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gerbo
8th December 2005, 11:09 AM
I added the following link on the links page; http://www.patient.co.uk/showdoc/40000178/

It describes the general principles of painmanagement.

It might be useful if others share what methods, or kinds of medications, they have found helpful in dealing with pain associated with scoliosis

tonibunny
8th December 2005, 02:07 PM
That article shows the principles of managing pain with analgesics. When taking very strong painkilling drugs in the long term is not a practical solution, patients in the UK may be referred to a specialist "Pain Clinic" to try to help deal with the pain in other ways.

I am being treated at a Chronic Pain Management clinic. Everyone who gets referred to them starts with a course of physiotherapy, and is recommended to have sessions with their psychologist who explains the biopsychosocial model of pain and helps to teach coping techniques - many people do not realise how depressing living with longterm pain can be, and it is not always possible to completely get rid of the pain. When I was first referred to the Pain Clinic I dismissed the idea of seeing the psychologist, thinking that I could just have some treatment and be free of the pain quite quickly, but now I am getting very wearied by it and have arranged to see the psychologist at the beginning of January.

As well as giving physio and psychological support to everyone who is referred, the Pain Clinic also tailors treatment to the individual. I have been given relaxation sessions and a TENS machine, had a specialist lumbar support fitted, and am in the middle of tests to investigate certain neurological signs that I have.

The Biopsychosocial Model of Pain is very useful to understand if you are living with Chronic Pain, because it's not just the pain itself that is depressing - it's important to also consider the impact of pain (ie fatigue, loss of social life etc) on one's everyday life, and how to deal with that. I will be writing an article on the Model for the SSO Scoliosis Glossary.

Little Ali
8th December 2005, 06:15 PM
Thanks Gerbo. That's interesting. I'm currently having a huge battle with pain caused by Kyphoscoliosis and resultant trapped nerves. I've tried various painkillers inclusing Codeine and Paracetamol, Paramol and Amitriptelyne but nothing seems to work. Sometimes the pain gets so bad that I think I'm going pass out and/or be sick, and you're tight Toni, it is very depressing. It just makes me tired all the time and not my normal, jolly self.

Anyway, just wanted to have my say and I'll let you know how I get on with my Tramadol!

:wave:

Abbi
8th December 2005, 06:42 PM
Its great you have been prescribed a stronger painkiller Ali.....tramadol is great, mind you I wouldn't "depend" on them too much....I was on tramadol for.....about 10/11 weeks, and it was hard coming off it, onto paracetamol and codiene.

I am currently off all my painkillers, after 15weeks...I do have to take maybe one paracetamol, from time to time!

hope it works out for you!

Are you still having physio?

tonibunny
8th December 2005, 07:14 PM
Be careful of taking painkillers long-term, because their effectiveness decreases with time. Tramadol and Codydramol do absolutely nothing for me now, because I took them for years on end.

gerbo
8th December 2005, 07:17 PM
Originally posted by Little Ali@Dec 8 2005, 05:15 PM
I'm currently having a huge battle with pain caused by Kyphoscoliosis and resultant trapped nerves.
Sorry to hear you're having so much trouble. The comments "Tonibunni" (I do feel silly using these internet names, and would love it if people would sign off with their real (first) name), look very relevant. Have you ever been to a painclinic? Also the connection to depression she mentions must be important, and antidepressants in a low dose (amitriptyline) or even in a higher dose are bound to help some people.

Pain from "trapped nerves" can respond quite well to certain antiepileptics (gabapentin being one), worth talking to your gp about (or get a painclinic referrral)

gerbo

tonibunny
8th December 2005, 08:14 PM
Sorry Gerbo, my real name is Toni - I thought everyone knew that, but obviously I shouldn't have assumed so!

I take 75mg of amitriptyline every evening, to help me sleep. I am not totally happy about taking it though as it makes me very dozy during the day too, even though I have been taking it for months. It's great for lessening the tightness in my trapezius muscles though - it doesn't relax them completely but does help a lot.

titch
8th December 2005, 09:02 PM
I've been considering asking for referral to a pain clinic for some time, but have never quite got around to it. Part of the reason is that as long as I stick to the regular GPs at my surgery, they're actually very good about keeping me well medicated - the only times I've had any trouble have been when I've ended up seeing a locum when my prescription needed renewal.

I actually had a stand up row with the last locum I saw, who was quite determined, despite my history of needing tramadol and codydramol ever since revision, that he was not going to prescribe it to me. I made my displeasure at this fact very clear, and he implied that I was abusing. I pointed out that I was using far less painkillers than I had been pre-surgery, and that if he cared to look at the amount I was actually taking he'd find that it had not increased in the last 18 months - I'd found a maintenance dose and stuck with it.

The thing that irritates me more than practically anything else is that painkiller usage is so stigmatised even now. A while back I asked a pharmacist what the risks were to the baby getting pregnant while taking for example 50 mg tramadol and 2 codydramol per day. She basically told me it was an unacceptable thing to do, then blithered on about how sometimes it's unavoidable to take medication whilst pregnant, citing women with epilepsy and bipolar disorder as examples. She made it quite clear that she considered it far less risk for the baby to be born to a mother who was taking all manner of psychotropic drugs and miscellaneous other things that haven't been remotely studied than exposure to a low dose of opioid pain medication, and that basically if you couldn't decide not to take that pain medication you weren't worthy to be a mother :rant:

Little Ali
8th December 2005, 10:28 PM
Me again!
My name's Ali!! Ok...I'm on 20mg Fluoxetine (prozac) per day for depression/anxiety and I've read that Tramadol shouldn't be mixed with it as it can increase the chances of convulsions!! My GP knows what medication I'm on, so I'm wondering why he gave me the Tramadol and how high the chances are of me having problems with mixing the two? :rant: I'm starting to despair slightly as I can't cope or function properly with the pain I'm regularly in! Anyone got any ideas?!!
:nut:

And as for not being worthy of being a mother if you take pain meds!!! YOU WHAT?!! She obviously hasn't tried to live with exruciating long term pain!!! :rant: :rant: :rant:

By the way, I tried Amitiptelyne and it made me very sleepy and unable to concentrate (not good at work) although I know the pain is a major issue in adding to my depression, but not the whole problem. I haven't been referred to a pain clinic although I might mention it to my consultant next time I see him.

tonibunny
9th December 2005, 12:42 AM
Ali, DO get referred to a Pain Clinic - go to your GP and ask them to refer you - make it a priority. If you can't cope or function properly because of chronic pain then you need their help! Honestly, I can't vouch for them all, but the specialists at the Pain Clinic I go to are absolutely brilliant. I struggled on for months trying to push past the pain and my work went into a downhill as I found it harder and harder to cope, so please don't leave it and let yourself get as low as I did.

I was taking Fluoxetine and Tramadol at the same time too, earlier this year! Blimey.

Marti
9th December 2005, 05:52 AM
I haven't been on many medications for scoliosis pain (only tylenol with codeine, morphine after my surgery, and ambien when my hip was causing me too much pain to sleep), but boy do I know about medications! Titch, you're so right. I took three Fiorinal tablets a day for about 2 months, and I felt like even my doctor thought I was abusing them. Thank goodness my migraine went away and I'm back to a much more reasonable 3 or so a week. But sometimes the only thing people can do is to take pain medications, and it's absurd that so many people jump to conclusions.

gerbo
9th December 2005, 09:21 AM
Originally posted by tonibunny@Dec 8 2005, 07:14 PM
Sorry Gerbo, my real name is Toni - I thought everyone knew that, but obviously I shouldn't have assumed so!


I suppose I could have worked that one out myself,:idiot: but some others are quite hard to work out or just impossible. And on the one side you want to be able to call people by their proper name, on the other side, everybody should be entitled to their privacy/ anonimity

Re hangover with amitriptyline; have you tried a slightly lower dose, or taking it earlier? There might be other drugs in the same category but with less side effects?

gerbo
9th December 2005, 09:34 AM
Originally posted by Little Ali@Dec 8 2005, 09:28 PM
I'm on 20mg Fluoxetine (prozac) per day for depression/anxiety and I've read that Tramadol shouldn't be mixed with it as it can increase the chances of convulsions!! My GP knows what medication I'm on, so I'm wondering why he gave me the Tramadol and how high the chances are of me having problems with mixing the two? :rant: I'm starting to despair slightly as I can't cope or function properly with the pain I'm regularly in! Anyone got any ideas?!!

Some thoughts

1) If youare taking prozac and it not helping for your depression, ask for an alternative
2) Ask your GP if he is aware of the interaction between tramadol and prozac
3) If you despair, follow Toni's advice re painclinic

gerbo

gerbo
9th December 2005, 09:46 AM
Originally posted by titch@Dec 8 2005, 08:02 PM

I actually had a stand up row with the last locum I saw, who was quite determined, despite my history of needing tramadol and codydramol ever since revision, that he was not going to prescribe it to me. I made my displeasure at this fact very clear, and he implied that I was abusing.
I think some doctors get very worked up about what they perceive to be the addictive potential of opoids, although actually (and i think interestingly)there is quite reliable evidence that opoids taken for pain are not or hardly habitforming/ addictive, and it should be quite easy to come off them if the source of the pain is gone. Ofcourse it is different if the same opoids are taken for pleasure, not easy to stop them then.

tonibunny
9th December 2005, 10:20 AM
Originally posted by gerbo@Dec 9 2005, 08:21 AM
Re hangover with amitriptyline; have you tried a slightly lower dose, or taking it earlier? There might be other drugs in the same category but with less side effects?

I started off with 25mg of amytriptyline and worked up to 75mg because the lower dose doesn't help at all, and I take it at about 6pm every night. It doesn't make me sleep like it used to, just makes me very dozy and vague all the time :( If it didn't reduce the tension in my shoulder muscles I wouldn't bother taking it, and when I get back to work I will stop taking it because it makes it so hard to concentrate on anything.

Little Ali
9th December 2005, 09:44 PM
Thanks for your messages guys.

Toni...did you have any side effects of mixing prozac with Tramadol.

Gerbo...the prozac does help and I've had CBT as well, but pain just brings me down, as does the thought of not doing my job properlydue to being completely out of it and/or having to take time off due to appointments :hammer: Although, I have to say, my boss is very understanding :-)

mark
10th December 2005, 07:38 PM
Hi Ali, sorry to hear in so much pain and having tio take so many pills to control it. I hope things get better you in the new year

amytriptyline's a nasty drug i was on that for depression i was on around 140 mg a day (if i remember rightly) and it took about 6 months to get over them hot cold sweats dry mouth trembling aches and pains

*shudders and hopes if i need antidepressants again i will ger prozac*

Valiums nasty stuff

Little Ali
12th December 2005, 09:43 PM
Hi everyone.

Just thought I'd give you all an update! I finally tried my Tramadol today. Lol to think that my GP was worried about me getting addicted and I was too scared to take them in case they turned me into a zombie or I had some nasty reaction!

The good news is...it seems to be working :clap: I took some Paramol earlier today, which didn't work and I was having a lot of nerve pain and couldn't think straight so thought I'd give the Tramadol a go.

The other good news is that I haven't had any reaction to taking them at the same time as my other stuff :bounce: (Fingers crossed I'm not speaking too soon)

titch
13th December 2005, 12:37 PM
I'm sure that the fact much of my pain is nerve pain is the reason that tramadol works so well for me. I'm really glad that it worked for you! :D

mark
14th December 2005, 01:03 AM
Don't know how much relevance this document has but its worth a skim

http://www.ama-assn.org/ama1/pub/upload/mm/455/pain3.pdf

gerbo
14th December 2005, 12:04 PM
there appears lots of relevance in that one, will take a bit to get through though. It looks good, so added it to links at the top of the forum

gerbo

Little Ali
14th December 2005, 09:52 PM
Thanks Mark!
I found that really interesting.

mark
15th December 2005, 04:16 PM
The power of Google :-D

Little Ali
31st December 2005, 12:03 AM
Hello fellow wonkies!

I went to the GP today to ask about painkillers and the effects of mixing them with Fluoxetine. Apparently, if anything, it would make any painkillers I took more potent. So...that's not the reason why Tramadol has been taking so long to work. Like some of you have said, nerve pain just takes a while to stop (ooooh but when the Tramadol works it's great!!)

I've been advised that taking Ibuprofen in the morning as a routine, rather than waiting till I'm in pain would be better as it would stop the inflamation which causes the trapped nerves in the first place, Anyway, I'm a bit dubious about taking Ibuprofen everyday, but I'm gonna try it for a week and see what happens.

I'll keep you posted...

Kayla
31st December 2005, 05:03 AM
If the doc thinks taking Ibuprofen everyday wont harm anything then I wouldn't worry.

titch
31st December 2005, 12:20 PM
I was on 2400mg/day for 2 years before revision, under doctor's supervision. The only reason supervision is needed for higher doses like that is to monitor your kidney function. Just make sure not to take it on an empty stomach - it may be less of a stomach muncher than most NSAIDs, but it can still have a good nibble if you're not careful enough.

The effect of it building up is not to be underestimated - trouble is because it's slow, and pain is subjective it can be difficult to realise that it really is helping. Of course, it may not be as well suited as other NSAIDs as there is an individual element to it, but it's certainly worth a try and if it helps even just a little when you take it because you're already in pain then it should help as a preventive measure :-)

*hugs* and hopes for relief!

Little Ali
1st January 2006, 05:45 PM
Thanks! :squeeze: and Happy New Year!

Blair
6th January 2006, 01:55 PM
I wouldn't worry about ibuprofen. I have been on it long term (since before my op). I had some stomach irritation before my op, but I think I was having stomach trouble just from being stressed out and upset a lot.
Currently taking 6400 mg per day with no ill real effects. It does help me stay comfortable, and your doc is right. It's far more effective to take it preemptively than to fix a problem after it starts. I always take 2400 mg about an hour before my shifts at work, and then take more on lunch break, and it works far better than when I start my shift unmedicated and then medicate on lunch or a break.

gerbo
6th January 2006, 02:09 PM
6400???, that's a lot for british standards (2400/day is maximum)

Blair
6th January 2006, 05:47 PM
Yup. It's a lot... but my Dr doesn't know what to do with me otherwise since I won't take narcotic pain meds... I work a job not well suited to my back, but quitting isn't an option until I find something else. Mucking stalls and grooming horses, I was going through 2400 mg a day tops, usually less. Who would think that being a barn grunt would be easier than working in a department store?

titch
7th January 2006, 12:04 PM
It's not the stomach that's the issue with ibuprofen really Blair - please, please make sure that you get *regular* kidney function tests, especially given the damage that you had to one of your kidneys from the accident. It really is absolutely essential.

While I don't blame the ibuprofen for it, as I was not taking much at the time, I had a kidney issue which got the airy-fairy diagnosis of being "oh, it's either stones or an infection, here have some antibacterial drugs in case" It was quite *the* most excruciating thing - give me major spine surgery in preference to that! I was having a bad time with my neck (and had what I believed to be a nasty muscle spasm in my lower right back which I thought was from trying to protect my neck) and it was a Monday night and I had several meetings, one especially important, on the following day, so I dosed up like heck to try to make sure I'd sleep well enough to get through the day - 2 tramadol, 2 codydramol, 800mg ibuprofen - hit the pain from every angle available to me, and it had worked on the few occasions I'd done it before. That's an awful lot of painkillers really, certainly when you consider that I normally take 1 tramadol + 1-2 codydramol or if I'm on a nasty bed away from home, it could be 2 tramadol (and even that is a moderate dose).

That was about midnight. I woke up at 2 am with desperate need to go for a pee, and in the most astonishing amount of pain - my neck was fine, everything was fine and lovely except for this appalling pain drilling in from the back of my waist, like nothing else I'd ever felt.

As mentioned above, I never did get any sense out of anyone as to what it was. I toughed it out overnight rather than call an ambulance or even a taxi and go to casualty, and rang NHS Direct at about 6.30am. They insisted I had to go to a local doctor asap rather than going home and seeing my own doc in the late afternoon, so my uncle (who is elderly and ill needing regular tests of all sorts) gave me a spare sample pot he had and off I went, armed with sample. I was kept waiting over an hour then fobbed off on a practice nurse who needs her license revoked. She tested the sample, which was positive for blood and insisted it had to be that I'd started my period and just didn't know it yet. She also insisted it was impossible for anything to be wrong with me internally, that it was all because of my back and that I must go back to QMC immediately and they should deal with it. Ill as I was I basically refused to leave until something was done about it, that either they figured out what it was, decided it was stones and gave me better painkillers, or gave me antibiotics, so she eventually went to talk to a doctor saying that there was no way I'd be written up for anything (and implying I was a drug seeker - possibly the fact I was in a state of cold sweat and gritted teeth enhanced this idea for her), and came back very shame faced with a prescription just seconds later, and instructions that I *must* go to see my doctor a week later to have another check up to see if there was still blood and get urgent further treatment if so :rant:

In any case, the worst of the pain cleared up within around 24 hours, whether by the grace of stone passage or antibacterial drugs I don't know. It was a while before I took ibuprofen again, simply because I feel, and function, much better on codydramol for most kinds of pain, but do find ibuprofen better for some things. When I next took it, I ended up with pain, nowhere near as bad, in the same place. Didn't make the connection. Took some more a couple of days later, same thing - started to realise a pattern. As it is now, 18 months later, I don't get any pain on the rare occasions when I've taken ibuprofen, and I still don't actually know what happened or whether the ibuprofen is actually damaging to me still. I do know I'm too scared to use more than a very small amount of it, and given that the worries over it are always to do with kidney damage I'd really urge anyone taking it at large dose to be very careful. My suspicion is that I'm just prone to minor kidney stones, and that the ibuprofen maybe aggravates the pain of this by changing local chemistry, rather than doing any particular damage. Even so, I've no plans of making it my primary painkiller ever again.

Blair
9th January 2006, 03:37 AM
Question for you- what would you say "regular" would be... Every few years? A couple times a year?
My GP isn't good for a whole lot- very "hands off". OK with normal stuff like colds, kidney infections, pneumonia, etc... But beyond treating the common ailments, he's a little lacking. But I stick with him because he's good for those days where you're sick as a dog, and if you wait a week to get an appointment to see your DR like most other places have, well, they're absolutely no good....

gerbo
9th January 2006, 09:17 AM
Originally posted by titch@Jan 7 2006, 11:04 AM
My suspicion is that I'm just prone to minor kidney stones,
did you ever had an ultrasound of your kidneys? Might help to clarify.

gerbo
9th January 2006, 09:19 AM
Originally posted by Blair@Jan 9 2006, 02:37 AM
Question for you- what would you say "regular" would be...
ask your GP, once or twice a year seems reasonable to me

titch
9th January 2006, 10:10 AM
Blair, I'd think in terms of twice a year with the level of it that you're taking. You should probably get liver function tests at the same time, just because if they're drawing blood anyway they might as well :P It just pays to be aware of these things so that hopefully you catch any issues before they become especially problematic. Despite the fact that most pharmacists here get hysterical if you are on more than 1200mg, even when prescribed, I think it is unusual to develop serious problems, but prevention is always better than cure :-)

Gerbo - I've not had any further investigation. Really it's a question of how much I can be bothered and how much I'd press for. I just get fed up with these things! I've got the whole back thing (the scoliosis, the surgery, the flatback resulting from it, the surgery for that, the severe cervical degeneration secondary to the flatback [verdict from the doc I saw about that: come back if you suddenly develop torticollis and I'll fuse you], and now the central and bilateral foraminal stenosis at L4-5 that I'm about to have a steroid epidural for and will probably end up having further surgery for), there's the thing since childhood that has variously been diagnosed by my old family GP as "idiopathic inflammatory joint disorder" (which he said "means we know something is wrong, but we don't know what and if you're lucky it'll never get bad enough that we find out"), by other GPs as hysteria and hypochondria (with suggestions of Munchausen's because I've had a couple of surgeries), and by my current GP as "your ESR is raised and you have symptoms of some kind of autoimmune disorder, the question is at this stage how much grief is it worth to you to investigate it further" (we decided to take another test 3 months later and unless it was at least as high, if not higher I said I couldn't be bothered to investigate - luckily, although it was a long flare it passed). Then there's the familial hypercholesterolæmia and hypertriglyceridæmia and arrythmias, and probable PCOS (they've tested as far as raised androgen levels and as they weren't definitively raised, just high, investigated no further despite a slew of other symptoms). Luckily I don't seem to have any of this severely as such, but it really makes me fed up with dealing with doctors! I'd spend my life in hospitals if I got them to investigate it all thoroughly :lol:

gerbo
9th January 2006, 12:44 PM
interesting, isn't it, how it is easier to advice others, then to consider your own health. Can see where you're coming from though, and where this apparant fedupness and "wanttostayawayfromdoctorsasmuchaspossible" stems from.

I am sure you'll know best what is right for you, I would have thought it would be nice to get confirmed that there is no significant problem in your kidney and that it is working well. Saying that, if you haven't had any problems for a long time, suppose you can afford to wait and see for a bit

(Ps, your wedding pictures looked lovely)

gerbo

tonibunny
9th January 2006, 01:23 PM
Careful Titch. This is how I ended up ignoring endometriosis for well over ten years before finally seeking treatment for it. Even though I was having to be taken to hospital nearly every month and put on morphine to lessen the pain, after all the problems with my back I really couldn't hack having to see doctors and go through a bunch of tests and treatment for yet another problem....and well, even though the pain was so severe, I knew that just being pumped full of morphine would stop it, so compared to my ongoing back pain etc I kind of saw it as being managed successfully! :-o This wasn't helped by the hospital not mentioning to me that I really ought to get it checked out - it wasn't until I got taken ill in Newcastle and Sheffield that a medical professional actually said "get this looked at asap!!".

Anyway after years of severe internal bleeding they found that the resulting scar tissue and adhesions had stuck all of my abdominal organs together and my insides were a big old mess. I wouldn't have had extremely severe endometriosis at first (the pain is more likely to be from adenomyosis), but I left it for so long that the scar tissue just built up and up. I guess this was a bit of a wake-up call as far as the pain syndrome went - cos I realised that it is NOT a good idea to just ignore things and try to live with them if it's obvious that something is wrong.

It's always really worrying though that GPs will see you as a hypochondriac. I've had all sorts of different responses to the fact that my heart will suddenly start racing at rest - I can be sitting quietly at the PC and it will start racing at 130bpm or more - yet where one GP told me to go to casualty for an ECG, another told me that it was nothing to worry about and was probably prefectly normal for me. I don't feel that it IS normal, but I am nervous about asking for even more tests when I am already being seen by specialists at the pain clinic, gynaecologist etc. Oh well, I have just moved GPs, to hopefully my new one will be OK about it!

Oops sorry to ramble....

Toni xx

titch
9th January 2006, 03:15 PM
In all honesty? Yes. I actually would like to get the whole damned lot checked out and treated where necessary.

Especially I'd like to get treatment for the PCOS - it's all very well to say, as the doctors do, "Oh, the symptoms get less when you lose weight". That's true enough - I went about a year with no periods and when I lost a little weight they started up again (classic PCOS stuff). But PCOS makes it nightmarishly difficult to lose weight at all, and when you do it's very slowly, and doesn't respond well to diet generally requiring a lot of cardiovascular exercise. Guess what? That's darned difficult with the state of my back. The standard advice is to swim..... I can't. Yes, I know how, and no, I don't care about showing off the flab and the scars - I physically can't because of the stenosis. Crawl and breaststroke both need you to arch your lordosis further - which closes the nerve root exits and in my case, with them being so small now, pinches the nerves and backstroke aggravates my neck!! I'm better off pulling a few weights and spending 10 mins on an elliptical machine, it might not do much for me but at least it doesn't hurt me.

I'm actually pretty sure that the PCOS and the autoimmune thing are intimately linked - when one plays up, so does the other. Given my androgen levels are raised, and I feel so much better and get fewer flares when they're not, it seems a fair bet that treating it would help everything. When I've been on Dianette, I've been so much better - lower blood pressure, no acne, better joints, no eczema, more energy, slimmer etc. There's no way they'll let me go back on it as it stands though, because for some reason they hate to prescribe it, and also it can be problematic for the liver. And I've been testing as raised Gamma GT. Oh joy.

Trying to get any kind of holistic approach is almost impossible. So right at the moment, as we have to be careful for 2c as well (he's become very sensitive to high GI foods), the plan is to get back to the gym and eat well and take good care of ourselves and see if it makes any difference.

I do go to the doctor if I get scared - the blood test that showed the ESR to be raised came about as a result of me going to the doctor because I felt truly appalling with a flare that had got worse than normal and also had lasted longer than normal and was still ongoing - so any change and I do press for testing. Really though, it's been made quite clear to me by various doctors that I'm a burden on the NHS specifically and the country in general and that they're just not willing to do anything :rant:

My GP is a lovely guy, and I'm really lucky to have him, but it's the consultants that are more of a problem. There was the "come back if you develop torticollis" guy who had no idea that artificial disks were even available, and couldn't grasp the fact that you're supposed to get them done _before_ it's bad enough that fusion is essential (by the time it's that bad, it's unlikely they can fit a disk for heaven's sake!). There's the respiratory guy I got a referral to to ensure I was fit enough for the salvage surgery - who told me that scoliosis cannot have a negative impact on the lungs of an adult, contradicted everything I said, wasn't in the slightest bit worried that they'd lost my test results or that those results had shown that although my actual volume was not problematically low, my oxygen uptake was unusually poor, and basically just didn't have the slightest interest in any of it. It seems to me that a referral to the local hospital just isn't worth the time and effort unless it's something acute where they have no choice but to deal with it.

I am contemplating researching endocrinologists to try to find a decent one and get a private referral, to hopefully then hop on to the NHS list if they think there is anything they can do for me. I'm sure I could get my GP to refer me to the local so-called specialist, but I just don't think it will be worth it.

(thanks Gerbo :-) Good photographer and hairdresser are very much to be thanked for the photos looking good ;-) )

gerbo
9th January 2006, 03:44 PM
Have alook at these, if it is of any use

http://www.patient.co.uk/showdoc/23069147/ and http://www.patient.co.uk/showdoc/40001658/

gerbo

titch
9th January 2006, 04:58 PM
Thanks for that - those are really good articles! The second one is especially interesting as although the hirsutism is mild, it's in the exact places listed. Thank heavens I'm naturally blondish and fine haired..... The fact that it seems linked to the lipid problems is something which makes it well worth trying to get sorted - statin treatment just does not appeal to me, I have an intuitive distrust for it in my case, probably because I've always felt it is not a condition in itself for me, although it may be for others.

sins
9th January 2006, 06:24 PM
Really though, it's been made quite clear to me by various doctors that I'm a burden on the NHS specifically and the country in general and that they're just not willing to do anything

Remind said doctors that you're also a contributor to the NHS as you, your husband and your parents have paid your taxes all your working lives.
I fell ill with a chest infection on new years day and passed the infection to my son who also developed an ear infection.So far I've spent €95 for two gp visits,and approx €107 on prescription medicines.Total €202 and it's only 10 days into 2006!!!! :soapbox:
I'm one of the people who is terrified to take any medicine in case I'm one of the rare ones who has a rare severe reaction to anti imflammatories.I can practically guarantee that I would have either kidney or liver failure :D Basically I'm jinxed...
Which is why I'm horrified at Blair's dosage of ibuprofen.
I take mobic if my neck gets too sore, it works quickly and efficiently for me.I stop taking it the moment the flare up passes.
One of my work colleagues takes NSAIDs for rheumatoid arthritis and has quarterly liver and kidney function tests.Luckily as one medication didn't suit him and caused significantly abnormal liver function tests.
I guess there's no easy way to deal with a patient with multiple health issues.Certainly Titch an endocrinologist might be of some help to you, but I'd imagine no guarantees.
Sins

gerbo
9th January 2006, 06:46 PM
Originally posted by sins@Jan 9 2006, 05:24 PM

Really though, it's been made quite clear to me by various doctors that I'm a burden on the NHS specifically and the country in general and that they're just not willing to do anything*


that's really horrible if they make you feel like that and might be more a result of their impotence in helping you properly, than your perceived "overuse" of the system

you could remind them that without people using the NHS they would be out of a job in no-time

Thaleias spirit
9th January 2006, 10:13 PM
Every 6 months I get my thyroid levels checked and from time to time she also checks Kidney & Liver, Calcium, Diabetes (as this can develop at any stage in life).

The reason probably being that in the past two years my medication levels have changed, a lot. I went from being just on Thyroxine and for pain relief the occasional over-the-counter pain relief and/or Distagesic. In two years I've added Calcium and Vitamin D supplements, 2 inhalers, anti-inflamatories, and stronger pain relief.

I try not to take pain killers unless it's totally necessery. Unless I'm at work or out walking I tend not to use them. If I'm at home I'll just rest and if I really have to I'll take one tablet then. About 5 months ago I went through 3 months of chronic pain and I crie dso much. I also took a lot of time off work. I only changed how I did things becuase I had kept a pain diary and could see the pattern and realised I had to totally slow down. It's made a difference.

For me the pain when it does hit, it's hard and fast. It can make me feel extremely sick and no amount of pain relief on a bad day can mask it.


Oh and any doctor who tries to be funny in aying Im just so unfortunate to have all these issues .. I've always done as Sins pointed out .. Remind them, in such a sweet but knowing tone, that I keep them all in a job. 8)

They never have much to say after that :spin:

Joy
12th January 2006, 06:16 AM
Toni - does your heart race when you are in pain (or more pain than normal). That happens to me. My heart rate is pretty high even though I am quite active and sometimes I notice my heart rate increasing before I notice that my pain level had increased. I understand why you don't want to mention it to your doctor, I don't want to ask my surgeon about my pain anymore because i ahve been dismissed so many times, and I don't want to seem like I am just looking for attention or a sissy or something like that.

I also try not to take painkillers but sometimes I HAVE to take something to get through the day or to sleep at night. Usually I find ibufrofen works best. I am scared of getting addicated or doing damage to myself though, so I try to deal with the pain by staying active (helps with some of the muscle stuff) and heat, ice, deep breaths, basically helps. I am quite frustrated because my surgeon is sure that 'scoliosis doesn't cause pain' and the physio I saw informed me that my back 'isn't flexible enough'. Which of course wouldn't have anything to do with my fusion. Nope, nothing like that. *rolls eyes*

butterflylr
12th January 2006, 08:36 AM
Joy, you said my exact thoughts only minus the part about fusion since I've never had surgery. Glad it's not just me.

titch
12th January 2006, 03:31 PM
It's amazing how many of them fall into the "it's not painful" thing :rant: I know a lot of people do not get any pain with their scoliosis, but in fact if you read some of the abstracts of more recent papers they're increasingly saying things along the lines of many adolescents being diagnosed *because* they have gone to the doctor regarding back pain and that the frequency of back pain among adolescents with scoliosis is higher than those without.

On a different note, I had to see a GP yesterday to get another round of antibiotics to shift this stubborn chest infection, and it was one I'd not seen before. While I was there I requested a repeat of Tramadol as I was nearly out and it'd save me dropping in a request and having to pick it up. I was due for review in the middle of March, but she printed off the prescription and said "Oh, by the way, I saw you were due for review in March, but I've extended that for a year." I thanked her and said I supposed she could see that I wasn't taking any more now than I was 3 years ago, and she replied "You're clearly under-using, so there's no problem at all." :-o So there are good docs out there - just wish I didn't need them at all, but the only way to cope without would be to stop working so that the lack of good sleep wouldn't matter, and inability to concentrate because of pain wouldn't matter. And to think that after my first surgery I refused to take painkillers once I was out of hospital, and still had much of my supposedly 1 week supply 8 weeks later!

I'm so frustrated for you that you can't even get any decent investigation of the issue, Joy :woe: It can be very difficult to track down the cause of pain of course, but in a fused spine it should be easier, especially if the pain is occurring within the fused regions, as typically immobile areas don't hurt unless there's a specific reason like a nerve being pinched or whatever - and if it's not in the fused area it should still be easier to figure out what it is if the pain is different to pre-surgery pain. I think the docs often find it very frustrating with people who are not fused in that unless the pain is high enough to make surgery a necessity, there's always the balancing act that you can end up with different pain instead, so the question becomes one of whether the risk is worth the potential benefits.

Little Ali
12th January 2006, 10:13 PM
:rant: 'Scoliosis doesn't cause pain' my arse!! Some people just don't have a clue do they?!! :idiot: Until recently, I used to try not to take painkillers until I was complete agony cos I didn't want to get addicted. However, it's a bit late by that point cos you can't concentrate on anything! Apart from anything else, it's not good at work cos you end up doing things wrong or not doing them at all and wanting to shout at people!

Now I've decided, if I'm in pain, I'm gonna take painkillers, After all, it's only a short-term solution and I'd rather be comfortable.

That's how I see it anyway

Mac
13th January 2006, 07:34 PM
Sorry to be a bore..., but getting back to the dosage of Blairs ibuprofen. Do you mean 6 x 400mg per day and not 6,400mg as it reads, because that would then be the max dose of 2.4G daily, which would be ok.

Little Ali
13th January 2006, 11:58 PM
Hi Mac! I see you're new! :welcome2:

Mac
14th January 2006, 02:46 PM
Hi Ali,

Yes i am new and am just finding my feet on this site. I think its a great way for everybody to discuss their problems and give advice to people who have been through or are going through the same thing.
Keep up the good work and hi to everybody else out there. :wave:

titch
15th January 2006, 11:55 AM
:welcome: to the madhouse Mac! :D

BarmyArmy
16th January 2006, 12:37 AM
Welcome to our family Mac :spin:


I'm an out patient at the pain clinic in our main hospital in Dundee and I've very glad that I am. My nurse there is very helpful and has made a big difference to my life. I started on a small dose of Tylex painkillers when I was about 17 but quickly ended up taking 2 every 4 hours because my pain was so bad. This wasn't good as when I take a lot of them I get hit with a lot of side effects. They either make me woozy, sleepy or very giggly. When I was 18 I was finally sent to see a consultant at the hospital who refered me to physio and the pain clinic. My nurse at the clinic gave me a TENS machine and I noticed after a while I wasn't so dependant on the Tylex. I then ended up taking them just when I needed something for the really bad days, well that was when I was at college.

I know for a fact that if I didn't have my TENS I would be on more painkillers. But after a few years of working my pain became worse and now I have to use my Tens and a combination of 6 Methacarbomal (sp) which is 2 tablets 3 times a day and either 2 or 4 Tylex as well.

I take a lot pills, I really wish I didn't but sadly do need them :woe: I worry what they are doing to my insides and I hate when I feel woozy from them when I've had a lot. But I've been on them for a very long time (Tylex for 12 years and Methathingies for about 2 of that) and I think I may be on them for a lot longer.

butterflylr
16th January 2006, 07:36 PM
I also have a tens machine. I like it okay but I always find it hard to stick the little things on my back all by myself. I used to have it done for me at the chiropractor plus theirs was a super nice one. It always felt so nice, almost like a little massage. :D

Blair
17th January 2006, 05:33 AM
Nope Mac... I mean actually 6400 mg (8x 800 mg)

Joy
20th January 2006, 05:27 AM
Blair, doesn't that tmake you sleepy? I can't take more hten 400 mg with out getting sleepy.

Jonny
20th January 2006, 05:28 PM
I don't get sleepy on NSAIDs - they're supposed to be free from narcotic effects :-? although things like the colouring and preservatives might have an effect. The red stuff on some ibuprofen can trigger either a huge high or an allergic reaction...

but 6400mg is a very, very scary dose.

Blair
20th January 2006, 06:28 PM
nope, I don't get sleepy either, though my prescription bottle states that drowsiness can be a side effect.... The only side effects I think I've noticed is that if I've had to be on that high a dose for several days out of the week for a couple of weeks (usually for work purposes), I don't clot well if I get a cut, and I bruse more easily than normal. I try to kind of balance things out in the long run. If I'm not working, or don't have to sit in class too much, I don't take any at all.... A half shift, I allow myself 2400 mg for the day.

Joy
24th January 2006, 06:59 PM
That is good Blair..... I wold be scared to take so many painkillers, but I can understand why you would need to! Last year I had to take Celebrex just to get through my exams. Sitting in one position for hours killed my back!

gerbo
24th January 2006, 07:36 PM
Originally posted by Blair@Jan 17 2006, 04:33 AM
Nope Mac... I mean actually 6400 mg (8x 800 mg)
you seem rather laid back about it, but this dose is far, far beyond what would be considered safe in the UK, and I am not aware of different recommendations in the rest of the world. Are you sure you have been properly advised on this by your doctor?? Be interested to be pointed towards references indicating it is OK to use that much.

gerbo

Little Ali
26th January 2006, 11:07 PM
That is loooooooads Blair!

NSAIDs don't make me sleepy ether, which is always good!

I recently discovered Nurofen Sustained Release for bsck pain, which I've found much more effective than any of the other over the counter stuff I've tried. I still have to resort to the old Tramadol or Codeine id it's too bad but for mild to moderate pain, it seems quite good.

gerbo
27th January 2006, 09:13 AM
recently discovered Nurofen Sustained Release for bsck pain

ask your GP to prescribe it (Ibuprofen modified release 800mg) will be cheaper for you I would have thought. These "specialities can be horrendously expensive if bought over the counter

titch
27th January 2006, 11:10 AM
:-o I know it's back when I had rubbish GPs (well, there was one good one and the rest were diabolical for anything and particularly pain management - example: I can't take enough co-proxamol to deal with my pain. Yes you can, you can take up to 8 per day. I know, but you only prescribe me 100 per month, and I need at least 4 per day, often more. So, take 4 per day. I can't unless you prescribe me more. But you can't have more than 100 per month. So how am I supposed to take more than 3 per day? Of course you can take more than 3 per day, you can take 8 per day if you need them.....), but they told me that there was no sustained release option other than Diclofenac. I never had any idea there was a sustained release ibuprofen other than the Nurofen one which I couldn't possibly have afforded in the quantities I needed, not to mention I'd have been scooting round from pharmacy to supermarket and back again trying to circumvent the laws on sale quantities :nut:

gerbo
27th January 2006, 12:34 PM
of course there are also preparations which are meant to be taken once a day, which can be very effective, meloxicam 7.5 or 15 mg od being one of them

As I understand it chronic pain exacerbates itself, so shortacting preparations, in which pain comes back again and again can be very counterproductive, whilst longacting preparations would help much better

titch
27th January 2006, 03:53 PM
It was from reading stuff on the various forums and doing some research based on it that I became so determined to keep my pain under control as far as possible, precisely because as you say, chronic pain does exacerbate itself. I really didn't want to end up in the sort of state that I could have done - I think I've been lucky as well.

Something that may amuse those of you who deal with pain..... I injured my knee on Saturday - I was ambling along, minding my own business on a perfectly flat street, heading back to the car with 2c, when I suddenly felt a rip in the front of my knee, and very nearly fell over because my knee gave at the same time. I was able to walk still, so I decided not to worry about it, but by the time we got home it was rather swollen. It got harder and harder to use, but I thought it would be better after a good night's sleep. In fact it was worse, and I ended up going to A&E. The triage nurse asked me what I was taking for it, and I said "Nothing" - she looked pretty startled and queried that, and I replied "Well, it's not the sort of pain you take painkillers for, is it", and she just looked at me like I was an alien :lol: All I wanted was to get an idea of whether anything serious had happened - turns out I partially ruptured the patella tendon. It's now Thursday, it's a lot better, and I haven't felt the need to take any additional painkillers for it because it didn't hurt while I was just sat around, and previous experience with knee and ankle injuries that only hurt when they're moved has shown that for me, there's no benefit from painkillers because it *still* flippin hurts every time I move it. She just didn't get it :lol:

sins
27th January 2006, 04:12 PM
of course there are also preparations which are meant to be taken once a day, which can be very effective, meloxicam 7.5 or 15 mg od being one of them


I can vouch for meloxicam, I have taken it for flare ups of neck pain.It works so very quickly and is easy on the stomach.I usually just take it for three or four days and then stop when the flare up passes.My Gp reckons it's been around a long time and is generally safe to take.
Sins

Mac
29th January 2006, 07:59 PM
I was given meloxicam 15mg od back end of last year as an alternative to motifene 75mg bd {diclofenac} and I had a real burning nauseous feeling just above the stomach area, about a week after being on them, I knew instantly what it was and was put back on the motifene which I take when needed, together with paracetamol.

Little Ali
1st February 2006, 02:27 PM
Thanks for the advice everyone. I'll ask my GP although Titch's situation sounds very familiar so I'll see whether I have any luck!!

Titch-I love it when you shock people like that!

Blair
5th February 2006, 04:51 AM
Well, for those who were fretting over my ibuprofen dosages.... I'm off it... All the sudden it is doing absolutely nothing for my pain levels. So will be going to talk to my GP sometime this week to see about switching meds...

Little Ali
10th February 2006, 10:18 PM
Why oh why did my Tramadol and Ibuprofen take 4 and half hours to kick in?!! :nut: :mope: I am sooooo tired!