OK. Here I go again. This night time thing is really becoming a drag. I use to look forward to sleeping. Now I dread the nights because they are very long and painful. I fell asleep for about an hour only to be awakened to this painful stinging in my toe to be followed by a throbbing knuckle then a shooting pain up my forearm. To top it off I feel a respitory virus coming on. The pain is so bad in my arm right now it is hard to type. But it keeps me from bursting out in tears. I started all this mess about two years ago. This is by far the worst pain... Meaning it seems to be progressive. Is this anyone elses experience?
My pain started in 2005 and I was just diagnosed. I sleep 1 to 3 hours a night and the pain has been very uphill. At the worse a few months ago I would be in extreme crying pain and I guess I was doing something weird as my husband thought I was having seizures. A few months into meds and just started therapy. I want to say it is getting better but sometimes I do wonder if I am just getting use to the pain. I play games on my phone during the night until I zonk out sometimes with my phone in my hand but keeping my mind on something other than the pain seems to help. I have learned to focus on anything but the pain or it seems worse. Sometimes if my husband is awake we talk about vacations or camping trips we did in the past. I tell him we have to talk my pain away. These are my ways of coping I hope you find something that helps.
Sounds like you have a very understanding husband. That certainly is something to be thankful for. I will be praying for you shammagren. We can all help each other. And you helped just by responding. Thank you.
I just woke up to a painfully cramping arm, half-numb face and ringing in right ear. The pain definitely travels from one spot to another. Trying to stay calm and relax so I can get another hour of sleep. Sleep deprivation has definitely taken a toll on me. Pain seems worse and my energy levels are about 50% of normal (if that). Praying for everyone to get some sleep!!!
I have not slept well all week! And off to work I go! I like my job (mental health counselor) but the emotional toll and being "on" for so long is not always helpful for my fibro. I hope everyone rests well and sleeps tonight!
Will it get better? As a 30 year chronic pain person. Yes it changes can't say better. I have always looked as each session as winning a battle. Here are some helpful hints no guarantee s because I still have nights with zero sleep. Time your night time meds. If you take them when you are in the bed you have to wait. Warm bath, shows that will keep you intrigued soft sheets get the best ones you can, pillows and more pillows. How old is your mattress? My dh tells stories to me, warm lotions.these are just to name a few. Be mindful of your pain when it hurts stop. In the beginning I wrote it down now you have this. It helps to see triggers. Hope this helps.
Thanks everyone for your stories and suggestions. My pain just recently got really bad so I am having a hard time adjusting. Spending a lot of time crying to myself. So all your suggestions are really appreciated because I know what I am going through.
I'm exhausted from not sleeping most of this week and worked the last 3 days in a very stressful job. My body feels like lead because of the fatigue I have anyways. When I do fall asleep, I've been having terrible muscle cramps and spasms that wake me up, then I'm done. I just got ambien from my mother. I took 3. I'll sleep tonight but feel worse in the morning. I actually yelled at my husband tonight. I never yell. We never fight. I'm tearing my own damn life apart while my body falls apart on its own. It's a constant struggle. But just know we do understand, I can't tell u it gets better. It's been 10 years for me and there's no end in sight. Hope you have a better night. Hang in there .
My alarm wasn't supposed to go off until 6:30. I've been up since 5 a.m. I don't go to work until 9. I feel tired, I tried to fall back asleep. Decided to just get up. It can drive you mad.......I'm sorry.
yes! it will get better! your pain may not change, but your psyche will become stronger than you could imagine. you will fear nothing. there is freedom in that, and happiness. take your drugs(don't be a hero, no one cares really and those who are judgmental don't understand) and use your aids. ask for help. one day everything just snapped for me, and I accepted it. don't force it, just take your time. ps: I totally agree with you on sleeping! I use a long term pain reliever to avoid torture dreams (vivid imagination plus pain = horrific dreams)
I am having a real bad time with fibro. Every cell, tendon, muscle and joint and skin all hurt and then the pains that go from place to place. I have SLE, OA, Sjoghren's, thyroid issues and fibro.. Sometimes I wonder if I will ever be me again. I used to laugh all the time. Now it's only sometimes. I'm so depressed at the thought of always being in pain and dragging myself around to do things.. My Mom passed away some months ago and I think the overall stress in my life is causing flares. Does yoga or tai chi help? Does anyone else get the fibro fog? And I snap at my husband who is usually supportive. I feel like I am only making it day by day. I am just a mess and can't seem to get myself together enough to manage this the way I should. I always wondered why I always feel so tired when I wake up in the morning. Restless sleeping I guess. Just nice to know there are others who understand. How do you deal with it when your best friend of 25 years really doesn't believe that this is all real. She says... Oh I forget things too.. My hip hurts too. I am so frustrated. I feel so alone sometimes.
I can so relate! From foggy head to people not understanding! If I mention my back hurting my hubby unfailingly says "well you didn't fall five stories". I understand his back hurts too but this is not a contest on who hirts more. Besides that, neither one of us can judge someone else's pain. This is the best place to vent because we're all in the same boat!
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I truly understand sleep deprivation. No one has said this but prayer works for me. It keeps me calm. Notice I did not say it puts me to sleep, no, it does not do that. It could be because I have not asked for that "miracle". At this point I truly believe it would be a miracle. I have a spinal cord injury but am not paralyzed, chronic pain, a very badly damaged spine that is basically covered with OA, plus fibro, bone spurs and several other bone, spine and degenerative issues. I have a supportive hubby that helps. But what helps when you cannot sit or lay down without the sitting burning with pain, without the laying down without pain and extreme discomfort. My RT leg & arm cannot take the pressure of me laying on that side and my left leg has developed intense pain so as I cannot lay on that side without shooting/stabbing pain. Back is too bad to lay on, cannot sleep on stomach due to 2 metal plates in neck. So I pray, sleep off and on and pray some more. I take Avinza (morphine) daily. Muscle relaxers, and percocets. But God is still good! I try to stay to myself when I am overwhelmed so as not to inflict my intolerance on others.
Wow, PRG, I admire you for how you're handling the situation. Especially that you don't want to inflict intolerance on others. I see that so often that people who are in pain take out their suffering on others. More power to you!!!
I can't sleep through the night as if I do the pain in my right hip is crippling when I wake up. I usually get up for three or four hrs during the night. I'm usually woken by pain, hip/ back/joint neck pain anyway. I was diagnosed with ME in 2009, though probably had it a lot longer as the medication I take for epilepsy causes many side effects which could be associated with ME. A a year later they determined I had no cartlidge in my hip joint, normally treated with a hip replacement but at 40 I was considered to young despite the excruciating pain. I'm on Bu Trans patches, 900mg of Gabapentin three times a day, and 20 mg of Citalapram for pain as well as paracetamol four times a day, and I'm still in pain. Prayer, relaxation, distractions and very supportive husband and friends are my coping strategies. My prayers go out to you all 😐 xxx
Cartercats, your post sounds almost identical to the symptoms I deal with, except I have a lot of spinal issues too. But many of the pains you suffer with and the medications are very similar to mine. I too have an issue with, if I sleep then I awaken with awful and cruel hip pain.
However, I have not received a prognosis of ME, because they performed surgery on my back several years back, they just automatically say its your back that is the problem. Well if you look at my pain diagram, there is a lot of pain in the back and legs but there is pain in a lot of other locations. What were the tests you received for that and how did they conclude you are suffering with that awful syndrome?