Medicine and Chronic fatigue syndrome

Posted , 6 users are following.

I have cfs/ME and I have tried multiple medications for it e.g. Naproxen, pregabalin and codeine aswell as over the counter tablets like paracetamol. I am now on oramorph 5mg 4 times a day but I am in immense pain. A&e sent me home as there wasn't anything they could do, I went to my doctors and have been given gabapentin but that can take 2 weeks or so to work. Has anybody had any luck getting any help when you can't physically cope with the pain anymore?

0 likes, 12 replies

12 Replies

  • Posted

    I also forgot to mention my headaches, neck pain and lower back pain is what is causing me the most distress at the moment. Hoping someone has some advice.
  • Posted

    Very touching prog on tonight BBC 1 7.30PM

    how jodi bickley coped with ME

    NOT about a cure, but worth watching,

    most of us cope with the symtons you have by complete rest,

    headache's, shoulders, lower back, a good chiropractic clinic

    can relieve 25% of pain, visit at least once a month (around £35)

    migrane type pain massage yourself

    cheeks, back neck any area with muscle ,

    any relief is better than trying medication,

    which is yet to prove of any value,

    • Posted

      Thank you for the advice and I'll definitely be watching that programme. I have tried complete rest I don't really leave the house and I have a chiropractor I have saw but unfortunately I really struggle getting there. I did buy a massage machine that the chiropractor used on me but at the moment I don't think I could handle the pressure on my skin.

      Thank you for the reply and advice

    • Posted

      Hi Emily

      I'm sooo sorry to hear  how bad you feel. we've all been there at some time or other, so can totally empathise with you.

      i'm wondering if 'Tramadol' would help you at all.  i haven't tried it myself, but know ppl. who it has helped. unfortunately it's got side effects & is apparently addictive.  the other option is one og the nerve pain Meds. i.e. 'Amitriptyline' or 'Nortriptyline'.  the latter does wonders for me. alternatively, any possibility of having a Masseur round to yours for a good massage, or some Acupuncture.  some GP (UK) practices prescribe it and pay for it. it has a good track record an algesic.

       sincerely hope things get better for you.

      C

    • Posted

      Thank you so much for your message, I have never been offered Tramadol but might ask about it if the pain doesn't ease over the next few days. Unfortunately I can't have amitriptylne because it effects another health condition I have so my doctors won't prescribe me it. I have thought about getting a masseur round and will look into it.

      Thank you so much for all your help and hope you're doing okay too

    • Posted

      Hi Mike.

      thanks for the 'heads up' on that BBC 1 prog.. it was rather touching. what a beautiful soul she is, so loving & compassionate in spite of her own emotional and physical pain. i feel ashamed as i'm not contributing anything to society coz of this horrible condition.

      best wishes

      C

    • Posted

      Hi Emily

      I hope the acuteness of the back pain has eased somewhat by now.

      I just remembered that the 'TENS' machine may well help the backpain if you can't get to a Chiropractor. BTW, with headaches/neck and backpain, that would suggest something is out of sync in your back. a Mactimony Chiropractor would be necessary to sort that out i.e. at the pain origin/causation.  the Mactimony Chiro's. are very very gentle. one sorted my back pain when my back keep ''going out'' during acute episodes of ME.  my Chiro. (very kind/gentle) came to the house as I wasn't able to get to his. usually I was back on my feet within 48 hrs.  

      as far as I know (but not sure) that you can get the TENS machine on the NHS i.e., your GP can supply it whether on temporary loan basis or otherwise, that's if u live in the UK. 

      all good luck Emily with it Emily.

      C

    • Posted

      Thank you for the advice, My back pain etc has unfortunately not eased. But I will be going back to the doctors on Monday and will be asking to get referred to a pain clinic (the a&e consultant reccomended it) and I think you can get a tens machine from there.

      Hope you're doing okay.

    • Posted

      Hi emily

      I hope the pain clinic come up with something positive to at the very least help with the back pain. it would be good if your got the TENS. at least it would take the edge off the pain. 

      all good luck with your appointment.......I presume that's tomorrow.

      C

    • Posted

      I went to my appointment the other day and they have referred me to the pain clinic so hopefully I'll be hearing from them in a few weeks about an appointment. Just hoping they have some advice.

      Thank you again

  • Posted

    HI there,

    have you you tried co-codamol?

    comes in 2 strength.

    i take the 30/500 and helps but yes side effects.

    Also take Amitriptyline but been taking it for maybe 17 plus years and now stopped working when it comes to helping me sleep but good for nerve pain.

    Natures best do a turmeric tablet and have heard turmeric is good for some pain.  This also helped my immune system one winter when I was picking up bugs just by going to the corner shop.

    For my sore back I find stretching exercises which I just had to figure out on my own but works wonders. Pain meds useless for this.

    Hope you find your answers very soon.

    Keep on going!

    • Posted

      Hi, I haven't tried co codamol but I have tried codeine and didn't seem to find any benefit from it.

      I did want to try amitriptyline because I have heard a lot of good things about it compared to some other tablets but it interacts with another health condition I have so at the moment my doctor isn't happy prescribing me it.

      I have heard the same about turmeric and will be buying some soon.

      Thank you so much for all your advice and hope you're doing okay

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