CFS/ME advice needed please :)

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After suffering with migraines follwed on by viral infections for years I was finally diagnosed with CFS/ME last week.  I was given no advice from the doctor other than to come back next week after some blood tests

I was such an active person; I have two children, work full time and go to the gym at least 4 times a week as well as studying at college to become a nurse.  I have had to give all of that up (except my children) and have been signed off sick as some weeks i find it exhusting just doing the school run.  My arms ache terribly just putting my little girls hair in a ponytail, I've lost so much weight and feel so weak, I can't stop sleeping and my memory is now terrible as well as my emotons being all over the place. 

I started yoga last week and am trying meditation in the hope they may help.

It would be great to hear from anyone else going thrugh the same thing and any adice would be much appreciated.  Should I just push through the aches and hope they'll go away or will I make myself worse?  Should I take painkillers every day??     I have so many questions that need answering so any advice would be great!

Thank you kindly in advance  xx

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  • Posted

    Hi Emily,

    Sorry to hear you're having such a tough time. Believe me when I say it can / does get easier in time you have to be patient though and very kind to yourself. I've been coping with the same as you for the last 2 years after having to go private to get answers the doctors failed to pick up. My advice to you is the following (and this has really helped me)

    1. Listen to your body, only do what you can, if you push yourself you risk more symptoms creeping in and making yourself worse.if you need to sleep then sleep.

    2. Get a good selection of vitamins in your body, these will help eleminate a lot of the symptoms you're having and give you some energy. The following were recommended to me by a Nutrionist. I have the brands I'm on if you want to know (I couldn't function without these!)

    Vitamin D

    B complex

    Fish oils

    Magnesium

    Selenium / vitamin C

    3. Eat a clean diet. Temporarily cut down on alcohol. Reduce / cut out sugar (this includes tropical fruit / and oranges in excess as they are loaded which fructose and cause sugar spikes) and carbs and replace with berries and complex carbs (brown rice, sweet potato / squash etc) also up your protein intake. Eat more frequently and smaller meals it'll really help you and snack of nuts and seed when you feel you need a boost. Try and cut caffeine out - it's really bad for people with CFS.

    4. Exercise you've chosen a good one. Avoid any cardio it'll drain on what little reserves you have.

    5. Keep a diary so you can see how far you've come, you'll get bad days and looking back you can see what your triggers where and five yourself a boost when you're feeling low.

    6. I would also see if you can get some therapy / CBT - it'll help you stay positive and manage you're symptoms.

    Hope the information helps!

    Wishing you all the best.

    Haylee xx

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  • Posted

    Hi Emily.

    Rest as much as you can and do not push yourself it's the worst thing you can do in  this position. The problems wont go away by fighting it but will only get worse. Sorry to hear you've had to give everything up I know how that feels. I had to give up my course when I got ill with CFS and was so disappointed. I thought I would be able to go back again after a short break but actually never did. I have continued to work (part-time) but do struggle and get sick and have to take time off. Take pain killers if you really need to but I find it better not to. They can become addictive and lose their effectiveness. I don't think they are good for your stomach long term, and even short term my stomach doesn't like them much.

    Many people do rave about yoga and meditation but from my own personal experiences I would definately never get involved in anything like that again. Not wanting to upset anyone on here but my own dallience many years ago turned out to be a very bad move. Deceptive and dangerous. Lets say it did not deliver the goods. Martial arts and yogas both have their roots in similar ancient occult practices as do many forms of meditation. Some people find this exciting or exotic, or not relevent, but many do not even know this or the implications it may have. If for you this has no relevence and you want to do it that's entirely your decision but be aware that ANY form of exercise or over-exertion may have an impact on your over-all energy levels. Best to start at say 3 minutes a day, or whatever you think you could tollerate daily without it causing your symptoms to worsen. Then slowly, slowly increase trying to maintain your base-line. If you start to deteriate, go back and start again until you can increase without causing a backslide. This is the advice my OT gave me. I freely admit I am rubbish at following this advice and am always trying to do too much when my energy increases. It's very hard when you are used to doing so much before and just want to get on with your life. My sympathies there.

    I'm sure looking after your family is quite enough already, so be gentle on yourself and rest as much as you can.

    Hope things pick up soon. O

     

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  • Posted

    So sorry you're suffering with this terrible illness. My biggest bit of advice to you: don't try to push through anything! You can end up making yourself a lot worse, which is what happened to me. Pushing through problems can work for so many other situations, which is why many of us try this with ME/CFS, especially in the early stages of the illness when we don't know better. The best chance you have of getting better is through rest and pacing yourself. There are no miracle cures for ME/CFs, no pills, no diets that will magically make you better. So you want to give your body the best chance to heal itself. I've been practicing meditation for the past year, and have found it extremely helpful as a coping mechanism and to help reduce stress. Stress, by the way, is your enemy, and can worsen this condition. People can recover from ME/CFS, even without doing anything.
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  • Posted

     Hi Emily,

    Lots of great advice already given on here. These 2 tips I wish I had known 2 years ago when I was initially diagnosed which hopefuly will help you:

    1. Dont rely on GPs at all to help - its like getting blood form a stone and can add more stress to your situation (unless miraculously you have a great GP who knows all about M.E.).You will find out more from M.E. websites and facebook support groups where you and others can share symptoms, worries and any research/new products/therapies found which have helped.

    2. Ignore the naysayers - There will be folk who may not believe you're ill (You dont loook sick etc). You are! Limit time spent with these folk as much as possible. You may find some friends fall away- you will in time however meet new ones who understand your condition and how it affects you.

    Its a tough call, but you can do it. Lots of people with M.E.on here and other forums, always happy to help xxxx.

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  • Posted

    Dear Emily,

    I'm so sorry to hear about everything you are going through.  Also sorry that despite the diagnosis you don't seem to be getting the support from your GP that you deserve.  If my experience is anything to go by - and it seems to be backed up by many others - anyone getting this diagnosis has to rely on themselves and what information they can get themselves.  This sort of forum is probably a good place to start.  There are places you can get support but sadly it seems to be up to us to find it instead of having it offered to us.  For example I recently found the Thistle Foundation which offers mindfulness courses and life management courses - great if you are fit enought to attend!  My advice is not, absolutely not to fight through the pain.  It's taken me a very long time to understand the wisdom of this because when I first got this illness absolutely no one understsood it and so I felt I just had to fight against it all the time.  In my experience you need to listen well to your body.  If it's in pain then it's telling you something and you need to rest.  Giving yourself permission to do this, and managing to get others around you to understand that you need their help to let you is, I believe something which will help you recover much more quickly than if you do try to ignore the symptoms.  It's well known now that recovery is much more likely if you can halt the illness in its tracks early and I think that means by resting and letting your body be your guide.  As for the painkillers I have found that rest has been the most effective thing though if pain is getting you down I don't think you should avoid taking what you need to help you cope.  Having had very severe pain with trigeminal neuralgia for several years I have also found out that hitting pain quickly is sometimes better than letting it get a hold of you.  I really hope that you'll find all the information and support you need.  My basic advice to you is ask for help and expect to get it.  Best of luck,

    Mo xx

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  • Posted

    Thank you all for your posts, it really means a lot 😊 Over the weekend I found things really hard, Sunday was the hardest, I felt like I really couldn't carry on and didn't want to be here anymore 😭 On Monday after a good cry (again) I decided to change my outlook and basically deal with it!! I am determined to get better and not let this horrible illness consume my life!! I have been doing yoga and meditation whenever I can. At first I found it hard as I felt like if lost all ability to use my muscles but it's slowly getting easier 😊 I've had two really good days of not feeling achy or fatigued and I'm preying this good feeling lasts but I know another episode will come along its just when!! Haha

    I hope you are all doing well and thank you again for the love and support xx

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