I get the lidocaine (nerve blocks) every 3 hours in my low back. They seem to have a 90 day warrantee. And watch out on day 91.
I did very well with the trial of the electronic nerve stimulator, but the implanted one was too low. It did not cover the pain at waist level where mine is worst. After a year and a half, I had mine removed. If the placement had been correct, I would have been very happy.
Is there some way you could trade services with someone else for your medical rides? I used to trade babysitting with a girlfriend on grocery days. I shopped Thurs. She shopped Fri. and our kids got to play together. Maybe you could watch a friend's little ones in exchange for your rides. If you are a good cook, maybe you could fix someone's dinner (her groceries) in exchange for a ride. It's the old barter method. It worked during the depression. It ought to work now.
Only those of us who have been there know what you are going through. It is a trial. I am so sorry that you are dealing with these money issues along with the fibro. It's a double whammy.
It was down to 13 again this morning. As you said, MiMi, the last for a few days. Unfortunately, it will be showering (but thank goodness not snowing) when I pick up our younger son in Rochester on Friday. Gosh I just love driving on city interstates and having my windshield perpetually splashed by other vehicles.
Tomorrow DH and I will start the day by going upstairs and stripping the beds for DS AND the 2 hunters who will be arriving Friday night. They are boyhood friends of DH, but they have the all consideration of slugs. They would have showed up on our doorstep with no warning at all if DH hadn't called to see if they were coming. I don't know about you, but I would not dream of driving 300 miles to visit someone without calling to see that they would be home. And for these oafs, I get up and fix breakfast so they can be in the woods before sunrise!
Went to visit our older son's girlfriend today. Gosh I like that young lady. She has made her apartment into a home for her daughter and her--and done it on finds from the Salvation Army store. One thing for sure--she won't be the kind to squander our son's hard earned paycheck. She appreciates all the little things he does for her. It is a joy to see them each trying to do little thoughtful things for each other.
It will be interesting to see what effect the inclusion of her 16 year old son (who wanted to finish his semester at his old school and stayed with relatives) will be on this happy mix. Some kids are so great, and some of them can be nothing but trouble. Time will tell.
Anything new on the grandbaby front? I still maintain that dear child will emerge just in time to postpone your Thanksgiving dinner. (My sister did that to my 3rd birthday. It would have been my only birthday party to date. I know whereof I speak.)
There you are. The love of your life is beside you. You know a little lovemaking would be a good thing for both of you.
BUT. . . .
So much of you hurts that it takes an awful lot of very gentle caresses and cuddling to get you really in the mood.
OKAY. BUT. . . .
By the time all this gentle, sweet time has gone by, you are so exhausted that the idea of spending another minute not getting into the one and only position you can maybe, maybe fall asleep in.
AND IF YOU DECIDE TO CONTINUE THE INTIMACY IN SPITE OF YOUR FATIGUE. . . .
You know perfectly well that one of those "gentle touches" is going to be in the wrong place or just too hard. And suddenly the pain machine will kick in. Let's face it, there's no way you will get to the end you were hoping for. The best that can happen at this point is for your partner to enjoy himself while you try to please him.
An, my husband and I have been married for 46 years. Fibro has been in our marriage bed for 41. It takes a very special partner to accept that there will be a lot of dry spells in your lovelife.
You can help nurture that partner by reminding him of how much you love, respect, and admire him. On your good days, be sure to pull out all the stops with an enthusiastic round of lovemaking--black lace nightie, candles, and anything else that works. If there are children in the house, send them to grandma's or that girlfriend you swap babysitting with.
If you make sure your mate knows how much you love him and how much of an effort you put into pleasing him on the good days, somehow the bad days are easier to take.
I truly hope that some of this helps. Fibromyalgia robs us of so much of our lives. Don't let it remove the intimacy from yours, too.
Dr. Devin Starlanyl, in her most recent book, says that the current thinking is that people start out with myofascial pain. If it is not treated, you get new pain areas, they become chronic, and THAT is fibromyalgia.
At least that's this year's version.
My neurologist (the great one who has since left the area) told me that he believes future detection methods will establish fibro as a milder (!) form or precursor for multiple sclerosis. He found so many similarities in the two illnesses that he thinks they are 2 sides of the same illness.
23 years ago, when I was finally diagnosed, we were told that fibromyalgia is not progressive--that it does not get worse. How could anyone go for years with practically no real sleep and not get worse? Dream on. (Like I wish I could do!)
If you can scrape up the money somehow, one treatment that helped me a lot was accupuncture. It took away my low back pain for 2 days straight. This was a major miracle after 30 years (now 41) of constant pain. I had to stop when the scalp where the good treatments were became sensitized. It hurt to shampoo and to comb or brush my hair. That's worn off now, and I would go back, but the accupuncturist has left the area.
Go to the library and borrow books on stress relief and other self-help techniques. My favorite is Managing Pain Before It Manages You by Margaret A.Caudill, M.D., PhD.
One word of warning: please do NOT try any technique that asks you to tense up before you release. Too often, we have trouble un-tensing. You can just omit the tensing part of the exercise.
Some people think of these books as buying into the old "it's all in her pretty little head" theory. Not so. The very best hospitals around the country include these techniques in a comprehensive treatment plan. Some of the ideas will seem weird to you. Skip them and try the ones you think you could benefit from. Pretend you're in a cafeteria. Pick and choose.
I do hope that some of the ideas you get here can help. As with every other facet of this illness, you will have to try it to see if you like it. Good luck!
I am so sorry about your job. It is a major letdown to have to give up such an important part of your life. Every day I mourn my job teaching handicapped adults. It was teacher heaven, but I could no longer do the job. Like you, I was concerned about the days when I made mistakes--transposed numbers, blanking out in the middle of a sentence.
Even though I no longer teach, I keep myself and my credentials current. I visit the library and devour anything scientific. (My original certification is in Chemistry, Biology, and General Science.) I read on those nights when sleep just doesn't come.
You would think that after 41 years with this condition, I would know it all. Not on your life. So, here I am at 70, checking out the MedLine website at least once a week reading at least the abstract of any new fibro study. (Yes, it is easier for me to follow along than it might be for some of us because of my background, but we all have to learn as much as we can.)
I check into the drug trials too and willing to travel 100 miles to participate if necessary. It's one way to help all of us. I am looking into donating my body to a medical school where fibro research is being done. Whatever is left to cremate will be spread on our hillside and planted with spring flowering bulbs. They represent the promise of new life to me and will bring joy to those who pass by.
And, of course, I try every new drug as it comes out. My pain doctor is right on top of things. I tried an (implanted) electronic nerve stimulator which did nothing for me and has been removed. I had a trial radio frequency ablation and am being scheduled for the real one.
Even if you cannot lead the life you once dreamed of, you can still keep fighting. You can do everything possible to make your life with fibro a little better. You can pass on the things you learn. You can try to make the world a more joyous place for yourself and for others. You can make a difference.
At least that's how I have been able to live with this dear, sweet, wonderful dragon we call fibromyalgia.
If you are not using a pill organizer, now is the time to start. As Cory has attested, it is very important to remember to take your medication and take it on time.
My husband has 18 different medications that he takes at different times of day. He'd never get it right if I didn't fill his organizer every Wednesday.
Depending on how many times a day you have to take medications, you can get these containers for from $1 up to $20 (for the really big one) at your pharmacy. Put your supplements and vitamins in there too. It not only helps you remember to take them, you can tell at a glance WHETHER you took them already or not.And doing it all one time a week saves a lot of energy, too.
DH and I each have 2 of them. His are blue, mine are pink. The extras are for if we'll be away past one week. I put our names on them in magic marker on the front and address stickers on the side. I added our phone numbers too, in case we ever misplace them.
With fibro, you may not know where it will hurt when you wake up tomorrow, but you sure know it WILL hurt.
It's wonderful that your Trazodone is helping. Some of us go for years trying to find something that makes just a little difference. So try to be thankful--just a little bit.
If you have sleep apnea, then your airway is closing during the night. You have to gasp for breath. This makes you wake up or at least interferes with deep wave sleep.
Have you tried those Breathe Right strips from the drugstore? They are not a CPAP machine, but they may help to keep your airway open. Another thing to try is to sleep on your side, not on your back. You know that position they taught you for your back when you were pregnant. On your side, with a pillow between your bent knees. I just learned one more adaptation. Place one more pillow where it will support the arm on the side you are not laying on. The pillow between my knees is long enough--or I'm short enough--so that it also keeps my ankles from banging together. It's hard to snore or close your airway when you are on your side.
I hope some of this helps you sleep better and wake up with less arm pain, too.
You know perfectly well that that dear child will begin to arrive just as the family is siting down to Thanksgiving dinner.
And everyone who has gathered to celebrate the holiday with you will hopefully be around to greet this new member of the family when she comes home on Friday (or Saturday depending on how long the little angel takes to arrive).
Whenever this happy day is, please be sure to let us know about baby and mother as soon as you come down off the clouds.
One thing that has helped me during this season is to bring the "Christ" back and remove the "X" from Christmas. We are not a very religious family, but we are grounded in a deepseated faith.
Christmas is not about a tree, or a super clean house, or a bunch of decorations. I doubt that the stable in Bethlehem was any cleaner than the average barn. There were no decorations. Any trees were probably palms.
Sing along with the carols, whether you are in church or at home listening to the radio. While you work around the house (on the good days only), plan some ways to spend this time with your family.
Your puppies will be another joy around the first of December. How sweet. By Christmas they will be staggering around your house and starting to explore. New life is a constant reminder of just how wonderful this world can be. And about that time you will be starting to think about good homes for each pup to find in January.
It seems your next few weeks will be FULL of the joy of life. Lucky you.