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A DAY IN THE LIFE OF FYBROMYALIA

Posted , 7 users are following.

laura11452
laura11452

Hi all

So getting out of bed and walking around is a major effort..Thank God the house isn't on fire or I would look like burnt breakfast..OOh forgot to mention have headache and nausea and yes feel exhausted and have only woke up.

You think your having a good day and your energy is soaring to the point you feel you could walk for miles, clean the house from top to bottom, revamp the garden, decorate the house..

So off you go enjoying that you are able to do more than normal.. Having coffee inbetween ( well i do)..Having the feel good factor that your achieving so much today..WOW GO ME

OOPS you have spilt your coffee on the floor..So you get on your knees to clean it up..But how the heck am I going to get up again?? Even the thought of trying to get up is a struggle.. The pain and stiffness is unbelievable..My face is so distorted from the effort I know for sure this could be a Youtube hit for ugly..

Anyway off you go continuing with your day and this heaviness in your head won't go away and you are starting to feel weak and tired..

Go on have another coffee..Take a load off ( rest)

Just started to gut out a room and mess everywhere and I feel exhausted..Getting up the stairs is starting to become difficult because my feet and legs ache.. My arms ache and now my hands are starting to get sore..(thank god I can still hold a cup of coffee)

I want to rest in a chair to get my mojo back to do some more, but my neck and back or aching so not feeling comfortable to rest..The heavniess in my head is getting worse so I have to lie down because Iam exhausted..At this point all appointments canceled. But you get a phone call you have won a million pounds and it has to be collected now or you lose it..Guess we all know what happened to that lol..

So I wake up after my nap and WOW I still feel exhausted and cannot think straight. Not forgettng I feel like I have been hit by a bus now aching from top to bottom..( Get me my coffee pleaseeee ).. Oh that's right I live on my own..

I want to finish the room I have started to clean and now I am trudging and having to stop and start.. I have lost my mojo and feel like someone has popped me like a balloon and all the energy has left me..

I ache all over, feel weak, my head feels like I am zoned out, every move is a big effort, I break out in random sweats, I am frustrated, I feel like 90 years old, now I am crying where is my life??.. NO I DON'T WANT A COFFEE.. 

This was a good day in the life of Fybro ( you all know the rest) 

5 likes, 162 replies

162 Replies

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  • laura11452
    laura11452

    Posted

    Today has been a weird one as I have lost my mojo in that my head is sore and feels like someone is slowly switching my brain off.. Have had to sleep on and off today.. I was on my way to climb Mount Everest guess that will have to wait lol..

    Took my dogs for a long walk to try and take my mind of the funny feeling in my head.. As I would have felt the need to sleep again..

    So when you get that overwhelming tiredness  and funny feeling in our head does everyone just rest the whole day or try and get on with it?? 

    Having a few sleeps does not fix it..So wondering if trying to get up and on with it will make things worse or help ??

     

    • trisha87499
      trisha87499 laura11452

      Posted

      This is where my coffee comes into it, when I feel I'm tired, headache, and just wiltering, I have a latte and it just seems to give me a little bit more juice, because although sometimes you have to sleep during the day, my sleep is so bad at night always, so, constantly tired. That works for me just now, however there have been times and headache bad so need to sleep. I think we all try and cope in anyway we know how. Walking the dog a good idea though, it's just the thought of it sometimes isn't it?
    • laura11452
      laura11452 trisha87499

      Posted

      I sleep like a log at night considering I sleep on and off through the day.. I have seen myself try Red Bull and it never helped so I stopped..I don't feel coffee helps either..

      Yes walking the dogs can be chore but I feel guilty if I don't so that helps push me..

       

    • Magpie2me
      Magpie2me laura11452

      Posted

      Yes Brain Fog is an annoying symptom. I think that we have to be kind to ourselves when this occurs. Going for a walk oxygenates the blood so that is a positive. I also find that if I rest in these times and watch a comedy or a pleasant movie, like a Jane Austen one, that helps relax the mind. Just remember, the fog will pass. Sometimes in a few hours. Coffee helps me as well. Don't stress over it. Just manage it best you can. 
    • Amanda_Awake
      Amanda_Awake laura11452

      Posted

      I hate that feeling ..it's like your here but your not..nothing is sinking in and the world just feels wrong!!.It makes me so anxious and I find nothing helps even resting / sleeping or even my beloved coffee.

      It just gradually gets better.

      I sleep awful at night. If I do get to sleep I am constantly woken with some symptom or other..needing the loo...pain ..any noise however slight or the dreaded restless legs or spasms.

       

    • Magpie2me
      Magpie2me Amanda_Awake

      Posted

      Try some magnesium powder Amanda. It really helps with the restless leg s and cramping. It is also good for insomnia. 
    • Amanda_Awake
      Amanda_Awake Magpie2me

      Posted

      Thanks I will try it...where can I get it and how much should I take ?

      Restless legs are awful  and are worse when I am tired and want to sleep.

      Is anyone taking any meds for fibro ??

      I am only taking painkillers..I have been given amitriptyline from doctor but havent used it yet...has anyone tried it? 

      I really need help with sleeping but I dont like the sound of the side effects!

    • Magpie2me
      Magpie2me Amanda_Awake

      Posted

      You can pick up the Magnesium powder at a local health food store. I use powder because it is easily assimilated. Just mix some in juice. There usually is a little scoop inside. I take half a scoop before bed. I myself do not take any meds for the FibroM Amanda. I try to work with a holistic sort of approach. I do go and see a Remedial Massage Therapise which is more or less an Osteopath. He applies oils and massage and does cupping and Acupuncture. Cupping really helps with circulation. It is a glass cup that is heated and placed on the more sore areas. I have had some real benefits from this and the Acupuncture. I also take Turmeric for inflammation. I try to get the organic one at the H Food store and it is better apparently when mixed with food and heated in some good oil. So I have it in the morning with my breakfast. I do take a mild pain killer for the more severe migraines I get now and then. Soaking in a very warm Epsom Salts bath helps greatly with muscle aches. There are some really good people out there who do massages and such that know what they are doing to give us some relief. These approaches have helped me cope over the years. 
    • laura11452
      laura11452 Amanda_Awake

      Posted

      I get restless legs as well and pains when trying to sleep..I raise my legs with pillows and sometimes it helps..

      Its the trying to get the bathroom in the morning when you just get out of bed.. Always a reminder something is wrong with your body.. But thankfully after ten minutes it starts to shift.. and Iam not walking like a stick man lol..

    • trisha87499
      trisha87499 Magpie2me

      Posted

      That's so weird I watch a comedy or even a good old movie, and that takes my mind off it, and then a coffee, it does help to have a good laugh
    • Magpie2me
      Magpie2me trisha87499

      Posted

      Learning to give ourselves what we need to keep going sweetie. Showing kindness to ourselves in more vulnerable moments is the key.
    • Magpie2me
      Magpie2me laura11452

      Posted

      We seem to lack it. And minerals as well. I take a liquid mineral supplement every so often in juice too. Especially with the change of seasons. My mum used to say that women feel the change of seasons quite significantly. I believe her because I always feel more tiredness around those times. 
    • laura11452
      laura11452 Magpie2me

      Posted

      What is the liquid mineral you take?? Yes I woud totally agree with that and winter beng the hardest season..
    • Magpie2me
      Magpie2me laura11452

      Posted

      I take Lifesprings Colloidal Minerals. They are Plant derived so easily assimilated. If you cannot find that brand, Lifesprings, I am sure there are plenty of other brands sold in your area. I don't believe in taking heaps of supplements and vitamins. But I do think Minerals, Magnesium and Calcium, 250 mg Vit E for circulation and a ProBiotic are all pretty essential. 
    • laura11452
      laura11452 Magpie2me

      Posted

      Thank you.. No I cannot get Lifesprings Colloidal Minerals over here.. But will look into..I am on iron tablets and Vitamin D..
    • Magpie2me
      Magpie2me laura11452

      Posted

      I am pretty certain you can find a similar mineral supplement. And I think vitamin D is very crucial to overall health. I take 10 min sunbaths in the mornings every other day or so. I am careful with iron supplements unless I become anemic. So far blood tests are good. Nutrition is so important for us and giving our bodies what is needed. 
    • Amanda_Awake
      Amanda_Awake Magpie2me

      Posted

      Laura...stick man!! that is so me in the mornings and after sitting for a while in the same position!! Luckily it wears off..can you imagine walking like that all day...lol

      I have never had my vitimins or iron tested..maybe I should ask the doctor for these tests.

      I rarely go out in the sun so I must miss out on a lot of vit D..my sensitivity to bright lights awful.

      Does anyone else smell things strongly that others cant  and find food tastes different especially in a flare

      My hubby says the most dreaded sentence he hears is "whats that smell" lol  smells drive me mad !

    • laura11452
      laura11452 Amanda_Awake

      Posted

      Lol i know i am the same trying to get up off the floor or out of a chair..When I am at  at my worse i can't get a top over my head or bend down to tie laces etc etc..Thank God its settled..

      I was so ill I couldn't get out and they put me on Vit D..

      I find it hard to be in heat now and yes noise at times irritates me..

      Lmao I smelt something in my ktichen today thought it was gas..Sometimes i can think i can smell blood..I have days I can eat something and the next day i feel sick eating it.. i cannot eat fish at all now..i find it hard to swallow sometimes,,

      Does you doctor see it as a disablity?

    • laura11452
      laura11452 Magpie2me

      Posted

      They have had me on iron for months..No-one seems to properly monitor what you take because your jumping from one doctor to another..

      Sunbaths?? You mean sit in the sun for 10 minutes? and if so you are sooo lucky..the weather over here is like a lucky dip lol..

      I recently bought a Nutri Bullet not sure if you have heard of it..But you can make fruit smoothies with it and rthat si my way of getting fruit inot my system becasue at times my appetite is not great..

    • trisha87499
      trisha87499 Magpie2me

      Posted

      I agree, we are like machines, treat us with tlc and the better we work.
    • trisha87499
      trisha87499 laura11452

      Posted

      I saw 3 different gp's in the matter of 2 weeks and they had messed about with all my medication that I simply crashed and burnt. Now I am in control of what I take.
    • laura11452
      laura11452 trisha87499

      Posted

      I totally get that..I have been made to go cold turkey off a couple of meds at the same time and the side effects on top of everything was horrendous.. They are still changing anti depressant..think thats 3rd or 4th time in last two years..I read some where they don't even know if they work..
    • trisha87499
      trisha87499 Amanda_Awake

      Posted

      At one point I was on morphine, went cold turkey, now I take diahydracodeine, fluoxetine, blood pressure tablets and fybogel, sleeping tablets which don't work, that's what I'm comfortable with at the moment. I've tried loads of things a lot of them made me look stoned even though I felt fine, but not a good look lol
    • trisha87499
      trisha87499 laura11452

      Posted

      The only ante depressant that works for me if fluoxetine, depending on stress level I take 2 or 3. My own go that I've known for 30 years knows me and trusts me to get on with it with his support. But when he is off or unavailable that's when my problems start.
    • laura11452
      laura11452 trisha87499

      Posted

      Admittedly I don't feel as tired and foggy now my meds have been  changed which is probably why I had a few good days until I flaked again..

      I couldn't get one doctor to diagnose Fybro so I went to another one and he did..But if I want to see him I have to wait a couple of weeks

    • trisha87499
      trisha87499 laura11452

      Posted

      I know, my doctor is retiring next month as well, I begged him not to he thought I was kidding but I was not lol the things you do lol
    • laura11452
      laura11452 trisha87499

      Posted

      lmao mine retired a year ago and I was gutted..Met him in town and he asked how are you..WELLLL I couldn't exactly go into detail when he had stopped working to tell him I had the worse health year of my life " I am great" I said
    • Magpie2me
      Magpie2me laura11452

      Posted

      Yes I do sit in the sun. We do have plenty of sun here in Australia Laura. But Vit D supplements are a real good substitute for sure. Yes I think you have to be careful taking iron. If your blood test does not show anemia, just making sure that you are eating a bit of red meat and or plenty of greens, that should manage your iron needs. Yes Nuti Bullet is a craze right now all across the world. I think it is good to have green juices. My daughter is a health nut and she has green smoothies every day. I eat a lot of salads as well. I put spinach and heaps of veggies. Another source of nutrition I find is making chicken soup from scratch and having that pretty regular. I put chunks of ginger in it as well which is very good for fighting viruses and things we can pick up. 
    • Magpie2me
      Magpie2me laura11452

      Posted

      Yes I do sit in the sun. We do have plenty of sun here in Australia Laura. But Vit D supplements are a real good substitute for sure. Yes I think you have to be careful taking iron. If your blood test does not show anemia, just making sure that you are eating a bit of red meat and or plenty of greens, that should manage your iron needs. Yes Nutri Bullet is a craze right now all across the world. I think it is good to have green juices. My daughter is a health nut and she has green smoothies every day. I eat a lot of salads as well. I put spinach and heaps of veggies. Another source of nutrition I find is making chicken soup from scratch and having that pretty regular. I put chunks of ginger in it as well which is very good for fighting viruses and things we can pick up. 

       

    • Magpie2me
      Magpie2me laura11452

      Posted

      Yes I do sit in the sun. We do have plenty of sun here in Australia Laura. But Vit D supplements are a real good substitute for sure. Yes I think you have to be careful taking iron. If your blood test does not show anemia, just making sure that you are eating a bit of red meat and or plenty of greens, that should manage your iron needs. Yes Nutri Bullet is a craze right now all across the world. I think it is good to have green juices. My daughter is a health nut and she has green smoothies every day. I eat a lot of salads as well. I put spinach and heaps of veggies. Another source of nutrition I find is making chicken soup from scratch and having that pretty regular. I put chunks of ginger in it as well which is very good for fighting viruses and things we can pick up. 
    • laura11452
      laura11452 Magpie2me

      Posted

      Lol you shared your post three times..

      I would like to have green smoothies but need to take the time and come out with something that I would enjoy drinking..Have just got it so having fruit ones so far..

      I was eating very healthy and going to the gymbefore I took ill.. I have found my appetite keeps changing and somethings I cannot eat at the minute or get nausea..

    • Magpie2me
      Magpie2me laura11452

      Posted

      I didn't really. Something happened each time I tried to post what I had written. It just froze there. So I guess when the signal came strong again, it went through that many times. Goodness! Sorry about the repetition. 
    • Magpie2me
      Magpie2me laura11452

      Posted

      Yes I know what you mean about appetite changes. I find it difficult to make something nutritious when I feel exhaustion in the evening. As long as what you do eat is basically healthy Laura, that is the key. That is why I find making Shepherds Pie or a substantial meat sauce with veggies, or a pot of soup helps because on those evenings where I just want to crash on the couch, I can heat up for myself a quick and easy meal.
    • laura11452
      laura11452 Magpie2me

      Posted

      Don't worry it does freeze when posting at times.. I actually make a large meal and freeze it in individual boxes..For tired days.. I also freeze fresh vegtables as Iam not sure frozen veg you can buy  is as healthy..

      I find there is things I cannot eat anymore as it feel sick or it tastes weird..

    • trisha87499
      trisha87499 Magpie2me

      Posted

      I thought I was seeing things the post came up 3 times, and I dreamt about a huge green drink chasing me down the street lol I think I will leave the bullet for now lol
    • Magpie2me
      Magpie2me laura11452

      Posted

      That is so practical and clever. I have just learned lately as well that good fats are one of the best things FM patients can ingest. Lower carbs but higher good fats. Things like coconut oil and avocados and such. Some FM sufferers have reaped amazing benefits, including a decrease in pain and a better nights sleep. So we are all learning more things as we go.
    • trisha87499
      trisha87499 Magpie2me

      Posted

      I still haven't got my appetite back properly, I've been just making up milky drinks, it seems to help full me up, even though I'm still getting my nutrients. You can't force yourself when your tired, listless and sore.
    • trisha87499
      trisha87499 laura11452

      Posted

      I'm the exact same, it's mainly my taste, I just go off things so quickly now, it's just me, when I'm not feeling too great, I can go full days without eating, I just make sure I drink plenty and have a bit of fruit every now and again, but I really sometimes even have to force it down.
    • Magpie2me
      Magpie2me trisha87499

      Posted

      I was laughing at your huge green drink chasing you!  I rarely force myself to eat. I wait until I feel hungry. Good to have smoothies during those lost appetite times.
    • laura11452
      laura11452 Magpie2me

      Posted

      I have advocados and coconut Alpro..Bet I sleep tonight lol
    • laura11452
      laura11452 trisha87499

      Posted

      lmao Well they should suit your chas and throw a few brussel sprouts in
    • trisha87499
      trisha87499 laura11452

      Posted

      Are you kidding, Brussels sprouts are the devil of vegetables, they give me the creeps, guess so is going to get chased with giant Brussels sprouts tonight? Lol
    • Amanda_Awake
      Amanda_Awake trisha87499

      Posted

      I once dreamt that a whale was throwing easter eggs at me ..What does that mean??...lol
    • Amanda_Awake
      Amanda_Awake trisha87499

      Posted

      no it didnt...lol it sorted of shimmyed out the water head first and the eggs were floating on the sea and it sort of flipped them towards me...i know that will be hard to inmgine!!  lol 

       

    • Amanda_Awake
      Amanda_Awake

      Posted

      I have been thinking about it and it could mean lay off the chocolate or you will be the size of a whale ???  lol

      That is one of the less weird dreams I have had...the others are seriously mad!!..lol

    • trisha87499
      trisha87499 Amanda_Awake

      Posted

      I get completely mad dreams too, that's when I do sleep x wouldn't look too much into it
    • debbie68552
      debbie68552 laura11452

      Posted

      I find if I start drinking water first thing in the morning and keep taking regular drinks throughout the day, I have more energy.  The only downfall is the bathroom is upstairs, and with sore legs and knees, well you know the rest! 
    • Magpie2me
      Magpie2me debbie68552

      Posted

      That is so true about drinking water Debbie. I hardly get thirsty so that is not a good indicator of being dehydrated. My Osteopath always asks me if I am drinking enough water. I have to remind myself and discipline myself to drink regular glasses during the day. We also eliminate toxins better by being well hydrated. It also helps with headaches. 
    • laura11452
      laura11452 debbie68552

      Posted

      Lol I am going to carry a bucket around because of the days when it is never ending.. I am exhausted climbing stairs and paranoid the neighbour hears the constant flushing of the lavatory..Heavens knows what she thinks..Niagara Falls
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