Fibro' and the eyes ... — Scope | Disability forum
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Fibro' and the eyes ...

WelshBlue
WelshBlue Community member Posts: 703 Pioneering
1.30am ... I'm sat here in just my boxers, because right now I can't bear any clothing touching me, my whole body feeling like a boiled kettle is being poured over me

I can live with that, it's almost second nature - what I can't bear, and curious to know if any other sufferers ever experience it ... 'eye pain'.  Like needles being stabbed into the eyes sort of pain.  It drives me bonkers - I almost hope it's just me.  Not wanting others to feel this ... 

Comments

  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi @WelshBlue, I am sorry to read of what you are experiencing.
    Yes, I also get this type of sharp eye pain. I'm not sure that it's solely due to the Fibromyalgia as I also have Macular degeneration, cataracts and a condition called Pattern Dystrophy. My vision is quite poor. I'm sure that I also get eye muscle fatigue due to having ME as well. I can't say that I have a solution for the eye pain
    In fact, I used to get quite panicky as the pain was so bad. Now I try not to panic and rest until it subsides. 
    I wish you all the best. Sorry I can't be of much help. 

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    I have fibromyalgia and visual stress - which is like a pressure pain behind the eye - so yes, I do indeed experience this too  <3
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 9,748 Disability Gamechanger
    I have nystagmus so even though I don't have the same condition I can relate to you. 
  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    @Oxonlady and @L_Volunteer ... glad I'm not going mad and it's not just me.   In the grand scheme of things it's not often I suffer from it, but when I do I'm like a big baby ... 
    @durhamjaide2001 ... I'd never heard of nystagmus, and can only imagine what it must be like to suffer from it.

    Apologies for the late reply, a PTSD relapse caused a Fibro' flare up from hell and am only just getting over it
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    I had never linked the two before you mentioned it @WelshBlue so I thank you too. I found your post particularly intriguing and thought-provoking. 

    What helps you when you suffer from it? At the peak, I found applying a black and grey colour filter particularly helpful as the colour was too much for my eyes. Though, I do also wear glasses daily now which have anti-glare and a coloured tint. 

    Please don't apologise for the late reply. The most important thing is that you feel comfortable reaching out to us when you want and need to talk to us. It sounds really difficult that you have had a PTSD relapse which caused a fibro flare-up.

    How are you feeling at the moment? I notice you have mentioned you are just getting over it but I am wondering what this looks like for you at the moment. Only if you wish to share this with us though, of course.

    Here for you and listening to you if you would like to share more with us  <3
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    Thanks @L_Volunteer

    TBH with my eyes I used to just sit and whimper   whine about it  ... but recently I've been using a warm flannel and that brings some relief.  It doesn't really stop it, but does make it more bearable/ soothing.
    If it is a fibro' symptom that some of us get, it's thankfully not long lasting.  An hour is the most I've experienced ... but for me anything with the eyes is a no-no .. even looking at close ups on tv.

    My past career there was always flying debris and I ended up in A&E a few times with stuff in my eyes and I'm sure I made less fuss when I lost a thumb and 2 fingers to a chainsaw accident lol.

    I'm getting the PTSD relapse under control thanks, it's not easy but thanks to the coping protocols in place and knowing I've got a fantastic support network ... I may never be whole again, but I will be more together

    I had a medication review today with a Psychiatrist on my GP's wish, and he's increased my Duloxetine from 60mg to 120mg ... just for 4 months to see  where i go with it.  The aim is to bring my fibro pain down along with the 'memories' because they seem to go hand in hand with me.
    Plus, they want to stabilise my mood and pain for when I start EMDR therapy in the next couple of weeks.  
    I'm under no illusions as to how hard it's going to be - 8 months exposure therapy totally wiped me out

    It is what it is, I'm very lucky and grateful for my help with all this from the professionals.

    It's far better than losing myself in an alcoholic stupor for weeks and putting god knows what into my body just to cope

    Thanks for the interest and I hope you're going through some remission with your symptons
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    It's good to hear your getting the help and support you need @WelshBlue, even if it's hard work sometimes.
    It's far better than losing myself in an alcoholic stupor for weeks and putting god knows what into my body just to cope
    Would you mind me asking if this is something you had to deal with in the past, and if so, do you feel you're getting enough support to manage recovering now? 

    It's a bit of a cliche phrase, but the road to recovery is rarely straightforward. It sounds like you're in a positive place right now, and I hope the community here can be an additional support for you during this time, so please don't hesitate to reach out if you need to. 
    Online Community Coordinator
    Scope

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  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    Hi @Alex_Scope ... I don't mind you asking at all.   I'm not ashamed of it - the reverse, proud that I came through it.  Alcohol and substance abuse was something I used to block out my rape trauma of 1990.

    26 years of destructive behaviour.  Not to mention risk taking.   Until 2016 when I first started experiencing the fibromyalgia symptoms and my body had the first taste of alcohol intolerance,  Scared the life out of me TBH.  From that moment on I haven't touched a drop of alcohol or an illicit drug

    Before that I did have support, my surgery even paid for me to see an independent Alcohol and Substance Abuse counsellor ... but sadly because of my non acceptance of what had happened to me, this failed.

    It wasn't until 2018 when the PTSD had got a grip of me, and I was all set to commit suicide ... I didn't want to die - I just didn't know how to live with the flashbacks and how I was feeling constantly.  Luckily a random knock on the door stopped those plans.   Then and there I wrote a letter to my GP outlining everything.

    Long story short ... my GP saw me every week for 6 months until I got to see a Clinical Psychologist who has been absolutely amazing.  For 18 months we did exposure therapy and got me to a really good place
    until a relapse last year and now we're gearing up for EMDR

    I have been extremely lucky in the support I've received for all MH issues.  From all involved.
    I must add my wife to that ... she has been fantastic, I don't know how she's put up with me lol

    It's a bit of a cliche phrase, but the road to recovery is rarely straightforward

    Not a cliche' at all.  It is hard, but something worth having is worth putting the hard yards in for

    Thanks for the support and kind words
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    You're welcome @WelshBlue thanks for explaining everything so well.

    I am sorry to hear about the rape and substance abuse that followed it, it really does sound like you've come a long way since, so you should be very proud, certainly :) 

    If it helps, something to support you in the lead up the your EMDR therapy might be these resources on self-care, one from Rape Crisis, and the other from Mind, which focuses on PTSD.

    Please keep us up to date with how things go, I'm sure you'll be putting in more than enough hard yards! 

    Hope you enjoy the rest of your week, and you know where to find us if you need anything. 

    Online Community Coordinator
    Scope

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  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    Thanks @Alex_Scope for the links

    Compared to many I'm doing OK.  In all aspects of my life.  
    I'm no longer letting traumas (sexual and physical injuries) and then a disability on top define me

    When I reach 100 I want to be able to put 2 fingers up to any superior beings there may be and say, "Good try but you didn't break me"  B):smiley:  :p


  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger

    I, indeed, do seem to have these symptoms under control at the moment @WelshBlue. Thank you for your kindness.

    However, as @Alex_Scope said, it is rarely straightforward. Now that I have these symptoms under control, I have thyroid symptoms!

    Oh, ‘good old’ fibro life hey! It sounds like you have come such a long way and I am really proud of you for that.

    The support sounds really key. Both from professionals to your wife and everyone else involved.

    Glad to hear you are doing ok. However, what others are experiencing/feeling doesn’t take away from your experiences/feelings.

    We are all here for you and listening to you if you would like to share more with us about how you are currently doing :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    Thanks @L_Volunteer ... Fibro' Life is never dull.  Wish the pain was  :p ... Been kicked out of bed because I keep jerking with the 'electric shock' sensation, which is then followed by the burning sensation ... which is followed by a swearing outburst  :)  

    I am very lucky with my support network and I thank my blessings for that, when so many have to wait so long.  4 months from referral to actually seeing a Consultant Psychiatrist for a medication review in this day and age is pretty good.  Very good actually.

    Will be interesting to see how doubling my dose of Duloxetine from 60mg to 120mg treats the Fibro' pain and my mood.  Thankfully he understood I didn't want anything that 'numbs' me too much emotionally and that I want to feel emotion to get the best out of EMDR when it kicks off on Friday.  6 months building up to it ... again very lucky when so many people struggle to see a Psychologist

    I hope your Thyroid problems are able to be resolved quickly.  Take care
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Oh, your humour @WelshBlue - Made me giggle and smile, thank you. Really glad you have a good support network, you need and deserve it. 

    I hope the medication helps. It is really important that he understood what you are looking for, hopefully, he can support you through it.

    Has it begun yet? If so, I am just wondering how you are feeling at the moment. Only if you wish to share that with us though, of course. 

    Please note, thanks for your kindness  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    @L_Volunteer ... thanks.  When I lose my sense of humour, then I know the world has won.  
    No matter what life has thrown at me, I try to keep cracking jokes even if they are very, very dark sometimes.

    The medication has been trials and tribulations with the unread email from the Psychiatrist to my surgery,  to prescriptions going missing ... 4 days without the Duloxetine got very interesting today the 4th day - I started to see why the withdrawals are classed as 'severe'.  The receptionist could tell that I wasn't leaving without the 'script  :p
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Never let the world steal your sense of humour @WelshBlue! Keep at the jokes.

    That does, indeed, sound like trial and tribulation! How is it all going currently for you?  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

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