What is the longest you have gone without pain?

Jennet Member Posts: 13
edited 28. Nov 2023, 14:06 in Living with arthritis

My pain is constant and affects everything I try to do. The only time I'm not in pain somewhere is when I'm asleep. Even so, this doesn't last long because the pain wakes me a few times each and every night. I'm being tortured and nothing seems to help. I've ordered some equipment to do additional exercises, more than those the hospital and gp have told me to do. If this doesn't help then I don't know what I can do.

Has anyone got any recommendations?


  • anneb82
    anneb82 Member Posts: 317

    Hello @Jennet

    Welcome to the online community and thank you for sharing your experience with us.

    I understand that you are really suffering with your pain levels at the moment. The only time you are not in pain is when you are asleep, but even then, you are woken often. You feel like nothing helps and you have ordered some additional equipment in order to do more exercises than you have been advised by your GP and the hospital.

    Would you mind sharing what your condition is with us and how and where it can effect you, as this can help to further narrow down the help that we can give. I know from personal experience that chronic pain can really impact your day to day life and that we can be driven to desperate measures to experience some relief. Many of us on the forum will be able to empathise and understand how you are feeling.

    Ive included a couple of links to the main Versus Arthritis website that I think may be of use to to.

    I hope that these are of help to you. Please do continue to get involved on the forum and keep us updated. These is always someone around and we are always looking to make new friends.

    Take care

    Anne (Moderator)

  • Jennet
    Jennet Member Posts: 13

    Thanks anneb82.

    In 2013 my diagnosis was Osteoarthritis with multiple mechanical joint pain. I had acute pain everywhere. I was & still am incontinent, so couldn't do the recommended hydrotherapy. Soon after I needed a walking stick, then crutches. I was prescribed Liquid Morphine. Within a year I attended NHS group meetings which I loved, but it only lasted a few months. I moved and signed up to a new gp surgery. During the 8 years I attended that practice I was referred for help weekly, which myself and the other attendees realised was for people with mental health issues. We all left in week 3 & I was just crushed. Next I was diagnosed with Oedema and have had to wear these god awful stockings which hurt my hands every day.

    My pain became worse, lasted longer, flare ups became more frequent and lasted 1-2 weeks rather than the usual few days. As the pains continued I continued taking the Morphine & eventually ended up taking Cocodamol, then Gapapentin too. I asked as often as I could If I can be referred back to the pain clinic. I also asked to be referred back to Dermatology as I have a rare form of eczema that can kill me and these pains reminded me of a video I saw of a patient with the same eczema i have. No joy.

    After all those years of being refused referrals, the pain not going, sleeping all the time and physiotherapists request to give me Amytripteline to aid pain and allow me to sleep being denied I left. My new Gp booked me to see him one day. I'd had x-rays when I joined this new practice and what he told me put the fear if God in me. He said I only had arthritis in my hands and at the base of my spine. He said there was something else wrong with me and it could take up to 2 years to find the correct diagnosis. I couldn't stop crying for about 3 months. I was petrified.

    Since then I've had to wean myself off the Cocodamol as he thinks it's had a very damaging effect on my bowels, as I have Ibs & should never have been prescribed it. I've been referred to The Pain Clinic. My first instructions are to join the 'live well' website as well as 'Verses arthritis' which I'm a member of already. There are excercises and time management things in there because the clinic knows I struggle to look after myself.

    I know it will take a long time and there have been countless meetings and consultation between consultants, etc but the ongoing pain is just ridiculous. I just cannot believe nothing shows on the x-ray's I've had. I think I can cope with the diagnosis, but my fear is the prognosis if it's like this now.

  • Jennet
    Jennet Member Posts: 13

    Apologies anneb82,

    My pains include:

    Acute back pain throughout my spine up to the nape of my hair at the back of my head. I hear and feel like little stones crunching and moving around each other. My spine feels like it will snap. It's tight and feels like it's being forced inside my body. If I send I hear a click and feel something nice Inthe centre left of my spine. The stiffness and tightness has me bending over the kitchen counter, my trolley, my walking stick, etc.

    My left shoulder was broken 10 years ago by a faulty fire door that whacked me in my shoulder. As I have Hypermobility bit took month's for the go to refer me for an x-ray. My shoulder was broken in two and it was too late to operate. The surgeon refused to operate as the muscle, etc had grown in and around the break. This has left me unable to sleep on that side. That arm feels less 'alive' to me and is acutely painful on a daily basis. I have issues dressing, undressing, having a shower, cooking, etc. I was told the arm will just hang as eventually I will not be able to use it.

    I get acute pains in my hips. It feels like the ball is continually coming in and out if the socket. If I sit too long I feel intense pressure which is painful. My hips making clacking loud noises when these things happen. I find it very painful to lay on the right hip. It feels like my hip is on a large stone.

    I also get extremely intense pressure and pain in my knees. Both buck and grind and at times feel like water is running down my shins from my knees. My knees swell and I find it painful it sit normally. I have to push my legs forward as the bent position is too painful.

    My neck gets so sore with intense pressure and radiation of the pain. This gets hot to touch and usually lasts all day.

    The place where my bra rests at the back gets intense pain. The pain feels like it's deep inside my body. It stays there, always on the right initially, for around half the day then radiates to the front of my ribs for around an hour. It then comes back and spreads around the whole of my back. I'm just stuck wherever I am when this happens.

    The pains in my feet sound strange but it is what it is. I was told 25 years ago that I have 0% fat under my feet.. which doesn't help. My feet feel as if they're hanging off my shins via a nerve or slither of skin. I always look because it's painful and weird at the same time. Then every week at least once or twice my toes feel like they separate from the rest of my foot. It is excruciating and I have to get up, try to walk about, kick and bang my feet, stand on tip toes, force my toes into the carpet and twist my feet whilst grinding my toes in the carpet. When I feel my toes go back into the socket i cannot sit down. I have to stay standing for at least 10 minutes or walk around, otherwise my toes come out the socket again. It's horrendous and has happened in Asda, whilst I'm asleep, putting my rubbish outside, etc. I hate it so much.

    And Ibs, Oedema, Osteoarthritis in my hands and base of my spine. Carpel Tunnel Syndrome in both hands. Rare eczema - Perforated Collagenosis. Blepharitis in my eyes... apparently only uncomfortable but I'm telling you it is painful sometimes.

  • Mike1
    Mike1 Member Posts: 1,992

    What is being pain free? I can't remember!!

  • frogmorton
    frogmorton Member Posts: 29,487

    Oh @Jennet

    You poor thing! It all sounds really awful. How much have you got going on?

    I am so glad you changed GPs even if this new GP says it will take time to diagnose what is wrong at least he/she is prepared to take the time.

    The referral to the pain clinic is an excellent start too I am very pleased.

    You say you have hypermobility I am no expert but it sounds relevant to a lot of what to describe Sending you some ((())).

  • Lilymary
    Lilymary Member Posts: 1,742

    Crikey Jennet, that does sound tough going. Even with just one dodgy hip the pain is constant. I hope some of the suggestions in Anne’s post will help you.

    Just a thought. Sometimes exercise does more harm than good. I had to stop even very light exercise as whatever I did, even stretches, made my hip worse. Perhaps give that some thought? Review which ones work and which make you worse? you can’t exercise your way out of everything. Sending a gentle hug (())

  • Jennet
    Jennet Member Posts: 13

    It's never ending and torturous

  • Jona
    Jona Member Posts: 406

    Hi Jennet,

    Sorry to hear how you struggle, I’m a bit confused what dr said that there is something else but won’t know for 2 years? And why put you in a group with mental health when X-rays say it’s arthritis sounds like you’ve had as bad a service from them I’ve had, it’s very tiring dealing with pain all the time I would go back to your gp and ask him to explain or speak to the practice manager maybe he or she can explain it sounds like you need coping strategies too pills are not always the answer for me they cause more problems my tens machines do help me a lot but again they don’t always help some people go back to gp until you get the answers you need nurse practitioners are pretty good too

    take care

    love Jona 😊