Chronic back Pain

[katwilson04]

Hello, just found this forum, and im hoping I can get some advice or help. 3 years ago last month my back decided it would give me jip and also give me sciatica down my left leg (due to the disc being on it). The following May 2011, I had surgery to remove most of once of my discs, with the 3 under that one being basically non existent. Although the surgery removed the excruciating pain, ive been left with this chronic debilitating pain that's constant, and the original surgery has been classed as failed. Ive had all the pain clinic's injections, epidurals, facet joint, nerve block, and all have failed. Ive been on everything you can imagine, from co-dydramol to fentanyl, and nothing works. Im still managing to work but only part time, but its totally affected my life, and changed it too. Im constantly told that im lazy and do nothing to help myself by family, (their idea of motivation sucks!!), which just adds to the stress. So after all this rambling, im stuck! I don't know what to do now, my doctor has basically run out of options, and im running out of hope! Anyone help?

[earthwitch]

This might sound a bit of an off-the-wall idea, but If you haven't been checked out by a rheumatologist for spondyloarthritis then that could be a last ditch attempt to try and get some answers. That is a type of spinal inflammatory arthritis, and its notoriously hard to get diagnosed as its too often not even suspected. Have you ever tried taking just straight NSAIDs (antiinflammatory meds) at full prescription dose? Thats things like ibuprofen, or naproxen or diclofenac. Prescription doses are much higher than over the counter doses, but if it is inflammatory pain, then these so-called "mild" painkillers will deal with it far better than stronger painkillers often, because they deal with the inflammation that is the cause of the pain in spondyloarthritis. If nothing else has worked, it might be worth trying attacking the back pain as if it was inflammatory - if by chance it does work, then thats good ammunition to get a referral to rheumatology for suspected inflammatory arthritis. Inflammatory back pain usually responds to NSAIDs noticeably within 24-48 hours (or a short course of prednisolone of around 15-20 mg a day for up to a couple of weeks), so you wouldn't have to wait long to find out. I have to stress that this is just an idea, and it would be a kind of last ditch attempt to try treating it in a completely different way, but you would definitely need to discuss it with your GP first. Just ask if its worth trying to treat it as if it was inflammatory for a couple of weeks to see what happens. You can usually still take codeine or other strong pain meds with NSAIDs or steroids, so wouldn't have to stop what you are already on.

[katwilson04]

Thanks for your response. That is the only person/surgeon/specialist that i havent seen! At the start of it all i was taking ibuprofen (400mg 4 times a day),for 18 months, but had to stop due to it irritating my stomach. Ive only recently started taking it again (4 times a day), after being given omeprazole (to stop the irritation). Ive also had diclofenac which made no difference. I currently take paracetamol (500mg) 2 x 4 times per day, and Ibuprofen (400mg) 1 x 4 times per day, with dihydracodeine 60mg slow release at night. I ahve to say that the paracetamol and inbuprofne together does make the pain slightly less sharp, and a tiny bit more bareable. I will discuss this with my doctor next week! Thanks very much! Kat

[sharelle]

Hi have you tried gabapentin or amitryptiline? Gabapentin is good for nerve pain and amitryptiline can help with that and also can help with sleeping. Anti depressants too can help with pain. It is horrible you aren't getting the support from doctors or family. Try and get it through to them how it affects you. Last resort try pilates, aqua aerobics. The advice re seeing a rheumatologist is also a good idea. Good luck

[katwilson04 in reply to sharelle]

Hi Sharelle - yes ive been all those tablets, and everything in between, and none worked for me. Thanks for the advice though, going to have to look in to more things, to atleast prove im not doing nothing!

[Reykua]

So sorry to hear about your chronic back pain katwilson04 and really impressed that you've continued to work inspite of it. You sound like a very practical, conscientious person with a good work ethic and I'm disappointed for you that your family are not being more supportive.

Welcome to the forum, In truth, all of us will agree that it's often very difficult for family and friends to truly appreciate what we're going through - not just the pain but the fear we sometimes feel when we think about our prognosis.

Earthwitch's suggestion is brilliant. Don't forget to take along any documentation from your GP, physio or chiropractor. Exhausting all possibilities and getting a full understanding of our conditions (regardless of the eventual diagnosis) is often best for our mental and emotional wellbeing and our ability to explain things to family and friends.

Just to clarify, which pain meds are you currently taking? are you still experiencing the sciatic pain as well? How does the pain you have now compare to the pain you had prior to the surgery? Would you say the surgery has made your condition worse or different and if so, in what way? How is it affecting your mobility and how do you manage working and other domestic chores? Sorry for bombarding you with questions, I hope I'm not being too intrusive, just hoping that more information may enable us to give specific advice or suggestions.

Great to have you on board. Look forward to hearing back from you.

Stay Positive, Stay Strong

[katwilson04 in reply to Reykua]

Reykua thank you for this lovely comment! Its so hard to explain how im feeling to anyone, they just don't understand. Most people try and compare my pain to their back pain - which is fair enough, however they haven't had surgery and things done to their skeleton!

I looked in to Earthwitch's suggestion today and printed all the information off to take with me to doctor on Wednesday- worth a try!

At the moment I am taking paracetamol (2 tablets) 4 times a day, ibuprofen 4 times a day, Omeprazole (for the ibuprofen), and dihydracodeine 60mg slow release at night, usually around 6/7pm.

Not intrusive at all - happy to share! Yes I still get the sciatic pain quite often, mostly in my bum and the top of my left leg above my knee. The pain I have now is very different to the pain I had before surgery, before it was excruciating pain, couldn't move for crying and screaming. Now the pain is (hard to describe), deep, thumping, aching, stabbing, constant, some days takes over your whole body (mind and soul too!). My mobility is affected, as due to my sciatic nerve being damaged my left leg has gone numb - I was told the feeling might come back in about 18 months, but 3 years on its still the same, and its actually gotten worse since I had my last spinal injection, its even more numb. Chores at home take twice as long, im not really able to carry anything (shopping etc), although I do but that's more stubbornness really. I always over do it, as I want to be able to do things like I used to 3 years ago, but then pay for it immediately afterwards, usually by not being able to walk or stand up. Work is 5 hours a day, 5 days a week, im admin so at a desk all day, but have a 2 hours journey in total every day on top of that, working is actually hard going, but it sort of keeps me sane!

Thank you!

x

[nedd]

Just wanted to say welcome.

Everyone has given good advice. Good luck with your search for answers.

Just my take.

In the beginning i found that other people's attitudes was almost as depressing as the pain.

It's was hard enough coming to grips with the restrictions the body enforces without others making me feel guilty and implying that I was not trying hard enough.

Then I got referred to a Pain Management course. While it did bugger all for the pain, I did learn loads of helpful tips to avoid flare ups and avoid feeling guilty. With the added bonus of meeting a great bunch of people.

See if you can get a referral, I was stuck as you are and while I still have downers, the course helped validate how I feel.

Pain is so isolating this site helps me to remember I am not alone, see ya.

[katwilson04 in reply to nedd]

Nedd. Thank you! You are right, people's attitudes are depressing, and not knowing how to explain things, or even to get people to understand is so hard, infact its so tiring that ive given up! Ive had to adapt and change my life dramatically in the past 3 years, and ive learned to live with it and get on with it. It seems that everyone just thinks I do nothing, I leave work, and do nothing for the rest of the day - if only that was the case!

How did you get referred to a Pain Management Course - was this through your GP? Im not sure if there is such a thing in Scotland, but worth finding out about.

I was referred to a psychologist at the beginning of the year who has said that I am depressed, but she taught me some good life tips too - taught me to have an image a thing/object for my pain - it was worthwhile, but it doesn't deal with the other people in your life!

Although I hate to hear other people are in the same situation (or similar), your right, im not alone.

x

[nedd]

Reffered by pain clinic, when they tried to sign me off I was so devistated I just sat there staring into space. With hindsight I think it was a case of give me something to get me out of the door. But ask your G P.

Also I found these down loads helpful I filled my iPod up with them in the early days.

ableradio.com/

A range of tips, information, experts and us wot are living with the pain makes for interesting listening.

You is not alone girl.

[katwilson04]

So I had my GP today and I asked about the spondyloarthritis, earthwitch suggested. My doctor is ace, he is so totally straight to the point and honest with me. he explained what it was etc, and showed me on a back model where and everything, but he has said that this isn't what I have. Also that if it was that, the facet joint injections and the other injections would have helped it, but they didn't. He did mention degenerative disc disease to me today, and that's the first time ive ever heard this, so I "googled" it, and its actually quite ground breaking but scary to read every symptom in black and white right there in front of you! So now have to see what I can do next, and the journey continues...............!!!!

[stiffy in reply to katwilson04]

Doctor referred me to pain clinic. Mine was diagnosed after asking the physio at the pain clinic to refer me for an MRI as the x-ray after a horse riding accident only showed arthritis and I needed to know where the pain was really coming from. Turns out i am not crazy after all...spondylosis, disc degeneration and facet joint arthrosis, with some nerve problems. So had 6 steroid injections between the joints. The spondylosis seems to cause most of the pain..I'm on 8 x 30mg of codeine phosphate ( bad memory, and serious nightmares if i take 4 by mistake! ) and off to the doc again soon..may try amitriptyline or go to the pain clinic again. I was a support worker for 15 years working shifts around the clock..rarely home. Now i am home alone supporting myself. I know exactly what you mean about the shopping..I cant even carry a bag of sugar for 10 minutes, home delivery is better..the lads even carry it upstairs for me, I feel guilty asking them to do that; when that was part of my job once. You will also get to see a psychologist alongside the physio if you go the the back pack club..they will give you some physio to do if you are able..and lots of handouts about managing other people, relaxation and being assertive..