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The Chronic Pain Couch User Group
Do you ever worry?
About This Group:

This is a great site for anyone suffering from Chronic Pain or has a Family member or Friend who suffers. A place where you can tell your story, find others with similar conditions or pain, help someone in need, read up on the latest Chronic Pain treatments or simply sit for a while. Chronic Pain as we all know can be debilitating and relentless. It is not prejudice in any way, shape, or form. It can strike without warning and stay for life. The Chronic Pain Couch is a place designed for your comfort, and please note.. You don't have to suffer from chronic Pain to be a part of this community, we offer a variety of other topics as well. I truly hope that you will come and join us. And remember, there is never a need to worry whether or not your post has been read, a member or myself (Molly) are generally available to read and respond to all posts that come our way...... We are always here for you. Together We CAN Make A Difference in each others lives and how we manage day to day in coping with our relentless pain. Warmest regards, Mollyrae, founder of The Chronic Pain Couch.

Founded by Mollyrae on September 22, 2009
771 members
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Do you ever worry?

I ask this because I worry all the time about losing the ability of getting the meds I need. What if we had a catastrophy like katrina (not in the same sense) but something simular where we could not funtion as a society.

I don't know what has made me feel this way. It's become such a fear of mine. Does anyone else feel this way sometimes??
Tags: worry, feel
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19 Comments
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680303_tn?1239988440
Hi Mollyrae,

Thank you so much for inviting me. You raised a valid question and a big reason I would like to be off of everything.

I HATE that I am addicted physically to a drug. I used when I was young and am ashamed of myself but got off and became a health nut for about 27 years--since the late 70's when Jane Fonda was telling us to feel the burn. I worked out so much and walked so much and enjoyed every moment of it. I felt so alive. This July makes it 4 years of chronic pain and I don't want to be on anything. I weaned off of ativan and ultram. It isn't easy but doable and I would say takes about 1-2 months done slowly. One took I believe less than a month.

Every month, going through the hastle of getting the script and then my doctor will write on it, "don't fill until...." and it will always be the last minute and stress me out. I have had problems where they messed up and I felt like a druggie waiting for a connection. I am sick of it and for the past 2 days have decresed the dosage and want to get off because I hate going thru this. The ultram, was easy b/c I was able to reorder online and now that I'm off of it, he won't put me back on it, even though it does help when needed.

So, I can see it being a fear. And I am praying I can get off (which I did but was also on ultram and made it so easy, I was off in maybe 3 weeks).

I want my life back and may never get it, but I would love to see if I can handle nothing. Often, it feels like I took nothing anyway.

Thanks for starting this and I look forward for giving support and receiving. These past 4 years have been way too hard on myself and husband, who also has been going thru hell.

Talk to u soon. Bless u all.
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675718_tn?1321008971
i take pain meds that are natural !
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975514_tn?1325001538
Yes I worry all of the time. That's why I think I should have become a doctor LOL! I ended up going for business instead stupid me. Little did I know that I would end up knowing more than my doctor about the human body! Thanks for developing this wonderful place for us to vent about our horrible aches and pains. We certainly need it! I'll be in here a lot that's for sure!
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765775_tn?1366028291
My PCP prescribes all of my pain medication now and he is semi-retired. I worry what will happen to me once he retires for good. He shares a practice with his son so I guess I will move over to him, but I often wonder about it.

Because I have HBP and MVP my doctor wants me to remain with him to control my pain issues rather than go on to PM. He is worried that they will prescribe medication to me in PM that would interfere with my other medications. It has happened twice already with the Orthopedic Surgeons.

Also, as they say ""If it is not broken then don't fox it".
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168348_tn?1379360675
I keep a month ahead on my thyroid meds but this isn't possible with pain meds.  I cannot begin to think about the fear in this situation .. if I go just 3-4 days without my Mobic I usually end up in a major flare.   I know this because in the past 2yrs I've tried a trial off the meds to see if I still need them and found out the hard way the answer is "yes".

C~
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547368_tn?1332173665
Worry is my middle name...in case you didn't know, it's "Tuckamore Worry."

I worry that for some reason, not know to me, my prescribing physician will stop prescribing, she'll move away or goodness knows what could happen.

We are going to FL this winter for a trial, "Do we want to live here?" I worry that I will not find a physician that will prescribe for me. Even though my home state physician assures me that she will help me I worry that I will have to travel the 17-18 hundred or so miles back home to get my medications.  

I can't handle a day without pain medication. I would never get out of bed!! So yes I worry but it's nice to know I don't worry alone. Molly don't ask about all the other worries I carry on my back!! I'll never shut up!

Tuck
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535089_tn?1400677119
Cute Tuck.

I'm glad to see that I'm not the only one with worries. I thought I was being overly sensitive.
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680303_tn?1239988440
Hi, would you mind sharing with us your natural pain killers and may I ask are you in major pain?

I would love to find something that worked that was natural. And I would love to hear what you take. I haven't had any sucess with anything natural and thought maybe you could help us, if you have the time.

Thanks.


And, no Molly, it is a real fear. When it's a Friday afternoon and the dodctor's office is closing and I don't hear back from them, I am totally stressed knowing if I don't I won't have anything for days. My husband tells me, don't worry, how could I not? They have not given the proper prescription person my messages or she's been out or left for the day. There should be a better way. Worrying causes tension and tension more pain.
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535089_tn?1400677119
Hi Dylan:

I have horrible pain and the only thing that has worked for me is the Fentanyl Patch and Morphine for breakthrough. The Morphine is about as natural of an opiate as you can get. It's derived from a plant...not synthetic in any way. The only draw back is the constant drowsiness.

I am headed to the Doctor to see if I can't get a complete med change. I don't know what that might be but it's worth asking him.

I would also like to hear of more natural pain relief myself.

regards,
Molly
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387767_tn?1345875627
Hi everyone.  I have kind of a different problem.  I have not been able to find a doctor to take my pain seriously enough to even PRESCRIBE any pain meds.  They tell me *learn to live with it* *take Tylenol.*  I cannot take Advil/Motrin type drugs because of stomach ulcers.  I am given other things, but it doesn't help the pain, maybe slightly, but not much.  And, yes, I have been to pain management.  They tell me my back is degenerative and lose weight to help the arthritis.  I try, but I am unable to exercise because the pain gets worse and I have nothing to control it.  I'm too scared.

I feel trapped, hopeless and depressed.  I have a great fear of the pain because even on days when it's not as bad, I know what it's GOING to get to by the evening.  I do have sleeping medication which allows me to sleep for maybe 4-5 hours, not the whole night.   I have Xanax for my anxiety, which I hate taking and try not to use, and now they want to put me on an anti-depressant, but that will cause weight gain, which is the last thing I need.  The doctors contradict themselves, but don't care.
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405614_tn?1329147714
First, let me say that the best thing I got out of Pain Management classes and other therapy, is Meditation.  If you can really get into it, it does indeed reduce pain, stress, and the lousy combination of the two.

That being said, I've had a hard time getting into my meditation lately, with all the issues I have going on.  I keep promising myself that I'll do it, even put Thich Nhat Hahn meditation CDs on my Ipod, but you know how it goes...

I've been concerned about the medication thing, too.  I lost one kind of insurance a few years back, and had to scramble to get necessary medications through Patient Assistance Programs, which only worked because I have a wonderful PCP.

I'm on SSD, have been since 1996.  I pay for MedAdvantage, and get extra help through the state for my Rxs, though some aren't covered.  So far, I've had no problem with my Vicodin, Lyrica (though they limit how many capsules I get a month), Valium, Ambien, and now Tegretol for nerve pain.

Here in Oregon so far, these meds are refillable for 6 months, and I order them as soon as possible (when I have 7 days supply left) and often have the filled a few days early.  I've built up a little cushion in case of my PCP's medical assistant messing up my refills as she's done several times, or a change in insurance, or the laws on how often the Rxs can be refilled.  I've heard that things are changing in other states, like Virginia.

I also worry that my PCP will get burnt out and quit.  The doctor I had before her did.  My PCP is smart, and shares her schedule with another PCP so that they don't both have to work all week.  They cover for each other's patients in urgent appt. situations.  The back-up PCP wrote me a large Rx for Tegretol when I went in with horrible nerve pain from my right waist down to my toes.  I had it originally prescribed for trigeminal neuralgia, which luckily doesn't flare up very often.

Cindee, I feel for you.  I have degenerative joint disease in my spine, am overweight, and can't tolerate antiinflammatories.  I had many doctors tell me to live with it, take tylenol, see a psychiatrist, etc.  Finally, I found doctors that believe in compassionate care.

Is it possible for you to find another doctor?  Do you have access to a pool to do some exercise in, even just walking back and forth through the water?  Have you ever tried meditation?  Antidepressants can actually help pain, as well as the depression that often comes with it.  

I tried several that didn't work for me, but found that meditation and having had tried the meds and the pain management helped my PCP feel justified in prescribing other pain medications.  I actually managed to lose over 100 pounds, though my neurological stuff including fatigue as helped me put about 40 back on.  I won't lose hope, and I hope you don't either.

I think this will be a great place to help support each other.

Thanks to Mollyrae for inviting me to join!

Kathy

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387767_tn?1345875627
Thank you so much for your caring response to my post.  I worked out for 30 years, 5 days a week and also walking and yard work.  It was only when I turned 50 that the pain became unbearable and my knees got bad that I started to cut back (I'm 53). But since January, I haven't been able to do anything because of my back and the shooting pain I get down my hips and legs.

Yes, I did do some water aerobics and light swimming, and bike.  But it doesn't seem to matter what it is, my back can't take it.  I gave up in January.  I try to be as active as I can around the house and take my dog for short walks and work in my garden.

I am giving this latest rheumatologist a chance, then I will look for ANOTHER doctor.  It does get exhausting.
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680303_tn?1239988440
Hi Mollyrae,

Thanks for answering. I wish you luck in a complete change, have any ideas what to change to? I know they say to change every so often. Let us know how it goes. I still don't think we are exactly chocked full of choices.

I don't know for sure if I can manage without anything honestly, but I'm going day by day. I was taking less this week then got real sick out of nowhere, then felt like I was detoxing. I hate that feeling more than anything.

As far as getting a 6 month refill, wow!! that has to be a relief. I had a 5 mth refill with ultram but that's only b/c it's considered a non narcotic.

Now, I would love to be on nothing but I still can't find anything that really helps. As light as the ultram is, it does help at times. With the pain I have, the morphine doesn't always help.

Hi Cindee, funny ( not really) seeing you here. I have DDD, stenosis, foraminal and biforaminal stenosis and every disk is bulged. I was like you-- an exercise nut and it is like giving up a part of yourself. I try doing things on the ball with dumbells and ankle weights but my house was filled with so much equipment, it is sad. I want my life back too. I will never understand how your doctor could think otc meds will help. Many doctors are just so uninformed, stubborn and proud. One is lucky to find one to go along with you. Ours is getting better, but in reality hasn't helped. It's been 4 years of pain.

Mollyrae, this was a good idea, even to vent, toss ideas off each other. Thanks.

Blessings all.  
    
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655875_tn?1295698707
I'm extremely worried about this right now.  I'm so scared I will not get the help I need.  
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662972_tn?1270169901
I to am real worried about that but I guess something we have not to much control over what would a person do I mean I would feel like dying w/out me meds and not to mention the w/d that is so scary
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535089_tn?1400677119
Hi Holliee and All:

I think that Holliee hit close to home for many of us. I really feel that it's not just the pain that we are worried about being in ALL the time but the fact that we would have to face the big W/D issue. I know it would be horrible for many of us and me personally....
I don't know if I would survive the two.

Oh, what a terrible thought......

Molly

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680303_tn?1239988440
I am having such a hard time, One person quit ct and I never had a big problem tapering. I am now. I have pain, so it's not a matter of taking these pills for fun, I got off ativan, ultram and others with less of a problem. It keeps feeling even the slightest reduction, that I'm withdrawing, I am going to try again and not give up. If they were a great help it would be different. So, it seems the only pills I can take are the ones so many have put a bad name on--ultram. I never felt like I was detoxing on them, I don't know what is going on with my body, but I feel miserable. Wish me luck. Thanks,
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680303_tn?1239988440
After all the withdrawals I have done, they were tapering. If done slow, it is not terrible. For some reason, I am having a hard time with this one, but I'm not giving up.

Try not to be so afraid. Most doctors agree, about 1 pill or less a week is good, maybe about 1/4 less every 4 days or whatever you are comfortable with. It has worked for me.

I would never ct/ The people who do and go to work, amaze me!

We can all do it, if our minds are there to do it.  
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765775_tn?1366028291
I have been off the forum for the last few days so I just read your post here this morning. I noticed that you live in NJ as do I. I suspect that your doctors are hesitant to prescribe pain medication to you because they may feel you have depression and opiates can cause or increase depression symptoms.

However, if you have degenerative disc disease no doctor should be telling you that you "should just learn to live with it."

I suggest that you request a copy of all of your medical records to see if one of your doctors has written something in them that is preventing other doctors from prescribing any pain medication to you. I have relatives that take anti-depressant medications and are prescribed pain medication for their orthopedic issues so I am guessing that one of your doctors has listed something in your medical records that is preventing you from getting prescribed something that will help you.

A prescription for Ultram (tramadol) would work better for you than having to take all of that acetaminophen.

I don't know what part of NJ you live in but there is a doctor's name I could give you that worked well for me with my back injuries. He is located down in Little Silver, NJ and does his procedures at Jersey Shore Medical Center. He will take a good look at what you have going on and give you epidural or facet injections in the hospital to see if that helps you. I am sure he would prescribe some type of pain medication to you if your discs are as bad as mine are.

Of all of my orthopedic problems, I have my back under control the best although I am experiencing a flair up since Thursday right now. I have herniation's and a bulge located at L4-L5 and L5-S1. Years ago when I first went for treatment to this doctor they were degenerative as you describe yours and I got the injections. The first series worked well for my pain but I later had an allergic reaction to something in the mixture so they were no longer an option for me.

  
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