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Adrienne Dellwo

Pain, Panic & Medication Mix-Ups with Fibromyalgia

By February 25, 2013

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I'm going to be honest - I'm pretty much a huge mess right now. I'm hurting. I had an emotional melt-down earlier. I feel mentally wrung out. I'm dealing with serious frustration and fear.

On top of what's been an extremely stressful and exhausting month, I've been having issues getting the medications I depend on to manage my pain: Vicodin (hydrocodone), Flexeril (cyclobenzaprine), and methotrexate (which I take for inflammatory arthritis.)

Two things are going on. When it comes to the Vicodin and Flexeril, the problem is that I have a new primary doctor. There's apparently some glitch in the process that's causing prescription refill requests from my pharmacy to go unacknowledged by her office. She's not turning them down, she's simply not responding at all. Last month, it was my thyroid hormone and blood pressure meds that were delayed, and this month it was my pain killers and muscle relaxers.

Since I've been on the methotrexate, which has only been for a few months, I haven't needed the Vicodin and Flexeril nearly as much. However, because of my recent stress level, I've needed them more - and I've been out. I've been getting more and more nervous about that.

Then I put in a methotrexate refill request and it was rejected by my rheumatologist. I'd just been to see her three weeks ago and had labs done to check my liver function (which is mandatory with this drug,) and the letter from her said the labs were good and to proceed with the dosage increase we'd discussed. So you can see why I was confused when the pharmacy said, "Your doctor says you need to have a re-check on your December labs." I talked to the nurse and reminded her that I'd just had them done and she said, "The doctor wants you to have them done again."

Methotraxate is a once-a-week drug, and I got this information two days before I was supposed to take it - except that, because of the dosage increase I implemented two weeks ago, I don't have a full dosage. I let the nurse know that, and she assured me that if I got right down to the lab, we'd get it taken care of in time. I did. I heard nothing the next day, then called her a couple of times the day I was supposed to take the drug and still heard nothing.

So here I sit, with my hands and feet puffing up. My left hip is on fire and sending burning tendrils down my leg and into my foot. My neck muscles are clenched tight and I've got a headache.

But the physical part isn't the worst of it. I'm frustrated. I'm scared. I've been in a panic and crying twice.

What happens is that when we're lucky enough to find something that works, it changes our lives for the better. When it's ripped away from us, we suddenly see everything we've gained back crumbling away. It's terrifying.

Even though I know I will get all of my meds at some point, I also know I could be facing some real issues over the next week. When I first started on the methotrexate, I had some side effects that were really unpleasant and, fortunately, went away. This little break, though, could mean that I have to go through some of that again. I really don't want the headaches and mouth sores and other things to come back. I just want the meds that make me functional.

Like I said, right now I'm a huge hurty mess. For someone with fibromyalgia, I know I'm spoiled - I've found a great set of treatments that work for me and keep me between 60-85% functional. The arthritis (my newest diagnosis) was knocking me down to about 50%, but the methotrexate bumped me back up. Call me selfish, but I don't want to be back on the roller coaster, and I especially don't want to be there because my doctors can't keep my meds straight!

Have you gone through problems like this? Have you had drugs that worked ripped away from you? Do you worry about losing your meds? Leave your comments below!

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Comments
February 25, 2013 at 9:13 am
(1) DFWmom says:

Oh yes. More than familiar with this issue. I am fed up with the tyranny of the medical community, including, or in particular, the FDA. Another problem we had was doctors who won’t fill out the forms and get them sent in, when we needed forms for school.

When a person with fibromyalgia seems to always have it perfectly under control, it makes me wonder what I am doing wrong that we are still constantly struggling with it. I would never want you to go through what you are going through right now. But, I thank you for sharing your experience.

February 25, 2013 at 9:16 am
(2) DFWmom says:

It’s possible this doctor won’t work out. I’ll only put up with so much of what you’re experiencing, before I’ll fire the doctor and find someone who can communicate and get things done in a timely manner.

February 25, 2013 at 9:57 am
(3) B. says:

Don’t be a victim. Trash the unresponsive MD and find someone who will work with you. With the FDA dictating what medications we can use and how much can be prescribed, as well as ever-increasing state regulations, we need to advocate for ourselves!

February 25, 2013 at 10:17 am
(4) Charlayne says:

Sounds like time to find a new doc. This one is not paying attention to her patients. If you want to stay with her, I would schedule an appointment strictly to go in and talk about what you expect from her, how you want to be treated, and your expectations on care, staff response, etc. If she doesn’t agree with you, or if she agrees but doesn’t fulfill the expectations, I would write her a letter, essentially firing her, keep a copy (so you are not accused of “doctor shopping for drugs”) and have it sent certified mail. Then get the records from her and go to another doc.

I’ve had to do this a couple of times with a couple of specialists. It bites when you have to start all over again. But, you have to be your own advocate.

February 25, 2013 at 10:26 am
(5) Rhonda says:

The problem I’ve been having is not so much with the doctors,since some of Obamacare has taken effect it is getting insurance to pay for the meds,ones they did pay for now will not.Good luck to all

February 25, 2013 at 10:40 am
(6) Raschell Zipp says:

Yes, I have experienced problems with my medications getting filled and in a timely manner. I have dumped my doctors and staff because of it. I can’t afford to miss medication that causes set backs and neither should you. The doctors and staff are not the ones who have to go through it what we do. I will write them up in a complaint or call to complain to the person in charge. This is unacceptable!

February 25, 2013 at 2:48 pm
(7) m2c says:

I am always terrified when something goes wrong with getting my medications. I take a lot of medications for my fibromyalgia and the associated depression and anxiety. I think this new decision by the FDA to make hydrocodone harder to get are ridiculous. Many patients take their medications as directed and responsibly–I do.

Having a doctor who is unresponsive is just not acceptable. But of course, I know from experience we don’t always have the luxury of choosing our own doctor. Some insurances, such as Kaiser, don’t give you a big choice of doctors.

February 25, 2013 at 5:04 pm
(8) cowgirl says:

Get a doctor that will listen to you and HELP. it took me a while to find one that pays attention and is willing to try everything all different treatments.

Also, i’ve recently been reading on foods that may be hinder those of us with arthritis – nightshade foods. gonna try that for a while. every little bit helps.

February 25, 2013 at 5:44 pm
(9) Elizabeth says:

Yes, I’ve had similar issues. It’s so frustrating dealing with a new Dr and the worry that comes along with whether or not they will take us, our pain, and the condition that causes it seriously. I hope they get their act together an get it straightened out quickly and become consistent. **big hug**

February 25, 2013 at 7:13 pm
(10) Abot Bensussen says:

I am still able to get my Oxycodone now. I use a low dosage, `15, five times a day. However I used to be able to get hydrocodone for break through pain, and that isn’t an option anymore.

This Dr. is my psychiatrist, a sleep specialist, he prescribes after I fired my pain dr. who was told by my insurance to prescribe morphine for me. I hated how it made me feel. Now I cannot get the time release Oxycontin, which I used for years, I can use the Oxycodone, every 5 hours, as I’m awake around the clock.

Now that I don’t have hydracodone anymore, I’ll need to use more oxycodone. During flares. We cannot function wihout our pain meds, pain gels, and sleeping help. I use Xyrem for sleep and it knocks me out. Just being able to sleep has reorganized my digestion problems.

This problem with pain meds is from the very top, FDA, and the govern. who are afraid of illegal usage. Why we patients are punished is so unfair.

February 26, 2013 at 2:43 am
(11) Rosemary Lee says:

I’m not surprised but I am appalled. What happened to “do no harm?” It makes me furious when doctors don’t even bother to think about the effects of their decision. I’ll keep you in my prayers and hopefully you’ll get back on track with your medications. Is there a way to let them know that what they consider a small “delay” can wreak havoc on our physical & emotional well-being.

Rosemary Lee
Seeking Equilibrium

February 27, 2013 at 12:07 am
(12) fogmom says:

I’m sorry to hear about your increase in pain. I’ve been taking Savella for a few years now. I started on a low dose and worked my way upwards until I found a dosage that worked. In the beginning I found it took some time and then the side affects went away. For me it has been a life saver most of the time.

With it I can get by with Vicodin and other meds. I have had the same problem with getting refills power outage causing the lost refill requests(or that was the excuse), But in all honesty when I am feeling better and don’t need my full dose of pain meds or I am sick and can’t keep my meds down I hoard the extra just in case. I know it is a no no but when I can be assured no one is going to screw up or not be available when I need them I’ll stop it. I just don’t want to spend another day lying on my bed with tears running down my face because every inch of my body hurts. I think we all have had days like that. My point being use every chance you get to pad your meds so you have some extras for when they screw up. Notice I didn’t say if. Remember Drs and Pharmacists are just people and they have bad days too. You have to police your meds just in case someone makes a mistake. Now I’m rambling.

February 27, 2013 at 12:32 pm
(13) Marc V says:

I understand what you going through, it is one of the worst parts of being disabled. Having Multiple Sclerosis and Fibromyalgia, I have run into many, many prescription problems. I’ve personally been hospitalized once because when going onto Medicade, everything is initially denied, even if its for gambapentin or Oxycodone. I have had SO MANY problems with Medicade that I’ve given up, if they deny me my drugs becuase the system is a joke, just go to the hospital. There is no reason why we should havee to suffer because our medical system is a bag of sad sh**. Staying positive in the face of daily pain is a lie, we just have to stop caring on a real significant level. 99% of people dont understand and more than half of them dont care, so dont be silent about our issues. Be loud, and dont care.

February 28, 2013 at 9:19 am
(14) Shawna says:

I’ve had more than a few run-ins with Dr.s that want you to come in after you were JUST there and refills not getting through between the pharmacy and Dr.s office. Once it was the pill that made me sleep and I went a few nights without sleeping- talk about crazy stress!

2 things have helped me- I put my pills on “automatic refill” with the pharmacy so they fill them whether I call or not. The other thing is a bit harder to do- but possible with flexeril and others you don’t take every day. Start hoarding. Call for a refill when the refill is due, even though you have some left. Always keep some back for emergencies just like this.
I know you can’t do that on pills that are tightly regulated- basically we are all screwed when it comes to those. But some of the ones you hold back can help you through a rough spot.

March 1, 2013 at 3:56 pm
(15) shastadaisy says:

I know exactly how you feel. I have problems every year when I get a new prescription for provigil (now modifinal). Since it’s a controlled substance, and very expensive, I have to get special permission sent from my doctor to the insurance company, and then I wind up paying a fortune ($700) for my first prescrition for the year. It’s very sad that it cost so much for medication that you cannot exist without. I cannot run the rist of falling asleep at the wheel while driving to work. I need to be able to function when I do get to work. Insurance companies and drug companies have everyone under their control. And it’s only going to get worse!

March 1, 2013 at 4:08 pm
(16) MK Gilbert says:

So sorry to hear of your frustrations! Hope things are looking up for you now! I’ve also had a terrible month with depression/stress. We’re also having financial problems and I just worry so much I can hardly sleep~no insurance and was hoping to get taxes done early so we can apply for medical assistance~but taxes aren’t done, things have gone from bad to worse and if I don’t apply for the free prescriptions soon I will run out of my cymbalta which I am a total basket case without! It barely keeps me functional during the winter, but anything else they’ve tried has just made me more depressed/anxious or both! Have had no consistency in MD’s since moving almost 2 yrs ago~I go to Behav Health where I can see the Dr (who’s an arrogant jerk!) for free as long as i go to “counseling” which is just unloading on the young girl who gives no advise really at all! I like her and the PA but have been so frustrated/discouraged that I’ve missed my last few appts~both the PA and my “regular” Dr (whom I’ve seen a few times) have suggested I look into ECT which terrifies me! They want to iinduce 6-9 grand mal seizures to “reset” my brain, which can cause memory loss. If this year is as bad as last I will definitely go for it, as I was severely depressed for at least 9 months, and the other few were just “blaa”. The memory loss scares me~I’m taking a class working towards my ESL certificate so I can teach English as a second language, and my memory/concentration is bad enough already~I don’t need it getting worse! On the bright side, tho, I’m gettin an A in my second semester of Chinese, which I really enjoy and gets me out of the house 4 days/week plus I’ve started lap swimming several times/week (when I’m not sick!) I grew up overseas, so the Chinese comes back real well, but learning the characters, even tho they’re “simplified” is rather difficult! Hang in there, all my fibro/fatigue mates, and never, never, never give in or give up fighting for better health!

March 1, 2013 at 4:23 pm
(17) SR says:

Yes yes yes….and there seems to be no end to the vicious circle!

March 1, 2013 at 4:43 pm
(18) Shannon says:

Doctors get paid on visits, not with phone calls. So if you are forced to physically go in to the office for refills or “follow ups” after already having agreed to a treatment, then you know your doctor is simply pumping the system to get paid more.

IF you can, find another doctor. I don’t know about all the people who have already replied here, I don’t know how they think one can just go and “choose” another doctor. At least in Canada it doesn’t work that way!!

In Ontario for sure, you have to send in a letter and formally “fire” your doctor. After the Powers That Be receive your formal notification, and reply that they have, THEN you are “allowed” to look for another doctor.

Finding one to take you on, however, is another story. NO doctor I have spoken to wants to take on a chronic pain patient. So I am left to do as well as I can with the closest walk in clinic. I get very cursory and brisk treatment. Enough to find out what I want, process it, and get me out of there for another patient.

There is NOTHING personable about the health care I now “enjoy”. Since my doctor of some 7 years packed her bags and moved to Alberta – because of how health care in Ontario is going down the drain – I am now at the mercy of whoever I get in the walk in clinic. The expectation is I should be glad to get any treatment at all.

This is not health care. This is health SCARE. Take what you can get and like it, or get nothing at all. Too bad for you, we’ve got better things to do than worry about how poorly Canadians are treated by “FREE” health care. We are all freeloaders just looking for a handout, after all.

This is not health care.

March 1, 2013 at 4:47 pm
(19) Annika0001 says:

I’m so sorry you are going through all this frustration, flair-ups and pain. I have fibromyalgia and have been where you are.

It’s not bad to want to have control over your pain – especially if you have had some control and had it taken away. You have a right to not feel pain! The doctors would feel the same way if they were in your shoes.

I’ve had issues with getting medications refilled on time – it’s quite awful! To have pain and not know when or if you will be able to have relief from it is a special kind of hell that I wish on no one.

The only way that I could find to remedy that was to go to a pain specialist and not depend on my primary care doctor for my fibromyalgia medications. My primary doctor was just not able to treat fibromyalgia but the pain specialist was and is.

I have to go to the pain specialist every month for my meds – but I have never had any issues with getting them because of this. Some months they are ok with me skipping my visits. My pain specialist is great! Unfortunately, he is super busy and some months I have to see his associates – they are not so great but I deal with it.

March 1, 2013 at 4:56 pm
(20) Wendy says:

Believe it or not this just happened to me in the past month! I was at a new pain clinic for only a month and a half, when suddenly they called and stated suddenly they didn’t take my insurance and are cancelling the rest of my appointments that were scheduled, which included my first monthly appointment for medication management (I was only given a 15 day script at the end of January and had another appointment for mid-February of Tramadol), an appointment for TPIs, part 2 of a sleep study and an appointment for my sciatica epidural! Over the past month, I have gotten my Explanation of Benefits paperwork from my insurance and my insurance is paying everything! Just not in the time frame the clinic wanted! So, I was kicked out…days before my tramadol was going to run out! I had to call my PCP quickly, knowing he would help me. He filled my tramadol and stated to NOT pay any bills that I get from them because of their treatment of me. It disturbed him greatly. Now I have to wait until the end of April for an appointment with my new pain doc!!! Thank goodness I have a great PCP who is willing to help in the meantime.

March 1, 2013 at 5:22 pm
(21) Cindy says:

OMG yes, My old Dr. it would take them 7-9 days to get my drugs in. By then I was insane with pain. I got to the point where I felt like my Dr. was playing games with me. I had constant problems with my doctor.
After going threw lots of crap, I finally found a Dr. I can work with. Thanks God! It’s terrifying to go threw that I know. I was never sure I was even going to get my drugs. I know just what you are going threw.

March 1, 2013 at 9:57 pm
(22) Nan says:

I am a nurse and agree it’s time to get a new doctor…. and the doctor needs to find a new nurse; one who will advocate for their patients. New doctor to you or not, it’s inexcusable behavior! I’m so sorry for all you are going through right now. Please know we’re all

March 1, 2013 at 10:26 pm
(23) Renae says:

I know how you feel! I worked in the medical field for many years before becoming disabled. Jokes are made about fibromyalgia all day long. It is considered a mental disorder and an addiction to pain medications disorder. Its neither one of those but unless you walk this path you have no concept. A doctor has no way of judging your pain. Pain is subjective and only the person feeling it can judge how bad it actually is. I know there are people that become addicted to medications but that should be expected. A doctor should trust what a patient says they feel is what they feel. The FDA is a real big reason we can’t get the medications we need. I have a friend who is a psychiatrist and her DEA number was taken away because she had a patient who was forging prescriptions in her name. Is that her fault? No. Now the DEA is saying that she has to go in a program before she can get her ID number back. This is hurting all the patients that she treats and makes her look uncapable of providing good care. My doctor suddenly wont refill my medications because I asked her once if I could have a medication for breakthrough pain. Next time it was refill time I got told I had to see her first. I went and she changed my medications telling me all of the sudden that she feels that they are not working and that I am just getting a little “high” on them. She changed me to a slow release drug called Opana and it does very little to relieve my pain. I was taking 20 motrin tablets a day and was at risk of kedney damage. I have switched to extra strength tylenol but have to be careful how much I take. Looking at having to continue to fight for what I need is very depressing. My hope is that one day ALL doctors will recognize that what we suffer is real.

March 1, 2013 at 10:33 pm
(24) Wendy the ta2dlady says:

Adrienne, I was so sorry to learn of the difficulties you are having and the resultant flares/stress/upsets which all just make the pain worse.
When i visited Ireland last year, for some reason i miscounted my Nucynta ER (a class2 drug)and wound up two days short. My daughter fed-exed me 28 of them ($80!!!! to fed ex the package to Ireland!) and was honest in labeling the contents of the container. And don’t you know, the package of medications got hung up in Customs in Ireland! (presumably, they are still on Customs.) I never received my meds. I am very fortunate that I am not addicted to the Nucynta-I just had an awful flare but did not go through withdrawal at the same time, which would have been the worst. I did have more than enough Norco to help with the flare. Lesson learned-to count and recount the number of pills i will need when traveling anywhere.
Sending you gentle hugs.
Wendy

March 1, 2013 at 10:38 pm
(25) sue says:

You know, I was on celebrex for 10 years for the pain and everything else for different symptoms. It has ruined my pancreas.

Now, I take vitamin b12 and coq10 for energy, vitamin d for fatigue and vitamin e for pain in addition to a multiple and b-complex – the dosages are key but I’m not on any pain relievers.

The pain, at times, knocks me out but I endure it till I have a good day and I HAVE to get a decent night’s sleep even if it involves staying in bed till my body is fully rested.

Try it!

March 1, 2013 at 10:41 pm
(26) Nitalynn says:

This is one thing that makes me very angry. I would never abuse my medications because the last thing I would ever want would be my doctor to feel he/or she could not truse me to take them properly. From talking to other’s with fibro I am pretty sure I am not alone in this either. And yet at the drop of a hat some medical professionals would consign those of us with fibromyalgia to the dustbin label drug addicts without a second look at any amount of scientific data about the validity of our illness. Because of others with drug addiction we are made to suffer if we can’t get in to the pharmacy within just a few days of when we got our perscription filled the previous month. There is never a “grace period” for us and if we kick up too much of a fuss there is that “drug addict” whip to hold over us to keep us in line. No we are not “spoiled” Adrienne! Abused maybe to the point that we have to act perfectly to our medical advisors maybe in some Stocklome syndrome sort of way but definately not spoiled!

March 1, 2013 at 11:00 pm
(27) Kathy says:

I “teasingly” tell my doctors they hold me hostage when it comes to my medicine refills. I too get the routine comment from my pharmacy that the dr won’t refill without an office visit. Ok so yes some bloodwork is vital and that’s not the problem. I see so many doctors and regardless of the fact I had blood work done to check my kidneys, liver etc they all want to “make sure” all is ok prior to filling the meds. The problem is you have to make an appointment which generally is several weeks out to see your specialist and this is done without the medicine being refilled for those you take that say on the instructions “do not stop these unless under a doctors care”. Ok so now what????? Sorry you are having this trouble too and hope your meds get straightened out sooner then later.

March 1, 2013 at 11:50 pm
(28) skygrannie says:

Dear Adrienne, I am so very sorry that you have been going through such absolutely horrendous episode due to Drs & the stress they cause when they fail to realize what their own paranoia about drug use does to those of us who suffer from this unrelenting illness!!! I keep my original diagnoses from my rheum that first diagnosd me and worked with me to find the right meds to bring some relief. I have, what would be termed, extreme fibro. It never lets up for more than a day or two, but the pain never goes away. Having meds refilled on a timely basis is essential for all of us, it is what helps us to have a measure of normalcy in our lives. Whenever I go through a change of drs I pull out my original records and ask them to read it before they start trying me on any new meds…because its already been tried!! That usually does the trick and no problems arise. I did have refill problems recently, but when I saw my rheum on my visit to her, she asked if all was good with my med refills and when I told her I waited a few days to a week for them, she excused herself and walked out to her office staff. She lit into them and warned that it better not happen again for any of her patients!!! I was amazed, they were in shock and so far, now more problems with my meds. I am proactive in my trtmnts, I count my meds and keep very close track of when and how many i take. I think that one very important task is what helps my drs realize I do not abuse my meds and that i take them responsibly. So Adrienne, I hope you are doing better and your problems are finally resolved. If not, take your records to a new dr, insist they read them and then have a conversation about how they will help YOU manage your illness with the regimen that has consistantly worked for you. Warm Hugs to all!

March 2, 2013 at 12:46 am
(29) Cindy H says:

Adrienne, you aren’t spoiled; none of us are. People should not be made to feel guilty or spoiled when they are asking for the legitimate care they need. Its hardly wrong to want the right prescriptions you need to feel as normal and as functional as you can. We work and pay into the system, whether it is with taxes, social security, or paying for insurance coverage. When a person comes down with a disabling condition aren’t these programs supposed to be there when we NEED them. Yet we are made to feel guilty in any number of ways for wanting to be taken care of properly even though we’ve paid into these systems that were designed to take care of us.
I lost access to Soma, a muscle relaxer, when I moved from one care region to another. Soma isn’t on the approved prescription list where I move to as it is feared people will misuse it. I have two great primary care providers who put in exemptions to for me to be able to have Soma on two separate occasions. They were turned down both times. The second time the board recommended I be put on Cymbalta which left me with a dangerously high heartbeat. So I was put back on my regular anti-depressant and was left with hydrocodone as my only real means of pain relief and control of muscle spasms. I’ve tried other pain/muscle relaxer meds yet either they didn’t work or left me with bad side effects.
As a part of my self-care, I’m starting a correspondence meditation/mindfulness course with the Insight Meditation Center as a means of learning to deal better with stress, anxiety, and pain .Solid research backs up the efficacy of such techniques. I also have PTSD which was made worse by fibro. Hopefully by learning mindfulness, meditation, and help when I need it, it will help both conditions. I’m trying every reasonable means of having as much control over my health as I can. Adrienne, you are in my prayers. Take care and thank you for being the wonderful resource and help you are for us. Blessings always!

March 2, 2013 at 4:53 am
(30) sally says:

I agree that at times our own doctors screw up. It’s like pulling teeth sometimes even though one has been taking the meds for a while.
I blame a lot of it on the system and addicts. Feels like the system is raging war on the wrong people “real patients. ”

Hope you feel better.

March 2, 2013 at 8:16 am
(31) Edana_Daithi says:

It took almost 8 years working with my Internist, Psychiatrist, Rheumatologist, Nephrologist, and Neurologist, to get a program going which allowed me a bit of function and life. Then I had to move out of state to one of the most restrictive states in the union as far as Narcotics. It has taken almost 4 years to get back to square one. I had given up hope until the state Medical Association got me an appointment with a leading, (legitimate) Pain Clinic.

This doctor gave up his lunch time to see me for the first time, and took one look at me and said, “you have to be one of the most under medicated people I have seen”. He put me on MS Contin for a main pain killer and left the Methadose for BT. I still see the variety of doctors above, but now feel I have some control over my meds. My PM by the way encourages getting a little stash in case of emergencies. So when I have a day that I am not in terrible pain I will put back an MS Contin to save for a day that something does not go right. We live in a very small town and drive 100 miles to see most of my specialists, A few are in a town 40 miles fom here, but most involve a whole day to see a doctor..
I too resent the interference of the DEA with legitimate patients who need narcotic drugs to control pain. This state is so strict that you cannot take one pill out to take mid day. You must have the whole bottle so if the police stop you, they can count the pills. Fortunately my doctor puts, “as needed” on most of my meds, so the police cannot really count anything but the MS Contin. i really wish the DEA would get back to looking for criminals, which some are admittedly practicing medicine and selling the drugs on the side, and leave the people who need the drugs alone. We have enough to deal with and worry about without the added stress of whether or not we will get our meds this month,

March 2, 2013 at 10:12 am
(32) Mary says:

You have my sympathy as I have noticed that it is geting harder to get meds that were easier to get before. But, I am concerned after reading your letter, and others, that you are using pain meds that are very dangerous and addicting.
I seldom judge anyone’s use of pain medication. How do we describe how very painful this illness is to doctors?
If you need that much medication each day then you have to consider other life choices IMHO. Prescription meds are kiillng, many thousands of people who are taking them for the same real pain that you are experiancing. But, these drugs are so very dangerous and this has not been mentioned here.
You are not the person you used to be and pain can be handled in other ways. The time to find these ways is not in the middle of a stressful period. But small changes help. The most help I have found has been with a physical therapist who understands the illness. I also have arthritis,FMS and a number of other illnesses. I have had this illness for twenty years and could no longer work.I have learned how to deep breath and decrease my pain. But I do a number of things. It is HARD but I do not want to NOT wake up some morning because of these drugs.
I do hope all of you are feeling better today. I am not judging you, I am trying to warn you that you are in real danger. Yes, I know you are not stupid but you might think you are an exception. Sadly, a lot of smart people are not getting up in the morning and leaving their loved ones due to the medications i am seeing here.

March 2, 2013 at 10:34 am
(33) Susan says:

When I had to change doctors after a move my doctor here decided I was a drug addict and took all my pain management meds away from me. I live in a rural area where there isn’t a big choice of doctors so have had to go with the best of the pick. I went from being 85 percent functional to absolutely unable to function. I don’t know what I can do about it. Changing doctors is not an option unless I’m willing to drive 100 miles. And I’m sure he has in my records that I’m an addict so what good would it do to change doctors anyway. It’s just WR”oNG!

March 3, 2013 at 1:10 pm
(34) Antonette says:

You better used to not getting pain meds ! The federal drug rules are worse than ever now, b/c of all the overdoses in the street on percs, vicodin etc. All MASS doctors are getting audited for Class 2 drugs. You have to figjht tooth & nail for anything, anything even TRAMADOL. Which barely works.
\
I’ve been suffeeing since 1968, but started getting treated in 1999. I’ve been called ” a med seeker in every place I go; pain clinics, doctors, hospitals. I want to reach out & wring their egoistic necks !!!

I’m 66 a nurse, and no drug addict. But drug addicts are of an epidemic proportion now in Mass. I get radail freq. ablations, trigger points ( to no avial). I’m so damn mad at the medical society treatment of we patients !!! Good Luck to all who suffer here. ANTONETTE ROYCE RNC BS CS/Paralegal

March 3, 2013 at 3:56 pm
(35) Darla says:

Adriane,

I can totally relate to what you are going through…I used to think it was only my dr. that has dropped the ball; the pharmacy I go to did so as well. I take a rarer form/dosage of insulin. The pharmacy I go to only had me and one other person who uses that kind. I decided to transfer that particular medicine to another pharmacy, because my original one could not get my medicane for a week. Then I called and found a pharmacy that had it so that pharmacy called the original one to get the prescription. My son went to get it because I had already gone two days without and my blood surgars were over 700. I didn’t check the dose and strength because I trusted the pharmicies. My blood sugars would not go down and I ended up at the hospital. Longer story short, a week went by and finally my doctor called me back and in discussing the situation we figured out that the pharmacy gave me the wrong meds. Now it was actually the original pharmacy that messed up by giving the 2nd pharmacy the wrong med. ifno…now had the nurse at my doctors office returned my call I would not have run out and put in the situation . At least not the problems I had during the week. I went into anxety and panc attacks, I could not think clearly, etc. Two months after all this happened I was put on administrative leave, as my work was saying I was not meeting the standards for my job. Quite frankly I don’t know how I had been doing my job well for the last two years. I have had several occassions where the docotrs office did not call back on the same day and had to go a day or two without the medicine and yes I had to go through the side effects again. I take so many med (23 different kinds) which makes it hard to keep track of the refills for each so I have to write it down. I will keep you in my prayers so you won’t have to have a hard time adjusting to the meds again. Take care and keep sharing with us; we will support you and listen when you need to vent. Darla

March 4, 2013 at 11:47 am
(36) Mary says:

I have been having problems getting my sleep and muscle relaxer meds filled since the first of the year. I am retired and at the mercy of medical and my retirement insurance. They have decided that they won’t cover those two meds. I went through hell trying out other drugs to replace them and finally challenged the insurance and was allowed to go back on the sleep meds but the Soma was denied. The Doctor said they are not allowed to prescribe it anymore. The powers that be hold our lives in their hands and there is not much we can do about it.

March 4, 2013 at 11:47 am
(37) Mary says:

I have been having problems getting my sleep and muscle relaxer meds filled since the first of the year. I am retired and at the mercy of medical and my retirement insurance. They have decided that they won’t cover those two meds. I went through hell trying out other drugs to replace them and finally challenged the insurance and was allowed to go back on the sleep meds but the Soma was denied. The Doctor said they are not allowed to prescribe it anymore. The powers that be hold our lives in their hands and there is not much we can do about it.

March 5, 2013 at 9:29 pm
(38) C says:

I feel for you regarding the mix ups that you’ve been experiencing. For myself, it’s been more the docs writing the prescriptions wrong. This has been straightened out now for the part but for a while it was rather annoying and disconcerting. Especially since, they groan at you for asking them to do yet another job even though you are not the one responsible for the mix up. *doh*

March 6, 2013 at 11:51 pm
(39) Ness422 says:

Been there! I had a mix up with my neurontin a few years back. I was out for 2 days….2 of the worst days of my life! I feel like a druggie when i need a refill. I am only given just enough to get ne thru the month…bit months with 31 days don’t matter to the pharmacy. If i call in a Rx a few days early, it’s rejected because I must be trying to get more than I need. And if i wait til 2 days before, sometimes the rx isn’t ready. And i totally screwed if the Refill day lands on the weekend. I feel like i am forced to hoard any extra pills I can because I know I’ll be in a pinch with that med eventually.

So frustrating!

March 7, 2013 at 10:43 am
(40) Debora says:

I do understand how you feel. Last month was painful for me too and I had simuliar medication issues, It would be wonderful if the doctors understood just how frigle our lives are.

March 8, 2013 at 7:05 pm
(41) Di says:

I live in Portugal and was diagnosed with fibromyalgia 2 years ago. I don t recognise the name of the medicines you gays speak. I was prescribed lots of meds which do nothing. Now i m trying cymbalta. Still to much pain…i m 39 and my body feels 80…

March 8, 2013 at 10:46 pm
(42) Maurine says:

It is not your doctor ignoring your prescription refill. In January the advisary board to the FDA advised the FDA to move Vicodin into schedule II instead of schedule III of the DEA’s handbook, so that now you have to go to your doctors office and get a new prescription each month. NO MORE REFILLS. I just researched it because my doctor would not refill my prescription either. It is going to cost a lot of money if we have to have a doctors appointment each month just to get a refill on meds.

March 9, 2013 at 11:09 am
(43) Cynthia Wiebelhaus says:

Very frightened about losing meds and doctor’s support with new Obamacare. It already takes 2 months to see my Rheumy. Doctor’s will be in short supply.

March 10, 2013 at 6:51 am
(44) shar says:

take it from someone who has been taking meds. for bipolar and menopause and now osteo, fibro and herniated discs (22 years). my pharmicist(s) are more informative than most of my doctors. and they are available to consult and make suggestions. i’m not saying that they can prescribe meds. they also inform you as to new procedures and policies regarding provincial/state regulations. they also advise as to what generic meds are available if it’s being a heavy financial burden. they also contact me if i’m getting low and need new refill so that it’s not last minute. maybe i’m lucky that way but i found that i had to be pro-active and questioned everything. my doctor now wants a staples easy button for my visits!!

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