So new to this and sad. So many emotions. Want to know how the fatigue portion of this disease plays out.
Sometimes the fatigue is as bad as the pain. I have learned to listen to my body. If I need a nap I try to get one. I simply do not have the energy I once had. I limit my trips outside. I stop often & sit & rest when possible. I also use a cane. All of us here learn different ways to cope. We all find what works for us. It may take a little time. Listen to people here for ideas. Then though trial & error find what works for you. Also always ask your physician. Hope that helps.
For some people fatigue is an ongoing issue, for others it may only appear during a flare. For myself, fatigue is ongoing, and worse during a flare. There are days where I need to lay down by 10 in the morning. But I also give myself permission to do so. Sometimes reframing things can make a big difference. Rather than being upset/disappointed that I need to lay down, I just go do it.
As a general guideline, when you are being appropriately treated, the fatigue will likely lessen. It may not go away, but it will likely lessen. I remember when I was first diagnosed, I was very badly fatigued. Going to the grocery store tired me out for the day, I would fall asleep reading to my kids, and not laying down repeatedly through the day was not an option.
When I was put on my first DMARD, it took some time, but the fatigue lessened significantly. Whenever I think of my current level of fatigue and start to feel bad for myself, I mentally go back and remember just how bad it used to be.
There also is so much emotional strain early on, with so much new information, and the understandable feeling that your life is changed forever, in a bad way. My life has changed, but it's not all bad. I have been able to stay relatively active. Yes, sometimes I cry when I am taking a walk, or when I had to give up running (for now). But it's a pity party, and I try to move on quickly. Moving is good for me. And I look at it as a challenge to my physical therapists. Last spring I was working on my hips. The challenge was to find exercises that didn't hurt my knee.
It's not always easy. Keep reaching out for support. And as I said, let yourself rest. Planning things out can make things much more enjoyable. One of my friends used to ask me why I was cutting a day trip short. I wasn't. I knew I had reached my limit and still needed to drive home. I planned for it. And I took it easy the next day.
I agree with Elizabeth, the fatigue can be just as debilitating as the pain. The key is not to be in one position too long, or you just make the stiffness worse, to the point of locking up!
I cannot even sit here in a desk chair of my choosing long before it's time to walk around, impgypsy!
It can make you very emotional, especially when first diagnosed, it is a lot to deal with. Self education is the key, that and a good Rheumatologist. Just realize that even though we needed this diagnosed years ago, wanted it slowed down years ago, that it takes time for a Rheum to go through protocol, and the allowances of each insurance company are different.
Wishing you well,
SK
I am so thankful to have found this site, as it is definitely where I am beginning to learn the most about this disease. I am so new to this, that I do not even understand what a "FLAREUP" is..could someone please explain?
SK said:
I agree with Elizabeth, the fatigue can be just as debilitating as the pain. The key is not to be in one position too long, or you just make the stiffness worse, to the point of locking up!
I cannot even sit here in a desk chair of my choosing long before it's time to walk around, impgypsy!
It can make you very emotional, especially when first diagnosed, it is a lot to deal with. Self education is the key, that and a good Rheumatologist. Just realize that even though we needed this diagnosed years ago, wanted it slowed down years ago, that it takes time for a Rheum to go through protocol, and the allowances of each insurance company are different.
Wishing you well,
SK
I had never heard it described as a 'flare' either, my Doctors describe it as a 'pain cycle'. It is simply when it all kicks up and you are at your worst. Everything hurts and the exhaustion is worse than usual.
If you prefer the medical terms and further explanation:
http://www.cme.umn.edu/prod/groups/med/@pub/@med/@cme/documents/content/med_content_146863.pdf
The fatigue sucks to put it nicely. Pain and tiredness can make you very emotional. I try and stay positive and get on top of the pain before it gets on top of me.
Ben's Friends is a wonderful place for so many rare diseases, it is comprised by hundreds of volunteers who are also patients, there are 30 different rare disease groups. I am moderator on 3 of the sites, and belong to nearly a dozen different groups.
The founders and administrators are working constantly on a shoe string budget to open more sites for more rare diseases, and have been partnering with major hospitals to bring us the best information possible to ensure our health, education and well being.
SK said:
I had never heard it described as a 'flare' either, my Doctors describe it as a 'pain cycle'. It is simply when it all kicks up and you are at your worst. Everything hurts and the exhaustion is worse than usual.
If you prefer the medical terms and further explanation:
http://www.cme.umn.edu/prod/groups/med/@pub/@med/@cme/documents/con...
I was wondering how accurate this description of a flare was in relation to an inflammatory disease. It seemed to refer to chronic pain, but a flare of PsA is due to an increase in disease activity, and can cause damage. Whereas a flare in chronic pain means an increase in pain, but is not related to increased disease activity.
Thanks for the correction, Stoney, guess I have gotten used to the Fibro version of 'flare', you are correct! Thanks for catching that!
Is a flare up obvious?
SK said:
Thanks for the correction, Stoney, guess I have gotten used to the Fibro version of 'flare', you are correct! Thanks for catching that!
OH YES!
I stand corrected, Grumpycat says this is not the case. She has an advanced nursing degree, I do not! So I have to go with the expert if you are talking about more than just a pain flare!
Okay, now I am perfectly clear as mud regarding the word 'flare'...lol Your answer Sybil is actually very helpful. This disease seems to be so different from person to person and that makes it harder to grasp. It would be so much easier if we all had a 'one size fits all' disease.
sybil said:
Re the question about flares - I've been diagnosed for 14 months and cannot relate to the word 'flare'. That's partly because it sounds as if things get more intense and for me a worsening of my disease invariably involves feeling greyer, more tired, more out of it. My rheumy uses the word & wants me to show him how things are when I have a 'flare' - he doesn't listen! If I turned up with more pain, fatigue, more odd sensations he'd take no notice ...... his version of flare requires visible, measurable things.