What is the worst Fibromyalgia sympto... - Fibromyalgia Acti...
What is the worst Fibromyalgia symptom for you? This is a single choice poll as we are looking for the one issue that is worst for you?
TheAuthor668 VotersPlease select one:
For me it has to be fatigue without a doubt. As an insomniac I find that my sleep pattern has worsened since the onset of my Fibro. I can live (to some degree) with my pain but sometimes I find it impossible to function with my fatigue!
All my hopes and dreams for you all
Ken x 
I'm the same, it is so horrible, I have just taken another sleeping tablet. X best wish Ken
Hi Erica/Ken. thank u both for your kind words - it means a lot when one's suffering. just out of interest, i've recently started on Nortriptyline (a neuropathic analgesic, anti-depressant and sleep inducer) and i think it's helping the pain already. i asked my new GP for Amitriptyline & she said that Nortriptyline is an improvement on Amitriptyline. will post later if it continues to help. good luck with the coping with the pain.
Mine is fatigue without doubt, I can manage my pain that I can get on with life without it bothering me so much but the fatigue is horrible. I still feel like I can't function as I am so tired/exhausted but can't sleep either. It's a never ending battle.
I agree and can completely relate to what you are saying my friend. It can become a nightmare at times. I want to genuinely wish you all the best of luck.
All my hopes and dreams for you
Ken
I can't sleep either, so I nape a lot! when I do my family says I lay in bed too much! then I try and do stuff around the house knowing that it will cause me even more pain then in return a horrible flair up that will have me so tired I can't do anything but sleep! then I'm told I did too much! if they would just learn about fibro, plus I have many other issues with my body chronic back neck pain, almost 1 year out of a huge back surgery my 3rd now getting ready to have knee surgery from falling in which lead me to finding out why I fall come to find I have a nerve in my rt ear that is 53% shot so I have to see a neurologist to see what I can do for that I have neuropathy in my left wrist which is causing me to almost not be able to use my hand at all and that's just some of my issues on top of Fibro! what a life Charlie Brown
Hi Me too ken been awake for past hour an half took pain killers for pain and stilll not sleeping xxx
Also for me. The constant tiredness is so debilitating . I go to bed tired.. Fall asleep then wake up about six times ..
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
Yep for me too it's the fatigue I like probably most if not all of us on here have a very high pain threshold I suppose that is the one good thing to come out of my violent childhood and mothers constant beatings coz you didn't dare cry or it was worse so I learnt to block the pain out, but not having the energy or the motivation to do anything is by far the worst for me as I was always a very active outdoor person. Wishing y'all a happy Sunday 😁
Fluffy x
So sorry fluffy, but I hear you, my family home was a war zone too. I am 55 now and it still effects the way I handle or dont handle my illness. Lets you and I just keep moving forward and dont let it hold us back. Xxxxx
Hi Fluffynotfat. soooooooooooo sorry to hear you had to endure such pain as a child. some parents have so much to account for, but i guess they do their best in most cases. i'm wondering, however, how you block out the pain?
Hidihi when I was a child I used to block it out by thinking of the school holidays because then I would go stay with my nanna,and grampa on the farm, now I use the same technique that I use when I feel a panic attack coming on I sit and sing in my head my favorite song which happens to be the theme tune to The life and times of grizzly Adams it conjures up images of all that beautiful wilderness and wildlife and I imagine I'm there and pain free, I know it sounds simple but for me it works, obviously it doesn't take the pain away but it does help to take the edge off 😃
Hi fluffynf: that sounds a great coping mechanism. it also feels that you have great visual imagination - that's a great gift to have. i'd say my pain threshold is possibly low, due to the accumulative symptoms. it gets to the point where i can't cope with all the fatigue & the pain together and then what i call the ''cognitive locked in syndrome'' - can't find my words to express myself, short term memory loss etc.
i hope you continue to cope as best you can
what a life stealer this illness is.
Hidihi
Do you have a bath 🛀 if so start by running a bath with Epsom salts light some candles around the bathroom and turn out the big light, get a portable stereo and your favourite song or cd and play it over and over while you relax in the warm soothing water, close your eyes 👀 and imagine you are relaxing at a spa or your favourite holiday spot, if you just relax and allow your mind to take over and think happy thoughts you too can escape, when I take a shower I sometimes close my eyes and imagine I'm in a clear lake and I'm under the waterfall it may sound silly to some but I don't have much in my life so it helps me xxxx
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
I'm with you on this. Luckily unlike some fibro sufferers on here I don't think my pain is so great, but the tiredness, and for me probably almost equally the confusion / brain fog, made worse by lack of sleep is the worst symptom. Debilitating and demotivating!!!!
All the best to everyone for the best week ahead you can have xx
Use to be fatigue but since taking Amitriptylene I can at least sleep now. My back pain seems to be hampering me more now than ever
How horrid for you. For me, a good night's sleep is vital as it's easier to cope with the pain!
Same for me, the fatigue and lack of sleep is hard to live with Buddymac
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
Unable to control my temperature I get very hot.
Yes, I could have used something like Hyperhidrosis in the poll? It is very unpleasant. I want to genuinely wish you all the best of luck.
All my hopes and dreams for you
Ken
Ye i have my window open even in the strong winds with just a thin cotton sheet over me .Hubby said its like a fridge in my room. but im still boiling hot mainly my hips and legs .Xxx
It is so unpleasant when you feel that way as it then becomes impossible to get to sleep as you are just so uncomfortable all of the time. Please take care my friend x
I agree Ken...when all we want to do is rest and too hot to sleep cuz ourinner temp feeling is off... And everyone else in house is blanketed up sleeping like babies.
It is awful, and very demoralising. Please take care my friend.
All my hopes and dreams for you
Ken x
l,m the same, legs and body thrashing about to escape the duvet, and heat, legs all over the place, against wall to cool. But at other times cant tolerate the cold, yesterday when feet cold walking about l,d spasms. But still the fatigue worst.
Yes...me you! Confession... I put air conditioning on in winter at night some times ( for a bit) justcool off the air up n my bedroom a bit. Wacky, but true
aha..i didn't actually realise that was a fibro symptom..that explains a lot..i just keep telling people that my thermostat is broken..lol.
I've got to agree Tishie, it's the inability to control the temperature. My bedroom is like a fridge and my legs are cold to the touch but are burning inside, and therefore can't sleep. Can anyone explain this part of Fibro?
From what I understand from reading up on it... Our hypothalamus Campus region of our brain is affected by Fibromyalgia and that's why we are very different from other people in regard to temperature regulation and what the doctors tell us in regard to our emotions....aka depression/anxiety if applicable. Both those areas are in the hippocampus area of the brain and they are directly affected by fibromyalgia. I'm not a doctor but when I came across this, I did some additional reading and looking up things, to verify with variety of sources. So, just my take, but it is best to do your own checking so that you feel like the information you have is as correct as it can be. Just put in something like, Why are people with fibromyalgia negatively affected in regard to regulation of temperature and tend to have depression and anxiety or simply put in an internet search that says, correlation and affect on hypothalmus with fibromyalgia.
Katherine
Thanks Katherine, much appreciated 😊
Migraines. Nightmare, they totally control me.
Hi Shazzzy, as a fellow sufferer I can genuinely understand that, and I am ware of the problems that you have had with crippling migraines my friend. Please take care of yourself and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken x
The worst for me is that medication (especially opiates) has a lesser effect.
Makes most if not all symptoms seem 5xworse as, although some, little relief is gained from medication in some cases. My doses are so high that they also come with their own side effects or heighten other symptoms which only add to the problem.
Ive tried to reduce doses of some medication and also swap them with the support of my GP but so far it's only made things worse with side effects.
I've considered asking about a detox to then start again but I'm sure this would bring a bigger set of issues and problems I don't think it would actually solve anything!
I have read that quite a few members have problems with medication. Please take care of yourself and I want to gneuinely wish you all the best of luck.
All my hopes and dreams for you
Ken x
Thanks Ken
I'm feeling more positive now I've seen my new GP a couple of times and he genuinely seems to understand my frustrations and wants to help me to become more stable.
He sees fibromyalgia as more of a physical condition that affects my mental health and not the other way around like my old GP.
My worst symptom changes with a flare or problem - right now it is due to nerve impingement and bursitis in my shoulder as despite my daily meds, increased doses plus breakthrough medication it's excruciatingly painful and got worse over last couple of days. I'm waiting for cortisone injections into joint and my usual cortisone injections in neck and shoulder tissue but I'm going to book an appointment with GP as soon as to make sure nothing is now torn or detached.
I'm hoping it's just me not responding to painkillers!
All the best
Clare X
It is wonderful to have a supportive GP, and hopefully getting the issues addressed.
That sound terribly painful for you at the moment. I sincerely hope that it all gets sorted my friend x
Do try emu oil on the shoulder. I had a torn muscle in my shoulder that was diagnosed by the hospital with ultra sound and after using the oil I no longer get the crippling pain. Maybe a twinge now and again but use the oil and it's gone. I also had the injections which helped for a while but the pain came back after about five months. I hope you soon get pain free.
What is emu oil?
Thank you for your suggestion, I can't see anywhere I can get it locally but my friend has just given me a pain relieving roll on full of oils and essential oils - I've got a bit of a head cold so it's helping with that at least. She used it after a badly broken ankle resulting in surgery from when her incision had healed and it helped her.
The next on my list is the emu oil and I can get it from Amazon 👍🏻
Thank you
Clare xx
I am waiting for the shoulder injections as well. My old rheumatologist would do them herself. The new one almost took a fit and said they had to be guided in with a camera. Will be getting them next month, but it has been a very long wait.
I d say fatigue as im so exhausted i could sleep all day and night. But the pain is 24/7 and i finding my back legs and feet are worst. It all such a vicious circle. Pain makes u real low. And when your low pain gets worse. But i just try and get through each day as positive as i can. Cos its so easy to give up and then u dont think lifes worth living anymore. Been there so many times. But theres your kids and your family aswell as yourself to live for. So try and look at the positive things in life. Pain doesnt get any better. But there are always people far worse off than me so i keep going. Had chronic fibro since i was 22 now 47. Made such a drastic change to my life. .i wouldnt wish this on anyone. But i sure wish people would try and understand it more.
Fatigue you cant work through, the exhaustion you feel is unimaginable unless you have fibro , pain you can work through , and keep going we've all done it !
Next is the lack of sleep which then brings on all the cognitive issues after weeks of no real rest your brain then starts to really mess with you !
I think you have just summed it up in one go there my friend? I think that we can all relate to this! x
Morning Ken hope you have a quite night , woke up , now ready to sleep again , just check in now hopeful can't stop yawning. , fingers crossed
Xxx
It has been very quiet! I am off to bed my self now. I am a bit late this morning? Night my friend x
Shadow-walker, you've nailed it in one ,that's how I feel and I couldnt explain it, have I not slept at night for3 nights this will be my 4th, but come 6.30am I snooze and nap all day, it is so horrible, I take 45mg of mirtrazapine at 8pm, and my 10pm night medication is 2paracetamol 2dihydrocodine 1tab 7.5 zopiclone 10mg amitriptyline and if I need it haha 5mgs diazepam and that has not even given me half hour in 3 nights. But at 6.30 I take it all again without the zopiclone, and take 60 mg duloxetine and I can sleep and nap all day if I wanted too, I tried taking duloxetine at night with no success, and g.p said morning. P.s and I take a stomach tab for reflux. It's a joke. So here I am again moaning , I just want some sleep haha xxxx
I was given an old fashioned sleeping pills as well , and they don't work 😳 Occasionally antihistamine knock me out but but I rear I sleep.
Just have to except and stop worrying about it.
Test as we can ,
Hugs
Chris x
I feel so Sorry for friends that cannot sleep, I could not function without it. At present its the pain that's the worst, it weakens me up every 2hrs but at least I'm getting more sleep than some of you. Going for a medication review again as obviously the dhydrocodiene is not working.
Well the say i have fibro but i seem to think its CRPS, not met anyone who wants to chop there limbs off with fibro plus i have NEUROLOGICAL FUNCTIONAL MOVEMENT DISORDER , they tried to tell me it was psychogenic but there is three other family members who have some of the symptoms and as MS runs on my mothers side of the family you would think they would do MRI scan , has taken me four years to get this far and getting worse as the months go on whole left side of my body now twisted dystonic neck left leg foot left shoulder fingers clawing into a fist , i could go but all you people are suffering , people ask whats he pain like i just say imagine having constant tooth ache 24/7 7 days a week but you guys will know that !!!! and all in all we have to keep smiling , My name is Ian i live in Newcastle upon tyne .
There are some times when I would chew off my own limbs if the pain would stop, but it won't.
I would find a new doctor. I have had fibro for 28 years. My friend has CRPS and you sound more like her. Good luck!
I am so genuinely sorry to read this Ian and I want to sincerely wish you all the best of luck. I would keep pressing for an MRI and see how it goes my friend?
All my hopes and dreams for you
Ken
I have more then one but pain is one of the worst as well as brain fog and fatigue when having a bad flair up I can not stay awake at all!
I too voted for fatigue as hardest to fight, but pain a very close second.
Fatigue is the worst for me. I do sleep, but could easily carry on sleeping and sometimes do. It just suddenly happens, I can be working, luckily I work from home, and tiredness just happens. There's always an underlying feeling of fatigue, sometimes I just can't function I'm so tired
Pain constantly throughout my body
I have fibromyalga secondary to my rheumatoid arthritis and all the conditions on the list are a challenge but people shrugging there shoulder's and saying that's nothing I get that you look OK get you down when you feel you have to explain your daily struggle
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
It was difficult for me to decide I voted confusion brain. fog because I felt it was one thing that I couldn't do anything to change this. but it was equal with fatigue. This was because I figured can take more analgesia for pain, sleep for fatigue etc. hope this makes sense.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
I'm finding it hard to separate pain from fatigue as the worst aspect, one day it's chronic pain then next day it's fatigue, I have to push myself every day. I wouldn't wish this on anyone but I so wish family would try to understand or conduct a little research.
Hope you all have a great day xx
Me too...you took words out of my mouth. They are directly affected negatively by one another. My doctor does not give narcotic pain meds or meds to sleep, as some people are able sleep with medicinal help...I am not... often wonder why US and UK are so different in that issue. Makes me want to swim for days across the he water to get some sanity through sleep and a slight chance of lesser pain now and again. I know that's not how it is for all in UK, but it seems like some of medical people will assist in flair up . at least. It only seems humane fir goodness'sake! Ok, this is far too long to be an agreement, of which, I do agree 100%. But obviously I had an opinion in there too.... lol
Hi Katherineanne, from reading some of the posts from the USA members, I'd agree there are hugely differing medical support practitioners, I'm very fortunate to have a fantastic GP and Rheumatologist as I also have SLE, both conditions appear to be linked.
What's your support like?
Your comments are never too long, it's heartening to read other members understand xx
My support right now is my Rhuemotologist of 7 years as far as medically. I am going to a pain mgmt appt end of February to see if there are options available to me that my Rhuemotologist hasnot shared. Can't take cortisone or any steroid shots cuz it will cause another prob for me...but maybe other things available. As for as support,technically my husband... He okay..but just doesn't get it. I did start counseling a couple weeks ago to try to help myself with how I feel etc in regard to what my world is now vs what it was. I do have some really good friends that I talk about things with, and they ask me how I am, but they don't know what to say and I actually don't elaborate on much because I'm not up for their discomfort. I don't know if that makes sense. I wasn't sure by the word support if you meant medical or personal, so I included both... Lol
I'm glad you seem to have a good rheumatologist and GP. I feel like I need to do more to feel better, not happy With my world...ebbs and flow with that throughout.
Remember though in the US, it all depends on what medical insurance you have paid for, and the insurance companies can dictate what treatment is allowed. As for those who have used up their insurance - or have none it can be extremely difficult.
Thank you. I had zero knowledge of that. That's awful. How dare a person in some office at insurance company decide how, as a general rule, treatment can be navigated with all illness' and disease. They are not even our doctor. Guess I am mirenaive than I thought. Thanks again, makes me see things s bit differently. I appreciate the information.
Katherine
I belong to a chronic pain / hidden illness group and it is quite sad sometimes when you hear how hard up they can be.
I bet. Glad you also seek support, good for you!
Helli Ken, I too have insomnia. It is directly affected by... made worse by its best friend, pain! The pain wakes me so many times throughout night that I can't keep count. Like one your replies from another member, I truly believe my insomnia at night and lack if energy/ fatigue throughout my activities during the day... Are absolutely affected due to my pain. My pain is directly correlated with the reason I have insomnia. If my pain was to go away miraculously, I believe my sleep would be improved
dramatically. If my insomnia/fatigue
was miraculously gone and all if a sudden I slept fir hours,
restoratively,well and felt rested ipon waking and was not chronically awakened/unable to sleep due to pain...then I am certain my pain would
be decreased in intensity. Yes, they are best friends in my worst category/symptom with Fibromyalgia.
I agree completely with that sentiment also, I genuinely wish that we had a chance to put this into practice? Please care of yourself my friend.
All my hopes and dreams for you
Ken x
Fatigue for me but, like shadows-walker says, everything has a knock on effect! I think unrefreshing sleep, lack of sleep is a killer and although I've come off most meds I still have my zopiclone and diazepam for desperate days. Someone mentioned detox which is what I did and was down to taking supplements only with varying results. Magnesium with zinc and coq10 definitely helped pains in chest (I do not advise to take this without seeking medical help and ruling out the anything sinister) my angiogram was returned clear despite low output levels on multiple ecg's . Epsom salts baths help pain in general so again Mg. My Ft4 (thyroxine) has always been low and for years I have been told it is within normal range albeit I have suffered hypothyroidism symptoms. Only since moving house and going to new practice has new doc put emphasis on symptoms and very low t4 rather than all other levels and I am now on levothyroxine - early days and no noticeable difference but I am hopeful for better sleep at least. I am also due to have a therapeutic trial of b12 injections next week again to relieve deficient symptoms. I am again in the 'normal' range for that too but NEW guidelines to docs are they follow symptoms rather than range. Again will wait to see results but in the meantime, not to be dismissed and to be given options is like I've died and gone to heaven. What a difference a new doc makes. list of symptoms written down/emailed along with hyperlinks to innovative articles I think have made a difference and hit a nerve. It's rubbish that what little energy I do have is spent on researching for help 😢 Just hope it's going to pay off!!
Having been diagnosed with CFS/ME and fibromyalgia (the evidence I see there are definite crossovers but perhaps not one in the same) I found the article (very long) below extremely upsetting but enlightening at the same time. A read for a cup of tea without milk and a gluten free digestive!
stonebird.co.uk/hooper.html#GI
Sleep soundly.. And wishing you all a pain free day Jax 💕
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself my friend
All my hopes and dreams for you
Ken x
I suffer from severe neck, shoulder and upper back spasms. They're so tight, it locks my neck muscles like a crooked neck. When I turn a certain way, it will send shooting all through my neck, that are unbareable.
Just started getting spasms mysrlf ast several months. It is debilitating during event. You have spasms so many areas of your body...that must be exhausting dealing with all that intense, shocking, excruciating pain yhat also radiates. Just sending some care to you for a few minutes (or days) of relief....you deserve it and some peaceful sleep..soon!
Katherine
Fatigue is the worst. I find it affects my whole mind as well and everything is such an effort to do. Some days when it is so bad I think to myself "just get through this day and hopefully tomorrow won't be as bad". It makes it difficult to become motivated in doing anything but my husband is so understanding and really helps me through the day, wouldn't know what to do if he wasn't here - I probably would just stay in bed all day!
Agree as with most how bad the fatigue is, guess l,m lucky in the pain is dull most of the time for me, but the fatigue is relentless, last few days been terrible, dont know if envoiramental influene of having left over affects of a cold caught a few weeks back. l think you and others with husbands who are supportive are lucky, l envy you, l know its not the be all, but it helps a lot, in practicals and emotional support. It is hard on your own, more so when the fatigue makes socialising very difficult, little bit of energy used for essential house stuff, luckily shops deliver. l might be tempted to stay in bed till lunch time at least, but lve a little dog and cat, motivation to get up, feed and let them out, then its sit down with a cup of tea and often drift off to sleep again.
But like you and most l guess, tomorrows another day, another week, might be a better one, and spring not far away now, sure that might help.
I think you are right that when Spring arrives it will get better, or seem to get better! Having pets is such a comfort and they are such companions, we have a dog and I make myself walk her every day - I get such enjoyment watching her running about. It exhausts me but I'm glad I do it. I'm sure your pets help you get through the day.
hi Thanks, yes pets are a comfort, although when youve health probs a bit of a worry that l cant walk the dog as far as l,d like to, or if l,ll manage, but they do motivate, at times its just a run around the garden for her, but she,s a good life, spoilt, and l will try to walk her a bit more when its fine. When youve no partner and the house would seem empty or quiet, my dog and cats a comfort, and she makes me laugh when l,m a bit down, though often when l,m drifting off to sleep, she deliberately barks at me, or drags her stuffed dog to me and swings it till l get walloped with it, rude awakening, a very naughty little dog, l used to always have big dogs, preferred, but got a smaller dog when my last big dog a g.s, died 14yrs, all rescue dogs, small dogs easier in theory, but some can be naughtier, she,s a border terrier, threatened her l,m swopping her for a chiawah, cant spell it. Roll on spring.
Thanks for good wishes Ken, this mb helpful and reasurring, your hard work worthwhile
sorry pressed the wrong one there are so many symptroms but fatrigue hits me hard i may get 2 to 3 hours sleep if that so very tired ,
I hate the brain fog, I can take pain killers for the pain, I can have an energy drink when tired, but when I get brain fog and struggle to do the smallest of tasks I feel worthless! It effects every part of my life.
I don't get option of narc pain meds and don't use energy drinks, but I have had Fibro for over 7 years and I also have found thst I feel worthless quite often lately...and definitley "less thanthan and not good enough" I'm sorry you have those thoughts too! I think until recently, I was telling myself a different story in my head about this life I have...but this FMS has a hold on my quality if life... Fibromyalgisa may not destroy our irgans but It sure a heck feels lije it us....so why is it different? the trutj of day to day existence is not is non description to say the least withno energy. Confusion and big ol cherry on top of pain...intermingled throughout all or varied parts of our person... And that's why I think that I am struggling with the acceptance of my new normal...no happy about it one bit. Line you, I feel worthless if late. I wanted to say hello to you and let you know you're not alone. Sending love and care to today!
Katherine
I found it very hard to choose between pain and fatigue as they go hand in hand, so I voted for pain with fatigue a very close second. Thanks for setting the poll Ken.
If I could have voted for them all I would have.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself my friend.
All my hopes and dreams for you
Ken
I have that dreadful fatigue but the confusion it causes takes over. So i voted for brainfog
I voted pain, because it is so constant - and it was that, that stopped me working. I am lucky in a sense that the meds still knock me out so I sleep all night.
It was the difficulty in getting washed that was the final straw.
That said I am always tired, but I have an understanding partner which makes the world of a,difference.
Lack of refreshing sleep is my bane. I find if I have a particularly bad night all the symptoms of fibro are intensified.
This morning I finally dropped off about 5 o'clock and by seven I was awake again. Hubby made me a cuppa and I went off again until about 9. I feel rubbish today, everything is too much effort, can't think, can't do much physically, just want to be left alone.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself my friend.
All my hopes and dreams for you
Ken x
Fatigue too. Pain is manageable. But to feel exhausted all the time is so hard
When I was first diagnosed with Fibromyalgia, I was crippled with pain. I had all the other issues as well, but it was the pain that held me back with life, walking I could not do at all, and with the pain no sleep, memory problems, fibro fog, depression, anxiety etc. etc.
The pain is still there, and everything else, I have been told I will need a wheelchair as I will get worse. every now again I get Lydacaine injections into my spine and they do help, even for a short time.
Lurganlass, I have these same symptoms. My mobility has just slipped away, it's awful x
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
For me it's the never ending pain every mins of every day which stop's me doing the things i used to do that make's me feel so old and useless and miss the things i use to do .lake of sleep has always been a prob for me for many years so i'm use to it and some of the other stuff it's the pain all the time and nothing work's to stop it
Me too. It's so life affecting!!!
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself my friend.
All my hopes and dreams for you
Ken
Ken ,I too have no sleep my average is 1 and quarter hours a night ,sometimes I have 6 mins whatever I have I also very restless the little I do get is not good .I had four of those things equally so I could pick the never ending awful pain .Dont get a fit but it's great on one hand because I'm sure my kids think I'm joking when I say I only had an hour or no sleep .My daughter who has a toddler and a 5 month both of whom wake in the several times gets more sleep than us fibro people .On the other hand you realise just how little sleep you are getting .x
Yes, I agree...if you keep track of your sleep, its amazing we do what we are able to...no wonder our emotional and physical tolerance is so greatly affected.
Lack of sleep and then when I do finally manage it, it's dream sleep and then the slightest noise and I'm up again. Always tired always in pain. Some od the doctor's at my practice are truly supportive but there are others who treat it like a joke. When I have a flair I look at my grandsons photos to remind me why it would be a bad thing to take all my meds in one hit.
I've been diagnosed with fibro fairly recently, my main symptoms being pain and fatigue, fatigue probably affects me the most, as I too do not sleep well. I also wake up really hot at night and cannot get cool, I had put this down to the menopause, but I've not really suffered much from hot flushes, now I'm wondering if it's the fibro? I've not heard of this symptom before.
All are problems, but for me it is the loss of independence and having to rely on others for transport, care and other things. I have been so used to being the carer, having been a nurse most of my life, that it is hard to accept care and help now, It offends me and embarrasses me. I was a very active person, and I hate not being so any longer. This condition has taken my self-respect along with my abilities.
I'm sad to hear you are struggling and have list your independence. Do you have anyone that you can reach out to in person? Sometimes we end up so isolated,which is not good under healthy circumstances... Much less ad we are.
I am so genuinely sorry to read this and I can sincerely understand how this would affect you. When Julie and I go to the hospital now we have to depend on hospital transport, and it really upsets her that we need too. I want to sincerely wish you all the best of luck. Please take care of yourself my friend.
All my hopes and dreams for you
Ken x
i do have issues sleeping but my main problem is the pain..my shoulders are in constant pain but the burning pain that i get through my right elbow every now and again can be almost unbearable..i used to get it in my knees a few years ago but thankfully that has calmed down..i am having a lot of problems with my left hip at the moment but not sure if it is related and physio won't have it x-rayed..co-codamols and heatseemto help a bit.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself my friend.
All my hopes and dreams for you
Ken
it's the pain for me as it drives me 'mad' and keeps me awake.
Me too...since late spring last year...my sleep is like a torture chamber to think to lie down, but want to anyway because desperate to get some real sleep to help mentally, physically emotionally. You are not alone in this my friend. It is maddening to me.
Katherine
Hey there ,I don't know why but I never get stressed with it except when I get the pain that's like restless legs but much more painful and all over I do get stressed but not irritable as I'm quite laid back.Its just the most awful pain and I can't sit lay down , I just pace it's exhausting , it goes on for days . Sometimes you just want the long good sleep but it never comes does it . With the Fit bit it just tells you how little you do get , I'm not sure if that's a good thing , but it is making me move more so that's good , I'm doing it with my son and his new wife and they encourage me . I'm so way down from them but they are younger and in good health . X
Glad you have good family to support you. When I used the word maddening, should of said frustrating or idk. But I have a minor child to tend to, limited resources and a hubby I adore, but just doesn't get it....how Zi am affected... I have a really good attitude and do a jump through hoops throughout the day to do my best, and he doesn't have s point if reference to understand. So, with so little sleep....after 4 or 5 days of very little sleep... I tend to get loopy with answers,talking and tolerance for life on life's terms...how do you do it? I'm asking cuz if there's an answer or solution or a way to do it different, god bless you please tell me. I'm not sure of your age or what your obligations are but if you have very little that you are required to attend to other than yourself maybe that's the difference that there are lower expectations of you? I'm not being after saying this, I'm just trying to understand how you are able to deal with ongoing lack of sleep without it affecting your emotional tolerance and affecting you physically so that the pain is excruciating when those also No sleep. Also know that probably or treatment levels are different maybe... In Baltimore Maryland in the US they did not give narcotic pain relief for fibromyalgia nor will they give any sleep medicine to sleep. That may be one of the differences too because this there is something to help you with either of those then things can be better at least for a bit. I don't know any answers and I have said before I'm actually asking the question above so that maybe I can hear something that will help me. Sincerely, Katherine
With me it's the anxiety attacks. It now dominates my life. The pain I have learned to manage, the fatigue is hellish but as I'm no longer capable of work I have learned to pace so that I don't undertake too much at once. Plus amitriptylene ensures sleep, for me. Anxiety has made me constantly question myself and my movements. I have to force myself to go out. I no longer want to talk on the phone in case I forget words with fibro fog and get panicky. If I find I have to do something I haven't planned for I panic about doing it etc etc. I have never been like this before in my life and I hate it, and it's control over me 🐸
Me too! I use to go with flow in regard to changes unexpectedly coming my way...not so much anymore.
Lower back pain for me as that causes issues when walking and never seems to give up!
Interesting to read the many posts here and of course so sad at the plight we all find ourselves in. I voted fatigue like so many here. To be fair my pain is usually bearable, it's a deep ache that can make me feel fidgety and agitated - most notably when in bed. On those occasions I resort to Co-Codamol which I have when required. This doesn't so much diminish the aching and general discomfort but sedates me, so I achieve relief that way. Many here say they cannot sleep. I generally don't have a problem with sleeping except when as described above or when my legs start spasming quite jerkily and even violently. This symptom is due to my progressive spinal condition. My main concern is that no matter how much sleep, even quality sleep, I never feel refreshed. It's like I'm running on empty most of the time. Energy drives everything we do, at best mine is in limited supply. Others have said here how all this makes them feel old. I'm 57 next week and my mother in law who is 3 decades older than me has more energy in her little finger. My memory of being a different me, with energy, recedes by the day. I hate what I've become.
I know....I feel same way of late. Maybe Doctors should read posts like this. I don't get option of narcotic pain medicine in my part of US. I am so glad the UK has a heart in regard to excruciating pain. Love and care from me to you!
Katherine
Thanks, much appreciated, same to you.
Having had this for 30 yrs I have "managed" the pain as I had no choice but to keep working but the biggest problem is the relentless fatigue and sheer exhaustion coupled with the lack of sleep. At 61 I still have to work albeit less hours now but having to put on a smile and do my job with professionalism is hard with often only 2 hours of disjointed sleep. After a few days of this my body then knocks me out for anything from 12 to 20 hours of sleep and massive flares then we start again.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
I have several of the symptoms but being depressed and having anxiety bother my husband as well as myself....and I find that a double "whammie"!!!
Because I could only choose one...I voted pain, but I have fatigue, pain, depression, IBS probably in equal measures. I also have body heaviness? Seems to be different from fatigue, if I'm carrying anything however small, my arms can't seem to hold it...also I feel inside of body falling! ...????????
I hate the confusion and brain fog mostly because it makes me scared it wont go away this time. But I cannot sleep. Saw my psych dr and cried to him about it, but as always he looked like he wanted to run away except that he would have to run past me to get out the door, honestly!
Then he asked how my oncology counselling was going and suggested that maybe just going to the support side of psychological treatments would be better than seeing him for the medical side. I agreed as the guy consistantly has failed to help me through any of my crisis in the past until I got cancer. I just feel that if I could sleep I would feel better and be able to cope better. I am usually able to do relaxation and meditation to get there but I just cannot drop over. I have herbal or fruit tea in the evening and no caffeine from early afternoon, I have tried valarian but its just the dropping over that wont happen till 4 or 5 in the morning and then to get 6 or more hours if poss I am getting up at noon and half the day is gone. I notice that if I have to get up early I just dont sleep at all, which was happened the other day when I was seeing my psychiatrist hence the extreme scary (for him) and extreme upsetness for me.
Any new or revolutionary ways to get to sleep with any of you guys and I am ready to try almost anything.
Will pass on anything as I know it...unfortunately I welcome same info as my pain and lack of sleep are with me all day, everyday. Your not alone...sending love and care to you!!!
Katherine
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck with your treatment and recovering from your cancer. Please take care of yourself my friend.
All my hopes and dreams for you
Ken
Exactly the results I thought they would be that is according to how I feel personally with this illness the same proportions.
It's is very difficult to pick one as the symptoms are unbearable
Once you started feeling the fatigue then it
has an adverse impact on the concentration and memory
islotaion
Yes and lack of understanding of others that partly responsible for the isolation, your spot on with for me !
I think ignorance doesn't help either, I have to use a wheelchair when I'm out and get some dirty looks because a) they can't see anything wrong with me, and b) I'm a young looking 43 year old!!
Hi well my electric chair is due for delivery in next 24 hours , and I look forward to being able to wear makeup again and being able to look well again , I have struggled with with sticks and crutches for last 18 months and finally excepted that I needed a chair at beginning of January, people locally know how unwell I am , the thing I have upset with is that I have been able to have a car on mobility, I sold my manuel car and have spent £2,000 on lightweight foldable chair . some people I now considered not to be my friend don't think it's right I have a car more expensive than what I had , the fact it didn't suit my needs and I was virtually house bound . Makes no difference,
I was really excited about getting car and chair , took a lot of exceptance on my part , that I was in such need , it really soured the whole experience for me 🙁
Its so wrong they're jealous of the car, when you need it to get some quality of life back! I too struggled for a long time before my late partner persuaded me to get my chair. Try and hold your head high and not let their ignorance spoil your experience, even though I know its not easy.
Actually i can be very bloody minded , and it takes a lot for me to take offence and I tend to be to tolerate of others till its to late the only place for me to go is straight to I won't nothing to do with you ! And that's what I stage I feel I am with the praticula people,I feel very hurt , they are wealthy older women widows and have 5 holidays a year and I mean USA , Europe and coach trips in this country, and static cravan holiday in millionaire row in Newquay. And no I don't get invited,
It still astounds me how some people can be so selfish especially as no one knows what is around the corner
I always thought we come in this world the same way and go out the same way , and treat people the way I wanted to be treated!
But I was naive, in so many ways , but I still am not going to stoop to these peoples level.
I can't say it is because I sleep at night as with fibro you don't , but when I smile and laugh it's real , when I sympathise I mean it , and of course when there are tears there not false .
Life's to short for these people to be part of my life anymore,
Big hugs
Chris X
I totally agree, I used to be a carer and always treated people the way that I would want to be treated. I still treat everyone equally. Unfortunately there are a lot of people that are selfish and only think of themselves and what they can get. Like you say life's too short.
Big gentle hugs to you too Chris xx
Yes, your right. That definitely is a big one!!!
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
Oh yes, I forgot about that one as I don't really think of it as a symptom so much as a consequence. But definitely it adds to the misery big time!
And yes lack of understanding brings you down too!
Mainly pain and fatigue
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself my friend.
All my hopes and dreams for you
Ken
The pain is the worst thing for me. It is just there every minute of every day. I have all the other issues as well but the pain is so very intense.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
Also fatigue, by a mile, can cope with the pain, mine dull most of time, just now and again nagging. last few days have been horrendous, wondering if envoirament makes some days far worse than others, on such days it feels like l,m dying, drifting in and out of sleep, but overnight sleep pattern poor, sometimes waking at 5am after 3hrs sleep, get drink, feed pets, then falling asleep again, Saturday felt like drugged day, drifting in and out of sleep, disturbing, wondering what time of day it is. Today managed trip out to supermarket, leaning on trolley more shattered. Please let tomorrow be a better day
Is there a base line with it, when do you know youve reached it. Best wishes to all to keep strong.
When you say baseline, do you mean with the "new normal" with fibromyalgia will be for you? If that's what you mean, I recently, since joining this forum, have seriously wondered that too. It seems like so many people are completely debilitated with crutches,canes, scooter and wheelchairs. It makes me wonder why they do not considetr it degenerative because it seems to go downhill, as if it was.... maybe there should be another word like completely debilitating. I don't know. If you find out any information about what an average "new normal" will be, please let me know and I will do the same for you. It makes me feel like I need to question my future even more so than I was before... as to what will or will not be. Sounds like you might be feeling the same way
Katherine
You got it, lve found my energy motivation mobility decreased in months, shorter distances walked, more rests, shorter times out and back shattered, more sleepy day time, even on nights when sleep is reasonable, though it is often terrible, restless disturbing, Its quite alarming to feel decreasing abilities, increasing weakness, and if not for gp l,d be wondering if l,d cancer. l did know about the fatigue, but not the level it would increase at. lve also read about those who do spend days in bed, though l,m assuming short spells and get improved energy back after resting, but dont know if some are far worse than others or if they have a slow deterioration in energy, abilities. So wondering if l,m just having a bad week through a recent cold affects, or what. Cant imagine how those bedfast manage, but l guess theyve no choice and to adapt, one way or another, at present l,m just being posative and hoping l wont reach that level, but l did feel the increasing housebound state coming on, told the gp, but they seem so casual. Live in hope and maybe tomorrow a better day. But if anyone who has arrived at being bedbound, can you let me know if it comes to that gradually, and have you been told your a more severe case. and is it that rest that enables you to regain some energy again enough to be up doing things. Advice info appreciated.
Sounds like you and I are similar paths for what is to come and andect right now. I concerns the heck out of me too!
I've posted here before that I feel my Fibro is getting worse. I wouldn't say I get flare ups but I'm on a steady decline.
I am so genuinely sorry to read that sniffer8, and I would discuss this with your GP or Medical Specialist and let them know? Maybe there is something that they can give you to help? It sounds awful and nobody should be left to slowly decline like this.
All my hopes and dreams for you
Ken
Ditto, Katherine and sniffer 8, l feel the same and it is a worry, l do feel slightly better today than yesterday, small mercies, but its more weekly monthly that l notice worsening of energy and abilities, l dread if it gets worse, just hoping the fine weather, which cant be far off, will help. Also drs would take it more seriously, mine seem so flip about it, maybe others are more concerned and helpful. Seems to me if it doesnt have a terminal label with it, your left to it basically, whatever your circumstances, which mine dont even ask about. Some asked if they won the lottery what theyd get, usual luxuries, l,d have a gardener do heavy jobs, a cleaner also, a massuer, and as much as l appreciate nhs, l,d go private, quick attention, then a holiday home in the sun, tele transporter needed to get me there, l,ll dream on.
Ditto, Katherine and sniffer 8, l feel the same and it is a worry, l do feel slightly better today than yesterday, small mercies, but its more weekly monthly that l notice worsening of energy and abilities, l dread if it gets worse, just hoping the fine weather, which cant be far off, will help. Also drs would take it more seriously, mine seem so flip about it, maybe others are more concerned and helpful. Seems to me if it doesnt have a terminal label with it, your left to it basically, whatever your circumstances, which mine dont even ask about. Some asked if they won the lottery what theyd get, usual luxuries, l,d have a gardener do heavy jobs, a cleaner also, a massuer, and as much as l appreciate nhs, l,d go private, quick attention, then a holiday home in the sun, tele transporter needed to get me there, l,ll dream on
The constant pain gets me down but the FATIGUE is the worst. I've always bounced back from illness but this tiredness can put me out of action for weeks.
Me too! I'm a shadow of the person I use to be. Such a struggle day after day... even though I do my best to have a positive attitude....its tough, right?
Katherine
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
If I could I would av chosen two. As could not make my mind up out of pain or fatiuge
The chronic pain saps all your energy and your left with fatigue with a capital F
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
Feet and legs no question about it
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself my friend.
All my hopes and dreams for you
Ken
I think that my pain is harder to cope with when I am really fatigued
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. ,Please take care of yourself my friend.
All my hopes and dreams for you
Ken
I think the pain in my hip and back. Hard to choose just one
Hi my friend, I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken x
Fatigue
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
I have pain everyday and never have a break ,I am unable to do anything at home as I get very tried.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
I have lot pain like most off you its my hips ,waist,legs,back neck when I get up from my chair I can hardly move its awful you get so tired of it all I also have a blood cancer wich was onmy spine bottom and middle then spread to my pelvis had stem cell transplant in remission just now just waiting for MRI scan to c whats wrong with my leg as I get pain in groin then the leg gives way does anyone else get this ?I am hoping its not the cancer come back there is a red line under all my writing lol don't know why its there or if it will show up hope you non sleepers are managing to get some I also need to sleep some mornings after I get up just lay on couch .
Glad your cancer is in remission, youve enough without that, the pain that causes your leg to give way could be nerve pain, l think l was left with nerve damage after csection, also at that time started with intersticial cystitus, really when most of my health probs started, plus i.c. is often accompanied with fibro cfs, allergies, all immune probs, but l think surgery caused my nerve damage, maybe yours due to treatment, lve not had my leg give way, but have had sciatica, also restless jumpy legs some nights. we could make a film about sleep horrors. l can be same as you, oddest thing in waking up and using will power to dress, feed and let pets out, get my tea biscuit, all the while waiting or knowing l,m going to fall asleep for an hour on sofa, got to laugh or you,d go mad, getting up to back to sleep an hour later, lol, Best wishes.x
thank you ken so tired and in so much pain i cant think clearly just so tired sending softest hugs .
I can't really answer this one easily as I have both ME and fibromyalgia.
For me the worst symptom is usually fatigue and post exertional malaise which I relate to the ME. But I also suffer from brain fog a lot with the ME which is also much more likely to be present if the fatigue is bad.
But as far as just the fibromyalgia is concerned the worst symptom is usually pain.
As they both come and go and one can be flaring more than the other it's difficult to say what is the worst single symptom. I'd have to have about a top five I think.
All in all I'm not really sure any of those answers really describe it for me.
Gentle hugs to all
Margaret.xx
This was a hard choice as I could not decide on the fatigue or pain being the worst but chose the fatigue. Many days I feel like I have had a heavy workout and also walked for many miles and of course all with lack no sleep!!
All the other factors too are a nuisance! Typing at work then having brain fog and forgetting the spelling or someone that works with me their nname!!
Oh the joy of this Fibro - humour keeps me sane!
pain is the worst but i also suffer badly with fatigue and brain fog.
Fatigue... exhaustion is more like it!
plus lack of sleep!
I'm in constant pain even with meds, so that is the worst thing followed by fatigue but being unable to sleep makes fatigue worse
From Vicki x
I am so genuinely sorry to read this and it may be beneficial to discuss how you are feeling with your doctor or Medical Specialist to ascertain if there is anything that they can give you to help ease the pain somewhat? I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
Thank you ken,
Fatigue without a doubt. I can take painkillers - on the whole the ones I take are good at numbing the ache. But it's the crushing fatigue that can come on out of nowhere, even when I've slept well (and I tend to sleep quite well - I feel for those who don't. I've had bouts of insomnia and I truly believe there's nothing worse.). And with fatigue there's absolutely nothing you can do... no pill and it's difficult to explain to someone when you've done nothing....
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself.
All my hopes and dreams for you
Ken
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Yes, I agree with you. I think it is a case of the fatigue voters have replied to the poll thread in greater numbers?
An insomniac for decades, once my GP had got the Amitriptyline levels rights for me so I could get several hours sleep per night, we could then move more forcefully onto the pain which was excruciating and exhausting. More sleep meant that I could handle the pain better. Messing about with the painkillers has taken 4 years of constant tweaking, and then reducing as my weight has come down steadily. The side issues have been bladder issues and brain fog. My concentration levels were never good but are alot worse now, even on good days. 4 years of pelvic exercises have not helped the bladder situation as much as hoped. A slow bowel is the pits thanks to the chalky pills which slow things up, so laxatives are a must to ensure tummy health. Eating healthier foods has been great for energy levels. Without a doubt, giving up work and not being constantly stressed by office politics and bullyboybosses has been a good thing too.
Am a 20 year veteran of all this pain and aggro. The past year has been the best ever in that time. Shame it took so long to sort things out!
Is there anyone out there like me , gone from 15 mg presilone to 5 and feeling all my pain returning, so concerned as I've put on a stone in 4 months .
Hi Scrumpy
I am taking 10mg of Prednisolone for my Asthma and COPD (maintenance dose). It does nothing for my pain but it does help slightly with my breathing. Please take care of yourself.
All my hopes and dreams for you
Ken
Daily, I would say it's my loss of independence that's the worst symptom-although it's not one that they tell you about in any leaflet or books! That said, in honesty it's my pain that stops me from doing things-sometimes I try anyway thus leading to an immense flare, and then the fatigue takes over! Can't say any 2 days are too much the same-my new consultant has suggested that my neurologists diagnosis of Fibromyalgia Chronic Fatigue is too widespread and wants to put me I the bracket of one or the other x
Fatigue
Pain
Hi Scrumpy1975
I am so gneuinely sorry to read this and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
It's the not being able to sleep - anything else I can cope with
Ethe worst pain for me is in my feet and legs
Without a doubt it's pain. maybe i could take it better if there was a pattern or just one type of pain. I know i must be speaking for many of us who try to cope and get a handle on our pain. Mine is sometimes everywhere and from out of the blue. Then only my ribs and hips. or just my wrists, calves and knees! Sharp like nails or maybe other times like bruises. Whatever your type is, fibro family, it SUCKS and it's individual and unique to you. No more whinging...
All my love and good thoughts always, to my fibro family,
P
Good question Ken
I found this really hard to answer because Pain & Fatigue are both major problems and I think I'm going to say pain because I think if the pain were more controlled I would sleep better. The pain wears you out but can't sleep because of the pain. Its like fighting a constant battle for me !
So yeah PAIN
Chronic pain!
the worst sympton with the fibro i have is the severe cramps and spasm they are so hurendous.
feeling ill
The worse thing for me is the chronic pain which is 24/7. Doesn't matter what pain killers I take nothing relieves me of the constant pain.. The only time I'm free of pain is when I'm asleep, that is until I come to turn over then BAM!!!!!! its back.. And getting out of bed is the worst time of day.. For me the pain is the worse part of having fm followed by chronic fatigue x
I'm with Ken fatigue is the one for me. I have lived with pain for so long it feels, in some ways normal. The bone aching fatigue that leaves you unable to function is the killer for me. It stops my mind from being free and traps it into that mental fog, where you wander around looking for the exit.
Pain
The feeling like its in your body and pain you cant controll and it takes over
As someone, NOT suffering from fibromyalgia, I'm interested to read the responses to the Author's question about which symptoms are worst.
Surely, pain relief is at the very ROOT of ALL the other symptoms ! Chronic pain, whatever the cause, is extremely debilitating & inevitably often leads to mental & physical exhaustion, stress, insomnia, depression, loss of appetite, brain fog & FATIGUE ! HOWEVER, if one already has unresolved childhood abuse issues then that does, of course, complicate the issue & make it more difficult to deal with the pain. That's why I do so hope that all of you who have had such abuse have had access to sympathetic & supportive counselling to help you to heal & become stronger 'survivors' rather than traumatised 'victims' using sometimes counter productive coping mechanisms.
I am really concerned at the possible very unpleasant 'numbing' psychological/mental side effects that many people must be experiencing in exchange for a minimum of pain relief with the present available 'analgesics' since the withdrawal of coproxamol with its wonderful pain relief with so few side effects !
I can cope-ish with the pain, insomnia is normal life now, but the depression and anxiety is crippling. I'm a mess when it gets really bad, and it has hospitalised me in the past. But the anxiety and depression is made worse by the confusion/fibro fog and everything else. X
Sleep issues, tinnitus, intolerance to exercise or even doing house chores.
wow I am that pie chart!
The weird feelings and restlessness in my legs which accompanies the pain... Eeks
