pain pain pain and more pain

can someone please provide any advice, have suffered with chronic back pain for 8 years, have done pain input programme, have done a cope course and have been on virtually all meds nothing works I am on slow release oxycodone 50mg am and pm but for quite a few weeks now I take a tablet in the morning the pain will ease a bit for couple of hours then come back with a vengeance so I am taking an extra tablet in between the 12 hours, I am not sleeping much I go bed maybe 3 am and sleep at 6 am then I waste half the day as to tired to get up. I have pain management tomorrow was thinking of asking them to put me on slow release fentaly patches especially as at end of November have 3 days in a row that I will be sitting for a few hours to attend my sons inquest who I lost last xmas. on a daily basis trying to cope with the pain in my back is bad enough then on top of that grieving for my son then also worrying how I am going to get through them 3 days with the pain

18 Replies

  • I'm sorry to hear you lost your son, and maybe your pain is caught up in the grieving process, both for your son and for yourself. Emotion can affect pain levels, and while you may not be thinking too much about the inquest on a day to day level, it will be running around in your subconscious. Your emotions for this will be out of kilter as inquests can cause different worries.

    With chronic pain, we go through a grieving process with exactly the same stages as with a death.

    Can I suggest a grievance counsellor, who is experienced in both assisting with the loss of a son in unusual circumstances and also one who can help you with the loss associated with your pain.

    When you reach acceptance in the grieving process, you will start to do things despite the pain, you'll find things to do that get you in the zone (usually reading, music listening or playing, arts and crafts, gardening etc) You will find ways to enjoy life despite the pain and despite the loss of your son.

    There's also relaxation via meditation or aromatherapy masage, mindfulness is a great technique but needs a bit of practice and a good teacher.

    A simple reward system works for some people too. Decide what tasks you need to do each day (a task for you could be getting up at 10 am instead of lunchtime, even if you haven't slept much, shopping, washing, dusting. Anything really that has to be done. Make a list and keep adding to it as things pop into your head. Then each day decide to do 2 or 3 or however msny you can manage. If something is too big to do in one go, like you might only manage to hoover for 10 mins at a time, break it down to the smaller units.

    Rewards can be anything that is not food or alcohol related. It might be reading a book or magazine, doing a jigsaw, starting a new hobby, or lying down listening to music, or working your way through a box set of tv programmes, stretching exercises, walking,. You decide how long for, 20 mins to an hour.

    So in a day you end up with things being done mixed in with things you like to do. It can help both in getting things done and you enjoying yourself. As you progress, you can change the activity reward ratio so your doing more activity and less reward.

    On the sitting for a long time, I suggest you start now and build up your sitting tolerance. Find what you are comfortable with and rotate with standing and walking for the same time. As you increase the sitting slowly decrease the walking and standing. Try a coxyx cushion, they tilt you slightly forward and take pressure off the coxyx and the spine. Let them know at the inquest that you have pain, and ideally you will be able to sit and stand during the inquest and walk in the breaks. So maybe get a seat that allows this at the back or side.

    There are loads of you tube videos with music that helps sleep. Find some you like and use them when you are awake at night. Even if you don't get to sleep, your body and mind will be relaxed which is as good as a sleep.

  • I am so sorry for your loss. I've been through the back pain issues myself, and I hated fentanyl. It made me feel very weird. That's just me, of course. Has surgery been discussed? I ended up having spinal surgery as a last resort and it has made all the difference in my quality of life. The pain from the surgery is not as bad as the pain you're probably in now. Maybe talk to your doctors about it. My thoughts are with you during this terrible time.

  • You are going through an awful time. I suspect all the trauma of your sons death will have made your pain worse . Stress is so bad for pain. A Tens machine might help with hours you have to sit in November. I works for me when I have to sit for more than half an hour.

    I hope the inquest is not too traumatic for you.


  • I agree with you on Tens Unit

  • Hi Sorry to hear about your loss and constant pain. I have been suffering from chronic back and hip pain for years. I have tramadol and high strength co codamol prescribed. Although I got some relief it did not take the pain away.I saw a physio on NHS who helped me to manage the pain. Then recently I hit a real low and have been suffering from aches, pains all over and some days could hardly move. I felt if I did not do something soon I would be only good for sitting in my armchair all day.

    I have recently lost my job through ill health and was able to claim my works pension. So I decided to use some of this money to see an osteopath. Something that I felt I could not really afford but lucky enough to have some money spare.

    Anyway it was found my hip was out of line and also around the bottom of my spine plus a few other things. I am 80%. The pain is real but he has helped me understand the link of chronic pain, stress and the brain and he is helping me turn things around and I am having more "good" days than bad.

    I am a type 1 diabetic and have pins and needles in my feet, legs and now hands.

    This site is wonderful and I know you will get comfort and support from the replies.

    Hope your day goes ok for you

  • Hi,


    Welcome - I'm so sorry with your current predicament, we have all tackled with Pain on our long journey to the:

    "Promised Land"

    " Reduction in PAIN"

    I have been tackiling my "Chronic Pain" for 10yrs now so I'm a bit off an old timer now !!!!!!

    Please let me know if I can help you further.


  • hi it would be really good if I could take that offer of help as I am just about coping with everyday life. the pain is what gets to me at present and worrying about things that I got coming up also. I can spend up to several times in the shower. so have decided to ask council to put bath back in. write more later

  • Hi.

    "That's Great"

    That's a good idea with the bath as you will be able have a good soak.

    Do you find the shower helpful ??

    What meds are you currently taking for your pain ??

    What makes your pain worse ??

    Here are some examples:

    1. Emotion.

    2: Physical.

    3. Mental.

    4. Pressure (Work & Home)

    I can pick two that effect/increase my pain levels.

    No2. & No3.

    No2. Physical: I have identified my right leg as the main cause off my increasing pain.

    I already know the leg a Big Problem.

    I need to keep off my right leg as much as I can

    This will make Big Help.

    No3 This one is Very Difficult Indeed.

    I have found that staying in my bedroom on my own makes another (Good Help)

    Keeping away from "Conflict/Stress . Also helps "Big Time "

    Having identified two of the causes I can now make a plan on the best way forward.

    That is a rough idea on the best way forward.


  • I think all four at the moment, for the last couple of days my right side as been so sensitive to touch and is really sore.

    I didn't mane to get to pain management yesterday so had to reschedule for 26th, I don't think the meds are helping so am hoping if they change what I,m on maybe it will help with the pain and I can cope better and try to be in control of pain then it controlling me.

    I have so much going on I have my sons inquest coming up as I previously mentioned over 3 days, I am having to apply for Pip to replace dla, so low on money, having to sort out headstone with family for my son, then his anniversary on the 20th and then have xmas coming up...... there I have stuff going on with my 20 year old wanting to move out with grandson which I understand as she wants her own place but then the boyfriend is ..... so all this is not helping my pain.

    I do take myself off to my bedroom sometimes just to take some time out and to try to settle the pain..

    I know what I need to do and its trying to set myself small goals to do each day. I need to get back into my crafts.

    I am also trying to get some voluntary work sorted.

    I did try to start up a face to face support group it would be nice just to have someone other then family to talk too

  • Thankyou all so much for replying, I am trying to learn about acupressure points, to help with the pain and also am doing a reiki and reflexology course from home. I will look into the mindfulness. but I know I need to also have my meds looked at as cant carry on ramming the amount of morphine down my thoart... me going to pain management today is a big deal as it means leaving the house which haven't done much. but will defo try to take small steps.. everyday life gets in the way at times as at present have to do a pip claim as dla stopped have the inquest, worrying about an headstone for sons grave. was thinking of doing some sort of fund raiser to help towards the headstone well I let you know what happens at pain management

  • So sorry for your loss Shazey. I cannot imagine what you are going through xx

    I have suffered intense almost constant pain for the last year and the one thing that has really helped me is slow release Tapentadol. It is a very controlled (and expensive apparently) drug and I only found out about it through other fibromyalgia pain sufferers. The normal release tablets helped but since going on the slow release Tramadol I have had 5 pain free nights in a row!! And before then it must have been a year since I had just 1!! They are also managing the day pain well too!

    I was already on max gabapentine, fluoxetine and Tramadol and Oramorph. Have just come off the Tramadol and decreased Oramorph. Still early days yet but so far it's been fab!! Hope this helps xx

  • after being in hospital for 11 days I am now on tapentaldol and the weaning me off oxycontin have to take paracetamol plus amitriplyne

  • Oh poor you, it sounds really painful. You should be getting more help. I had a spinal epidural and it has really helped. Gabapentin and Baclofen help too. I am now able to sleep at night which is brilliant. You really need to sort your back out to enable you to grieve.

    Hope the inquest is not too traumatic for you as I am sure the stress makes the pain worse.

    Good luck!

  • I am so sorry for the loss of your son. There doesn't seem to be anything worse! I have experienced that time release doesn't seem to work as much as every 4-6 hours. I pray that you know Christ who can give you peace as no one else can.

  • I had constant lower back and pelvic pain,severe enough to be hospitalised for pain control.I have severe M.E and profound fibro. Was put on the fentanyl patch and it has been a godsend.I no longer writhe in desperation for hours on end.I still need tramadol 100 mg 4 x daily and i also take lyrica 300 twice a day.It was a turning point for me in 15 years of hell.I was told i will never get off it and i dont care,my pain was horrific ,if they find a cure for my illnesses ,i will deal with fentanyl withdrawal as and when deemed neccessary.I started on a low dose and have been on 50 mcg every 72 hours now for 18 months.I feel worse pain the night before i change my patch ,but my docs have told me that i metabolise opiates quickly.Even with 1 bad night in 3 i have a much better quality of life painwise.Hope this helps.Oh ive also been t total , non smoker and never taken any type of drug my whole life so that maybe allayed any fears re abuse ,or addictive tendenceies with this medication.Good luck

  • i think i will definitely try the patch as the oxycodone is not having the effect it should anymore

  • Hi Shazey,

    Sorry to hear about your back pain, I know how it is as I damaged my back back in the summer of 76 and since then it has slowly got worse as time has passed I have tried just about anything the doctors were willing to try and the only thing that helped me was when I asked the surgeon could it all be in my head as they could not find anything that was causing it he surgested I had a procedure called MUA (Manipulation under Anaesthetic) where they give you a general anaesthetic and then move you around to see if you react to the movement as if you react there is definitely something causing the problem even if they do not know what the cause is, the following morning after I had it done the surgeon came into the ward and straight away I saw he had a very large black eye when I asked how he did it he told me that I did it to him he said they twisted me one way and I jumped back then they tried to turn me the opposite way and my leg lashed out and I hit him in the eye he added that this is the only time in my army career that I will get away with knocking out a Colonel

  • Tens unit has saved me when sciatica grabs me . You can order online for around $50 or less. Google Tens unit and you will find all places you can order from . Helps Fibro pain too if you place patches on or near a trigger point .

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