Working through pain and fatigue

CharlieICURN

So I have a chronic pain condition that also causes some significant fatigue. I also feel like my recovery time after a workout seems ridiculously prolonged. I'm being seen by a rheumatologist to determine the best treatment options at this point. I have fibromyalgia and the rheumatologist believes I may have an inflammatory autoimmune condition such as lupus.

So I've been eating right and losing but I would like to incorporate more physical activity into my routine. I've been increasing my walking and step count and trying to do some light swimming in the pool. I also have a fairly strenuous job where I'm on my feet for a good percentage of the night and pushing and pulling patients.
I feel like this completely depletes any energy stores I have. Then my joints and muscles start hurting soooo bad. Right now my big flare up is in my right hip and I just feel like I can't put any weight on it because it feels like there is glass in my hip joint.
The pain disrupts my sleep every single night.
I constantly feel overwhelmingly fatigued. I was hoping that eating better would help but it hasn't.
Yesterday I went out and walked a lot and walked through the pain but I was limping by the end of the night. I couldn't even drive and had to have my husband do it because of that right hip hurting.
So how do you do it? If you have a chronic pain condition or some sort of inflammatory condition like lupus or RA, how do you stay active during flair ups? I went for a ton of blood work and X-rays this week and I follow up with the rheumatologist in two more weeks so hopefully I can figure out what's up with this and get treatment. My mother has RA and my aunt has lupus and they were both diagnosed at age 29. I'm 31 and have been dealing with a bizarre array of symptoms for a few years (persistent wbc elevation, low grade fevers, severe joint and muscle pain, sporadic angioedema in my hands, elevated inflammatory markers, etc) so my rheumatologist is pretty sure I have something going on but wants to confirm with blood work.
Even on days where I'm super fatigued I'll try to exercise but then I feel like it does me in for the rest of the week and I'm in so much pain and overly exhausted.
Any advice or words of encouragement would be greatly appreciated. I feel like my mental health is suffering at this point with all of this nonsense.

I_love_minions

Although I don't have lupus or ra, I do have Ehlers Danos hypermobility type which affects my connective tissues and causes joint weakness, pain and fatigue.
I'm sorry to hear you're struggling so much at the moment but hopefully with a diagnosis and support both on here and from your family you'll succeed.

I was diagnosed about 2 years ago and was told I'd probably never be able to run again. I thought that was the end of my fitness and that it was a downward spiral to a wheelchair.

But now I can jog about a mile. I'm not fast, but I can do it and I no longer suffer for days afterwards. Progress was really slow and I could only add a tiny bit extra every few weeks without over doing it.

For me it was all about pacing myself. Gone are the days of pushing myself so hard on one day that I can't move for a week.
I found this website and it made me understand my situation better and stopped me trying to be superman everyday.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I found a small amount of exercise everyday really helped, nothing with impact and stiffness was my warning of doing too much before the pain set in. Swimming is really good as the water supports your body weight and relieves the pressure on your joints for a while. I also love my exercise bike as I can keep it as gentle as I need and I can set a timer so i don't go too mad.

Sleep is also super important as this is when you recharge and recover. Work out a pain management program with your GP or rheumatologist including pain medication and anything else you think will benefit you . Make sure you're comfortable in bed, I was recommended a body pillow which takes the pressure off your joints so you can relax more easily.

Listen to your body, it will give you warnings in advance of doing far too much. Be super gentle and kind to yourself and it will probably take you a lot longer to make progress than you would like, but EVERYTHING is possible. You can do anything you want to
Good luck,