Fibromyalgia Thread

[tiggspring]

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!

Sending you good health vibes form here in PA. They didnt find what they expected last time hopefully it will be something completely benign this trip too. Here's to having something Wonderful to be thankful for this Thanksgiving!!

 

[tiggspring]

I'm kinda in Bright eyes boat only with no good reason. I'm SOOOOO tired. Been in Bed twice today. Did some grocery shopping a few miles form here and now I'm soo tired I feel like I'm drwoning. Kids yelling in backgound is driving me crazy and as I write this I can't think and I'm getting so dizzy. Guess its Frozen Pizza and back to Bed Gotta save my energy for Thankgiving. Really need the mental excape too though.

WISHING YOU ALL A HAPPY THANKS GIVING!!

Sending Pain free vibes Pixie dust and lots of energy to all

 

[brighteyes]

Wishing you all a Happy Thanksgiving.

Tiggspring, I hope you feel better soon! Sometimes we need extra rest. And well, sometimes might be all the time instead.

Chell, Welcome! I'm sorry I wasn't ignoring you, Just posted and left. I do that sometimes when I am procrastinating. (Which I do a LOT - especially when I am busy, busy, like NOW)

When I get really busy and stressed I get all OCD, I have to run up and down the stairs at night to recheck the locks, and drive back to my house in the morning to check it. Odd, isn't it??


Momelie, I hope your results were good. We are praying over here for you

Eduke, Nice to see you - I know I've been posting and running lately, not staying to read up on everyone. Let me tell you - my heated mattress pad, is heaven, I am going to LOVE sleeping in this weekend.


p.s. I was just at the dr with my son, we both have sinus infections, but he talked to me about my fibro and said to lose weight. I told him about the elliptical - and how little I do it each day, so I can walk the next day, and he said do more, even if it hurts. I don't want to make myself hurt, but he said it's the only way I will get into shape. His wife also has fibro and only takes tylenol for it. And she goes to the gym everyday, even when she's in pain, and he said by 11 am she is not sore anymore.

Well good for her, but now I feel like crap. I have never seen her have continuous pain everyday when she cries if she moves. I don't want to go through that but I don't want to be so overweight anymore. I know he's right but it's hard to force myself to do something I know is going to cause me pain. Ok, vent over.

Bye, talk to you all later.

Pixie dust for the best day you can have.

 

[tiggspring]

Wishing you all a Happy Thanksgiving.

Tiggspring, I hope you feel better soon! Sometimes we need extra rest. And well, sometimes might be all the time instead.

Chell, Welcome! I'm sorry I wasn't ignoring you, Just posted and left. I do that sometimes when I am procrastinating. (Which I do a LOT - especially when I am busy, busy, like NOW)

When I get really busy and stressed I get all OCD, I have to run up and down the stairs at night to recheck the locks, and drive back to my house in the morning to check it. Odd, isn't it??


Momelie, I hope your results were good. We are praying over here for you

Eduke, Nice to see you - I know I've been posting and running lately, not staying to read up on everyone. Let me tell you - my heated mattress pad, is heaven, I am going to LOVE sleeping in this weekend.


p.s. I was just at the dr with my son, we both have sinus infections, but he talked to me about my fibro and said to lose weight. I told him about the elliptical - and how little I do it each day, so I can walk the next day, and he said do more, even if it hurts. I don't want to make myself hurt, but he said it's the only way I will get into shape. His wife also has fibro and only takes tylenol for it. And she goes to the gym everyday, even when she's in pain, and he said by 11 am she is not sore anymore.

Well good for her, but now I feel like crap. I have never seen her have continuous pain everyday when she cries if she moves. I don't want to go through that but I don't want to be so overweight anymore. I know he's right but it's hard to force myself to do something I know is going to cause me pain. Ok, vent over.

Bye, talk to you all later.

Pixie dust for the best day you can have.

-bright eyes sorry your sick.

What your dr said makes me really angry and he is WRONG. First of all it is extreamly unprofessional to compair one pt to another. The fact that it is his wife makes it even worse. He wouln't tell you that it was your fault if you had cancer and it didn't go into remission just beacuse his wifes did! Every pt is different especially with diseases like ms,lupus, fms. It shows a fundamental lack of understanding of the disease.

If you push as hard as he wants you could risk being bedridden..I know as it happened to me. It could take months or more to recover. My previous drs advise was best do what you think you can then just a few steps more. your dr's wife has a dh that makes good money, she may not work, probably has a support system etc. She may have a maid. So her lack of stress let's her exersize. You are a single mom, with a disabled mother far who has to do everything without a support system. Dear dr dosnt have a clue.

I thought with the kids all at school my like would get so much easier. But w dh gone most of the time, the lack of bacfkup has left me exhasted.I was much better at disney when I walked for 5min stood for 5 then sat then did it all again. With dh doing half the childcare, me taking 2 showers a day, eating 3 meals, no financial stress because even our meals were prepaid,no need to drive and full maid service. Oh if only my real ilife was like that maybe I could manage the fibro better!

Hope that made sense as I'm on my phone.

Happy turkey day to one and all!

 

[brighteyes]

-bright eyes sorry your sick.

What your dr said makes me really angry and he is WRONG. First of all it is extreamly unprofessional to compair one pt to another. The fact that it is his wife makes it even worse. He wouln't tell you that it was your fault if you had cancer and it didn't go into remission just beacuse his wifes did! Every pt is different especially with diseases like ms,lupus, fms. It shows a fundamental lack of understanding of the disease.

If you push as hard as he wants you could risk being bedridden..I know as it happened to me. It could take months or more to recover. My previous drs advise was best do what you think you can then just a few steps more. your dr's wife has a dh that makes good money, she may not work, probably has a support system etc. She may have a maid. So her lack of stress let's her exersize. You are a single mom, with a disabled mother far who has to do everything without a support system. Dear dr dosnt have a clue.

I thought with the kids all at school my like would get so much easier. But w dh gone most of the time, the lack of bacfkup has left me exhasted.I was much better at disney when I walked for 5min stood for 5 then sat then did it all again. With dh doing half the childcare, me taking 2 showers a day, eating 3 meals, no financial stress because even our meals were prepaid,no need to drive and full maid service. Oh if only my real ilife was like that maybe I could manage the fibro better!

Hope that made sense as I'm on my phone.

Happy turkey day to one and all!

What you say does make sense, and I know that, I just needed some support. I know his wife and she struts around in high heels like nothing, I can barely walk in my runners with orthodics in them. She does go to the gym no matter what. She does work very part time at the clinic where I used to work as a book keeper. Well he even said that when she gets up in the morning it takes her till 11 to walk better.

I know him, he is a good dr, I worked with him for 4 years. But I also know they all think that my problem is my weight, but they also said that when I was skinny. Before it was to quit smoking, then I quit, and nothing. Then they said to lose weight, I did, and nothing ( I was good here, but lost about 30 lbs.). THEN my pain got worse, and nothing, then I gained about 90 lbs in two years, and now we're back to the weight. They said this all too about my blood pressure which has been steadily close to high for about the last 3 or 4 years too.

I will try to excercise more, but not to make it so I can't get out of bed. I have to make it to school everyday and my placement. That is why I quit there cause it was 11 hours a day standing on my feet, and not being able to walk when I got home even to make dinner was enough for me.

Thanks, you helped, but I really hope you feel better and have a HAppy thanksgiving. <3

Stephanie

 

[cosine4]

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!

 

[chell]

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

Hello! I just started looking around more on the disABILITIES section once I was diagnosed with Celiac. I don't know why I never looked here for Fibro & my other stuff.

Do you sleep really well one night then terrible the next? I'll get in a great nights sleep about once every few months.

 

[chell]

Chell, Welcome! I'm sorry I wasn't ignoring you, Just posted and left. I do that sometimes when I am procrastinating. (Which I do a LOT - especially when I am busy, busy, like NOW)

When I get really busy and stressed I get all OCD, I have to run up and down the stairs at night to recheck the locks, and drive back to my house in the morning to check it. Odd, isn't it??

p.s. I was just at the dr with my son, we both have sinus infections, but he talked to me about my fibro and said to lose weight. I told him about the elliptical - and how little I do it each day, so I can walk the next day, and he said do more, even if it hurts. I don't want to make myself hurt, but he said it's the only way I will get into shape. His wife also has fibro and only takes tylenol for it. And she goes to the gym everyday, even when she's in pain, and he said by 11 am she is not sore anymore.

Well good for her, but now I feel like crap. I have never seen her have continuous pain everyday when she cries if she moves. I don't want to go through that but I don't want to be so overweight anymore. I know he's right but it's hard to force myself to do something I know is going to cause me pain. Ok, vent over.

Thank you for the warm welcome!

I have OCD too. At night if I don't get back up to check the door my husband has to because I ask him a million times about it. I have ADD too, to a certain extent. So I tell everyone I have ODD.

Warming mattress pads are awesome! We have a thick mattress pad so we have an electric blanket. I turn it on early to warm up the bed. Oh how I love that thing.

The doctor was wrong to compare you. I sure hope his wife isn't his patient because that was a HIPPA violation if she is.

Just like Tiggspring said, you can't compare one patient to another. Doctors don't fully understand what Fibro is like and how it feels to us. They don't know how much it takes out of us to do what we do every single day. Some days I'm fine to get up and go to work. But other days it is all I can do to get out of bed and get dressed. By the time I get to work I can barely move. My eyes don't want to stay open because I'm so exhausted.

Yes, I know I am fat and I need to loose weight. I know I need to do something about it. But when you feel this terrible for so long it is hard to, especially when you have to work. I'm sure most all of you have families you have to take care of. Your work day doesn't end when you get home. I'm thankful to have a wonderful husband who spoils me and takes great care of me when I get home. We just got the treadmill back out but I haven't been able to get on it yet. I'm just now not feeling exhausted every second of every day.

They need to understand that we really do try. We want to be better, we really do. But it isn't as easy as just doing it.

As far as taking a Tylenol I may as well take a sugar cube.

 

[chell]

Stephanie just don't push yourself. It isn't worth causing any damage or causing yourself more pain. I started going to the gym last year to try to loose weight and get healthy. It lead to bursitis in my shoulder, both knees and tendinitis in my elbow. Since then I've had at least 5 cortisone injections. And I was using the machines on the lowest settings.

No one else knows your body better than you!

 

[brighteyes]

Chell,

Thanks, I know you are all right, I was just feeing crappy after I saw him. Right now my fingers are all swollen, I have been having late night cause it's end of the semester.

I am having a hard enough time just getting through the day with school and homework right now.

Stephanie

 

[brighteyes]

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!

Hey Welcome Cosine4!

This last trip was quite different from the first. I was way more tired and way more sore. Our third day in, we left the MVMCP very earlydue to the fact that I just couldn't walk anymore. Limping is an understatement.

I just said when it's time to rest, it's time to rest. Period. We didn't do the parks commando. We also had a few days where we just stayed at the resort.

There were other times when I was ok, just slow. Those were the times that my son would pull me through the crowds by my hand. Which was OK, cause it was easier to walk with him pulling me

He was supportive and understanding. So it wasn't really an issue, sometimes we just waited and sat on a park bench. I don't know what to tell you, other than don't push yourself too hard.

I didn't want to rent and ECV or wheelchair thingy cause I saw people in those and when the parks got crowded they couldn't move without running into people. It looked like more trouble than it's worth.

Maybe the others have some better suggestions for you.

Stephanie

 

[chell]

Chell,

Thanks, I know you are all right, I was just feeing crappy after I saw him. Right now my fingers are all swollen, I have been having late night cause it's end of the semester.

I am having a hard enough time just getting through the day with school and homework right now.

Stephanie

I understand. Somehow they really know how to get under our skin too. Good luck with all that homework!

 

[brighteyes]

DONE DONE DONE

I AM OFFICIALLY DONE ALL OF MY PAPERS FOR THIS TERM!!!!!!!!!! I HAVE BEEN SICK SINCE LAST NIGHT. bad tummy pains, but I am done..

I AM SOO EXCITED. JUST THREE MORE EXAMS TO GO OVER THE NEXT TWO WEEKS, 4 MORE DAYS AT PLACEMENT AND I AM DONE FOR THE SEMESTER.

I CAN REST - I CAN SLEEP IN!!!!!!!!!!!

I AM SORRY IM YELLING BUT I AM SO EXCITED!!!!!!!!!!!!! and I got 75% on my last exam which I was sure I failed.

Stephanie

 

[brighteyes]

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

lucky lucky you, Christmas time is sooo beautiful there. My favourite. Wish I could go. Enjoy your trip. I will post more tomorrow night.

Stephanie

 

[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!

DId you know that they make canes with colapsable seats? not the round ones but slings that are less obvious. If you need to sit and assistance with walking this may help. I basicly hibernated for several weeks and backed off my meds the weeks before so they worked better a WDW. Used ridmax to limit the distacne between rides, aguments with kids and shorten lines. It worked great kids didnt fight because if it wasnt next on list we didn't go (eveyone had their favorites on the list). I was packed weeks before we went and the car was packed two days before. Think of what stresses you most and find a way to ilimnate that. Have a great trip. Wish i were you!

 

[tiggspring]

DONE DONE DONE

I AM OFFICIALLY DONE ALL OF MY PAPERS FOR THIS TERM!!!!!!!!!! I HAVE BEEN SICK SINCE LAST NIGHT. bad tummy pains, but I am done..

I AM SOO EXCITED. JUST THREE MORE EXAMS TO GO OVER THE NEXT TWO WEEKS, 4 MORE DAYS AT PLACEMENT AND I AM DONE FOR THE SEMESTER.

I CAN REST - I CAN SLEEP IN!!!!!!!!!!!

I AM SORRY IM YELLING BUT I AM SO EXCITED!!!!!!!!!!!!! and I got 75% on my last exam which I was sure I failed.

Stephanie

YEAH STEPH!!! WAY TO GO!




Bonnie

 

[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!

Great point about the scooter! I too wouldnt use a scooter. For one week I wanted to be "normal" and looking at that thing waiting for me at the end of each ride would have ruined the magic!!!! I went to WDW to get away from my problems and that would have been a constant reminder. I have trouble judging distances sometimes, bump into walls, Park crooked (yep thats me) so that would have been an unepected stress if I used the scooter. For the drive down you may want to get a massaging, heated back rest to take advantage of that long ride. BenGay was the sent dejour on the ride up/down and everyday at the park. Wasnt that romantic for our 15 aniversary?

A the park we stayed in quadrants one day Fantcy/toon/tomorrow next frountire/ advanture and used the train to get to back of park on the adventureland/ frountireland day. We did this at Epcot and AK too. We also had all the kids carry a fanny pack with H20, a snack, hand sanitizer, neck cooler, anything they would have asked us for with that annoying "Mom I need..." Even my 4 yr old was almost compleatly self sufficent We planned to retrun to the room every afternoon when everone else was eating or in long lines, Since we had this in our plan it wasn't moms fibro that caused us to go back it was a planned break for the pool etc. I also took two showers a day. upon awaking and going to bed to keep me loose. We set out kids clothes night before to keep am chaios to a minimum and allow kids to be self sufficent in their am routines. Having a pretty set plan that me and DH would only alter if my fibro was in control was the key. Oh and Dh was home two days upon retruning so I could crash and not worry about the kids. The crash lasted several months but it was still worth it

Hope some of these ideas help. For me it really is the little things that add up to exhastion at the end of the day.

Welcome to the Thread!

Sending pain free vibesand pixie dust to all

 

[brighteyes]

The only advice I have for you what worked on our last trip was to go with the flow. Like tiggspring said, we picked our musts a few or 3 or 4 out of each park, or the same ride over and over again in some instances.

Once they were done, everything was gravy. SOmetimes we got up early, sometimes we slept in. We were usually back at the resort by 9 or 10.

We were really unplanned each day. If we left for the park at noon, then we stayed till dinner and came back to the resort. If we left in the early am and had dinner plans somewhere then we came back after dinner to the resort. Sometimes we didn't make it to the parks till after lunch or dinner time, then we stayed late.

It really depended on where we had dining reservations that day. One day after lunch at PH DS felt sick so we went back to POP for the day. The next day I was sick for at least 24 hours with a tummy bug and had to stay in the hotel room.

Our third day, we were so tired that we left our Christmas Party early cause we both couldn't walk by about 10:30 waste of money i know but I didn't care. All I needed was to get off my feet for the night. A lady beside me watching fireworks moved so I could sit on the ground. I told her thanks but I'll never get up again. lol.

She helped me up when it was over. And what a feat that was lol.

I suggest just don't push yourself, rest when you need to, otherwise you will have a big flareup and it will affect your trip. Also what helped was having to sit down for an hour or so at our table service restuarants every day.

What also helped me is I alternated between really good flip flops and my runners with my orthodics.

Hope that helps some.

 

[brighteyes]

Oh forgot about carryng stuff. I wore cargo shorts/pants with lots of pockets in, and so did my DS. It's just us and he is older, so not much to carry.

Since the weather was not so h ot, water was not critical to carry. However, from our August trip I had a water bottle holder that hooked onto my belt. It is a mickey shaped thing which fits around your water bottle with a carbiner (sp)??. So when I start out, I am carrying on bottle but have my spare around my hip, but those go fast. The rest of the time I use a fountain or buy a drink, but are nto usually in the parks that long. It was December anyway so not critically hot.

And my camera bag on a lanyard around my neck. In my camera bag, I carry batteries, mints and a few candies for me, cause I have cotton mouth. A few advils, a few bandaids, and a small sample pack of polysporin (in case of blisters).

For money, and cards, (KTTWC) I have a mickey head pulley on a retractable cord with a clear zippered thing that holds the cards and any cash. This clips onto my belt and is hidden in my pocket. SO I am basically no hands at the park.

In my other pocket, I have a mini bottle of sunscreen lotion, Lipbalm is also on a lanyard around my neck. Got it from the dollar store.

That's it. I went my first day at Disney in August with a mini backpack and NEVER again. So hot on my shoulder and rubbing and sunburn, no way. The second day I bought all the zippy things and holders in the gift shop and was on my way.

Stephanie

 

[brighteyes]

Ok, this will be the big test. I changed the stride level on my elliptical and I can use it much easier without panting like im gonna die.

So I did three different sets about 4 or 5 mins each. It was much easier, did not hurt my knees, just got tired.

Had a hot shower after to keep my muscles loose, so we'll see how much it hurts tomorrow. But I have my heated mattress pad on tonight, so that will help.

I feel so proud of myself.

Hope you all had a good Thanksgiving weekend. It was your Thanksgiving right?

Pixie dust for all.