Fibromyalgia Thread

[onnawufei]

I got back from my trip Saturday and am sort of... I don't know. I guess I'm a little confused by a few things.

First off I obviously survived my trip. In the end my biggest issue wasn't my fibro, it was actually the fact that I was getting some insane blisters on my feet. My fibro seemed to play a very small part in my pain, which is why I'm confused.

At home I'm sitting on the couch or sitting at my desk at work, sometimes walking around taking pictures and quite often feeling miserable. Loads of pain in my back, neck, shoulders, etc.

At Disney I was on my feet constantly, doing the commando style touring even though we said we weren't going to this year (we relaxed a bit but yeah, not much) and I wasn't miserable. I had a little bit of pain unrelated to my feet, but there were only two times it was notable. One day at Animal Kingdom I was in so much pain I started crying while I was waiting for food. No matter how badly my feet hurt they would not get that reaction from me. After sitting for a little while at lunch and taking some painkillers I started feeling better though. The other was when it got cool enough at night that my fingers and knees started to get stiff and sore while I was watching the MSEP. We decided to skip Wishes because I just wasn't feeling it anymore. But out of a week to only have the fibro rear it's ugly head twice is extremely unusual for me.

I'm not sure if it's that Disney magic (which for me really just translates to "YAY DISNEY! I'm not focusing on pain stuff!") or if maybe something I'm doing at home (most likely sitting on the couch/at my desk) is causing me more harm than good, or if it's something completely different. But now that I'm home I'm confused.

And I'm probably thinking way too hard on this.

Oh and my trip was fantastic even with the pain, be it fibro or foot related. We've definitely decided that I need to re-evaluate my shoe choices before next year's trip though. I think even my blisters got blisters this time around!

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[EDuke98080]

I give - Day 1 operation couch ~ failed!!!

On the other side, 4 loads of wash complete! (well actually the whites are in the dryer, towels in the washer - most likely will have DH finish them later since I am a bit sore now)

I just don't see how you can do it, my body knows it has to be here, my mind keeps taking over. I am disappointed in myself. I think the steriods are masking the pain right now, but I only have 2 days left, then I am sure it will go back to the not so pleasant feelings.

Any words of wisdom?

Oh and this would have to be post 5,000. Whining and complaining... I almost want to delete it and put in something happy and fancy-free, but that would again, just be masking the lie some more!! HELP!!! Diane.[/QUOTE

I am not sure about wisdom but here is what I do. I tend to push myself to do way more than I should. Then I suffer. What I have learned is that sometimes if I push myself I have to know that on the other side I will have to give back to myself for it. So I will sleep untill 12 and just have that be the plan for a few days. Get up, do a couple of things that HAVE to get done, and then rest. If I do one thing, then I say, I did one thing today and that is good. If I rest and that is what I need to do then I say I rested and that is good. Sometimes I feel guilty but I have realized that if I push too hard, I crash hard and then I am of no use to anybody (and miserable besides). I think the key is to "listen" to my pain and know that it is saying "time to rest" and know that the time I take to rest is an investment in a good tomorrow.

Don't be too hard on yourself, tell your mind that it is ok for your body to need to rest. If you have to do something, do something mental, read, type a list on the computer etc.... you can then say I did..... and it's my accomplishment for today and it's good.

I try to think that this is what I have been dealt and it is what it is. I have to do things in a different way - sleep, rest, work etc. but it's ok. If this is what I need to do to be the best me that I can given the circumstances then it's ok if I have to lay on the couch today and tomorrow if I need to so I feel better tomorrow.

I hope you can quiet your mind and renew your body so you feel better soon!

~Erika

 

[Tinker'n'Fun]

 

[onnawufei]

I've felt so much better for the past few days after coming back from WDW, I think we should just move there. But of course I know that as I get back into the swing of things with work and whatnot, some of the stress will creep back in. Such is life.

Yesterday in a supremely ditzy move I took both my daily doses of Savella in the morning instead of taking one Savella and a vitamin. Yeeeaaah, go me. Thankfully the only side effect I got from "missing" last night's dose was that I'm feeling a bit spacey this morning. I can handle that, it's not like I have anything important to do or anything. (Note that I'm typing this from work. )

I have to go to the doctor today, so I suspect I'll either be starting Lyrica today or tomorrow. We'll see how that helps!

Tinker'n'Fun good luck with the Cymbalta! Hopefully it gives you all of the good helpful stuff it gave me without the side effects.

 

[Tinker'n'Fun]

 

[EDuke98080]

It's been a long week. Today was my first day off the couch and actually doing stuff. I did the grocery shopping. Took me 3 hours, but it got done. I am definetely sore, and very tired.

My steriods are done, thus the pain in my ribs is back. I will just have to let it work itself out. Hopefully not a full year like last time. I am on the Cymbalta and see no relief in the pain yet, but only have a few small side effects so we will continue on it for at least the next week and think about going to full strength.

Hope everyone if pain and fancy free.., miss you all!!

Hi Tink! Hang in there! Hope you see some relief soon.

 

[tiggspring]

If I rest and that is what I need to do then I say I rested and that is good. Sometimes I feel guilty but I have realized that if I push too hard, I crash hard and then I am of no use to anybody (and miserable besides). I think the key is to "listen" to my pain and know that it is saying "time to rest" and know that the time I take to rest is an investment in a good tomorrow.

Don't be too hard on yourself, tell your mind that it is ok for your body to need to rest. If you have to do something, do something mental, read, type a list on the computer etc.... you can then say I did..... and it's my accomplishment for today and it's good.

I try to think that this is what I have been dealt and it is what it is. I have to do things in a different way - sleep, rest, work etc. but it's ok. If this is what I need to do to be the best me that I can given the circumstances then it's ok if I have to lay on the couch today and tomorrow if I need to so I feel better tomorrow.

I hope you can quiet your mind and renew your body so you feel better soon!

~Erika[/QUOTE]

Hi Erika hope all is going well. I totally agree with what you said. I too have had to look at my rest time as an investment for tomorrow. I look at it as energy dollars. Some days I have $5 in my "pocket some days 10 some days $1

Tink this is how I try to look at it.

Every morning i get up and kind of make a mental assesment of where my body is at because as you know every day is a new adventure and just hitting the floor with my feet is an accomplishement. I kind of assess how many "dollars" I have. Then I make a mental rundown of what I absolutely have to do which includes only two things 1. activities for the kids ie soccer and 2. meals and do I have something quick in the freezer or can I buy something that day. Then I add in what I would like to do which is basicly everything else and see if I have enough "dollars". I have had to look at my health as my "job" so that means kids help with the laundry dishes etc. I cannot do it all alone even though I am home my job is to make sure that I can be at activites and keep them fed anything else is gravy. My husband has made it clear her wants me to be Wife and Mom first maid and cook last So I break down chores like laundry as to what I can do ie sort, treat and wash and what I shouldnt do because it uses up too much energy ie folding and I delegate that out to my kids. my youngest DD now six picks up things on the floor, sorts shoes and hand vacs the stairs. DS9 empties dishwasher, folds his own laundry since DD balks at doing his which seems fair, he vaccums etc. DD11 folds laundry which is a big job and sometimes dose other odd jobs I do my best not to feel guilty about this. They need chores it is part of life. My kids have friends that own horses and they ar mucking the stalls at 5am so I use that to keep it in perspective. My DH1 mother did everthing for home and when he got to college he couldnt turn on the stove or use a wahsing machine!

Dont get me wrong my house is still a mess. There are times that it is hard to find the floor in my kids rooms and piles of stuff to sort throughout the house becase it also takes energy to get my kids to do there chores energy I often do not have. I have to let it go because if I spend $5 on a $1 day then I'm in debt and I can only do that for so long. I guess it helps that I had the worst of my disease right from the begining. I know that if I go into debt then I WILL go back to the days of crawling to use the bathroom and needing my husband to stand outside my shower because I couldnt stand up long enough to take one without assistanceI will not risk going back to that so I stay in bed or on the couch even if a full weeks worth of laundry is piled in my laundry room. I have too its just the way it is.

My husband uses a sports analogy. If you are playing vollyball and the ball hits the floor whose fault is it? In vollyball everyone is responsible for covering each others back so if it hits the floor its the teams faul. So he tells the kids a family is supposed to be a team. Mom is not the only one on the team so if the house is a mess its everyones fault. If a meal needs to be made than those old enough to make a meal even if its just a sandwhich should do so if a team mate is down.

Maybe thinking of yourself as part of a team not a one woman show will help you let go. I think that since you havent been in this crisis too long you may be able to get back on your feet and be much more normal than you are right now. That being said the longer it takes for you to really rest long term the less likely that is to happen. Just the nature of this FMS beast.

Sending pain free vibes and pixie dust to all

 

[tiggspring]

I got back from my trip Saturday and am sort of... I don't know. I guess I'm a little confused by a few things.

First off I obviously survived my trip. In the end my biggest issue wasn't my fibro, it was actually the fact that I was getting some insane blisters on my feet. My fibro seemed to play a very small part in my pain, which is why I'm confused.

At home I'm sitting on the couch or sitting at my desk at work, sometimes walking around taking pictures and quite often feeling miserable. Loads of pain in my back, neck, shoulders, etc.

At Disney I was on my feet constantly, doing the commando style touring even though we said we weren't going to this year (we relaxed a bit but yeah, not much) and I wasn't miserable. I had a little bit of pain unrelated to my feet, but there were only two times it was notable. One day at Animal Kingdom I was in so much pain I started crying while I was waiting for food. No matter how badly my feet hurt they would not get that reaction from me. After sitting for a little while at lunch and taking some painkillers I started feeling better though. The other was when it got cool enough at night that my fingers and knees started to get stiff and sore while I was watching the MSEP. We decided to skip Wishes because I just wasn't feeling it anymore. But out of a week to only have the fibro rear it's ugly head twice is extremely unusual for me.

I'm not sure if it's that Disney magic (which for me really just translates to "YAY DISNEY! I'm not focusing on pain stuff!") or if maybe something I'm doing at home (most likely sitting on the couch/at my desk) is causing me more harm than good, or if it's something completely different. But now that I'm home I'm confused.

And I'm probably thinking way too hard on this.

Oh and my trip was fantastic even with the pain, be it fibro or foot related. We've definitely decided that I need to re-evaluate my shoe choices before next year's trip though. I think even my blisters got blisters this time around!

I did much better at WDW and I attribute it to a couple of factors. 1 no stress!!!! We plan it out so I have absolutely nothing to worry about meals all paid, rides all planed, no buses or plans to worry about "catching" etc 2. good weather since we go in May. Not too hot or cold. 3. planning our touring means I rarely walk or stand for more than five minutes and sit for no more than 30 unless at a meal or planned break so I dont get still or tired doing any one thing. You might do Camando but if each type of activite is limited to 10 minutes or less your body doesnt get overwhelmed by it as much. At least mine doesnt. I think this is the biggest factor. Finally I can take care of myself ie take an AM and Pm shower and not do anything that stresses my body like house work. If only my daily life could be paced like this I might get something done!

Glad you had a good trip!

 

[onnawufei]

Well the feel good Disney vibes did finally wear off, but for the first time in probably at least a year I went a full week without taking any painkillers.

In theory I might be starting my Lyrica today. I got a prescription for it and I'll be taking it along with my Savella at first, but my insurance required prior authorization so I haven't started it yet. I also found out that it's a controlled substance, and the doctor has no idea why. Weeeeiiiiiird.

Joining in on the pain free vibes for everyone!

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[funnygarcia]

Just passing thru..
I have "issues" that I suspect may be from fibro or lupus but not a firm diagnosis until I can get medical insurance.

I read the post by tiggspring about judging her day by how many "dollars" she has to get tasks accomplished or to just be able to function in a day.
It brought this to mind, thought I would share as it is a great story to print out and give to family and friends who don't "get it".

The Spoon Theory
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

Hope everyone is having a good day and a good restful night.

 

[EDuke98080]

Just passing thru..
I have "issues" that I suspect may be from fibro or lupus but not a firm diagnosis until I can get medical insurance.

I read the post by tiggspring about judging her day by how many "dollars" she has to get tasks accomplished or to just be able to function in a day.
It brought this to mind, thought I would share as it is a great story to print out and give to family and friends who don't "get it".

The Spoon Theory
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

Hope everyone is having a good day and a good restful night.

Thank you for sharing that.

 

[Tinker'n'Fun]

 

[tiggspring]

Tigg, call me lazy but I couldn't find the cranberry recipe. Could you repost it? Sorry, I did 20 pages, but then I just lost it...

It was actually Sassy water that I posted on Dis dont know which one of us got our wires crossed on that one Cran water is just 1 part organic sugar free, 100% cranberry juice (hard to find without apple juice mixed in but very important for carb reaction) to 3 parts water. I buy it at my local grocery store but it is very expensive like $6 per 32oz On the other hand it lasts a long time. You can increase or decrease amounts as you like. You can also add 1 to 2 tbl of ground flax seed to this in the am and pm its called long life coctail. Its gritty but it is wonderful for keeping you regular and has the benifit of all those omega three fatty acids!

Cran water is used in the detox diet I used to try and they also reccomend a cup of hot water with lemon upon waking along with cranwater with flax. A great routine to get into but with three young kids I'm lucky to go to the bathroom in the first hour or so that im up. No way to relax with lemon water , long life coctail and a cooked protine breakfast. You can guess why that diet failed

Sassy water is used on the flat belly diet and is also wonderful for feeling clean and less bloated. Works really well when I go low carb.

Here is the recipie for Sassy water :
2 liters of H2O
1 tea fresh grated ginger root
1 medium cucumber peeled and thinly sliced 1 med lemon thinly sliced
12 mint leaves
I tend to put all the ingredients in a gallon of water instead of 2 quarts and let it steep longer. I use mint tea in place of the fresh since it can be hard to find fresh in good condition. To save money and energy I keep adding water until it loses its flavor usually another half to a gallon of H2.

Here to no water retention!

 

[tiggspring]

Just passing thru..
I have "issues" that I suspect may be from fibro or lupus but not a firm diagnosis until I can get medical insurance.

I read the post by tiggspring about judging her day by how many "dollars" she has to get tasks accomplished or to just be able to function in a day.
It brought this to mind, thought I would share as it is a great story to print out and give to family and friends who don't "get it".

The Spoon Theory
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

Hope everyone is having a good day and a good restful night.

FunnyGarcia

I dont remember seeing you before. If I have well at least you know I'm welcoming

Thank you so much for posting that link!! I plan on sending it to my family and friends so when they try to explain my illness they can e-mail a copy as an explination.Reading that story on my BB brought a tear to my eyes and I couldnt wait to get home on my computer so I could post a reply!

warning this is a little long becasue it triggered some memories I wanted to share.

Counting spoons or money etc that really is what it is every minute of the day for all of us isnt it? No matter if you have a mild case or full blown episode you cant get away from counting the spoons or dollars in my case. It remeinded me of the day I fear most going back to. Why I try to be so vigilent of my rest time now.

DH and I were spending our 2nd Thanksgiving together and had been married only a year and a half he was 29 I was 27 and I had been diagnosed that Jan. I was in a very bad way. Had to have a surgery due to complications from the toxoplasmosis treaments, had seen lots of drs and tried about 10 meds which were playing havoc on me. Had er visits to rule out appedicitous (sp?) and heart attacks..sleeping 16-20 hrs a day, the works.

DH knew a family Thanksgiving was out so he cooked me an entire meal all by himself. He doesnt watch football so this was his day and his DM spent it alone too since she was disabled with COPD. I tried and tried to get out of bed throughout the day but was in a complete stupor. Finally about 7pm I dragged myself out of bed and all I remember was the bright lights of the kitchen and seeing my DH face through a tunnel of fog. I kept thinking "you have too eat for him" but couldnt pull myself out of that tunnel vision to stay awake. I think I was up and awake about 45min that day

When I want to overdue I think of those days and it sometimes keeps me in check. sometimes I'm still too stubborn for my own good. One thing is for sure my DH was young, didnt know if I would live, let alone have children and he still stuck by me those first two years. I can still see the terror in his eyes when I have a really bad day worrying that I will go back there.

So for those of you having a rough time I'm proof that you can get more of your life back with the creative accounting. We might never get back to work or have a clean house but the time we are really "present" with our families is a giant gift with this disease and those like it.

Thanks for giving me a place to share my ups and downs it means the world to me

Sending pain free vibes and Pixie dust to all

 

[Happy Dreams1]

My mom and sister have fibromyalgia.

 

[tiggspring]

My mom and sister have fibromyalgia.

I know how hard this is on families. I often tell my DH he has it worse. He can only go by what I tell him on bad days. I know if I'm really close to the edge but he can only watch and take the emotional brunt of my pain, frustration, fatigue and carry the load for two of us..Not easy for either side.