Want to be left alone "most of the time".

Ojas_honestly

I have had my up and down with my chronic pain, episodes of paralysis, spasms, migraine, stiffness of left body dysfunction of lack of movement drooling excessively saliva etc, and it's difficult to explain it to anyone who doesn't understand FND or Chronic pain disorder.

I consider anyone who has not suffered "long-term illness" cannot understand my suffering and pains.

Is there anyone suffering with FND or Chronic pain, who can understand me?

Presently: I find it difficult to deal with explaining to people over and over and over again, and also feed up seeing people around you. I just want to be left alone most times "locked myself in my room" 24/7.

Share your thoughtful opinion or suggestions, I will really appreciate your contributions.

Thank you all.

frozenpelvis

morning Ojas, yes I can understand what you mean as I suffer with chronic pain and many chronic illnesses. However you have to spare a thought for your loved ones and friends they don’t want to see you suffer and they feel helpless not able to help you so the little they can do maybe will be to invade your space and alone time to make sure you are okay. Try working out a system that works for both you and them, that’s not intrusive to you and allows them to make sure you are okay. Sorry if this does not help.

Topcat71

I am thinking of you healing and you feel much better today. Take care .

Dendoo

I’ve just started cbd therapy for this for those with long term

Pain /conditions. It’s free with nhs you can even self refer.

DianeJ200

Morning me to chronic pain multiple schelrosis and lupus I suffer with but no one can see this so yes it's very hard living with an invisible disease.

sprinkly

Hi, I'm not in constant pain but I used to be before my ileostomy + partial stomach removal due to stomach cancer . I know exactly what you mean , my daughter has just recently been diagnosed with MS , in my experience I've found staying positive easier to deal with rather than the negative but that's ok for me to say at this moment in time as I dont suffer from pain any more , it's a diff8cult one, * the being left alone I completely understand as I get that now , when I feel like that I try to either go for a walk somewhere in nature or seaside, or submersed myself in hobby. Sounds simple yes but it helps , have you contacted pain management team? If you you ever want to reach out for a chat please do xx I feel your pain and frustrations ..

RTX1

Good morning all.

I fully agree! For example. whilst sat in front of my psychologist who was absolutely brilliant btw, she sat there talking asking questions and I said to her "You know I fully respect what you are doing, the hard work you have done in your life to achieve the status she is at today, BUT there is no man or woman on this earth who can fully understand me or what ive gone through because you have read about it in books or in classrooms".

She very lightly nodded.

What this and previous governments seem to ignore conveniently is the everyday pain, confusion, hard work and lacking in ability it is to live as normal life as possible, the government has labelled us all as "Numbers" and this is where the issues arise.

Its the same as I cant understand how majority of you guys struggle on a day to day basis, the pain and suffering of physical sufferers, how the cold weather affects you.

Last week or week before I had my renewal, to say it was long winded is an understatement and for myself im very fortunate that my wife did all the paperwork and I just signed, stood looking at masses and masses of long in depth questions when ive already answered these before when I made my claim is something that clarifies the ignorance of our government.

Where is these 13 or is it 16 question renewals that has been made recently to make the renewal process much easier? my wife spent hours filling in the paperwork and its NOT good enough! What about people who are on their own and suffer badly having to fill in masses of paperwork…..

MagpieWicca

Hi, Yes, I have FND, amongst other things, and it has become increasingly hard to cope with. I spent a month paralysed and it took months to get any use back, but am still partially paralysed, like you down my left side.

I was slowly building up my physio, which is a mix of Falls prevention, Long Covid Rehab., and stretching. It does help a lot, but as you know, it is hard to motivate. Once I get going, I find it makes coping better, and kind of creates its own energy. I do say hello to people when out walking, but mostly have little outside contact, which has got less and less.

Be kind to yourself, do what you need to do to get through the day, and do your best to have contact with those who understand, but stay away from avoidable stress. I try to remind myself that most people are not trying to be mean, they cannot understand, and it is hard to be around someone in pain. Pat yourself on the back for walking away from the rest, it is something I am slowly learning.

quinceorange24

Hi, everybody, I know now it feels when you don't want anyone around you because I feel like that most days.

I've fallen a couple of times and I have pains in lower back and my left wrist all time, so I have some idea of what it's like.

SAW.

egister

https://forum.scope.org.uk/discussion/comment/915769#Comment_915769

Please tell us what the result is and what problems you want to solve with this. This is a new treatment.

Wibbles

I saw the reference to self referral to CBD therapy and thought - "CBD oil" but NO - its "Cognitive Behaviour Therapy" !!

Dendoo

lol x

Vogue

Motzart

Feel for you all. I have RA it took 2 years to sort out my meds to help me. I need 2 knee replacements and am in pain everyday. My sister has had RA for over 30 years, has new knees, hips etc she had suffered dreadful pain but she has a great spirit and makes her self go out. I do find I am happy tucked up in bed watching tv, I do force myself to go out and mostly glad that I did. I understand though how much easier it would be just to stay in bed. But hey ho onwards and upwards.