New to site ๐Ÿ˜Š

Hi all , I've been diagnosed with E.B.V. , Fibromyalgia/ M.E for about a year , and I've been left to manage it on my own , my doc just want to keep giving me pain killers and I don't want to just take them , plus they give me rebound headaches . I'm really struggling to manage so looking for advice, main things at moment are the pain , I'm looking for other ways to manage it and the constant sore throat / swollen glands . Also any weight loss tips , I've piled on weight in the last year , exercise is impossible right now , each time I try I spend the next two weeks in bed ๐Ÿ˜ฑ , as I'm sure many of you know . I take vitamin b -100 2x daily, .

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  • Welcome and have you tried pacing - do a little rest, do a little, stay within your energy envelope and avoid boom and bust of exercise that knocks you out for days after. :-)

  • No I havnt , I've gone all out like I would have normally a couple of years ago .... I do need to learn to adjust and accept I have this and live within the limits , probably will have a better life in the end !!! Just hard adjusting . Sounds good though doing a little when I can then resting then more if I can , will be giving it a go , thanks .

  • Welcome Moomin,

    like Ian says, try exercise in small amounts and then allow yourself to rest. I am not able to do aerobic exercise but I do Pilates, some others do Tai Chi or Yoga.

    Is the medication you take for the pain from your doctor? If so you really need to go back and explain that you are getting rebound headaches and maybe they can try a different type. From what I have learned being on here it does seem to be trial and error to get the right medication and what suits one may not necessarily suit another :)

    I hope you can get your pain level sorted. Let us know how you get on :)

  • Hi , have been looking at yoga , so might give that a go . Yes my medication is from doctors, I have told him about rebound headaches , but I'm not really getting anywhere with him at the moment , I'm going to ask to see a different doctor in the practice . It doesn't look like there's an easy answer to any of this . ๐Ÿ˜”

  • A different doctor sounds like a good way to start :)

    Keep asking the questions. You have hit the nail on the head, there are no easy answers, but really hope you can get some :)

  • Welcome to the world of fybro I was told in the way you have been over 25 years ago go home and live with it. I thought things had improved nowadays i think some drs are better than others. Like everyone says it is a matter of learning how much you can do without over doing it you will get a balance eventually. I think accepting you have this horrible thing is also a big thing i still fight it now because my pain is in the joints and i know i have osteoarthritis as well and get so sick of being told the pain is in my head.

    The weight may not be being helped by your meds depending what you are on and unfortunately it becomes a vicious circle if you cant exercise. But my weight has now levelled out but i have had a lot of stress in the last year so i think that has caused a lot of it.

    Good luck with getting things on an even keel. Everyone on here is very helpful and there is always someone to talk to.

    Take care

    Jackie

  • Thank you , I have other illnesses that I take various medication for , I'm sure your right about them maybe causing some weight issues, but I also need to learn how to pace myself. Hopefully I can get some good advice from this site now .

  • Hello and welcome here :-), I'm a fellow 'newbie' Moomin,

    I read your post and feel empathy - and I also would say very similar things to the others - about being consistently within your energy envelope - even if this means only 5-10 mins activity then rest and relax for the rest of the hour. I know from experience the incredible care it takes to begin to leave some 'credit' in the energy 'bank' and help the body heal, as well as sustain and enjoy other activities.

    (Of course, you may be much further on than this - so you would adjust accordingly).

    I realise It takes some experimenting to find the starting level. The idea is to find something you can sustain each day, leaving a bit in reserve, to help avoid those blips that set you (and any of us) right back - a bit like an energy 'bank account'.

    And if you're used to being 'full-on' it feels really strange to stop activities way before reaching the edge of the 'envelope'.

    Creating a sense of 'conscious relaxation' also helps the healing jounrey. I think that many of us are experiencing life situations that call for our every strength. It might make a difference to create space each day to consciously relax. Oh, I know it takes practice...

    One thing you mention, is the sore throat and swollen glands and also that 'set back' after exercise (so-called "post exertional malaise"). It feels absolutely right not to 'push' yourself more than you are ready. There's wisdom in starting in incredibly gentle steps, say, the gentle yoga that you are thinking about.

    For example, (again depending on your initial starting point which might be considerably higher) it might be 1 minute a day at first, then sustain for 2 weeks, then increase to 2 minutes, then sustain...and so on, gradually building-up. So if you can already comfortably 'do' 30 minutes, then probably you would start a bit less than that, say 20 minutes, so you can sustain it every day for a fortnight - then if you are ready, you can increase by 10 %, to 22 minutes, then sustain, then increase to 25 minutes...and so on, rather than one day when you do 30 minutes, then glands get more swollen and need to go back to bed. Does that make some sense?

    I just came across the work of Dr Smith the other day and find it useful, so just in case of help, here's the link: me-cfs-treatment.com/

    (and if you take a look at it, best to go in small chunks, a page or two at a time, to keep energy balances as far as humanly possible)

    Hope that helps a little.

  • Thank you rockrose ,

    I do understand what you mean and I will be putting into practice ' slowly ' ๐Ÿ˜›

  • You're welcome Moomin and every encouragement :-)

  • Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! I have pasted you a link below to our mother site FibroAction which hosts loads of useful Fibro information.

    fibroaction.org

    I sincerely look forward to seeing you around the site.

    All my hopes and dreams for you

    Ken

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