i know i am in chronic pain and its getting me down after 3 years

hi My Name Is Mike and i live in oxford UK let me give you a little background on me. i am a 45 year old male and was diagnosed with spina bifida occulta when i was 16. and scoliosis..... i have suffered from back pain all my life but always managed it with small painkillers. 4 years ago i started getting bad and had to have an operation to trim back the nerves the operation involved inserting needles in to my spin where the problem was and sending an electrical charge to burn them away. that worked great for about 4 months then the pain came back.

the problem in in my L4 and L5 area a few months later i had a MRI scan to show h had an herniated disk pressing on my nerves. so i was out in for a discectomy in the L4 and L5 Area. i woke up and was numb in my penis area the specialist said it would come back fine. after 2 years on morphine and fentanyl. the numbness got worse and now i have to catheterise my self 3 times a day. as the doctor says i got some nerve damage from the operation and after 3 years he don't think it will come back so i to deal with it for the rest of my life. i was also walking with the aid of crutches as of 2 months ago.

so there is my background

now my wife diane is diabetic and my main carerer, 2 months ago she needed the ambulance due to her sugars being way to low and passing out. i had to put her in to the recovery position. i felt somthing to pop and the pain was really bad.

i now can not put my right leg down or even lift it without extreme pain. my painkillers at the moment are

300mg gabapentin twice a day

100 mg tramadol 4 times a day

2x paracetamol 4 times a day

Nortriptyline 50 mg at night

after dealing with this and going to the docs to explain how bad it is and not really getting anywhere

i admitted my self to A and E at out local Hospital

explaining i can not walk at all due to the pain and even lying down any movement is making it really painful. the pain is all down my right leg and it will not allow me to put it down at all and even putting my left leg down is causing pain in my back in the L4&L5 Area

so i had an Xray ANd An MRI scan (which was very painful having to lie in that position for 15 mins). they had me on oramorph 15 ml 4 times a day and Diazepam 50 mg in the hospital. i was very sleepy but still could move in the hospital bed.

after the docs looked at the MRI scan. sh came back and said they can not find any evidence of any nerve compression and damage......... WHAT THE HELL????????

there is no way on this earth there is nothing wrong in there... for those who have dealt with this pain people can tell the difference between nerve pain and muscle pain and mine is nerve pain sciatic on my right side

i did manages to get out of the hospital bed of which i had been lay in for more than 24 hours. i stood up using my crutchess and within 5 mins of trying to walk around i got the almighty shock of pain again in my right hand side. i was on the floor in the hospital ward.

i said to them how the hell can you say there is nothing wrong in there when this is happening.

but they just let me go home as the doctor could not find anything.

i am now at home in my recliner chain writing this and just asking.

CAN ANY ONE PLEASE HELP

i am at my wits end.

my wife has to do everything for me and she is exhausted. i feel so crappy that i have to rely on her

i am now on oramorph and diazepam and pregabalin... and the pain is still coming through

7 Replies

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  • Having scan in the recumbent position does not always show the compression. There are places that have scanners that allow views of flex ion and extension . These can show compression whist you are upright. You would probably need to get this done privately.

    Not sure how you manage to function on those meds! It's enough to knock out a horse.

    I wish I could give you a fix to you problem because then I would not be in pain either.

  • Hi there. What a dreadful ordeal you have been through, and then to be discharged by Drs when there is clearly something wrong, I find this shocking. You MUST insist on a scan in a different position, as your sciatic pain is so severe. I too am on pregabalin, and over the last two months the sciatica has been "creeping" back, to a point where I am returning to the GP to change my dose. You don't mention what dose you are on, but my Neuro Consultant told me that Pregabalin can be slowly upped to fine tune its effect. Maybe you could try this? Also, I wondered if you had tried acupuncture, as I found this very helpful too (you need to have it regularly). A referral to a Pain Clinic (I am still waiting for mine after 10 months! ) May help too. If you get nowhere with your requests for treatment I would contact PALS to discuss your options. I hope you receive the treatment you need as quickly as possible, and find ways to live with your pain. Good luck. X

  • I wish I could offer some help but the medical profession seem to struggle dealing with chronic pain .I really hope things improve for you and you can get some quality of life for you and your wife.

  • I am so sorry that you are going through this, your situation sounds really awful. If you can't afford to get another MRI (in different position?) privately, then you could ask your GP to be referred to another consultant. Or if the MRI was GP referral, then see another GP? Or if GP can refer to a pain consultant, then perhaps they can organise another scan for you. Definitely you should see a pain consultant. Some of them can refer to you electro-acupuncture and also possibly try out some different meds. Definitely try to go up on the pregabalin in the short term (that is, if you're not still on the gabapentin?) If oramorph isn't enough for you, what about going back on the fentanyl?

    In terms of help at home, you can ask your council for help – they can come for an assessment and perhaps get you some help at home, to give your wife a break. They also should have a meal delivery system, where you can get subsidized hot meals delivered for how often you need it (again to give your partner a break).

    Is there a position you can be in that doesn't hurt? You said lying down hurts – does this mean you aren't getting much sleep?

    My experience of nerve pain (once from a bad operation and once from a second herniated disc) is that is does eventually lessen. It might be a month or a year or two, but it does usually calm down... eventually. Though this doesn't help when you are in constant pain now! Please keep asking your GP for help, and demanding help if they aren't forthcoming. Also request home visits if it is difficult for you to travel or sit in a waiting room.

    I wish you the best of luck and hope that your pain lessens soon.

    - Kat

  • Have you had EMG studies of your legs? Useful to assess long nerve function in the absence of sciatic nerve compression. Have drs considered small nerve damage (i.e. sensory nerves) you mention numb genital area. Can you access a high profile pain clinic? Leeds? Manchester? Liverpool Walton Centre? Sorry I'm northern so only got northern suggestions. You need a good pain overhaul with someone capable of listening.

  • So Sorry Sweetheart!!! You have really been through it and your wife too. I'd get my records and take them where it showed the disk and say okay now what.... as I can't live like this. Or find another doctor, hopefully one with understanding and compassion. I pray you find some doctor to pick up the ball to help you!!!! xxx Mitzi

  • I know how you feel! I had an MRI and they could see nothing. But I'm in awful lower back pain. The best drug I have tried is subutex 2mg. It lasts for ages! It works in another way to normal opioids. I also take it with 100mg tramdol. Ask about it. I think it will help.

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