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Old 06-11-2012, 02:30 PM   #1
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Chronic back pain and headaches pain doctor starting to not believe me

Ive been having chronic back problems ever since i hurt my back dead lifting 3 years ago. I finally got in to a new pain clinic in november. I started having severe headaches in october.

Ive tried every med under the sun for my headaches and nothing helped. I did fiorocet and it helped for 2 hours then stopped so id have to take one every 2 hours which my doctor said wasnt good to do. Ive tried migraine meds like imatrex ect.. none of them helped at all and all the doctors say they arent migraines cause no light or sound sensitivity. Ive tried high doses of ibprophen, naproxen ect... mild or no help. The only thing that helps is percocet (vicodin used to help but then it just stopped all of a sudden)

It seems percocet is doing that now, it used to work great and now it doesnt seem to be working much at all for my head or back.

My headaches are unknown origin, all my tests came back negative, all the MRI's CT's ect... came back fine.

My l5 disc came back on an MRI as a protrusion but its not hitting a nerve so all doctors are telling me it shouldnt be causing the severe pain that it is causing.

Well everytime I go to my pain doctor he asks me what is causing my headaches and back pain and each time I tell him the same thing, the disc in my back and I dont know whats causing my headaches and I keep asking him are there any other tests to do and he says no.

Ive been with him since november of last year and ive been on perocet 10 mg for 3-4 months now and its worked great until this month. Its just not very effective at all now and I dont know why.

I dont wanna ask for an increase and have him say why would you need something stronger since all your tests say you shouldnt be in pain. Im just afraid, i mean if I do ask should I ask for a change of medicine, maybe morphine or dilaudid or something? I mean is it possible my body isnt converting the oxycodone correctly or no? I go back next month so I have some time to think, I just dont know what to do, also i dont like taking tylenol every day even though its only 10/325 x 3 a day

 
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Old 06-11-2012, 04:59 PM   #2
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Having pains of unknown origin is incredibly difficult, having headaches of unknown origin is almost impossible. Dr.'s do not like to treat headaches with Narcotics for many different reasons, one of the biggest is "rebound pain". The more narcotics you take and the more your body gets used to them the more headache pain they can actually cause you to have, and it sounds like this is exactly what's happening. Adding more and more narcotics is not always a good things. Tylenol and Ibuprofen are also really great at causing rebound headaches and your pumping yourself full of tylenol 975mgs daily....

Realistically thinking that a Dr. is going to put you on a Long acting pain med like morphine or dilauded when it sounds like your having trouble just getting him to keep scripting you Percocet, for the type of back pain and headaches your having is probably not going to happen. You do have a couple of options here, you can get Oxycodone, the narcotic part of Percocet in pure form without the apap. Your dr. might be willing to switch you to it at a higher dose, but it sounds like your body metabolizes these drugs pretty fast, your moving up the tolerance ladder pretty quick. Have you seen a neurologist to have the headaches evaluated? The other things is, and I know this sounds cruel, but I promise it won't kill you, it may be time to take a med break and see where your headache pain really is, find out what is your actual headache pain, and what is rebound headache pain from all the pain meds your taking. Yes you will have to deal with some pain issues for a bit, but the pain won't kill you...I've had to do this many times over the years, it can be done. Until you find out what is actually "your" pain and what is being added by the things you think are helping you, it's going to be nearly impossible to get on the right path to treatment. Once your on that path with a neurologist, who specializes in headaches...then you start looking for the right meds to control the actual pain. If you address the problem by being willing to do whatevers needed to fix it, it goes a lot farther with your pain Dr.'s, and there are many other ways to control headaches, besides narcotics.

But just suggesting random stronger long acting meds to your Dr. at this point...doesn't sound like it will work, and will probably work against you if he's already starting to not believe you...when you start asking for specific meds, they tend to start thinking your wanting the meds for other reasons than pain control....

Hang in there.

Kat

 
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Old 06-11-2012, 09:24 PM   #3
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Kat has some great advice. I'd definitely get in with a good headache specialist and rule out rebound. Often if you start pain meds early in a new headache it could have now turned into rebound, or at a minimum, you don't know your baseline level and frequency anymore as it has evolved. It takes some patience and trial & error, but there are some good headache preventatives to try and likely a lot more tests to be run (as well as review of your symptoms to try to make a diagnosis).

By the way, you can have migraines without light & noise sensitivity which don't respond to Triptans, but the internet isn't the place for diagnosis. How often are you getting the headaches and how long do they last? Tolerance is a normal part of pain management, especially for young folks. It is something I have struggled with.

Often doctors put patients on pain meds too quickly before a true diagnosis is made and before alternative treatments & meds have been tried. It is good to report back to your doctor you are having increased pain, but you don't want to be asking for more/stronger meds, and especially not by name.

Have they had you try physical therapy, muscle relaxers, and other non narcotic meds, TENs unit, etc? Push them to give you the appropriate referrals to specialists. Sounds like you may be with a dead end with this doctor. Not because they likely won't want to escalate your pain meds, but because it sounds like they haven't done much else for you. Long term its much better.

Short term I know it sucks to have increased pain. The pain meds also often make you more sensitive to the pain. Even if they were to put you on a stronger long acting pain med, you then get stuck in that cycle. Its not something I have enjoyed and would not have done it until I had spent years seeing several dozen doctors and trying all the treatments and diagnostics they recommended. Best wishes.
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Old 06-11-2012, 10:00 PM   #4
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Re: Chronic back pain and headaches pain doctor starting to not believe me

I agree with both responses giving....trust me when I tell you, you do not want to go in there a demand or even ask about stronger meds. I have a chronic Illness and I was diagnosed over 14 years ago. I have been in and out of hospitals most of my adult life. I have been on SSD for 7 years now. I have a hematologist/oncologist, I have a rheumatologist, a gastrologist, a neurologist, a cardiologist, a PCP, and last but not least a Pain management physician. I still make sure I cover myself because I don't want anyone to question me or accuse me of anything. As far as the percocet not working anymore, my guess is your body is starting to get use to it and in that case you will have to go to something else OR like they said in the other response, Stop taking the pain meds for a while and see if what is causing the headaches. Sometimes pain meds can cause headaches. So you may have to stop taking the meds just to see if that helps. But I wouldn't do that unless you talk with your doctor. DO NOT STOP TAKING MEDS WITHOUT TALKING TO PMP!!! When the PMP can't diagnose what the problem is the first thing they assume that there is no problem but don't you give up. I went almost 11 months with a consistant migraine and in and out of the hospital. Taking IV dilauded, and even got shots in the head. The doctors would tell me it's because of my Illness was why I was having the headaches. They just kept telling me its the disease, your underlined illness is why you are having headaches. (they say that when they don't know what to do next). Finally I went to a different hospital and they did a few test. On top of having Lupus SLE, they diagnosed me with a tumor in my pituatory gland. That's why I was having the severe headaches. Bottom line is.... keep a journal of your headaches and back pain. Also TALK with your doctor and also if they are a caring doctor they will listen. Tell him that the percocet is not working anymore and you don't know what to do next. Good luck!!! I am rooting for you.

 
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Old 06-11-2012, 10:08 PM   #5
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Do you have any pain in the buttock, hip or leg, or is it mostly in the lower back? I assume you have consulted with a neurologist. Did you have an EMG?

 
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Old 06-12-2012, 11:50 AM   #6
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Quote:
Originally Posted by tortoisegirl View Post
Kat has some great advice. I'd definitely get in with a good headache specialist and rule out rebound. Often if you start pain meds early in a new headache it could have now turned into rebound, or at a minimum, you don't know your baseline level and frequency anymore as it has evolved. It takes some patience and trial & error, but there are some good headache preventatives to try and likely a lot more tests to be run (as well as review of your symptoms to try to make a diagnosis).

By the way, you can have migraines without light & noise sensitivity which don't respond to Triptans, but the internet isn't the place for diagnosis. How often are you getting the headaches and how long do they last? Tolerance is a normal part of pain management, especially for young folks. It is something I have struggled with.

Often doctors put patients on pain meds too quickly before a true diagnosis is made and before alternative treatments & meds have been tried. It is good to report back to your doctor you are having increased pain, but you don't want to be asking for more/stronger meds, and especially not by name.

Have they had you try physical therapy, muscle relaxers, and other non narcotic meds, TENs unit, etc? Push them to give you the appropriate referrals to specialists. Sounds like you may be with a dead end with this doctor. Not because they likely won't want to escalate your pain meds, but because it sounds like they haven't done much else for you. Long term its much better.

Short term I know it sucks to have increased pain. The pain meds also often make you more sensitive to the pain. Even if they were to put you on a stronger long acting pain med, you then get stuck in that cycle. Its not something I have enjoyed and would not have done it until I had spent years seeing several dozen doctors and trying all the treatments and diagnostics they recommended. Best wishes.
I was on benzos for anxiety and I quit all of a sudden my doctor didnt tell me to wean down and i went through 2 weeks of hell, ever since that I havent been able to take benzos at all. If I do take them i freak out whenever I try to go to sleep, i start crying, i feel like im going to throw up, i start shaking ect... and it has been 6 months since ive touched a benzo i took 1 2 weeks ago and the same thing happened and it happened for about a week. So i know i cant take benzo muscle relaxers, dunno if there are any other kind. Ive been taking kava kava (dunno if its a muscle relaxer or not)


Yeah i have pain in my butt, hip and lower back and it runs down my leg also.

The headaches are constant usually 5 days a week and I wake up with em, and most of the time they are there until I go to bed, the only thing thats kept me sane was the pain meds, they helped enough so the headaches werent unbareable.

How do u get pituitary testing done?

Would it show up on an MRI or CT or is there blood work done, also can brain chemicals cause headaches like low seritonin ect.. and if so how can i get a test done on those, doctors keep telling me the dont test neurotransmitters they just treat based on symptoms.

Also I have low testosterone, 200 on scale of 300-800 at 26 years old

I did talk to a neurologist she said the only thing she could try is like tramadol or cyclobenzaprine (sp) since she said i tried most other meds and since they didnt work. She didnt say anything else and basically said wait till you get to the pain clinic

I have a yeast and bacterial infection in my intestines and also have adrenal problems diagnosed with a saliva and blood tests.

Im gonna be treating the yeast and bacteria with an oxygen drink ive used before and that got rid of it + probiotics, and my ND/chiropractor said I could have the disc pressing on a nerve but it just isnt hitting when im laying down for an MRI and its only when im bending ect.... and then I hurt it and it flares up but I have no idea

Last edited by Agandaur; 06-12-2012 at 11:58 AM.

 
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Old 06-12-2012, 08:14 PM   #7
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Have any of these multitude of Dr.'s mentioned putting you on a daily preventitive headache med like Topomax?

 
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Old 06-13-2012, 12:40 AM   #8
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Quote:
Originally Posted by Agandaur View Post
I was on benzos for anxiety and I quit all of a sudden my doctor didnt tell me to wean down and i went through 2 weeks of hell, ever since that I havent been able to take benzos at all. If I do take them i freak out whenever I try to go to sleep, i start crying, i feel like im going to throw up, i start shaking ect... and it has been 6 months since ive touched a benzo i took 1 2 weeks ago and the same thing happened and it happened for about a week. So i know i cant take benzo muscle relaxers, dunno if there are any other kind. Ive been taking kava kava (dunno if its a muscle relaxer or not)


Yeah i have pain in my butt, hip and lower back and it runs down my leg also.

The headaches are constant usually 5 days a week and I wake up with em, and most of the time they are there until I go to bed, the only thing thats kept me sane was the pain meds, they helped enough so the headaches werent unbareable.

How do u get pituitary testing done?

Would it show up on an MRI or CT or is there blood work done, also can brain chemicals cause headaches like low seritonin ect.. and if so how can i get a test done on those, doctors keep telling me the dont test neurotransmitters they just treat based on symptoms.

Also I have low testosterone, 200 on scale of 300-800 at 26 years old

I did talk to a neurologist she said the only thing she could try is like tramadol or cyclobenzaprine (sp) since she said i tried most other meds and since they didnt work. She didnt say anything else and basically said wait till you get to the pain clinic

I have a yeast and bacterial infection in my intestines and also have adrenal problems diagnosed with a saliva and blood tests.

Im gonna be treating the yeast and bacteria with an oxygen drink ive used before and that got rid of it + probiotics, and my ND/chiropractor said I could have the disc pressing on a nerve but it just isnt hitting when im laying down for an MRI and its only when im bending ect.... and then I hurt it and it flares up but I have no idea
I am sorry that you are suffering. But to answer you question about testing in the pituitary. They see it through a MRI. I went through all kinds of test and they originally wasnt going to do a MRI because I had already had multiple CT scans that came back normal. Have you already have a MRI done and if so when was it? Hope that you get this taken care of. I know how bad migraines can be.

 
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Old 06-17-2012, 01:43 PM   #9
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Re: Chronic back pain and headaches pain doctor starting to not believe me

yeah mri of head it was fine, topomax doesnt help

 
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Old 06-18-2012, 09:40 PM   #10
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Re: Chronic back pain and headaches pain doctor starting to not believe me

There are quite a few other meds and treatments to try but you need a doctor who actually enjoys working with headache patients, which can be hard to find. For a neuro to only have two suggestions, even if you have tried a lot, is ridiculous. You may want to search the various online resources for headache specialists such as through the American Headache Association, The National Migraine Association, Migraine Research Foundation, etc.

And yes there are muscle relaxers that aren't benzos. Zanaflex and Flexeril are two popular ones. Interesting you say you have them five days a week...is their consistency to the two days on average don't you get them? Weekends? A headache log could be quite helpful. Rating your pain, noting what you eat, if there is a weather pattern in the area, etc.

You may also want to look into a new pain specialist that may be more willing to investigate and do something in addition to the pain meds. Also, be sure to tell your doctors and pharmacist about any supplements you take. Hope you find answers soon. Best wishes.
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Old 06-19-2012, 03:15 PM   #11
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Re: Chronic back pain and headaches pain doctor starting to not believe me

No pattern that i can figure out, it seems completely random.

Ive checked foods, msg ect..., not weather, not stress nothing really, caffine is one thing i did notice but its not the whole story. I think its hormonal because my gf is on birthcontrol and gets the same thing. I have low test which means high estrogen, aldesterone ect.. Im on androgel atm but its not havin an effect on the headaches. I have adrenal problems and hypothalamic problems too (uncornfirmed)

My brain does not adapt to changes well, if I take htp 5 ill have withdrawl from it when it wears off in 2 hours. I also have withdrawl after 3 days of pain med treatment. its been like that my whole life and when ive told doctors in the past they said im a druggie because you "CANT" have withdrawls from 3 10mg percocet a day for 3 days, its "IMPOSSIBLE" so I didnt bother telling this pain doctor because im not gonna deal with headaches for 6 more months while i try to find a new doctor i hate the fact i cant be honest with my doctors, same thing with my ativan, my doctor said no way you are having withdrawls after 3 months of 1 mg 2 times a day, he said im lieing..... and i went through 3 weeks of hell and I think the benzo withdrawl permanently damaged my brains GABA receptors

 
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Old 06-20-2012, 09:49 AM   #12
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Agandaur,

People become tolerant to benzos probably because their nerve cells respond by producing fewer receptors for GABA/benzos. This phenomenon, known as "down regulation", means that the number of "high affinity" GABA receptors decreases in response to the enhancement of GABA caused by the drug. Such homeostatic responses, which tend to reinstate the status quo despite the continued presence of drug, happen with many of the drugs that people take regularly, including alcohol, opiates and even beta blockers, which are widely prescribed for heart disease. The adaptation of behavior to overcome the actions of the drugs probably also contributes to tolerance. Whatever the mechanism, the development of tolerance sets the scene for withdrawal effects. At this stage, the removal of benzos, or even a reduction in dosage, exposes the altered state of the brain, with fewer "higher affinity" receptors for GABA to act upon.

The body responds to the continued presence of the drug with a series of adjustments that tend to overcome the drug effects. In the case of benzos, compensatory changes occur in the GABA and benzo receptors which become less responsive, so that the inhibitory actions of GABA and benzos are decreased. Depletion or deficiency of GABA (and also of vitamins, minerals and other amino acids) caused by benzo use and withdrawal is an erroneous and unscientific proposition.

Withdrawal symptoms from benzos (and this includes tolerance withdrawal symptoms while still on the drug) are caused by disruption to and hyper-excitability of the brain and nervous system. Because the nervous system is in a state of shock, recovery from this slow-to-reverse functional damage may take many, many months, and in some cases years. Although perfectly understandable, succumbing to the temptation to medicate the wide range of distressing, perplexing and often bizarre symptoms of benzo withdrawal with prescription or OTC medications, and supplements, may actually delay that recovery; it may even cause new problems.

In benzo withdrawal almost all the excitatory mechanisms in the nervous system go into overdrive and, until new adaptations to the drug-free state develop, the brain and peripheral nervous system are in a hyper-excitable state, and extremely vulnerable to stress.

"Compensatory changes occur in the GABA and benzodiazepine receptors which become less responsive, so that the inhibitory actions of GABA are decreased. Withdrawal symptoms occur if the benzodiazepine is reduced or stopped because the GABA receptors remain down-regulated (relatively unresponsive to GABA) for a long time."

There is no scientific or medical evidence that nutritional supplements such as vitamins, minerals, amino acids etc. are helpful in benzo withdrawal. Excessive doses of some can even be toxic. Nor is there any evidence that suggests benzo withdrawal causes vitamin, mineral or other deficiencies. Unless specifically directed by a Dr., nobody should take supplements for this purpose.

In particular, taking GABA precursors does not increase GABA concentrations in the brain. Benzos do not decrease GABA concentrations; instead they alter GABA-receptor affinity. This slowly reverses without the need for supplements and there is no evidence that supplements speed the process.

Your statement that, "I think the benzo withdrawl permanently damaged my brains GABA receptors" is highly unlikely, moreso it just takes quite a while for things to get back to normal.

Also even though it seems normal to compare a man and woman's hormone production and problems caused by such they don't work the same. So comparing your testosterone levels and the problems they may be causing to your GF's estrogen/BCPills and her issues is most likely not accurate.

Also another muscle relaxer that is not a Benzo is Soma.

Just because your body does not react normally to medications and has symptoms and malady's that are not easily explained it not a good reason to give up on Dr.'s and assume they'll all think you're a random drug user. We're not all the same and some of us do have more complicated matters than others. You need to go to a Dr./Hospital that is directed towards treating the more difficult to diagnose patient. There are specialty hospitals for these kinds of patients. I'm not sure where you live, but Johns Hopkins is one of these such Hospitals, Mayo Clinics are also geared more towards finding unknown disorders. The answers are out there, sometimes you just have to work harder to find them.

Kat

 
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Old 06-20-2012, 05:00 PM   #13
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Ok i hope it didnt permanently damage em.

I know using opitates can cause a permanent change in brain behavior in some people to where they cannot feel pleasure like they used to without opiates, it happened to several people I know who were on em for injuries, some ended up abusing em some didnt, but after being off of em for 3-4 years they said they still never feel the same as they did before its sad because what can ya do, if your in pain ya need em...but then they can do permanent damage.

thanks for the input I hope i find a good dr

 
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Old 06-20-2012, 06:20 PM   #14
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Once again you need to be very careful as to what you believe as medically tested fact verses what is conjecture.

Opiate/Narcotic abuse does not occur due to lack of ability to feel pleasure as that is not why you are on these medications in the first place, you are on these meds to stop pain which is not the same thing as feeling pleasure. Yes, years of Opiate/Narcotic use can and does cause physical dependence but that is a totally different thing than abuse.

I've been on narcotics/opioid medications for the last 26 years and I can assure you my pleasure centers are unaffected. My body is dependent on some of them, yet I am not addicted to any of them.

When in Pain Managment and taking narcotic or opioid medications it really is prudent to do your own extensive research on any and all medications that you are prescribed and have taken or will be taking for any length of time, so that you know what the long term affects might be.

There are many rumors and conjecture floating around out there about Pain Management and it's treatments and medications...the truth is really much more believable and interesting.

Take care,

Kathryn

 
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Old 06-20-2012, 06:54 PM   #15
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Re: Chronic back pain and headaches pain doctor starting to not believe me

Another thing to add was those of us taking medication for chronic pain...if you find yourself not feeling pleasure any more...or feeling "flat" or "numb"....then it may be good to just cut down on the dosages. Obviously with your Dr. helping..

So that is just one extra way to know that perhaps someone is on too much medication. As I am with Kat, I've been on some form of opiates (in addition to many other modalities), for many years now and I still have all my emotions in tact. I cry at Hallmark commercials and laugh to tears watching 30 Rock! LOL...

I have purposefully worked with my Dr. to always be on the absolute lowest amount of medication. I live with a 5-7 on the pain scale and that is using medication plus dozens of modalities from exercise to acupuncture to injections, etc.

 
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