General Chat

Didnt take you long at all Liz, very quick i have to say, very interesting to read...i will be on tomoz at some point, more so at night...night, hope you sleep well too..x

Night, Kaz, sorry it took me so long to get the whole article on the thread lol Hope you manage to get some sleep tonight, catch you tomorrow evening maybe. Liz xx

Im going to head to my bed now but will look back tomorrow and read some more of the threads you have put me onto, thank you so much for your time and your help with it all, i now know its not all in my head like some people think...a BIG thank you to you...hope to catch you again soon...nite x

PLMD can be quite annoying when you are already suffering from widespread pain and other fibromyalgia symptoms. Sometimes people with PLMD can become quite violent, kicking and flailing while they are in bed. People with PLMD often report bouts of insomnia or daytime sleepiness, which can exacerbate their symptoms. Bruxism Bruxism (teeth grinding), frequently affects people with fibromyalgia. Bruxism is thought to be a part of a disease that is closely related to fibromyalgia, called Temporomandibular Joint Disorder (TMJD). This disorder causes muscle pain in the face, neck, shoulders, and back, and often leads to grinding of the teeth. 75% of people with fibromyalgia also have TMJD. Nocturnal bruxism occurs when you are sleeping. For some reason, sufferers begin to clench the muscles in their face causing their teeth to grind together. Many are unaware of this as they are sleeping, but in the morning they can be left feeling achy and sore in the jaw area. Bruxism can lead to a variety of dental problems, including loosened and broken teeth. I do this tooth grinding stuff and I worry my teeth will be getting like the stars, coming out at night lol

Alot of this all makes sense to me now Liz, the more i read the more im beginning to think that this could be my problem, some days my joints,muscles are worse than other days, when it is really bad in my hips, ankles and feet i can barely walk it is so painful...RLS really gets me down too especially when it is really bad, if i have a bad night with that and also with joint/muscle pain i wake up feeling as if ive never been to my bed, it takes me ages to get my joints moving when i first get up in the morning, walking down stairs to make a coffee is torture cos my hips and ankles just dont seem to work properly cos they are that stiff, think i need to definately mention this condition to my GP when i go to see her...

Kaz, I just found this and it mentions rls as being part of fm. Fibromyalgia syndrome causes symptoms of extreme pain in the muscles throughout the body. Sometimes the pain associated with the illness can be so intense that sufferers cannot continue with their daily tasks. But fibromyalgia isn’t just associated with pain. Fibromyalgia and sleep disorders also go hand in hand. In fact, it is thought that up to 80% of people with fibromyalgia experience some type of disordered sleep. Often, these sleep disorders leave people feeling tired, drained, and physically incapable of dealing with the stresses associated with fibromyalgia. Alpha EEG Anomaly An alarming percentage of fibromyalgia sufferers have a sleep disorder called alpha EEG anomaly. This sleep disorder may actually be a cause of fibromyalgia because so many sufferers have it. Alpha EEG anomaly affects deep sleep, preventing sufferers from getting a good night’s rest. Alpha EEG anomaly occurs when sudden bursts of brain activity occur during a time when the brain should be in deep sleep. These periods of intense activity are measured as alpha waves on an EEG monitor. People with alpha EEG anomaly do not have difficulty falling asleep, but once they reach deep sleep, their brains begin to act like they are awake. This leaves sufferers feeling tired and drained. Sleep Apnea 80% of people with fibromyalgia suffer from sleep apnea, a disorder that causes momentary stoppages in breathing. Sleep apnea only occurs when a person is sleeping, but it can affect some people so badly that they actually cause themselves to wake up. Many people who suffer from sleep apnea don’t even know that they have it - usually it is a partner that notices the sufferer waking up. In apnea, there are gaps in breathing that can last for a few seconds or even as long as a minute. These gaps are often caused by a collapse in the airway due to snoring or being overweight. This is referred to as obstructive sleep apnea. However, there is also a much less common form of sleep apnea that appears to be caused by a defect in the central nervous system. Referred to as central sleep apnea, this type of apnea is caused by a miscommunication from the brain. For some reason, the brain 'forgets' to tell the lungs to breathe. People suffering from this type of apnea usually remember waking up. Sleep apnea symptoms can affect a person’s sleep patterns. Some people with severe sleep apnea actually wake themselves up hundreds of times a night, if only for a few seconds. This prevents the body from benefiting from any restorative sleep. Sleep apnea can leave fibromyalgia sufferers feeling increasingly fatigued and even more subject to pain. Restless Leg Syndrome (RLS) Many people with fibromyalgia suffer from restless leg syndrome symptoms. RLS causes unpleasant sensations in the lower limbs, so much so that the limbs have to be moved in order to reduce the pain. RLS occurs mostly at night, between the hours of 10:00 pm and 4:00 am, though it can also occur throughout the day in severe cases. It is thought that somewhere between 20% and 40% of fibromyalgia sufferers also have RLS. RLS is exacerbated by long periods of rest, particularly nighttime sleeping, long car rides, or airplane travel. People with RLS describe crawling, itching, burning, or aching sensations beneath the skin in their legs. These sensations are so uncomfortable that they must move their legs, either by getting out of bed, or by exercising or stretching. Many find that if they do not move around, their legs will twitch involuntarily. Typically, RLS affects the calves and lower legs, though it can also affect the thighs, feet, and arms. RLS causes major disturbances to sleep patterns. Because you are constantly being woken up or forced out of bed, many FM sufferers find that they just cannot get adequate rest. Many feel drained and sleepy during the day. Periodic Limb Movement Disorder (PLMD) Periodic limb movement disorder often occurs alongside RLS. In fact, 80% of those fibromyalgia sufferers who have RLS also have PLMD. PLMD is very similar to RLS, however it only occurs during nighttime sleep. It can also become quite exacerbated and even violent, unlike RLS. PLMD causes intermittent movement of a person’s limbs while they are in deep sleep. A person with PLMD may move their feet, knees, or thighs rhythmically without even realizing it. Most movements occur at intervals of between 5 and 60 seconds. For example, a person with PLMD might suddenly flex their knee, and then 60 seconds later, flex it again. These flexes tend to last for 10 seconds or more. The most common movements seen in this sleep disorder are flexes of the big toe, fanning of the toes, and flexion of the knees.

i was given amytrip for it to take at night but it didnt help me so i stopped it, sometimes when it is really bad i rub some cream into my legs and that can help me get off to sleep, it happens every night and i dread going to bed as you can tell...

Oh right, of course, a friend of mine has that. I read about something the other day that is supposed to help that syndrome, will try and remember what it was.

RLS= restless leg syndrome, its when your legs wont stop jerking and jumping about when you go to bed, it can happen during the day to but mostly at night...I quite agree GP's are useless and sometimes they make you feel that you are making things up and wastinmg their time...

What is RLS? I am fed up of trying to get my doctors to help, everything I mention now is put down to the fm, and recently when my shoulder was so painful I was in tears, my dr said well it might be arthritis, I will get you an xray, sent off a form which meant I would have to wait weeks for an appointment, so the next day I went to a & e, and they checked me over, said it was a pulled muscle just over my shoulder blade. If I had left it till the xray came through, I wouldn't have known the exercises the a & e doc told me to do, or to rest it, and it could have turned into a frozen shoulder, which I have had before on the other side, and it is agony, and often takes months to clear up, often needing a cortisone injection. Flipping GPs are useless.

Funny you should mention sleep!!! i havnt slept properly in years...i suffer from RLS and it takes me ages to get to sleep because of it and then when i am sleeping the pain in my joints wakes me when i am trying to turn/move. I will mention it to the doc when i see her. I find it hard saying things to the doc as feel they think im making things up, do you know what i mean? Kaz

Well you know, Kaz, I did wonder, a friend of mine in Germany has just been diagnosed and so many people have it, I have suffered for ages and it is horrible, the sleep problems are the worse part for me, I never wake feeling refreshed. There are two main fm threads so lots to read, but it is worth mentioning it to your doctor, there are simple tests to make sure. Sadly, there is not a lot that can be done to help except managing the pain and possibly taking amytriptyline at night to help you relax and sleep better, but it didn't work for me! Let us know how you get on, and meanwhile treat yourself kindly. Liz Have nudged the original fm thread, it is very long but lots of info there too.

hi Lz, i have read the thread about Fibromyalgia, what an interesting read...i had never heard of it before now...very interesting....sounds like a few people suffer from it...could this be my problem with my joints do you think? Kaz

Hi there Liz, thanks for that its most appreciated, i have suffered pain now for nearly 7 years due to my back, its like a way of life for me and i just try and get on with it, im hoping on the 23rd all will be told, i will have a look at the thread you mentioned, thanks..Kaz x

Hope the docs sort you out soon Kaz, constant pain is awful. Have you read the fibromyalgia thread, as stress, trauma, viruses, and shock can all contribute to this illness starting. Liz

Hi Glenys, yes it is the Kaz you know, not been on for months, back been giving me alot of pain and had surgery 10 weeks ago so its kept me away but now am back...getting back into researching again too, great to hear from you again, how you been? xx

Hi Kaz, you stranger, you! Is it really you, after all these months of not hearing from you? If I have got the right person - it's great to 'see' you again! Wish you better. Got to go in a min., won't be back on again till tomorrow probably, just in case you reply and I don't, lol. x *realises if this is a different Kaz, Glenys has just made a prat of herself*

only a doctor could tell you babes you may need a bone scan xxx

Hi Liz, i do have a stick but i try not to use it as dont want to depend on it when i am only 37, i have used it in the past when i am really bad but since the op i havnt, try to manage without it. Im hoping all will be revealed when i go to see my doc on the 23rd,also going to see her about the HRT as she wanted to see me after been on it for a month! Thanks for replying, kind regards Kaz

Kaz, oh now I understand the reason for HRT. Was a bit concerned as I was put on it too soon because my doctor didn't do any blood tests to be sure I was menopausal, just linked into one sympton and thought it was the answer. If you had problems before with your hips etc then it is possible it is arthritis but as I said it could be the strain of moving differently, cos of the op, also are you using a stick or crutches as they could be causing the wrist pain. Good luck, hope you get sorted out. I have osteoarthritis in both knees and the big toe on my right foot!!!!! Liz