Please can someone enlighten me, I feel like I am going insane

Finally after waiting three months I attended a certain fibro clinic in London. Was seen by physio, consultant and therapists. Came away feeling totally deflated as was not examined, was told there is no hands on work and basically accept old life has gone and learn to embrace the new.

I tried to explain that a lot of my pain is down to the fact that I am walking badly and holding myself in a bad way as compensation for the pain in turn causing isolation of the right muscles etc.

I then saw a private physio on Thursday who examined me and said I was in a total mess, my spine was twisted causing a trapped nerve down my leg which was causing numbness etc, which is me walking badly cause of fibro pain.

Felt great yesterday but last night fibro decided that I tried to mess with him and he has came back with all guns blasting, I am in tears this morning and feel totally deflated.

So my question is, do fibro patience have a no hands on policy cause it causes flare ups? how do you then deal with muscles and nerve pain that has been caused because we hold, walk etc badly cause of pain?

basically HELP!

16 Replies

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  • Hi there,

    Eeeeesh, this is a bit of a hard one to answer with specificity because I think we all have different ways of handling pain and as pain is so individual to each person, what works for one doesn't necessarily work for another! However I would take issue with the consultant who told you it was a hands off situation. I think some people can be helped with massage tailored to their needs and even some osteopathy if that suits them. I have found massage to be almost essential and also to keep myself moving as I know from years ago when I let a flare reduce my movement considerably, and it took a lot of work to regain the level of mobility I am now lucky to have,

    So take courage, there are things you can do that can and will help you, even if it's down to simple things like pacing and mindfulness, being aware of what you are doing, what you are capable of doing and trying to keep positive and not get sucked into the quagmire of despair which can so easily engulf one.

    I'm sending lots of positive healing , soothing and strengthening vibes your way 😊 😊

    Foggy x

  • Hello, I cant stand being touched, even taking a shower can be painful and so i take a lot of baths, that and rest are the only things that help me.

    i hope that you soon find what helps you.

    Sue :)

  • I don't know much, but I have been sent to physio 3 times before I was diagnosed and it was agony. Each time I went the pain only got worse and he insisted on massaging hard! Ugh one time my husband came with me and he said he couldn't look after a minute because of the look of pain on my face. I was crippled after every session and he didn't listen to me saying it hurt. He said it should hurt my muscles were in spasm.... And I'm like yes I know! So yeah maybe it was a good thing that you weren't touched!

    Starrie x

    Edit for spelling!

  • When I was sent for physio on the NHS I was told that they wouldn't touch a fibro patient - it was all hands-off because we'd be too sensitive to touch. However, I have a brilliant private physio I go to sometimes (when I can afford to treat myself!) and he does *very* gentle trigger point massage - which helps a lot.

    Mind you, I'm not convinced my fibro diagnosis is correct. I'm not at all sensitive to touch, and I've more recently had the explanation of osteoarthritis for all my joint pains (which are the only pains I have).

    So I guess it depends on whether you *are* sensitive to touch or not. If you're not, and if you can afford a physio privately, then I think you are absolutely correct in saying that problems with movement and posture need to be addressed and it's wise to go down the private route to have this done. Personally, I think the NHS blanket refusal to do hands-on physio with fibro patients is a bit daft.

  • I am not sensitive to touch but I do have lots of trigger spots that ache and am sore all over. Some days feels like someone beat me with a ballbat...... That is when I resort to the pain lotions and patches. Pain meds on regular basis til the flare calms . Keep searching til you find what works best for you .

  • Sorry you feel so poorly, the only thing that helps me is deep relaxation, this has to be taught to you it doesn't come naturally, I do hope you feel better soon xx

  • I wish I could learn to relax dear Lou, I find it extremely hard !!

    I was at the physio on Wednesday and as she was showing me and getting me to do the required exercises, she had to keep reminding me to breathe. she said as soon as I concentrated on getting my muscles working I didn't breathe😧 Hhhhmmm, yet she says I am very body aware, but that it doesn't help that my trapezius in particular is rock solid at the moment as are my deltoids and pectoral muscles.......oh life is such fun if you don't weaken tra la .............. πŸ˜³πŸ˜³πŸ‘ŽπŸ»πŸ˜―πŸ˜˜

  • It took me a very long time to learn, your physio is spot on about the breathing we tend to have shallow breathing when in pain xx

  • It seems to me that breathing is a rather good life enhancing action πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜˜

  • Hi I have been put on dulexatine which helps with the neurological pain cuts out me sleeping all the time but I don't sleep well at moment , which is being looked into , I find when had the opportunity a hot tub is amazing , and massage.

    I also found pain and fatigue clinic helped , I can walk but get so fatigued at moment I don't go far ,and I suffer for it afterwards.

    You have to do what's right for you ,you know what your body can deal with , my worse issue is the shower that feels like thousands of shards of glass hitting my skin



  • I am so genuinely sorry to read that you are suffering and struggling so much with your pain, and I want to sincerely wish you all the best of luck with finding some resolution and relief to this.

    It may help to talk to your GP about different medication if yours is not working for you. I personally have a TENS Machine that I find helps a great deal.

    All my hopes and dreams for you


  • I also have Tens Unit ( used it tonight). Really helps when butt muscles spasm or lock up . I have the one made by Drive and not expensive . Has really helped .

  • I highly rate my TENS, I wouldn't be without it!

  • I AGREE,

  • Deep pressure especially on the sciatic seems to make the muscles release and give me relief . For other areas, I find the "trigger point" and cover it with a Salonpas pain patch. Many many nights I have 10 + patches. I also use a lotion called "Two Old Goats". I know funny name but it works !!!! Google it, you can order thru Internet . Pace yourself and rest between even the simplest of activities . So hard, especially when you have been active all your life . 😘

  • I'm not sure whether they won't touch you because they are worried about making things worse. I find massage is helpful, as long as it is gentle. I also use a chiropractor because I have an ongoing back condition which means my pelvis goes out of alignment. If that happens the pain is awful, so any discomfort having it put right is worth it to me. Do hope you find some relief soon. MariLiz

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