coming to terms with fibro

Hi everyone!  Happy Valentine's Day!  I am a new member, posted a few weeks ago right before and after I got my fibro diagnosis.  I've been lurking since then but feel like I need some peer support.  I'm already having a bad day and it is only 8:10 a.m.!

After I got diagnosed (and even before) I kept thinking, "Am I making this up, am I exaggerating how I feel, maybe this is how you are supposed to feel when you are thirty-eight and have two little boys, maybe if I excercised..."  Then when the Gabatein (sp?) got in my system I finally felt like I was sleeping at night.  I guess I didn't realize that you don't have to wake up every morning feeling like you didn't sleep.  My older son Charlie, he's four years-old, has autism and has never been a good sleeper and I guess alll of that broken sleep definitely wore my body down.  So I started feeling better, and then really questioned myself about it all...thinking I just needed restfull sleep.  I was still achy in my hands, arms and feet...but not all over. 

So fast forward to last night.  My son Charlie was at the doctor on Tuesday and they said he had the beginning of pnuemonia.  So he started an antibiotic and was starting to feel better yesterday.  As I was getting him into bed last night, about 8:30 p.m., he started screaming in pain that his ear hurt.  Charlie never complains about pain, he is the ear infection king, so I knew this wasn't good.  After about twenty minutes of it not getting any better we knew he had to go to the ER.  I took him while my husband stayed home with our sleeping two-year old, Miles.  So obviously Charlie wanted to be held the entire time...to the car, into the hospital, the whole time in the ER, etc.  He weighs thirty-six pounds, plus I had to really 'restrain' him while he was examined.  Turns out he had a bad ear infection (I don't get how seeing he has been on an antibiotic for four days). They gave him some Tylenol with Codeine (sp?) which totally knocked him out and he is feeling better this morning.

My arms hurt so bad on the way home from the hospital I thought they were going to fall off.  My husband had to come get Charlie out of the car and carry him upstairs, I could not lift him.  Falling asleep was a nightmare, my arms and hands hurt so bad.  Now this morning I feel like I've been hit by a Mack truck.  All I can think about is going back to bed, can't because my husband is out.  Ibuprofen is doing nothing. 

So I am finally coming to terms with the fact that I have Fibromyalgia and am feeling quite down about it.  I kept thinking that I was stronger than this.  I kept thinking that a positive attitude would work.  So how do you all deal with the fact that you have chronic pain and that you have to modify your life?  I've read a lot of posts touching on these things but can you share your acceptance stories, tips for prevention of flares (last night my husband could have taken Charlie but we knew I'd be the one that he wanted for comfort), suggestions for getting through the flares...anything else you think might help a newbie.

Thanks so much for listening to my long post,

Jennifer

asthma, depression/anxiety, GERD/EE, fibromyalgia

Flovent, Effexor, Xanax as needed, Ibuprofen, Gabatein(sp?)

Aww, Jennifer, sweetie. I feel your pain! I, too, am the mother of young kids (i have 3-a 15 year old, a 6 year old, and a 4 year old) and I know how hard it is to keep a family and a house going when you are struggling with fibro. (I can't imagine how doubly hard it must be for you to have fibro and a child with Autism!) I've been struggling with this dd for about 8 years now, officially diagnosed for 4, and I'm still coming to terms with it. To me, fibro is like an onion (you have little ones, so am I assuming correctly that you've seen Shrek? lol). You get to a layer and you think-oh, this is it. But then you find another layer..and another..and another and on and on. I don't know if you ever get to the "bottom" of it all. I have new symptoms crop up, disappear, come back, go away for ages, show back up out of nowhere. I can't tell whether i'm coming or going sometimes! I have days when I feel pretty great and I think-hey! maybe I've found that magic bullet! and then WHAM out of nowhere I will slip into a flare. It is so so frustrating and I don't blame you in the least for feeling down! I have my faire share of down days, too.

I too really struggled with feeling like all I had to do was just find that one "thing" that would fix me. It hasn't helped that people around me have been so willing to give me advice, lol, (I started a thread about this, actually) but I am slowly starting to realize that no, there isn't any magic wand that can be waved to make it all go away. There are helpful things I can do, absolutely. But no "end all be all". I just try to take care of myself day to day and hope for the best. Please, PLEASE don't beat yourself up and think this is all your fault! I don't know what causes this dd, but I DO know there is nothing any of us did to make it happen in us-it just did. And don't read all that garbage about how it's not real, or it's just an emotional issue, or because of a lack of exercise, or because you at too many twinkies in your teens or whatever. Even though they haven't found a definitive cause or a cure yet, this is a REAL disease with REAL pain!! Anyone who says otherwise is just talking out of their behinds. I think fibro is a lot like depression used to be-dr.'s and the public at large used to blame depressed people like it was all their fault and pooh pa them, but now we know it's a chemical imbalance in the brain and NOT something a person can just "get over"! And just think-a long time ago they used to think that schizophrenia was caused by demons! And it used to be thought that you could get VD from toilet seats! Or AIDS from hugging someone! Point is, Dr.'s learn new things all the time, and I firmly believe that one day they will figure out what is going on in our Fibro bodies! (As a side note, though, you would think that with all that learning Dr.'s have done over the years, they'd stop being so smug about things! The human body is a mystery, and I'm sorry, but there isn't a single person on the planet who has it all figured out yet!)

Anyway...sorry for that little mini rant. lol

What I have had to do is learn my own limits. Like Marlee, I can't drive for long distances-my arms start to go numb! I also have a hard time with sweeping and mopping and vacuuming because it turns my hands into claws. I can't walk for extended periods of time, so no more mall for me. (not that I was ever a big mall person, but still...) On "special" days-holidays, birthdays, family outings and so on-I have to be very conscious of how I am using my energy. If I know I'm going to be out of the house all day for something or if I know I am going to have people over all day for a dinner or whatever, I will be extra kind and gentle with myself the day before and the day after. I've had to completely restructure my life. I have to cut up my household work into smaller chores and take lots of breaks. Saturday is deep cleaning day around here, and everyone has a chore or two. My daughter cleans the bathroom and takes out the garbage, I clean the kitchen, my hubby sweeps, mops, and vacuums, and my boys do the dusting and help take the recycling out to the garage. The rest of the week, I do a general pick up every day and also use Clorox disposable wipes in my bathroom and kitchen just to keep them from being too gross. These things have really been a God send for me-just a quick swipe, then a once over with a paper towel and voila! The rooms are passable once again. I also struggled with keeping up with the laundry and started having trouble lugging laundry baskets from room to room-fortunately, my house is all one level, so I don't have to go up and down stairs, but still dragging baskets from our room and our kids' rooms into our laundry room was doing awful things to my shoulders and arms, so I went out and bought a 3 section wheeled laundry cart. That way all dirty clothes can just go right into the hamper in the laundry room, and if it ever gets in the way, I can just wheel it out of the way. I go grocery shopping every two weeks just to get it all done in one fell swoop-those days wear me out terribly, but again I know to take care of myself before and after. My family eats quick and easy meals during the week and then my hubby cooks on the weekends. I've had to sit everybody down around here and explain my limitations to them and ask for their help. That was really hard for me because I am a do it myself kind of gal, but it had to be done because I can no longer do everything myself. Fortunately, they have all been very understanding and helpful on that. I am also in college, and have switched to all online classes, which gives me more flexibilty. Basically I've learned (the hard way, but I have learned!) that you just have to put yourself first and take gentle care, otherwise you won't be any good to anyone else. Also, sometimes you just have to say no to certain things so that you can have the energy you need for other things, you know? It sucks that we have to ration ourselves like this, but we really do.

As for coming to terms with things, like I said I still work on it. Sometimes I do ok-my attitude is good and I just keep on keeping on-but sometimes I'm just like-waaaaaahhhh!!! This isn't fair! I am only 35 years old, I shouldn't feel like this! But, it is what it is. Just one day at a time, you know? That's all we can do.

I don't really have any tips on how to prevent a flare except to just be kind and gentle with yourself. Don't do too much in one day and ask for help when you need it. Also, gentle exercise is helpful, but it's a fine line between too much and not enough. After much trial and error, I've found that the best thing for my body is 30 minutes on the treadmill 3x a week and 30 minutes of yoga 3x a week. I know this isn't the ideal exercise schedule, but it keeps me from getting too stiff and it keeps me from getting worn out. I also spend a lot of time on the computer with college, so I make sure to get up and walk around and do some light strethcing every hour or so. This really does help. It doesn't make the pain go away, but it keeps it from becoming unbearable! I have also cut out caffeine and sugar from my diet and that has helped some, as has taken supplements-I take Malic Acid and Magnesium, Calcium, Vitamin C, a regular multi with iron, a B-complex, and then extra B-12 and this also seems to help a little. I don't take any medications for my fibro (in part because I don't have insurance and in part because I am super sensitive to drugs), but I will take Motrin 600 on super bad days. It doesn't completely cut the pain, but it does take the edge off.

Also, during flares I rely very heavily on warm baths, comfy clothes, my super soft blanket, and my bed buddy. Some days all I can do is rest. My hubby also got me a portable massage pad and that feels really good. We also went out and bought a 2 inch foam mattress topper and that has helped tremendously with my sleep. I still don't sleep a lot (I average 6-7 hours a night), but I do feel more rested when I wake up.

Oh, and some kid tips. My older two are in school all day, so that really helps, but my youngest only has half day preschool, so on the days when I'm feeling really awful, he and I just hang out on the couch. I will gather up toys and snacks and games books and movies so that I have things to do with him close by. I used to be a super active parent and had a hard time letting that go, but I've realized that as long as I am loving and kind and talkative with my kids, they will be ok. Also, one of the great people here recommended that I make up little pictures or get stuffed dolls to put up to let my kids know how Im feeling on any given day. I went and printed out a picture of Elmo for my really good days, a picture of Kermit for my ok but need to take it easy days, and a picture of Oscar the Grouch for my really, really bad days. Every morning I put up the appropriate "face" on the fridge, and the kids can now tell how things are going for me without us having to talk about it. I've been doing this for about a week or so now and it's really helping!

Whew-sorry for going on like this so much! I just really do know what you're going through here and that got me going..I hope you get to feeling a little better and I hope your son is feeling better, too!

Please keep posting...you are now part of our fibro family and we are here for you whenever you need us!

{{{{{{soft hugs}}}}}}}

Danielle,

Thank you for expressing how fibro affects you so well. I wish I had the Sesame Street characters feeling scale when my children were young. In fact, I could use it now. After all Oscar is a grouchy but lovable character.

JS,

All I can remeber feeling when my children were young is the exhaustion of fibro. I cannot even imagine caring for a child with autism along with one who does not have it. However, I have friends who have children who do have Autism. I have watched how hard they work so I have a tiny understanding.

I do however, know what it is like to be up all night with a sick child. I hope you can get some much needed rest over the next week or so. Fibro is not something you can ease with a few hours rest.

Take care,

Donnaeil
Donnaeil

Post Edited (donnaeil) : 2/14/2009 10:17:59 AM (GMT-7)

Thanks so much everyone, I am so happy I joined this board!

First of all, Charlie is doing much better...he is such a trooper. He's been through so much in his short life...two heart caths, two open heart surgeries, two other surgeries and now the autism. He's my hero for sure. I need to take a cue from him.

I think what most of you suggested will help...stretching (I used to do yoga and loved it), accepting it, planning ahead, knowing my limits...thanks for all of those tips.

To Danielle - you had really great advice. I loved the idea of the Sesame Street pics to show how I am feeling. PECS (basically picture cards) are something that are used with children on the spectrum all of the time. Since they don't understand things that are abstract like social cues by reading your body language or face...picture cards are concrete and they get that. This is one of my hardest things right now, telling my kids that mommy is quite feeling great today. Their little elbows and knees poking into me feel like knives. Charlie requires a lot of sensory input and the biggest thing that calms him is to play with my hair, but lately I can't even deal with that. I just hate being touched some days. My Rheumy told me to cut out caffeine, so I started that day (I had three to four cups every morning) and haven't had one drop. That alone has helped with my anxiety. I'm working on the sugar...that's the hard one for me. I've also cut way back on anything white and have added quinoa, brown rice, soy beans, lentils, spinach, whole grain bread and steel cut oats into my daily diet and I have noticed such a difference with my mental state as well as just feeling lighter.

I see my Rheumy on Wednesday for my follow-up, so I'll check back in then if not before. I also have my tests for esophageal motility on Friday the 27th to rule out scleroderma or another connective-tissue or auto-immune disease. Again, many thanks to you all.

Jennifer
Thirty-eight year old, Married fot thirteen wonderful years, SAHM to two awesome little boys
Asthma, Depression/Anxiety, GERD/EE, Fibromyalgia
Flovent, Effexor, Xanax as needed, Prilosec, Ibuprofen, Gabapentin