After filling out 2 weeks of a sleep diary, this sleep specialist wants me to go to bed at midnight and get up at 8:00am for the next week. He wanted me to do it for 2 weeks but could tell by the look on my face that it wasn't happening. When i asked him how many fibro patients he has had it said "They all have some form of insomnia and getting your body on a regular sleep cycle takes care of the sleep probkem." My answer to him was that most of us would love to sleep from 10 to 6, but our bodies tell us differently. I told him that I was willing to try, but I had already tried this the summer of 2010 and ended up with a severe migraine everyday from lack of sleep. Had to use vacation time because i couldnt function. When I asked him what I should do if it causes me to flare up and he said well, you tell me. Thats when the tears came and I said I'd probably lay in bed on my heating pad and take fioricet which wont do much for the pain and if it got so bad I'd have to go to the ER. That's when I got the cheerleader part " I know you can do it. You're strong and it will be easier than you think." Am I stupid and naive thinking this is going to work? I would be beyond happy if it worked, but I' ll be taking the same meds I take now at night, ambien extended release, clonazapam, and cyclobenzaprine. My thoughts are this: our sleep problems are a symptom of fibro and without good sleep, the pain increases, we get cranky and depressed because we are in pain and need sleep! I know that many of you say you can sleep for hours, but is that because you havent slept for days prior? Or does chronic fatigue syndrome also play a part and is also your diagnosis? I can see how people just give up trying to find help.
I was told as I left that he is confident that I will be off all nightime meds when we are done. I think I'm being duped! Quack, quack, quack. I'll keep you updated if I make it through.
So, why from 12-8? Have you stopped working completely? (If you posted this already, sorry, the fog is hitting!) there are a lot of theories out there that say that fibromyalgia and sleep problems are linked, but which comes first? Who knows? I you think about the last time you were forced to go with no sleep for whatever reason (before fibro started), then you know how you felt until you were able to get some sleep. Like you had a horrible case of the flu- body aches, the whole works. For me, it was about 8 years ago when I was up all night running around the city of Houston trying to find a child killer and his other kids. I thought I might just lay down and die if I didn’t get to sleep and I still had to get through court before going home. So, sleep problems can cause serious detriments to our health. But, being in pain can cause serious problems with sleep. Maybe it doesn’t matter which came first. I don’t know. I am just an humble, non medical type of person.
I can tell you this. I have read a lot of research about proper sleep “hygiene” and how important it is to have a routine, such as consistent bed and wake up times, not using your bed for anything but sleep and sex, etc. Seriously? says the girl who has come to hate her bed cuz she spends so much time in it. I guess anything is worth a try and if his idea works, then please let the rest of us know. But, yeah, I will probably be dreaming of ducks tonight; that is, if I sleep.
Ohhhhhhhhh, Sandy, I'm so sorry that you got this QUACKery advice from your sleep doctor! Please please think long and hard before doing something that will end up in a major flare!
I am one of the lucky few who CAN sleep from 10 pm - 6 am if I want to BUT my body tries to put me right back to 1 AM to 8 AM. Or even 2 AM to 8 AM. That's where my natural sleep cycle occurs now, due to fibro, and it's not even the chronic pain doing it, I don't think. I'm not sure. All I can say is that MOST fibro people can't get to sleep to save their lives and to tell them to "reset their sleep cycles" is ignorant, at best. From his words, it truly sounded like he hasn't a clue about fibro and won't listen to patients to find out. If it were me, I wouldn't do what he suggested; I'd find another sleep doctor. Just please, whatever you do, be careful and take care of yourself. If his suggestion puts you into pain territory with no gain, then please consider not finishing it.
Smiling as I write this - that helps! I am still working, but I am using 3 hours of sick time each day so I can come in at 10. When I had to get up at 5:30 am to be to work at 7, I would go to bed around 9:30, read till 10:00 and shut my light off. If I were to sleep the whole night, I should have gotten 7 1/2 hours. I need to read before I sleep to turn my brain off. Otherwise I'd be thinking of stuff all night long. He said I'm spending too much time in bed because I go to bed and read, fall asleep around 10 but keep waking up all night. I can sleep and dream good sleep from around 4 am -8 am maybe 3 out of the 7 days a week. Not enough sleep to have a clear head and less pain and try to work!
I agree Sandi, Quack, quack How many are out there? A nurse from my Psychologist called today and said Robin , Dr. Theiss needs you to come in to fill out your SSi forms but since you see Gail she needs to see you. I said excuse me maybe you called the wrong person because I have only seen the Dr. Shoot I have seen her at least 20 times does she not take notes. I can't wait to see her on Monday and I will probably look for a new Dr. I am still laughing at this.
No, not personal, well, maybe a little, but it was actually my job to investigate child deaths. And to take care of the other kids in the home if they were at risk for abuse or neglect. And yes, it was awful. That was like the straw that broke the camel’s back and led me to resign from a job I had mostly loved for 13 years, go back to school and become a paralegal.
Oh man. I'm sorry. What a horrible assignment. Freaks me out to even think about it. Or checking in on the ones who are at risk. You have to have a strong, strong exterior built up to handle this. I give you tons of credit for seeing it through and then getting the heck outta Dodge. Being a paralegal sounds much better for your mental health.
MP, question: Do you think that any of the stress you underwent in that job could have lead to your fibro? I mean, I know you had other stressors as well, but could this also have been a part of the reason?
No wonder our medical system costs are so high. Even the office people running their offices can’t get it straight.
When I told my husband that I had to stay up till midnight, he said no way are you gonna make it. You’ll be a mess! And I’m taking my granddaughter to have breakfast with Mrs. Claus at 8:30 and I’m not going to be a basket case.
No, definitely not enough time to refresh and recharge.
The more I think about your sleep "specialist's" advice, the stupider I think it is and the madder I get! I mean, how stupid is it to tell someone who can't sleep due to pain to just go to bed at a certain time and wake up at a certain time? Is that the best he can come up with? And what really got me angry, Sandi, was when you asked him how to handle the pain and he said, "well, you tell me." Hunh? You ask a very legitimate question for a fibro sufferer and he expects you to figure it out? I'm sorry, but to me his conversation sounds like it's directed to a naughty child, not an adult with a legit chronic pain syndrome.
Petunia, the jury is still out on the cause of fibro, but, I truly believe that working under that kind of stress, mental/ emotional and physical, took a huge toll on my body and mind. I think I slept for two weeks straight are I quit. I had may years to catch up on. I believe, like SK does, that there is something else going on with me physically that has kicked the fibro off; now I just need to find it. So, to answer your question- yes, I think my job and all the other stressors I experienced were major contributing factors as to why I have fibro. But, ya know, I had many positive experiences and helped a lot of children and parents so I wouldn’t change it for the world.
Oh Sandi, what a waste of time that doctor visit was. He is talking from a textbook and that suggests that if you get into a routine everything will be fine. Hum, wouldn't that be wonderful?! BUT we fibro sufferes live in the real world of fibromyalgia where we live with chronic pain so what do we do then? I have tried getting on a schedule but it only worked for one night. The other nights I tried to make myself stay in bed no matter what. But the pain just will not allow us to stay in bed. We have to get up and do whatever we can to reduce the pain so that takes away from your sleep. According to most of us(not just me) pain escalates at night so we try the next day to work while being sleep deprived. It's awful.
Sandi, I really do hope that you are successful in your schedule. But you've already tried to do this. Now you are wondering where do I go next? Another doctor?
Robin, you may be laughing, but you know very well the frustration from seeing the doctor!! For heaven's sake, it seems like they don't really care because people with fibro need some individualised care, not what the textbook says. We need a doctor who listens to us and for him/her to really think about what we've just told them before they make suggestions that won't work. Sigh
Rachel, If I don't laugh I'll cry, I have seen this lady for some time now and she has no clue who I am. Now I really wonder if she has ever paid attention to what I said. We sure do need doctors that will listen to us and take us serious. Hugs
Yes Robin, it's so sad that after all the times you have seen her she still doesn't remember you.Does she help you at all? With meds?
Starting over the search for a new doctor when you have chronic illnesses is not that easy because you have to explain your situation all over again. You never know whether they have really registered anything you have said.
Maybe you should go in the next time with a list of questions for them to answer. But look what happened to Sandi when she asked point blank questions. Her doctor treated her in what I would call a condescending manner. Sigh How do we make them care?
I just read an article saying the incidence of Juvenile Fibromyalgia in scool aged children is 2% to 7%. Lots of stress in the schools so look how it is affecting our children. Bullying, shootings, fear of some teachers who pick on them or yell at kids. SIGH
OMG, Sandi, it is 3 am and I just woke myself up screaming from a nightmare where monster ducks on steroids were chasing you and I couldn’t save you! Horrible. LMAO
Another night of 3 hours sleep. Yuck!