Peaches, I'm with you. What happens with me--far too often--is that I force myself to get supper ready then I'm too tired to eat! I wind up going into the bedroom and collapsing. Well, that's one way to lose weight. (But not when I get up a few hours later and grab a bowl of ice cream.)
I'm supposed to cook for myself, my DH, and our older son who has his own home next door but eats with us. Every now and then, (every couple of months) he fixes a meal for us, but it's always something I cannot eat. (He fries everything! ) I have a hard time with fat. It makes me nauseous.
The fatigue is something that cuts seriously into our social lives. It is especially hard when a big event like a wedding requires an RSVP, but you have no idea of how you will be feeling.
Believe me, you are not the only one who has gone to bed leaving her hubby to entertain guests. I stay up as long as I can, but there are limits. Good friends accept this. My dear husband loves company. They love talking with him. They miss me, but they understand.
I think that your children have an inflated idea of what you can and cannot do. Ask them how much they enjoyed company (unless they were bearing chicken soup) the last time they had the flu. Most people can relate to that. Fibromyalgia is like having the aches and pains of the flu forever.
But, sometimes, you can take an early nap before the company comes. If a meal is involved, use your crock pot--with one of those new liner bags. Or have everyone bring one dish. Use paper or foam plates and plastic utensils. Just enjoy the visit without any of the fuss. You can't do this every day, but you can do it when you know the big family dinner would be just too much.
And don't blame yourself for your fibro. Would you blame yourself if you had diabetes? Or rhumatoid arthritis? You are not a shirker. You are someone with a chronic illness. Chronic means "for a long time." I think fibro is forever, but I hope I'm wrong.
I'm so glad that the low dose naltrexone is working for you. I'd read about LDN, but it is wonderful to hear from someone who is getting some relief from it. Anything that can lessen the severity and length of flares is a godsend.
As you know, what works for one person may not work for others. This is what makes fibro so difficult to manage.
You're right about the exciting changes happening in fibro research. It is amazing how quickly the pharmaceutical companies got on the bandwagon. I think it's because there are so many of us. And it's possible that any medicine that helps us may be useful for other types of pain.
Please keep us posted on the pluses and minuses on your LDN treatments. We all need all the info we can get.
Gosh, it seems as if everyone is overdoing the stressors in some form or other. Lou is immersed in her kitchen renovation, Mary is having all kinds of fun (the kinds we pay for later) with her grandchildren, MiMi is really in over her head, and Cory is dealing with both work issues and the fact that a family member has abused trust and stolen medication both from his home and through the doctor and pharmacy.
Lucky me, my only excuse for not posting is that my right hip is screaming anytime I sit or change position in any way. I'm getting an MRI on Friday and seeing the orthopedist next week. Looking at the plain X-rays the arthritic changes seem too insignificant to replace the hip. From the pain level, it seems to be at least as bad as the left hip was when it was replaced in 2005. We'll see.
And I'm getting off my aching seat!
Try to take some deep breaths. Open your bag of tricks. Do the things that you know help you. As for me, the docs added some oxycontin to the fentanyl patches, but the pain is still fierce.
From here, you go back to your doctor and try the next thing. And the next. And the next. Until you find something that helps you. Sorry, but that's the way it is. Back in 1990 when fibromyalgia first got its name a study came out saying how the combination of Elavil and Flexeril was a new, wonderful treatment for all of our woes.
That's what the abstract for the study said, at least. But when you went into the body of the study, you found that 16 % of the patients found at least some relief! 16 %!!!!! Some marvelous scientific breakthrough. And, oh yes, that 16 % got SOME relief.
That's the way it's been all along. And that's why all these big pharmaceutical corporations are still looking for something that does work. Sooner or later, there will be something that works for EVERYONE BUT 16 %. And there will be a lot more than SOME relief.
Until that day, we just have to try each version of what is available. We have to give it a fair trial. We have to let our doctor(s) know what did or did not work. And, unfortunately, we have to be patient.
Personally, I'm running out of patience. But then, I've been dealing with fibro since 1972. I think it's time.
Mama, Mama, Mama, you are not your illness. You are a loving, caring person who is doing the best she knows how to in a bad situation. No one knows how long this will last. You could be a lot better tomorrow--or a lot worse. There could be some wonderful scientific breakthrough next week--or not.
The thing is that you are beating yourself up for not being perfect. How sad. Did you sit down one day and say, "I'm going to give myself fibromyalgia and arthritis so I won't have to work around the house anymore?" Did you do that? No. You got sick. It was no one's fault. It was certainly not yours. Sometimes bad things happen--even to good people like you.
Now, about your house. No one keeps a clean house for her mate or her children. You do it in spite of them. You go around picking up after them. You expend energy you don't really have to spend. Then they go and dirty things up again. Nowhere is it written that you are the only person responsible for the tidiness and cleanliness of your home. You are not the sole dirtier of that house. You should not be its sole cleaner.
Do what you feel you have to. Spend what energy you feel you can afford to spend. But don't ever feel guilty about the things you just can't do.
How many times have you done something when you knew it was too much? How often have you paid too high a price just to have the floor swept or the dishes washed? Floors just get dirty again. Paper plates are not illegal. Save your strength and energy for the things that matter. Read a bedtime story. Give a hug. Find the strength for those. But don't ever feel guilty about the time you did not spend on THINGS. Save your resources of time and energy for people.
Let's face it, Spring and Fall are times of change, and our bodies just don't react well to change. Here in WNY, it is about 80 today, but will be in the 40's tomorrow. Our poor bodies just don't do a very good job of regulating themselves, and conditions like these don't help at all.
So many of us are having so much trouble with weather-related problems. Whether it's wildfires in the west, tornadoes in the midwest, or plenty of rain here in the east, we are all on alert. And that causes our old enemy, stress.
Please try to remember that you are so much more than your fibro. You are a wonderful person who is doing the best under trying conditions. So often, we see all the things we cannot do, all the deficiencies in our housekeeping, our physical limitations, and all the changes that fibro has brought to our lives. All of that is just the outside. The inside is some pretty tough cookies who accomplish an awful lot in this life. We bring joy to our families and to each other. We care for each other. We contribute to this world. We are a force for goodness. The support we give each other carries into our homes and our communities, making this a much better world for everyone. There are some pretty wonderful people here. Be proud of yourself.
Whatever local anesthetic they used Monday while they were injecting cortisone into my right hip has definitely worn off. Unfortunately, the cortisone has not kicked in yet--if it will ever, which is anyone's guess. The result is one extremely sore right hip socket. The whole area from the "cheeks" to the groin and out to the side of my leg is just plain miserable. The good news is that this is probably temporary. I hope. I hope.
I just wanted to say that you are far from being alone. My fibro began with my second pregnancy. The late term backache never went away. My son was up every night from 1 a.m. until breakfast for over a year. As you read more about fibro, you will discover that some of the earliest studies on fibromyalgia showed that volunteers who were deprived of restful sleep for a week--healthy college age volunteers--developed fibro-like symptoms.
That was 1972. Things have not really improved, but I have. It took 18 years to finally get a diagnosis. I guess I was lucky. That was the year that a group of rheumatologists got together and named fibromyalgia syndrome. They diagnosed it as widespread pain above and below the waist and on both sides of the body that has lasted at least 3 months. They confirmed their diagnosis by finding at least 18 tender points. In addition, they noted that there were other symptoms that seemed to occur with fibromyalgia.
Almost every one of the symptoms you suffer from can be linked to your fibro. Of course, since these symptoms can be caused by some nasty illnesses, they have to be investigated. And that's how I got my hysterectomy, gall bladder removal, tarsal tunnel syndrome, and LASEK (for daily migranes caused by the weight of my glasses) surgeries. I don't blame the fibro for the bladder neck suspension or hip replacement (and revision). I do blame it for the multiple bladder infections--treated with erythromycin which caused increasingly serious diarrhea with each treatment until finally I had a toilet bowl full of blood. I blame it for the chest, jaw, and arm pain that sent me to the cardiac/intensive care unit--all on the RIGHT side.
Please ask your librarian to find you copies of Dr. Devin Starlanyl's Fibromyalgia and Chronic Myofascial Pain Sydrome: A Survival Manual--either the first or second edition. These earlier books list all of our crazy symptoms and more. Devin relates her own experiences and those of some of her patients' in dealing with them. She does this with compassion and humor.
Yes, you have made a life full of love and fulfillment. But you have done this while dealing with a condition that is still so little understood. You have been in near-constant pain. You have known precious little restorative sleep. You have had multiple chemical sensitivities (also covered in Devin's books). And still you are not well.
Read these early books. Then, after you have digested all this information, Read her latest, Healling Through Trigger Point Therapy. It gives a lot of practical, hands on techniques that may help you. Many of us have benefited greatly from her advice.
Please understand that there are ways to make your life a little less painful. Many of them do not involve taking medications (which would only result in more allergies or sensitivities).
Go slowly, very slowly. Accept that any body work you do--from physical therapy, to accupuncture, to trigger point pressure or injections, to gentle exercise--will release the toxins that are presently trapped in your myofascial tissues. Remember to hydrate, and to be super gentle to your body.
We all have this disease. (I refuse to call it a syndrome.) It effects each of us a little differently. No one treatment helps all of us. But each and every day, more is learned about our condition. Each and every day, we can expect more options to be available to us. And each and every day we can have more hope.
Cory, you must be extremely proud of your son. If he continues to excel, you will be amazed at the options open to him in this life. Students who have the combination of raw ability and the willingness to work hard can accomplish anything. Really!
Those who continue on this path do not need to worry about where the college money is coming from, either. I'm sure that this will be a blessing for you and your wife.
Now, let me give you a little preparation for what MAY come at some time in your son's future. No one is perfect. We all have strengths and weaknesses. There may come a time when your son encounters a course that is far from easy for him. (Mine was freshman typing.) No matter how much time and effort a student may put into this endeavor, he may never do well. If this happens, please let your son know that this is something that happens in life. He should do the best he can with a reasonable amount of effort. Then he should accept that he will not be getting A's in that subject. Don't let him be discouraged. Do not let him feel as this is a failure. In reality, it is a valuable lesson. He now knows more about himself and his natural aptitudes. He will be more tolerant to those who do not do as well as he does in those areas where he excells. And, like me, he will be able to rule out certain career paths. (I knew for a fact that I would never become a secretary!)
Sometimes, those who breeze through life with no roadblocks have no idea how to manage them when the eventually appear. Be there for your son to help him manage his and to learn from them.
Teach him also that doing something that does not come naturally to him may pay off later in life in totally unexpected ways. (Boy, am I ever glad I took that typing class--even with it's C- that pulled down my GPA. Without it, coming here would be a chore instead of a joy. Mind you, it took 55 years for me to get to THIS point in life.)
Another wonderful Spring day in WNY. And, boy, did we ever make use of it. Morning saw DH having the stitches out from that lump that was removed from his left hand 2 weeks ago. Everything went like it should. We even made it for our eye appointments downstairs on time. The lump was basal cell, and it was removed completely. Neither of us have any changes in our eyes. At 70 and 71, this is a big deal; so many of our friends and relatives get glaucoma or macreal degeneration at this age.
After the doctors, we split up with hubby going to the lumberyard and me to the library, grocery, and pharmacy. Wednesday is the day I fill our pill reminders, so it was time to get those that would run out next week.
Home with the groceries. DH helped me get them all in the house, and I put them away. Time to get a fresh ham roast in the oven. A little rest time, then the truck came to bring some cows to market. (Anyone who has bought beef lately knows that the market is up. Hopefully, they will bring enough to cover DH's spring planting costs for corn, reseeding pastures, fertilizer and other chemicals.)
Just as the guys got back in the house from loading the cows, a neighbor stopped to tell us some of the "teenage" cows were out of the pasture and heading towards the road. This has gotten to be a daily event. They think they're deer and jump over the barbed wire. Most of the time, they manage to knock the top wire loose in the process, too. So dinner was another hour later. I was just clearing the table at 9 o'clock. I'm tired.
Mary, sorry about the IBS coming back. I know how awful that can be. Either you are constantly worried about making it to a bathroom, or you are so blocked up that anything that does come out clangs as it hits the toilet bowl. The May issue of Reader's Digest has a 2-page spread on using fiber to manage your bowels. Basicly: The fiber in whole wheat, corn, and leafy vegetables speeds digestion and eases constipation. The fiber in oatmeal, beans, apples, strawberries, and blueberries slows things down and eases diarrhea.
Cory, I cannot imagine being on all fours. The last time I did it--for a physical therapy eval--I was sore in arms and legs for 3 weeks. You do this to support your family. You are their hero. Here's hoping that tomorrow lets you stand--or better yet sit--in order to do your job.
Hope you all get a restful night's sleep and find tomorrow a wonderful spring day full of hope.
I can top you for unwanted phone calls. In the past few days, I've had ones from "sites" that say I've been shopping around for:
A college degree. (I've got my 3 and--at 70--probably don't need another.
A new car.
A "rent to own" new home. (We'll keep our farm, thank you.
Needless to say, I checked with annualcreditreport.com. So far, no one's been checking us out there. Now for the state attorney general. My SIL had her credit/identity stolen, and it took her forever to straighten that mess out. Hopefully, any potential thieves will stick to people with a little more to steal than we have!
My dear friend, good neighbor, and cosmetologist, Jessie went with me to the dermatologist last week. We make a day of it going into the big, bad city of Buffalo each year. When she climbed into the car and buckled her seat belt, she noticed a stone was missing in her heirloom ring. On the off chance that the stone is somewhere in the Caravan, she is busily vacuuming my car from front to back. She's got a new bag in the vac and a nylon knee hi over the vac's hose. Little does she know. It's a 2006, and it's NEVER been vacuumed! Here's hoping she finds the stone. Wouldn't it be nice if she found it AFTER my whole car was vaced? (I know, some friend I am. But, remember, I can't really vacuum anymore unless I want a major flare.) Jessie says she has so much fun as we cruise whichever mall we wish and stop in any little town that beckons, that she feels guilty not buying my gas. So, my clean car will be a good thing all around.
We've got a cool (almost 60) day with spring gusts, high clouds, and plenty of sun. I'm dying to take a walk, but that darn hip won't let me. Weird. When I needed the left one replaced, it didn't hurt anywhere near as much as the right one does now. But the X-rays say it's just moderate osteoarthritis. Hopefully, the cortisone-in-the socket-guided-by flouroscope Monday does the trick.
Here I am with my spine at the waistline not hurting--at all--for the first time in 42 years, and I can't go for a walk because of my hip. What a crazy world. And I thought I would be so much better off after the radiofrequency ablation.
Hope the rest of you are experiencing a beautiful Spring day, and are feeling well enough to enjoy it. Each day is a gift. Treasure it.