Apparently I needed sleep, & my family thought so as well.... Unfortunately my body pain continues on like the neverending story! So on one hand- Yay I slept! 🤗 then I awake back into reality. My body feels like I slept in a ROARING clothes dryer. Semi awake, I try to go back to sleep, to forget about the pain alittle longer- I begin to remember that I have painful "partially treated" autoimmune diseases. Now my reality sets in & I have to get out of bed. I have missed only 2 doses! All day now, I get to chase relief, that won't show its face until close to midnight. Do any of my friends in here, understand me? This just isn't good! Ouch! On a heating pad for my hips- since they hurt the most. Stretched out, so my knees don't yell at me. Need to move around so the rest of my body will stop screaming. Unbelievable. 🙄😥😩
I totally understand. When I do sleep I wake up in so much pain I wonder if its worth it. I don't sleep much. After a week of getting a few hours a night I have to take pain meds and sleeping pills to actually get sleep. Mornings are hell and so are nights. It can be so depressing. Some days I wonder what the heck am I fighting for just to feel like this. You know?
Sunshineplease- I completely understand. It's a continuous cycle of less pain, more pain, less sleep, no sleep, too much sleep! I wonder daily, is this vicious cycle worth it? At the mercy, of my doctors, to medicate the disease properly. There is no formula for CREST syndrome disease. What do you suffer from? There is so much we need to do, be aware of, plan for, talk about, etc. (how much walking will there be, is it gonna rain or be cold, telling my husband how I am feeling- when he doesn't get it & doesn't understand, where did I put my pills- since my short term memory has become non-existent, did I enter my pain for today- so there's a record when I go to the docs) I wouldn't wish this upon my worst enemy. Not ever! I totally get you, when you mentioned the way you feel in the morning & at night. Those are my worst times too. ((( gentle hugs )))
Are you on any medications to regulate your pain? My rheumatologist put me on Gralise, 600 mg in the morning and 1200mg at night, and also tramadol when needed. Gralise is a miracle for me. I used to feel like you do, and now it's manageable. Gralise also helps with restless legs, so let me tell ya, I pass out every night for al night. Which before was so uncommon. I used to wake up at least 5 times to go to the bathroom. It never felt like I actually slept!! I would recommend talking to your doctor about Gralise. I seriously couldn't have coped without it. I wish you luck. I'm so sorry you're going through what you are right now. Hang in there, it HAS to get better! :)
BaileyB- thank you for your response. I am on so many different meds for pain, it's insane! Pain in my "new normal" runs at about a 5. My pain management doctor said that if I am at an 8, 9, or 10 - it was because I was hit by a bus! Without that thinking, I always had measured my pain 1-10 with 10 being the worst. And I was mostly at an 8-9. So if you aren't confused - the docs "5" is my "8-9". I have been able to hover at about an "8". When the pain is more intense, it's only for 1 of 2 reasons. 1) it's gonna rain- it's raining - it just finished raining 2) I overslept & missed doses of my medications.
Oh no, I'm so sorry!! I'm glad to hear you're on something to help the pain, sorry to hear that you're still in so much pain. I hate for you that your doctor downs your pain! I really wish you luck and also the best.
Literally just installed this app & I can't thank you enough for posting what you're going through. I am truly sorry you are all in severe pain, I really wouldn't wish this mental torture on anyone. However, I can't explain the relief I felt reading & knowing I'm not going crazy and others understand it!!
Typical night, pain is too intense and I'm exhausted but can't sleep. You fool yourself to think if you can find a better position the pain will lessen but that's not the case, no matter how hard I try to re-adjust, med's aren't helping, heating blanket on high, etc. All the little tricks you wish would work but they don't & you feel helpless and relebtless So I just installed this app, I can't sleep as the pain is just so intense. I went on the search for some kind of medical diary for all my wonderful dr 'fo
Oops! hit send in error and you can't edit it seems. Long story short...wish I knew this app existed when I got ill. It's so difficult to explain chronic pain to healthy dr's or remember each symptom when everything seems to blend & your brain is a marshmallow.
Fieldy, welcome to the family! Thank you for your kind words. I fell into this app for the same reason as you. This is a great place to come and share what all the "normies" don't understand. We give "gentle cyber hugs" here that don't hurt. LOL! It's true, there aren't any edit functions here, once it's sent- that's it. Kinda reminds me of the way "it used to be" in tech land. 😉🤗
JoF2403- I completely understand what you mean! I am up - it's almost 2:00am here, & I can't sleep due to this migraine & pain. It's so nice to jump on here & distract myself from ... Well ... Myself! 🤗😊🙄
Aww...you guys and this app may just save me from losing my grip on reality or my will to keeping "fighting the good fight" haha I searched for this exact app to track/organize & remember all my ever so changing symptoms that are blending all together, every dr followup feels like the previous week's appointment. As each week answering the same questions with the same answers, maybe a tweek here or there.
It's so odd to relate more to complete strangers that really get "IT" oppose to family that know you your whole life, telling you it'll get better or tomorrow will be a brighten day cause you lived through today or something "those" healthy people say lol
Don't get me wrong...I love my family & friends. We're small in numbers but they are concerned & trying to understand and help. You get almost jealous they are "normal" as it's been so long you forget what healthy was like. Tasks that are a real challenge for you and they do flawless & no effort. It's such a simple task, it's natural to take for granted you are healthy. I'll admit it I did. I always was for the most part aside for simple, fixable stuff (colds/flu/broken bones).
Now My family looks at me with those worried eyes primarily. They love me dearly but the worry makes me feeling responsible cause MY hurt is now hurting them. It's hard to describe but you feel like nothing is in your control, I guess is my main issue.
Plus, I REALLY miss sleep!! What I'd give to be a teenager again and skipping class and actually just sleeping literally ALL day cause I CHOSE to pull an all nighter!! Haha Instead here I am, at 3:33am (make a wish Y'all!!) and I'm trying to calculate this week's HR's of sleep so I can plan when my body will finally be so completely exhausted it has no option but to sleep 6 or so HR's maybe solid. Your awake for so long but can't be productive or have fun like you did staying up as a kid.
I find the HR's from 3-6pm the longest & hardest for whatever reason but then sunrise starts...my coffee maker is setup to auto brew a 12cup pot everyday at 6:45am. Trying to stick to one aspect of a routine I use to have. Plus...no sleep+ coffee=friends (or the emoji translation of needed 😲+☕️=👫 haha.
Well hope everyone is enjoying their evening or I guess morning as its now closer to 4am
Wow, sleep deprivation makes me chatting. Honestly tho it's comforting knowing other people out there in the world of the inter-webs are not only awake but also in a similar boat as me. Deepest thanks ;) Ok, going to TRY to sleep again. May we all find a moment of peaceful sleep this morning (as saying 'good night' seems like cyber-bullying almost)
I didn't get to sleep until 1;00 am despite taking an oxazapam for sleep, now I'M up at 5:00 am to go to the Integrated Chronic Care Service here in Nova Scotia. There's a fybromyalgia /CFS specialist there I see sometimes. I also have environmental illness, they discuss that there too, no treatment for that, you just basically have to use non scented things & stay away from smoke, perfume and certain fumes. I'M tired as hell, those oxazapam make you feel drunk the next day, I want to get off those and use Zoplicone instead, I read Zoplicone helps with GABA production in our bodies. Have a great day everyone!
Fieldy- I felt like I was reading my own post while reading yours! Flappyslady81 gave me the impression that you were new? If so, welcome! Your post was spot on! My family tries their best to be understanding, they really do. So if I have a good day- pretty productive etc. they expect that I am all better & it will be the same tomorrow. Unfortunately it is usually worse cause now all of my body is fighting all the movements it incurred the day before. It's mind boggling for us all! I have just come to accept that each day/night is its own entity & I won't know until that moment how I am going to feel. It can be extremely frustrating for my husband. 😢😥 and my kid for that matter. She is much easier at going with the flow than he is. I don't know how else to comfort him, when I don't have a consistent comfort coming from him. Any ideas? I have already given him the oh so fabulous letter to my loved one. That worked for about a week.
I often don't get more than a half hour or so of sleep, sometimes more depending on how bad the pain is. It's been 4 years since I got a good night of sleep. I avoid coffee and anything with caffeine in it and I still get heart palpitations, Flappys. I think that's from not sleeping.
I'm glad I noticed this post! And gentle hugs to everyone!
Arvid- I thought I didn't sleep! How do you function day to day? What are your medical issues? I am super curious. I get sleep most nights these days but it isn't restful & I don't dream anymore. I have CREST syndrome disease, chronic fatigue, pain, etc. migraines, joint pains, etc.
I try to keep at the top level of my conscienceless that my man wants to fix it. It helps me be more understanding & patient with him especially when the day before was awesome, but today is a total train wreck. In the next minute my pain could soar into 10 level. We just this week had to cancel a long weekend away because of me. Am I to feel guilty for the rest of my life?
Silvrrry- I know right??!! I am sorry you weren't able to go away. To the "normies" going away is relaxing & restful. For "our kind" it can be incredibly stressful & off putting. I hope you get to go away though & it's restful for you both!
I don't dream anymore either. I should clarify though—usually I'll have a few nights a week where I get at least 3 hours of sleep, but it's on really bad nights that I only sleep a half hour. It's really hard to function day to day, but I've been doing it for years because that's what I have to do. Once in a while I'll have a really good month and get 4-5 hours of sleep on average, but those are lucky months.
I have PTSD, and suspect that I have fibromyalgia (I have yet to be diagnosed). I have chronic joint/muscle pain, terrible fatigue and various other symptoms that I need to take to a specialist.
I've tried all sorts of things to try to sleep, but I have yet to find something that works well.
Autoimmunerrrr, thank you. It brought tears to my eyes what you wrote. You are so incredibly spot on. I nearly had a panic attack at the thought of everything I would have to do to prepare & the traveling hours 3-4 & the medications and on and on......
Arvid- I have all that and then some! Argh it's so rough... Have you tried meditation? My brain goes a mile a minute so I use - when I remember- guided meditations. They are the best! (When I remember of course 😉) Also on days that I remember to walk with my furbaby's 🐶🐶, I sleep better. Either for 5-6 hours interrupted by pain OR I sleep for 10+ hours uninterrupted & awake to so much pain I can barely get out of bed to get my meds. It's a crazy cycle! When does this ride stop? Cause I want to get off of it! 😋
autoimmunerrrr, I have no idea when the ride stops, but if you see a bus stop coming, let us all knew so we can all get off together!
I tried yoga, but not meditation. Yoga makes everything feel better for an hour and then get drastically worse for a whole day afterward. I suppose I could try meditation, but I have a really hard time not thinking about things, if you know what I mean. Maybe that's a signal that I need to work on that.
Another problem is that I currently have a roommate that doesn't have a consistent sleep schedule so she wakes me up, or I have to leave the room if I'm in too much pain so that I don't wake her up.
I already do a fair amount of walking since I don't have a car. But I'm wondering if more exercise would help. I'm going to try swimming.
Thank you all, for "getting it." I have many DX with the FM now it's hard to know which is what - constant pain in spite of three months with a pain clinic that's daily up to 9-10. Insomnia followed by severe fatigue, surprising since it's usually just dire fatigue. Trying to remember what to do moment to moment, hearing people speak but being unable to interpret it as English. (I'm from and in the US) And yes, I'm the "fighting the good fight" or a reasonable facsimile, so others don't feel so bad . . . because that makes me sad. Feeling guilty for not keeping up, not doing my share, not being able to take care of myself, though I'm shockingly competent at random things, at utterly unpredictable times. Do you get this? And then at any point the FATIGUE knocks me out completely. Deep Breath: This Too Shall Pass
Arvid- I tried yoga ONCE and I'm with you, I felt fabulous for about two hours! Then the rest of the night & all the next two days.... I was in the worst pain ever. I really thought that I could die right there. It was true torture really. I won't be doing that again ever. So comforting to know I am not the only one. Phew! At first I was ashamed thinking I was terribly out of shape. I walk, when I remember! And i feel real good after. Plus I will get some resemblance of sleep. You hit on a strong point about meditation. It's like riding a bike, the more you do it, the less you fall off, or in this case the less your mind wonders. I started a minute at a time each day, until my mind was completely quiet for that minute. Then pushed to 5 minutes for the same thing. I am up to 30 minutes now with the 5 minute intervals. I would be happy to help if you ever want to connect outside of this forum. If that's allowed. I don't have a lot to offer except what works for me.