Fibromyalgia Thread

[weluvdizne]

Hi, I just found this thread, and read the last 2 pages. It feels like home. I am in my early 30's and have had CFS and FM for the last 15-16 years. I had it pretty much under control, until I got pregnant in February this year. This pregnancy has been so hard. It's like it totally relapsed my CFS and FM. I feel terrible, and it's so hard to keep up with my 2 kids I already have. I am slipping on housework, and it's making me crazy. I did not have this problem with the other two pregnancies.
I don't know what to do to feel better. I am only at 20 weeks, so, I am only 1/2 way through this. My dr. said that he can't give me any meds since I am pregnant. Thankfully, my family has been supportive and understanding, and when I have a decent day, I push myself to give them all I can. Unfortunately, those days are very far and few between. I really pray that it goes back into remission after the baby is born, because if not, I don't know what I'm going to do!

I really appreciate you listening. You seem like a wonderful group!

 

[Tinker'n'Fun]

 

[melmathis]

i was pregnant with fibro. i was 35 when i had my daughter 5 years ago. was tired, but loved every minute. then only thing to remember is, when you are tired (i know b/c of the fatigue) dont take it out on your kids or husband. i know it is hard to not be irritable with them, just dont be, b/c sometimes you can say things you wouldnt have said if you were not tired. dont worry about the house work. let it pile up then call clean house lol (just kidding, that just happens to be my fav show at the moment)

 

[brighteyes]

Mel - Welcome!!!!! This is a place to vent, ask questions and just share. You're right about the housework. I do it when I can and when I can't I worry about it, but still don't push myself. But when I feel good, usually do too much. But that doesn't happen very often at all lately

Weluvdizne - Welcome too!! YAY more people Kudos to you for dealing with Fibro and being pregnant!! Honestly a lot of these ladies are on no meds and I just tried that for about a month and cried like a baby for most of that time. Don't know how you all do it, I sure couldn't make it. I really hope you feel better. I have a natural remedy book for Fibro that talks about diet, I will try to find it and post some foods that are supposed to be helpful. I know cherries are supposed to help with Fibro. At least I read that. All I can suggest is a heating pad?! My child was older too when Fibro hit so I don't know how I would have managed on my own with him with Fibro. Although looking back I probably had symptoms of CFS back then but just thought I was lazy or depressed or really tired alot from being a single parent. (That's what the dr said)

Tink -- I am so sorry you are in so much pain. I hope you are feeling better??? Doncha just hate it when friends act soo imature? I mean who cares if you friended her friend? Isn't that up to the person you friend requested? I mean even if you didn't, but if you did, does it really matter?

I really hope you are feeling better.

I just want to say to EVERYONE -- a BIG THANK YOU for letting me vent about such a personal issue. Sometimes it is easier to strangers. Yet you are not strangers because you understand. But you know what I mean. I am truly happier, lighter, and feel like a NEW PERSON Now jsut to get rid of this dammned FIBRO and lose some weight and find me a cute MAN he he

 

[brighteyes]

Hi, again! I was diagnosed a year ago after a very stressful work situation caused so many flares the drs were worried it was something worse. I was laid off (probably for the best), rested for most of the past year (taking care of DH/DS is not always restful, but). I had applied for quite a few jobs this past month, but was worried about trying to go back to work f/t. Just found out that I was hired for a p/t 20 hr a wk job in my field, at a technical college, from 10a-2p M-F, which should be good, since I can sleep in on bad days, and still be home in time to make supper/ferry DS around. I'm just so happy to be able to *try* working again! This thread has been very supportive for me, even as a lurker...
Thanks!
Terri

Hi Yoopermom--- Hi! Feel free to say hi or just lurk or just talk. Congrats on the job! It sounds like a good schedule for you if you have bad days. Let us know how it goes. Good luck!

 

[brighteyes]

Sandy Welcome

I have been to Disney the past two years with younger kids and found that major amounts of planning helped me alot.

I would highly recomend Ridmax. Not only does it help with the lines etc ( waited on average 5 minutes in May) but with younger kids it keeps them from being overwhelmed because everyone knows what they are doing next and that they are doing it to stay out of lines. Even my 4 year old got that! It will also help your husband pace himself. I find if I know where I'm going and what I'm doing I budget my energy much better than when there is any kind of chaos or confusion. I highy recommend sectioning off the parks so on one day do Fantacy land and tomorrow land the next do adventure and frountireland. Keep the resteraunts in the same area and use your smart phone or printouts of menus to decide what you are eating before you get into a resteraunt. That way the kids dont meltdown waiting for food and the mealtime chaos is limited. We found that either we need to go back for naps or eat a large sitdown meal for lunch or plan on two longer attractions in a row ie Mikey philharmagic and monsters laugh factory or carosel of progress so that I was sitting in air conditioning for a longer break in the afternoon. If you need any planning ideas let me know. I generally felt better on both trips due to low stress, less decision making and a pace that was 5-10 minutes walking 5-10 minutes standing and 5-10 minutes sitting. this seemed to keep me from getting as tired, stiff or in pain as at home.Plus no responsibilities maids and waitstaff...if I could only have them at home!!! its amazing how much stress just trying to make decisions or handling the small unexpected things puts on my brain! Hard to believe I was working on my masters when I got sick now trying to decide what to make for dinner is taxing...but so it goes.

I remember how hard the first few years were. When your family get in thier groove you will find that you can make the most of the time and energy that your DH has. Fibro is alot like childbirth the more you fight it the more it hurts. It takes time to learn how to ride out the bad days and sieze the good. I know the past year everone here has been a huge help to me in doing both! Thanks guys

Sorry for the spelling my heads not working to well today

Sorry, just catching up here! What's Ridmax? I feel so clueless!!

 

[Tinker'n'Fun]

 

[brighteyes]

RideMax is a computer software program designed to help you create custom wait-time-reducing plans for Walt Disney World and Disneyland.

Why waste your valuable time in the park with your head buried in the park map, trying to decide where you will go next? RideMax allows you to specify the date of your visit and the attractions you wish to ride, then uses a sophisticated scheduling algorithm to help you map out your "game plan" in advance!


I HAVE A QUESTION: Don't want to post in the open forum yet, for fear of negative answers, so hoping someone here can help.

I am still stubborn and will not rent an ECV or get a wheelchair. BUT, (isn't there always a but) getting out of the park to the busses at the end of the night is extremely difficult for me. Can you stop on the way out and borrow a chair for the travel from the exit to the bus, then have a CM bring it back??

I am usually in tears by the end of the night and the wait in line is difficult. I spend most of it sitting on the ground and some nights DH and DS have to pretty much carry me onto the bus. Same when I get off to go to the room. Could they go into the lobby get one, bring me to the room at the end of the night and return it right away. If you know the answer, I would be forever grateful. Diane.

I totally understand. I have had this question before too. The walk from the entrance to the park is extremely long, even upon entering. At least in the parks there are benches to sit on while you rest between reaching new rides.

I would like to know the answer to this as well.

 

[EDuke98080]

One night at the MK my daughter had a really bad Celiac reaction before she was diagnosed. We asked for help getting her out of the park, she couldn't walk at that point, and my Mom and I had to walk to the front of the Park to get a wheelchair and walk it back to her. My DH couldn't carry her at that point (she was 20 and sick) because we we back by Liberty Tree Tavern and it was just too far. We asked every CM we could and noone could help us. It was very frustrating and upsetting but noone was willing to go the extra mile to help us. Maybe a call to Guest relations could tell us what the policy is. I am sure there are many who end up in bad shape after a long day. I remember a few nites not being able to walk and being in tears too. I wonder if we can contact someone and help them come up with a service for delivering wheelchairs to needy folks at the end of the day....

 

[Tinker'n'Fun]

 

[EDuke98080]

Maybe they should have the wheel chair rental place staffed and have the CMs know that if anyone asks for help getting out they can radio the wheelchair place and have "runners" bring one to the guest in need. Or maybe they should do it through first aid. Doesn't seem like too much if they had a few CMs assigned to that task at each park each evening for maybe the last hour before closing and then maybe a half hour after. There were no CMs who knew where to call or how to get us help that night. It was rough but it was also very late, and to be fair, the over the years Disney has done amazing at guest services in our experience. Unfortunatly that night we ate at Tony's Town Square and DD had a big plate of pasta. We had no idea why she got so violently ill and it took another 5 months for her Docs to diagnose the problem. The cruise we went on that week was no picnic either. She was sea sick and Celiac sick! Thanks goodness things are better now!

PS We are getting a puppy tomorrow!

 

[Tinker'n'Fun]

 

[EDuke98080]

Congrats on the new family member. I can hardly take care of myself, so no new members in this household!

Yes, we are insane!

 

[brighteyes]

EDuke,

That is horrible that there was no one that could help you. I know they have a first aid station, but still if DD was that bad, no one could use their radio to have a wheelchair brought to her??

I know it doesn't seem like too much to ask for us Disers to have a wheelchair brought back by a CM at the end of the night, but I have a feeling there would be a LOT more than a few people using this service if they saw it available.

Congrats on the puppy! I have wanted one for soo long but held off then my kitty was attacked. He is an indoor kitty now and are trying to decide if we should get him a "kitty" friend or a "puppy" friend. DS doesn't want to walk a dog, so he says cat. lol

Good luck and post pics. I just love puppies.

 

[EDuke98080]

EDuke,

That is horrible that there was no one that could help you. I know they have a first aid station, but still if DD was that bad, no one could use their radio to have a wheelchair brought to her??

I know it doesn't seem like too much to ask for us Disers to have a wheelchair brought back by a CM at the end of the night, but I have a feeling there would be a LOT more than a few people using this service if they saw it available.

Congrats on the puppy! I have wanted one for soo long but held off then my kitty was attacked. He is an indoor kitty now and are trying to decide if we should get him a "kitty" friend or a "puppy" friend. DS doesn't want to walk a dog, so he says cat. lol

Good luck and post pics. I just love puppies.

You are probably right on the wheelchair thing with too many people needing it. My Mom and I managed to get her one, it took a awhile for us to go and get it and get back but it worked out in the end. I am so sorry your kitty was attacked, that is horrible! My dog is what makes me get out and walk a little everyday so I look at it as an investment in health?! Will post pics of new PUP if I can figure out how otherwise will post a link to my FB page. I love all furbabies!

 

[weluvdizne]

Thanks for the warm welcome. It's nice to be surrounded by people who understand when I say, I just don't feel good today. My two kids are great about it and very understanding. They are also very helpful around the house. I am so lucky. Also, my dh is now working 2 full time jobs, so I don't have to work. He's awesome. I really am blessed. I try real hard to not ask him to do too much around the house since he works so much, but sometimes, I just need a little help and he always helps when asked. Nobody is upset about the house work slipping, but me. I'm hardest on me. I also have been known to push myself to do everything on days when I feel decent. I feel I need to make it up to everyone for the days when I feel like I can't get out of bed. Then, of course, I pay for it the next xxx amount of days it takes me to recoup.

Anyway, here's what's keeping me going today: I have my ultra sound tomorrow. I'm at 21 weeks, so more than 1/2 way there. I've been feeling the baby move for the last 2 weeks, so I am finally feeling like I feel so sick for a reason. Problem is, I have so much left to do before the baby comes! DD and I were out shopping earlier today, and I let her pick out the outfit the baby will wear home from the hospital if it's a girl. I will take DS out shopping some other time to pick out the outfit incase it's a boy. We are anxious to find out, but want to wait until the baby is born. It's hard, but since this is the last one, we want to keep it a surprise.

I hope everyone had a good holiday weekend and is feeling good.

 

[brighteyes]

Thanks for the warm welcome. It's nice to be surrounded by people who understand when I say, I just don't feel good today. My two kids are great about it and very understanding. They are also very helpful around the house. I am so lucky. Also, my dh is now working 2 full time jobs, so I don't have to work. He's awesome. I really am blessed. I try real hard to not ask him to do too much around the house since he works so much, but sometimes, I just need a little help and he always helps when asked. Nobody is upset about the house work slipping, but me. I'm hardest on me. I also have been known to push myself to do everything on days when I feel decent. I feel I need to make it up to everyone for the days when I feel like I can't get out of bed. Then, of course, I pay for it the next xxx amount of days it takes me to recoup.

Anyway, here's what's keeping me going today: I have my ultra sound tomorrow. I'm at 21 weeks, so more than 1/2 way there. I've been feeling the baby move for the last 2 weeks, so I am finally feeling like I feel so sick for a reason. Problem is, I have so much left to do before the baby comes! DD and I were out shopping earlier today, and I let her pick out the outfit the baby will wear home from the hospital if it's a girl. I will take DS out shopping some other time to pick out the outfit incase it's a boy. We are anxious to find out, but want to wait until the baby is born. It's hard, but since this is the last one, we want to keep it a surprise.

I hope everyone had a good holiday weekend and is feeling good.

Well ESPECIALLY since you are pregnant, I would take it easy and don't push yourself when you are feeling good. Just do a little bit at a time when you are feeling good. And when you are not, DON'T. I am the same way and try not to do too much when I start but sometimes I get VERY carried away.

Congrats on the baby again and just take care of his/her mommy

You are blessed but rest up cause you will need it soon! Tell us how the US goes tomorrow.

 

[Tinker'n'Fun]

 

[brighteyes]

Thanks for the warm welcome. It's nice to be surrounded by people who understand when I say, I just don't feel good today. My two kids are great about it and very understanding. They are also very helpful around the house. I am so lucky. Also, my dh is now working 2 full time jobs, so I don't have to work. He's awesome. I really am blessed. I try real hard to not ask him to do too much around the house since he works so much, but sometimes, I just need a little help and he always helps when asked. Nobody is upset about the house work slipping, but me. I'm hardest on me. I also have been known to push myself to do everything on days when I feel decent. I feel I need to make it up to everyone for the days when I feel like I can't get out of bed. Then, of course, I pay for it the next xxx amount of days it takes me to recoup.

Anyway, here's what's keeping me going today: I have my ultra sound tomorrow. I'm at 21 weeks, so more than 1/2 way there. I've been feeling the baby move for the last 2 weeks, so I am finally feeling like I feel so sick for a reason. Problem is, I have so much left to do before the baby comes! DD and I were out shopping earlier today, and I let her pick out the outfit the baby will wear home from the hospital if it's a girl. I will take DS out shopping some other time to pick out the outfit incase it's a boy. We are anxious to find out, but want to wait until the baby is born. It's hard, but since this is the last one, we want to keep it a surprise.

I hope everyone had a good holiday weekend and is feeling good.

Thinking of you and hoping all is well with mommy and baby

 

[Tinker'n'Fun]