Suicide

I had reactive arthritis I am hlb27 positive

I have had this for 3 years

I have been on stable meds for 2 years

my blood work comes back ok

but iam in constant pain

the only time it doesn't hurt is when I am asleep which is not all ways easy for me to fall asleep

I have been on morphine and after that fentanyl patch's also on loads of nerve blockers

I tried to kill myself jan 31of this year

I am with the pain clinic after 3 years

not really any better

I can move and am mobile burning constant pain that some days can be like flu like symptoms

and other days it can be very extreme pain every where the only bit that doesn't hurt is my face

I do not want to die but sometimes it feels like the only answer

as I can not see it ever getting any better

I hate who I am now I hate my new limits

I can stand how dr tell me that iam ok and refuse to listen i am not ok the level pain is not ok and i am only just hanging on for loved ones

i have an appointment at rheumatology

on the 22 March but they will just tell how well I am doing I may just cancel that maybe they can help someone else as I am not getting any better

«1

Comments

  • Lorraine_24
    Lorraine_24 Member Posts: 34

    @Terryb852 please reach out and speak to someone, phone help line, I know what you are going through, my son has reactive arthritis since last June, I myself have severe osteoarthritis in most my joints and live with chronic pain daily, it does most definitely effect our moods and I have felt the desperation you are feeling. Please please talk to someone it will help I've been there

    Lorraine

  • Terryb852
    Terryb852 Member Posts: 18

    I have many times been to nhs mental health Chris's team 3 times

    I pay for private physicolgy

    weekly but to be honest non of changes anything

    thank you for the message

    it helps to know I am not on my own

    I don't want others to suffer like me

    thank you

  • Lorraine_24
    Lorraine_24 Member Posts: 34

    @Terryb852 your definitely not on your own , have you called versus arthritis helpline? Definitely worth a try , I wish there was a specific group for reactive arthritis sufferers as I know from my sons experience how difficult it is and how challenging life is on a daily basis and the condition seems to be over looked and not much know about it, I hope and pray you can find some way forward to battle on and be in a better place mentally and physically

  • Terryb852
    Terryb852 Member Posts: 18

    I have never tried the vs arthritis help line would be worth a go

    I spoke to must the mental health ones

    they all say because it pain related once the pain goes I will be ok but the pain will never go

    reactive arthritis is down played because you can just have it for a short period

    the information available is frustrating

    saying it will clear up in two weeks

    I really wish there was better support available

    i am sorry to hear about your son that is not fair I hope he is not effected two badly

  • Skinny Keef
    Skinny Keef Member Posts: 1,138

    I have been in exactly your position with pain. I can no longer remember what it’s like NOT to have pain. It has taken away most of the things I liked doing and I now spend all my time at home doing my music in short bursts of an hour or so where as before it would be non stop.

    I too would have ended my life several times if it had not been for my 3 yo son needing a dad and the support of my wife. In fact there was a day that an I love you text came from my wife just in time.

    so although it may not be much help, you are not alone. Try and stay positive. Go to your appointment. You may very well see a different doc who will listen and attack your pain with a different approach. Never give up hope. Death is very final and lasts a long time.

  • Terryb852
    Terryb852 Member Posts: 18

    Thank you i am sorry you had to go though the same as me

    it gives me some hope that maybe things could get better

  • Naomi33
    Naomi33 Moderator Posts: 416

    Morning @Terryb852

    I hope you are feeling a little more positive today and the advice from others members has helped.

    I have attached helpline information for you if needed.

    You are not alone so keep posting your concerns.

    Best wishes @Naomi33

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Terryb852
    Terryb852 Member Posts: 18

    Thank you i am in same amount of pain today but doing better mentally

  • @Terryb852 hi.

    First thing to mention you are not alone. I have been struggling with reactive arthritis since 2020 and like you I get the total B/s " it self resolves in 3 months so don't worry".

    Don't worry ! I'm in agony, I've lost my career and almost lost my house! All whilst being housebound in the worsed pain I have ever experienced

    The ignorance around this condition is mind blowing.

    I understand why you think of ending your life, the pain, the worry the anger and frustration of not be listened to you drives you to that point.

    If you have RA or PsA at least you are believed, but ReA is just fobbed off. I even had a nurse laugh in my face when I told her my difficulties as she didn't "belive it was that bad"


    May I ask what medication you are taking?

  • @Terryb852 how are you?

  • Terryb852
    Terryb852 Member Posts: 18

    Amitriptyline 25mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Amitriptyline 50mg tablets

    ONE ONCE AT NIGHT ‐ 7 tablet

    Calci-D 1000mg/1,000unit chewable tablets (Forum Health Products Ltd)

    TAKE ONE DAILY ‐ 7 tablet

    Etoricoxib 60mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Leflunomide 10mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Pregabalin 75mg capsules

    One To Be Taken Twice A Day ‐ 14 capsule

    Sumatriptan 50mg tablets

    Take One Tablet For Migraine Attack. If Symptoms Come Back, Take One Tablet At Least Two Hours After First Dose. ‐ 6 tablet

    I am also on Imraldi 40 mg injection every two weeks


    i I am doing a lot better now

    when the pain is bad I always end mentally

    in really bad place I have private psychologist

    that is helping a lot

    I am in remission as the medication is working I just can't believe the amount of pain I have to put up with

    I was on morphine then fentanyl patches

    trying to carry on it just broke me over and over again

    I hope I never end up in place again

    and I am sorry for any one else how ever ends up there when your daily life is so hard because of the pain your in you feel you would be better of dead

    i can not thank you enough for all the support and messages

    and i will do the same to any one that needs it

    i am in much better place then i was a week

    ago and trying my hardest to never end up there again

    the high levels of pain in ever joint will come back i just need to be mentally strong enough to be ok and i am working on that

  • Terryb852
    Terryb852 Member Posts: 18

    Amitriptyline 25mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Amitriptyline 50mg tablets

    ONE ONCE AT NIGHT ‐ 7 tablet

    Calci-D 1000mg/1,000unit chewable tablets (Forum Health Products Ltd)

    TAKE ONE DAILY ‐ 7 tablet

    Etoricoxib 60mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Leflunomide 10mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Pregabalin 75mg capsules

    One To Be Taken Twice A Day ‐ 14 capsule

    Sumatriptan 50mg tablets

    Take One Tablet For Migraine Attack. If Symptoms Come Back, Take One Tablet At Least Two Hours After First Dose. ‐ 6 tablet

    I am also on Imraldi 40 mg injection every two weeks


    i I am doing a lot better now

    when the pain is bad I always end mentally

    in really bad place I have private psychologist

    that is helping a lot

    I am in remission as the medication is working I just can't believe the amount of pain I have to put up with

    I was on morphine then fentanyl patches

    trying to carry on it just broke me over and over again

    I hope I never end up in place again

    and I am sorry for any one else how ever ends up there when your daily life is so hard because of the pain your in you feel you would be better of dead

    i can not thank you enough for all the support and messages

    and i will do the same to any one that needs it

    i am in much better place then i was a week

    ago and trying my hardest to never end up there again

    the high levels of pain in ever joint will come back i just need to be mentally strong enough to be ok and i am working on that

  • Terryb852
    Terryb852 Member Posts: 18

    Amitriptyline 25mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Amitriptyline 50mg tablets

    ONE ONCE AT NIGHT ‐ 7 tablet

    Calci-D 1000mg/1,000unit chewable tablets (Forum Health Products Ltd)

    TAKE ONE DAILY ‐ 7 tablet

    Etoricoxib 60mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Leflunomide 10mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Pregabalin 75mg capsules

    One To Be Taken Twice A Day ‐ 14 capsule

    Sumatriptan 50mg tablets

    Take One Tablet For Migraine Attack. If Symptoms Come Back, Take One Tablet At Least Two Hours After First Dose. ‐ 6 tablet

    I am also on Imraldi 40 mg injection every two weeks


    i I am doing a lot better now

    when the pain is bad I always end mentally

    in really bad place I have private psychologist

    that is helping a lot

    I am in remission as the medication is working I just can't believe the amount of pain I have to put up with

    I was on morphine then fentanyl patches

    trying to carry on it just broke me over and over again

    I hope I never end up in place again

    and I am sorry for any one else how ever ends up there when your daily life is so hard because of the pain your in you feel you would be better of dead

    i can not thank you enough for all the support and messages

    and i will do the same to any one that needs it

    i am in much better place then i was a week

    ago and trying my hardest to never end up there again

    the high levels of pain in ever joint will come back i just need to be mentally strong enough to be ok and i am working on that

  • Terryb852
    Terryb852 Member Posts: 18

    I am doing much better the pain has eased off and i doing better mentally at moment

    i am trying to be mentally stronger i'm seeing a psychologist

    i used to be able to do about 3 weeks of 10 out 10 pain but after 3 years it has worn me down and my mind goes straight for this pain is forever and my life is like tourture

    thank you for all the support it really helped

    this my current medication


    Amitriptyline 25mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Amitriptyline 50mg tablets

    ONE ONCE AT NIGHT ‐ 7 tablet

    Calci-D 1000mg/1,000unit chewable tablets (Forum Health Products Ltd)

    TAKE ONE DAILY ‐ 7 tablet

    Etoricoxib 60mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Leflunomide 10mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Pregabalin 75mg capsules

    One To Be Taken Twice A Day ‐ 14 capsule

    Sumatriptan 50mg tablets

    Take One Tablet For Migraine Attack. If Symptoms Come Back, Take One Tablet At Least Two Hours After First Dose. ‐ 6 tablet

    i am also on Imraldi 40 mg injections every 2 weeks

    this is a weeks worth as i currently on limited meds due to me drinking a whole bottle of morphine while i had fentanyl patch's

    this how pain felt after 3 years


    i was in a bad place felt like i was in room on fire and i was on fire and there is only one door and means i would die but the pain would stop but i would have leave my family

    I am doing so much better now and if the pain gets bad again i will try deal with it better

    i hope that i can help others that end up in place where i have been many times

  • Terryb852
    Terryb852 Member Posts: 18

    I am doing much better the pain has eased off and i doing better mentally at moment

    i am trying to be mentally stronger i'm seeing a psychologist

    i used to be able to do about 3 weeks of 10 out 10 pain but after 3 years it has worn me down and my mind goes straight for this pain is forever and my life is like tourture

    thank you for all the support it really helped

    this my current medication


    Amitriptyline 25mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Amitriptyline 50mg tablets

    ONE ONCE AT NIGHT ‐ 7 tablet

    Calci-D 1000mg/1,000unit chewable tablets (Forum Health Products Ltd)

    TAKE ONE DAILY ‐ 7 tablet

    Etoricoxib 60mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Leflunomide 10mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Pregabalin 75mg capsules

    One To Be Taken Twice A Day ‐ 14 capsule

    Sumatriptan 50mg tablets

    Take One Tablet For Migraine Attack. If Symptoms Come Back, Take One Tablet At Least Two Hours After First Dose. ‐ 6 tablet

    i am also on Imraldi 40 mg injections every 2 weeks

    this is a weeks worth as i currently on limited meds due to me drinking a whole bottle of morphine while i had fentanyl patch's

    this how pain felt after 3 years


    i was in a bad place felt like i was in room on fire and i was on fire and there is only one door and means i would die but the pain would stop but i would have leave my family

    I am doing so much better now and if the pain gets bad again i will try deal with it better

    i hope that i can help others that end up in place where i have been many times

  • Terryb852
    Terryb852 Member Posts: 18

    I am doing much better the pain has eased off and i doing better mentally at moment

    i am trying to be mentally stronger i'm seeing a psychologist

    i used to be able to do about 3 weeks of 10 out 10 pain but after 3 years it has worn me down and my mind goes straight for this pain is forever and my life is like tourture

    thank you for all the support it really helped

    this my current medication


    Amitriptyline 25mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Amitriptyline 50mg tablets

    ONE ONCE AT NIGHT ‐ 7 tablet

    Calci-D 1000mg/1,000unit chewable tablets (Forum Health Products Ltd)

    TAKE ONE DAILY ‐ 7 tablet

    Etoricoxib 60mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Leflunomide 10mg tablets

    One To Be Taken Each Day ‐ 7 tablet

    Pregabalin 75mg capsules

    One To Be Taken Twice A Day ‐ 14 capsule

    Sumatriptan 50mg tablets

    Take One Tablet For Migraine Attack. If Symptoms Come Back, Take One Tablet At Least Two Hours After First Dose. ‐ 6 tablet

    i am also on Imraldi 40 mg injections every 2 weeks

    this is a weeks worth as i currently on limited meds due to me drinking a whole bottle of morphine while i had fentanyl patch's

    this how pain felt after 3 years


    i was in a bad place felt like i was in room on fire and i was on fire and there is only one door and means i would die but the pain would stop but i would have leave my family

    I am doing so much better now and if the pain gets bad again i will try deal with it better

    i hope that i can help others that end up in place where i have been many times

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,214

    Hi @Terryb852 good to hear that your pain has subsided a bit and you feel better. Hope it continues.

    Best wishes

    Peter

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • shacklock25
    shacklock25 Member Posts: 31

    Hi Terry. Good to hear you are feeling better. It gets you down doesn't it this arthritis business. I am currently waiting for a physio appointment. It is at least an eight weeks wait. I cannot walk unaided and need a stick (osteoarthritis of hip) but can stand unaided. Hope they can help so I can avoid surgery.

  • Terryb852
    Terryb852 Member Posts: 18

    Hope you get on ok at physio

    I found that if you go to nhs physio it's worth going to a private physio as my back was very bad for 3 years

    and I found one good physio and the pain is so much better now

  • Woofy
    Woofy Member Posts: 358

    Hi. I was diagnosed with RA two years ago. Like you I am in a lot of pain. I hate it, because I can’t get away from it. I have a hospital appointment next week, I take methotrexate, and paracetamol, but it isn’t really helping as yet. The mex could be increased as it’s not a high dose. I am really hoping they find something that will help. I’ll. be 66 in July, and I would be so happy to just wake up in less pain.

    I can’t say I’ve ever wanted to take my own life, but I have thought what is the point of it all, if I am just trying to get from one day to the next.

    I am miserable most of the time, and I really don’t want to be. I feel awful sometimes, when I know there are people out there worse off than I am. Please ask for help, tell your medical team how you are feeling. Always remember you are not alone, we all understand in our own way just what you are going through. Is the caravan your permanent home?

  • Woofy
    Woofy Member Posts: 358

    Keep strong. X

  • Splodge
    Splodge Member Posts: 14
    edited 15. Mar 2024, 10:39

    A private physio will give you massages and hints and tips on how to cope. Costs money - but if one can afford it it's a v v v v useful investment. The NHS will only give ya pills and jabs! Also, I'm eagerly awaiting the reopening of the Hydrotherapy Pool at my local hospital.🙏

  • Pheeny
    Pheeny Member Posts: 22

    Hi Terry,

    Hope things are better for you now. I have rheumatoid arthritis and thankfully my medication works for me. But there was a time when it didn’t, although your experience has been much much worse and longer than mine. But it did get me down and I thought it would never alter. Then I was put on a new treatment and everything changed. So I hope you will continue keeping your appointments, badgering for anything new that is going, and not giving up hope that there is something out there which will work and work well for you. New treatments and research are going on all the time so there is hope for the future of arthritis of all types. I think you should recognise how well you have coped. You are obviously a fighter and very resilient to have put up with so much for so long. I hope you continue to feel better and Good Luck with your next appointment. Will be thinking of you on the day. Pheeny

  • Terryb852
    Terryb852 Member Posts: 18

    I am doing much better now pain is still the same but I am mentally much better place

    thank you for what you sent as it really good to know as it could be better then I am now

    the my bloods are always clear so they tell me my meds are working

    but i am still in so much pain

    so far away from a normal life

  • Baloo
    Baloo Member Posts: 509

    @Terryb852 so good to hear you have a happy place here. I think we are all lucky, there are many thing that can lift us up, and is not just about the pain.