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Chronic Pain, Lack of support, and fear for the future

Hi to all....

ive been lurking in the background for quiet a while, but tonight things are just getting on top of me and I feel the need to just let it all out... so apologies that im just gonna vent here....hope that's ok

Just to outline history, been suffering from lower back pain since age of 18, with left sided sciatica. In December 2008,at age 25 a disc herniated resulting in cauda equine syndrome, and was operated on in Feb 09. Delay due to mri waiting list and reporting back on results. To cut a long story short, I recovered fairly well with little side effects, a few flare ups here and there but nothing to get too panicky about.

Anyhow, basically I had a bit of a relapse of symptoms in August of last year, now aged 31, which have not let up. MRI's basically don't explain the pain, usual facet hypertrophy, narrowing of foramina, but nothing to explain why I have a severe pain down the left leg yet again. My gp prescribed muscle relaxants, anti inflamatories and pain killers, and I was hopeful to return to work but work gp wouldn't allow return as I wasn't fit. Anyhow that is where I am stuck. Things have not improved to any extent. I have undergone treatment with no success. Had epidurals, Facet joint blocks, Radiofrequency of the L5, S1 nerve twice - which only seemed to make things worse. So here I am, almost 10 months later...feeling useless... unable to walk straight, in constant pain when sitting, and pins and needles, back spasms etc. My pain management consult is now scheduling me in for a Racz procedure for scar tissue -- but my mri shows minimal scar tissue??? he says I have nothing to lose...and he will try and free up the nerve and make a bit of room. and that if this doesn't work, then he will refer me further to consider spinal cord stimulation. he is saying it is neorupathy but is this normal a few years after cauda equina? and why now have I got this pain? Im just so frustrated... :0(

Im on lyrica, targin and vimovo...and still every day is a struggle. I feel like somedays it must be all in my head when nothing of significance showed up on the mri. Latest MRI was last month so its not as if they are outdated. I was able to drive up until last Jan when I had the second round of radiofrequencey. since then I have struggled with clutching and siting in the car so im pretty housebound and im cracking up. My husband has been out of work, so thankfully in a way he was here to take me to appointments etc, but has recently gotten a few weeks work and this is where things have really been strained. I cant seem to drive myself anywhere and have to ask for help when I need to get to appointments. This should really only be a little thing but its turning out to be a nightmare. I had to ring my parents earlier to ask If they could drop me to a company dr next week and the silence when I asked just said everything. I have no support network when it comes to needing to get to places.... and when I say places, its not like I want to go out for a social outing, its drs appointments etc. My husband is fantastic, but he is working for now and cant take time off as its only for a few weeks.

I just feel trapped... and so alone. my brothers and sisters don't text, call or keep in touch due to an old falling out. so all I have are my parents and my husband as his family are so far away. To my parents, I feel like im an inconvenience that they could do without as they really don't like to be put out of their routine!!! I don't know anymore.... the prospect of possibley having to get a spinal cord stimulator --- and knowing that I will have little support afterwards is terrifying...I don't know what to do. My consultants response to im not able to drive is to get an automatic car... but we don't have the funds. I just feel trapped.. and scared of whats to come... how I will get there... cope and get through the other side. Sorry I know im rambling... I just needed to vent... im just a bit lost at the moment, and don't know whom I can rely on.... and its a scary place. I just want normality, and to get back to work. work was a big part of my identity and I feel like a failure that I haven't even been able to get back to work and its 10 months later.. :0(

just wondering if anyone has been in a similar situation to where I am? or has undergone the racz procedure and it has worked or not? or have any comments on the spinal cord stimulator for neuropathy?

sorry its such a long post..... just needed to try and clear the head .... and vent....

thank you all for reading... and also for all your posting which has helped me so much over the past few weeks

x x x
Katie
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1

Comments

  • katie i have simlar problem and cant accept that i have to live with the cronic pain i have i have had 3 surgeris and spinal cord stim i have ref for pain pump trial 8 pain docters in buffalo ny were i live will not give me triaL as all have told me it doesnt work now i had to agree to shots which now are epidurls with fancy name in front of them i have been on high does of pain meds since jan 2006 i am 53 yrs old now my pain in low back and hip just keep getting worse no docter here wants to take care of a cronic pain paticent who cant get better we have a law called i stop were docter checks a comptur to see all ur meds ny state moniers every script then they have a panel that determs if u are on to much meds and warns docter he is giving to much meds then docter tells you they cant treat you and you have to find new dodter even if you dont break narcotic contract i stress about my future on top of cronic pain every day
    patrick j groff
  • many thanks for your reply Patrick....

    it is so frustrating! it looks like you have been through the wars also... and that the battle is still daily for you. 8 pain doctors??? and now back to shots? it sounds like the system over where you are is a pure joke... but I agree with you that no one wants to really take responcibility for the treatment of a chronic pain patient. is it that if we don't improve then they are seen as a failure as a consultant?

    sometimes I feel that the pain must be all in my head... and then I get a few jolts and realise that the pain is very much real!.. I have had my meds changed recently so am hoping that they will reduce the pain, and am waiting on this racz procedure. It just seems to be a whole waiting game... waiting to see if the epidurals work... waiting to see if radiofrequency works....now waiting on hospital appointment... and meanwhile life is passing by day by day. It is hard to stay upbeat and positive with so many worries going on in the head...and stressing about what the future holds....

    I really hope the shots work for you Patrick.... u mentioned u had spinal cord stim? did it not work? I try to start each day as a new sheet.... sometimes its just hard to erase the previous day / week. Heres hoping that things will improve for us and for everyone on here.... or at least if not... then we know that we have this space to lean on when the going gets tough.
    thanks for your reply....
    katie
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  • I am going to include several links that might help you guys to get started on our forums and help you understand the whole pain management process.........there are steps that need to be taken by the doctors in determining what treatment options may be available for our conditions.
    Welcome Message
    http://www.spine-health.com/forum/announcements/spine-health-announcements/welcome-message-resource

    Chronic Pain Treatment
    http://www.spine-health.com/forum/pain/chronic-pain/chronic-pain-treatment-step-step
    http://www.spine-health.com/forum/treatment/pain-medications/dos-and-donts-pain-management
    http://www.spine-health.com/forum/treatment/pain-medications/pm-your-first-visit-what-expect-what-ask
    http://www.spine-health.com/treatment/pain-management/pain-management-chronic-back-pain
    http://www.spine-health.com/forum/announcements/spine-health-announcements/blend

    http://www.spine-health.com/treatment/pain-management/treatment-options-neuropathic-pain
    http://www.spine-health.com/forum/treatment/pain-management/common-pain-management-procedures
    http://www.spine-health.com/conditions/chronic-pain/chronic-pain-coping-techniques-pain-management

    Injections:
    http://www.spine-health.com/treatment/injections/epidural-steroid-injection-pain-relief-success-rates

    http://www.spine-health.com/treatment/injections/epidural-steroid-injections-risks-and-side-effects
    http://www.spine-health.com/forum/treatment/spinal-injections/esi-101


    Medications
    http://www.spine-health.com/treatment/pain-medication/medications-back-pain-and-neck-pain
    http://www.spine-health.com/treatment/pain-medication/narcotic-pain-medications
    http://www.spine-health.com/treatment/pain-medication/nsaids-non-steroidal-anti-inflammatory-drugs

    SCS Links
    http://www.spine-health.com/forum/treatment/spinal-cord-stimulation/typical-questions-and-answers-spinal-cord-stimulation

    http://www.spine-health.com/forum/treatment/spinal-cord-stimulation/scs-trial-faqs

    http://www.spine-health.com/forum/treatment/spinal-cord-stimulation/spinal-cord-stimulation-faqs
  • Thank you so much Sandi for all this info....and I look forward to getting to know everybody on here over the next while!
    Katie
  • Thank you so much Sandi for all this info....and I look forward to getting to know everybody on here over the next while!
    Katie
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  • Cath111CCath111 Posts: 3,555
    edited 05/10/2014 - 5:44 AM
    Welcome to Spine-Health.

    I'm sorry to hear about all the problems you've been having. When I read your post yesterday, I meant to reply but forgot. Anyway, is there any way you can get some people in a church to help you? Or do you have some sort of Regional Transportation that comes and takes people who can't drive to their appointments? We have that here in Colorado. Someone in a handicap van comes to our street to pick up a lady that can't drive, and takes her to her PT appointments. Hopefully you have something similar.

    Many of us here understand your feeling of isolation. So many people that we're close to get tired of hearing about the pain we struggle with every day. I know my hubby is sick of talking about it, so we don't. It's not that he doesn't love me, it's just that it's been too long and too much has happened. It's his turn to complain about his ongoing knee problems. So now I'm in the position to hear about his aches and pains each day. EDITED

    Anyway, take care and I know you'll enjoy meeting all the people on this forum. They're very kind and thoughtful.
    Take care,
    Cathie



     
    Post edited by Sandi- the use of foul, obscene or vulgar language is NOT permitted on Spine Health.
    http://www.spine-health.com/forum/announcements/spine-health-announcements/forum-etiquette-language-it-offensive-or-not

  • Thanks Cathie for your kind reply and suggestions. I never even thought of church / regional transportation etc. its something I must look into as a back up. I guess its just so frustrating with so much family nearby, yet nobody willing to help out. My hubby is getting to the stage now also whereby he is sick of hearing about the pain levels etc so I try to keep going and keep things in..but I know he still loves me, for better for worse etc :0) I think I would feel better if something obvious was hanging out of my body to justify the pain... but when I look healthy.. then its hard for ppl to understand how u can be in pain! but such is life. I hope your hubby will be ok..and that its not a longterm complaint. At least he will have an understanding wife :0)

    thank you so much for taking the time to reply
    Katie
  • ZenbikerZZenbiker Posts: 13
    edited 05/08/2014 - 12:19 PM
    Katie: I've been where you are. I'm still there, but fighting back. Use your drugs as prescribed, make sure your docs understand all you concerns, and rest. seven years into my "journey", I still have to lie down 3 to 5 times a day. Weather will make your pain worse on some days. Stress will make your pain worse, so get rid of anything that causes you stress. Keep a journal, meditate, whatever helps, and yes, venting helps. Anyone who criticizes you for it needs to be excused from your life for the duration. I ask people who don't or won't understand my condition if they would let me screw a 3" screw into the back of their neck in the back. "No!" they say, ""That's brutal to even say!". I narrow my eyes, show them my crutch, get up in their face, and say "welcome to my world. Get it now?" Fight back. Vent. That's why we are here.

    .Exercise, even though it may seem to be a pitiful effort compared to your pre-pain state. Clear any exercises with your doctor first, but do them. Light excercise has helped me significantly. Stretching, Yoga, and especially TaiChi (especially tai chi) seems to help me. Another thing that has helped has been a TENS stimulator I got from Amazon. And yes, you may become a social outcast, mainly because you can't get out and are never sure from one day to the next how your are going to feel. Remember, you did not ask for this. You were living your life and it happened. Now live your life with it. Set a goal for yourself - you're young. Think about a career using computers - I was a dentist, now I'm studying 3D Computer Aided Design. Just because you can't work at a physical job doesn't mean you can't work.

    The last piece of advice I can give you is this - it's your pain; own it. Show everyone you're trying to make something of yourself despite a condition they can't even begin to fathom. They will come to admire you for it, and in the end, maybe even respect you.

    At the very least, know that you are not alone. The rules of this forum prevent me from stating facts I know about healthcare and how it has changed over the past 30 years. You are not as likely to find help where you are looking for it....vent, fight, scream if you have to, but don't give up.
    Zen

    Katie said:
    Hi to all....

    ive been lurking in the background for quiet a while, but tonight things are just getting on top of me and I feel the need to just let it all out... so apologies that im just gonna vent here....hope that's ok

    Just to outline history, been suffering from lower back pain since age of 18, with left sided sciatica. In December 2008,at age 25 a disc herniated resulting in cauda equine syndrome, and was operated on in Feb 09. Delay due to mri waiting list and reporting back on results. To cut a long story short, I recovered fairly well with little side effects, a few flare ups here and there but nothing to get too panicky about.

    Anyhow, basically I had a bit of a relapse of symptoms in August of last year, now aged 31, which have not let up. MRI's basically don't explain the pain, usual facet hypertrophy, narrowing of foramina, but nothing to explain why I have a severe pain down the left leg yet again. My gp prescribed muscle relaxants, anti inflamatories and pain killers, and I was hopeful to return to work but work gp wouldn't allow return as I wasn't fit. Anyhow that is where I am stuck. Things have not improved to any extent. I have undergone treatment with no success. Had epidurals, Facet joint blocks, Radiofrequency of the L5, S1 nerve twice - which only seemed to make things worse. So here I am, almost 10 months later...feeling useless... unable to walk straight, in constant pain when sitting, and pins and needles, back spasms etc. My pain management consult is now scheduling me in for a Racz procedure for scar tissue -- but my mri shows minimal scar tissue??? he says I have nothing to lose...and he will try and free up the nerve and make a bit of room. and that if this doesn't work, then he will refer me further to consider spinal cord stimulation. he is saying it is neorupathy but is this normal a few years after cauda equina? and why now have I got this pain? Im just so frustrated... :0(

    Im on lyrica, targin and vimovo...and still every day is a struggle. I feel like somedays it must be all in my head when nothing of significance showed up on the mri. Latest MRI was last month so its not as if they are outdated. I was able to drive up until last Jan when I had the second round of radiofrequencey. since then I have struggled with clutching and siting in the car so im pretty housebound and im cracking up. My husband has been out of work, so thankfully in a way he was here to take me to appointments etc, but has recently gotten a few weeks work and this is where things have really been strained. I cant seem to drive myself anywhere and have to ask for help when I need to get to appointments. This should really only be a little thing but its turning out to be a nightmare. I had to ring my parents earlier to ask If they could drop me to a company dr next week and the silence when I asked just said everything. I have no support network when it comes to needing to get to places.... and when I say places, its not like I want to go out for a social outing, its drs appointments etc. My husband is fantastic, but he is working for now and cant take time off as its only for a few weeks.

    I just feel trapped... and so alone. my brothers and sisters don't text, call or keep in touch due to an old falling out. so all I have are my parents and my husband as his family are so far away. To my parents, I feel like im an inconvenience that they could do without as they really don't like to be put out of their routine!!! I don't know anymore.... the prospect of possibley having to get a spinal cord stimulator --- and knowing that I will have little support afterwards is terrifying...I don't know what to do. My consultants response to im not able to drive is to get an automatic car... but we don't have the funds. I just feel trapped.. and scared of whats to come... how I will get there... cope and get through the other side. Sorry I know im rambling... I just needed to vent... im just a bit lost at the moment, and don't know whom I can rely on.... and its a scary place. I just want normality, and to get back to work. work was a big part of my identity and I feel like a failure that I haven't even been able to get back to work and its 10 months later.. :0(

    just wondering if anyone has been in a similar situation to where I am? or has undergone the racz procedure and it has worked or not? or have any comments on the spinal cord stimulator for neuropathy?

    sorry its such a long post..... just needed to try and clear the head .... and vent....

    thank you all for reading... and also for all your posting which has helped me so much over the past few weeks

    x x x
    Katie
    To get the best results from a spinal injury, a patient should listen to their doctor, and the doctor should listen 10 times as hard to the patient.
  • Thanks so much Zen for your reply..

    what can I say...I think I need to de-stress and try and find the inner calm that I once had...I seem to be stressing a lot lately..over work... consultant / dr / insurance dr .. one thing after another... so mayb I just need to take a chill pill...and begin to accept things as they are... and own it as u stated... and live my life with it. Accept that somedays I will be tired, and its ok to rest when I am...and look after me.

    I have been thinking of buying a tens unit just to see if it helps... at this stage I will try anything. im lucky in that my 'work' is office based so no heavy lifting... I just cant sit for very long at the moment but hopefully that will settle and I can get back to work and restore some sort of balance. What you say makes a lot of sense...sometimes I guess it takes other people to state it for it to sink in...and I thank you for that. I cant believe u used to be a dentist and are retraining in computer aided design..all I can say is that is totally amazing... and inspiring....and shows where there is a will, there is a way.

    I guess its a daily battle for now... and who knows for how long... but its great that this space is here... just so that one doesn't feel so isolated... I think my plan for the next while... is to set those goals... and try and focus on the positive and do everything I can to keep those goals in sight...

    thanks for listening, and sharing....
    Katie
  • My pain management clinic gave me a TENs unit & my insurance covered it. It's worth asking before paying out of pocket ;-)
    Osteoarthritis & DDD.
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