Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group to control pain reduce tramadol!!??

Hi
I just wondered if any of u have any suggestions on this.
I went to see my pain consultant today, had another epidural painkiller injection. I presented him with the list of medications i am taking and told him i thought it was getting a bit ridiculous. He then said to reduce the amount of tramadol from 8 a day to 2-4 when i told him i was on the codeine as well because the tramadol wasnt touching the pain! Before the flare i was on 2 - 4 a day! Flare started had to go to 8 (max dose) I dont understand this logic!
He told me to keep taking the muscle relaxant, i told him i had to cut that one back cus i was falling alseep and i need to work. He told me not to do that and to stop taking the carbamazapine which is for the nerve pain in my legs and the wicked pins and needles that keep me awake crying when they get bad!? I have tried before to come off them.
I am now faced with a decision that i am not sure whether its worth putting myself thru. Do i try his theory and prove him wrong? (would b nice not too but the chances of that r not looking good ) or carry on listening to my body telling me i am in a lot of pain and throwing what feels like a ton of painkillers down my neck everyday.
If my thinking is off track here any suggestions would b greatly appreciated.
take care
heather

I have no sugg. concerning following his advice and cutting back-don't know enough about it BUT... if I were to try it myself, I'd choose a weekend when I don't have to go to the office and experiment that way on my own time-just a thought.

It sounds like you are on a lot of different meds. I would think that the pain specialist would know what he's talking about, after all that is his speciality, right? However as we know that's not always the case. I may have mentioned before that you can start to get a rebound effect when taking pain meds for headaches, and I would think it could be the same for any pain meds, but I don't really know for sure.

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Triggered by abuse of headache medication, rebound headache pain is an example of the cure becoming worse than the problem. Reaching a point of diminishing pain relief returns with prescription drugs is a common phenomenon which will be discuss later in this article.

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Excessive use of aspirin, acetaminophen and ibuprofen create what is called analgesic rebound effect in which the body creates more headache pain so it can receive a larger dose of drugs. In other words, an painkiller addiction has been created. Drug use can also alter serotonin levels in the brain which are linked to migraine attacks.

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I'm sorry you're in so much pain. Have you tried biofeedback? That might also be something worth looking into.

Do you have any sick/vacation days at work? If so, you could take a block of time and work with your dr to see if it would help any to get off of some of these. It might not be easy, but might be worth it in the long run. I'm not saying this is what you should do, only you know what your situation really is. I'm certainly not a medical expert of any kind, just threw this information out for you to evaluate and decide if it's worthy of thinking about.

Good luck, and keep us informed of how you're doing.

Hi Heather

I don't know if it helps but I'm in a very similar position to you. I'm also taking around 800mg per day of tramadol and its all I can do to keep any semblence of a normal life.

The reason why your pain specialist (and any other doctor you mention to) is freaking out about the tramadol is because (in britain at least) the maximum dose the drug company says it can be used at is 400mg. So you're taking double the recomended dose. Now, as I understand it the drug company is saying that as far as possible, this drug is safe up to 400mg. A doctor (like mine) can prescribe more than that (in the UK anyway) but if anything goes wrong they can't blame the drug company. I think, as well as being worried about your health, your doctor is worried about getting his [**BLEEP**] sued.

The UK is nowhere near as litigeous as the US. Our courts just wouldnt entertain the sorts of people who are just trying to get money via some absurd claim.

So anyway, here's what I did.

As much as I would like to reduce my dose, I can't. I've tried. It just causes to much pain. It's unbearable. That should be enough for your doctor.

Like yours, my doctors took a bit of persuading and whenever I told them the dose I was on they would grimace and hum and ha and make a fuss. However, basically I convinced them that it was the only option. And I'm pretty much certain that it is.

I told them, in no uncertain terms, that Tramadol is my lifeline. If I didn't have tramadol, I would be disabled. I would be bereft. Living on benefits, depressed and in pain left to rot until I die. And I would rather kill myself. (I didnt say that bit but I think it was probably implied).

So I said to the doctor - Look. I know that taking this much Tramadol is far from ideal. But it is the only thing thats helping me get through life. I don't want to have to depend on it, but then a diabetic presumably doesnt want to be dependent of insulin. They just are.

If you stop me taking this pain killer, I will be left with only two options -

1. Doing absolutely anything in my power to self medicate. By that I mean becoming an alcholic and dying of liver failue or resorting to illegal drugs like cannabis or the more powerful opiates like heroin. People in intolerable pain will self medicate in absolutely anyway they can just to survive. Make that clear. They must see that taking a large dose of a controlled, and legal medicine in a clinical and controlled way, where doctors can monitor you and help you is far better than the alternative root to survival.

2. Die

Now which is the better situation

Not taking the drug and either being left to rot in agony, or being forced down an illegal or alchoholic path of addiction and dispair just to survive
or
Taking a whopping dose of the drug and accepting the consequences

Given that I just couldnt live out option 1, I readily accept option 2. There really is no contest. And the thing is, I believe unreservedly that that should be my decision to make. I mean its not the bloody doctor whose left writhing in agony. He should explain the cons of taking that much of the drug in an unbiased way, and then you should be free to decide, once you have all the facts.

So, I know that was a bit of a spiel, but in essence -

- Just lay it on the line for them. Straight up tell them that its the only thing thats keeping you alive.

- Explain to them what you will have to resort to just to survive if they don't help you

- Convince them that you understand their concerns. You know its not great, but its your only hope. This one is important. If you can convince them that you truly appreciate what they are saying and that you are not just abusing your pain medicine I think they'll be far more open to the idea that you know what you're talking about and you want to make an informed choice about how you want to live.

Any doctor worth his salt will take that at face value and help you.

I hope at least some of my inarticulate ramblings help. At the very least you should know that you aren't alone. My situation is strikingly similar to yours and if you ever want to talk and share stories then always feel free to contact me. If you want we could exchange email addresses.

I hope you can get things sorted to your satisfaction. I think you have some convincing to do

Best wishes

Simon

heather, aloha

ah...i'm the 'don't really trust doctors too much cause of past experiences type of guy but the ones i have now i kinda
like a bit...'

i've always followed the 'guided' self medication program myself.

in the skeptics guide to drugs tramadol is a pussy cat...it's a wimp...a non-narcotic item they give to little old ladies
with headaches and fifteen other meds in their daily routine...now the codeine your taking is mixed with tylenol iirc...
what the us would call a tylenol #2 or #3 about 30mg codeine w/300mg apap..yes? this is another weak puppy, but
it's a mild narcotic...how many aday of these? i weigh 95kg now, but i get to take 4 tylenol#4's a day- that's 240mg
of codeine...the downside is the quantity of apap; now i also have Norco with 10mg hydrocodone and 325 apap for
those worser days/ or rather nights...

like you i also have a med for that nerve pain stuff (neurontin) which i only take in the evening...so's i'm mobile in the day, and
a muscle relaxant (skellexin) which i take only infrequently now, but again only in the evening...... "
cannabis is a very mild relaxant, it also reduces justifiable anxiety about the weird doctoring your enjoying, it'll help
stimulate your appetite, improve your sense of humor and sex life, and make you the hippest mom on the block.

a life chomping down double the recommended dosage of something that doesn't work is not much life.
i hope you can call on your general family doctor or something that actually kills pain...there are stronger things out there.
hyrocodone is a stronger narcotic brnad names vicodin, norco and others...and it's available in a liquid for folks
who can't take the apap/tylenol portion.

hope you get some relief...it's ok to cry at the doctors' office and make a scene saying 'this crap just doesn't help.'
all the best
aB

Hi Heather,
I want to throw in a bit of information which I learned in school about medications, but more importantly experienced it myself. Drugs which are absored via the liver, which many are, can have problems doing so. It all depends which drug gets there first. The liver can only metabolize so much drug at a time, so if by chance you are taking a few drugs which are competeing for absorbtion via the liver, the second and or third could very well get dumped and not metabolized. When I was takig Phenylbutazone ( a very old NSAID , but the best one for me)I was also taking AMitriptyline for sleeping. All of a sudden I stopped sleeping and blamed it on the new NSAID, but after blood levels were drawn we found out I was absorbing very little of the Amitriptyline. I hope this makes some kind of sense to you.They then increased my Amit to what was considered much too high of a dose so I could sleep. I do remember once I stopped taking the Phenylbutazone and forgot to adjust the AMitriptlyine and I ending up in the E>R with heart palpitations and the Amit level was 10X the normal amount. This may be his thinking. It is also important to space out your meds too give them the best chance to be absorbed. Hope this helps


Hope you feel better
Janet

Heather,

Besides pain, what is being done to control/reduce the inflammation? Are there any meds involved for that... NSAIDS, Prednisone etc? If not... why? I would ask for a pulse dose of Prednisone or do you have options such as Enbrel, Remicade type of drugs? (Avoid the NSAIDs. Just wondering if you on them).

Reducing your pain meds can change the way your brain perceives pain. You could be having whats known as break through pain. That is, the pain meds are deadening pain on the lower end of the pain scale and whats left of the pain process bursts through as more intense because your only feeling the tail end of the worst part of it. So reducing your pain meds can round out the pain somewhat. It is more important to reduce the inflammation (cause of the pain) then offset whats left with pain meds. Just adding more and more pain meds keeps the vicious cycle going. I would try to reduce them it and see what happens. Maybe the pins and needles effect will mellow out. Try the very low/no starch diet. Stop sugar intake. Fast for a day or two and see if it helps. Or, eat only once a day, morning or night, and see when the pain is worse, before or after eating. Get something from your doc to reduce the inflammation.

Everyone reacts differently to drugs. Though Tramadol (Ultram) technically is not a narcortic, it is a synthetic form of narcotic and not to be taken lightly. Chemicals is chemicals. It was explained to me by my pain doc this was a legal way around calling it a controlled substance by the drug company. It was also touted as non addictive. Turns out it is very addictive... some folks who have been on it for years can't get off of it. One tramadol and I'm on my a$$... or at least crossed eyed just as much as when I take Demerol. I find it much easier to stop using the Demerol or Morphine than it is Tramadol. Again, thats me... everyone reacts differently. Thats the reason there are so many pain meds with different compounds out there, everyone processes them differently. The more you take of them, the more you acclimate, the more you need. To stop them you have to reverse the process... slowly, and acclimate for days at each reduced dosage. The problem is of course reversing or weaning off is very painful because your body is not producing the dopamine or endorphines the drugs were replacing. Knowing how pain meds works goes a long way towards knowing how to manage them. I always try my absolute best to reduce the flare... in my case it is usually a day or two fast along with a pulse dose of prednisone slowly adding fruits and green veggies and then protein. By the third day I'm on the way off the Prednisone I'll sprinkle in a little Tramadol to help me throught the transition. Then I am very careful with the diet for weeks. This process has been greatly diminished since I have been on Remicade.

Kerry

Heather,

I want to reply to your post but I'm not thinking that clearly right now, but I do want to give you some because I know you are so frustrated with it all just like I am.

Sharon

hi
thank u all very much for replying.
i am trying to think things thru properly and as sensibly as possible regarding this tramadol situation, i understand the point that ur body gets used to a drug and then will ask for more, and i am trying to watch out for that, i am 29 the last thing i need is apainkiller addiction!. But i am just wondering if the following sheds any light on the situation. Before i was put on tramadol 2 years ago i was on co-codamol, a car accident then got me put on to morphine for a short period of time of which i came off without any probs i was happy not to need such a high dose of painkiller. and was left with just the co-codamol to control the pain, i cant say things were exactly bearable but i was giving it a good go, i suffer neck, upper back, and lower back pain. Any amount of walking drastically aggravates these areas, then i found myself having to do a lot of walking each day, i couldnt cope with the pain, was given tramadol. Now tramadol rite from the start only took the edge of the pain, i still had a lot of pain but it had been bearable enough to carry on just having hot baths and using heat on my back. When i got my car i was able to reduce the tramadol except for during a flare, but have always had a lot of pain. When i have had my steroid epidurals to relieve inflammation and no flare i am able to keep to as and when needed 200-400mg tramadol a day, still have pain but thats life!
Then i had another epidural last september, still had a lot of pain especially driving but was a good girl kept to my pain consultants recommended dose, the epidural wore off, winter came (ouch), i wasnt allowed any more epidurals til this month as i can only have so many in a year due to its side effects. A flare smacked me rite in the face, i had no choice but to up to maximum doses, but it wasnt touching it, eventually got the codeine too, it was still not enough to make it bearable to cope with, this is why i am so much at my wits end.
Have to go now will post back later (its time to go to school!)
take care
heather