How to cope with chronic sciatica pain and adjustment to life

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This topic contains 6 replies, has 4 voices, and was last updated by  Amie 2 weeks, 6 days ago.

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  • #47333

    Amie
    Participant

    3 years ago after previously having sciatica which went away it returned. L5s1 disc protrusion. I have had a nerve block 2 years ago which numbed the pain but didn’t fully get rid of it. I see a private physio every 3 weeks and recently had an cadual epidural which didn’t work. Bought every gadget, do every exercise given by physio. Over the past 12 months the pain has been getting worse and managed through naproxen and physio. My physio suggested a fusion because it doesn’t take much for me to.go out of alignment. Also the hospital physio recommended I see the consultant as it had been going on for too long now and affecting my quality of life and suggested surgery.

    I work full time but have been struggling to do a full week since last injection in July and now use my leave to work 4 days a week. I spoke with the consultant who said he doesnt think surgery will help my situation at all and would like me to try some more medication. He said there is too much of a space so not impacting nerve too much. He thinks its shrunk back a bit. Last time 2 years ago he said if no improvement would consider shaving the disc. But why so much pain.  I recently came off amatrytline after 3 months of side effects, so was told my doc to come off them and they didnt really help. So next step is to try gabapentin or pregablin. He doesn’t want to consider anymore injections either yet.

    After battling this for 3 years and trying to remain positive I am now really struggling. I have no life outside of work, lost friends, don’t go away on holiday etc, plan my entire day from start to finish and usually put on a brave face until I go home. My marriage is suffering as a result, and I am now considering reducing my hours at work. I have adjusted my life and have tried and managed to take pleasure in the simple things, meals out and going for walks when I can.

    I think the consultant dismissing my pain has knocked me, not that I wanted surgery nobody does! But had come around to the idea.

    I can’t sleep again tonite, got bad spasms and feel constantly worried about my future. At 46 feeling pretty low.

    Just wonder how everyone copes with chronic pain and accepting that this may be your life now.

    #47335

    Joyce
    Participant

    Morning you sound very down and I know your pain as have suffered for about 6 years from lower back pain and terrible sciatica. I’ve had 2 caudal epidural’s and tried cocodamol, gabapentin etc etc all fairly useless. I was referred to a spinal surgeon about 9 months ago and MRI confirmed severe spinal stenosis at 4/5. I’m 65 and he wants me to have decompression and fusion using titanium cage and pedicular screws. I have had pre assessment and am booked for surgery after Christmas. However 5 hours of surgery 3 months of recovery and only 60% improvement worries me greatly. I currently take naproxen and paracetamol which seem to work just as well as all the other drugs. All this said, I would suggest you get a second opinion and as you’re quite young surgery could be good for you as age makes a big difference apparently. I’m sure there is something that can be done to help your pain in a surgical level. I’m still very undecided whether too go ahead with surgery but if I leave it much longer he won’t do the surgery. Bottom line is this can you live with your pain for the rest of your life if not be persistent and get a second opinion. Good luck

    #47340

    Amie
    Participant

    Hi Joyce,

    Thank you for your response and your kind words. Some days are better than others. Yes once I stop feel sorry for myself I will take charge of the situation, just not in that place at the moment. I am sorry to hear your news. It must be a really tricky decision to make to have that level of surgery. I really do feel for you.
    You almost feel like if they said 100% success rate you wouldn’t hesitate but what I am finding with this condition is that there are no guarantees and everything is trial and error. I really hope whatever decision you make is the right one for you and wishing you all the best.

    #47341

    Lc
    Participant

    Hi Amie, I understand where your coming from,I have lived with constant pain for about 23 years now after fractured /dislocated pelvis and 2 spinal ops in the same year now with degenerative chronic persistent pain, nerve damage/pain and arthritis and also SI Joint problems.Have exhausted physio, pain management ect, what I have noticed over the years is that most nerve drugs and pain killers will only take the edge off the pain to make it more manageable and nerve ablations and other sorts of injections are either very short lived or dont work. Also living in pain at some point will end with you being very low and depressed which will make you think differently, effect relationships which sometimes end up with a split. it effects all aspects of your life, pain management course I found somewhat helpful and they have got better over the years, and find a good pain clinic which will help with the drug side of things also I have done counselling ,CBT 1-1 and mindfulness for which the latter 2 pulled me out of that deep black hole. I cannot work, which at first is difficult but once you adjust and get the benefits and help you need it will become easier over time, you are on the right track by the sound of what you have said , and yes to have spinal surgery is a 50/50 chance, the first op on spine I had, seemed to work the problem i had is I went back to work to early and then collapsed which resulted in the second op, in same year.that’s when all my troubles began. Every one is different and has different methods of coping with pain ect , so my advice is to think about what exactly is most important to yourself , lots of money through working or your health and mental well being?and enjoying the little things in life of what you can do/manage. get yourself to a pain clinic and find out which meds and alternative therapy work for you best so you can manage and get ahead of your mental well being, through CBT and mindfulness and to keep doing gentle exercising which does help like yoga or something along those lines , personally I swim. and do some sort of hobby, that makes you happy and you enjoy doing as and when you can, by pacing your daily activities..also keep talking to like minded people that have an understanding of what your going through like the people on this site. which for me was really helpful as people say they understand but unless they are in a similar position as yourself like all the people on this site, they wont have a clue what your going through. it is about finding total acceptance of this is how you are and your physical self has changed and cannot do the things you once did,and changing your mindset to deal and cope with it all. it is and can be a long difficult road, to go down, but once you have and totally accepted yourself to this is how its all going to be now,you will have got rid of a lot of baggage and will feel lighter in yourself and be more happy and life will become easier despite living in pain.along with the meds and alternative methods to help. Take care and I wish you well best wishes, Lee

    #47342

    Helen H
    Participant

    Hi Amie
    it is really hard to get a balance between the routines and medications that you need to function ( not to mention working), and having some sense of living your life and finding some new things to look forward to.

    Like Lee, I find doing artwork and crafts, and Mindfulness have really helped me. I have been in constant pain for the last 6 years, have ME and can’t work. I have lost friends, work and independence, but I do find contentment a lot of the time….but that comes and goes, and is my life’s work now I guess. It is a grieving process with all the anger/denial/sorrow etc as with the loss of a person.

    I totally relate to feeling pain consultants not taking my suffering seriously. It is so hard when you want that elusive pill/exercise/treatment that will turn back the clock. It is really frustrating and it takes a long time to begin to accept the ‘new normal’ and there are many changes that happen along the way. Two things I would prioritise: something for you that isn’t work, and some designated time with your husband.

    My husband is not only my carer, but lives with chronic pain himself, so it is very hard for us to plan to do stuff. This new situation is new to him too, and it is so important that you keep communicating with him, and spending time together- even if just watching 30 mins of a movie you like or sitting in the garden.

    This situation is really stressful on your mental health, and that of your partner and you need to work together as a team. We take time at the end of every month to review the month- we often start with practical stuff, but it often opens up the conversation to how we are coping, and how differently we have felt. It really helps us so much to stay connected.

    For me, one of the hardest aspect of living with pain is the stress and anxiety it causes. I now prioritise my mental health above all else. On a day when the pain is horrendous, and I can’t do anything to change that, I CAN help my mental health, by meditating and doing creative stuff that I know keeps me on an even keel.

    BTW: If you can tolerate a low dose of Amitriptyline, it really does help with sleep ( it can get you to sleep when you’re in rotten pain), and that can make the whole day more manageable.

    Best Wishes
    Helen

    #47354

    Amie
    Participant

    Thanks Lee for taking the time to respond. It really does help me focus on what I need to do next and it’s good to know their is so much support. I used to do mindfulness meditation so think I will try that. And always wanted to try swimming so I am going to try. It is hard and I think I am in denial for my old life. The one where I used to go the gym, have holidays and see my friends. But now I need to more forward and thank you for all your advice its means a lot.

    #47355

    Amie
    Participant

    Thanks Helen, I really appreciate you taking the time to listen to ny story and the advice you have given.
    I am really pleased you have found some coping strategies that help.
    You sound so strong in your marriage and I admire how you are both working together. I feel like I need to start accepting the new normal who ever that might look and take control of this situation as best as I can. Thank you again.

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