Living with Chronic Fatigue Syndrome: February 2014 Update

Thank-you for watching!
I apologize for the first few minutes of footage being out of focus not sure what happened but the rest of the video is fine 🙂

Previous CFS videos:
This is a update on my health as I struggle living with CFS,
I believe I have a mild case compared to other people but it still impacts my life in a huge way. I wanted to share my story to connect with other CFS sufferers. Nobody seems to know that much about CFS even though many people have it. Hopefully through these videos people who don’t suffer can get a better understanding of what we Chronic Illness sufferer’s go through.

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Disclaimer:
: I am no way a medical expert or professional on the subject at all. I am only sharing me experience and my symptoms in a attempt to help people, relate to people who have it and to explain to friends and family what i am going through. I am no way moping or complaining about my life or saying i am any worse off than anyone else. Everyone has something in there life and this is mine. 🙂 Also wearing make-up helps with the under eye bags.

24 Replies to “Living with Chronic Fatigue Syndrome: February 2014 Update”

  1. how did you first get diagnosed? like what tests did they do in order to properly diagnose you? honestly you have a lot of the symptoms i have on a daily basis but i have blood sugar and breathing issues so i'm not sure if they're all associated with that

  2. Hey 🙂 Aching joints yes! Knees especially! Elbows hips neck ankles wrists etc etc. Knees are so painful on the insides to the point I cant walk and the other day it hurt in my thigh also. I put on knee supports and the pain eased, a LOT!! I get days when I cant even support my head. I have carers in twice a day to help. Ive gone 4 days without a shower or washing, so far!!! Ive been to a Rhumatologist a neurologist been to the pain clinic had mri's blood tests endoscopy and colonoscopy the list goes on. Ive had a CFS specialist come to MY HOME (I live on the Isle of Wight UK they came from London) all the treatment offered is CBT. Apparently that helps A LOT of people. Hmm not so sure, hey ho go with the flo!! Ive been on goodness knows what drugs but right now Fentanyl 50mgh patches Gabepentine and amatryptaline. Also gaviscon and an antacid as I have reflux and my oesophogus is damaged. I have oramorph and diazepam for top up pain relief. Ive gone from dress size 10 to a 16-18. 9 1/2 stone to pretty much 12 stone. The drugs have done that plus no exercise. I have IBS and look like im pregnant. Im miserable but am trying to be happy. Im a mum to a 16 yr old and 4 yr old and life is beyond hard. Before all this I was holding down 3 jobs, going to college ,studying another course and keeping house and being mum and having a social life all at the same time. Now I have no friends and my life is the sofa. At the moment im staying strong, life sucks big time but trying to get through. I cant say how I'll feel in another years time, its been 2 years since diagnosis.

  3. The struggle is REAL!
    I live in the US and our gov't has a sick sense of humor to move forward the clocks an hour this week to save electricity. That doesn't help people who can barely function on the little amount of sleep they were getting. I NEED that extra hour!
    Anyway… A lot of the symptoms except the heart thing I have also.
    I was diagnosed with 2ndary fibromyalgia and a bunch of other stuff. (2ndary meaning it's more than one thing). I have found cutting out gluten and dairy REALLY helps! And corn too. But I don't think NZ has the GMO crops like the US. I eat as much organic as possible. This summer i ordered a GF pizza and they messed up my order, I ate it not knowing…it made me sick for 3 months and I was in so much pain and exhaustion that I lost my job cuz it. I was wondering if I could go back to work too. Thankfully a great place hired me and I was up front with my health issues. (Something I was always scared to tell employers). Well tonight my "trusted" restaurant (I have about 3 I trust) messed up my order and I ate the fried around my wrapped burger and didn't see till later it was a gluten bun. Just the close proximity of it is making me sick.
    This summer my legs were in so much pain it was really hard to wear pants or any clothes at all (they are kinda needful!) finally I went to a naturopath and he was a lifesaver! He put me on low dose naltrexone to help with the pain in my legs (associated with fibromyalgia) and it is sooo much better! But I am still struggling to stay awake during the day. 🙁 I need to go back and see him but I have no insurance and he costs a lot…
    Anyway. I highly recommend seeing a naturopath. Regular docs are a waste of time! Even specialists are not all that special. They treat symptoms and not the cause. A naturopath goes after the cause. Your immune system is in ur gut. Take care Of it and it will take care of u. 😉
    Thx for sharing this vid!
    Any helpful tips of how to make it thru the day?? Other than a pot of coffee…, 

  4. Yes I understand being too tired to cook! That's usually when someone likes to gluten me…when I'm too tired and I just pick something up… 🙁
    I have a blog where I have posted GF / DF recipes I have tried and liked. http://Www.jeni315.wordpress.com
    I haven't written a new post in a few months though cuz I started my new job and have had no time. But theres a good archive of QUICK easy recipes. 😉 

  5. Hey Laura! I know how you feel with body pain. I was helping out in another function at work where I had to stand most of the day. Big mistake ouch! The hardest thing is pacing yourself when you feel good. I'm getting much better at it. Even if u feel good and feel you can do tons on that day stop while you're still feeling good even tho you want to keep going. The price won't be so high the next day 🙂 sending you tons of love and light Xo

  6. haha I love your video, always great to see there's others out there like me! I have CFS/ME and yep I'm living the dream ;)

  7. Hi,I am having trouble with taking pain medications I seem to have sensitivity everything When I take half doses of Tylenol with codeine my heart flutters or just feels uncomfortable.What do you take for pain and do you have drug sensitivity?

  8. wow that's brave of you to make a video on this, Laura! Looks like you are providing support to a lot of people 

  9. I have been suffering with CFS for 3 and a half years now. I am in constant discomfort due to joint pains and bad headaches. Always feels like I have an energy bar and it is entirely left to chance how full that bar will be when I wake up, and how long my energy will last throughout the day. If I use up that energy bar, I won't be able to recharge for days… sometimes even weeks. I think the mental drain is just as bad as well… Brain fog and lacking concentration even with the things I love doing. I hate it.
    It's kind of relieving hearing about other people's experiences just as much as it is sad. I wish no one had to go through this.
    So yeah, thanks for posting!

  10. Hello, wow I'm so glad I found your channel 😄 I was diagnosed with CFS towards the end of summer, after spending six weeks unable to walk and constantly sleeping ☺before my doctor diagnosed me, she thought I had fibromylagia however my specialist thought she'd check for cancer in my knees!😱 thankfully I don't and I was diagnosed with the CFS. I'm the same as you with constant joint pains I can hardly ever walk and it hurts like hell. When I was younger I used to have severe stomach problems which nearly led to me being in hospital! Now though it's a constant battle to get up and go to school even though I normally just go In for two lessons. I don't know if I should be happy about that or what?! I don't know if I'm the only one with CFS who has trouble breathing at times and it feels like their chest is swollen? Its probably just me.

    Any way I'm so glad I found you channel because instead of crying and getting upset and angry the whole time I try to be happy and positive and I think I make a channel… any way I have to say I think your one of my biggest inspirations xx

    P.s I'm fourteen and on top of the world…well kind of I'm from England ;)

  11. Your symptoms with your heart and pains sounds  familiar,  Iwas diagnosed with pots .  I am gluten free and also have issures with dairly

  12. hii i can really relate to you 🙂 i was diagnosed with cfs 2 years ago and ive been getting joint and body pains and not being able to do anything and i have a horse and whenever i ride i have to sleep for the whole week:( hope you will be getting more good days soon:)

  13. How are you getting on lately? I've just been finally diagnosed too 🙁 I totally agree with what you say about the good and bad days ….hope today is a good day xo

  14. Just found your channel- I am excited to watch the rest of your videos.  It makes me feel good to know there are others like me that have this and are feeling just the same.  All the things you mentioned on this video I have or experience.  Yes, trying to stay happy is a choice that we have to make every day.  

    I have had this CF for years- I think it hit me at 6- I m 42 now.  My husband is my best friend and an angel.  He gets it, I don't know how he does so well getting it.  My life would be hell without him.  My friends don't get it and the last one is fixing to buzz off because she doesn't understand why I wont walk laps back and forth across the overly full pool in the Texas sun.  I'm done with the guilt so I could care less.  We just don't look as bad as we feel- I guess that is a very good thing lol. Just buck up and git r done doesn't work.  All the best to you and others with this disease.

  15. I was also diagnosed with Cfs. It is such a weird illness. I have those heart issues too. I had to totally re- evaluate my life. I'm considering announcing this on youtube. I was feeling really well and thought maybe it went away. Do you find your symptoms change and come and go. I do get joint pain. I was also diagnosed with Fibromyalgia which can go along with CFS/ME. That is so funny you said that about the good days it does play mind games with you. I was diagnosed at age 27. Started having symptoms around age 22.

  16. Hi Laura Jane
    I have CFS too, and actually a large part of my symptoms relate to body / muscle / joint pain. I was therefore diagnosed with Fibromyalgia. This tends to be quite common in people who also suffer from CFS so you are not alone! I have been having to take opiate painkillers for the last year – but I still get pain whilst on them – because my body is used to them now. I'm going to try out Low Dose naltrexone (LDN) which has been shown to be very effective in helping people with chronic pain. I've just joined youtube so I don't have any videos up yet but I will make sure I add one about how the LND goes and effects my pain levels 🙂
    Here is a link to more info on LND: http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
    Hope you had a lovely christmas 🙂
    Panda x

  17. I have bipolar, CFS, anxiety, depression, thyroid problems, hormone problems, fibromyalgia, personality disorder, PTSD, and I STILL WORK!!!!! I STRUGGLE. I CRY. I FEEL LIKE DEATH BUT I DO IT!

  18. Hey hun!
    I just recently came across Chronic Fatigue Syndrome and wondered what it was? i googled it and found so many of the symptoms are what i have. I have always been a tired person since being a teenager never have i ever been a morning person and i can sleep for so long and still feel tired and have naps during the day. It's not like omg i can't keep my eyes open, it's more of the feeling i can't cope right now i am just exhausted! I also have digestive issues, low blood pressure, muscle aches, bladder problems etc, etc. My fatigue has gotten a lot worse since starting a new anti depresent. I wonder if i have this if not sereve then even maybe midly? I'll keep watching your videos and put it to my doctor next week when i see her.
    Thank you for your videos. :)

  19. Hi Laura,

    I was diagnosed with CFS in the christmas holidays last year after about 9 months of no results. I also have low blood pressure, resulting in severe dizziness and faintness and also heart palpitations. I'm constantly researching about my condition on the internet and I've noticed that not many people have similar symptoms to me – of course I know it differs a lot depending on the person but it's such a relief to have found your video and know that someone is having very similar problems as me. I also can relate to the splashing out on the good day and then regretting it a day later cycle. Just yesterday I was on my feet with 3 of my friends for 5 hours straight which is a huge effort for me as I can usually only manage 4-5 at school including over an hour sitting down for lunch and morning tea). And now I think I've hit the regretting stage today as my dizziness/faintness and other synptoms have hit hard again. Anyway – I just wanted to thank you for posting this video and I hope your health has been and is still improving!!

    Love, Joy xx

  20. Thankyou for making these videos and getting the word out there about CFS! As a sufferer it's so reassuring to see others talking about it! Hope you're well, much love! X

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