Hi everyone,Hope you are all feeling as well as possible 💛 I was wondering if anyone else has these issues because of fibro. They are driving me a little crazy lol. They used to happen on and off when my fibro was worse, but have been happening pretty much daily for the last almost 2 years.
- eye pain/fatigue and eyes opening instead of closing when trying to relax/sleep (this one feels like torture 😩 makes it almost impossible to sleep even if I tape my eyes shut because it's like the muscles inside are forcing my eyes open. I have to wear an elastic headband around my eyes or sleep with a rolled up t-shirt in front of my eyes and keep my hands pressing into them to keep them shut, and they ache so bad! Tape hurts my skin. At the worse times I've had trouble watching TV or looking up at eye level to have conversations because of eye fatigue/pain.)
I can never seem to get the muscles that move my eyes to relax and they don't relax when I'm asleep either, I'm constantly dreaming and waking up countless times in the night and every time I wake up it's hard to fall asleep again due to eye strain and pain and inability to relax and close them.
- jaw suddenly clenching in my sleep and biting my tongue (this is so painful and wakes me up and dread going to sleep because of this and the other issues). Sometimes limbs randomly jerking and waking me up too, lol
- vivid, weird, super detailed dreams and nightmares, constantly, even when I'm just in between wakefulness and sleep (as I finally start to fall asleep, I start dreaming, and often I realise I am falling asleep because I'm dreaming but still half awake and I'll think, "yes! I'm falling asleep!😁" and wake myself up by thinking haha)
- itching, random itches all over as I'm trying to sleep which also keeps me awake or wakes me up if I'm only just falling asleep. It's not only where my sheets touch my skin, but anything touching my skin makes me more likely to itch.
If anyone has any ideas how to manage these please let me know 🙏 the only thing that helps the eye pain is when I go to the sauna or other heat, which is good for most of my pain but doesn't last long. I think my jaw is so tense from talking and eating and I can't seem to fix it. The dreams.. I just don't wanna dream anymore, sometimes I don't know what was real or what was a dream because they're so detailed and vivid and if I take anything to help me sleep, even natural products, the dreams are worse. I haven't tried anything for the itching, maybe cream would help even though I don't have dry skin, but I haven't brought myself to trying cream as it hurts to apply it, my arms and back and shoulder ache and burn from the effort.
I'm trying a no sugar, no gluten, no dairy beside Greek yoghurt diet and seeing if it helps. I think I need to practice and learn to relax more, too, which is hard🙈
Thanks for reading and for any replies xox hope you all have a lovely day! Xo
Edit: (sorry, I know this is long already) just some extra info about the eye issue, if I try to close my eyes it takes a lot of effort and within seconds my eyelids/the muscles around my eyes that close my eyes are sore and fatigued and shaking and it's impossible to hold them shut. It even hurts to blink, but I don't notice it too much because a blink is so quick, but the more I blink the worse the pain around my eyes gets. I think this is my most unbearable fibro symptom. Anyone else get this?😕😕
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Turquoisesummer
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Yes, they all say, "oh that's weird," lol but have no solution. I saw an optometrist, an ophthalmologist, 2 neurologists, and all said there was nothing wrong and knew no way to help me. Thank you for your reply.😊
I was going to suggest seeing an Opthalmologist or Neurologist but I've just seen your answer to that which leaves you at a bit of a loss.Did they give you any Nerve Conduction tests to see the issue happening or help to rule out /in possibilities for treatment. It might be worth asking to be referred to Neurology again to have these tests done if not.
It may also help to request your GP to do some blood tests including ANCA/ PANCA tests to rule out certain nerve issues , and tests for Vitamin D ,,Magnesium , Electrolyte/ kidney function and Vitamin B 12 and Folates as low levels of essential salts or these vitamins can make Neurological symptoms to do with a long term illness more severe.
Ask for the results , don't just rely on them saying things are normal if the results are in range as if the result is low or borderline it may just be too low for you as an individual and supplements could help.
If you don't take a combined vitamin and mineral supplement, including copper and Selenium yet , try doing so , taking it after your fattiest meal of the day to help get maximum absorption.
You may also find improvement if you take an extra Magnesium and vitamin D supplement.
Drinking the recommended water intake each day is also vital for nerve health . Sometimes you can be dehydrated internally even if you don't feel thirsty and eyes are particularly sensitive to that.
To help prevent damage of your mouth, or jaw pain, it would be worth getting measured and fitted for a nighttime mouth guard by the dentist to wear while you sleep. It can reduce both the clenching and the dental wear and tear it can cause.
Try finding a soft well fitting eye mask for sleep instead of a band or shirt as this is less likely to slip or cause more eye soreness and headaches because it is too tight.
Using relaxation and breathing techniques and stopping use of any devices , phone or TV , for a few hours before bed will help your eyes to relax and cause less nerve responses as well as improving your sleep in general.
Keep your room dark with no blue light from screens or alarms, go old school with a quiet clock instead.
Using a warm compress ( soft cloth having the hot water wrung out) also soothes the eyes and twitches , I use it when doing breathing exercises a couple of times a day or when the eyes feel sore.
You can try slowly moving the eyes from side to side and up and down while the kids are closed under the compress which can help to strengthen the muscles and improve your eye lid response.
Are you on any medication that could help reduce the nerve responses as well as helping your Fibro pain?
It would be surprising, but not totally a shock , that they hadn't started to give you some form of nerve relaxation medication to treat this.
I found many of my twitches , eye flickers and jaw issues reduced when I began with low dose Garbapentin for Trigeminal Neuralgia. Since then I was diagnosed with Fibro too and swapped to Pregbalin as it is easier on the stomach and makes me feel less drowsy in the daytime . I also take low dose Duloxetine which increased how well the nerve twitches were controlled as well as helping the pain.
The Self Care techniques , taking the vitamins , and also reducing screen time in the day to short periods all helped to stop this for me. Taken at the right time in the day a nerve relaxant treatment can also help you to sleep.
My issue with twitching was totally controlled after they discovered I also have Vitamin B 12 deficiency anaemia and I began injections for that , I can tell when the next injection is due because mild twitches start again in my limbs and face.
Some people find Amitriptyline helpful at night , but it made me more twitchy. I do take an antihistamine at night which reduces my skin itching and hypersensitivity responses also helped improve my sleep.
Hope that helps and you get some treatment soon , take care , Bee
Hey Bee, thank you so much for all the advice! I will try to take all of it on board. Super appreciated😊I'm not currently on any medications, I had some bad reactions to previous ones and seem to be very sensitive to anything.. but I'll consider trying something different and also the supplements.I might try to see another neurologist, too. The first one just looked at me and said it's not neurological, I can't help you, without doing anything lol, and the second did an mri to check for tumours and I think he tested my knee reflex but that was all normal so he said he couldn't help, too.
In the meantime I'll try the other things you suggested, thank you so much
good morning Turquoisesummer🤗sounds like you could do with a very very gentle hug. Oh my goodness how you cope with these symptoms is beyond me! Especially the issues with your eyes🤦♀️I understand where you are coming from with the burning 🔥 in your body as mine is in my shoulder blade area and top and bottom of my back. I so wish I could support you more with information and I just hope that someone replies that can 🙏as I really don’t know how you are functioning.
I have terrible dreams/nitemares too and they are so frightening that I am also scared to go back to sleep. Sadly these are from trauma in my life and I have ptsd. I haven’t had time to read any replies as I’m having to go to work 😫love my job but hate what it does to my body 😫am off on a/l next week though and I’m so ready for it I can’t wait to finish today, sorry gone off track, I hope you get answers asap. 🥰🥰xx
Aw hey Cotswolds25121! Thank you so much for your reply and the gentle hugs 😊😊 it means a lot just to have someone understand, even if there's no way to help 💓💓I'm sorry you have nightmares too! I also have ptsd and I think that's the cause and I understand not wanting to go back to sleep.. it can be so terrifying when the nightmares feel so real
Aw I'm so glad you get to do a job you love but also sorry it affects your body so bad, it's so tough living with this condition hey? I'm so grateful for this community, don't know what I'd do if I hadn't found you all and the support and understanding..💗 I hope you enjoy your week off!! Rest up and do whatever you feel you need to do! Thanks again🥰🥰xx
🤦♀️I have just replied to your lovely reply and I don’t know what I do but I’ve obviously pressed something that didn’t send it🤦♀️I don’t know why this keeps happening but know that I did reply and don’t know how to retrieve it🤷♀️it was a long msg lol too as I do tend to go on 😁but please know that it was giving you all love, hugs and support ❤️🤗let’s see if this goes through 🙏🤞🤣xx
I have cervical dystonia which affects my neck but there is a dystonia that can affect eyes mouth, tongue and jaw, it’s a neurological condition it’s worth mentioning to Dr as it’s very under diagnosed took me 3 years !!!
I get all of that you mention have done for years. Very frustrating, painful, tiring, depressing Yes, i know what you are going thru. Did you say itchy skin? try an antihistamine, instead of scratching leading to scarring, use a cold clean wet flannel, rub that over rather than yr nails. When its been full length of legs i have draped a cold wet towel over the top of them and when itch got to much to ignore id give a quick rub over the towel and usually it would calm down awhile. Icepacks wrapped in a cloth so doesnt 'burn' skin, that should help cool down the itch. Im lucky if i get 2 unbroken hours sleep in 24hrs. Doc says, even then im not sleeping im just resting which is better than nothing at all.
What are the 5 cycles of sleep?Sleep occurs in five stages: wake, N1, N2, N3, and REM. Stages N1 to N3 are considered non-rapid eye movement (NREM) sleep, with each stage a progressively deeper sleep. Apparently i rarely get past NREM2 I think 3 is dream stage? Dont think i ever hit that stage? But them areas where you dont know if it happened or not..... i get them a lot just lately. I'm a nodding dog..... mid typing, chat, food, colouring, sewing i kinda 'blackout' for anything up to 5mins. Wake up wearing my coffee, or my baccy all over the floor or a ink mark right thru picture i were doing, hence ruining picture, rows of aaaaaaxxxxxzzzzzz ect on keyboard when ive been typing in chat, ive come round not knowing where i am. I feel for u lass, its no fun, we are all different and we just have to deal with our symptoms in whatever way works for us. We try each others ways in the hope they work for us too.
Hi ANJI-UK, thanks so much for your reply and suggestions. I will definitely give these a go. I'm sorry you have been/are going through the same kinda thing😔 isn't it awful trying to sleep but waking up even more tired than before you slept.. I hope things get better for you, and thanks so much for taking the time to reply x
I totally understand ! I was taking medicine (Pregabalin) and it helped but at the same time as soon as it started to build up in my system I started to feel weird things like itching, jaw hurting worst than normal, depressed, anxiety (more than usual). The tiredness was horrible 😞 and I gained 15 pounds. Now I am trying to loose weight and I has been impossible ☹️.
Unfortunately, the side effects are worse than the illness. In my case.
Now I am using cbd and I was able to stop Pregabalin and tramadol. I am very grateful. If you have any questions please don’t hesitate to contact me.
Hi Saisa! Thank you for you reply😊 I'm sorry you've had bad experiences with medication. Me too, tbh, which is why I'm currently not medicated. I've been considering CBD, but here you have to go through a clinic and they charge a lot and I've been unable to afford an appointment since being off work, but to hear it's helped you is awesome and I might just have to do what I can to try it. Appreciate you😊 tysm x
I was going to say, check the side effects of any medications you're on. I know I used to have weird dreams and anxiety (amitriptyline). The body jerks etc I have no idea although I only get them when I'm overtired..
Most of those symptoms that you now have are the same as mine. My nightmares have now stopped but now I have nice realistic dreams, but I am sure that towards the end of the dream, I wake up and the dream carries on! It is nice. My itching is eased by E45 Itch Relief cream. Only a small amount goes a long way.My eyes play up and what I read goes in one ear and out of the other. My eyes do not seem to concentrate.
I was so pleased that I am not the only one with such problems. I now don't think that I am going round the twist.
Oh, I'm really sorry you have experienced the same! ❤ I'm glad to know I'm not alone, but it's not nice to know someone else feels the same. It's pretty hard, huh? I'm soo happy to hear your dreams are now nice ones! That must make such a difference😊 I've been struggling after last night's all day today🙈I get the eye thing, today I read a sentence of a book I'm trying to read so many times I lost count but finally took it in..🤭
I will see if that cream is available here!🙂 You're not going round the twist 😊 and I hope things keep improving for you!!💛
Yes I have the burning sensation all over my face, hands feet, eyes feel like they have grit in them however for me the only relief I get from this burning is sleep
Yet I sleep and still feel like I’ve not been to bed
I 100 percent get werid details dreams often not very nice ones, I always wake up feeling out of place mad anxiety and have sweated ALOT, to the point I’m I the shower.
Do you sweat a lot? Like I have to take tablets (lol another tablet) to try and stop my sweating as it has led to skin infections from the sweat collecting in my groins (sorry for the details).
I definitely have had my jaw locked on multiple occasions but I always thought this was from my breakdown when I was unwell it was that locked and that painful because of the stress; being very unwell, at that time I didn’t know I have fibro so it’s interesting to me that you say that.
So werid how having this condition has made so much sense to me and how much comes with it that they don’t prepare you for.
But on the other hand although I know what’s causing it, I thought I’d be able to cope better but in fact it is still very unknown territory because you never know what’s going to happen day to day.
Going back to feeling isolating I’m not the “normal” 25 year old and that does mean I cancel ALOT of plans, I literally have one friend because all of my friends either are getting married, having kids or travelling and for me I don’t know if kids are on the cards for me.
Since being unwell I’m just not in the mood for sex, me wanting kids has changed I use to want them and now I’m like if it happens it happens, I don’t even know if I’ll get pregnant since I’m not having regular periods.
Anywho sorry for the big reply. Hope you’re okay. Sending hugs and love 🤍
Yess ugh the sleeping but not feeling like youve slept😑 the last 6 years of my life most days 😅 its the worst. And my family ask me why I'm not out of bed early and complain when I ask them to be quiet so I can sleep at night😬🤣🙈You have the weird dreams also? And yes I do seem to sweat a lot, especially at night, or when it's cold, or after a shower even though I end so super hot shower with pure cold water lol. I think fibro has just somehow made my body completely unable to regulate it's temperature? Coz I never used to sweat before fibro😂
And don't be sorry for the details... it's all natural and noone's judging 😊
I'm sorry you're having the jaw issues too, I do thibk it is related to stress.. the less stresed I am the less the fibro accects me🙃
You're right about that, day to day, we have no idea how we're gonna feel and that makes everything else hard too.. dealing with work (if we can work), making plans with friends/family..
And you know what I think those of us dealing with fibro know so much more than the doctors🙃
Wow, I'm so sorry again, I get that... I always wanted to be married and have kids and I know I'm already a bit old🤭 but now I've given up or at least not holding onto that dream because I'm so scared I couldn't care for children or be a good wife😕 and the guilt I would have if I had kids and a husband and had another bad flare and couldn't get out of bed to care for them.. 😥
I feel you love, and please don't be sorry for saying anything or talking as much as you need to..
stopppp you 100 percent can’t let this define you. You would be an ace wife and fab mum, your kindness shines through. I am very lucky to have my partner who has been nothing but supportive but I tell you I can understand how hard it is to maintain relationships with anyone as it’s not something you wanna bring up on your first date lol
I definitely did not suffer with sweating before or bad night mares so I definitely think it’s got to be fibromyalgia
I’m wondering if having my pregabalin upped maybe has caused the fire sensitivity? Or has my fibro just got worse and the medication isn’t working lol
Thank you.. so much.. 💜 I can't comment on medicication issues coz I've had terrible problems from meds and haven't been on any long enough to offer advice, I'm sorry. Also nightmares can be the worst, worse than real life🙈 I hope yours don't get too bad, lovely. I hope youre doing ok! If u ever message and I don't reply pls know it's just fibro fatigue😕❤
Literally no pressure to ever reply, I’ve not been one in two days. I’ve been really busy and I’ve been suffering with my soooo tired lol but also being on fire every single day is draining !
Hey lovely! I'm so sorry you still have the burning sensation, I wish I could suggest something to help. I hope you're feeling better too, and your reply helped me feel more calm so thank you😊 I've actually been feeling a lot better but putting all my energy into what's been helping and haven't been on here for a while and I feel bad for that🙈 I hope you've had a good week despite fibro doing its ridiculous things ! xx
Hi yes I have lots of same problems with my eyes, I’ve woke up to my eye completely blood red.
Went to spec savers and she said I had extreme dry which cause the film protecting it to break down and then causing bleeding.
I find I have a really scream out pain and I think it’s my eyelashes stabbing my eye probably due to the dry eye.
I do try a really cold/frozen wrap in them to try and soothe them.
There’s lots of random symptoms with fibro apart from the pain, fatigue and other health conditions that go hand in hand with it. I have random twitches heat regulatoring issues, ear problems, vertigo I’m sure there’s more back my memeory is terrible too 😂😂😂.
Aww thank you for the reply! I get the temp regulation and random twitches, too! Mostly at night 😂 when I'm just falling asleep (after hours of trying to sleep lol) my arm will twitch and slap me in the face haha or my jaw will bite my tongue against my will (ouch!😅), also random itches all over that seem to jump around as I scratch them, also mostly when I'm trying to sleep 🤭 the memory thing also, isnt fibro weird🤔🙈Take care, lovely!
I get the itch and super sensitive skin constantly , I get painful eye ache and struggle to open one in mornings (been told by optician my eyes are really healthy Im 61) I get the jaw problem and spasm and yup Iv suffered sleep paralysis before diagnosis of fibro....my body daily feel like my skin is tingling all over and internal tremors and I get vivid dreams ..the only thing I do is eye drops as for everything else have to plod on...I have since 2017 developed an increasing problem of chemical sensitivity to odours and perfumes and lots of things hand wash shower gels shampoos ,,and an intolerance to medicines so cant take pain relief aprt from paracetomol , also artificial light struggle with ..loud people and places are torture xxAll best I pray you get respite x
Hey Rainyru,Thank so much for your reply! I'm sorry you have the same issues! But it's comforting to know I'm not the only one. I pray you find relief also! It's definitely not fun, huh? Fibro is so strange, right? God bless you, lovely xx
aww bless you Turquoisesummer , yes it is a real strange Soooooo many symptoms Iv said to my Doc if I was to wrote down what I have every day no one would believe me !!...and no you are so right it's not fun but I still , as Im sure you do put a smile on and grateful for every morning...God doesnt give us anything we cant handle , but a day off wouldnt go amiss lol 🤪God Bless you too 🌸🌸🙏 xxx
Aww 😊😊 you're right, a day off would be amazing!! I've realised how much I took for granted since this thing hit me haha. If I can share one thing that has made a massive difference to me lately.. I went from being harldy able to walk to being able to do cardio and weights in the gym 5 days a week in the last 4 weeks.... alternating heat and cold- eg sauna (super helpful)/hot showers and cold showers! I don't know as it's just my anecdotal evidence I guess, but I've been doing heat for years which helped the pain, but my fatigue got worse and worse, but, I recently started alternating heat with cold and the difference in my pain, fatigue and other symptoms is amazing! Just sharing in the hopes that it may help if you haven't already tried this. I'm going to write a post that better explains why I think it's helping, but I'm also a but worried incase it doesn't help some people, but from my experience I believe it's worth trying!🙂Take care, lovely! Xx 🌼🌼🌼
i would be interested to read that , tbh Im not great with heat or cold saunas or steam lol but I would be interested to see..I have other limitations I cant do gym work botched ankle replacement my knees and back not good but I do what I can ..so post it many would interested I reckon xx
Thanks Rainyru, sorry to hear of those limitations ❤ maybe there are alternatives/ways around.. never know..🙂 I think most things can be adaptable to different situations/limitations hopefully ☺ thanks again lovely I will try to post over the weekend i think it would be worth it if it can help anyone or if anyone can adapt the ideas to their own situation and hopefully find relief xx
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Who else struggles to stay awake during the day?
Exhausting
Fibro family,
Fibro fog.
The dreaded fibro amongst all the rest
