Daughter living with FND

System
System Posts: 220 Online Community Programme Lead
in Rare, invisible, and undiagnosed conditions
This discussion was created from comments split from: FND.

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  • a_2008liv
    a_2008liv Online Community Member Posts: 2 Listener
    My daughter is a fnd sufferer. It took a long time to get a diagnosis quite a few trips to hospital with chronic back pain (she does have prolapsed discs). Over 12 years she was prescribed every pain killer available and she really thought she was going mad. 
    After she was last admitted to hospital she was finally seen by a neuro specialist who gave her diagnosis. 
    She suffers with severe back pain hand tremors both her legs don't work has drop foot (she now has to wear splints to try and straighten her feet) weakness all down right side blurred vision incontinence depression and constant headache . She constantly uses a wheelchair. 
    We trolled the Internet for any information we could get and set a plan to try and help her as we are really struggling to get any support from NHS. We had community physio who decided they couldn't do anymore for her as symptoms where getting worse. 
    Has anyone else tried holistic therapy she is starting a trial period of it next week.
    Today for the 1st time in 5 months she stood . She played music and sang focusing on the song and stood for a few minutes unsupported it was like a miracle.
    Any advice anyone could give us would be greatly appreciated.

  • chiarieds
    chiarieds Online Community Member Posts: 16,791 Championing
    Hi @a_2008liv - & welcome to the community. Unfortunately this thread is over 3 years old, so hopefully Admin can make this into a new one for you. How lovely that your daughter was able to stand unsupported today. :)
    What sort of holistic therapy is your daughter going to try?
    May I suggest you have a look at this post: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain  I'm a great believer that the whole person should be looked at, both mind & body, so you may find some of the links helpful for your daughter to explore.
    Also have you come across this website for FND sufferers:? https://www.fndaction.org.uk/


  • a_2008liv
    a_2008liv Online Community Member Posts: 2 Listener
    We have booked a course of reiki holistic therapy.  It would be great if you could create a new thread thank you.
  • chiarieds
    chiarieds Online Community Member Posts: 16,791 Championing
    I have had a couple of sessions of Reiki & personally found it very relaxing. The Reiki master said they'd never seen anyone able to relax so quickly. That wasn't surprising as I used to give relaxation classes as a physio student. With that thought in mind, your daughter may find this diaphragmatic breathing, that was included in the first link I gave, helpful: https://www.nbt.nhs.uk/sites/default/files/attachments/Diaphragmatic Breathing.pdf   I suffer from chronic daily pain & use this every single day; it not only aids relaxation, it reduces stress & is helpful with pain.
    I hope your daughter finds Reiki helpful. :)
    Hi @Cher_Scope - please could you make a_2008liv's post into a new one, as it's on the end of ones from 2019. Thank you.


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