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I get tired so easy, is this normal?

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Fibromyalgia
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Posted 10/9/2015 2:17 AM (GMT 0)
cry I am 50 years old, have had fibromyalgia for 8 years now. At first the docs put me on increasing pain meds all the way up to 40 mg of Oxycoton 3x a day, yes I was of in la la land! Eventually, I was taken off that and put on 60mg of Morphine ER 3x per day, 30mg of Morphine IR, 4 to 6x per day as needed, with 1mg Xanax 3x, Topomax, etc (forgive the spelling on these) Last year, I began weaning down my med levels, by the beginning of this year, I was down to 60mg Morphine ER 15mg 1x per day, 1.5mg a day for Klonopin, still on Topomax, not mentioned was I do have hypothyroid, which developed in the last few years, being treated with a med for that, and diagnosed in June 2015 with a Vit D deficiency (but very little was discussed on that - doc put me on 50,000 Vit D 1x per week)

I try to make light of it to my family, say things like my body is rebelling against me, everything all at once. I adopted 2 babies, one in 2005 with special needs, he is amazing! But requires a lot of care, and my youngest, was in 2007. Six months after I received her, I came down with my illness. At first none of us had no idea what we were dealing with. My two little ones have never known the mother, my two older ones had, they were born 1983 & 1995. (BTW any of you thinking this woman is crazy, yes my family is complete now ;-) ) I try to stay positive, but in all honesty, I hurt so bad, I am off the morphine & Klonopin, after 3 months of sheer agony, I did get the lightest dose of Percocet and take it only as needed. I get tired so easily, is this normal? And when the pain goes from moderate to bad to extremely unbearable, it happens quickly, does this happen to other people to?

I have learned everyone varies so much, I don't get very good answers from the doctor. I was able to learn more about the severe muscle weakness which I am now experiencing too on a different thread (one I learned I wasn't alone, two it gave me more to think about yeah ) And yes I am going to take one of those rare moments and say what I really want to: I hurt, I am so exhausted, and I wish this would go away I want the old me back!

Thanks for reading my post, T
Posted 10/9/2015 6:47 AM (GMT 0)
As far as I know, both the hypothyroidism and the Vitamin D deficiency can make you tired; once those are under control, it might help.

But to answer your question, yes fibro makes me tire easily. I went to the grocery yesterday, and it's pretty routine for me to be completely wiped out afterward. After I shop, load the groceries, and carry them in, I just have to put up the cold stuff and leave the remainder on the counter while I rest a bit. It is the same with pretty much anything physical I do. I have a threshold point, and once I reach it, I am done for awhile. Cleaning house has to be done in spurts. Bathrooms one day, floors another, etc. I can see how caring for two young children would be exhausting. It's tiring for any mom, but I think it would definitely be escalated for someone with fibro.

I also understand what you are talking about with the pain going from 0-60 in a short period of time. I will be feeling fine one minute, and then it seems like everything I did that day will catch up with me, and I will be in considerable pain.

I know that your child with special needs requires a lot of care, but in other ways, maybe you could slow down a bit. I will preface this by saying that my daughter is grown, and I think she turned out ok. :-) When she was a child, I had (still have) a whole host of health problems. She never knew any other life. I wasn't able to be very physically active, and energy was a problem. So, we did things together like watch movies, go to the library, go for walks, work puzzles, coloring books, etc. There wasn't a lot of running around. Some days I would lie on the couch in the afternoons and we would just talk. One of my favorite games was "beauty shop." I just got to sit there and have my hair done. :) We are very close today. I guess my point is that while your second two children may not have the "same" mom your first two had, it doesn't mean that they are getting short changed in any way. In my opinion, it's the time spent together, not the activity.
Posted 10/9/2015 12:00 PM (GMT 0)
Welcome Ms. Ladybug--

Austen has given you some good stuff. To make a quick answer,yes--being this drained and exhausted is normal with fibro. Absolutely. Ditto on the rest after laundry/groceries/cleaning. Sometime rest happens in the middle as well. I know the location of the blood pressure machine location in my favorite grocery store, because sometimes I just have to sit down.

It sounds as if you were on some heavy duty drugs that were partially treating the fatigue. Lack of sleep can cause fatigue. Too much pain can cause fatigue. Too much exertion, stress, all of these lifestyle situations affect fibro-bodies.

There are a few things I have found to help combat the fatigue. Certainly reordering priorities is very important, and learning the useful limits of your energy. What needs to be done and what is just nice but extra? For instance,dishes and cooking are a necessity in my home--vacuuming is nice, but gets done once a week or so.

Avoid napping if you can--I only nap in extreme situations. I do lie down for 15-20 minute in mini-meditation, but do not sleep. Too much stillness can be as bad for people with fibro as excessive movement.

I exercise regularly, which may increase the pain short-term, but helps maintain energy long-term. Exercise builds core strength and endurance. This helps maintain your overall strength and helps you get less fatigued over a period of time.

There are many more things you can do, but as you said earlier, we are all different and so have different needs which necessitate varying solutions.

Feel well!
Posted 10/9/2015 1:30 PM (GMT 0)
Thank you both AustenFan and Myself09 through the years I have learned to stop beating myself up about not being able to do my favorite "physical" activities anymore (golfing, biking, power walking, etc) and taught myself to focus on not what I could no longer do in regards to myself, but what I can do and how can I still do some of the things I enjoy doing (I love to travel, so my husband and I rent wheelchairs - it helps me last longer) or I try to pace myself (try has been a key word, not always successful) BUT I haven't re-taught myself to look at parenting my two younger kids. AustenFan's reading your post helped me see that in myself immediately, your right. My youngest daughter is often a mother hen, I remind her who mom is, lovingly, then invite her to stay with me when she is worried about me (she is very sweet by nature) and my 10 year old, well his skills are all over the place, but some including the 2 year old of getting into everything are most likely not going to pass. This I take care of by "baby proofing the house" which is a bit of a challenge (he is not the size of a 2 year old anymore)

Myself09, thank you for the avoid napping part, I have been trying to grab "extra sleep" every chance I can get. Maybe this will help. The exercise part I am still trying to find my balance of just enough to not too much, after years of trying to find this balance, I have yet to find that place yet with a lot of set backs. This might sound negative, please don't take it that way, for me it has all been trial and either error or (I wanted to put success afterwards but after years of trying to find success I haven't found it yet)

I think I have always thought if I... eat right, or exercise right, or take the medicines correctly, or do something I will feel better and will get better. This is that last step of realization I haven't quite grasped yet (maybe the word accepted should be applied) there is no getting better. At least not that I know of...

I know I sound down, normally I am not. Somewhere along the way there has always been a beacon of hope that I will be better again. I think it has just hit me that isn't going to happen.
Posted 10/9/2015 1:45 PM (GMT 0)
Just a thought--we are trained by our culture to believe that cures exist for everything, that medication or living 'right' (a determination that has no single or simple definition, though many will insist they have divined the secret) will wipe out the condition. Every illness can be cured in 60 minutes or less is the conventional wisdom. This has become even worse in recent years, with the proliferation of TV drug campaigns and our enormously short attention spans.

Getting better means learning to manage the condition rather than let it manage you. That is the positive way of looking at it. I still bike and hike,and have an exercise routine at least 5 days a week. I know my limits. If I am doing a very strenuous exercise day, my BF knows he is in charge of dinner. I generally know when my system is over-taxed, and lessen or cancel exercise. And exercise is like anything else--you cannot do what you did pre-condition. But,you can still do something low-impact, and starting slow and building up is great for endurance.

We all yearn for the past. But we need to make friends with the present. Sorry,LadyBug--it's a rough realization.

Also--I am not a mother--so I am sure others will have their experiences to share.
Posted 10/9/2015 2:53 PM (GMT 0)
Ladybug,
Hola! You're allowed to feel down. There is a lot on your shoulders. I can't even imagine being a mother of young children while having this disease! It's a matter of whether the down feelings take over. I confess I'm there a lot and am trying to find better ways of managing. I just don't understand that it's said that fibro doesn't progress. I've gone from working 40 hours a week to 6, Tendonitis issues, fatigue that can be crippling, cognitive decline, and flare up pain that makes me cry. It has worsened and my limits and tolerances get lower and lower, so managing the condition is like trying to hit a moving target. I'm not on much pain meds though. Maybe I need to give in to big Pharma.

Yes, fatigue and exhaustion appear in most Fibromites. I actually found napping helps. Sometimes I rest on a yoga mat and play gong meditation music, in place of a nap. d-Ribose helps me sometimes with with the fatigue.

Almost, lol, don't forget there's always the perfect diet that causes weight loss and a model body in one week, the right religion that guarantees you heavenly rewards, and the lotto ticket that grants millions in a second. I've been hearing college professors complain more recently of students who expect A's for doing next to nothing.

I wish there was a service similar to a Therapetic Staff Support Specialist for special needs kids, someone who is a "helper", per se, for us, a personal cheerleader, motivator, organizer, helper when needed.

I wonder how much society would benefit by having more and affordable management modalities available for people like us. A kinder, supportive community. Wait, I'm dreaming. Waking up now.

T
Posted 10/9/2015 3:39 PM (GMT 0)
I had never heard of d-Ribose before, so this sent my husband and I on the internet search of "what is that" question answered (gotta love the internet for quick answers) I will be getting some to try :) Lack of energy has been a topic in our household well for as long as I can remember... back in the beginning when I was going to a pain management specialist, he would give me samples of Provigil & Nuvigil (great for energy & staying awake) however when I switched insurances, no longer could see this doctor, I requested a prescription for either of these medications (which were not taken at the same time) I was told it was not covered by the insurance and the one month supply was $1600! Needless to say, I didn't get those meds anymore.

I have found when I am pushed past the point of being able to go on, when I lay down it helps. It helps to occupy my mind on something else. And I try to remind myself that when I am not in pain to recognize the moment for what it is, something to be cherished.

I started out feeling pretty sad this morning, but it didn't last long. Getting the kids ready for school and life itself took over.
Posted 10/9/2015 6:47 PM (GMT 0)
I have always used dribose for couple decades..it helped tremendously, until my d crashed ..now it still helps but not as much..

My dr and i agreed that i will reup my d in the winter more..and he will recheck in the spring...

You have a lot to handle , but in my experience there s a lot of self help you can do..and we do get better, then worse again..weather issues are a big trigger for me..

Just welcome, and ask a lot of questions, great folks here
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