Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi All,
As I continue to understand this diagnosis, I know how important sleep and rest are... but sleep is one of my biggest problems. In addition to the regular everyday of never feeling like my sleep was restorative... (to the point where I can literally remember the one time I woke up feeling rested because I was so shocked and babbled on and on to my husband - "THIS is what you get to feel every morning?? This is why you're so awake and want to immediately start talking about budgeting or random things at 6am? Other people get to feel this??) ANYWAY, in addition to that, I always used to have trouble going to sleep... much of it was psychological (just not wanting to go to sleep because of anticipated nightmares or just controlling my body, etc.) - but now that I actively try to go to sleep - I can't stay asleep for more that 1 or 2 hours at a time. I'm able to fall back asleep usually - provided my pain isn't TOO bad and doesn't keep me up (which it does sometimes) or my dreams weren't too vivid and disturbing... but still - I'm feeling worse and worse every day and can't seem to get a handle on my pain but don't know how to improve things if I can't get a handle on my sleep.
I'm on a wait list for a sleep study... and I'm going to see my neurologist again tomorrow and then my rheumatologist next Tuesday - but I'm reluctant to take more drugs bc I'm already taking so many things. I've been trying to ritualize things in an effort to soothe - so I'll drink calming decaf tea and light a candle and read a relaxing book before bed, etc. or try taking a warm shower or snuggle up with netflix... but nothing seems to be working :( On top of it all, one of my daughters is struggling with her own psychiatric issues and so gets me up a minimum of once a night to come up to her room and sit with her while she tries to sleep (her sleep is just as bad as mine). It feels so frustrating on top of it all to get woken up even when I do get a brief window of sleep - but - short of sleeping up in her room (which is definitely not on my to do list) I don't know what I'm going to do. And, again, even if I stayed up in her room - my own body won't let me sleep more than an hour or two at a time - tops.
:( :( Is this part of a "flare" and it will get better? or am I stuck in a flare and not able to get out because of this?
My pain keeps getting worse and it changes every day... today I have that intense discomfort from when you hit your funny bone? but it's permanent in my right arm from my elbow to my wrist and then it's like shooting electrical zaps of the same feeling shooting out to fingers on that hand. Nothing is helping it, heat, ice, pressure... I got on the computer to at least see if I could distract myself but it seems worse :( :( :(
As I continue to understand this diagnosis, I know how important sleep and rest are... but sleep is one of my biggest problems. In addition to the regular everyday of never feeling like my sleep was restorative... (to the point where I can literally remember the one time I woke up feeling rested because I was so shocked and babbled on and on to my husband - "THIS is what you get to feel every morning?? This is why you're so awake and want to immediately start talking about budgeting or random things at 6am? Other people get to feel this??) ANYWAY, in addition to that, I always used to have trouble going to sleep... much of it was psychological (just not wanting to go to sleep because of anticipated nightmares or just controlling my body, etc.) - but now that I actively try to go to sleep - I can't stay asleep for more that 1 or 2 hours at a time. I'm able to fall back asleep usually - provided my pain isn't TOO bad and doesn't keep me up (which it does sometimes) or my dreams weren't too vivid and disturbing... but still - I'm feeling worse and worse every day and can't seem to get a handle on my pain but don't know how to improve things if I can't get a handle on my sleep.
I'm on a wait list for a sleep study... and I'm going to see my neurologist again tomorrow and then my rheumatologist next Tuesday - but I'm reluctant to take more drugs bc I'm already taking so many things. I've been trying to ritualize things in an effort to soothe - so I'll drink calming decaf tea and light a candle and read a relaxing book before bed, etc. or try taking a warm shower or snuggle up with netflix... but nothing seems to be working :( On top of it all, one of my daughters is struggling with her own psychiatric issues and so gets me up a minimum of once a night to come up to her room and sit with her while she tries to sleep (her sleep is just as bad as mine). It feels so frustrating on top of it all to get woken up even when I do get a brief window of sleep - but - short of sleeping up in her room (which is definitely not on my to do list) I don't know what I'm going to do. And, again, even if I stayed up in her room - my own body won't let me sleep more than an hour or two at a time - tops.
:( :( Is this part of a "flare" and it will get better? or am I stuck in a flare and not able to get out because of this?
My pain keeps getting worse and it changes every day... today I have that intense discomfort from when you hit your funny bone? but it's permanent in my right arm from my elbow to my wrist and then it's like shooting electrical zaps of the same feeling shooting out to fingers on that hand. Nothing is helping it, heat, ice, pressure... I got on the computer to at least see if I could distract myself but it seems worse :( :( :(
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
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Well..my thyroid might be a problem. I have a high TSH but normal T4. TSH increases when your thyroid isn't producing enough thyroid hormones...if only the TSH is high, it could be early or subclinical. Will wait and see if they want to do anything about that or just recheck it at some point. Either it'll even out or my T4 will drop. Meanwhile it's hot and I'm working with Karen, and I have no...
it sounds like your are already doing a bunch of things right, in regardsto your bedtime routine ( doctors call this sleep hygiene, lol).
I am not surprised that you still can't sleep through the night, as this is a main feature of Fibromyalgia/Chronic Fatigue. You need a doctor who understands this, and who is knowledgeable in the field of sleep medicine. What it comes down to, is finding a sleep aid combination that is right for you ! I am very confident that a good night's sleep is achievable for you with the right medication.
Nobody likes to take more medication, but it is possible that you will need this only for a few months. I used a sleeping pill along with a mild anti-anxiety medication for three years before switching to a lower dose. Another great help is a high quality memory foam mattress pad as it prevents me from waking up with pain!
I hope your upcoming appointments are fruitful, and that you will get relief soon!
Those are just a few things I do. I hope they help.
I was previously taking clonazapem at night to help w sleep - but my PCP suggested I stop it when I started on gabapentin (that was before the Lyrica) and I never went back. I will ask the doctor if I should go back on that as a sleep support?
I'm glad that prednisone helped you - it's a NIGHTMARE drug for me. Maybe because of underlying psychiatric issues I have - but I developed horrible "chronic hives" this summer (I literally think the crazy hives were the final straw with throwing me into full blown fibro) but the only thing that eased them was prednisone (I had them covering nearly 100% of my body) for weeks. While I was on the prednisone the joint pain started up (and has never left). I briefly did another stint on prednisone in the fall for about 6 weeks on a much lower dosage bc my old rheumatologist thought it was RA originally - but the prednisone destroyed any quality of life or mental health I had so I currently beg not to be on steroids unless a doctor really thinks it's the only thing :( :(
My physical therapist still doesn't think it's fibro bc of the migratory joint pain and is convinced it's something else - but steroids and NSAIDs never help it so it can't just be inflammation... I think it's the nerves bc a lot of the time the pain is electrical or like a funny bone pain.
Anyway, thanks again - I'll talk to my dr and I'll look up the probiotics and ask about that too.
You should practice good sleep hygiene which would include shutting off the TV, computer and tablet at least an hour before trying to sleep. These devices emit a form of light that agitates the brain. So, no more Netflix at bedtime.
Try soaking in the tub with Epsom Salts to reduce your pain levels. You can also buy Epsom Salt lotion (Amazon). If you drink diet soda or use artificial sweeteners - stop. Use Stevia instead. Avoid deep fried food, lunchmeat, red wine or anything else contains nitrates. All of these items may increase your pain levels.
There are OTC things you could try for sleep. The supplement Melatonin works well for some people. I like Calms Forte which is made by Hylands. If I do wake up, I use another OTC called Mid Nite. There is no hangover effect from Calms Forte or Mid Nite. You can find them at CVS. Melatonin requires some experimentation to see what dose works best for you. Make sure that you read and understand any side effects that may be associated with these items.
You might want to have your arm/hand looked at by an orthopedist. Carpal tunnel is one of the many perks that can be associated with this complex illness.
A flare is a sudden uptick in pain. It can last a day, days, week/s and or month/s. There is really nothing that you can do for a flare except ride it out. It will come and then go when it is good and ready.
I hope that my comments are helpful to you. Take care.
I also have sleep apnea but can't find my machine as I just moved. The sleep study should be really helpful if Neuro doc is administering. They'll tell you what's going on. I would ask about your Alpha and especially Delta sleep. I have no Delta sleep until 7th hour!! And that is WITH the cpap on. SO, if I don't sleep 9 hours at least, I do not get deep sleep. It sucks for sure. Sometimes I get delta sleep in the afternoon with a cat nap and I piece night and day together if I don't get enough sleep at night but then it screws up my schedule which is real important for sleep hygiene.
There's some great info on www.sleepfoundation.org I found it interesting and helpful. I've been through all kinds of struggles mainly falling asleep with terrible insomnia. Lately, Belsomra has helped me best because my brain "wakes up" at night. I tried every single sleep med on the market and NONE of them worked. Rozerem a little, but Belsomra best. Or if anxiety is keeping me up, then I take Ativan or Tizanidine to relax my muscles and get rid of the muscle tightness. Make sure you take care of your pain management, because that will definitely keep you awake.
I find that a cold/slightly cold ice pack on my neck really helps calm and soothe me at bedtime. I also have a heated neck roll and get all my stuff on to feel better, then knock myself out !
Good luck to you!!!
Accupunture, melatonin, 5-HTTP, anti-depressants etc. Now I take Trazodone 150 mg and Zopiclone 3.75 mg and sleep well most nights. I recently added the Zopiclone again as I found that it STOPS hot sweats( from Menopause) at night! But I am not planning to stay on it in the llong term, as it gives you dry mouth.
jptexas - I had been taking gabapentin for about 3 months or so and then was switched to Lyrica.
I'm going to look up the information you all shared and talk to my rheumatologist about it on Tuesday - and if that isn't helpful, talk to my psychiatrist.
The other thing is just dealing with the life interruptions on top of it. My husband has problems with his thyroid - so when it's hyper - he is restless in bed. Additionally, my older daughter suffers with a lot of psychiatric/sleep issues of her own and wakes me up multiple times during the night. I had tried giving her calmforte and zquill at night but nothing helped her. Finally she's started some psych meds and literally the last two nights she hasn't woken me up (hallelujah). But I have to get up at 5:30 in the morning every day to make sure everyone gets up, gets fed and gets out (even if I'm not going to work)... and so just the whole thing is a problem.
... I guess in 10 years when my kids are out of the house I'll have a better chance! Ack