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Hi all I've just found this site and would like to get involved

Posted , 9 users are following.

paul020458
paul020458

Briefly I'm male 56 and I've had upper spinal problems for 30 yrs and although I have worked full time up until 6 years ago I have now been struck down with Chronic Fatigue Syndrome closely followed by Fibromyalgia.

None of the above are nice and together they often prove to be the perfect storm, so to speak. I'm on lots of meds and cannot work now sadly. Perhaps some others on this site may have experience with multiple health problems similar to mine.

Just been advised that I need to have spinal epidural and possibly cortisone injections to stem the terrible spinal pain. I'm already on morphine and other meds like Gabapentin, Amytriptaline Tramadol etc.

If I can be of help in answering any questions or if others can help me I would really appreciate any help given to me.

Thanks now from Paul.

2 likes, 29 replies

29 Replies

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  • sevgul88448
    sevgul88448 paul020458

    Posted

    Hi Paul thanks for your post

    just wanted to ask what painkillers help you the most ? I have been on Codeine phosphate but after taking sometimes up to 8-10 a day my GP stopped them an put me on 2 anight of Nortripyline which are absolutely rubbish.My GP is not very understanding of Fibro !Did your GP diagnose Fibro for you ? Thanks in advance for your reply an take care !

    • terig
      terig sevgul88448

      Posted

      hi everyone....just wondering is anyone goes to a support group?
    • paul020458
      paul020458 sevgul88448

      Posted

      Hi at the moment I'm on Tramadol/Gabapentin/Amytriptaline/Naproxen and Morphine slow release. I'm just coming off the Amytriptaline as for me it is rubbish and causes me more problems.

      bear in mind that I have a severe spinal problem as well as FMS so the Morphine was initially given me for that.

      my GP has had CFS so he is very understanding.he initiated all the standard tests but crucially he sent me to a rhuematoligist who verified the FMS.

      Half your battle will be to get a GP on your side, I know some have had to change GP because of the misunderstanding of this illness that is still within the medical society.

      Take care. And have a good day.

    • paul020458
      paul020458 terig

      Posted

      Hi again

      I'm in a chronic pain support group and just started a special Tai Chi form for chronic pain sufferers if that's any help.

    • niz41
      niz41 paul020458

      Posted

      Hi Paul,

      I was interested to hear that you have started Tai Chi, I hope it helps ease your pain and hope you will keep us posted re. your progress. I recently spoke to a friend who attends a Tai Chi class where the instructor is a lady in her 60's who had been confined to a wheelchair for several years previously suffering from Fibro and back pain. She is now fully fit. I am thinking of giving it a try in the near future.

      Best wishes.

    • Xxxxxtttttttttt
      Xxxxxtttttttttt paul020458

      Posted

      Forgot to mention, the pain relief I take is co-codamol, tramadol and oramorph. I also have to take lansoprasole, cetirizine hydrochloride, calceous vitamin D, atorvastatin, fenofibrate and citalopram.
  • Xxxxxtttttttttt
    Xxxxxtttttttttt paul020458

    Posted

    hi Paul, this is my first time on this site. I have never really bothered with forums but thout it may help. I am in UK too and have just started taking caprylic acid. My colleague told me it was recommended to her, or rather looking into yeast overgrowth, so I started checking up on it too. I am 46 and have suffered since a spine and pelvis injury 22 years ago. At first I was off sick and practically housebound for 4 years, but pushed myself back into work gradually. I have had periods off but managed quite well until the last episode which had me off for 7 months. I only went back last week so I am hoping I can stay back as it has been crippling me financially being off, defaulted on my mortgage for the first time in my life, which of course adds to the stress, which then majorly contributes to the pain! I find it so difficult at times I just want to take all of my painkillers and be done with it, but I quickly think about the impact it would have on my children. When you are crying so bad with pain though it is difficult to think clearly. I don't even know for sure it is fibro though. I think it may be a cop out for doctors as they seem to diagnose it to anyone they cannot determine what the pain is easily! It is very frustrating so I am pinning all my hopes on this caprylic acid now! I hope you get some relief

    sharon x

  • JerseyKaz
    JerseyKaz paul020458

    Posted

    HI Paul, I'm 40 something and have CFS and fibro, but thankfully no spinal issues. I have almost finished a course of graded exercise therapy which has been quite beneficial. In my limited knowledge, epidurals can be a bit hit and miss and quite often a few are needed before any relief but for some they can be a huge help. I take brufen for pain when I really have to, but hot baths help tremedously. I am considering starting a local support group as there is nothing in my area at all. I f anyone can give me any advice on what kinda things a group would find helpful I'd apprecaite it. Also, as re the candida, I think there is a connection somewhere and I found a mostly sugar free diet helps. I dont like taking tablets as all the side effects, but I do take quite a few different vitamin and mineral supplements. Restless leg syndrome is very common in CFS and I find a tiny dose of ropinerole has hugely helped at night. Happy bank holidays!! cheesygrinJK
    • Xxxxxtttttttttt
      Xxxxxtttttttttt JerseyKaz

      Posted

      hi Kaz, what did you do in the graded exercise therapy? And what is ropinerole? I suffer terribly with restless legs at night and end up banging them and throwing them all over the place -must to the disgust of my cats, dog and partner! Lol
    • Xxxxxtttttttttt
      Xxxxxtttttttttt JerseyKaz

      Posted

      also could this be why my lower legs and feet are always cold lately? This is a very new thing for me I have never suffered with cold legs or feet before, that I can remember
    • JerseyKaz
      JerseyKaz Xxxxxtttttttttt

      Posted

      HI Shaz, I had feet that would go suddenly cold for some reason...they even did MRIs with dye injections to see if it was my circulation! (all normal) Ropinerole is actually used in Parkinsons patients, however, it has been found to be effective in RLS in tiny doses. I only take 0.25mg at night and it has made a huge difference. I dont annoy my husband any more (well not at night! lol) and I can finally get to sleep fairly quickly without all the horrible sensations in my legs. Graded exercise therapy was done with a trained physio and basically its customised gradual exercise and balancing of your lifestyle and chores etc so you dont 'boom and bust' as they call it. I started just doing 30 sec walks and now I'm up to 10 min a day, on top of all my usual stuff. It's very practical..and exercise doesn't necessarily mean a work out..it can mean just a short walk or cycle that will gradually increase each week as you are able but you do it at least 5 days a week. It wont stop relapses but it does put you in a better place to recover from them. cheesygrinJK
    • Xxxxxtttttttttt
      Xxxxxtttttttttt JerseyKaz

      Posted

      thats great thanks. I will talk to my GP as the restless legs are getting worse each night and the cold in my feet and lower legs. Some days I can actually walk for quite a long time so it varies from day to day with me. Thanks for the advice x
    • Xxxxxtttttttttt
      Xxxxxtttttttttt terig

      Posted

      yeah me too and yet I was always too warm! This has been quite sudden for me, the coldness
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