Flare up Pain FND

[Crystallmatters]

Hi Everyone,

An up date to pushing the exercise, its kind of working well so far been around fourteen weeks now, flare ups are bad, FND moves, I have to put into practice all I learnt at both optimise and my current help from Oxford Sandra , who understands as much as you can about FND , Flare ups and my brains roll in this, My problem is that when the Pain comes on and disables me at the same time my brain goes into a mixture of deep upset, mixed of course with crippling pain and a bit of FND to top it all up, so it takes me sometimes a little while to stop and recognise why I have now thrown myself into deep depression mixed with anxiety, worry , concern my brain starting to catastrophizing the situation this bad place I am in hurting all over, assuming the worst, then my brain pulls on child hood fight in flight systems, so very unhelpful, so sorry in this moment of distress, I manage to tell myself first it ok, my brain is causing this, pull on my tool kit, now I have stopped recognised the situation, I can put the first building block to recovery, Have compassion for myself, can I take my medication, except , rest, um don't have any choice I am disarmed , tell myself I know only for a while and if I don't start thinking about this situation in a compassionate, respectful way things will not recover so quickly, so now do I get in a hot bath under a shower, just get warm, feel the pain coming up through my foot, recognise it tell it it is ok along with the spine killing me the leg not working miss wiring, great this, now meds, warmth , comfort, Music, acceptance, know my emotional thoughts through a fight in flight response is pulling on bad child hood abuse for me just being told I was useless all the time thick , stupid and then smacked, punched, my hair pulled or have my toy broken in front of me, constantly being threatened with hot water or the stick from the drying cabinet, not allowed to go out, watching my sister going through this, I did not know this was child abuse , hard to believe my parents where both teachers , they died early my father at 61 and my mother at 63, at first it was upsetting, but very quickly it became a great relief, no more expectations, why am I telling use this, because now thanks to Sandra Wiltshire a brilliant physiocratic pain specialist, she explained to me my cognitive coping mechanisms are mixing past feelings and the pain I am in, the fight in flight response is making my pain worse. I can now stop eventually and calm this situation, know it was not my fault my past, know that this is causing my pain and FND to be worse a hundred times worse. Pain feeling useless, its ok, I am not, Brain its ok, I have fully backed down, know this could be an hour or three days, longer if I don't pull on my knowledge about this situation, Meds, get warm, , get comfortable, put on a lidocaine patch low back, My I Pad music for pain or Shamanic -spiritual music, concentrate on the tune the beat, be respectful of my situation change the music around, my head hurts, brain fog, tell myself its ok part of the journey to recovery, what's the difference now to a year ago, 30 years ago, I get it, its true pain in the brain, its real, it hurts, I am stronger through the gym and playing pickable, even though it hurts, it would anyway, how I think tick, bring in emotions will change the pathway of recovery.

So why did I right this, sorry, I did not think it would be so long, because, I have learnt for me everything in life , including the past, the unknown think patterns, play a part in my pain, Sandra has made me see the pain circle, I realise that my anxiety , Stress , will make my pain worse, my recovery longer, well why would you not be stressed and have anxiety in this world of the NHS facing terrible staff shortage, hospitals falling apart, No doctor or normal hospital even understanding pain and the Brain, let alone FND. Really not helpful being told it is all in our head.

For me it started with losing L5 disc and being told I had just pulled my sacrum, three years, loads of scans and know one picked up, L5 had burst, thats what I call it and my back dropped, then many failed surgery's , now what's amazing , I have met people in terrible pain with FND and they suffer through, just abuse or PSTD, so many different symptom's. I never knew through one hell of a journey. That , I was correct , I do suffer real pain , pain is real, injury is real, the whole body in certain circumstances is effected . including my gut.

I will live life with this but how I think about my situation and what is going on will effect my outcome. Great, so I am trying, very trying. At the moment the exercise is working, body balance is good for me, I have more strength to deal with a bad situation, I feel better for doing things and I realise, I will get a flare up, weather I do this or not.

I hope this crazy long up date helps a few of you realise, we are not mad, we do need more help

and understanding, otherwise that's another pain to mix up our brain with more.

Its late I am tired so I am going to leave it there. Love to you all , I am sorry you all suffer to you are not alone and apparently its ok. xxx

[PainConcernHelpline Moderator Community Champion Pain Concern]

Hi there,

Admin here. Thank you for sharing your story. It sounds like you are doing lots to manage your pain and it's good that you've been able to talk through your childhood experiences.

You said you had been 'pushing the exercise' and experiencing flare ups. I wondered if you had tried 'pacing' your activity so your nervous system gradually gets used to a more subtle increase in activity? By doing this you are less likely to flare up and some people even find a reduction in their pain. Our leaflet called 'Manage your pain' explains about the sensitisation process and discusses becoming more active as well as how to mange flare ups : painconcern.org.uk/manage-y...

You also spoke about stress and how this plays a part in your pain. Having pain is really stressful and something that most people with chronic pain experience. It sounds like you do lots to manage this already. Our 'Stress, pain and relaxation' leaflet explains about the pain/stress cycle. It has two very simple relaxation exercises to try which are great if you are short on time. Both can also help with getting to sleep and are also good to use if you are having a flare up : painconcern.org.uk/stress-p...

Best wishes,

Pain Concern moderator

[Crystallmatters in reply to PainConcernHelpline]

Thank you so much , I will later read up on the leaflets and treasure your help/ Thanks again David

[D41sy]

Hi lm truly sorry for your pain the physical and the emotional and mental pain. Could l ask about FND which l understand to be Functional Neurological Disorder? Or do u have a different condition called FND I didnt know it causes pain and mental health stress etc my daughter was diagnoaed and she has non epileptic seizures which are different to her epileptic seizures but she has real pain issues we thought we fi romyalgemia but now lm wondering. More info please🙏

[Crystallmatters in reply to D41sy]

Hi Yes / Functional Neurological Disorder is what I suffer from, I have seen a couple of specialists but Oxford dragonised me as I did not have clue why I was having problems with my leg , foot, electric shocks, body jerks, brain fog, ending up in hospital waking up a day or two later not knowing what has happened, I have written about some of my experience's, how-ever, I want to answer your question and I am really sorry your daughter is suffering.

I can only ever talk about my experiences as Functional Neurological Disorder (FND) is a big umbrella and covers a lot of conditions, some similar, one must be careful as my experience in the South for the last twenty years plus and still only until recently it was a pretty unknown topic. To find specialists in the field used to be hard and even in certain hospitals and doctors they do not understand the condition, today more is done to help the NHS and others learn and understand more about FND , but it is a complex condition. I have the help now of the oxford team.

I had multiple failed lower back surgeries including screws left in the wrong place for three years, Pain was horrible and disabling , I tried to beat the pain in every way I could , to cut a long story short, until I had first the correct dragonises with a good understanding about FND and my condition, how to except with compassion and use many both calming technics as well as realising that many of the conditions I have out pain overload mixed with stress, anxiety, concern, frightened the unknown and know one knowing, makes my pain and FND worse.

The brain is where the pain is, the brain gets overloaded with my emotional catastrophising , worry, Pain, a child hood memory loop of feeling and all goes mentally very wrong. I cannot write in a few words the full picture. The sensory system in my body all sensors become more sensitive , the more often the more the brain loops memory on all accounts.

Living any experience, especially in childhood that is not a good feeling is remembered if by the unconscious memory, anything ???.

At the time of a body failure , what ever it is it is stress full , upsetting, worrying and so on this is an amplifier , volume control for more pain. When I have a bad flare up, my hole body hurts, pain beyond pain, fatigue, this is why after all the help recently from Oxford and the team at John Radcliffe , I have decided to take on board all there knowledge on my case, and excise, engage in fitness , go out again, knowing I must pace myself which I am still learning, not good at this, why because when Pain / FND /disability kicks in I have more muscle strength and fitness to cope with the knackering experience it brings.

For me the correct FND dragonises with understanding about my condition, learning about Pain and the Brain, Optimise at Oxford to learn how to bring the volume down on pain, having compassion, respect, for my condition and others close to me.

It is hard to believe what I hear, see, smell, touch, feel has such a profound effect on my body and my brain, with its sub conscious and now, deals with things in a cross wired way when my sensory system gets overloaded. We are all different so things will move and change for us all.

I hope this helps you and your daughter a little to understand the tip of the ice berg .It is a massive subject and effects us all differently. Love to you David xx