Welcome to the Group.

Dr.'s have those systems in place so that pain can be measured equally by everyone. The other option would be to keep a pain diary each day and take that to your appointments. Pain Management is pretty much that, Management....it's not Pain Go Away. *smile* We have to find a number of Pain that we can live with and that's the goal. Mine is a 5, I can function, work, deal with my sons, etc. if I keep my pain at 5 or less.....so that's what my Dr. and I work towards.

As for exercise, nobody likes it but it does make a big difference in keeping your body loosened up, relaxed and give you more pain control. Dr.'s don't expect you to be at a gym 4 hours a day, but taking a walk a couple times a day and have the kiddo's walk with you, or working in a pool, which is really good for us, as it takes all the weight away from achy joints and muscles, gives us the benefit of exercise without the pain. Exercise also keeps your heart and blood pressure happy and healthy...the meds we take, the stress of living with daily pain, all of that can be pretty rough on the heart and blood pressure....gotta keep the body as healthy as we can.

Try not to stress over what's happening too far in the future, taking it a day at a time, enjoying your kids along the way and just live your life as it comes. Its stressful enough, no need to make it more so by worrying over things way in the future that are beyond your control. Give yourself permission not to worry about that.

Take care and hope you find some friends here in the group

Kat

Thank you for your response! I guess maybe that is what I need todo. Find a pain l can live with and try to manage that. It is hard because my pain can go from a three to a seven in the matter of a hour depending on what I am doing.

I hope to find some friends that understand and do just think I am crazy.........

Hello.
You are not crazy. You are in pain & you are tired.
I have Fibromyalgia. Officially diagnosed in 2003 but have had it most of my life. Just didn't know what it was. I have CRPS, formally known as RSD, in my right foot & leg. Depression & anxiety & PTSD.
I take Pristiq, Gabapentin & once a day medical marijuana.
When I am able I walk around the local grocery store, library- places like that.. Ti begin with, park as close to the store as you can. Go inside & stroll around a bit, look into a magazine that interests you. Check out whatever interests you. Walk back to car. Go home & rest. Always pace yourself. Even at work. Take full advantage of your legal rights to breaks. Go to break room & rest. Learn to meditate do you can unwind. Get fresh air & Sunshine. Take vitamins & minerals, drink lots of good clean water, eat as clean a diet as possible. Avoid alcohol, caffeine, cigarettes, sugar, white bread, white pasta-any type of food & drink that causes stimulation of the nervous system. Do something that you enjoy that isn't physically taxing. Read, work crossword or jigsaw puzzles, color in coloring books geared for adults, listen to soft music. Sit outside & marvel at the true wonder & beauty around you. Find a way to sleep better, this is SO important These things won't cure you but they sure helped me.

I don't smoke pot, I take part of an Indica marijuana edible at bedtime. Helps me sleep, knocks the pain down, stops the spasms. I live in Colorado so it is legal medically as well as recreationally.
You do find a new normal.
Take care. Gentle hugs.
Tracy

Oh, my sister's sister in law has Lupus. She takes Low Dose Naltrexone & it really helps her. You can't be taking opiods though as Low Dose Naltrexone will cause withdrawal symptoms. Gentle hugs

Also, laugh. I watch sitcoms. Frasier is a favorite. Anything to get you laughing. Find ways to distract you from the pain & stress.

Nobody here will think your crazy, that you can be assured of. Now Tracy can be a bit Crazy, lol, but she's good people!!!

Thanks guys! I have a question what you do all do for morning pain.... My is at its worst in the morning can hardly get out of bed

Morning pain is hard for me. I have Rheumatoid Arthritis, its very bad in my hands and the first hour of waking for me is a nightmare. My fingers are stiff, hot, swollen, and burning...it lasts for about 45 - 60 min. I have to lay in bed and slowly work them, bend them, get 2 working so I can massage the others. I have growths inside on all my finger joints and on the outside what we call "alligator skin" growths, hard, thick patches of skin covering the growth on the inside of the joint. It doesn't like to bend...but I just have to work it. I also don't have many fingernails, and my cuticles and such swell, rip and tear, they are usually hot and swollen when I wake up and have to be massaged to get blood moving in my all my fingers and things calmed down so I can get up and dress. My son generally has to button my jeans and any button down shirts I wear because the fingers don't work that well for a few hours. I wear braces on my hands to drive to work.

I also have Elbow, Knee and Hip Joint issues: Rheumatoid Arthritis, Advanced Osteo Arthritis and a Degenerative Cartilage Disease, so while my hands are getting moving i'm also having to move my legs and getting them to bend in small bits at a time as pain allows. I only sleep about 3 - 4 hours a night. My hands stay straightened out and wrapped in heating pads while I sleep but as I fall asleep and relax, they curl up like bird claws, as this happens the pain is intense and wakes me up, so I have to straighten them out and put the heating pads back around them, I do this about once an hour each night while I sleep. My body does not move while I sleep, hips, knees, don't move...the pain is wicked, and I somehow taught my body years back that it does not move when I sleep. So in the morning I have to get my hips and knees/legs/ankles moving, bending while i'm working my fingers/hands/elbows. My feet/knees/legs are hot and swollen in the mornings this calms as I get them moving and blood circulating.

It takes me a good hour and a half to 2 hours to get to the point that I can get out of bed and stand up and walk without falling over. There is one scenario that trumps all of this, if I wake and have a Migraine....I try to limit opening my eyes, I get my meds off my nightstand, take them, I send a pre-saved text to my office and roll over and pull a pillow over my head and wait till the pills knock me out again. My bedroom is completely black, because of the cluster migraines. I also send a pre-saved text to my son that lives with me, as my migraines can cause grand mal seizures and he knows to check on me at lunch and such.

Morning is hard for many people in Chronic Pain. I think we all have our own Routine that gives us the ability to get out of bed with the least pain possible. Sometimes escaping the pain isn't always possible, sometimes we just have to push through in order to get up. I have the same increase in Pain at the end of the day and have issues with all the same body parts when I go to bed. I'll use more of my Break Thru meds at night if I need to, as I'm just going to bed. In the morning it's not an option because I'm getting up, getting ready and driving to work. Honestly if I didn't work, some days I'm not sure I'd get out of bed....I'd put off having to deal with getting up as long as possible.

I'm also an advocate of very, very scalding hot baths, and use them at night before I go to bed. They tend to basically boil my joints and make them kind of numb, if I can sit in a scalding hot bath for 30 minutes or so, then get straight into bed with my heating pads, I can usually go to sleep a little less painfully.

Sorry I don't have more groundbreaking answers for you.

Take care,