Fatigue is waking up (if I was lucky enough to get any sleep) tired. Fatigue is not having the energy to do the things you need to do or the things you want to do. Fatigue is having one of those rare good days and suddenly having every bit of energy drain away.
One day I snagged the very first handicapped space in front of Target. I got out of my car, walked across the roadway and up to the big, red doors. And couldn't go on. I just could not walk another step. Luckily, an employee noticed and brought me one of those motorized carts. I honestly didn't know whether to use it to do my shopping or return to the car. Yes, there was pain involved, but the really big thing was fatigue!
I loved teaching too--handicapped adults at the sheltered workshops and continuing day (psychiatric) treatment centers in both Allegany and Cattaraugus counties in NY.
Unfortunately, many of the rheumatologists don't want to mess with fibromyalgia. They really can help those with some nasty forms of arthritis. Of course, that makes them feel good. We are just a reminder of the fact that modern medicine still has its failures.
I love my Flexeril (generic is cyclobenazaprene). It can sometimes help a small, new ache from becoming a big new flareup.
Be thankful that your primary is interested in treating and helping you. Many of us here are still looking for someone to oversee our care. The specialty does not matter as much as the willingness to work with you and try different approaches until you find something that works. And then YOU will change and need some tweaking of the medications again. That's just the way fibro is.
I guess the moral of the story is: always check out any new and troubling symptom, but don't be surprised if "it's just your fibro!"
In the past 42 years I've "enjoyed":
difficulty adjusting to temperatures above 72 or below 68
metatarsal pain (ball of foot)
and much, much more.
As I said, ain't we got fun!
Sorry about all the pain and fatigue. Practice your patience. Do some meditation. Breathe deeply. Take warm baths. Visit the toolbox to your right. Whatever works for you. And, on your next doctor visit, ask for a Rx for "rescue medication." This is a medication you save for the very bad times and have on you at all times. You never know when you'll need it. Sometimes, just knowing that you have it, takes enough of the pressure off to make things bearable. But you have to save it for the really bad--level 8 pain--times.
But, if this were my grandchild, I would be so glad that there was such evident security in place to protect her. It is a pain for all of us honest, law-abiding people, but it protects us all from those who are not.
My SIL got me the nicest thing. It's a Totes brand tote bag that can zip into itself. All packed up it's about 5" X 6". Open, it can carry a week's worth of casual clothes (a bit less if you're going the heels and panty hose route). It's a lightweight navy synthetic with both carry handles and an adjustable shoulder strap. Because it's so floppy, it fits in almost any space from auto to airplane.
I have a slightly smaller one in black that I fill with everything I need at the pool or beach from towel to suit to sunblock to flip flops to hair care after the chlorine (shampoo, conditioner, comb, brush, small hair dryer). It's always packed and ready to go. It fits--fully packed--into the larger navy bag for a summer trip.
Semilly, does your job have short term disability coverage? This is a way (with just an Rx from your doctor) to give yourself a break from work and time to really focus on WHATEVER it takes to get your fibro under control.
I used my time for aquatic physical therapy. The therapist is in the warm water pool with you and helps you build up a suitable routine of stretches and/or exercises. After your course of therapy is over, you can hunt out a way to continue on your own at the Y or another site after work. During this same 6 weeks, I was getting trigger point injections every week. We played around with new meds, too, since all my medical appointments were midday with time to get over any new drug's "hangover" before I had to drive.
If you work for a large company, it may be worthwhile to meet with the company's nurse and/or doctor. Employers put a lot of money into finding and training staff. Good companies will work with you and help you find ways to make your job less physically demanding. (When I was a lab tech, it was as simple as getting an adjustable stool with a padded seat and back to replace the old, hard metal one.) Then the company will be able to keep you on your job. And remember, you are a valuable asset to your company.
I hope you have learned to let the housekeeping be something you do if and when you are up to it--not something that YOU have to do at all costs. If you dust, sweep, or vacuum today, the house will still be dirty tomorrow. If you do those chores on a flare day, the flare will still be there tomorrow. Cook double meals on good days, and freeze the rest. Dig out the crock pot. Throw in some carrots and scrubbed spuds under your meat, and you'll have the whole meal ready when you get home--just stir in some thickening for the gravy while you cut the meat.
You have to plan on the fact that there WILL be bad days. Do what you can comfortably do on the good ones. Rest as much as possible on the bad ones. (You'd be amazed how refreshed a 1 hour lie-down after work can make you.)
In other words, Semily, listen to your body. It knows what it can and cannot do. So must you.
I think that at 71 I'm probably the oldest one here. Since my fibro began in 1972, I've probably had the most experience with it.
Let me tell you what the state of fibro research was like then: nonexistent. My doctor told me to take 2 aspirin every 4 hours, setting the alarm clock so I wouldn't miss my middle of the night dose. He said I would know I'd reached the correct dosage when my ears started ringing.
Today, we know that fibromyalgia is a very complex disease. It needs a many-faceted approach to treatment. Some of us do well with physical therapy. Some of us are hurt by it. Many of us need the assistance of a behavioral therapist to find ways to cope with our new, less than perfect lives. Some of us are doing just fine without it.
It's the same with medications. Some of us have found--many of us the hard way--that we just cannot use any. Others get unbelievable improvement with them. The good news--again--is that there are now many different medications and even many different types of medications that have the potential to help you.
In the past 42 years, I have tried every one of the "latest fibromyalgia treatments" as it came out. Because my most noticeable problem is spinal pain, I have had an electronic nerve stimulator implanted--and subsequently removed. For 15 years, I got nerve blocks every 3-6 months. In the past year, I have had radio frequency ablation, first on the right side then on the left. Before RFA, I was unable to stand for 5 minutes without pain. Now, I can stand for 30 minutes without back pain.
In 1972, it would have been unthinkable for those of us with chronic pain to be prescribed opiates. These strong painkillers were reserved for those with cancer and/or the dying in fear that we would become addicted. I'll never forget the day in 1997 when I applied my first Duragesic (fentanyl) patch. The doctor said it might take a day to feel the full benefit. Maybe so, but in 20 minutes I had this wonderful sensation that "everything would be all right." Today, my doctor alternates between these patches and oxycontin to avoid having to increase the dosage as my body gets used to one medication.
But the best news is that Big Pharm has brought us Lyrica, Savella, Neurontin, and a host of other medications targeting our fibro. And they are still working on others that may be even more effective and/or less apt to cause side effects.
If you are newly diagnosed, thank God that you are hearing this news today. There was never a more promising future available for those of us with fibromyalgia. If you are an "old timer" like me, I hope your current regimen is working for you.
But perhaps it's not. You may be doing the same things you did 5 or 10 years ago. They made your fibro a little more tolerable, but life is not exactly great. Please find a neurologist or rheumatologist, or pain specialist, or other doctor who is willing to work with you. Explore the options open to you. There may be a treatment or combination of treatments that can make your life. . . . well, not great, but better. And know that, if this is not true for you today, it could very well be true tomorrow.
Today was just as damp, but everything is better. I jumped the gun with the lower dose pain patches. A quick call to the pain clinic and I was able to go back on the old 25 mcg./hr. dosage. Like MiMi I was able to sleep last night! Today I was able to change/wash the sheets, make a big pot of chili, grocery shop, and pay the monthly bills! There was a little pain by supper time, but what a difference.
Lou, I envy you the new kitchen, but, like you, I'll have to get a new microwave. The turntable just stopped. Something happened to the spindle that the whole thing turns around. It's probably a $2 part, but nobody takes microwaves apart to fix them--at least I don't know of anyone who will do it.
DH was super busy today, too. He moved 50 big bales of hay off the field. This is poorer hay that we sell to people who have goats. They love that hay. Our cows turn their noses up at it. You can almost see how huffy they get if DH feeds them the inferior stuff.
We were watching "An American in Paris" an hour ago when our housecat Fritz started chasing a bird around the house. Unfortunately Fritz caught the starling before we could rescue it and throw it outside. Now we're trying to figure out how the darn thing got inside. Quite a mystery.
I still think our elder son is getting engaged. You always know when your kids are hiding something. You can usually tell whether it's something good or not. And this would be a wonderful secret. The girl is so nice. And, unlike me, she fits right in on the farm. Time will tell.
Here's hoping that all of us here have a great, pain-free weekend. And remember to do something each day to make yourself smile.
Gosh, I hope you are all doing better than we are. You are good people who deserve better things.
Well, it's here. Cloudy, damp fall--and my annual Fall Flare. It's so disappointing after the R F Ablation, and the hip replacement, and 2 months of no flare-ups to have the same old, same old back. I know I should be thankful to have had those 2 wonderful months, and I am--truly. But I am still so depressed at the thought of the chance of being in flare until the first snowflakes and crisp, dry, winter air. The flare came before the mood, as I am taking daily walks and enjoying our beautiful hillside. It is in peak color now and just glorious.
DS and his current GF are getting closer. They took both families out to dinner Saturday, and I expected to hear an engagement announcement, but none came. There's something going on there, though. Those two light up with an inner glow when they are together. Time will tell.
Our younger son is visiting. When he goes back next Thursday, he will be moving from his group home to a supervised apartment. He's been waiting for 2 years, so he is very excited. Hopefully, he will call home or ask for help from his staff if he gets self-destructive thoughts--before he hurts himself again. He lost part of his esophagus and stomach when he drank toilet bowl cleaner. Next time he might not be so lucky. If you pray, please pray for him. He needs it.
Here in W NY we are having Indian Summer weather although we haven't had a frost yet. Warm, sunny days with bright blue skies are followed by cool, crisp nights. DH asked if I wanted a fire last night, and like a fool I said no. (It is supposed to be 75 today.) It's almost 11 this morning and still sweater weather--inside the house.
Last week I spent $300 on repairs to the Caravan with the news that it needed another $300 ASAP. I've been itching to buy a new car. $300 is one month's payment for the Honda Fit we got Monday. Wow! I can't believe all the bells an whistles that are standard on vehicles today. Would you believe a backup camera? A warning light if the tires need air? A message when the car is halfway to needing servicing and another when you should probably make an appointment? And this is for a tiny Honda Fit! It's quite an adjustment for me, since this is our second Caravan. However, I am a little person--not like on TV, just 5'2"--and it is so nice to be able to reach all the controls without having to r-r-reach.
We picked up the second DS while we were in Rochester on Monday. He likes the new car, too. Wants us to go to town every day. Not going to happen. (Even though the energy lights surrounding its gauge says I'm doing things to save gas all the time.) I drive 10 miles to town when I need to, not when I want to. DS is used to going places all the time in the big city of Rochester, NY. He forgets that life on the farm is a little different.
Still have mild pain in the back at chest level. But it is such a relief to have so little pain! God bless the pain clinic and radio frequency ablation! I thank Him for this boon every day.
It is my sincere wish that every one of us here can find a time and place with minimum pain. If you are not there now, keep working on it. It took me 40 years, but for most of those years the tools just weren't there. Do not settle for half a life. Find a way to live yours fully!