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Personal stories, advice and support from people with M.E./chronic fatigue syndrome and fibromyalgia
  • feeling sleepy

    by fibromum_to_6 on 02 May 2011

    Awoke at 4 am wide awake after just 4 hours sleep, got up and then tried to get back off to sleep again only to be awake again at 6am feeling irritable at everything. Drifted back off to sleep only to be woken by my carer for a strip wash today , I should have cancelled and enjoyed a Pj day really. Managed another nap and then hung out a small basket of laundry onto my airer in the sunny conservatory. felt quite satified at only getting a little bit of help from hubby to get on with such an enjoyable task. Had a lazy day , still feel over tired . Done the shoe hunt and sock hunt so time to have an early night and a movie tucked in bed ..YAWN Tongue Tied

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  • The victim of a high speed crash?

    A famous swimmer on a high board - splash!

    A bored secretary handling petty cash?

    A Mum whose moaning 'bout  nappy rash.


    No! Had my Mum time when tandem feeding.

    How  about cars?..  the pleasure of speeding?

    Begging for mercy on my knees pleading?

    Or is that the  Librarian lost in her  reading?

    The smile on her face,nothing more than misleading!


    An interpreter pondering, translating

    The risk taker, off, tired of blind dating

    The artist within , still painting, creating

    The  woman within, ready and waiting


    So what's in store in my next chapter?

    will I escape my imaginary captor?

    After all  have I not played the actor,

    the great adapter?


    When a childhood of abuse,

    could have turned me into the perfect recluse.

    Destiny leads me to a new awareness

    Away from thoughts of lifes unfairness.


    Time now for a round of applause.

    As I look from within for my own life cause.

    So who do you want me to be now?

    I am  ready to take my final bow.

  • After a brief visit to my GP I have now been referred back to physio for my wry neck aka torticollis. I had never heard of either of these things , but am relieved upon googling that many fibromites suffer from this as part of their condition. At the moment My head is comfy tilted slightly off to my left , I assumed it most be due to the frozen shoulder bouts coupled with the facial myalgia that I have been getting. The pain is caused when I try to look anywhere other than just straight ahead. I found this link which I thought was quite helpful . Will let you know how I get on with physio. fibro hugs to my spoonies. Pain code Amethyst. Morning stiffness sucks!

  • The sun has made a huge difference to me this week, it has poured in through windows, and baked my conservatory. I have sat watching my kids doing hopscotch on the drive and bought some giant chunky pavement chalks along with a bubble blower that has batteries to save me dipping the bubble wand in and out of its pot and blowing every few seconds. The kids totally approved and have dance in the bubbles and the sunlight almost everyday. I get great pleasure from watching my children and helping them try out new things, I explained to them about laughter therapy.

    Did you know that a small child smiles approx 400 times a day to interact with its outside world or that children laugh upto 150 times a day whilst adults are lucky if they laugh 15 times a day !

    We made a pact this week to spend 15 minutes after dinner at the dinner table to try laughter therapy. So I told the kids to find their tummies and place their hands on them and 'Ho Ho Ho' - they could feel it in their tummy. We then played a game where one person makes a fake laugh and looks at the next one , that person exagerates the laugh further and so on until eventually everyone is laughing. They really enjoyed it and were keen to do it daily . Another odd fact is that if you laugh for 15 minutes you actually feel less pain.

    Many people swear by laughter , try watching your favourite funny movie - do you feel better for having had a good laugh?

    Isn't it  a shame that most of us have experienced at some time or another those words like 'act your age!' "Stop laughing" 'It's not that funny' "Don't be silly!" - when it would seem that letting your emotions out has been proved to be beneficial and even pretend laughter can be contagious and ultimately beneficial too.I would say those phrases are as equally damaging as 'Stop crying'"Pull yourself together"'Boys don't cry" 'Your old enough to know better' - They all give you the idea that emotions should be buried and not released and yet how many of us have buried them so deep that our bodies have become the only expression of our emotions?

    When was the last time you played with your food..made a smiley face on your dinner plate or used a toothpick or chopsticks just because it was fun?Or were encouraged to feel your emotions rather than talk about them?

    When is the last time you had the giggles? Or were encouraged to have a good cry and let it all out ?

    I'd love to hear from anyone who has found laughter has improved their lives ..


  • Well the weekend is here again , time seems to be passing ever so quickly whilst the children are off school. I have managed to survive so far charged with coffees during the day , pacing my daytime activities out . Fortunately my 9 & 10 yr old have been away in Paris all week. The teenagers have been drifting in and out but have done an excellent job on doing up my front garden, which I can view from my chair in the kitchen . My 6 yr old has kept me on my toes with baking ( We got one of those mini cupcake makers) - this has proved great fun as all you have to do is have the instant cake mix and drop it in for only 3 minutes , of course I set the egg timer to go beep or else I'd totally forget them. In fact the egg timer has come in handy all week. I set it to 15 minutes and my 6 yr old and I change position , it has become our game for the week. We did 15 minutes of sticking , my hands curled in pain just as the timer went off - Oh I was glad when that bell rang !! We did 15 minutes of her TV channel whilst I put my feet up and cuddled her, then we moved again to do some colouring in and so on. Seems my day has been full of childlike fun and I do feel better for it even if now I lay wide awake as usual ,restless legs annoying me and my right ankle still slightly swollen for no aparent reason . All in all it has been a good week. Paincode Amethyst. Fibrohugs and goodnight to my fellow spoonies ;-)

  • I just came back from an amazing pamper weekend organized by FMS-SAS charity at Bracklesham Bay near Chichester. I did not know what to expect. They had various spokespersons advocating various alternative therapies which had helped them with various fibro ailments. Ranging from laughter therapy ( which I can highly recommend), meditation (which I do regularly anyway) through to herbal suplemants,diet change,magic wands,aura readings,a GP who is also a medium,Kriotherapy (being frozen at Champneys). Various tonics ranging from something called green magic which whilst it looked horrid tasted quite nice, to all sorts of juice/veg cocktails. We had fun with a fibro fillies race night and saw stuffed knitted jockeys on live pigs racing round a track which caused much amusement. We had a Cockney Barrow Boys night and had Pearly kings and Queens and we even celebrated the royal wedding with a fancy evening do. I have come home having laughed and laughed was an amzing atmosphere to be in . I even had a make over whilst I was there . Feeling Lilac ,tucked back into my own bed at last .

  • Most of us take so many pills, we feel like rattling, so the idea of drug free pain relief is very tempting. As I have tried various Tens and TSE units, I thought I would share some pros and cons in case you want to try them.

    Firstly, there is no miracle cure. Not yet, anyway! But if you, like me, get the chance to try a machine for free, then go for it. I was worried it would make my neuropathy worse, but this hasn't happened at all. I have found these pain killing devices to be a great help in living a more normal life. My first Tens device (the loan one from the Pain Clinic) was one with those dials on the top. Whilst they worked well, I have a short curvy body, so was forever turning them up with my breast by mistake!! So I tried various machines with concealed controls for my every day unit.

    Standard Tens units - these vary greatly in price, but I found getting one that plugged in was best, so I wouldn't have to keep charged batteries. If you want to use it round and about, consider buying the batteries with the highest maH value you can get. Tens is very high drain, so the larger the battery capacity the better. You may have to pay a bit more, but its better than running out of juice late at night. The leads make it difficult to do much, but generally you get into a routine of using them at a time when you wouldn't need to do much else, such as you telly watching time. You can also get ones with 8 pads if you look round so can cover lots of places at once.

    Digital Tens units. Some of these offer varying cycles, which means you don't have to choose fast or slow rates, each of which have their own benefits which stack up. Some offer the Han cycle - a varying rate that was found to offer the highest level of general endorphin production. These machines can be faster to gain benefit, but the decent ones are generally more expensive, and don't seem to last as long.

    Mini Tens machines. You can pick these up for as little as £13, and their main advantage is having no wires. This does mean that they only work one small area at a time, and they also have a limited choice of programs. Where these come into their own is having something to stash in your handbag for emergencies when out and about.

    TSE is still very new, and expensive, think £200! However they kill all the pain in one half of your body. This is working very well for me at the moment, and has greatly reduced my need for drugs, but took a long time to find the right set up. The 28 days no quibbles return helped, but wasn't really long enough for me. The unit is very heavy, and even with the highest capacity batteries I could find only lasts a few hours, so I am glad I bought 2 sets! This really does kill so much pain that I have injured myself and not noticed, so care should be taken. The unit is also very heavy, and you cant wear necklaces while using it in case they disrupt the current flow. All in all, these are great devices for Fibromyalgia, but they don't work for everyone, and you need to persevere to find the right device for you. This may not be a cheap journey - as well as buying the machine yourself, you will need to keep it stocked with the electrode gel pads, and maybe the occasional lead replacement too. How have you got on? Or do you have any questions on these?

  • How on earth can anyone get so excited about attending a Hospital Appointment?  I keep asking myself this question.  My long awaited appointment to see the Immunologist about my ME and FM is actually going to happen!  18th April is clearly marked on the Calendar as D-DAY.  Am I pinning too much hope on this appointment?  It has taken my GP's 8 years to finally decide what is wrong with me.  I have been prodded, poked; all pilled out and told I am crazy yet all the time I was suffering from FM and ME.  Although that was a relief to hear it was devastating to know the effects that these illnesses were going to have on my own life and that of my families.  It is so hard. 

    So the question is what is this super duper Consultant going to do for me?  I am hoping that he will give me access to any treatments that are available to people with these illnesses and that perhaps and only just perhaps one of them may work for me?  Am I living in a dream world? Yes probably but I don’t care, as this is my tiny ray of hope that may and only may lead to me feeling just a teeny weenie tincy wincy bit better.  

    The downside is that I lost my much loved and very well paid job.  The large government organisation I worked for failed to understand their own sickness procedures and policies and couldn’t care less about legislation covering disability so had put me through their stringent sickness policy despite being aware of what my illness was.  Now I have a legal battle on my hands to prove that they were WRONG>>>>   Just what I need, more stress. 

    Well I will sign off for now and await my hospital appointment with bated breath!!!





  • Suicidal thought of a goldfish..


    Is this all there is

    to life? swish, swish!

    If I could have one wish...

    I'd see you on your fancy dish!

    if this is all  I accomplish

    my life seems so amateurish

    perhaps if I'd been born a sole

    I'd be aiming for a higher goal

    I see you dangle  fishing pole

    I wonder if this will make me whole?

    I feel as though I'm on parole

    maybe, free,  I'd  lose control

    pop down that famous rabbit hole,

    In my bowl now cast aside

    thought I'd be a pet of pride?

    Recall my  mother as she cried

    a little piece of her had died.

    All I swim is  round and round,

    dizzy spells cause thoughts profound.

    Life's sweet mystery is drowned

    Yet another swim abound.

    Is this all there is

    to life?  swish, swish!

  • Today I was leading a self help group for fybromyalgia , I was up and raring to go. My carer arrived and I realised with panic that I was going to arrive at the meeting 25 minutes late. I got out the door and she asked me if I had my door key before closing the door behind her. I assured her that I did as I glanced down a my handbag and off I set. I had a very enjoyable couple of cups of coffee with a fellow fibromite . No one else turned up. It was only as  I went to look inside my bag for keys that I realised I had not got my keys nor any cash. I had no phone numbers either as they were all indoors. Convinced as i was that I had at least left the house with my keys I set about the reverse journey lookign for them. Eventually it was time to collect my youngest from school so I decided to head there and hoped that at least the back door woudl be open on our return. Of course it wasn't and it was getting colder by the minute. Now it so happens I have one of those really useful little fireburners in my garden so I tried to get a fire going , this proved more tricky than I had imagined as nothing seemed to want to stay alight. by this stage I had been locked out 6 hours and was getting very frustrated , we decided to try the doors on my sons car as he was not home from college , one door was indeed unlocked so we snuggled up in the car waiting for anyone to let us in. My 9 yr old arrived and joined us in our adventure in the car he asked if we had tried the doorbell and I said of course I had but no one was in. So we sat and continued to wait playing daft games in the car as if we were on a magic car drive. Finally my 14 yr old turned up and let us in and within minutes of getting in my 15 yr old returned from his Paris trip shortly followed by my husband. I was relieved that we had managed and was so glad to get in. I came straight upstairs only to find my coat and my keys were there with my mobile phone and diary at the end of my bed GRRRRR! How did I manage to do that to myself ?

    Ah well another day over , pain Mulberry/Amethyst so off to see doctor tomorrow for my frozen shoulder again . Fibrohugs to all

  • Last week I flew with a certain orange airline. At the airport I was taken through in a wheelchair and then transported to the gate on a sort of open top mini bus which rattled my bones and made me sore . The rules on the way out were everyone boards who has pay extra for speedy boarding goes on first (about 80%) then all those assisted (that would be me) next then everyone else.By the time I got on I was sat half way down the plane nowhere near the loo. I was so exhausted by the time we took off I was sound asleep snoring my head off. Interestingly on my return I was collected again in a wheelchair and taken on first and was informed I must sit in the font row which was handy and then the speedy boarders got on and the plane was half empty so barely anyone boarded after that , which I found quite amusing. So in between my two flights what did I get up to?

    Well the spanish weather agreed with my fibro a lot more than uk rain. I still awoke unrested and my body locked and stiff, but I would hobble out to the conservatory to enjoy 26 degrees through the glass as it gently warmed me up. I enjoyed fresh fruit and yoghurt every morning and I rested lots. I found that I could get around in short bursts on my crutch , my general aches and pains subsided as the sun penetrated but my right ankle suffered badly as it became swollen and difficult to walk on . Far more people out there where using electric mobility scooters and I wished I had been able to take mine on some days .The funniest day was when I needed to go to the toilet at a supermarket , they informed me you needed a key for the disabled loo but that is was downstairs. I went outside and looked down the stairs but there was building works going on at the bottom of the stairs so rather than attempt to go all the way down I went back in to verify that was where they meant to send me. They then explained that you had to go down a ramp the other side and that only the disabled loo was in use as work was being done to provide another his/her toilet but was not yet finished. I walked off confidant with my radar key, reached the door but it was not the correct type of key. I went back to the customer service by this time my legs crossed exhausted and explained I could not open the door , she then found their own  key and explained my radar key would not fit the door ( as if I had not figured that much out already) off I went this time depserate and fast running out of time , when I got down there , two more ladies (elderly0 and a small child with  mum were trying to figure out how to get in , they argued that they needed to get in first . This was tricky because how could I explain , I chose not to waste time and unlocked the door allowing them in 2 by 2, eventually one wet pad later I was in there sorting myself out thinking how glad I am that we have more than one public toilet to use in the Uk at a time .

    The week passed quickly and now I am home in time for mothers day which is very nice. Pain code Lilac today ,hope it stays that way .

  • Ive been umming and ahhing about how to start this blog, as I am still on the long road to diagnosis. I am currently seeing an endocrinologist – the most recent in a long line of doctors and specialists I have been referred to over the last 3 years. He has mentioned Post Viral Fatigue as the reason behind my symptoms, but of course I have to go through the rigorous testing to ensure they cannot find anything else before I will get the diagnosis. Still, all that diagnosis will provide me with, will be a label. Another person put on the shelf with no hope of helpful treatment and little chance of recovery.

    I feel invisible. And several times a day I question my own sanity. If I don’t look ill how can I make people understand how I feel? I still manage to hold together a job, a home and a family, yet I do this with so many struggles that I feel at the moment something has to give. Only problem is if I stop work then it’s pretty inevitable that we would lose our home, and then from that, maybe the family. So I am trapped.

    I hardly sleep at night, I wake unrefreshed and tired. My muscles and joints ache. I could deal with all this if I hadn’t lost my cognitive abilities. I can no longer concentrate, cant form words. I feel like I have lost myself. My personality switched from outgoing and witty, to introvert and scared of social situations. I fail to keep up with conversation, often drifting in and out of my own thoughts, stuck in daydreams that I just cannot escape. Information I read just doesn’t penetrate this bubble I seem to be living in. The world just seems to be happening around me, and to join in would be too much effort.

    I struggle to find the right way to describe to people how I feel, and I also struggle with my own issues of being regarded as slow, or stupid. I don’t really want people to know I am ill because they might feel sorry for me, or they might treat me differently. I just want to be how I was before. The more I try to run back to my former self the harder I fall in my illness.

    I have avoided writing my blog up to now as I secretly felt that putting it on paper (even virtual paper) would make it real. And I have been trying to avoid facing up to it.

    I am well and truly grieving for my former self. 

  • My 1st blog

    by Linzi25 on 24 March 2011

    Hiya, I'm Lyndsey, I'm 24 years old, 25 in a few weeks.  When I as 18, I got Glandular Fever, I was very poorly for a long time, I had to quit uni and was signed off work for 3 months. In this time I was only drinking milk as my throat/tonsills where that swollen I could barely swallow, the doctor thinking I just had septic tonsillitus again gave me a strong dose of ammoxycillin,.. only when I had a bad reaction did they realise it was Glandular Fever.  I finally felt "normal" enough to go back to work, in the months that followed i had several bad chest infections and was diagnosed as being Asthmatic.  I also wnet back and forth to the docs with problems with my stomach,.. indegestion, heartburn, reflux, abnormal bowl movements. I got that bad I couldnt eat 1/4 of a sandwich without feeling so incredibly ill.  In this time I'd tried several different prescription medicines for ibs, I found my symptoms worsed after certain foods esp dairy.  Finally after 9 months and loosing 1.5 stones in a week I got reffered to the hospital to see a specialist. I got diagnosed with producing too much stomach acid and therefore being at risk of getting a stomach ulcer, so was put on Ranitidine and was told I was more than likely dariy intolerant so to avoid it but they couldnt do the test because they no longer did it at the hospital.  Over the next few years my asthma has worsened, I have had many chest infections, broken my ribs twice through coughing so much.  I've had my asthma medication changed many times to try and bring it under control. it works for a short time, then I get chest infection after chest infection and its no longer controlled.  The Ranitidine seems to be controlling my excess stomach acid, i now take half the dose I should do.  But I never had any energy since having had Glandular Fever and always felt tired, I just wanted to sleep, as the years went by I found it harder and harder to keep my full time job and all my hobbies,.. so the hobbies had to go :(  


    About a year ago now, after talking to a good friend who has M.E it was recomended to me that I go privately to see her specialist who trained under Dr.Perrin. I was diagnosed as having CFS/M.E, the toxins in the fluid around my spine and brain refluxes back and builds up around my brain, which causes brain fog, forgetfulness, I muddle my words and letters up a lot (its taken me a while to write this). I get pain in my head, neck and top of my back. The other side of it is my Immune system doesn't work, it fights things it shouldnt, but doesnt fight what it should, meaning I have lots of allergies, to foods, substances etc.  I'm getting chest infections more and more often, my asthma is becoming increasingly difficult to control, theres more and more foods I don't seem to be able to eat for one reason or another.  


    The treatment I recieve is great for the drainage of the toxins, I feel better for a couple of days after i've been,  I can move my neck more freely and I don't have the pain.  Six weeks ago now, I went to see a Nutritionist and I've been put on a detox diet, no wheat, dairy, soya or sugar as my body cant process them.  Theres also lots of other things I can't eat for one reason or another so its been very hard going the first couple of weeks.  I'm also taking lots of different supplements which my body is missing to try and repair my immune system.  Fingers crossed!!

    Just before this last xmas I had a chest infection for which I got antibiotics, It seemed to clear up but returned with avengance on xmas morning.  I spent several hours on xmas day in hospital, my asthma was bad, but I got told I was fine, take my inhalors I had no infection.  A couple of days later still raging temperature, and a peakflow of 1/4 of my normal and wheezing so bad I oculdnt lie down or sleep,.. I got told by the doctor it wasn't that bad he had seen worse, and sent me home with extra strong antibiotics (only about 3 diff types i can have now) They started to work but I had a bad reaction to them.  I went back and forth to the docs, a few weeks later I got some more antibiotics and it seemed to go. Two weeks to the day after finishing my 3rd lot of antibiotics it came back again.  The doctor says my lungs are clear it's my upper airways, I sound like a smoker (never have smoked ever) when I cough.  When I start coughing I start wheezing and have an asthma attack.  Last week I had a chest xray, I get the results at my doctors next week.  I'm hopeing they will sort something out because I can't cope feeling like I have an elephant sat on my chest and not being able to do anything without needing my inhalors.  

    I manage to hold down a full time job but I don't do a lot else any more, I'm wiped out when I finish work and I sleep most of my weekends away.  If my parents don't wake me up I easily sleep to dinner time.  I'm only still awake now because my chest is really bad and I can't sleep.    I used to love going to Jujitsu but it got to the point where I was present in body but not in mind, nothing went in.  

    It is really hard living with CFS/M.E it affects every aspest of my life but there is hope out there in the private sector.  When I mention it to my doctors I get asked what it is which I dont think is very good.  People seem to think its just being tired but its not.  I'm nearly 25 and my body id failing me, my lymphatic nervous system is faulty, my immune system doesn't work, I'm allergic to loads of foods etc and my asthma is determind to be uncontrolled.  The tiredness is a side affect of my illness.  I'm just glad there is hope in the private sector, the specialist I see is excellent, the nutritionist helps, now I just need allergy tests to find exactly what I should be avoiding.


    I think thats more than enough for my first blog.  If you have read it beginning to end thank you, I find it helps to get things off my chest so to speak.  :)

  • I know the old saying time flies when you are having fun , but actually time really has flown by this week with no fun in it at all . This week I had mixed feelings as I was disharged from STR for making such good progress. I was told I should be very proud of myself for what I have achieved particularly in the last year. I am not ver good at accepting compliments. I sat there with my left arm hanging limp by my side, migraine being held back by latest dose of pills, hair unwashed and unmade up as I was in too much pain to put a face on . It was hard to think of the good days, the days when not only am I up but out the door on the buses with my new buspass. I go out twice a week these days , one to enjoy a sort of craft group followed by singing which makes me smile. Then again later in the week to try out my drama skills, of course years ago I would have been the one moving sets ,painting props , my body won't let me do that , but it took for my STR worker to convince me to go back and try the things I used to love before I became ill. At first it was hard for me to even rest up enough to be up on time , this has become easier with practise and determination. Sadly though my body still caves in now and then and I miss out on the fun. In one respect I see this discharge as a marker of triumph , but then there is that little bit that wants more. Like a spoilt child I feel myself asking is this as good as it gets? Why can't I be cured ? Where is my magic fairy who will take this pain all away, my time is up on the revolving door system , I should be chuffed that I have come so far why do I have nagging thoughts of just not being as fit as I had hoped to be ..?Purple pain code Amethyst Tongue Tied

  • Well I have not been on the laptop much as my daft shoulder on my left side has gone into spasm. The pain is radiating from my neck, I can't put my chin on my chest nor turn my head to look to the left nor to the right . My carer had to do most of my personal care as my left arm just refused to cooperate and the pain was excrutiating as I lifted it just to put on a blouse and t shirt. Does any one else get these muscle spasms locking up just 1/4 of their body at a time? Even my left hand does not feel as if it is my own .. I would love to know what anyone else does to cope when this happens ..Sad


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