Severe back pain and living a normal life

Bones, joints and muscles
1

Hi please read this. I know its a long one - I just need a bit of help/advice xxx

I am 39, 2 children at home and sick from work. Ive had back problems since I was 21, its gradually got worse - short story - had an MRI scan when I was about 34 told I had DDD but was told that this was normal and nothing would be done. Ive since moved area and the pain and symptoms have got much worse. From October until now I have increased my medication to 2 x 10mg of zomorph, 150mg of Venloflaxine (anxiety and depression) 2×300mg of gabapentin 3 times a day 1x500mg of naproxen twice a day, 2x30mg of dihydrocodeine 4 times a day, at bedtime 35mg of Amytriptaline at bedtime. I still have pain had an MRI scan and an xray. The xray showed osteoarthritis in L5/S1 and MRI scan showed a bulge with slight pressing on my nerves.

I've had a PIP assessment and have been awarded standard rate. Even though I cant walk very fast and I'm constantly in pain. But because I will do it and wont get people to always go for me this is deemed as me being able to do it!!!

I have been off work since April - i tried to stay in work as long as I could but the pain got too bad and i wasnt taking the dihydrocodeine as they make me drowsy and I had already started getting my words muddled - not great when you work in a call centre!!! I get sick pay of £320 a month.

Roday I had an appointment with the orthopaedic specialists and he was running over an hour behind - I was in there for 15 minutes. He asked me my age, if i lived in a house/bungalow, who i lived with, if i work and how long I've been off sick. He did the normal raise this push my hand etc... then said he wont operate and will see me in 3 months. I asked how i was in so much pain even with the medication - which makes me unable to run my household. He then asked what I was taking - surely this is all in my notes. So I told him and he said well the disc bulge is slightly different as you were lay down. He has said he will get in touch with the xray dept who will do a steriod injection. But this can take 8 weeks - Iknow I may sound really negative but i came away feeling like he never gave me the time to find out how i live etc..... i asked what I'm supposed to do about work etc but he said that he'd write a letter to my GP and I would get a copy. I said that I just wanted to get back to normal life or at least get rid of all this pain he brushed me off by saying we'll see what the injection does I don't want to put you under the knife.

I really dont know what to do, I feel like I'm in limbo at least another 2 months off work??

I have no support network, my boyfriend lives 15 miles away and mum and dad live in turkey. Im going there in 3 weeks for 10 days. Flight will be awful. I just want some advice in what I might be able to do

Thanks for taking the time to read war and peace!

xxxx

2

Hi there,

First all I know how awful it is for you to be in chronic pain and to feel like you're getting knowhere. I also have two very young children and am now off work again with this agony. I'm a little bit further down the road so thought my reply might help.

This is a problem that I've had for three years now on and off since I was pregnant with my son. If you want the full essay check out my other posts lol! I have got three prolpases in my lower back one of which I'm convinced are causing my chornic pain although it is just showing up as a minor bulge on the MRI.

I have just spent three weeks having everything tested to find the cause of the pain and neurological symtoms I have (drop foot and inability to walk or stand/sit due to the pain in my foot) Surgery has been completely ruled out for me to so now I'm looking at other options.

I was on a lot of the meds that you mention and found that nothing touched the pain except morphine, that plus caude equina symptoms was why I ended up in hospital. I was taking tramadol, amitirptylene, diazepam and diclofenac and nothing worked I was awake every night with leg tremours crying with pain. I tried Garbapentin, it did nothing and was told that I have the constitution of a horse and meds that would knock others out aren't working. I am in the process of changing to Pregabalin which is the newer version of Garbapentin. I only got this because the Neurologist at the Hospital insisted (it costs the Docs £100 a week) so that may be an option for you? I have been able to move my toes and foot again and only on it for two weeks so that is positive Wow really, it's not really helping with the pain yet but I need to give it a month and be up to the full dose.

I have also been frustrated at how lacking in compassion the Consultants can be and found writing all my questions down before speaking to them helpful (especially with my drug addled brain) It is such a hard thing to cope with whilst still being a Mum and trying to hide the pain, I have a "pain" face aparently. I'm lucky to have my Husband at home but we equally are feeling the strain as I'm normally out at work full time and our relationship is under strain.

After being in the Neuro-surgery ward in the NHS for three weeks it was certainly an eye-opener. If they could fix you with surgery they would, if your bulge is minor on the MRI they won't operate, the Consultants have such a God complex. I wwas told it wasn't my discs and referred to Neurologists. So I saw my Osteopath today and asked him to perform traction on my back as I still don't belive my discs aren't the cause of the pain, and when he moves the vertabrae off the disc, amazing no foot or leg pain, completely gone. Of course when he lets go there it is again. So I know it's the disc despite the MRI, he said they need to MRI in a sitting or standing position to see the true disc situation. So I'm trying accupuncture next week which I've heard good things about. The Osteopath can't fix my back but he helps with all the muscles around the spine as they get very tight with all the nerve pain and spasms.

Anyway, I feel like I'm rambling now, just wanted you to know that you're not the only one in this position, I have had the nerve root block injections but they didn't work for me but you should try it as they do for some people. I know the waiting is the worst thing of all, I ended up booking a private appointment at a private hospital the NHS were being so slow, events overtook me though. Don't know how much they are if you can't bear to wait, you could find out online.

My family are a twelve hour drive away so it's hard. Can you rely on any friends to help with the children? Sorry don't know how old they are, but it's helping for my daughter to go on lots of playdates. I look normal (apart from the walking part) and put on a brave face but I'm realising that I have to let my friends help me more and be very specific about the pain and how hard life is.

Hope some of that is of help, let me know how you get on. When flying I get a wheelchair assistance with Easyjet as I can't walk the distance from plane to arrivals desk and carry bags and my two year old. I find it very hard to accept my limitations, I'm quite stubbourn! Good luck, hope you find some relief and if you find the magic solution, let me know

All the best

Helen

 

3

Hi Helen

How very bizarre - i had just read your experience/thread. Thanks for reading and getting back to me.

I had started to reply when I thought I didn't want to ramble on again but then this reply came through.

My boys are 13 and 7 my 13 yr old is fantastic and helpful, knows when I'm in pain. I also have a high pain threshold - i had to be sedated to have my wisdom teeth out and was give 3.5 times more than the average adult. Today it was like the consultant was just rushing and not bothered. I have took my bedtime meds at 8 and I'm still feeling the shooting pains down both legs. After reading your thread I'm going to see my doctor tomorrow. Like I said I now livve in liverpool. When I had the first MRI I was on alsorts tramadol diclofenac (which got changed to naproxen ) amytriptaline and pregabalin. I was, at that time, off work as a teaching assistant - i went to my doctor and said i was in a vicious circle and needed to get back to work to stop the depression getting worse and therefore making me feel pain more. So i went back to basics and took it as and when. This, like I said, has got me to today where i take the meds religiously - i have a little box of meds by my bed take them as i wake and then at bedtime.

Think I will ask for a second opinion or see a neurosurgeon - I really dont want surgery but I'd like to be at least able to pick my son up from school. I wake in the night when moving in my sleep and have a "hangover" every morning - without the night out - gutted for me!!

Im all for the try of injections - i just still feel that the consultant was preoccupied with the fact his surgery was 1hr 15min behind schedule.

I need to get back a little more of me, if that makes sense. I'm not too bad when my boyfriend is here - still in pain alot but i'm just lifted slightly - oh that was the other thing he asked my weight. I'm now 16st I've put 2 stone on since all the meds. He told me I need to loose weight and when I said i know but how can I if I'm near enough housebound? I really love swimming - but if i needed help to get out of the pool I'd be mortified. So hes refering me to a dietician. Although the injections are on the horizon i still feel like it was a waste of time - i worked with horrendous pain - i now work in a call centre, i'm currently off sick and really want to get back. Even if the pain is manageable I'd be happy.

You've gone through so much too, even worse, all that time and all those tests but with no real answers.

Like you said - just need that magic pill. Im 40 in Aug and now i feel about 80.

Inbox me if you want to rant. Its hard. Harder for you in some respects as you're the breadwinner and your husband will feel rather helpless with your condition. You'll be fine - you're still together after 3yrs of all this. You must be a very strong unit xxx

Take care - like I say feel free to inbox

😉

PS hope my spelling and punctuation are acceptable haha👍

4

Hi Helen

just a quick question how long was it before you noticed the nerve block didnt work and was it a root injection under ct guidance. I had mine done nearly 3wks ago after being rushed in with cauda equina syndrome although the pain had gone got the constant ache and also still cant feel under my toes.

I think unless anyone has had this type of pain it is hard to comprehend what its like xx

5

Hi Suzanne,

I had both of mine when I was eight months pregnant so not sure if that effected the reults. They are meant to work within a couple of weeks and I was told to be prepared for the pain to be worst at first before the steroid works It's not a particularly uncomfortable experience really, they isolate the nerve root using x-ray and inject at the root point. One tip though, don't travel and lay flat for an hour after the procedure. Second time around I was chucked straight out and did thre  three hours in the car and had an awful spina

l headache that only happened when I stood or sat up. I know that they provide relief for plenty of people though, good luck!

Sandie-pants I'll message you! Thanks

6

Hi sandie,

Sorry for the long letter but i really do feel you 100%.

My name is Haytham and I am from middle east.

I have the same problem you have,doctors said to me i have a herniated disk l5s1 and i need an operation and the date was set to first of September and my wedding date is first of September )))) so i asked the doctor to move the date and he said this the nearest date and if i didn't do it i need to wait 3 months after September ( so i went to another doctor and he said my herniated disk is not big at all and i don't need an operation, he said i need to be injected with niddle on my back and that's it but i don't know i should listen to who ???today i will visit a third doctor and will see what he said... right now I'm visiting a Chinese clinic and have made 4 sessions and i don't feel any improvement but i will keep going there...i used to live alone since begging of june when i had the disk and the pain was severe some night i was holding the pain with one hand and tapping myself with the other hand and saying to my self (shhh shhh you will be fine everything will be fine) at this moment i was destroyed and i couldn't stop crying for almost 1 hour,am 35 years old male 6 feet tall..the next day i couldn't go to work..i was on bed 3 days alone i go to tolit twice a day and water next to me and chocolate bars and that's it...after that my sister and her husband came to me and took me with them to their house which is in another city..WHEN I STARTED LIVE WITH THEM AND THEIR KIDS I FELT BETTER so my advice to you don't live alone as much as you can...stay with your parents in Turkey as much as possible and in Turkey try to visit clinics their and your parents can help you with that before you go.

Wish you all the best and i hope you get better as soon as possible.

7

Hi

i feel for you, your story sounds so much like mine. First of all YOU ARE NOT ALONE, !!  You are on same medication as I am! You just need to keep your chin up and keep pushing the doctors! The injections didn't work for me but we are all different. The warm weather will do you good, try and relax as much as you can out there. Also my GP gave me some diazepam for the flight. It will relax you, last time I went on a plane I had two little children with me so I just had one which took the edge off for me. Speak to your GP and ask them. Don't let the doctors fob you off! You know your body keep telling them the same thing. If I was you do the injections if they work great if not then they will try something else. We are all here for you x 

8

So, this was me nearly 12 months ago.....

2 injections later and I'm still the same. Not on all the medication as it didnt really work anyway. I have a new job - less stressful and no threat of being sacked due to hitting sickness target, but longer hours.

I take dyhydracodeine in work when i need to. Naproxen twice a day amytriptaline when i cant sleep and now have restless leg syndrome - which is horrendous and has got progressively worse. I need to go see the consultant again and see a physiotherapist but tbh it doesnt help. I try to keep moving but still cant do simple tasks and feel drained at the end of every day. The depression is getting slowly worse. I just want to be back to normal. I am in constant pain all day every day and the tablets - if taken properly at the weekebd totally wipe me out. I get standard pip which pays for a cleaner and my ironing to be done. And my son is still a great help.

Even though i am back at work i am in more pain but i was getting less and less money and bills were mounting up so i have to be in pain but the bills get paid...... what do i do?

Thanks