Is There any HOPE

Hi I have fibromyalgia have for a few years but I have cronic pain and its just getting worse I have had top medication but my doctors said there is no way I can have any more pain killers. I also found out the pain clinic wont take fibromyalgia patients cause its a waste of time I cannot have physio cause of the pain I am really struggling to cope I have tried everything but nothing works any suggestions on what I can do. am I going to be in a wheel chair.

9 Replies

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  • The pain clinic won't take fibro patients? 🙄

  • Hi there sorry to hear you are in pain you feel your running out of ideas,have they tried to change your meds at all ?? Does heat help at all?ive come off most things take codiene but not all the time as addictive , heat helps my bones, warm hot water bottles warm Epsom salts baths , lavender bags in the microwave , I'm constantly putting deep heat type gels on, my knee back, shoulders , seem to be the worst areas . Arthritis oestophrus all running through on my mums side of family all these horrid things that come our way. Xxx

  • Hi hon,

    Not to flog a dead horse but your doc kinda seems a bit useless. :( There's more to fibro treatment than just painkillers, and the pain clinic absolutely should be taking fibro patients. Is there any way to a) see if you can get a senior partner in your practice or a different doctor there, b) see if you can get a referral anyway - kinda force the issue?

    What are you on at the moment - we may be able to put together some questions or suggestions for you to bring up? I know it's horrid when a doc doesn't listen to you - happens far too often.

    *gentle virtual hugs*

  • The pain clinics seem to have really good ones and the rest are rubbish.

    I was on the latter 🙄

  • Have you seen a rheumatologist at all?

  • Hi I also have fibro and chronic pain is unbearable . I totally empathise with u. I bought myself a heated back brace from Amazon . U plug it in and wrap it round ur lower back . They have various ones designed for different areas of the body . Although this doesn't take pain away - I'm beginning to think nothing will do that -it does help ease it and is very soothing . I also use cold spray for my finger joints which is temporary but helps a bit . Hot baths also ease it a bit . I have a tens machine too . This is for short term use like if u need to walk out any where . It's distraction but nothing more . I really hope u can find ways to better cope with this crazy illness . Ur not alone ☺

  • Hello Michelle, There is always hope, I know it doesn't feel like it but there really is.

    Before I continue I would recommend readling the Dr Leon Chaitow Book on Fibro - its so positive and really really helpful. My fibro used to be awful, I would hobble into the doctors, barely able to move, in such pain, would sit down and just burst into tears - and they were no help at all to me, infact if anything they were making things worse.

    I am proof that things can improve, I followed Dr Leon Chaitows book, it is not an overnight solution but you chip away at it and before you now it, you start to get your live back.

    I am not free of fibro yet and I too am still chipping away but it has improved greatly and now I never have any pain relief, unless I have a bad flare up which thankfully doesn't happen much anymore.

    I really hope you can feel better soon but please believe there is always hope, don't listen to the doctors when they say you just have to live with it, that simply is not true, studies in America have proved that.

    Best wishes

    Debs

  • Sorry I forgot to say, don't worry of the pain clinic, they were no help either xx

  • My daughter has done the Lightning Process and it has made a huge difference, see old post below. She is now working part time and doing open university and has hope in her life again. Would recommend at least getting the book. I hope and pray you find relief.

    Here’s the post:

    A few weeks ago I posted asking if anyone had heard of the lightening process (LP). I had several replies advising caution. I read some links someone posted which were all very negative and calling it a scam, waste of money etc. However a friend of a friend with ME had done it with great success and my osteopath put me in touch with another ME person who had done it and it had transformed her life. However neither had had Fibromyalgia but the lady advised me to join the LP FB group and ask if there was anyone with fibromyalgia who had done this. I got lots of replies from people who were now living full pain free lives! Clearly you are only going to get people in the group who had success with this but even so I was impressed.

    After 3 years of trying to find relief for 19'year old Abby with her having been under pain management for 2 years, spending up to 20 hours a day in bed using heat pads to relieve the pain, my giving her 1.5 to 2 hours massage every night, she was only able to attend school for a couple of hours once or twice a week, had almost no social life and us spending a fortune on food supplements, allergy testing, magnetic mattress, osteopath treatment once a week etc etc we decided to give it a go. There is little we haven't already tried and this was a last resort to find a solution.

    So with some nervousness we enrolled my daughter onto the course. Due to her difficulty travelling which would increase her pain we decided to pay extra for one to one to give maximum chance of success. Abby had to do an online training of 4 hours and then a phone assessment to ensure she was fully on board. You have to fully commit to it for it to work.

    It works on the principle that brain pathways can be changed. It uses techniques similar to NLP, mindfulness, hypnosis ( but you are not at any time actually hypnotised). In essence it is quite simple to learn the technique but the training covers a lot of theory, much of which is similar to what they teach you in pain management.

    The course was 11 hrs in total over 3 consecutive days. I wondered if she would even cope with focusing for 4 hours at a time as after 3 hours of being out of bed she is normally climbing the walls with pain and exhausted.

    After day one there was already significant progress. She walked the dog for 15 minutes with no ill effects. She has not walked the dog for about 2 years and walking more than 5 minutes normally causes increased leg pain which can last days or weeks afterwards. She only had a short nap and did some work on her lap top with no,ill effects.

    The progress continued after days 2 and 3. She is needing less sleep, is reducing her reliance on heat pads, and we have reduced the length of massage I give her. Now 2 weeks on she is still doing really well. We have just come back from a 3 day theatre fest, travelling to London on the train, seeing 3 shows, doing lots of walking, including spending 3 hrs walking round shops with just a couple of breaks! Today she has had some additional pain in one of her legs, but probably no more than you would expect from having not walked for more than 5 minutes for at least a year!

    She is reducing down her medication gradually. She is not pain free yet but we are hopeful that this will happen over time, but even if it doesn't her quality of life is so much better. She can now start to think about her career and is no longer facing a life on benefits.

    I cannot tell you what a relief this is for us as a family. If you are able to afford it, I would strongly recommend trying this. No doubt it does not work for everyone and it will not cure structural damage but I still believe it can help with managing pain caused by arthritis etc. if your life is dominated by pain it has to be worth trying. If you cannot afford the course (it is expensive) there are several books available. The one Abby's trainer recommended was "Get the life you love now" by Phil Parker. It is better to do the course, but the book covers everything in the course and is inexpensive.

    The process can also be used for depression, anxiety etc.

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