promptly ditched me and her siblings for her friends. The the town GS leader started going around with little papers asking people to speak. When she got to me I said I cant. since I never really know what is going to come out of my mouth when I'm reading aloud I do not do this in public . I never know until its too late if I might miss words, not understand what I'm reading, read something and understand it but say something else. or just have a big hiccup and not say anything. These things happen at home when I relaxed and reading to family. I'm certainly not going to show off this talent out in public. Well she wasn't going to take no for an answer and says more loudly your not going to read this? I replied I' cant my Fibro...at which point she gets even louder and very annoyed you mean you cant read this? I said I'm not Joking about the Fibro and she stomps off. Now about 50-75 people in our small town are behind me. Many don't know me yet because I've been wrapped up with the kids and handling my Fibro so unless thay sat next to me at a Soccer game or something they know of me but the don't "know" me. I was soooo Mortified. I was working on my masters when I got sick and now reading is the bane of my existence and she made me look like a fool in front of all those people and my kids. My kids took it all in stride and just ignored it but It was hard for me no to cry the whole time we were there. I work really hard to "look" normal while we are out. All the troops leaders know my limitations because I learned a long time ago I cant hid them without looking like a freak sometimes. My oldest DD told me when we got home to not let that woman get to me she is bossy. I'm just so exhausted, and it was a bad week, now this. Tonight I have to go to a Boy Scout dinner (at least I don't cook!) and some of the same people will be there. they know me so it shouldn't be too bad but I still feel a bit shell shocked..

Am I being too sensitive?

Bonnie

 

[tiggspring]

Hey general question while I think of it. Does flying make you crash? oops LOL I mean make your symtoms worse?

I was reading blogs when I was first diagnosed and people were reporting relapses when they flew. Since the Bpressure affects me so much as the storms come in and out, I have avoided flying (cant afford it anyway). If I ever wanted to fly what do you think?

 

[EDuke98080]

Bonnie, sorry you had such a traumatizing experience. I am sure that it was worse for you than the kids, they are usually so resiliant, much more so than us! I hope you feel better and that the boy scout dinner was more enjoyable. It probably felt worse to you than normal as you were tired and had a bad week. I find that when I have had a bad time I react and are more sensitive to others. For example, yesterday I went to bed at 8PM and layed there with tears running down my face for two hours. My daughter had said something that bothered me then my son did the same and with my disks flaring to the point of agony I just felt the need to cry. My poor DH was trying to help and I wouldn't even talk. I went to sleep at 11:30 and slept until 1:30 and then layed awake until 5AM. I hope you are already feeling better today! Sounds like it was a rough week all around.

pain free pixie for all!

Erika

 

[EDuke98080]

Oh yeah, flying.... I hate flying and it gives me major angst but I do it anyways. It usually take about 3 days to calm down and be able to sleep after a trip both on the way and the way home so my symptoms always get worse when I fly.

 

[tiggspring]

Bonnie, sorry you had such a traumatizing experience. I am sure that it was worse for you than the kids, they are usually so resiliant, much more so than us! I hope you feel better and that the boy scout dinner was more enjoyable. It probably felt worse to you than normal as you were tired and had a bad week. I find that when I have had a bad time I react and are more sensitive to others. For example, yesterday I went to bed at 8PM and layed there with tears running down my face for two hours. My daughter had said something that bothered me then my son did the same and with my disks flaring to the point of agony I just felt the need to cry. My poor DH was trying to help and I wouldn't even talk. I went to sleep at 11:30 and slept until 1:30 and then layed awake until 5AM. I hope you are already feeling better today! Sounds like it was a rough week all around.

pain free pixie for all!

Erika

-Thanks for the support! My DH came home and I finally told him since I wanted him to study the two days he was away. He was fuming! I'm much calmer now. It just really hit me where it hurts. I hate feeling incompetent or stupid and Fibro often make me feel both. My husband says if I had a broken leg I wouldn't blame myself for limping so I shouldn't blame myself for my brain "hiccups". I picked a keeper

It has been a rough few weeks. What time I have had I have been burying myself in planning our next trip and starting the Photopass Photographer location thread. Using Disney to get away from reality for awhile otherwise I seriously think I could get depressed. But I know I can come here for understanding and now I feel a little more productive with the new thread hoping to help some others get the most for their money. Guess I'll be dead before you get that social worker/counselor mentality out of me

 

[brighteyes]

Flying - well when I flew TO disney I flared a bit but that's cause I didn't get any sleep before we left. And on the way home, up all night before we left again. And had a MAJOR crash when I came home, major pain and crying for days.

Tigg - I hope you are feeling better and having a better day. No, you are not being too sensitive. She was a jerk for the way she acted. It is not even about the fact that you have fibro it's about the fact that she ASKED you and you said NO -- PERIOD!!! Whether you have an invisible disability or not, she should have accepted your answer. You did not need to give her an explanation. What if you couldn't read?? Would she still have pestered you?

As far as I am concerned she looks like an (*&. I do not like to read in front of people either, or speak. I would have said No as well. It is a choice, and she was out of line. I would not worry what others think, she probably looked worse for badgering you. And it sounds like she is rude and people already know it.


Stephanie
BTW - the dr said I have some abnormality with my heart but its nothing to worry about, nothing major, but is sending me for ultrasound now for my gallbladder I really hate tests.

Pixie dust to all.

 

[tiggspring]

Oh yeah, flying.... I hate flying and it gives me major angst but I do it anyways. It usually take about 3 days to calm down and be able to sleep after a trip both on the way and the way home so my symptoms always get worse when I fly.

Ok well if it will make the insomnia come on I think I will stick to driving. As long as the drive is for us I still think it is less stressful. No security, delays and no $1000+ added to our budget On the ride down just took my flexeril, let my hubby drive and slept because flexeril knocks me on my butt. I love driving on trips so I drove a little before the meds but not much.

 

[tiggspring]

Hi Everyone,

Hope all of you are having a pain free day! Ireland Nicole congrats on the job! That is awesome that they are willing to be flexible with your hours! I have been thinking about going back to work but am not sure if I will be able to find something flexible, also not sure what I would want to do. I was a paralegal for years until we moved and now I am sure being out of the field for six years and it being a new state with different laws I am not sure my foggy mind could handle trying to learn all of the differences, LOL.

Brighteyes I am glad to hear that the college makes accommodations for you. This is great to hear, especially as my son gets older and really wants to go to college but may need accommodations made for him. I wasn't sure if colleges would do such a thing to this is very encouraging!

On another note, I noticed that a lot of you gals mentioned cooking in your crock pots as it is much easier for some of us. I thought it might be nice to share some recipies with each other (since I am using mine today) and didn't know if any of you would be interested. Today I am making Taco Soup so I thought I would share that recipe. It is so yummy we call it Crack Soup! Here it is:

Taco Soup
2 cans black beans
2 cans kidney beans
1 can navy beans
1 can corn
1 can rotel
1 pkg taco seasoning mix
1 pkg ranch dressing mix
1 lb ground beef (cooked)

Throw this in crock pot, mix and cook on high for 6 hours or low for 8 hours. Serve with cornbread, yummy!!!!

Hope you all have a great day!

Ronda

-This looks yummy! Sorry it took so long to post this its been almost a month! I would remember then forget then remember then not be able to find the recipe and so it goes I love this roast from Mr food. I do it in the crock pot on low for 10+ hours and on high for 4 but it is not a tender then. It was originally for the oven. As Mr. Food would say "It's sooo good"!


Cola Roast

1 teaspoon salt
1/2 teaspoon black pepper
1/2 teaspoon garlic powder
One 4 to 5-pound boneless beef bottom round roast
1 can (12 ounces) cola
1 bottle (12 ounces) chili sauce
2 tablespoons Worcestershire sauce
2 tablespoons hot pepper sauce

 

[tiggspring]

Flying - well when I flew TO disney I flared a bit but that's cause I didn't get any sleep before we left. And on the way home, up all night before we left again. And had a MAJOR crash when I came home, major pain and crying for days.

Tigg - I hope you are feeling better and having a better day. No, you are not being too sensitive. She was a jerk for the way she acted. It is not even about the fact that you have fibro it's about the fact that she ASKED you and you said NO -- PERIOD!!! Whether you have an invisible disability or not, she should have accepted your answer. You did not need to give her an explanation. What if you couldn't read?? Would she still have pestered you?

As far as I am concerned she looks like an (*&. I do not like to read in front of people either, or speak. I would have said No as well. It is a choice, and she was out of line. I would not worry what others think, she probably looked worse for badgering you. And it sounds like she is rude and people already know it.


Stephanie
BTW - the dr said I have some abnormality with my heart but its nothing to worry about, nothing major, but is sending me for ultrasound now for my gallbladder I really hate tests.

Pixie dust to all.

-Thanks Stephanie I was just about to post to you to see how you are doing. Imagine we are both up at 1am how odd! Gladd to hear you can take a licking and keep on ticking Ok really showed my age ther huh? Do you have a buring pain that goes through your chest-stomach and out you back right in the middle? I had that really bad on/off when DH1 was sick. My Grandmother had gallbladder and so we tossed it up to that. It still happens every so often but much milder. You would think Fibro would make it worse.
Classes going Ok. DH seems much calmer now that he got away to Cleveland this week. Finished one paper one to go. Although he has had assignments to turn it these are the only two things he get graded on for his two classes. Pass or Fail alot of pressure for him so Im glad he got some perspective the last two days

Bonnie

 

[tiggspring]

oops ment to ask you if classes are going ok?

 

[chell]

Hi everyone! Somehow I just now found this thread. I know, I know. I'm one of those bad DISers who is going to post before I read the entire thread. Well it is just after 1 am and I don't think I can stay up long enough to read the entire thing.

Unfortunately for me I believe I've had Fibro since I could walk but the doctors never knew what it was. It wasn't until about 13 years ago that I was diagnosed. About the same time they started doing more blood work on me and saw that I have high inflammation levels and a high sed rate. Right now every 3 months I go see my Rheumy. He's really nice & easy to talk to so I actually don't mind. But I would like to get back to seeing him every 6 months or even once a year.

Three weeks ago I was diagnosed with Celiac Disease and I started a gluten-free diet. I can already feel a difference and I'm not having as much pain. Well today is an exception. I over did it today. We did too many errands today. This was the first Saturday that I've not had to go out of town that I didn't take a nap in well over 6 months.

My hope is that this new diet will really help me to feel better. I am excited about the changes I'm already seeing. So far my headaches have even been less. Like someone else early in the thread I'm also on Topamax. I want to come back off of it. I don't like how it messes with my thinking.

My sister & I can call each other when the weather is about to change to see if the other is getting a headache or hurting badly. Sometimes we know it before the weatherman!

When I'm at WDW I don't hurt near as bad. I don't know if it is something in the FL air, if it is the excitement of being at WDW or if it really is something to do with the climate change but I like it!

 

[tiggspring]

Ok Final post really should try to get to sleep

IrelandNicole havent heard from you in quite awhile. How is the new job going?

Momelie You had a scan recently didnt you? How are you doing?

Toocheri recoving from your trip?

Sending Pain free vibes and pixie dust to all

 

[tiggspring]

Hi everyone! Somehow I just now found this thread. I know, I know. I'm one of those bad DISers who is going to post before I read the entire thread. Well it is just after 1 am and I don't think I can stay up long enough to read the entire thing.

Unfortunately for me I believe I've had Fibro since I could walk but the doctors never knew what it was. It wasn't until about 13 years ago that I was diagnosed. About the same time they started doing more blood work on me and saw that I have high inflammation levels and a high sed rate. Right now every 3 months I go see my Rheumy. He's really nice & easy to talk to so I actually don't mind. But I would like to get back to seeing him every 6 months or even once a year.

Three weeks ago I was diagnosed with Celiac Disease and I started a gluten-free diet. I can already feel a difference and I'm not having as much pain. Well today is an exception. I over did it today. We did too many errands today. This was the first Saturday that I've not had to go out of town that I didn't take a nap in well over 6 months.

My hope is that this new diet will really help me to feel better. I am excited about the changes I'm already seeing. So far my headaches have even been less. Like someone else early in the thread I'm also on Topamax. I want to come back off of it. I don't like how it messes with my thinking.

My sister & I can call each other when the weather is about to change to see if the other is getting a headache or hurting badly. Sometimes we know it before the weatherman!

When I'm at WDW I don't hurt near as bad. I don't know if it is something in the FL air, if it is the excitement of being at WDW or if it really is something to do with the climate change but I like it!

Ok I lied couldn't help myself..Welcome chell!

You will find lots of great info here on what we are all doing to cope. One thing that may interest you is a story that was on Npr about a virus mxrv that is linked to CFIDS and Fibro. They have found it in the majority of people with these diseases more than 70% in i'm remembering correctly. Here are my two postings adout that so you dont have to search through 23 pages!!

Fibromyalgia Thread - Page 13 - The DIS Discussion Forums - DISboards.com
posting 188

Fibromyalgia Thread - Page 19 - The DIS Discussion Forums - DISboards.com
Posting #281

You couln't ask for a better group of people than those I have met here

Sending Pain free vibes and pixie dust to all

 

[chell]

Thank you Tiggspring for the warm welcome and the info. I'll have to check that out!

 

[brighteyes]

Classes are going ok - only three more weeks. This week I have two more papers due, both about 10 pages each. I finally asked for an extension on one of them, just told my teacher I cannot do it anymore. It took me 4 days to recover from the last week from hell.

That takes some of the pressure off. But I also have a presentation this week. After this week, then the first week of Dec I have two exams, and the last one on the 10th, then I am done done done.

I find out if I pass or failed my 2nd exam this wed. I am worried about this one, I know the stuff but had serious brain fog and did not study the right stuff cause apparently too exhausted.

So we will see. At this point I really don't care, I am just too tired. I am also emotionally drained because this course is really intensive in the aspect that I am really finding out so much about myself and why I am the way I am, it all goes back to childhood, and it is really neat but also makes you take a deep breath that now is the time to change things.

Hello to the newbies -- I have not read alot there is a lot I need to catch up on but won't do that till this weekend.

Hope you are all well, and I will catch up soon.

Pixie dust to all.

 

[brighteyes]

OOH - I AM SOOO EXCITED!!!!!!!!!!!!

I forgot to tell you all t hat I got my heated mattress pad for my birthday last night!!!!!!!!!!!!

I will put it on tonight and let you know how it was. I cannot wait to try it!!!!!!!!!!!!!!!


Whoever invented that sucker should be awarded the nobel peace prize.

 

[EDuke98080]

OOH - I AM SOOO EXCITED!!!!!!!!!!!!

I forgot to tell you all t hat I got my heated mattress pad for my birthday last night!!!!!!!!!!!!

I will put it on tonight and let you know how it was. I cannot wait to try it!!!!!!!!!!!!!!!


Whoever invented that sucker should be awarded the nobel peace prize.

YAY! You'll love it! And Happy Birthday!

 

[EDuke98080]

Hi Chell!

It's funny that I have seen you on the GF threads and now you landed here too! Looks like we have alot in common with the Celiac & Fibro. I felt much better with my pain level after being gluten free, now if I could only fix the sleeping issue....

Hope everyone had a great weekend!

Erika

 

[Momelie]

Hi there!

Had the PET scan last week, and all I can say is thank goodness for sedation!

I did make it through, though. FYI - I was so radioactive, my loopy self had to call DH and tell him that I wasn't allowed to ride home in the same car as our under 20 year old daughters "or else we would have alien looking grandchildren." Yep, I really said it and he really had to translate it into practical information, LOL! After that, he removed all sharp objects from the bathroom, etc. and made sure I didn't make any sudden moves.

I get the results tomorrow afternoon, and I'm scared spitless! The girls are doing their part to distract me by being home from school all week and trying to start WWIII in the living room, when they aren't trying to burn the house down learning to cook. I have to get through my Shakespeare lecture and start the film tomorrow, while antsy freshmen want to leave for their Thanksgiving break, and since I'm not able to have any of my arthritis meds till this little episode is resolved, I'm registering about a 47 on a 1 - 10 pain scale, and my knee is swollen to about triple the normal size.

Sigh.... another day in the neighborhood!

 

[tiggspring]

OOH - I AM SOOO EXCITED!!!!!!!!!!!!

I forgot to tell you all t hat I got my heated mattress pad for my birthday last night!!!!!!!!!!!!

I will put it on tonight and let you know how it was. I cannot wait to try it!!!!!!!!!!!!!!!


Whoever invented that sucker should be awarded the nobel peace prize.

OMG you and you HOT boy friends. At least this one it will turn on and off when you want it too

On the ohter hand sorry you are having a rough time