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23-02-2010, 11:19   #1
Saffy
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I can't seem to find a nice group in the UK that has a good turnover of posts on chronic back pain and am hoping there are people here on the Sheffield Forum that can join this thread and have a moan and a groan about how flippin depressing it can be to have constant back pain.

To cut a long story sort of short .. my back pain started in December 2004 when I stood up from sitting down and felt my back "go". The following day I could hardly walk and was diagnosed with a slipped disk

Prescribed Diclofenac, Diazepam and Codeine - not able to take the diclofenac as it really caused actute indigestion.

Since then I've been on .. Dihydacodeine, citalopram, naproxen, tramadol, buprenorphine patches, amitryptilline, pregabin, gabapentin, zomorph, oramorph, lodocaine plasters - and am now on tegretol retard .. the first tablet, taken this morning, has made me feel horrendously dizzy and sick; almost drunken. Have been told to up my 20mg amatryptilline to 50mg a night ...

I had a discectomy in 2007 .. and have now got degenerative disk disease and bi lateral facet joint overgrowth which is causing constant pain.

I take lactulose to make me "go" and upping the opiates I am advised I may need a stimulant laxative aswell ..

My life revolves around pain relief .. and I'm fed up with it !

There must be someone else out there who knows exactly how I'm feeling ...
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24-02-2010, 07:28   #2
Saffy
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Blimey .. just me then !
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24-02-2010, 16:10   #3
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Hi Saffy,

Firstly you are not alone, and secondly I am really sorry you are going through it all. I have been and am in the same boat. I was diagnosed with Ankylosing Spondilitis last year and since then have been on most of the tablets you have been on but for one reason or another I have completely lost faith in all of them. I am still on medication but not for my back trouble for other problems. I was referred to a pain clinic but they failed to ever give me an appointment so the GP and I gave up and he basically prescribes me Oramorph for when things get so I can't walk but I try not to ask for anything now as it causes so many other side effects. I struggle to bend most of the time for the pain and it is so exhausting especially in winter.

Anyway wanted to let you know you are not alone.

xxx
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24-02-2010, 16:24   #4
medusa
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I've had chronic back problems for the last 18 years and over time have tried everything from acupuncture to shiatsu to help cope with the pain. I also started off trying to find a support network but when I started at least I couldn't find anything that was helpful- all I found was a local NBPA meeting, which was small and infrequent and didn't help me much.

The vestigial ribs attached to my T12 are full ribs and I've then also got vestigial ribs on L1 and L2 and a bone from the right transverse process of my L5 which articulates with the back of my right ilius, causing pelvic problems and a twisting of the L5 vertebra, which led to degenerative disc disease.

On top of that, the surgery to remove my first tumour from one shoulder caused all of the muscles which go from my spine to my shoulder on that side to get their nerves disconnected, so I've also got a significant thoracic scoliosis and the scoliosis and lumbar problems set each other off in making my back unstable and less able to cope with work. My discs L3/4, L4/5 and L5/S1 appear completely absent on MRI and so surgery would only be helpful for me if and when someone invents replacement discs because I have insufficient flexibility (because of the extra ribs) to withstand having any vertebrae fused.

I'm on amitriptyline, carbamazepine, sodium valproate, methadone (because I'm opiate intolerant and get sick on one co-codamol), naproxen and ranitidine to protect my stomach from all of that lot, but then also use my TENS machine a lot and see my osteopath regularly and top up with lots of specialist rehabilitation yoga, which I can't recommend enough.

You really aren't alone Saffy. I'm lucky enough to have a palliative care physician so I don't need a pain clinic, but I'd recommend getting to a pain clinic and starting some yoga (with someone who knows what they're doing, like Frances Homewood) to get as much of your core stability up as possible.

As far as support groups go, I'm sorry, but I never found anywhere and gave up looking.
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25-02-2010, 08:36   #5
Saffy
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Oh thanks so much for your replies !!

Had a really strange night last night and wonder if was side effects from the higher dose of amatryptilline or the Tegretol Retard .. kept waking in the night with my body jerking ? ? ? Almost as though I was going into spasm .. strange .. will get onto the docs if it happens tonight too.

Apart from that, am really keeping my fingers crossed for the forthcoming appointment at the Northern General in March. This is to talk about a dorsal column stimulator (sort of an internal tens machine) .. I think they like you to go down the drug route first.

Sent my daughter for my prescription yesterday .. it comes as a bit of a shock when the pharmacist comes out with a carrier bag doesn't it? Hahah!

Thanks again for the replies ...

Hope you are doing ok ... and keep smiley. Yes, the pain does get you down, but I think the fact that you are living on medication gets you down more.

OOh .. aswell as lactulose they are now going to prescribe me a stimulant laxative .. Yeahh .. great .. I can see me googling "public toilets" wheneber I go out !

heh
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25-02-2010, 12:51   #6
friend2felin
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Good luck with your appointment in March Saffy. Hope that you get what you need from it.
Yes, you should see the GP soon if you are having strange symptoms. The GP might want you to change your medication regime. Always best to get it checked out.

I know what you mean about the carrier bag full of tablets. Mine is always shocking too. It made me laugh when the last time I got my tablets from the pharmacy the dispenser put a leaflet in the bag to remind me not to order tablets i don't need! Wish there were tablets I don't need.

I had to be on all kinds of laxatives last year also. I kept getting anxious about being on them.

I am on antibiotics at the moment for a chest infection. Its great keeping drugs companies in business don't you think? lol
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26-02-2010, 07:17   #7
Saffy
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Heh ... it's great to keep a sense of humour too !

I must remember though .. no more than ONE glass of wine if drinking
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26-02-2010, 07:57   #8
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Hi Saffy and all fellow back pain sufferers!!!

I have had a severe back problem now for 7 years and have had all the usual medication and treatments over that time, acapuncture, tens machine, nerve root injections, chiropactor and physio. I have been to pain clincs and taken a "cocktail" of drugs including tramadol which I got addicted to and had to do "cold turkey" to come off it. My life revolved around pain relief and couldnt do anything as it affected my whole life.

Finally after no real relief or success I had an operation in november to put an inplant in one of my discs to open it up and hopefully bring some relief from the constant pain in my back and legs. Since then I got progressively worse to the point that I cry every morning and cannot stand for at least 45 minutes until my painkillers kick in. I saw my surgeon last week and told him all this and low and behold after further x rays realise that he had put the inplant into the disc below where it should have been. Therefore I have to go through the whole op again...... 6 weeks of severe pain, imobility and the trauma of having another op on my spine........ Not a good feeling I can tell you. The only light at the end of the tunnel is that hopefully this time I will get some relief............
Jez
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27-02-2010, 07:23   #9
Saffy
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Oh my .. I really feel for you Jezabel. That's absolutely disgusting !! You can still see that light though. Keep it in your head, as you need to.

I acknowledge the effect that being on pain meds all the time does to your life .. and those that share it with you. My OH is as sympathetic as he can be but he has to do everything aswell as work. He had a real go at me last night as daughter No. 2 needs school shoes and she asked him to take her .. the result of last night's "discussion" is that I am now dosed up on Oramorph and am taking her myself. It's not so much driving that bothers me, it's getting out of the car after sitting and walking .. Oh well.

Which hospital did you go to Jezabel and err, dare I ask what surgeon?

It's good to have somewhere we can have a grumble and know that those reading it, understand.

Saffy
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28-02-2010, 12:40   #10
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I dont think I had better mention the surgeons name before he has done the op again
It was private hospital in sheffield........... Not that it should mean better care but neverless I have to wait now till May.
My employers have been really understanding up to now with me missing work due to "bad days" and hospital appointments and 6 weeks absence before christmas. I really dreaded telling them my "news" that another 6 weeks absence coming up but they realise its not my choice. I am so aware that in this current climate long term sickness issues dont go down very well with employees. This is probably my last chance at a "cure" and being able to hold down a full time job. I really think sometimes that my future is going to be on some kind of disability benefit and walking with sticks!!!!!!!!!

How did your shopping trip go Saffy? Hopefully without too much pain I hope.
Jez
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28-02-2010, 14:07   #11
Saffy
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Hiya Jez - Not Thornbury perchance? *grin* OOh bugger - the work thing is a worry I know.

I had a MRI back at the end of August at Claremon and the radiographer was huffy about my having to go in feet first because I am claustraphobic, but after I dug my heels in her got me in, but instead of the triangular foam pad they put under your legs, he shoved a pillow under - It wasn't comfortable and having to hold that position for some 40 minutes really irritaed my back.

We were short staffed so I went into work .. Am very lucky as I only work 20 hours, LOVE the job .. but the one downside is, there is only one person on duty at any one time, so any lifting has to be done by the person on duty. Anyways ... the following day I managed to get to work but had to drive in 2nd gear all the way as when I put my foot down on the clutch to change gear one of the strongest sciatic spasms shot down my leg and I nearly hit the roof ... so decided to drive the rest of the way in 2ng gear and hobbled round the shop for my time there.

The day after I was unable to drive so someone from work had to come and get me .... and lift me out of the car to get into the shop ... I was literally crying with pain.

Luckily the nest day was my day off and I managed to get into the Doctor to see if he could give me stronger pain killers (I was on tramadol at the time) ... I didn't need much persuading to be honest, but he told me I shouldn't be at work ...

So, I went off work .. and am still off. This was back in September .... the only form of contact I have had from work, was a letter, together with a pay slip, back in January, informing me that when I am ready to come back to work, I will have to have a medical.

It really upset me that no one contacted me to see how I was, because they KNOW I wasn't scamming it. I've always always done a good job at work and have always been a pleasant member of staff. I feel totally superfluous!

As it is now, my doctor has just said, keep sending in the sick notes .. don't put anything else in with it, no chatty note asking how everyone is (as I did previously) - and see if they get in touch ... I am still waiting.

Sniff ..

Shopping was not too bad .. I went on a real "high" with the oramorph when we got to meadohall and had to sit down and have a coffee (mainly as a reward for actually getting there in the first place) I was nearly in tears at one point though. I was walking as you do .. slowly and deliberately, and it was getting so busy that the people behind me might aswell have walked up my back .. I felt so pressurised to walk faster. I just wanted to say .. "Look .. it's not my fault .. believe me, a year or so ago I used to be zipping about all over the place " ..

Sniff ..

And on that note, I will ensure there is ice in the freezer for a little gin and tonic later !
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28-02-2010, 14:17   #12
friend2felin
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Hi Saffy

It sounds like you have had a really rough time of it. Just one thing that concerned me about what you said. Do you think you should drive while feeling high on Oramorph? You are supposed to inform the DVLA when you have health problems and are on medication. Not sure they would allow you to drive. I stopped driving when I was on all that medication. Don't wish to make make you go on a downer but you have to be careful in case you have an accident.
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28-02-2010, 14:29   #13
Saffy
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Oh! Hmm I didn't think of that. I'll speak to my doctor.
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28-02-2010, 14:57   #14
zoboz111
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I'm suprised my mom hasn't wrote on this. She suffers with chronic back pain and takes alot medication for this. Sometimes she sleeps on the floor as she finds this sometimes helps her. She has other medical conditions too so when we go out i tell her i'll get her a wheel chair but she refuse's. Thankfully now i have a car i can help her more with shopping etc as lifting or walking has after effects. She has a car of her own but is sometimes is so tired from been awake with the pain, she thinks its best not to drive.
Your not the only one saffy and my thoughts are with you xx
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28-02-2010, 15:29   #15
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Bizarre as it sounds, one thing that has actually been a help to me was taking the decision to use a walking stick. It sounds like it shouldn't help, but if you are fitted properly and walk properly with a walking stick there's a certain rhythm to walking which slows you down, paces you and prevents you from making sudden movements. This in turn has reduced the number of falls and all sorts of accidental twitches I have when I'm out and about and meant that I can usually walk further, even if it's at a slower pace.

So although I felt that starting to walk with a stick was a step down in my ability it's meant that I can actually achieve more (although at a slower pace) and fall or hurt myself less when I'm doing it.

All of this has knocked on to other aspects of my life as I'm spending less time in 'fair to middling' pain levels and less in 'bloody agony' which means that my life is cancelled until I feel better- does that make any sense to anyone?
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28-02-2010, 15:40   #16
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Saffy- your experience with not having any sort of interest in your wellbeing from work is exactly my experience too. When I was first diagnosed (which fell on Christmas Eve) I had already got the time between Christmas and New Year booked as holiday so I just disappeared off the radar from work. Everyone knew I was off sick, they all knew why, they all knew which hospital I was in- I even met one of my colleagues in the Weston Park Hospital while he was there working and the look on his face when he realised that I wasn't in my suit and that meant that I was there as a patient was amazing. He recoiled in horror from me and couldn't get away fast enough and if I'd got the energy and ability I'd have been waiting outside by his car to see his face when he was challenged about it later.

I got one card from work and it was a personal one from my national manager and wasn't signed by anyone else. Ironically the head office staff, who have very little day to day contact with the reps, were much more supportive behind the scenes than anyone else I worked with on a daily basis. This included 'forgetting' that I was no longer out in the field and so not recalling my company car immediately, even though it still needed ongoing servicing etc, which gave me another year with having a car before it got removed and various little financial things like not asking for my expenses float back even when it was offered.

The only contact I had with my direct boss after I went off with my second tumour was a phone call asking me to arrange time when he could collect my records for the territory for the new member of staff who they had recruited to have my job (which was the first I knew of being replaced).

Try not to take it personally- it won't do you any good and they really aren't bothered by it either way so probably won't see what your issue is even if you were to tell them about it.
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02-03-2010, 07:53   #17
Saffy
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Thanks .. you're a lovely lot !

I've sort of hardened myself from work .. it's a family run company and I just expected them to be a bit more caring about their staff .. never mind.

My OH really upset me this morning as he said I'm stuck in limbo and I should accept that I'll never work again and then dropped the "this year will be our last holiday ever" in just to depress me further. (I live for my holidays!)

I'm sort of reaching out to each hospital appointment thinking, this will be the one that helps me. I'm due at the Northern General on the 25th to talk about a dorsal cord stimulator .. rather like a tens machine but fitted internally. I think this will help .. I know it wont get rid of the pain completely, but it should alleviate the buttock and leg pain somewhat, which is the thing that really gets me down. (And it should reduce the amount of strong pain relief which rules my life at the moment)

My OH says no one will employ someone who has good days and days when I can hardly walk so would have to phone in and say I can't get in. Yes, he has a point, and I guess underneath I know this, but I just keep hoping .. hoping that the next lot of drugs or the next treatment, will be the one that stabilises my condition to enable me to look for a job I CAN do ... even part time.

I loved my job .. I really did. I only worked part time as it was .. but as it was there was only ever one person on duty at one time and if any lifting is involved, I'm not really able to do it at the moment. I could do it slowly .. but then there would be a queue at the till at times .. which would frustrate the hell out of me. I'm not even sure I would pass the medical anyway as I can't raise my leg further than 5 inches or so without pain and I certainly can't twist of bend without wincing ...

Ah well .. it's a sunny day .. I'm very appreciative that I can share things on here and hear your news too ...

Thank You x x x
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02-03-2010, 08:14   #18
jezabel
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Good morning chick
Reading your last post you could be me in another body!!!!

I can so relate to everything you say and I too live for the next hospital appointment or suggestion of another course of medication.

Waiting to hear from the hospital of new date for second op. I rang them yesterday and told them that I cannot wait until May despite the financial hardship it will cause me - I dont get full pay until after April.

Had a really bad morning today - in floods of tears. Started to make my OH stay in bed until the "bad period" is over because I hate him seeing me like that and he feels so helpless.

Hope you have a bit better day Saffy............
Jez
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02-03-2010, 08:49   #19
Saffy
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Ah Jez .. Isn't it nice to know there's someone out there feeling the same?! Am sending you a huge hig and know you're sending one back.

I do keep kidding myself .. and I think that underneath it all I know that I wont be going back to my old job. My Doctor doesnt think so and the doc at the pain clinic in Chesterfield said he doubted they would even consider fitting a stimulator if I were going back to a job that involved twisting, bending and lifting.

I've too k the plunge today and signed up for some homeworking ... only answering surveys and it will probably bring in bugger all, but at least it will show my OH that I'm doing SOMETHING !

I think the reason he said what he did this morning is he wants me to ascknowledge the fact that I more than likely wont work again (at least not full time .. actually, he didn't even say full time) .. and that I should give myself a purpose again as I think he can see the big black cloud that's hanging over me. (heh)

I just feel like a liability to the family at the mo. Sometimes I can't even be a Mum Taxi !

Keep smiley Jez .. hope you start to feel better about the day too ... have a little potter around the garden.
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02-03-2010, 08:52   #20
Saffy
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OOh by the way Medusa .. my physio gave me crutches to use as I tend to walk with a gait to the right (because of the pain in the left bum cheek and leg) .. it does help. Slows me down and corrects my posture .. but it does hurt like heck because I have been walking "the wrong way" for 6 years now and it's going to take some correcting.

I just feel really embarrased to use them. I know it's silly, but it makes me feel weak and old. I've managed to walk around Matlock a good few times now and not see anyone I know ... apart from last week when I was slowly tottling along and caught the eye of someone in the queue to get to the cash point. There was this HUGE cheesy grin on the face of my sister who knows how I feel about using the crutches and I could feel my face getting redder and redder .. haha .. I could have killed her as she had everyone in the queue laughing with her !!
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