Having a really hard time, advice please

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So I need advice. I was diagnosed last January with ME/CFS, and I'm only 22. I had two months off in July due to a relapse and I (foolishly) went back 6 weeks ago. I'm a nurse and I only work 8 hours a week, yet somehow I feel like my symptoms are getting worse. 

I have never felt pain like it at the moment, spasms in my back and not being able to sit up when lying flat because my ribs and abdominal muscles ache. Having to hold my head up because my head feels like a bowling ball and the worst headaches imaginable. Is anyone else experiencing pain like this?

I worry that I'm putting my work before my health but I'm concerned that if I got off sick again, it'll be for even longer and I risk losing my job.

Any advice please, anything at all, I would really appreciate it.

Lauren x

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  • Posted

    Hi Lauren  , my son is 23 and developed cfs following a serious rtc with a drunk driver 3 yrs ago last yr he had a complete melt down and took 4 mths off work as a registered general nurse of nearly. 30yrs and vice chair of our local support group for fibromyalgia/ cfs/ me i pressured our gp and he referred him to the cfs service in seacroft Leeds he was then assessed by a consultant psychiatrist and was started on venlafaxine 75 mg b .d  which is a serotonin and norphrinephrine re uptake inhibitor he then commenced 6 sessions of private CBT with EDMR therapy his psychological has improved vastly within 3 mths he can now manage his pain and fatigue has a more positive outlook on life and has been back at work on 39hrs since 2.1.14 with no days off sick. He still has fatigue physical and mental, pain, memory problems. With all the treatment he had learnt to understand his own mind and what triggers his flares. Although theses conditions are definatley physical the psychological state needs to be able to cope with the symptoms and by using every tool in the box it assists day to day living. I have had fm since 2001 I do understand how you feel. 
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  • Posted

    Hi Lauren, sorry to hear how badly you are suffering at the moment. I understand exactly how you feel as I am in the process of giving up my job after 6 months off due to sickness. I have cfs/me but also suffer with cervical and lumber degenerative disc disease and fibromyalgia. I wonder if you have any trapped nerves in your spine? It may be worth seeing a rheumatologist who can the do an MRI scan for you. How long have you been doing your job? Your work should be understanding with your condition and you must listen to your body and not push yourself too far. I hope you can get the help you need.

    Love, Paula x

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  • Posted


    You do need to put your health before your work. Your body is telling you to dial it way back and rest. The pain you're having often comes with this illness--including the headaches. I didn't listen to my body and I'm really paying the price. My ME/CFS got much worse, and I got new symptoms I'd never had before. A friend tried to warn me, and I didn't listen. Then I was forced to listen because my body simply would not cooperate with my desire to do more.

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  • Posted

    Hi Lauren, Sorry to hear you ME/CFS is getting on top of you.  I have had ME and Fibromyalgia for 22 yrs, since I was 14.  I too cannot sit upright in bed - I think that is due to the Fibro rather than the ME.  I can also get some horendous headaches.  With the headaches I have to take a strong headache painkiller within half an hour of it starting or I end up in bed feeling sick.  You have said you do 8 hrs a week but not mentioned if that is all in one shift?  8 hrs intensive physical work like yours is going to keep knocking you back. They call it Boom & Bust (I'm very good at it).  If you are doing a straight 8 hrs I suggest maximum 2no. 4 hr shifts.  Even that will keep knocking you back but it would be alot better than all at once.  If you could split it into smaller chunks all the better!

    My experience shows me that it won't go away if you ignore it, it will just get worse (I'm now questioning my heart rate).  Don't keep pushing it, if you can work out a way round it. Good luck xx

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