I would start with going to the thread "Jessies advice for new pts" or something like that. Get the books that are recommended for self treatment, seek out alternative treatments, accupunture, whatever. But in the end, you have to do what works for you.

I did this bass-ackwards. After going through the list of pain meds, the only thing that worked was the Butrans patch and morphine. I am still currently taking morphine, but I've been fervently seeking the other treatments and am slowly working on decreasing my dosage. I'm almost at half the original dosage.

Best of luck to you!

Stephanie,
I can relate to your fears, I too worry about getting addicted, I think its good to keep that thought in check.

I try to be very aware of how I'm feeling, and check myself, if i really need to take them., can I wait a bit longer??

I take Tramadol, between 400 to 500 mg a day (max amount). I'm a bit worried what withdrawal will be like, but I know for now that I have no choice but to continue to take the Tramadol. My trigger points are in my upper body, shoulders, neck, etc...

My Pain Management doctor had me start out on Tylenol 3 and then I had to go up to Tylenol 4, then we tried a higher med, but we talked as I didn't want to keep going up. Do you have a PM doctor??

He said that Tramadol is not like narcotics, that your body doesn't keep needing higher doses and you don't have to keep going up.

I also am on Cymbalta and I have heard stories of the withdrawal from it, along with a mixture of other pain meds. My PM says he has me on all the non narcotic options that he can think of.

I don't want to be on meds for the rest of my life either, I keep searching high and low to find what will work best to get out of the nightmare of MPS!

I hope that my post helps to answer some of your concerns and fears. You are not alone, keep coming back and tell us how you are doing .

((((HUGS)))))) Kat

You do well to have that cautious attitude to the meds, as they are never an option to be taken lightly. There is evidence out there that suggests where strong medication is needed there is a minimal risk of addiction. That's the good news. There is also evidence that the body becomes dependant on the medication and you have to plan a steady, down graded, not too much or too fast withdrawal of the medication when it's no longer needed.

One of the most important parts of managing chronic pain is that you have to match the severity of the pain with the strength of the medication if you are to get relief and be able to make progress.

Being clever with your medication is one way to avoid problems as long as possible, mixing and matching what you take so you get the best sort of relief. http://www.painclinic.org/aboutpain-analgesicflowchart.htm has a brilliant medication flow chart you can look at, maybe considering other medications as Kat said.

We debate medication here all the time, so please do stick around, plus we have some good resources that have been put together over the last few years - 'jessies posts for new ppl' is one of them.

forgot to add that taking medication in the 'stop start' way you describe requires stronger meds to get relief. You can get better relief at a lower level / different pill if you take it/them regularly over the 24 hours.

It must be hard to have these worries on top of the misery of the constant pain. I find that I have pretty much stabilized in terms of my dosage of pain meds: They get me through to the evening when I can lie in bed and rest. I have no trouble with sleep.

Maybe the key for you is to start working on the trigger points and reduce the pain. Even if the pain does not immediately decline it makes you feel better because you are doing something about it.

Have you thought about how much acetaminophen you are taking all together? It can be hard on your liver. I take codeine without acetaminophen for that reason

Pumpkin31, can you explain a little more what you mean by the stop start of taking medication not working as well? Do you mean switching back and forth between the two meds? I would love to just stay on tramadol all the time but I fear that if I am always on it, it will stop working soon because when I first started taking it, I got by with very few pills a day and now I have to take 5-8 to get the same effect. I can literally see how my intake grows each time I start taking it again. It seems like my tolerance will shoot up really quickly.

Thank you everyone for your thoughts and encouragement. It helps just knowing that I'm not alone. I'm so happy I found this group because all of this time, I have felt very alone, like I'm the only one who lets MFPS effect me so much. Doctors act like they don't even know what it is. I found an MFR specialist and sometimes she doesn't seem to know the answers either. I often feel like i'm just being weak and shouldn't even be taking pain meds. I always feel like doctors and nurses and anyone who knows is judging me as an addict, and I secretly fear that they are right.

So just seeing that others are experiencing these problems and that people here haven't spiraled out of control is huge confidence builder for me, and I've already contacted my doctor to ask medication questions that I was previously afraid to.

I am going to look up all the resources you guys suggested and find the posts for people new to MFPS. Do I just search for it?

Thank you again and I am definitely going to stick around. =)

Stephanie

Hi Stephanie
it is a worry and I think every chronic pain sufferer has the added anxiety about the effects of ongoing pain medication to deal with on top of their misery, or maybe I should just speak for myself.
I worry a lot about it but I have learnt to take medication when I need it and if I go over what I feel comfortable with and start to stress I tell myself 'I am doing the best I can'. I find this reassuring.
I am not taking it to get high, I am taking it to dull the pain and I am trying to limit my usage. That is all I have at the end of the day to salve my conscience.
Pumpkin makes a good point about avoiding highs and lows by waiting till the pain is REALLY bad before medicating. Some say it is better to take at regular intervals. I have tried both methods and the drury is still out for me.
Tolerance builds fast for opioids for me because I too have an addictive personality. It feels like a constant juggling match most days.
Mixing pain killers with antihistamines and muscle relaxants, benzodiazepines and paracetemol also increase the effect of opiates (they are called potentiators). Though you should check with your doctor first.
Hope this helps.

Let me see if I can remember what I meant :) I had to take extra pills do cope with extra pain and my brain has a tendency to shut down on me and I fall asleep!

If I fail to explain it sufficiently have a look at these 6 tips for pain relief:http://www.painclinic.org/aboutpain-tipsforrelief.htm

Pain has a pattern, so like mine right now has a steady baseline of '4' with my current regime. But I'm getting bad 'breakthrough' pain from various things, going from short spikes up to '6' to long spikes up to '9' for hours at a time. It's quite unstable but I can still, just about, see the pattern. So I have my standard medications I take every damn day and set times during the day (4 times a day). This maintains that baseline level of 4, as well letting me do the rehab I needed and as much 'normal' stuff as possible. Each 'spike', or flare up, gets managed in different ways, hopefully without needing extra pills but sometimes they're the only option.

Life with chronic pain is much easier if the pain is maintained at a steady rate rather than jumping madly up and down.

Using medication in the same way gets the same results; so, not taking anything when things are good and trying to get as much done as possible before the pain hits again. This can last for minutes / hours or even days. Eventually something gives way and the pain begins to come back, the stiffness comes back, and you have to slow down and stop, rest, try and sleep and start taking pain pills. Except it takes a lot of pills to cover the pain and it gets scary.

If you tend to use the second way most then you're taking the hard route! It takes more and more pain pills to get on top of the pain - it's always harder to be chasing the pain, and frequently takes 50% more than normal.

Whereas if you start taking pain pills regularly you can begin to stabilise the pain and begin to start doing the rehab work to get better. Slowly, slowly, you get control back from the mps and life settles down.

Unfortunately, that lovely 'fluffy white cloud' image gets rained on big time if you have the dose -problems as described with tramadol. Don't rule out that the pain has got worse, and therefore you've needed more pain relief, as well as your body getting used to the medication. I have to say, it's a new one for me, having to go so far up the tramadol route to get relief.

My best advice is to read through the www.painclinic.org carefully, especially the advice about managing pain and the medication tree, and find yourself a good pain management doctor who you can have an open and honest discussion about your experiences with medication, plus also they can monitor you carefully if you decide to try something else and try and stabilise the pain.

Thanks Pumpkin31 for explaining a little more. I really like researching and so your links are very helpful. You are right that taking the drug at regular intervals is more effective but when I do that, that's when I become the most frightened. That's when I can see my tolerance growing on a daily basis and when I start to feel more like i need the drug not just for pain, which makes me feel like an addict.

I had no idea certain pain meds work better with parcentamol or IB Profin but I stopped taking those for fear of liver damage. As of right now this appears to be a problem I will have to manage for the rest of my life. Taking that much IB Profin - isn't that dangerous?

Also, I looked at a lot of those sites you suggested that explains medicines which was really informative. They had ever kind I've ever heard of except for Vicodin. I recently got Vicodin because my codein tolerance was over - wish I realized I could ask for strong codein, I knew that too but was relying on the doctor when I asked what my options were. He keeps saying what I'm on is it unless I want to go stronger and so I felt like I had no choice and he said vicodin is next step up.

I started with a half a pill and it did nothing, then another half, nothing. The next time I tried, I took a whole pill, nothing. Then the next time I tried, I took 2 whole pills. Still nothing. Did he give me sugar pills or does Vicodin just not do anything for our type of pain?

I know some drugs need to build up in your system and I didn't try that because I was having really bad tramadol withdrawals and it had been a few days so I decided to just go back on it. I wasn't trying to stop taking tramadol, but as I explained in the original post, I try to go back and forth to prevent the tolerance from building. I only asked for vicodin to help with the pain when I go off the tramadol to get my tolerance down.