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Does it ever get any easier? (not necessarily better)

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Posted 8/19/2010 3:54 PM (GMT 0)
I am sitting here, about to cry because my daughter will be a lot more active in her dance class this year. Normally, I should be excited that her class is planning a trip to Magic Mountain, plus Disneyland... not to mention fairs and parades here in town. She is only 5 but was chosen for a mini performing group. I am glad for her and want to foster her skills and not hinder them, but I am hoping i can keep up with all that!

I noticed when walking with my friend who has fibro, through Target, that she was walking faster than me. I asked her how she does it... she said just to plow through the pain. Is that what I have to do? because sometimes I feel it is impossible... my legs feel like jello. So, do you all just get used to it at some point, where you are able to do a lot of activities and not stress over it?

(again, keep in mind, I do not have a diagnosis yet, but never the less, have chronic, widespread pain that is effecting my life)

Kellie
Posted 8/19/2010 4:02 PM (GMT 0)
Good question!  I too look forward to seeing the answers of others who have been dealing with fibro far longer.  I've only been dx'd for the last 2 1/2 years and while I've learned a bit to pace myself I still struggle a great deal with "accepting" all fibro brings. 

 

I have basically just "pushed" through things I know I have to do or won't get done including contributing to our income.  My fibro is reaching the point the last couple of months where it's extremely difficult to just push through the day however. 

Posted 8/19/2010 4:08 PM (GMT 0)
Kellie, I would answer just like your friend. Many days I just plow through the pain and I end up feeling better. I really feel bad in the morning. I wake up with a headache and back ache and lots of other pains. Some days my knees and feet hurt something horrible. But, I make myself get up, have a cup of coffee and then I take my dog for a 1 to 2 mile walk. I start out slow but because she is an enthusiastic large dog we wind up somewhere just short of a jog. When we get home I immediately get out my yoga mat and do a series of slow and gentle stretches and yoga poses. I feel so much better after this. Then in the afternoon I do a cardiovascular workout on the elliptical followed by more yoga and stretches.

Yes this is all time consuming but for me it is worth it. I know not everybody can do this much but even a little moving around and a few soft stretches would help I would think.
Posted 8/19/2010 4:17 PM (GMT 0)
Kellie, it gets easier in a sense because you do learn to live with it. Pain levels do
change and you learn to pace yourself. Yes, there are days where you push through
it and may hurt more the next day for doing so. Everything with fibro is trial and
error, but you sort of find out what works for you.

My heart always goes out to the Moms who have small children at home. Kids keep
you hopping. Knowing when to ask for help around the house is important and taking
time for yourself is too. Finding a balance that works for you. You know yourself
better than anyone else and if your body is telling you to slow down...slow down but
never to the point you become inactive.

This must be a challenging time for you, waiting on a diagnosis. The important
thing is taking time to enjoy...there are things that can always wait, ie housework:)

Hugs, Robin
Posted 8/19/2010 4:34 PM (GMT 0)
I know what you mean about the legs like jello.
I get that way often.

Most days I do MAKE myself walk and do something.
Otherwise I would just sit around and cry and feel sorry for myself.

I'm not as bad as most but I have had more bad days than good ones lately.

I used to be able to walk 4.5 to 5 miles.
Now I'm lucky if I get one or 2 in.
There for awhile I wasn't able to walk much or exercise because I did feel so bad.

I started Zumba class and loved it. Had no problems with it at first then after a couple months while doing squats and leg lifts my legs just stopped working and I almost passed out.
My PA said that it may be too much for me and I might have to give it up.


But most days I too just plug through it all.
I think the dizziness right now is the worst for me and nothing seems to make it any better.

You just have to do things and see what works for you and what doesn't.
Know your limits and don't push them.

I used to go roller skating with my ex boyfriend and I loved it. hadn't roller skated in years and was scared to try it because it takes so much leg muscle.
But I did it slowly. Would skate for a song and then sit out a couple.
Just figured out what worked and what didn't. :D

Sending you hugs and keep your chin up girl.
Posted 8/19/2010 5:29 PM (GMT 0)
thanks.... I am just thinking about all the walking around at Magic Mountain... and then they want to do take part in an event at Disneyland.... ah , the joys of living in CA. I recognize that I do need to keep moving and I am committed to exercising at least three times a week, plus getting housework done, etc. It's the fact that I don't have as much energy and the pain keeps me from doing things like I used to that gets me down.

the heat seems to make me worse too... that is the one thing that makes me wonder if it is NOT fibro... (however, I think they are ruling MS out at this point b/c no lesions were found, and worse symptoms with heat is one of the main symptoms of MS). I feel like the heat makes me so weak and makes the pain increase. Plus, having a herniated disc in my lower back doesn't help (although my back doesn't bother me too much.... it is my legs, feet, knees, hips, arms, elbows, and shoulders that bother me the most)

i do plan on starting some kind of treatment eventually... either alternative or drugs. I think I want to try cutting things out of my diet first. But I want to wait to get a diagnose first before starting anything drastic. (well, can't have drugs until I get diagnosed anyway)
Posted 8/19/2010 5:54 PM (GMT 0)
Bridget, whenever I have really busy activities....not a normal day....I will take a little more ibuprofen and Tylenol.  I use ibuprofen with food and Tylenol, along with some supplements that help me with pain and fatigue, but you must know that already.  I've talked about it enough.

 

Anyway, my adult son came for a visit to Florida last winter and wanted to spend his birthday at DisneyWorld.  I didn't know how I would manage but I sure wasn't going to worry about it because that would do no good and only cause more pain.  After an hour drive, we arrived.  He asked if I needed a wheelchair and I told him I didn't.  I figured I could sit down if I got really bad.  (I'm glad I didn't either because there were so many people that you couldn't maneuver a wheelchair!)  I usually take ibuprofen every six hour with Tylenol in between.  That means I'm taking something every three hours.  But on this day, I alternated the meds every two hours and I didn't wait until I was in terrible pain, either. 

 

Bottom line?  I had a fabulous time and walked all through Fantasyland and rode most of the rides...even Splash Mountain with it's 55 foot drop!  I'm not spring chicken either...63 years old.  We got to the park at 9 AM and back to the car around 6:30 PM.  Yes, I was tired and a little more sore than usual but it was soooo worth it.  What wonderful memories.  Guess we will be heading to Busch Gardens on his next visit.  I can't wait!

 

So, make plans on how you will handle things when your daughter has these trips and go expecting to have a wonderful time.  You can do it!  And think of the wonderful memories you will have with your daughter.  That makes it all worthwhile.

 

Sherrine

Posted 8/19/2010 6:24 PM (GMT 0)
I have been living with Fibro pain since I was 15 - it's flared and receded so many times, but nothing yet that has stopped the pain.

Like the others above, I have just plowed thru the pain. I was a single mom for a long time...no one else was around to help me, so I had no choice...I pushed the pain to the back of my head, did what needed to be done and then gave in to it when everything was finished. My kids ended up raising themselves in a lot of ways, because Mom just wasn't able to do much, or because Mom did too much, to keep up with everyone.

I can remember days of coming home from work after a 12 hour day, kissing my kids goodnight after about 15 minutes with them going over their day, and then going to bed myself not long after. Most mornings I didn't see my kids as I left before they had to be up (I commuted 90 minutes twice a day) so the added stress increased my pain. And sometimes...you just can't push any harder.

That's where you have to pace yourself. You need to see the big picture and break down what you can and can't manage, and then develop strategies for managing the things you've said are good to go. It helps you build in rest time and hard tasks with easy tasks, so you're not overly straining your muscles.

You know you best Tracy and you know what you are and aren't capable of. I hope you are able to decide something and then put it out of your mind for a bit!

Take care and I'll be looking for an update!

Hugs,
Pam
Posted 8/19/2010 9:03 PM (GMT 0)
thanks... I've only had chronic pain for about 4 months, so this is all new to me. Is it normal to feel depressed at the beginning? By the way, I have tried ibruprofen and it does not help me. How many should I take? I only took one, maybe that is why.

I think I am posting at a bad time, so ignore m... just kidding. I am pms'ing right now which makes both my pain and my emtions worse... plus, it is still hot here which makes it worse. I forgot that when I went to Legoland this summer, I was fine. But I think it helped that it was only 60 degrees at the time and since it was just us, walking around with our kids, we were able to go s-l-o-w (plus it does not get very crowded at Legoland)

I also tend to get overwhelmed easily. I know I will make it though. But it is hard when even volunteering for one hour in my kid's classrooms makes me feel so utterly EXHAUSTED!! It makes me wonder how I would do if I ever had to get a job! (which I technically need to for the money, but I have no idea what to do that I would enjoy and would not make my pain worse)

anyway, i am rambling on here.... sorry to be so negative. thanks for your encouragment. :)
Posted 8/19/2010 9:21 PM (GMT 0)
My doctor has me taking 600 mg ...that's three tablets.  If I'm in a flare, I take these every six hours around the clock.  If I'm having a good day, I can take it as little as two time...every 12 hours.  But, be sure to talk to your doctor about that.  My doctor knows and has okayed this for me.  I tried taking two tablets (400 mg) for a dose and it didn't help me.  But once I went up to 600 mg I got some relief.  The prescription form of ibuprofen is 800 mg.

 

Sherrine

Posted 8/19/2010 9:28 PM (GMT 0)
Kellie, I think it is normal to grieve the loss of good health. It takes time to accept
that you are no longer physically the person you were before all the symptoms
of pain and fatigued started. I went through a grieving period, feeling sorry for
myself. I was angry that I could no longer be as active as I once was. It was hard to
deal with.. It wasn't until I accepted that I do have a chronic illness and my quality of
life depends on how I deal with it . I decided I need to do what I can do to help
myself. I realized that I am a very important part of my treatment. Meds can only
do so much. We need to help ourselves by keeping active and socially connected.
We need to find ways to distract our pain. Even though we hurt, we can't put pain
as the focus of our life. It all takes time. Everyone grieves in their own way but at
some point life has to go on. In spite of pain, life can be happy :)

Kellie, I was overwhelmed in the beginning, but there is light at the end of the
tunnel. You will find what works for you, just take it one day at a time1

Wishing you the best and sending a gentle hug:)
Hugs, Robin
Posted 8/19/2010 9:35 PM (GMT 0)
The pain for me is the hardest part - i can't just "push through" or "accept" being in pain, im TERRIFIED it'll make me a horrible and bitter person, over time.

At the moment, I just try and pace myself at work, take regular "secret" breaks.

good look :)

hope everybody here feels better x
Posted 8/19/2010 9:35 PM (GMT 0)

Is there any other group of people with problems who have to keep moving or else they hurt?  I'm tired of always having to move.  To me, it's a double-edged sword.  If we don't move, we hurt, if we move too much, we hurt.  I get very frustrated!  To top it all off, at the end of the day, I want to relax, but I have to keep moving so not in pain to go to bed!  aaarrrggghhh  :)

Posted 8/19/2010 11:13 PM (GMT 0)
I know! I can never sit and watch a two-hour movie, I have to keep getting up and go feed the animals or unload a few dishes or something, then come back. (I've also put the idea out here that this disjointed way of getting things done contributes to fibrofog - because as soon as we start accomplishing something, we have to switch to something else, to save our muscles! Our brain impulses (?) are always at cross-purposes!)

As far as not being able to keep up with other people, it does take time to accept, and it takes them awhile, too. Even now, my husband will be walking a few steps ahead of me, and I'll say, "Hey! Don't I know you?" Then he realizes (again) that I'm not being lazy, I'm just not going to go into flare mode to keep from looking like a little old lady. Not no more.

Debbie
Posted 8/19/2010 11:15 PM (GMT 0)
Ntish, I know what you mean. I am nervous I am going to be like my mom. SHe has major back problems, plus Fibromyalgia and chronic myofasical pain syndrome.... her back is so bad that she can't exercise very well at all. She had two failed back surgeries.

I am going to do my best. This morning, I walked on the treadmill at the gym and even though I was in pain and tired and not wanting to go, I was surprised I had more energy then I thought I would. That was different then the times I went in the afternoon when it was HOT. (It gets to be 100 degrees or more here)

Does anyone else feel worse in extreme heat?
Posted 8/19/2010 11:40 PM (GMT 0)
Yes, extreme heat zaps my energy but I'll take it anytime over moderate cold!
Posted 8/19/2010 11:45 PM (GMT 0)

Hi Bridget,

Try to take things one day at a time.  It sounds like your daughter really wants to be able to do this, so do give it a try.  Tell the other parents that you have a muscle disorder and fatigue and that you don't know if you can always keep up.  I am sure that they will understand.  If you can't do it, you can't do it.  But if you worry about it, you will make it worse and harder to handle.  The stress will make everything worse. 

I too can't handle the heat, and the humidity makes me even worse.  We have had a hot and humid summer and I have been miserable.  So I understand where you are coming from. 

You said that you were depressed when you first got fibro.  Are you taking anything for the depression or seeing anybody?  Often depression can cause ahces and pains like fibro.  If you got your depression treated, the aches and pains might go away.  Also antidepressants do help with fibromyalgia.  Something to think about.  Are you feeling depressed now?  That is something that you want to stay on top of. 

I hope that you feel better soon.  Forgive me if I am forgetting something.  I am trying to stop smoking and haven't had a smoke all day.  So I am starting to get a little edgy.  I just took a xanax hoping to curb it.  My husband is quitting too, but he is taking chantix.  I wish I had some, actually I do, but it is two years old.  So I don't think it would be much good.  I don't know.  It is tempting.  It gives you a good feeling, like you don't need anything, so it takes away the cravings.  Sounds good to me right now.  But I might call my pdoc and see if he would prescribe it for me.  I am new to my MD and he wants me to make a special appointment to see him and I don't want to.  That is why I am quitting cold turkey.  Wish me luck.

Hugs, Karen

Posted 8/19/2010 11:45 PM (GMT 0)
Definately agree with Debbie. I'll take heat over cold. What is funny, it can be 103
degrees here and I'll nuke a bedbuddy to use when I'm flaring and that heat in the
heat feels good!

hugs, Robin

PS Good luck Karen on quitting smoking. You can do it!

Post Edited (crazykitty) : 8/19/2010 5:56:34 PM (GMT-6)

Posted 8/20/2010 12:04 AM (GMT 0)
Thanks Robin,

I really need the encouragement. I am getting the tenseness in quitting. Getting a short fuze. Going to walk it off. I think I need a good long relaxing walk.

Have a good night.

Hugs, Karen
Posted 8/20/2010 12:51 AM (GMT 0)

Karen,  keep going on the non-smoking thing!  I quit cold turkey on April 15, 2010, and for 4 days, I was a witch, to put it very nicely!  After that, I had no problems.  I haven't snuck one drag from one butt.  I was a pack 1/2 a day smoker for 27 years.  My motivation...I didn't want to be the mother-of-the-bride who stood outside sucking on a smoke!  (My daughter got married in June)  I had tried many times before, but I had always cheated.  I know that from now on, if I take one drag from a smoke, I will start again.  I've only gained 6 pounds, but I was never much of a snacker beforehand.  I never felt as if I had any side effects from smoking.  It's probably why I kept doing it for so long.  I even sang in a band for 19 years, singing songs like Evenescense, and she sings very high!

You've got to keep going.  If "I" can do this, than you can!  I can't promise that you'll feel much better.  This whole fibro thing kind keeps good feelings on the sidelines!  I will say, that food is way too salty for me now!  hahaha  Keep on keepin' on!!

Nikki

Posted 8/20/2010 12:58 PM (GMT 0)
Hi Kellie, I just wanted to let you know that Im sorry for not posting sooner but it was a long day yesterday with very little time on the computer. I want you to know that I do understand what it is like trying to keep up with someone who walks much faster than you. We are all so different in what we can and cant do so dont feel so bad that this lady can walk faster than you. Her fibro pain might be a little different than yours. I am by no means saying she doesnt have it but hers might be at a different level right now.
You have gotten some really good advice from others here on the trip to Disneyland so I dont have much more to add to that. I will be praying that you do enjoy yourself once you are there.
Gentle Hugs
Shirley

P.S. Karen I totally understand how hard it is to quit smoking I didnt get lung cancer from second hand smoke. I havent had a cigarrette now for over a week and it still sucks but not quite as bad. I dont think I could ever do cold turkey. That is not within my power. I am using the patch and I also have one of the electronic cigarrettes that doesnt have to tar that goes into the lungs but it does have nicotine in it and it helps take the edge off. I honestly think that as long as I have this I can probably make it. Good Luck and I will be praying for you.
Gentle Hugs
Shirley
Posted 8/21/2010 3:41 AM (GMT 0)
I forgot who asked the question about depression-- sorry! I don't think I am clinically depressed. I eat and do enjoy activities. I guess what I mean is more of a grief about the pain and not doing things like I used to, like someone else mentioned. I am more of a melancholy type person, so I get "depressed" easily but not the type to need meds for it... does that make sense? I just am a perfectionist and get stressed easily. I am also a quiet person and I have been a little bit shyer than normal, but I am not sure if that is stemming from my pain, or feeling depressed/stressed, or what.

I think once I get a diagnosis, that will take a lot of my stress off.

We are also having financial problems, so that only compounds things for me.

I guess I should say from the get-go, that I am not really big into taking pain meds, or even anti-depressants (I recognize that a lot of people need them though). If I could find one, I would see a Naturopath and see what he/she suggests for natural treatments.

I don't think drugs are evil, I just personally don't know if I want to deal with side effects. But I am not counting it out totally either because I may come to a point where I feel like that is the only solution for me.
Posted 8/22/2010 6:21 PM (GMT 0)
Bridget10, I think what you need to do with regards to your concerns about the side effects of medications, is weigh the potential benefits of treatment against the unwanted effect of the medication. Natural treatments are not necessarily safer or with fewer side effects, there is no inherent safeness in the fact that the molecule was synthesized by a biological organism. (At the moment, I'd say their efficacy or effectiveness has to be something of a personal consideration.)

Take care

James
Posted 8/22/2010 7:07 PM (GMT 0)
If a person wants to avoid the use of pharmaceuticals, and decides to only seek them out when it becomes medically critical - when there is no other alternative, then that is their decision and that has to be respected.
Posted 8/23/2010 3:25 AM (GMT 0)
hi bridget. I am a stay at home mom and have a very ACTIVE 4yr old and a 6 month old boxer!. I've only been dealing with fibro since 2006. I agree with your friend...."gotta plow through the pain every day". I try to take it one day at a time but do have a good cry from time to time. I also have Hashimoto's Thyroiditis, adrenal fatigue, myofacial pain, degenerative disc disease, and arthritis in my spine. Mornings are worse for me but I try to walk a mile a day and that seems to help. I also get bumbed out but do not consider myself to be depressed. I don't like to be on a list of meds so I've been trying to seek other alternatives. I have made changes in my diet that have helped dramatically, on natural meds, see a doctor of osteopathy for adjustments, and pain management doc. I don't know how you feel about these. I get adjustments and injections (trigger point, epidurals and facet joint). Right now I'm on a trial and error regarding my meds to see what works best for me.

Wishing you a pain free tomorrow :)
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