pain management

[linda]

This is the last I'm going to post about this for a while as I feel I've been monopolizing the replies. If anyone wants to know more about my experiences they are welcome to email me.

I look at Vicodin vs. alternative pain therapy the same way we look at AP vs. biologics. AP is glacial and takes time, but is much safer and more effective than biologics in the long run. It is a long term solution to a chronic problem. Alternative pain therapies (Lyrica, pain patches, acupuncture, massage, water therapy, etc.) take time, altho not as long as AP can take, are safer and more effective than vicodin in the long run, and are permanent solutions to a chronic problem.

I know I'm a bit outspoken on this subject, but only because I've been down that road of dependency. Vicodin is just plain dangerous for anyone for long term therapy and no set end date. I have no problems with using it occasionally or after surgeries, injuries. I know we all want to believe that we're strong enough to resist addiction, and there have been studies that indicate that people with chronic pain do not become addicted. I believe there is some truth in those studies. But physical dependence is not the same as addiction; it's a physical reponse that we have absolutely no control over, and that's the real danger here. I've done both, and I would rather suffer a little manageable pain than be dependent on vicodin. And I would also rather spend a month adjusting to a new med or therapy than 4 months weaning off of vicodin. I know the side effects can be a nuisance at first, but believe me, they are nothing compared to the migraines, nausea, insomnia and “heebie jeebies” (which, btw, were the worst sensation I've ever felt in my life:sick::sick::sick:) one gets from withdrawing from a narcotic.

It's tempting to go with a quick fix when we are in pain, but as usual, it's better to take the difficult path rather than the easy one. Which irritates me like I can't tell you!- :X:X:X…can't the easy way be the right way, just once!!! Okay, I'll step off my soap box now. 

linda

[Key Pounds]

Linda

You are sooo right!  I really believe that if something is hurting you bad enough to use a narc, better find the source as to put a temporary bandaid on it!   So much  easier!!

 

YOU GO GIRL!!!!!!!

blessings to ya

Key

[Dena]

Don't worry about monopolizing replies–we're all here to help each other.

I agree that getting to the cause of a problem is much better than masking the symptoms.  That's why I believe  AP is so helpful, pending science finding a cure.

Don't we all wish the easy way could solve things!  I admire your resolve–you're on the right track.  Keep chugging along.  We're all there with you.:)

[klogan]

What is a pain patch exactly? I am just starting to use Vicodin occassionally, but you're right this is a long haul, so I should look into the other stuff pronto…

[linda]

You can buy the heat patches OTC, or there is a patch that has lidocaine on it. They are not generic yet, thy're called Lidoderm patches. If you're going to use them more than occasionally, it's probably cheaper to use the Lidoderm patches. They are about 3″x5″, you can cut them into different sizes and shapes and wear them for 12 hours. You can wear uo to 3 patches at a time. I use them for my back and neck pain. They do a good job of numbing the area, but not so much that you wouldn't be able to drive if you had one on your leg. Very low side effects, obviously they won't hurt your stomach and they are not addictive. Have you tried tramadol or lyrica? There is a slight risk of dependence with tramadol, but it's much lower than with vicodin.
GayG and I have both had great success with acupuncture as well, no side effects, but can be expensive.  Good luck,

linda

[klogan]

Thanks! I'm going to look for those!

Accupuncture is going to come after I'm done paying for phys therapy – 700$ deductible!!!!

klogan

[Michele]

Linda,

You've provided experienced insight on this topic for me and it is appreciated!

I'm unclear, are the lideoderm patches prescription or OTC?

The pain management doctor I saw said exactly what you are saying. Vicodin is not a longterm solution for pain. She started me on Lyrica to prevent nerve damage because I was still in so much pain even with vicodin and / or trammadol. (Relafen worked but started to chew up my stomach and I had to discontinue this medicine. Multiple accupuncture a couple times a week fascilitated no relief for me.) The sad news for me is, Lyrica makes me feel worse than the original pain (even at 25 mg.) It took about 32 hours for that to leave my system.

One strategy I tried was taking vicodin for a few weeks and then switching back to Trammadol for a few weeks until it started losing effectiveness…then I switched back to vicodin. (Hoping pain management doc. would have a solution.) Well, it's back to the pain management doc. if I want to explore more options. But all she mentioned on the phone were other anti-depressant type medicines. I don't get their relationship to pain management. My friend mentioned they are older Fibromyalgia medicines.

Sometimes I think, well if I have to live the rest of my life in this much pain, without hope for relief, why would I try to get off of vicodin and who cares if I become dependent. Please understand, I am severely frightened of drugs and dependency. I have never even experimented recreationally or drink much alcohol. So this attitude only reflects the extreme levels of pain I find myself in during major flare episodes / herxes and trying to find some way to cope enough to want to keep living.

So my goal is to kick the disease with antibiotics and as Dr. S said, “Eventually we'll get you off of the pain medicines.”

Michele

[linda]

I understand how you feel right now, when I started taking vicodin I was pretty much bedridden and nothing else seemed to work. If I could have crawled out of my body I would have just to get away from the pain. You had a few questions that I hope I can help with.

The Lidoderm patches are prescription only, the heat patches are OTC. With the Lidoderm rx, you get 30 patches, quite a few more than you will get with the heat patches.

As for the anti-depressants; the thinking is that insomnia, a common symptom of FMS, makes the FMS pain worse. This is very true for me.  Anti-depressants are often rx'd for bedtime to help with sleep, however, because depression is also a symptom of FMS, they can also be rx'd for daytime use as well.

I don't know what to do tell you about the acupuncture, if done correctly it does the same thing as vicodin, release endorphins. I know you're frustrated, but it might be worth it to try a different acupuncturist. A good one will rotate needle locations if you're not getting any relief. I had to incorporate deep tissue massage and warm water therapy as well as acupuncture, lidoderm patches, and tramadol and lyrica to get off of the vicodin. Gradually I stopped the massage therapy, water therapy, acupuncture, and reduced the dosage of the lyrica and lidoderm to occasional use. It was not an easy road and took a combo of therapies. I still have bad days where I throw on a patch, but my only constant pain med is tramadol.

I wish the lyrica was helping more, but there are other meds such as muscle relaxers that might help. They'll definitely help you sleep, but they make me too foggy so I don't use them. They may help you, tho.  I'm wondering about the dx of FMS- lyrica helps my FMS pain but doesn't do much at all for the arthritis pain. Maybe the problem is that you've been misdiagnosed, there are about 100 different types of AI dx. Muscle pain from FMS is not from joint inflammation, they really don't know yet what causes it. But you can definitely get muscle pain around the joints that are inflamed from arhtritis. If that is what's going on with you, then lyrica wouldn't help much.

Vicodin- I really don't know what to tell you. You can keep taking it, but if you begin to notice that it's not working as well or is wearing off quicker than it used to, it's time to stop; you're becoming tolerant to it at that point. It's a downhill road from there. Like you, I didn't drink and led a healthy lifestyle with diet and exercise- never in a million yrs did I or anyone who knew me think that I would become dependent on pain meds. You're going to figure this out because you want to and you're taking the time to learn about your options. The AP is going to work, and you will get this pain under control- I Promise!!!
I know this is probably a redundent question, but have you tried lowering ths dose of the abx?- it may be that you can't tolerate the dose you're on.
I wish so much that this will resolve for you very soon,

linda

[Dena]

I have been on a very low dose of an anti-depressant for a long time.  When it was prescribed locally, I called my doctor in the states and asked him about it as I was told it was for pain.  He said that it is fine for pain, so I started taking it.  I can't say it helped a lot with the pain, but I generally feel better taking it and I have never been diagnosed with depression.

I often take a couple of arthritis strength tylenol before bedtime to take the edge off aches which can interfere with getting to sleep.

I, too, have a lot of muscle pain from time to time and wonder if that isn't a touch of fibro?  So many unanswered questions.

When I'm really feeling bad, I just go to bed and take a long nap.  That helps a lot.

Hang in there.  I've been to the point of tears with pain in the past and wanted to crawl into a cave a disappear, but the AP helped so much that I can deal with the pain now.

[suera]

Hi Michelle,

I don't know where I would be without my prednisone. Now I know this is not the best answer either and we are all looking for the least toxic meds but you must function and I know from the time I got this beast til now I wouldn't be able to function without it. I have reduced my dose from 20 to 5 but I still need it. I don't know if this is a better or worse solution that Vicodin, anybody?

I too tried acupuncture and massage therapy. With acupuncture I noticed nothing and as a matter of being practical it is just to expensive to continue when you don't notice any difference. Massage therapy helps temporarily and with all we go through I think this is a little pleasure I can indulge in.

Hope you find some relief….hope we all do!

[Michele]

Some more thoughts about pain and these diseases:

I do wonder about the dx because some of what you are suggesting as helpful, just inflames my situation. The warm therapy pool completely immobilized me. The pressure of the water was so completely uncomfortable the therapist had to pull me to shallow water so I could get out. I tried it one more time with my family on a day that I felt pretty good, and I couldn't get past knee deep or stay in the water knee deep. Are there any ideas what could cause this? Does water bother any one else? I just end up happily in my shallow bath water and epsom salts. That I can tolerate. But whatever hit me, changed my ability to be in a pool. A couple months earlier I was swimming happily with my kids.

I've wondered about the training of the accupuncturist. So has my mom, she's begged me to try someone else.

Prednisone was prescribed from a tapering pulsed level once in Sept. and once in Dec. Neither time did I experience any relief, at all!! The first time I had some sort of reaction in my rib cage / lungs / diaphramatic muscles that made breathing difficult. The second time, I was already so sick from a huge herx and the flu I couldn't tell anything. When I've asked the “rheumys” if I have arthritis, why doesn't prednisone help my pain? They cannot answer me and shrug their shoulders.

I have one of the lowest doses of minocin of anyone on this board with the guidance of Dr. S. 2 mg MWF. Whatever beasts are inside me do respond. It must be the right dose as I herx in a very predictable time pattern. When I try to bump it up to 3 mg…then I get a runaway herx that will last for days. Sure keeps the mincoin expenses lower!

The best pain medicine I've had was relafen and advil, but they started chewing up my stomach.

I want to point out another really weird symptom I have as I wonder if it is common to RA or something else…I get an uncomfortable surging sensation that sometimes I feel around my ankles and breast plate. It is just randomly present or it can be kicked off with some type of stressor like being startled or a hormonal fluctuation.

That's another thing. Stress itself was something I have had a lot of and could manage. Now something as simple as a dog barking or an unexpected loud noise causes a whole body surge and I feel really terrible and shaky afterward. Does this happen to anyone else?

As far as joints, they hurt. But other than a little bit of puffiness around my knees, I don't have red swollen joints. Thank God, so far anyway, the xrays show no joint erosions.

I also have trouble sleeping and now unfortunately must rely on 1/2 dose ambien. Though it 99% of the time helps me sleep well, and I am thankful because that is 7 hours out of the day that I am able to leave the world of pain.

So with all of these very odd and completely opposite most peoples experiences, every day I think, “What exactly IS wrong in my body?!”

Does this fit Lyme or RA? Something else? Or just the “pea soup” of a Th1 inflammatory disease? Is there a diagnostician that could pull this together?

And if it's Th1 pea soup, MP makes sense. But the risk of MP dose sizes for me is enormous. There are few medicines I take at full dose. Even the pain medicines work at half dose. But so far Th1 and Marshall's systemic description has been the only feasible and all encompassing explanation.

This is a saga I guess I had to get off of my chest again. Sorry for all the details and it probably belongs in some other forum than pain management, like “diagnose me properly and please fix me!” :crying:

Michele

[Dena]

Oh, Michele, proper diagnosis is the key, isn' it?  I wish doctors knew more.  I sometimes wonder if my diagnosis is correct.  All this trial and error is daunting, but we know our own bodies better than anyone. 

I was so healthy up to age 50 that when the least little thing bothered me, I was off to the doctor demanding an explanation–what is it and how do I fix it?  I'll never forget the pain in a leg muscle which appeared while I was studying for the Ohio bar exam.  I was at the doctor's immediately.  He said it was a blood clot.  I responded with a hopeful, “Will it kill me, because if it will, I'm going to stop studying.”  He smiled and said, no, it's not going to kill you.  The ones you don't feel are the dangerous ones.”  Needless to say I went ahead studying and passed with flying colors.

In the last ten years, confidence in diagnosis and treatment has been harder to come by.  One thing I have learned is that I cannot tolerate the normal adult dose of a lot of medicines.  I keep reminding my doctors I am a 100 pounder, so they need to look at my weight as if I were a child and not prescribe the normal adult dose. 

I kept a detailed log when the arthritic symptoms first appeared and presented it months later to the rheumatologist at U of Mich.  He was amazed at my log and said it helped tremendously.  I have stopped keeping it, but wonder if I shouldn't start again.  Now I just look at the blood tests to monitor what is going on.  Again, we know ourselves better than anyone and that knowledge is valuable to the doctors who will take the time — if they don't take the time, there are others who will.

At least you are getting relief from your pain meds.  Keep up the good work.  This will all work out as you are on the right track.

[linda]

Insomnia, sensitivity to heat and cold, stress making symptoms worse; all these are classic FMS symptoms. I see why your doctor made that dx, but they are also symptoms of other diseases as well. I think we need to send you to Dr. House!;) If only it were that simple.

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