Fibromyalgia is just the most puzzling thing. Yes you can feel "sick." You can actually feel ANYTHING. Here's a list of the ways it has manifested itself over the years to me:
Migranes (daily until I got rid of the glasses), irritable bowel syndrome, irritable bladder, pain in the neck, chest, shoulders, midback, lowback, tarsal (foot) tunnel syndrome, hand and finger cramping, inability to empty bladder, fibrofog, double vision, vomiting, stomach ulcer, and some transient depression.
I have visited opthomalogists, opticians, optists (physical therapy for the eye) neurologists, neurosurgeons, rheumatologists, physiatrists, psychologists, psychiatrists, occupational therapists, physical therapists, chiropracters, family physicians, internists, dermatologists, accupunctureist and a massage therapist. Most have helped some. Many have not. (Especially those one-size-fits-all physical therapists.)
In other words, any symptom could be fibro. Any new symptom that COULD be dangerous should be seen by your medical doctor. Any "fibro" symptom that gets worse instead of better, despite good fibro-care, should be seen by your doctor.
Just use your common sense. And start to feel better, now.
Sorry, Cece, neither Bill nor I have ever known any Vaklyes. We know lots of Vosslers and Eckleys, but no Vaklyes.
Although we moved to the farm in 1972 and are not natives, we know a lot of people. Bill especially. He knows people from his general/masonry contracting, from teaching masonry at the college, and from farming all these years. I met a lot of people teaching in the Allegany ARC workshop and the continuing day treatment center. But I forget names.
Bill and I spent the day working on filling out forms for the state and federal government. (It would help if we knew what we were doing.) Then we got our son's taxes done. I know that there are too many people who don't pay their fair share, but it seems like we're drowning in paperwork. We have to keep track of every mile our farm trucks drive and every gallon of gas they use. We are 3 miles from the PA line, so the powers that be want to be sure that the gas purchased in NY is used in NY and vice versa. Last October we wrote a check for 43 cents that NY would be sending to PA. There was a whole lot of paperwork involved in finding that 43 cent figure.
Maybe that's why my rt. hip is acting up. All this frustrating paperwork and all this sitting-on-my-butt time.
Whatever, the trigger points on the gluteus minimus yesterday seemed to help yesterday. Today it's back to ache, ache, pain, pain. I took an Ambien last night and was able to sleep, but there's so much more to be done. I just hope that this darn right hip does not have to follow its mate into replacement land.
I guess it's time to get out my fibro notebook and see some of the notes I made on this type of pain back in the 80's and 90's. Gosh, I'm glad I started and kept that notebook. It has a much better memory than its author has.
Now, go check YOUR fibronotebook. Don't have one? Start one today. Use any paper that's floating around the house for now. You can transcribe it when you get your real notebook.
Today was another day in the 40's. Tomorrow will be, too--until early evening when it starts to snow. Well it isn't officially Spring yet. When it is, of course, every single day will be perfect--or not.
Today I got reminded how lucky we are here in Wellsville, NY. Not only does our very little town (before cell phones, there were less than 9999 phones with Wellsville numbers) have a pain clinic with a highly skilled and superbly qualified O.D. and some great nurse practicioners, we also have a caring, supportive office staff too. On Friday, my right hip started to hurt. By Monday, it hurt to sit, to stand, to lie down. So I called the clinic that morning. I got in this afternoon. Evidently, something woke up a whole bunch of trigger points on the right glutemus minimus. When I get my routine trigger point injections, they use 25 mg. of medicine for the whole length of my spine from neck to tailbone. Today, I got 50 mg. all in the glutemus minimus. Wow. I'm still going back on Friday to have my normal--non emergency--visit, when I'll get routine spine care and any follow up needed on the glut. min., too.
All of which leads me--finally--to my point:
MANY OF US ARE SETTLING FOR MEDIOCRE MEDICAL CARE. IF YOU ARE UNHAPPY WITH YOUR CARE, IT IS BOTH POSSIBLE AND APPROPRIATE TO FIRE YOUR DOCTOR AND FIND A NEW ONE.
Yes, I know how hard it is to find a doctor who "gets" fibro. It took me 25 years! But, it was worth it. My doctor accepts my insurance. He understands both fibromyalgia and myofascial pain. He is constantly expanding his "bag of tricks" to combat pain. He prescribes any drug he is legally permitted to prescribe in NY. He is not too closed-minded to refer patients for chiropractic care, physical therapy, accupuncture, or any other treatment--even to other pain clinics. And he makes sure his office staff provides a supportive atmosphere for his patients. He even LISTENS.
My hope is that every single one of you will find someone as perfect for you as Dr. Bill Carstens is for me. You deserve this level of care. Don't settle for less.
When I was young and single, one of my favorite jobs was at Rutgers U. I loved my job as a chem. tech., but the grant that funded it was only enough to pay me (minimum wage) and no benefits. I went from being on my parents' health policy to suddenly having no insurance.
I was a nervous wreck the whole 365 days I was without insurance! My days and nights were full of "what ifs." It made me seek greener pastures at a drug company--thank goodness--even though I missed the work itself.
Many young people don't give health insurance a thought--until they get sick. I didn't have FM then, but I made my DH get us insured despite the cost. (I had to quit working at The Pill company to get pregnant. We lost my coverage, of course, and we had to buy our own with DH self-employed. It was hard making those payments--especially in the winter when masons don't really work.)
Everyone needs health insurance. It should be a given for everyone. We are the only developed nation where this is not so. When Canada switched to universal healthcare, there were a few bad years while they ironed out the glitches. Now their system is enough of a success that many US citizens go there for their health needs from doctors to pills.
Obamacare is new. It doesn't cover everything or everyone. My hope is that it will eventually become universal. Then--with a wider base of insureds (all of us)--it should become much more affordable. (That is if big companies don't forbid the government from bidding for services and getting the best deal. In France, they buy each medication from the manufacturer that does it cheapest. Quality is the same high standard in all the European Community markets, so that is not a consideration. Our drug companies lobbied so that Medicare cannot buy meds for its insureds in one big lot--which would have been way cheaper. Then those same politicians who passed the laws that way complain that Medicare is costing the country too much money. Don't get me started!)
So happy I'm insured. So definitely praying that you ALL will be ASAP,
The question is: Does the cold weather make YOUR pain worse? We are all different. Personally, I'm miserable when the temp is higher than 73 or so or lower than 68--inside or out!
If the cold is one of the things that is making your fibro worse, then you will have to find ways to make yourself warm. Use heating pads, layers of clothes (tights instead of panty hose, etc.) and anything else you can think of to try. I sent back a pair of beautiful boots because my feet were cold the first time I wore them outside. The old standbys may not look all that great, but they kept my toes cozy. I don't know about you, but if my hands or feet are cold, I'M cold. I also like the soft leather gloves like Isotoners. The fingers stay warm, but can still move.
And please consider having a warm bath or shower 2X a day instead of once. Your evening bath is a great soother and relaxer (MiMi adds lavender scent to her's. Mmmm....)
I am so sorry that your pain level has increased. Search your life to find out why. Is there a new physical or emotional stressor in your life? My fibro really ramped up following my mother's unsuccessful bout with multiple myeloma. (I spent a year basically commuting 300 miles each way every 2 weeks.) After she passed away, I had to opt for disability. I had abused my body too much for too long.
Other than abandoning Mom, I had no way to remove that year's stress. It's possible that there are ways for you to lower your stress levels. Find them.
There are also little things you can do to add some calm to your life. Listen to YOUR kind of music while in your car. (We live where the radio choices are rock or country. I bought some easy listening and classical instrumentals. Boy do they make a difference--especially in traffic or on bad road conditions.)
When I was a kid, I loved to ride on the tall backyard swing my dad fixed for us. One (previously stressed) day last fall, drivers skirting the local park got to giggle at the sight of a gray haired, overweight 70 year old pumping away on the swing. (Luckily they couldn't hear me reciting John Louis Stevenson's The Swing.) But, silly as it was, it released the physical tension in my shoulders and the emotional tension of a tough day. (I've also been know to sing along--at the top of my voice--with Connie Francis or the Everly Brothers.)
Do some soul-searching and find the things that bring you joy. You have no idea how good joy feels. Yes, you may have to adjust your medications--most of us do every now and then. But no amount of medicine can take the place of a few minutes of silly, outright FUN.
I bet you could make a very long list of all the things you could do 15 years ago, but cannot do now. Putting up with pain is definitely on that list, isn't it?
When you think about it, this makes perfect sense. Your body has been fighting a war for 15 years. It is tired, but it gets very little relief from sleep. Those pains you had way back then are probably still here. But now, there are so many more pains in so many different parts of your body. It's like you are always on guard against the next attack. And it's hard to be on guard, because you don't know where your enemy (pain) will strike next.
One of the big problems with most of us is that we don't listen to the body. Your body just told you it was sick and needed to lay down. Did you lay down? I hope so. Every time you ignore your body's signals (and I just bet that's happened a lot in the last 15 years) you are causing microtrauma somewhere on that poor body. To top it off, you are telling your brain to crank up the pain chemicals over and over again. And that makes the NEXT incidence a little worse. (Who cares that the "experts" say fibro is not progressive. We know they are wrong. We DO hurt more.)
Find out what makes things worse. Either stop doing those things or cut back on them--a lot. (I cannot do repetitive things like vacuuming.) Find out what makes things feel better. Do a lot more of THAT. (I take 2 showers/baths a day and really use my heat packs. This all helps me. You have to find out what helps YOU.)
You wouldn't dream of walking on a broken leg, would you? Your fibro is just as big a deal. Treat it and your body with respect.
Debbie, I am so sorry about the situation you are in. It is horrible to hurt so much. It is abominable that you cannot afford the care you need. Please call your county's or city's social services department and find out for sure whether you qualify for medicaid or some kind of help with your bills. The "income" that most programs count is your "adjusted" income--after you pay your medical costs. That makes a big difference.
I know that if my husband did not still have insurance from where he retired from, our adjusted income (gross minus medical costs) would be awfully close to zero. Between you and your daughter, you must be in about the same situation. And heaven help you if any other family members get sick!
I think you are talking about fibro pain in the muscles that are between your ribs. They are called the intercostals. When they seize up, it feels like a heart attack.
Believe me, I know. It is a crushing pain in your chest, up into your jaw, and down along your arm. Sounds just like a heart attack, doesn't it? But my pain was all on the right side while heart pain is on the left. I still spent a night in the intensive care/cardiac care unit and went home with a holter monitor. No matter the side, my doctor didn't mess around with chest pain.
Neither should yours--or you. At least at first, you have to find out exactly what is (and what isn't) happening. Once you are sure that it is fibromyalgia, you can take the meds and do the stretches or massages that your doctor finds for you.
As you know, fibromyalgia can get pretty bad. With the right treatment, it can get a good deal better. And once you know from experience that this can happen, you won't panic at every twinge. (That's so easy to do when you're scared.)
So please, start calling doctors, clinics, and anyone else who can help you find the care you need and a way to pay for it. Make this the first thing on your Monday morning "to do" list. You need this for yourself and your family.
It's amazing how we can just go along ignoring the benefits of the things that work in our lives. It's only when they go "poof" that we appreciate them. Whether it's the power going off, the heating system acting up, or the dryer going on the fritz, it takes the lack of something for us to realize its true worth.
What brought on that soul searching? My new dryer. Today I gave it and the washer a real workout. I stripped all the beds and washed sheets, blankets, and quilts. What a joy to make up beds with everything smelling so fresh and clean. What a joy to have a dryer that didn't bunch stuff up--even the quilts. And--at least for now--I am not taking that clothes dryer for granted.
DH told me I bought the Rolls Royce of dryers. I showed him the prices in the Consumer Reports annual review. He declared that I bought a Cadillac of dryers. He read a Sears flyer with a whole page of washers and dryers. He agreed that I had bought a Prius of dryers. (It's definitely an Energy Star model using about 1/2 the electric of the old one.) But I'm sure he'll be calling it Rolls till it spins its last load.
DS spent his second day on the new job at the college's agricultural school. The pipes in one barn burst. Unlike Lou's, these pipes were 3 feet below the barn's concrete floor. Poor John spent the day standing on concrete in a cold barn running a jackhammer. They have to take out the concrete floor and the 3 feet of frozen ground to get to the broken pipes. DS came home plastered with mud and other barn-type substances. He stopped on the way home and got a pair of insulated boots; the old ones must not have been insulated enough. But he came home saying how much he likes not knowing what the day's work orders will bring. The old job had become boring. (Me, I would have hated every minute of his day. But he loved it, and that's great!)
DH slept through all my loads of bedding and the morning and groaning of the bed making. He woke up in time for lunch. He woke up again when DS came home. I think he likes being retired a little too much. But then again, on my bad days, I stay in bed all day too. I just hope he's all right. There's a lot of moaning and groaning going on whenever he turns over in bed, but he says he's all right. Time will tell.
I pushed myself to do all that bedding. Don't be surprised if you don't hear from me tomorrow. That's my usual M.O. I do something that doesn't hurt much when I'm doing it, but I pay for it the next days--or (hopefully not) weeks.
Remember the women's movement? There were strides made. 99% of them were in the workplace. In the home, things are pretty much the way they have always been.
The traditional role for the man is still the breadwinner. The traditional role for the woman is still the nestbuilder. Never mind that many if not most women have jobs outside the home, women still do far more than half of the tasks at home.
Your husband (like most men) was brought up to think that this is the way things should be. We know better. It's up to us to show him.
There was a time when I did all the cooking, all the cleaning, and all the childcare in our home. DH worked long and hard outside the home. Then I started college. Hubby took over a lot of the afterschool time with the boys. I started teaching, and my position ran the full year--not just the traditional school year. DH started doing the vacuuming. As my fibro got worse, he took on all the housecleaning that gets done at our house.
We are now in our 70's. On bad days, DH cooks dinner. On most days, I do. We shop for groceries together, but when it comes time to stand in line at the checkout, I go sit in the car because I just cannot stand without pain. (I can walk, but I can't stand.) To be fair, I am the one who always wipes her feet before she enters the house. My boots come off at the door. I still do more than 50% of the "women's work" in our home. I just don't do it all.
Your husband has just seen what happens when you cannot do any of the chores he took for granted. He got a taste of what his life would be like without your help. He probably has at least a little better idea of how much time and effort you put into making your house a pleasant home for him to come home to.
This is the perfect time for you to let him know that your current workload is just too much for someone in your physical condition. You really need some help around the house. What does he think is the solution? (Will he hire you a cleaning lady? Probably not.) Your children are old enough to have regular chores. (Get hubby on board with this. Kids listen when Dad says to "just do it.") And, of course, it would be a big help if your husband were cooking dinner while the 7 year old set the table and the 10 year old threw a load in the washer.
At first, there will be stubborn resistance. There will be a lot of "show me again how to do this." Things won't be done to your satisfaction. Try not to re-do them. (If you have the energy to re-do a job, you could have done it yourself--in THEIR dreams. If you re-do something, you will undermine the new worker's confidence in a job well done. And you won't have your before dinner rest time.)
As someone who has often not had the energy to eat dinner after she spent all her oomph on cooking dinner, let me tell you that your home will be happier if everyone does the tasks he or she has the time and ability to do. You are not the only person living there. You are not the only person dirtying the house. You are not the only person eating. Why are you the only one cooking and cleaning?
A true man is a partner. Teach your husband to be one.
These are some of the things I did when I went for my judicial review--and won.
I dressed clean and neat but not fancy. I wore low-heeled shoes. My hair was air dried, not styled.
I brought a bag with my current meds and another with all the ones I stopped.
When I needed to change position, I did--including a walk around the room as needed.
I told the truth. I didn't exaggerate my disabilities or downgrade them either.
If you have to go to the bathroom while you are waiting for your hearing, go. I was nervous and made 5 or more trips to the ladies room in one hour. The lady who wound up being my judge saw me get up and go all those times. (What job lets you go 5 times in an hour?)
All of this helped. There was visible evidence of the way my life really was. Healthy people don't take all those meds. (The judge checked the labels to see that they were all mine.) They don't usually go someplace "out" with no makeup. They don't look and behave sick.
Just be your normal, real self. Your life has changed. It should be self-evident. If you need a special pillow, bring it. If you use ace bandages or braces, wear them under your clothes, but wear them. They won't scream (think the neck brace in "Erin Brokovitch) disability, but if you have to, you can show them to the judge.
This is your money that you contributed to the system. You are not asking for a dole. You are asking for money to live on--money you deserve.