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Old 02-26-2012, 06:32 PM   #16
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Re: Do I need to take medicine if my pain is moderate?

Moldova,

Sorry for replying late. No, I never did MRI of my hip. I did four times MRI on my back . Recently I did once on my right leg, but the result is normal . I hoped this MRI can find something on my leg but it didnít. Now I still did find any reason can explain my leg pain. Maybe just disc herniation caused some
kind of nerve damage. In this kind of situation . I donít think my insurance can let me do one more MRI on my hip. I need to wait. I donít know what is next .
I will see my Neurology on April 20. I will let you know if he give me any opinion.

Thanks!
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had herniated disc in L5 s1 five years ago, have
had persistent right leg until now.
have Osteoporosis, subacute thyroidits.

 
Old 02-27-2012, 08:12 AM   #17
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Re: Do I need to take medicine if my pain is moderate?

Efeng,
If you had MRI on lower levels of your spine, it would show your hip situation. This is how I found out that I have OA in my hip, and this is how I found out I have fluid on my lungs. Just had MRI for different levels of the spine, and by accident discovered all other trouble areas.

Nerve damages can be determent by nerve conducting tests, just make sure your Neurologist is good at this. I was told that out of 5 Neurologists only one who can "read" and perform this test right. Is in this frustrating?

But you absolutely right about disc; it can be the cause of your leg pain. Usually pain goes to the buttock (right in the middle, very deep pain), than to your thigh, and depends on the problem, pain can go either in front - or - side - or - back - or - inside your thigh to the knee (again either behind your knee, front of side or all together) and even down to the foot and toes.
I hope they will find the root of your problem, enough suffering!

All the best,
Moldova

 
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Old 02-27-2012, 04:56 PM   #18
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Re: Do I need to take medicine if my pain is moderate?

If I were you I would try my best to stay off any narcotic pain meds. Addictive and does the body alot of damage. But for some people like me, I have been on oxycontin for 12 years, narcotics was the only way to go back then. I am hoping they have some non narcotic pain meds other than what I tried 12 yrs ago that I can wean myself onto. So Good Luck and stay away from any narcotics if possible for your own sake. ~Blessings~

 
Old 02-28-2012, 01:26 PM   #19
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Re: Do I need to take medicine if my pain is moderate?

I cant give any advices not knowing exactly your health issues; only Doctor can determent damages done to your body, levels of your pain, etc. Only than DR can decide if you need any pain medications or not.
If you do have a choice, if you can live life with levels of your pain, if you have quality of life, if you can do what you must do in life without pain interference, than I would never go on any pain meds.

I agree with previous replay about it; personally I wish I would have a choice, but I don't. Even with high doses of Long acting and Break through opiates, I spend my life mostly sitting or in bed, but never by choice. I live with high levels of pain 24/7, my medicine gets constantly changed, doses changed all the time as well.

Another words, if you have a choice - you are OK. Deal with it as best as you can without going on opiates. Not every person who lives with them is addict, its all up to a person. More knowledge one has, more responsible one is - less chances for addictions. I am on them since 2006, and this had never been a problem for me.
But it not healthy for sure, and I bet we all can find another way to spend our $$$ than on medicine.

Smenok,
please forgive me for asking, but i wonder how come you on same Oxy for 12 years and it still working for you? Usually people who take opiates for prolong times, body tolerance develops and drugs stop working. Are you taking it as LA or BT? Most CP patients take both to keep pain under control. Just curious.

Thank you all
Moldova

 
Old 02-28-2012, 05:18 PM   #20
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Re: Do I need to take medicine if my pain is moderate?

I started with 20 mg of oxycontin and sometimes, more often than not I can still bear the pain but I do have to take 40 mg quite often. I know the damage opiates cause so I have been determined since day 1 not to increase the medication unless I absolutely have to. I do know most pain patients wind up increasing opiates more and more and more which may be one of the reasons my doctor does not believe me over these test. Perhaps my other meds have something to do with the way my system handles oxycontin. I do not know. I only know 100% his test were WRONG. and now I need to find out why before he cuts me off. I have several other medical conditions 2 which also cause quite a bit of pain. However NONE of them are as intense as the pain in both legs. My legs were burned 14 years ago in many places down to the bone. Extreme nerve damage and the pain is soooooooo unbarable. Thanks so much for your concern. Wish you had an answer for me though

 
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Old 02-29-2012, 09:10 AM   #21
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Re: Do I need to take medicine if my pain is moderate?

Smenok,
I feel for you dear! I just want to ask you, please forgive me, if you have this nerve for 14 years, why it still not diagnosed? I don't blame you, I know everyone is different, but listen to me here please.
When 15 years ago, I came to local RA Dr here, who has a "big" name and told him i was diagnosed with JRA at age 12, and now i suffer from pain, swolleness, fevers, etc. He dismissed me saying that it was when I was 12, now I dont think you have RA. I was young, wanted to trust your DR and kept going. Couple years later, I got very swollen ankle. I went to a foot Dr and he tells me: "Look at your hands, knees, face - you have whole body inflammation. Do you have RA by any chance?". I told him what I did couple years ago and how DR told me I dont have one, he suggested to go and see another RA, his friend, also locally.
I go full of hope; same thing. Not a blood work, nothing, but he said that if i would have RA for so many years, my hands already would be typically deformed.
Again I wait and dont go anywhere for couple years, suffering beyond believe. Forget pain, but to work 65 hr and more a week with fevers 24/7, swollen joints, exhausted all the time and no diagnoses or treatment.
Only in 2006, after my first failed spinal fusion, when I was under PM care (wonderful and knowledgeable DR at HSS) he suggested for me to see RA DR at same Hospital for special surgery. No more local doctors for me.
At first 2 hr app, I finally was diagnosed with severe, advanced RA + Lupus + MS. Unfortunately, by that time It was a lot of damages done to my body, irreversible. This is why I cant go in remission despite very harsh treatments, chemo therapy included.
I told you this story for a reason. I share this story with everyone who wants to hear and learn. I am not the only one who in same position. We have to be our own doctors sweet heart, unfortunately this is a reality. And dont put all your eggs on one basket. If you know in your heart something is not right, keep knock in the doors, keep seeing other Doctors (but not in same area, please where they know each other).
My husband lost his beloved aunt same way; she was going to one specialist to another complaining of bloating. They told her its in her head and that she eats a lot of fiber. Lady died from ovarian cancer at age 54.
I have a question for you now; if I understood your right, you take Oxycontin, right? Is in it a long acting one? I am on it too, but it must be taken as a part of a program, either every 6 hr or 8 hr (depends on RX) religiously, to keep your blood plasma at same levels, otherwise it useless. Oxy is not taken as BT opiates, it considered LA and it taken in addition to BT (for some Percocet, Oxycodon, etc. which you can take as needed, but not Oxy).
Another thing: your burning for 14 years - did you noticed any changes during these years to worse? The reason I am asking is: after my car accident and need of spinal fusion, I prolonged surgery as much as I could in fear of loosing my job, but than nerve damages occurred in my thighs, than legs, than feet, and finally I just couldn't walk, lost balance completely falling down every day, broke knee cup. My DR told me that nerve damages never stay the same, it gets worst and person ends up paralyzed. How would they let you go with severe nerve damages, like you said, knowing what is coming?
You go girl! You do what you have to do. Dont let them tell you everything is OK if you know for sure its not.

Wishing you all the best
Moldova

 
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Old 02-29-2012, 09:45 AM   #22
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Re: Do I need to take medicine if my pain is moderate?

Smenok,
I feel for you dear! I just want to ask you, please forgive me, if you have this nerve for 14 years, why it still not diagnosed? I don't blame you, I know everyone is different, but listen to me here please.
When 15 years ago, I came to local RA Dr here, who has a "big" name and told him i was diagnosed with JRA at age 12, and now i suffer from pain, swolleness, fevers, etc. He dismissed me saying that it was when I was 12, now I dont think you have RA. I was young, wanted to trust your DR and kept going. Couple years later, I got very swollen ankle. I went to a foot Dr and he tells me: "Look at your hands, knees, face - you have whole body inflammation. Do you have RA by any chance?". I told him what I did couple years ago and how DR told me I dont have one, he suggested to go and see another RA, his friend, also locally.
I go full of hope; same thing. Not a blood work, nothing, but he said that if i would have RA for so many years, my hands already would be typically deformed.
Again I wait and dont go anywhere for couple years, suffering beyond believe. Forget pain, but to work 65 hr and more a week with fevers 24/7, swollen joints, exhausted all the time and no diagnoses or treatment.
Only in 2006, after my first failed spinal fusion, when I was under PM care (wonderful and knowledgeable DR at HSS) he suggested for me to see RA DR at same Hospital for special surgery. No more local doctors for me.
At first 2 hr app, I finally was diagnosed with severe, advanced RA + Lupus + MS. Unfortunately, by that time It was a lot of damages done to my body, irreversible. This is why I cant go in remission despite very harsh treatments, chemo therapy included.
I told you this story for a reason. I share this story with everyone who wants to hear and learn. I am not the only one who in same position. We have to be our own doctors sweet heart, unfortunately this is a reality. And dont put all your eggs on one basket. If you know in your heart something is not right, keep knock in the doors, keep seeing other Doctors (but not in same area, please where they know each other).
My husband lost his beloved aunt same way; she was going to one specialist to another complaining of bloating. They told her its in her head and that she eats a lot of fiber. Lady died from ovarian cancer at age 54.
I have a question for you now; if I understood your right, you take Oxycontin, right? Is in it a long acting one? I am on it too, but it must be taken as a part of a program, either every 6 hr or 8 hr (depends on RX) religiously, to keep your blood plasma at same levels, otherwise it useless. Oxy is not taken as BT opiates, it considered LA and it taken in addition to BT (for some Percocet, Oxycodon, etc. which you can take as needed, but not Oxy).
Another thing: your burning for 14 years - did you noticed any changes during these years to worse? The reason I am asking is: after my car accident and need of spinal fusion, I prolonged surgery as much as I could in fear of loosing my job, but than nerve damages occurred in my thighs, than legs, than feet, and finally I just couldn't walk, lost balance completely falling down every day, broke knee cup. My DR told me that nerve damages never stay the same, it gets worst and person ends up paralyzed. How would they let you go with severe nerve damages, like you said, knowing what is coming?
You go girl! You do what you have to do. Dont let them tell you everything is OK if you know for sure its not.

Wishing you all the best
Moldova

 
Old 02-29-2012, 01:08 PM   #23
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Re: Do I need to take medicine if my pain is moderate?

Thank you for your reply. OK...In 1998 I had a bad accident. I was painting my kitchen (we lived in the country) when I ask a son to go to daddy's shop and get me some mineral spirits. He returned with a jug that looked similar except it was "MURATIC ACID". Long story short, I spilled it all over my legs. DAMN THAT HURT! It was several hours later at a 2nd hospital in Austin, (The first was a trauma center but they did not know what to do for me except give me morphine while the acid continued burning my legs). I husband was at work but once he joined me he carried me next door to a different hospital. There they tried to nutralize the acid but by then, several hours later, damage was done. Acid is a very bad thing. It ate my legs up, then they tried to debreed them which made them worse. I had damage in many places all the way to the bone. THIS IS WHAT I MEAN WHEN I SAY I HAVE BURNS TO MY LEGS. I nearly died, lost over half the blood in my body. It was really bad times.
After learning to walk again and months of therapy, I was weaned off morphine and percocet. TWO YEARS went by...I tried like heck to live a normal life, but this catches up after continuous sleepless nights due to pain. So MY doctor and I tried non narcotic medications. We found none that worked at that time.
I was against narcotics, but finally caved as the Pain was too intense. My legs were burned all the way to the bone in many places. The docs at the burn center were very surprised they filled in as much as they did. But the nerve damage is too severe. So I made up my mind 12 years ago that if I had to take narcotics, I would be extremely careful and take only the minimum needed to bare the pain and still live a some what normal life. I take 20 to 40 mg of oxycontin every 8 hours usually. The longest I have been able to go without is 12 hours. I hope this answers your questions. I DO understand that the majority of pain patients usually wind up increasing their meds over time. I do not know if it is other meds I take and the way my body matabolizes those meds that prevents me from increasing the dosage or what. But I am greatful I have not had to do this unlike so many of you. All I know is I need to find out WHY my original UA showed absolutely NO NARCOTICS in my system. This IS NOT POSSIBLE. And I am scared to death my doc is going to take me off my pain meds because of False lab work. He just as much said so. I Do not like ANYONE ELSE controlling my life except ME! And I just can not go back to that kind of daily pain. NO WAY. I am sooooo very sorry for all the pain you have been though both physically and mentally. It sounds just horrible. I have added you to my prayer list and will keep you there. Thanks so very much for your concern. ~Blessings~ PS> The doctors at the burn center never told me that nerve damage gets worse. However I was wondering about that because it does seem to be worse now...however I am on the oxycontin and have been for years so I was not certain. You are the first to say I might wind up crippled. Not good news but in a way, not surprising either.

Last edited by cmenok; 02-29-2012 at 01:18 PM. Reason: P

 
Old 02-29-2012, 02:09 PM   #24
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Re: Do I need to take medicine if my pain is moderate?

OMG, I am speechless. I am sorry, I know you are strong person, but I am not made out of iron, so I read what you just wrote and cry. Nothing to do with pity, just think what you went through, makes me cringe. I am so very sorry, I dont know what to say.

For some reason, I got an impression that your pain is coming from your spinal problems. I am sorry for misunderstanding dear person. In this event damaged nerves get worse. I also have Arachnoiditis due to complications during either surgery, dye in Myelogram or preservatives in epidurals. They dont know, but this condition causing severe scarring of spinal cord and nerves all over the body. Nothing works, no cure or treatment, gets worse every 4-6 month involving more and more nerves from organs, limbs, etc.
Now I know why they dont tell you that your nerve condition may get worse, your spine is not involved. Which is good, I am glad you stay at same status with your opiates. I hear you and trying hard to do same thing as much as I can handle. I am very strong person, have very high pain tolerance, but I gave in and went on opiates for good. I have no choice.
Even though I am on Oxy every 6 hr (40-40-50-50) as Long active meds, I am every 3-4 hr on BT (depends on medicine). But I am trying very hard not to change too often, not to increase too often. My PM always tells me if I cant handle, I must tell him to increase. The problem is, I have very bad body tolerance, I get used to medicine pretty fast and it stops working. But on the other hand, I dont want to get to the point where nothing else can work, like they call "Ceiling". So I go for slower if I can. Just yesterday I saw him at my monthly app, he said that my BP is too high (only due to pain, i have very low BP otherwise), I look too pail and walk terrible, so why not to go up? I said, I will wait another month, if I cant handle, will call him during this month.

Hard to say why your test showed you dont have drugs in your system. I read while ago on this site message from one person who had a big problem with her PM, he let her go. The thing is, when I have my urine/blood work done, it shows exactly amounts he Rx to me. His nurse explained to me that this is what they look for in patients. I am with him for 8 years, he trusts me completely, and I have to do this only once a year now, but I just wondered what are they looking for.
I dont understand why cant they re-do your test? See, I am not sure if you know, but this is become a very big problem. I used to go to see my PM every 3 month, it was great since I have to travel to NYC. But new rules and regulations changed this for our areas and now PM have to see their patients once a month to get their RX filled. I used to call his office every month and Rx was in my home in 2 days. No more
They feel if you Rx opiates and it not in your system, what do you do with them? Please, dont think I am judging or thinking something is going on, not my business, I know how many mistakes happen with labs. I am saying what some PM may think and to protect themselves they may concern about it.
Why wouldn't you request another test than? I think it's simple.

Here is another thought.
I came last year for my app and it was time for my urine test. I gave without any problems, and when I come home, his nurse calls me saying: BTW, you will have to have another urine test done (I almost fainted: why?), b/c I have.... bladder infection and labs couldn't have clear results. Due to low immune system (RA treatments do that) I must go on antibiotics for every little thing.
I have spinal cord injuries so I have bladder infections often without even knowing this, but would you believe that it can interfere with labs?
Are you sure it wasn't a case with you? Just my 2 cents, who knows?

I command you for being such strong individual, so many people for running nose take opiates, a little pain and instead of trying Motrin or Tylenol, they run for Percocet not fully understanding what can happen to them. Without proper knowledge, sense of responsibility, it can brake their lives. So you do the right thing. If you can handle your pain - stay were you are. If time comes and you cant handle anymore - than you have plenty of room to go up if needed.

Hugs to you dear. And again: I am very sorry to hear what happens to you. I hope you still can have good life quality and enjoy it as much as you can. Life is so short and so presses, is in it?
Moldova

 
Old 02-29-2012, 06:39 PM   #25
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Re: Do I need to take medicine if my pain is moderate?

Interesting you would mention bladder infections, I had one at the time of the first UA and had been on antibiotics just prior to the test. And I believe I did mention in my original post I insisted on another UA when I learned about the negative results of the first. He sent me to the same lab, next door to his office. The 2nd test came back showing narcotics in my system however it also showed I had pot in my system. I DO NOT SMOKE POT! So once again my test WERE WRONG and now my doctor doesn't believe me. So he gave me enough oxycontin until the 9th at which time I am to take a 3rd test. Meanwhile I am desperately searching online trying to find out why the first test was wrong. I have discovered one of my medications I take for acid reflux can cause false positives for pot. So now I just need answers for the first test. I believe the lab had to of mixed my UA up with another or contaminated it some how. He sent the original UA in for more detailed test to Florida, but it also came back negative for narcotics. THIS IS CRAZY! I honestly take my meds like I am suppose to. I just dont get it. I am so very sorry about your spinal cord injury. I would not want to be where you are. It is sad because the oxy has done alot of damage to my teeth over these years. I am currently under going over $10,000.00 in dental work. That may not sound like much to you New Yorkers, because the cost of living there is so much higher than here. However it is alot for an old rancher like me. LOL. Stay in touch and good luck to you. ~Blessings~

 
Old 03-02-2012, 01:59 PM   #26
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Re: Do I need to take medicine if my pain is moderate?

What I would do is this: print information about Acid Reflux meds can interfere with opiates test and show him. Whatever you can find - bring it to his attention.
Another thing: strange that he believes Lab so religiously. I had blood work done in January and it came back I have hepatitis B. I was panicking, my RA Dr was panicking, since I am on biologics for so long, it can trigger TB and Hepatitis. I called my GP and he said immediately: don't panic, they make tons of mistakes at the labs, lets repeat in a month.
It was done wrong and I never know who and how - you know what I mean?
I would understand if this test was coming back over and over with same thing, but it was only ones. I read on PM board couple years ago how one person said same thing: it came back that she smocks pot, but she never done it. But I remember her saying that she did a lot of research and realized that sometimes it may happen. I forgot what exactly her research showed, but when she brought to her PM attention, he really believed her. Just wonder why we do have to do our own research, instead of them knowing this stuff, is in it?

Good luck to you, keep me posted
Moldova

 
Old 03-03-2012, 08:49 AM   #27
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Re: Do I need to take medicine if my pain is moderate?

He is this ol country doc so I'm not so surprised. I really liked him before all this happened. He knew a friend of mine who died from cancer...in fact she is the one who recommended him. You know, he said about the post when I was denying smoking it..."Oh common now, you can tell us (him and his nurse), it will not leave this office." I swore on my life and my childrens lives...then he discussed this with me the following day in front of his entire office staff. People talk in these small towns...how can he say it will not leave his office? WHAt IS WORSE is it will be IN MY RECORDS so now any other doctor I try to find will hesitate. A few years ago the DA raided a doctor's office near the border of OKLAHOMA & ARKANSAS. He was charged as being a drug dealer and shut down. Since then doctors in both states have been under scrutiny. They are extremely nervous and hesitant to despense any narcotic even to patients like us who have no choice...that is except to LIVE IN PAIN. Before I found him many offices said up front "IF you are on pain killers we will not accept you as a patient." I am very upset. I do plan on printing out what I have learned online but I don't know if it will do any good. He already said "I shouldn't have written you the 2 week script"...BUT HE DID. So I have to think that maybe, just maybe somewhere deep inside he knows I am telling the truth. If I have to go "COLD TURKEY" I am going to ask for strong sleeping pills to knock me out until the worst is over...that is unless it will effect my COPD. I know I need to try to get off them and onto a non narcotic. DO YOU KNOW any NON NARCOTICS that work for severe nerve trauma and damage???

 
Old 06-30-2012, 08:36 AM   #28
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Re: Do I need to take medicine if my pain is moderate?

I think I should post a message here and close this thread. I saw my Neurology doctor on April 20 . He talked to me about my recently MRI and EMG which wanted to identify if my pain is caused by my leg self instead of that Lumber spine disc nerve is impressed . The two test results are negative . That means even there is no any test fact can support his idea. He said if I want to see a surgeon , I can go ahead to see one which can do a minimally invasive surgery .Actually I already saw 4-5 surgeons !. He only can let me try medicine and want me to try Elavil and take one tables 25mg at evening. I told him my pain is below 5 now if I need to use this kind of EM now . He said that is the only thing he can try.
I checked the Elavil is a group of drugs called tricyclic antidepressants. Elavil affects chemicals in the brain that may become unbalanced. But if I don’t take it , I have no another reason to see this doctor again. I want to know I will put myself under risk if I take it? Should I start to use OTC and which one I can try first?

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had herniated disc in L5 s1 five years ago, have
had persistent right leg until now.
have Osteoporosis, subacute thyroidits.

Last edited by efang; 06-30-2012 at 08:41 AM.

 
Old 07-17-2012, 11:23 AM   #29
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Re: Do I need to take medicine if my pain is moderate?

Quote:
Originally Posted by lifeaftr40 View Post
I take LA meds with BT meds if needed. I have learned when to take the BT meds so i am not chasing my pain. I live with constant pain and my meds bring me to a 4-6 on good days
Lifeaftr40,

I have a question to you when I review your message. What is BT meds ?
I have searched " BT meds" but only got Boday temperature medicine" Does BT meds only be used if needed like short action medicine or OTC Pain medicine ? Thank for your reply.
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had herniated disc in L5 s1 five years ago, have
had persistent right leg until now.
have Osteoporosis, subacute thyroidits.

Last edited by efang; 07-17-2012 at 11:26 AM.

 
Old 07-17-2012, 11:43 AM   #30
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Re: Do I need to take medicine if my pain is moderate?

BT= break through. "flair ups."

 
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