Need Advice for ME/CFS please!

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Hi,

I am 22 years old and was diagnosed in January 2013 with ME/CFS. I have recently started a job this year as a staff nurse and have just had to take 2 months off due to a relapse of my ME. I am concerned about my job stability and recovering from this current lapse. I have returned to work on reduced hours but feel anxious at the prospect of returning full-time. Can anyone who has been through a similar experience please share any ideas about how I can approach this?

Also, I am suffering from severe fibromyalgic pain. I am on Gabapentic 300mg TDS and I am on strong painkillers whenever I can. Has anyone else found anything that has helped them with this symptom? To be honest, I have been pretty much in the dark about this condition since being diagnosed - I do not have a wide knowledge on the condition and would really appreciate people's help, as I am yet to meet someone with ME! 

Even if you want to share your story, I would greatly appreciate it - hearing other people's journeys may shed some light on this for me.

Thanks so much and take care,

Lauren biggrin

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5 Replies

  • Posted

    Lauren:

    I developed ME/CFS several years ago, when I came down with the flu, which became the flu that never went away. When I first became ill, when I started feeling better, I went back to work, because I was always a very conscientious worker. Big mistake! I became so ill I thought I was going to die. So my biggest advice to you: don't push it! You've already had one relapse. That's your body saying "Danger, danger!" So for the sake of your long-term health, rest. Only go back to work full time when you're good and ready and feel healthy. As for learning more about ME/CFS, we're in the wonderful age of the Internet. Do a Google search.

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  • Posted

    Hi Lauren,

    I'm sorry to hear about your troubles.

    I have been on a whole bunch of different pills over the last few years.

    What I am on now is Diclofenac and Lyrica.  Lyrica is similar to gabapentin, which I used to take.  Diclofenac is an anti inflammatory used mainly for gout.  I went on it because I was having stomach problems from being on Indomethicin.

    They took me off Diclofenac and put me on Celebrex, but that was a disaster. Celebrex did nothing for me, my pain skyrocketed.  I have nerve pain (peripheral neuoropathy) as well as fibromyalgia

    Tell your doctors that you want to try out different combinations until you find one that works for you.  Try to stay away from the narcotics because they are a lot of trouble in the long run. 

    Good luck,

    Sunny

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  • Posted

    Hi Lauren

    I have ME & Fibromyalgia & Functional Movement Disorder.  The internet is a great way to find out more about your condition.

    I wear a magnetic back support which I bought through ebay to help with the standing.  You might have to consider reducing you job to part-time rather than full-time and then times when you can't work at all.  It's part of PACING. Oh, I love that wordlol-not! I'm no good at pacing but I do understand the advantages of being able to master it - I'm just rubbish at it! There might be a Fibromyalgia group that meets near you? I have one in Norwich. The internet will tell you if there is one.

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  • Posted

    Hi Lauren,

    My name's Jen, I've had ME for a number of years now. I'm so sorry to hear you've got it too, and with pain too :-( It is very overwhelming to try and get your head around a new diagnosis and there's so much on the internet (and not all of it good!) I'd really recommend joining The ME Chat Room on Facebook. Not only will it mean you'll have lots of personal experience to draw on, but they also have lots of files you can read on different aspects of the illness and the admin are very knowledgeable and helpful. I wish I'd known about it when I was newly diagnosed! I'd also be happy to be friends on Facebook if you wanted to chat more in depth or privately. 

    Other websites I'd recommend in terms of the quality and accuracy of info are the hummingbird foundation www.hfme.org - lots of info, very accurate but lots to get through!  Invest in ME www.investinme.org - a uk charity raising money for research, these guys are fab! Their main focus is on research rather than strictly providing info to patients as such but the International Consensus Criteria for diagnosing ME is available free from them. I'm not medical but was able to read it and find it helpful and as you're medical it should be a breeze. I should say that these aren't the criteria used in the UK so you may not be able to get the treatments they recommend but they are the best ones as are based on clinical and empirical research and put together by researchers and doctors in the field.

    There are other websites that are helpful but I'd have to rummage through my brain and internet bookmarks to find them - am happy to and will, but the ones I've mentioned are a great start.

    In terms of some of your practical questions:

    I'm taking Gabapentin too - I take 1000mg over the day (300, 300 and 400), which I have found useful. It hasn't got rid of my pain entirely but it's now mich for manageable. I did start on a much lower dose and had to go back a few times to get it gradually increased. My gp implied that there were many other options available if this didn't work and i am considering going back as pain is still problematic

    I would say that rest is the most important thing for you right now. Prognosis is best for people who are diagnosed quickly, rest lots in the early stages and get accurate and helpful information. Have you met with occupational health of talk about your situation? They probably won't know much about ME so it'd be worth getting yourself some good info before you go. Can you reduce your hours? If you get into a cycle of pushing and relapsing it'll be bad for you and more difficult for them as they'll have to cover you quickly rather than being able to plan shift cover in advance. I do appreciate though that it's not possible for everyone to work less.

    In general my advice is, it's best for you now to do less rather than push yourself - a rough guideline is to do 80% of what you can manage on your worst day, every day. The idea being you don't push too hard, crash and set yourself back. Over time, you should hopefully be able to gradually do more without crashing. It is extremely frustrating and no mean feat to figure out what your limits are and to keep up as they shift and change, but it does pay dividends in the long run. 

    I don't want to bombard you too much but am happy to tall more. If we can find each other on Facebook that's easy to chat and do look up that Facebook group, it's great.

    Take care of yourself! You're still you, and  life is still good! XX Jen

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    • Posted

      Sugar - 80% of what I can do on a bad day eek no wonder I keep crashing!! I don't stand i chance of ever not crashing.  Bad day equals getting finally dressed by 11am (others making me breakfast and sorting everything for the kids) Eating half my breakfast cos too tired to eat it all. Making it downstairs once dressed to flop on the sofa. Eat small lunch someone else has made for me. Sit on the sofa again (if quiet or upstairs on the bed. Sleep for an hour. If I'm lucky sit at the table with the family for dinner (which others prepared). Can only last through my food then onto the sofa whilst others finish. They then join me in the lounge to eat desert cos I can physically be at the table through the pain.  I then crawl literally up the stairs. drag myself onto the bed. Undressed by hubby cos can't manage it myself.  Then asleep before the kids finish reading their story at 7pm.  Therefore if I'm to do 80% of that per day, every day I'll achieve; dress by 10am.  Maybe I can move into the garden to sit? 40min sleep and undress myself probably still asleep by 7am.  Yep - I'm doomed to crashing everyday! Well, at least I can expect to crash now instead of it sometimes surprising mecheesygrin x Here's to the life of an ME sufferer who is I would rate myself moderate to severe? Please can the medical people find a cure cryplease.

      Sorry - just a moment of quiet ranting and realisation then I'm possibly going to be stuck in this rut forever. rolleyes

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