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» LymeNet Flash » Questions and Discussion » Medical Questions » Pain! Why is my PAIN such a medical Hot Potato? Your thoughts??

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Author Topic: Pain! Why is my PAIN such a medical Hot Potato? Your thoughts??
LymeLearned
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I am sorry I stay away from here so much. It's just hard to face my illness, so I stick my head in the sand and hide a lot.

I have had the same doctor for three years. SHe is caring and compassionate about a lot of things, but one.

Actually, at this point, I am finally angry. I was kind, calm, patient, tolerant, and cooperative while my WHOLE life has fallen apart because of unmitigated pain. In 2006, I lost my ability to work. I went away quietly. I had long since lost my ability to play (no social life), and now I can't even function.

Guys, my house is a total wreck because I can't stand up long enough to even do my laundry. Clutter and dust rule this place, and *I* am the one embarrassed by it all. I live on a heating pad, returning to bed over a dozen times a day when the pain of standing becomes too much. My skin is blotchy and burned, but I can't help it. The pain is that bad. I'll do anything.

Is this fair? My doctor doesn't want to treat my pain. She does not want to give me stronger or more pain relief, and she has made it clear. I am so broken down in so many different body systems that it's not like there is some magic approach that can come along to save the day.

I am 49 years old, and have never had a substance abuse problem, but this taboo about prescribing pain medications has become the biggest barrier to my having any quality of life.

Tomorrow I see my reg. doc again. I have no other docs I trust, and I really am not even strong enough to keep going to various doctors to beg for help. Not only that, my fear is that a doctor who does not know me will even less likely to treat my pain. Your thoughts? Any advice is greatly appreciated.

--------------------
"SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:

http://www.youtube.com/TickedOffLiterally

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Beth22
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i'm so sorry i don't have any answers for you, but i'd like to say that the attitude of your doctor is ridiculous and unconscionable.
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merrygirl
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Hi there. I can relate to your situation. I have severe chronic pain from lyme and fibro.

My primary although amazing just wouldnt address my pain well other than nsaids.


What i suggest doing is finding a pain specialist. I know you dont feel like looking for another doctor right now, but it sounds like its your only option.

Most primary docs do not like to write rx for pain meds. the dea actually keep track of how many controlled substances that a doc rxs. If they write too many, they get the dea in their business and they audit their stuff. Thats my understanding.

the other thing is that general docs do not understand pain the way a specialist does. We go to docs that specialize in lyme right? So why not someone who specializes in pain?

i will explain my experience with pain specialists. I saw one at the loca hospital. I cant remember exactly what happened it was a while ago. But they did nothing but make me feel upset. They didnt offer any help other than a name of a medication that might help but was too new for them to try it. I ended up in tears.

So my llmd at the time suggested a place, nut it was n hours drive each way. If they were good i.didnt care i needed help. So i went. I will warn you that there will be a lot of hoops to jump through during the process but it is worth it.

The first appointment they just do an exam and you meet with the doc or np. I also was evaluated by a chiropractor. I brought my mri report and my pos lyme test. Their policy is to not rx meds or treatment at the first visit. They drug tested me. As long as what you are rxd is in your urine, you are fine. Anything illegal or not rxd to you and you are out.

I had to sign a contract basically that i will do a drug test whenever they want. It aso states you cant get other pain meds from other docs without them knowing. If you get admitted to hospital or go to er that is different.

Then they made me another appointment to discuss treatment options. This place approaches pain from all angles.which is important. They are not going to just hand you pills and send you on your way. They offered meds but i was also suggested to have some procedures (injections) physical therapy and even accupuncture.

I comply with everything. I also had to be evaluated by their therapist to see what kind of risk i was to become an addict. The contract states i need to meet with the therapist every 3-4 months to check on me. This is in addition to my regular psycho therapy elsewhere.

So yes it was daunting. But it has been a life saver. I think i honestly would have killed myself had i not gotten my pain to a tolerable level. Now i go once a month. I see whoever i need to see and i can get back to back appointments if i need to see more than one provider. I do my drug test and get my meds. I get drug tested every visit. As long as it is clear i get my rx.

The drug test in the clinic can tell what you are taking and how much. If you run out of meds early its too bad for you, because you didnt take them properly. They do not fill rx early.

I can honestly say that i have tons of addiction of everykind in my family. I was worried i would get sucked in too. But i am definitely not addicted to anything because i take my meds for real pain. I take my meds as rxd. I never take extra, because that is one way you will get addicted fast.

I will say that my body is dependant on pain meds and i will have withdrawls if i dont take them,.or at least wean off. This is normal and it doesnt mean you are an addict.

So i would really encourage you to find a specialist.

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Dogsandcats
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I see a pain dr. The first visit I went in they made me sign a bunch of papers I wouldn't get my drugs from anywhere else-streets or otherwise. I giggled to myself thinking I barely had energy to get to the doc, standing on the street just wouldn't happen. But they do this all to protect themselves and it makes it a safe environment for me.
Please go, there are so many things they have to offer. If you don't like the first one, wipe your feet off, and move on. I still can't work or run marathons, but I don't have the horrid pain.
Please either pm me or let us know how you are doing.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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sparkle7
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Seems like pain is a big issue these days. I don't know why "they" decided to crack down on people with pain & pain meds. Of all the things to do - they decide to make life harder for people who are being tortured by chronic pain... It's beyond belief.

Anyway - this thread has some good info -

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/106636?

Good luck.

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lpkayak
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Guys, my house is a total wreck because I can't stand up long enough to even do my laundry. Clutter and dust rule this place, and *I* am the one embarrassed by it all

ME TOO

NARCOTIC PAIN MEDS HAVE NOT WORKED FOR ME

IBUPROFEN-UP TO 1200MG A DAY AND FISH OIL HELP

ACTUALLY-MORE THAN HELP. AFTER GOING W/O IBU FOR 24 HRS I CAN BARELY WALK AND STAND

VERY OCCASSIONALLY NEURONTIN WORKS FOR EAR PAIN(NOT SURE IF THAT IS NARCOTIC)

OXYCODONE ETC DO NOT TOUCH MY PAIN

WE'RE ALL DIFFERENT...BUT LYME CAUSES INFLAMMATION SO IT MAKES SENSE TO TRY TO ATTACK THAT FIRST

LETS TALK SOON.

--------------------
Lyme? Its complicated. Educate yourself.

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jenniferk32
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Last year when I had the misdiagnosis of Fibromyalgia, my primary care doctor also would not prescribe narcotics, or even muscle relaxers other than NSAIDS. I was in horrible pain, especially in my upper back, shoulders and neck. I was contracted and stiff, and couldn't even lift my arms above shoulder level, if I was having a good day.

BUT my doctor did approve 20 sessions of physical therapy, and honestly it helped quite dramatically. Each session hurt so badly that I really cried, and I've never been a cryer over pain- not even when I was a kid and broke my femur, not a single tear.

He was a really strong man and he did things like putting his knee in my back and pulling my bent arms by the elbow all the way back as far as he could, and forcing them straight up to the sky when I couldn't even lift them beyond my shoulders on my own.

And then came the massages- now those hurt the worst! He used his knuckles and his elbows and well as his hands and he went DEEP, especially when he got to the knots. That's when I really cried. But actually I think that half the crying was more like catharsis than from the pain. It was like an emotional release from having all that pent-up pain for so long....

Long story short, it was worth the pain because it helped. I still hurt of course, but I maintain as much as I can by doing the things he showed me to do at home. I also get deep tissue massages. I think I should probably go to a chiropractor too, just haven't done it yet.

But then again, my Lyme problems are more of the neuropsychiatric type but with some muscoskeletal problems
as well. I do have chronic pain but I think that since it's much less than it was before that I'm just used to it, if that makes sense. I don't notice how bad it actually is until I start getting a massage.

I don't know specifically where your pain is concentrated and what PT could do that would help, but you have nothing to lose by trying it. Narcotics can numb the pain and certainly I believe that some people really need it- but it doesn't get to the root of the problem and treat it.

Also, have you tried acupuncture? I never have, but I have a friend with lyme and she swears by it.

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Robin123
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I was wondering if you got burned by a hot potato when I saw this, but guess not.

On a serious note, yes, you have a right to have pain treatment. I rotate pain meds so as not to have any one of them go up where I acclimate to them.

Can't you find somebody to figure out some pain meds with you? I'd keep looking for a doctor to do that until I found one. And that's literally what I did, many years ago, for the fibro pain.

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sparkle7
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We all seem to be so different when it comes to pain. Deep massage & physical therapy haven't helped me. I had a deep massage & ended up in bed for 3 days.

I like swimming & walking. I also try to do some stretching & chi gung. Excedrin really helps if I get a headache. More so than prescription migraine meds.

Out of everything, the opiods work best for me. I think you have to go to a pain management clinic to get them if your doctor refuses to give them out. They really don't want to let people have them. It's easier to get anti-depressants. I told my doctor I was in pain, not depressed.

Some of the doctors think anti-depressants can help with pain in fibromyalgia. I tried them for a few weeks but they didn't help me. I don't see the point of them - they are just as "addictive" in my book as opiods. You can't just stop taking them if you are on anti-depressants.

You have to "taper off"... I mean, what's the difference? It's alwys best to try physical therapy, massage, herbs, saunas, exercise, biofeedback therapy, meditation, etc. first. After a while, chronic pain realy can drain you & it's hard to function.

I don't think it's bad to try an opiod to see if it helps. I think it may depend on the type of pain & what is causing it. In my case, they really help but it's so hard to find a doctor who will prescribe them.

I don't know what the long term effects of Advil, Tylenol, & the OTC pills will be. I read opiods are actually safer in the long run. The interesting thing is that opiods are not that expensive. Sometimes, I think that's the reason why they give out the more expensive anti-depressants....(?)

I also experienced a difference between the generic oxycodone & the brand name (Roxycodone). The generic ones didn't really work for me. I had to specify the non-generic. Some states don't even carry the non-generic ones.

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Lovespugs
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I found a med that really helps me with the body and muscle aches, its called tramadol which is generic for Ultram.
It is used mostly for inflamation for those with arthritus but since lymes creates alot of inflamation it seems to help.

and its not a narcotic so most doctors dont have a problem perscribing it.

I take 2 50 mg 3 times a day...
my body really feels it when Im over do for a dose.

Usually within an hour I feel much better. though I have to admit when im having a really bad day nothing seems to help but I can only
imagine what I would be like if I didnt take it.

Here is the catch....not all generics are created alike....I have found that the generic I get from Rite Aid works much better than any other generic.

Im not the only one who has noticed this.
so I know its not in my head.

give it a few days to notice a difference I dont think its one of those instant pain relievers since it seems to help with inflamation.

anyway....hope this helps....

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lpkayak
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sparkle; mixing aspirin based meds and ibuprofen (they have diff names otc) is ba for liver...even at low doses be careful my son got into trouble in a few days of this

i do occasionally use musc relaxins too...i prefer skelaxin over flexeril cuz it doesn't make me sleepy


and i use tramadol to sleep if things are really bad...but i thought it was fo sleep...not inflamm

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Lyme? Its complicated. Educate yourself.

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LuLuFlorida
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I am sorry to hear what you're going through, its not acceptable. What people who are not a chronic pain don't understand is how much pain can really affect somebody. When some doctors find out I'm on pain medicine they think it's the cause of all my problems which is insane. My life changed after seeing a respectable pain management doctor.

I have been a constant pain since 2005 and finally started taking medicine in 2007. It is important to take something for long lasting and breakthrough pain. Taking pain medicine improved my quality of life by letting me move around more, think, and sleep. I also relized I could interact more with others.

Even on medicine I'm still always in pain, the goal of treatment isn't to be pain free its improve your quality of life. as long as pain medicine is used responsibly and not abused there's nothing wrong with taking it when you need it.

Since I started improving I have been able to cut my medicine dosage in half. I hope you're able to find a good doctor and have a little bit of your life back.

Take care and God bless,
Lindsay

--------------------
"One day at a time"

Current:
-1.2 IM bicillin three times a week
-1.25 IV Vancomycin every day
-IV glutathione and IM B12
-Byron White since Jan. 2011
-ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano...

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LuLuFlorida
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I forgot to mention that I do take narcotics. Not all of them work so I have tried a few. I am randomly drug tested by Florida laws. I am not tested every month its very random. Nsaids do not work for me.

I also take Fiorocet for headaches.
I have not found anything to help my nerve pain and can't take neurotin, lyrica, syvallia (spelling is wrong), or cymbalta.

I also go the the chiropractor and massage therapy. The massages do hurt, I have had tears rolling down my cheek as I was getting a massage, but afterwards its worth it. I have also tried acupuncture and physical therapy but unfortunately these haven't helped my pain.

PT has helped me gain energy though. A product made for called O24 Fibromyalgia has really helped my nerve pain. Pain is hard to treat and unfortunately is an ongoing battle.

--------------------
"One day at a time"

Current:
-1.2 IM bicillin three times a week
-1.25 IV Vancomycin every day
-IV glutathione and IM B12
-Byron White since Jan. 2011
-ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano...

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sparkle7
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Thanks lpkayak. I have been taking NAC to help my liver in regards to Excedrin. I don't take that much. The smallest possible dose only as needed.

I also have liver protective herbs but I dowse everything & it comes up "no" usually.

I can relate to the sleep comments. I thought is was all kinds of things that lead to insomnia but really - it was the pain that kept me awake. When they say you have Fibro or Lyme or CFS - many times they say it's affecting your brain chemistry, hormones, etc.

It might be...? I had a prescription for sleep meds but really all I needed was to take a pain med & I can usually fall asleep. I would wake up at 4am in pain - so, the pan was distrubing my sleep. With fibro they tell you it's Alpha brainwave patterns intruding, etc., etc. but for me - it was really pain that was disturbing my sleep.

In my case, I don't think the pain is from inflammation. I tried Zyflamend, malic acid, magnesium, tramadol, etc. & none of them worked. I don't think it nerve pain, either.

I suspect - it may be from some kind of toxin from parasites. I'm doing the anti-parasite herbs & it seems to be doing something - finally after 16 years...

I'm just going to stick with it. If it's threadworms (which is what I suspect), it can take about a year or 2 of treatment to get rid of them.

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Lovespugs
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Ive never heard of tramadol for sleep but I guess anything is possible....

I found out about it from my friend who at 35 years of age had to have double hip replacement due to arthritus....

She had been on all kinds of pain meds for her pain....and really liked the tramadol....
so she suggested it to me....

It doesnt make me tired its usually the oposite..I feel a little more energy after I take it.

but meds work differently on everyone....

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lpkayak
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i don't know...maybe it was the pain keeping me up (re tramadol)

i want to be clear about what i said about ibuprofen

it helps me a lot...i can't walk if i stop it for a few days

but i have tried every other nsaid that has come along more than once and none of them do a thing

also...i LOVE ketoralac...but it is heavy duty ibu and very bad on liver so i only get it post op

when i started ibu in 84...i was taking 3200mg a day. i also took carafete and zantac to protect my stomach

as i got better i was able to cut back and when i added good quality fish oil---6000mg a day---i could take less.

now i only take 1200mg-600 12 hrs apart

i think they changed the recommened dosage from 800 every 6 hrs to 600 every 6 hrs

--------------------
Lyme? Its complicated. Educate yourself.

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merrygirl
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my pain docs made me see a sleep doctor for a sleep study. Well I had already been diagnosed with sleep apnea so I said sure.

It turns out that I stopped breathing every 5 minutes or less. So I was not getting good sleep at all.

My pain is definitely associated with my sleep or lack there of.

The worse my sleep the worse the pain.

I also have bad insomnia. So there is a role in sleep with pain.

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LymeLearned
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YES! THere is such a vicious cycle between pain and sleep loss. THEY EACH are causing each other!

My brilliant doctor gave me a SECOND antidepressant, so now I am on Cymbalta AND Celexa. Thanks to LYME, I am in Stage II renal failure. SO, NO NSAIDS, and maybe a host of other meds are kidney toxic. What if the antidepressants are kidney toxic too?

Funny how EVERY veterinary site admits it can cause this, IN DOGS, but medical human docs don't get that.

And YET, when medical science wants to know how something will affect humans, what do they do? Well, they round up a bunch of hapless dogs in cages, and test it out on THEM.

I think that so many Lyme patients are kidney patients who have NO CLUE it is Lyme. If THIS is the case though, once a transplant is given, and antirejection drugs introduced,

one would think that the next thing would be a major decline if the patient had Lyme all along. My best friend's ex just got a transplant for his renal failure secondary to his "autoimmune" disease.

I'll let you know how this turns out. Today I see the physiatrist, and if she doesn't help, I will go to a doctor I found on a google search for "doctors refuse to treat pain".

I found THIS link:

http://www.painmed.org/

I am in NO hurry to kill off what is left of my kidneys with everything under the sun to avoid narcotics. The ONE thing I can confidently say is that the OLDER a medication is, and the longer it has been in use, the safer I feel in taking it.


I TOO laughed at the idea of the contract that I "won't go to any other doctors" I DRAG myself to any one at all in the first place. This is almost funny. But, then again being up multiple times a night in pain is not.

I can't thank you guys enough for sharing your insights, and I am again thinking long and HARD on whether I want to be on neurontin, celexa and cymbalta,

along WITH flexeril, ambien, my opiod pain med (lower level), and my two antibiotics. I want to keep the latter three meds, and replace the
I also am being sent to a physiatrist.

My faith is not too strong in what a physiatrist will do to avoid prescribing old true and trusted pain meds over often toxic newer drugs, that are promoted heavily by the pharm companies.

I have a list from that link I put in here, after I called their foundation for advice on a local doctor with an old school approach.

THANK YOU GUYS SO SO MUCH!!!!!!!!! Will update after today's appt.

--------------------
"SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:

http://www.youtube.com/TickedOffLiterally

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sparkle7
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It never made sense to me to take anti-depressants. They try to claim that fibromyalgia pain may be caused by a brain chemistry issue & that the anti-depressants help that. I don't believe it. I think it's just a way to expand their market. They don't "really" know why they work for fibromyalgia - That's a red flag to me.

Never liked the idea of anti-depressants for anyone. The studies show taking a walk outside is just as effective. Opiods have been used for thousands of years. You just have to be careful with them & try to keep your dose as low as possible.

We all are different, though. For me, it's really an issue of "the pain" - stupid... I've been trying to find the root cause for 16 years & I'm still in pain. I tried almost everything I could think of in the way of alternative medicine but sometimes you really need something to make it stop for a while.

i don't know why they are making it so difficult for us. I have some ideas but I'd rather keep them to myself for the moment.

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Laura_W
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I have heard of trazadone for sleep...

tramadol for inflamation...

Could this be what you meant?

--------------------
10/10 EIA 1.4+, 41 (IGG), 23 (IGM)
Bitten over 20 years ago.
Currently not treating, looking for a Dr who will work with my insurance lol.

More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision.

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Suzy50
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I take Trazadone 50 mg. for sleep, it is an anti-depressant and works good for sleep. Hope this helps.
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Suzy50
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I agree with the others, you need a good pain management specialist. If you don't like one, move on. There are good ones out there.
Posts: 44 | From New York | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
Twisted Jon
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Seeing a pain doc, all I got was an increase in my Neurotin. Was only 400mg 2x a day now am up to 600mg 3x a day to see if that helps with pain. I thought it had got rid of my shaking/tremors but they seem to pop up whenever. Eh, sooner or later we'll figure this out...
Posts: 98 | From Maytown PA | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
   

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