Discharged from pain clinic

Bones, joints and muscles
1

Hi all

today I saw my pain consultant for a follow up after my epidural steroid injections that didn't work..

He prescribed me Gabapentin and told me basically there was nothing he could no longer do for me. As well as telling me that the pain I have is here for life so I better get used to it. 

come home feeling so deflated I don't sleep any longer than 4 hours a night as the pain is unbearable, you know the story so that has a massive impact on your life. 

Has anyone tried a private osteopath? Got arthritis herniated discs and sacro joint problem 

thankyou in advance

 

2

Have they offered a Lidocaine infusion into the blood stream??

What about an implant (Spinal cord stimulator)

If they have stopped at the injection I'd say they aren't very good!

Ask to see another Dr or specialist nurse at the pain clinic!

I'm going for a lidocaine infusion at some point to help with my nerve pain!

If that doesn't work then he'll try the SCS!

3

Hi Lisa

Firstly sorry to hear that you have some issues and many on here will sympathise and understand the frustrations you have.

Do you mind me asking your location, U.K., USA ect, as it can help giving you advice. I'm in UK.

What have you been diagnosed with, how long have you had symptoms for and are you on any other meds??

I will try and give you some advice if I can, as I had to fight to get where I am today on the NHS.

Regards

George

4

Hi thanks for replying. I am in the UK got osteoarthritis in spine 2 herniated disc annular tear and sacro joint pain. 

Have had problems for years but last year has been awful especially the night pain. I am 45 years old and just feel like I am a hindrance to the doctor at the moment. My GP won't refer me to anyone to help just pain management. Tried loads of meds so now this Gabapentin and co-codamol tried tramadol but side effects to bad when you have to get up for work which I am totally struggling with as on my feet all day 

any pointers would be great getting nowhere at the moment 

thankyou 

5

No he told me as the epidural injections haven't worked no point carrying on just try Gabapentin and I am discharging you. 

Praying it works 

6

I hope it does. Only thing is its not that strong until you get to higher doses. It didn't agree with me.

I'm on Carbamazepine, diazepam and Amitriptyline for nerve pain/muscle spasms.

The carbamazepine is actually a epilepsy drug that can be used in nerve pain. There's a stronger one of this drug as well.

I've been through about 8-10 trials with different meds for nerve pain and my Dr is still trying. Seems like a hit or miss with who you get. I've got the Lidocaine to try, if it works then it'll be every 8 weeks or so I get it.

If not then it's onto the SCS once my double fusion surgery has settled down. Only had it done 9 weeks ago tomorrow so he won't put that in just yet.

What I've found with the NHS is if you don't keep bugging them and being persistent they'll happily let you slide on by.

7

I am also on Gabarpintin and it's not helping at all with the pain.I am going to ask my surgeon if I can just stop taking because it's not helping and if my nerve damage is permanent then what's the use if not going to get any better.

8

Thankyou Gabapentin is an epilepsy drug as well. I tried Amitriptyline but that gave me really bad blurred vision. I will see how it goes I don't think they understand what it's like to be in constant pain and the effect it has on you.. Tried to explain it to him today but he basically told me get used to it it's here for the rest of your life 😩

9

I'd have knocked his block off! Only kidding. If they had told me that I'd have asked them to refer me to another pain clinic.

Have you been seen by a neurologist or an orthopaedic surgeon?

You can insist your GP refer you. Find the closest one to you with the best reputation and get your GP on the case.

10

Is there no surgical option for you?

11

😂😂 I felt like it. No I will go back to G.P see what he comes up thankyiu

12

Hi Lisa

Good your in the UK as it's easier to advise you what's happened to myself and what I did. Long story but will try to narrow down a bit.

Gaberpebtin I found didn't work, and was put on to pre gablin, but this can cause weight gain at high dosage, but this and Duloxetine help reduce some of the nerve pain, i am also on diazapam, Amertriptiline, oxymorm, targinact ( long acting morphine ) and a few others. It's funny how so many people I have met can't tolerate tramadol, it made me dizzy and so sick.

I prolapsed 3 discs, l4, l5 and s1 also had a annular tear back in 2010, I was 31 when this happened. GP gave me some pain meds to help at this stage my pain was only in my back and couldn't stand straight. I was also refered to physio which I found useless. After about 4 weeks the pain got worse, so went back to the GP and was refered to the pain clinic, like you I got the this will get better or you just have to life with the pain. I eventually went back to GP for a 3rd time and demanded to be refered to a orthopaedic surgeon at my local hospital. You are within your rights to request this so don't take no for a answer. I finally got refered late 2010 and was sent for a MRI, now this showed the extent of problems. But from here it gets difficult as the surgeon felt this would get better on its own. I went on until 2013 on massive amounts of pain killers and struggling to do anything. I then paid for a second opinion ( which I wish I did earlier) you GP can refer you and it cost me £200 but I got to see a really good surgeon and he informed me I should have had at least a discectomy about 6 months from original injury as it didn't heal. I had this done but he put me back on the NHS but booked for me urgent surgery as he felt I had been neglected by other surgeon. Within 2 days of my surgery nearly 85 % of all my pain had gone. Sadly about 8 weeks in my discs went again so had to have a spinal fusion, but this hasn't taken. And I now have major nerve damage which causes pain in both legs.My surgeon refered me to Dr Al-Kaisy at St Thomas hospital in LLondon, they are the largest pain centre in the EU. I have been put forward for a spinal cord stimulator, which is a device the put in to the spine and on to certain nerves and it blocks the brain recognising the nerve pain. Long waiting list and program to go through and I'm at half way stage and still no device, so I can't say it it will work.

Get refered to a orthopaedic surgeon, your GP has to offer this.

Have you had a MRI, I assume you have because of diagnosis.

Discuss your pain meds and get a second opinion from the pain clinic.

That the first 3 things you need to do. If push comes to shove take your self to A&E and explain your symptoms and pain, they should get MRI done and refer you to a ortho surgeon if your having issues with your GP.

It's all so frustrating especially when you get someone telling you to live with the pain. They just make you feel like your wasting there time. If only they could have our pain for 1/2 a day!!

Keep us updated and all the best.

George

13

Good advice George. 👍

14

Hi George

So sorry you've been through all this and thank you for sharing your story.

Not one mention from my G.P or pain consultant about any of these options so thanks for the insight.

Can I ask did you go to orthopaedic surgeon in London as well for second opinion? Just be good to know who listened to you and took you seriously.?

Thank you

15

Hi Lisa,

Boy, it is very deflating hearing from the doctor they can no longer help you.  I'm guessing you are on medicaid or medicare.  Try to see if your pain consultant will send you to a neurologist or a neurosurgeon.  I take Gabapentin for neuropathy - and it helps with the pain quite a bit.  I have neuropathy in my right foot, and it is painful for my foot to touch the mattress even, he needs to work you up to a high dose of 800 mg - take 2 of those 3 or 4 times a day throughout the day, that's one thing I learned - I was trying to take them in the morning and at night, but I do better spacing them out through the day.

Hopefully you can get a different pain doctor.  Shame on him for telling you to just get used to it.  Obviously he doesn't care about your pain.  Of course, if you don't have chronic pain,  you don't understand it, but your pain doctor of all people should at least be understanding.

Stay on him about increasing your dose. You can't start out on full dose, so they need to build you up to it.  Good luck Lisa.

16

Of, and if Gabapentin doesn't work - try Lyrica. Or a combination of them, but never let a doctor tell you to just give up.

 

17

Hi Lisa

I live in camberley, Surrey so my local hospital is Frimley Park, i actually saw a different orthopaedic consultant but from the same Hospital. After the Fusion failed he actually refered me to a 3 rd orthopaedic Surgeon call Mr Lucas at guys hospital in London as he wanted to make sure he wasn't missing anything. And he and Mr Lucas both refered me on to the spinal cord stimulator program. It was amazing the difference in how different the new pain consultant made me feel. They completely understand that your pain is real, and understand the stress and pressure of living with chronic pain. I can't wait to have the device fitted, but they have said it isn't the Mirical cure and doesn't work for everyone, also have to make a lot of lifestyle changes.

Where in the UK are you from??

Regards

George

18

I am in Bromley so Guys hospital isn't to far from me.. Good luck with your treatment I would love to know if it works for you. Can't believe all these things are on offer to us and I get told to do one basically 😂

19

Hi Linda

Thank you for your reply he told me to gradually increase the dose over the next few weeks to 3 x day which will make it 900mg a day. I can't go back to him because his discharged me. So if I want anymore help have to go back to G.P.... Just tired of it all going from pillar to post, trying so hard improve my fitness now going swimming a couple of times a week so we will see how it all goes.. Thank you

20

No problem Lisa, i am on a waiting list for a trial of the SCS and have to wait up to 16 weeks, but once I have had it I will let you know how it works. I'm keeping my fingers crossed.

I had to give up my job last year as I couldn't continue to struggle, I was running a very busy transport office for a haulage company, and hours would be long days 5 am to 1900. But it got to a point where I couldn't sit for such length of time and was hunched over trying to stand after 30 mins. At 37 this was a very hard decision to make but I didn't feel it was fair on my family as I just kept going and weekend would spend most of my time resting as the pain intensified for me. But I have been told even with the scs it highly unlikely I can ever rtn to work, but might be able to do the odd hour here or there. At least I get to see my 6 yr old daughter and 3 years old son a lot more. Also I gave up driving as the pain in legs just made me feel unsafe.

Keep us updated on how you get on with your GP, just explain what's happened and be honest about the effects your pain is having on you and how the pain Dr made you feel. Know your rights that the GP should refer you to orthopaedics and then they can refer to Dr Adnan Al-kaisy at st Thomas hospital. In not sure the GP has access to this centre as I think it is ortho surgeons that can refer following other trials that failed, ie discectomy, fusion and all the injections they offer.

Wish you all the best and hope I have been of some help to you.

Regards

George

Ps sorry if I Babel a bit and hope it all makes sense. The medication makes me forget things :-)