Decades ago, I was told I absolutely did not have fibromyalgia. However, over the years, it has been suggested several times. I, also, have Sjogren's Syndrome and trigeminal neuralgia. It may be that I have developed fibromyalgia over the years, so I am not saying I do not have it. I am certainly stiff all over. However, the one thing I have never had are sleep difficulties. I am out like a light at night. Unless I am in a lot of pain, but even then, I can sleep through an amazing amount. Are sleep problems the gold standard for fibro, or is it, like everything else involving symptoms, just one of the "might haves"? Thank you.
Hi booklass, that is a great question. While many people with Fibro do have sleep issues (trouble going to sleep, waking frequently, sleeping too much) it is not one of the defining ways to diagnose Fibro. I invite you to check out the Fibro 101 category which has helpful information about Fibro. Also, Ben's Friends has support sites for Sjogren's Syndrome http://www.sjogrenssyndromesupport.org/ and also for Trigeminal Neuralgia http://www.livingwithtn.org/ if you are interested. Hugs.
Hi Booklass, what does your current GP think about you having fibromyalgia? I would get a referral to specialist rheumatologist or neurologist, have all the blood work done plus physical exam and history. That’s the only way to get a real diagnosis of fibromyalgia. Usually sleep disturbances are a hallmark of the illness along with widespread body pain, not just stiffness. But everyone is a bit different.
Good luck and let us know the outcome!
Starr
Most often I have read that insomnia and poor sleep quality are hallmarks of fibromyalgia. there are many other inflammatory conditions that can give you symptoms of fibro.
Welcome Booklass,
First there is no way to say it's a hallmark of Fibro, but it's a good guess. I've been diagnosed with Fibro for several years but tests and discussions with doctors say I've had it since early childhood. You don't have to have sleep problems to have fibro. Most people do because of their other symptoms. If you don't good for you that's wonderful. I would suggest as Starr did that you see a specialist. Your general Doctor is in too much of a hurry and not knowledgeable enough to deal with your issues. They are trained for assembly line medicine now. I know the process of finding answers is tedious and downright crazy making. We are here to talk until then. Answer questions and offer encouragement.
Good Evening,
I have had sleep issues since before I was diagnosed with FMS and have tried everything under the sun, but nothing works. I can say that it has been much worse because of constantly waking up with pain, spasms, having to have special pillows, etc. I am up usually every two hours and then back to sleep for a couple of hours. It has probably been 15 years since I have had solid nights sleep. I think along with the FMS, for me, especially not working, I lie in bed most of the day because of the pain, but don't nap. I don't know that sleep problems are one of the "golden standards" but it certainly is a huge problem for many of us. I am jealous that you sleep so well! My situation was so bad getting up and down, leg cramps, etc., my husband had to move to the guest room. I have also found having it really cold in the room (70 degrees or lower) is helpful to me.
When I first moved backed here, I had a horrible doctor who knew nothing about FMS except what he read on his PDA. I would definitely find a specialist. I see an orthopedist, but a brain/spinal type group my also be helpful. There are the trigger points, I want to say 21 of them, that they can do. Good luck and enjoy your sleep!
Deborah
Debra,
Sleep is such a touchy thing. I sympathize and empathize with you. I've had trouble sleeping all my life. My Mother tells me as young as two I sat up all night playing in my bed . I can't take sleep meds they give me violent nightmares. I've tried all the crazy tricks over the years. Teas, pills, yoga, in my teens I even had a drinking problem. Don't. Just saying. I still have trouble sleeping, but I've learned some coping skills. On top of that my Neurologist prescribed Valium 5 mg. a night. Most nights it helps me get a solid five hours of sleep. You and I know that five hours is pretty golden when you don't sleep. Other nights I do breathing and meditation. When I absolutely can't sleep I get out of bed. I know that sounds strange but it helps. I get up go to the other room and do something to relax. Read, crotchet, cuddle the dog. I avoid t.v. because it winds me up or depresses me. When I start to feel tired I go back to bed.
Also and this was so hard. I gave up caffeine, that's not just coffee, tea , foods containing it. When I have to have say ...chocolate. Because we all do on occasion , I eat it early in the day. It's difficult but caffeine not only affects our sleep but it can change the way our meds work. I hope I've helped. If not I hope I haven't offended. I know it's a touchy subject. It is for me anyway. Be blessed.
There are so many issues with fibro. If you don’t have sleep issues, that’s wonderful. Be thankful for what you don’t have. I would love to sleep without drugs and wake up pain free. I wish you all the best in your fight with this miserable disease.
When I was diagnosed with Fibro my doctor said my being up between 2 and 4 AM every morning was a classic Fibro symptom. That is besides waking every 2 to 3 hours the rest of the night. I was on Trazadone for sleep and even broke through that with pain. I have stopped the Trazadone now and they have recently put me on Amitryptaline which has helped some with the pain but I still am waking at night. I am so much more tired during the day though with it. We’ll have to see how things go from here.
I have dreadful nights where i have no sleep because of pain.not being able to get comfortable but can hardly move almost every joint hurts and stiff this disease is nasty. For sure
Hi booklass,
Maybe the question to ask you is even though you’re “out like a light”, how do you feel in the morning? Do you feel refreshed and alert? Often the problems people have relating to sleep are all those mentioned above; difficulty getting to sleep, staying asleep, months of insomnia etc but I can have night when I go out like a light but still feel completely un refreshed, mind numbingly tired and its an effort to do anything so its not so much the actual action of sleeping but if you feel refreshed afterwards as one of the symptoms of Fibro is un refreshing sleep.
I had sleep problems before fibro and they have mutated after having fibro. I sleep for 2 hours, awake for 1 to 2, then back to sleep. I am "in bed" or laying on a couch at least, all day and do not nap for more than 15 minutes. Before fibro, I slept all the time uninterrupted but was suffering depression. Actually I may have had fibro as young as 14. But EVERYONE is DIFFERENT. Not everyone will have sleep problems though most do due to dealing with nasty pain. It's not so much the sleep problems, it's the pain that causes them. If you sleep well with pain, thank god and good for you. I recommend seeing a specialist that can test your trigger points. That is usually what they go by. Don't see just anyone or you'll get misdiagnosed.
Thank you, Rollinglegs, I have tried Valium, Ativan, Xanax, Amitriptyline, you name it. I recently started trying plain old Benadryl, which has the same ingredients as your PM formula meds; it helps me get to sleep pretty quickly, but only for maybe 3 hours. I noticed I started having lots of weird dreams, not nightmares, just odd dreams. I had a horrible day yesterday and laid in bed most of the day, finally feel OK this morning as I did sleep a bit, but I NEVER feel refreshed, ever. I don't like chocolate and only have one cup of coffee in the morning and a couple of sodas throughout the day, but never after 6pm. I did try Valerian root, but it reacted horribly with my other meds - another giant problem I have.
One thing that has helped with comfort, and I have no investment or anything in these companies, is my pillow. I found the "My Pillow" (you may have seen the quirky infomercials) but it is a great pillow. I also went to diapers.com and found an awesome maternity pillow which is a GIANT upside down U shaped pillow that curves where you would normally have your pregnant belly. I have found that to be helpful, but still add another small back pillow; I can only sleep on my side. This pillow is huge as we have a king size bed and even with my husband not sleeping with me, it takes up half the bed. It is about $100 but I think worth it. Bottom line is, like everyone says, we are all different, but I am also glad to know that there are so many of us up all night sitting at our desks, reading, etc. I think exercise would help, but I just don't have the energy to do that :(
Deborah
I do not know. Fibro comes with so many problems. I was diagnosed with Fibro in 1992 after seeing a ton of doctors. I have always been a sleepy person even as a child. I have always been tired also as a child. I was known as the party pooper. Started having arthritic pain in my hands in my mid 30's. And it has been down hill since then. Aches and pains, stiffness etc. etc.
Later came the Fibro and then IBS. I was later diagnosed with severe Sleep Apnea and the brain fog. I am on a CPAP machine take two pills to stay awake. Even had my tonsils removed thinking that would help. It didn't. Then comes the insomnia . So now I am given a pill to help me sleep at night.
I am told the CPAP machine is working, however I still be sleepy during the day. So, much to the point. I was medically retired because I could not stay awake. Still dozy even with the meds. So, then I am diagnosed with Idiopathic Hypersomnia. Somewhere along the journey I was diagnosed with Chronic Fatigue. So I am not sure where my sleepiness is coming from. The CPAP is working so that is why the diagnosis of Idiopathic Hypersomnia comes in. I would give anything for a good nights sleep and waking up feeling refreshed and ready to take on the world. It just seems the older I get the worse it gets. I am praying the doctors won't come up with another diagnosis next year. I am now 62 yrs old and sleeping my life away. I try to do what I can when I am able, trying to get some joy out of life. It is good to know that there is one person with Fibro that does not have the sleep issue.
One thing I have learned about Fibro is that stress and over doing it will only make it worse. So, we must pace ourselves. I do have some good days. They maybe far and in between but, there are some. So, I am grateful for the good days.
Peg
I think it's one of the "might haves." I still can sleep through the night if I have my muscle relaxants to keep my body from becoming too stiff. I always did sleep relatively well. Howeve, I also have sleep apnea. And the one thing I noticed in retrospect, once the fibro got going is that I could no longer fall asleep until 10 AM. Usually I couldn't conk out until 2 or 3 AM. But I still slept well.
So no, I don't think that you must have sleep issues in order to have fibro.
If you really do suspect fibro, maybe it would be worth getting a new doctor, or even going to a rheumatologist. I would hate to think bbc of you suffering with it with no help at hand.
Hugs and sympathy because fibro SUKKS to have,
Petunia
Giving up chocolate must be murder. I feel for you!
Petunia
Rollinglegs said:
Debra,
Sleep is such a touchy thing. I sympathize and empathize with you. I've had trouble sleeping all my life. My Mother tells me as young as two I sat up all night playing in my bed . I can't take sleep meds they give me violent nightmares. I've tried all the crazy tricks over the years. Teas, pills, yoga, in my teens I even had a drinking problem. Don't. Just saying. I still have trouble sleeping, but I've learned some coping skills. On top of that my Neurologist prescribed Valium 5 mg. a night. Most nights it helps me get a solid five hours of sleep. You and I know that five hours is pretty golden when you don't sleep. Other nights I do breathing and meditation. When I absolutely can't sleep I get out of bed. I know that sounds strange but it helps. I get up go to the other room and do something to relax. Read, crotchet, cuddle the dog. I avoid t.v. because it winds me up or depresses me. When I start to feel tired I go back to bed.
Also and this was so hard. I gave up caffeine, that's not just coffee, tea , foods containing it. When I have to have say ...chocolate. Because we all do on occasion , I eat it early in the day. It's difficult but caffeine not only affects our sleep but it can change the way our meds work. I hope I've helped. If not I hope I haven't offended. I know it's a touchy subject. It is for me anyway. Be blessed.
Pookie is right, unresfreshing sleep is a definite sign of fibro, and I've had that symptom since I was a kid. I wake up and feel soooo tired in the morning. Persists for several hours. I have sleep apnea and use a CPAP machine, but still feel tired when I awaken.
Is it possible that you have a sleep disorder without realizing it? Restless leg syndrome is one, as is night terrors. Sleep walking is one as well. And, of course, sleep apnea.
If you do have fibro, just consider yourself lucky to not suffer from sleep issues.
Made a mistake, meant to say, before the fibro got going, I could fall asleep at 10 PM and sleep through the night, but once I got the fibro, suddenly I was up until 2 or 3 AM most nights.
HI it's SUZYQ,
No your not the only fibromyalgia without sleep problems.I like you are out like a light when I get in bed mist if the time.if I'm sick with bronchitis,flu,sinusitis it might take me longer or if I'm stiff or in pain which doesn't happen very often.there are nights I get in bed wakeup to use the bathroom and can't go back to sleep.I drink warm milk,watch tv,go online to the lubricant and I'm in bed asleep in less than an hour.
I don't generally have sleep problems--I sleep about 15 hours a day most days. I think it just varies from person to person. I must say, tho, that I had some sleep problems early on--back 25 years ago or so--but once I got on a low dosw of the right anti-depressant it evened out my sleep patterns.
It isn't refreshing sleep, I am still fatigued all the time, but at least I sleep.
Kimberly :)