Conflicted.

CharlieICURN

I'm having all sorts of conflicting feelings about things at the moment.

So I am someone that suffers from pretty significant chronic pain. I was recently diagnosed with fibromyalgia but I'm also being worked up for autoimmune issues. Right now my horrible flare up is in both of my hips and my shoulders. It's excruciating.
I figured that being more active with help pain management. I also figured it would help me sleep better. I purchased one of them Fitbit things which I think is great because I WANT to get out and move around and meet all of the goals with it. I started wearing it yesterday and did really great. I walked through the pain in my hips and was pretty fatigued by early afternoon. By 5pm I couldn't keep my eyes open for the life of me and had issues with significantly increased pain.

Today I woke up at 4:30am. According to my fitbit, and I'm not sure of the accuracy, I slept about 4.5 hours and most of it seemed pretty restless.
Which I suppose is the norm for me. I couldn't fall back to sleep so I just got up and started the day. My hips were really in a lot of pain but I decided that I should go for a walk, get the heart rate up, and maybe with time I'll start to feel less pain with activity. I walked around the neighborhood and I have to say it was super difficult. About 15 minutes into my walk I felt like I had broken glass in my hip joints. I'm not sure if my heart rate was up from pain or from the increased activity at that point. I made my way home (walked briskly for a total of about 30 minutes, then had to slow down because of pain). Now I'm suffering. Oh my. Like just deep horrible pain in the hips and I cannot get comfortable.

So now I'm wondering what to do. I don't want to make excuses for not being active anymore. I'm tired of sitting around and using pain and fatigue as an excuse to not move or exercise. I've read from so many sources how exercise and staying active is beneficial to chronic pain sufferers, beneficial to those with sleep disorders, etc., and that a sedentary lifestyle is a terrible choice to make because it will only increase these problems.
But what the heck can I do? Like holy crap I'm legit suffering today and it's not just muscle soreness from exercise. It's deep, life-altering, unrelenting pain and I just am at my breaking point. I'm waiting for all of the labwork to come back before I get an actual diagnosis, and my follow up with the rheumatologist isn't until August 25. My husband thinks I should wait until I see her before I start more activity but I don't want to sit around not moving for two more weeks.

2snakeswoman

I think you have to be really gentle with yourself during these flares. There is a yoga routine for people who are disabled or injured on YouTube; you might check that out. Most of it is done lying on your back. You may not burn a lot of calories, but you will be improving your range of motion and joint strength.

kchartinc

Until you can get advice from your doctor, maybe try some light swimming or gentle yoga. At the very least it might help you relax!

mbaker566

you need to take care of yourself. sometimes that means rest. sometimes you need to ask yourself if you want to hurt or hurt and get a little healthier. it depends and only you know when it's ok.
gentle walks, gentle yoga. i have found that moving and stretching helps me when i'm in pain.
i have an autoimmune and myalgia as well. i usually do aerial yoga and i run (very very slowly). with medicine and healthy eating and exercise now i can do more usually but i still need rest days-today my neck and back are seizing up on me.

gillie80

you defo need to take care of yourself first. how long ago were you diagnosed? do you have any prescribed pain meds? i've got lupus, focused in my joints and if i'm sore i dont exercise. you could make yourself worse. you'd be best waiting until your flare passes before doing impact exercising, even walking. if you've got a pool nearby, try swimming until you see the doctor again; it takes the pressure off your body and still burns calories.

don't beat yourself up for not being able to exercise through a flare, i don't either though i dont flare very often these days. until you get a proper diagnosis, be gentle with yourself.

Lizzy622

Yoga is also my suggestion. another thing I have read is diet does play a part. Pain is due to inflammation and we can control that at least partially with diet. You may want to map out what you ate before a good day and what you ate before a bad day and see if there is a pattern.

pylofm

Do what you can, where you are with what you have.... Listen to your body... why not just do a little.... you pick what it is.... then do exactly the same tommorow..... if for some reason yesterdays 'workout' was too much...half it today, perhaps take longer to do whatever it was...... And don't beat yourself up .... any progress is progress...accept that all great things are just millions of great little things :-)

CharlieICURN

gillie80 wrote: »

you defo need to take care of yourself first. how long ago were you diagnosed? do you have any prescribed pain meds? i've got lupus, focused in my joints and if i'm sore i dont exercise. you could make yourself worse. you'd be best waiting until your flare passes before doing impact exercising, even walking. if you've got a pool nearby, try swimming until you see the doctor again; it takes the pressure off your body and still burns calories.

don't beat yourself up for not being able to exercise through a flare, i don't either though i dont flare very often these days. until you get a proper diagnosis, be gentle with yourself.

I've had symptoms for years and had been dismissed by pretty much every doctor I saw and was told I was depressed. Finally I saw a rheumatologist last week when I started having trouble walking because of pain. My mom has RA and my aunt has lupus and they were both diagnosed around ages 29 and 30. I'm 31. The rheumatologist diagnosed me with fibromyalgia at that point and is testing for lupus, RA, and what looks like every immune test known to man. My WBC has been elevated consistently for almost 4 years and the hematologist i saw believed it was from chronic inflammation and recommended seeing a rheumatologist.

I did try going for s swim in the pool yesterday but the water was too cold and it made me really tense up.

FitOldMomma

Finding exercises that are easy on your joints would help. When I started out (March 2014) I could barely walk. I need a knee replacement due to osteoarthritis. I would have flare ups of bursitis in both hips and had chronic low back pain due to my morbid obesity and no core strength.


Getting into a swimming pool saved my life. Nearly zero impact on my joints and it's a serious calorie burner. Once the pounds started coming off the pain eased up some. As I slowly got stronger I added different activities- a recumbent bike at the gym is wonderful for people with knee or back pain. Same with the elliptical...very gentle on the knees and hips. Finding an activity you can ease into would definitely help you. Chair yoga is another great exercise nearly everyone can do...check Youtube for videos.

I also have an auto immune disorder- psorasis. As one poster above mentioned-food choices can truly help with keeping inflammation down. I finally ditched nearly all processed foods and eat tons of veggies and healthy fats and very little added sugar. My psorasis plaques have cleared up nearly 75% and my pain levels have plummented.

Keep trying different things until you find what works for you. Every body is different, but all bodies benefit from healthier eating and gentle exercise. Don't give up.

Good luck.

Sarc_Warrior

I'm a spoonie too. Recently diagnosed with sarcoidosis in my lungs. It's been a tough 8 months. I'm sleeping 5 hours at the most. Add me if you want.

chrissygbulldog3

I have MS. Some days it is really hard to get around and even on good days, I have balance issues. I lost weight doing this before with almost no exercise. I got overconfident, slipped back into bad habits, and am now recommitted. You have to pay really close attention to everything you eat. You can do this. If you don't have a good balanced diet, you will just make yourself feel worse.
Chris

CharlieICURN

Thank you everyone for the advice.
I'm thinking of joining a YMCA near my house so I can use the pool there since my pool isn't heated and that definitely sucked swimming in it pain-wise.

I've made a lot of changes to my diet to eat healthier and watch my caloric/macro intake.
This pain has actually been my motivating factor to lose weight. My joints may not feel great at 145 lbs but they'll feel better than at 200 lbs.
This is just so exhausting.