What a Ride: The Wave of Withdrawals

First I must state that I am so very lucky to have found a doctor that’s not only compassionate, he knows his medicine. He knows about fibromyalgia, and is PROACTIVE and has seriously started to TREAT ME. Unlike the typical 6-8 minutes with the doctor, “so how’s the pain?” Well, it still sucks. I hurt all the time. “Well, here’s your prescription for Tramadol, see you in six months,” my doctor spends TIME with me. I get to email him and I get replies within a few hours. From him. Not a nurse. From my doctor.

But I know all too well that my situation is NOT THE NORM. I know personally what it’s like to be treated like a pill-seeking drug addict, guilty until proven innocent (i.e., those unconstitutional drug tests – that I must PAY FOR), I know what it’s like to be shamed and cut off from my meds – just like that. A snap of a finger. Although my pharmacists have NEVER treated me like a druggie, I know from reading other’s experiences where some refuse to fill the valid script! Or shame them in front of other customers! We in chronic pain are not the problem, but we’re treated as if we’re the solution, by making folks pee in a cup, or show up – get this – within the hour of being called – with their prescription bottle to count the pills.

The war on pills is never going to succeed, just like the war on drugs. Is it any more difficult to get weed? Pills? Heroin? Meth? Cocaine? Ummmmmmmmm, NO. I use cannabis to relieve my pain, stimulate my appetite, and help me sleep, and have done so for over a decade. It’s no more difficult to obtain today than 10 years ago. As a matter of fact, the plant has been developed stronger, and better. What I’m trying to say is, the junkies out there? Will continue to steal pills to sell them on the street. They will obtain the pills just as easily as they did before.

But those of us with chronic pain? We pay their price.  …

Wow. That was supposed to be a short and sweet introduction to what I really wanted to talk about. Ha! My new doctor, the one who knows his shit, figured out immediately – on my first visit – that my combination of meds were not effective in treating my fibromyalgia. He drew a picture showing how all of the different meds work together. I was on the wrong combination – and had been – for the last decade. So let’s start switching meds, but only one at a time. So the first to go was the wicked Tramadol.

Those that have told us that Tramadol is not addictive certainly have never taken the drug. Not addictive? I’ll tell you what happens when you wean off of Tramadol: a non joy ride through mood swings, panic attacks, frustrating insomnia, night sweats, terrible irritable bitchiness, sadness, depression, and utter lethargy. As in can’t keep my eyes open, until it’s 3:00 a.m. and then I’m up. Up up up up up up with pain pain pain pain pain pain pain pain pain

Finally, it ended. After several months, the wave of withdrawals from the wicked, evil Tramadol subsided. About fricking time. Now I could switch to a different medication, and after several dosage adjustments, it’s working. I feel much – oh so much – better. So the switch to one med got me off of two.

As I told my doctor, after losing my mind – like not knowing words – and gaining 15 pounds in three months without changing eating habits, AND while exercising at least an hour per day, it’s time to get off the even more wicked, evil, oh-so-deceptive Lyrica. From what I’ve read, I’m in for a heck of a ride. This stuff? I have to wean off of very carefully – and not as quickly as I did the Tramadol. Doc agreed. I will follow the weaning schedule, just so I can switch to another med.

Now I forgot my train of thought. This happens quite frequently – yet another reason to rid my body of wicked, evil Lyrica. This drug actually did lessen the pain signals in my body, and it’s a shame the side effects are so awful. Just yet another medicine I’ve tried.

Frickin’ frackin’ here we go again. Fasten your seat belts and hold onto the bars.

The Fears of a Chronic Pain Sufferer

What if I cannot get another prescription for my hydrocodone measly 5 mg. for my pain? What if my doctor won’t change my prescription for a larger dose that might actually kick my pain? What if I can’t get any pills between now and when  finally see a pain management doctor in December? What if I have to take that mandatory drug test and get a dirty result for THC, even though I plan to quit 45 days in advance? What if I can’t ever get pain pills after that?

What if the pharmacy flags me as a drug seeker because of all the prescriptions I have (including the narcotics)? What if my previous doctor (that I fired!) sends my records before I ever meet the pain doctor and screws me over?

What if I have to suffer this pain without any marijuana OR pain pills?

Why should I have to worry about the ability to get a prescription for a well-documented case of pain that I have suffered over 20 years? Why should I be presumed guilty and have to submit to, in my opinion, unconstitutional drug tests, just to receive a prescription to help me live? Do I have to do that for my blood pressure medicine? Do diabetes patients have to pee in a cup to get their insulin? Why are we treated like drug addicts? Why do physicians, nurses, and even pharmacists treat some people like drug seekers when all they do is suffer from constant pain? What if that becomes me?

Why should I have any of these questions?

WHY?

Sick of Being Sick of Being Sick …

It’s a never-ending cycle, I might get a few days where I feel okay (because feeling GOOD is a rare day indeed), but most days I wake up and by the time I get to the coffee machine, I say to myself, “I feel like shit. I’m tired of feeling this way. I’m sick of being sick.” Almost every single day I utter these phrases. I used to wake up and say, “I feel like shit.” My hubby pointed out, “but you say that every day.” Does he become immune to my constant utterance of “I’m sick of being sick of being tired …” each and every day? Do I become complacent with feeling this way?

In a sense, I think some of that is true for both of us. While my dear hubby is a super compassionate person, and he certainly tries to be compassionate about my never-ending pain cycle, he certainly doesn’t KNOW my pain. I don’t want him to know it. I have almost accepted that this is my way of life. I’m going to wake up most days and feel like shit. That’s just my life.

As I’ve mentioned in previous posts, I’ve joined pain/fibromyalgia forums on Facebook, and I get depressed reading about other people’s depression, and how they feel like shit, and about how badly they’re treated at pain doctors, or rhematologists, or whatever doctor, when you’re not treated with compassion by your own doctor, face it, you are SCREWED. And sadly, most chronic pain patients are at the bad end of the shaft. From the doctor (“it’s all in your head,” “if you weren’t fat you wouldn’t be in pain,”) to the pharmacist, the stories I have read horrify me. That’s what I face. I’ve already had my own terrible experience with my rhematologist, and instead of putting up with her cruel treatment, I fired her. It felt good to send a letter that I was no longer a patient! Now I have to wait until December to see a pain management doctor. In the meantime, it’s up to my primary physician. Will she give me another two prescriptions in the meantime for my pain pills? And oh my, since Hydrocodone is rescheduled, can we change it to something that might just kick my pain? I mean 5 mg. of hydrocodone just doesn’t kill the pain. It does make life more bearable, but not better.

Trust me, if I could choose between feeling good or taking pills? I’d go for the feeling good! Please don’t treat me like a drug addict. Just treat me with compassion.

Because I’m sick of being sick of being tired all the time.

sigh

It Stinks Around Here

While no leisurely time to post lately, I’ve read way too many horror stories about the way people have been treated trying to obtain pain prescriptions for their LEGITIMATE pain. I know in my case, the fibromyalgia is an invisible disease, as you certainly cannot look at me and know that right now, I’m almost in tears, I hurt so much. But my doctor can tell, MRIs and Xrays don’t lie. A neck fusion surgery doesn’t lie. Getting Toradol shots, going to physical therapy, weekly massages, they all don’t lie. Pain doesn’t lie. WE DON’T LIE. I’d like to suggest, if a doctor cannot establish enough of a rapport with his/her patient to be able to discern whether or not their pain is REAL and very much PAINFUL, then that doc isn’t worth a darn. I’d also like to suggest that if a doctor is more fearful of the DEA and says, “I’m not writing you a prescription because I don’t want to lose my license,” and won’t treat YOU – the PATIENT – it’s time for the doctor to put away the pen and the prescription pad. Yep, close your doors. Find a different way of life. Just like some like to say, “snap out of it!” I’d like to counter, if you really think that I could just snap away my pain, why in the heck didn’t I just do that years ago?!? Do you think I’d like to remain in pain? Oh heck no. No, no, no.

Do you think my pain will ever end? Nope, no matter what the pain pills are, the pain is NEVER LEAVING. My fibromyalgia will never improve, it will never leave, it will ALWAYS BE WITH ME. Yep, my constant unwanted partner, my ever growing pain, right along side me for the REST OF MY LIFE. I try not to dwell on that, just reading it is depressing. deep heavy sigh

So, with that said, I’d like to suggest to all: don’t EVER judge a person by their outward appearance. Just because you can’t see fibromyalgia written all over me, I have a real disease, with real pain, that really sucks. Treat me with compassion, and please, please don’t suggest that “a little exercise will make you feel better,” “have you tried Tylenol PM?” (oh my, my eyes just dropped out the back of my head), or “you’re going to become addicted to those!” If I had eyes in my sockets, they’d fall out again. I’m not asking you to feel my pain, just to treat me like you’d treat anybody else.

Because I? Am way stronger than my pain. But I? have a very low tolerance for bullshit, which unfortunately, those of us in chronic pain? We get way more than our load of crap.

… I don’t know any way to end this than to say, “Gosh, it stinks around here!”

My “Dear Doctor” Fiasco Horror Story Turns Happy!

Since I began this blog just a little over two weeks ago, I have learned so much from not only my fellow bloggers, but from Twitter folks, and especially from Facebook groups dealing with chronic pain and/or fibromyalgia. I have learned that we all have the same stories, just our symptoms differ. What we all have in common are horror stories about how we’re treated by either the medical community, some of our own doctors, pharmacists, and even family and friends. On the other hand, I’ve also learned that we all share hope, concern, compassion, and care for one another. Thankfully, the good always outweighs the bad. And hope always, always prevails.

So if you read my last post, the letter that I wrote to my rheumatologist, you might be wondering what happened. I was so nervous to approach her, because I had only seen her twice. Both times, she typed in her computer, rarely making eye contact. Although she was helpful in explaining certain things, and changing some of my meds, I should have trusted my gut instinct: that I really didn’t know her, and thus, to tread lightly with what I’d tell her. But I’m an honest person. I went to my appointment and proceeded to read her the letter. Halfway through, I started crying. She continued typing away, she didn’t say anything until I was finished.

“I can answer some of your questions,” she said. “No, I do not support the use of marijuana in any sense, and not for medicinal use. Furthermore, if medical marijuana is passed here in Florida, I would never prescribe it.” She then proceeded to shame me for my use of marijuana, and that if I had a dirty UA after this initial drug test, that she would kick me out of her practice. And, I would be drug tested every 2-4 weeks continually, regardless if my next screen came up negative. Why didn’t I tell her initially? Well, I didn’t know her! But I’m coming clean now.

“There is no reason you shouldn’t be clean after three weeks of stopping,” she said. She said that more than once, insinuating that I was lying. So the result of that letter was: no prescription for my meds, and a thoroughly detailed (I’m sure) account of my letter in my records. Remember, she typed the ENTIRE time. When I told her I had an appointment with a pain management specialist in December, she told me that under no circumstances would this other doctor treat me with THC in my system. I MUST swear to her that under no circumstances would I continue my use. I said I couldn’t do that, although I would continue not using it in order to have a clean UA. I continued to explain that what she was prescribing wasn’t even cutting down on the pain, so why should I promise not to use the other, if it DID help? She mentioned that the pain doctor COULD prescribe other meds, which WOULD help me. In that case, yes, I’d be willing to continue not using marijuana.

I left her office in tears, totally struck down. I continued to cry all day, feeling lost and without any hope. If she wouldn’t even prescribe Tramadol (which is now a scheduled drug, too), what could I do? How in the world would I get any relief ever? But several hours after swollen eyes and a crushed soul, I thought, I really need to talk to my own primary physician and tell her what happened. After all, I have a rapport with her, I can trust her, I can talk to her. In the evening, I had to take my son to an appointment, and it just so happened we were talking to a psychologist. I mentioned to her that I had fibro and had a really crappy day, I was in tears again. After my son left the room, she said, “I want to know about your fibromyalgia. What is going on?” So I proceeded to tell her the nightmare I had just lived.

“How DARE that doctor treat you like that?!?” she exclaimed. “She had absolutely no right to shame you that way. As a doctor, she NEVER should have treated you that way!” I told her I had an appointment with my primary the next day. She suggested that I start my conversation with, “I have something I really need to talk to you about, but I need to do it ‘off the record.'” She said if my doctor was keen, she’d know what I was talking about (the marijuana use). I said that I believed I could be honest with her without repercussions, unlike with that other doctor.

Long story short, my primary physician spent an hour and a half talking to me. She was indeed receptive, indeed compassionate, and never once did she make me feel like a drug addict like that other one did. I even asked her, “In all the time that I’ve been your patient, have I EVER given you the impression that I’m a drug addict?” She shook her head no, and said, “absolutely not.” Furthermore, she too, said the other doctor had no right to treat me like that, to insinuate that I was lying, and that I should end my patient status with that practice.

My doctor had no problem taking over my care, that she would be able to prescribe everything that the other doctor did. She would not subject me to drug tests, and she commended me for my honesty. I think she learned several things from me, because I told her some of the information I had learned. I told her about this blog, and how therapeutic it was for me to write. I think I’m a good writer, and I am touched when people tell me “this is me, this is how I feel, but you write it so well.” I am touched when I can spread some hope among us.

So even though my primary did not advocate my former use (or future use) of marijuana, she did express that if we could get me to the pain management doctor clean, that perhaps he could get me to the point where I wouldn’t feel the need to turn to the other. He just might be able to! And for that, I’m willing to be clean.

This all happened this past Wednesday and Thursday. I discovered that if I use my inner strength, that I can persevere through ANYTHING. And with a great primary doctor, I’ve got one in my corner cheering me on.

There IS hope. Spread the word!

P.S. I’ve continued my at-home drug tests, and after 27 days, I’m still testing positive. Even though I could use, I still haven’t. I’m kind of curious to see when I’ll be truly clean! Of course, when my lab tests return, I’ll know exactly how much was left in my system. How dare that other doctor insinuate I was lying! If she knew anything about marijuana use, she’d KNOW that it takes 1-2 months for THC to leave a “chronic” user. Sheesh, I know more about it than she did. And THAT? Is a shame.

Dear Doctor

Dear Doctor,

I’m going to come clean with you. Actually, I’ve tried to be clean, because I know I’m going to have to submit to a urine test. So I’m going to be totally honest with you and pray this doesn’t backfire on me. When I do that urine test, I’m pretty sure there’s going to be a positive result for THC in my metabolites. But I can assure you that I have not used marijuana in over three weeks. I’ve been trying to be clean in order to get my prescription for hydrocodone. So I’ve had to do without both my pills for most of the past month, and the marijuana.

Since I’ve come clean, I have suffered the pain tremendously. I didn’t realize just how much a part that marijuana played in making me feel less pain. See, there’s never a day that I’m pain free. When I take one of the hydrocodones by itself, yes, the pain is a little less intense, but perhaps I’m not taking a large enough dose. After all, you do have me on the lowest dosage. But when I took a pill and used marijuana, I actually felt almost “normal.” What’s normal? Well, I mean what it must feel like to be a person who doesn’t suffer from intense pain. All the time. All the blasted time. So when I stopped using marijuana, and had to mete out those pills, there were days I could barely function.

I have become very frustrated. I started a blog about my pain. I wrote a manifesto, which actually started that blog. I found out there are hundreds of people just like me, suffering from chronic pain, unable to obtain the pain relief we so desperately want. What we desperately need. We just want pain relief and respect. I started sharing my story, and I’ve become somewhat of an activist. I think that marijuana should be legalized, particularly for medicinal purposes. I learned that this plant has been used close to 5,000 years to help ease medical maladies. It’s been proven to help with so many things. I know it helps me. How?

After I stopped marijuana, the insomnia kicked in. Doctor, you know that in my case of having fibromyalgia, that’s the worst thing that can happen to me. I usually can’t fall asleep until after 3:30 a.m. I’m working on a huge deadline at work, and it’s awful hard to focus and concentrate when I’m in a mental fog because of lack of sleep. This is the worst part, because the lack of sleep also makes me irritable, depressed, and angry. I’m angry because I’m in a situation where I cannot get pain relief, although I know it’s out there. I’m afraid when you get back that positive test result, you’re going to either cut off my medication, or refuse to see me anymore.

But you have helped me. You’re the first doctor willing to treat me for my condition. You’re the first one to write a pain prescription for me. You haven’t treated me like a drug addict. You’re the one that told me about the release Tramadol, so instead of popping four pills a day and going on a yo-yo of pain, I’m taking only the one in the morning. That helped somewhat. And the Lyrica you prescribed, that does help, too. But when I reach the late afternoon (even when I did use marijuana), the pain creeps back in. Maybe I need a higher dosage of the hydrocodone and/or the Lyrica.

I’d like to sleep again, but I don’t want to take Ambien, Xanax, or any other prescription. I know that marijuana is my natural sleep aid. I’d rather do something natural than add to my ever-growing medicine cabinet.

Another thing marijuana helps me with is my appetite. Most of the time now I’m nauseated, and I have absolutely no appetite. It’s hard for me to eat. And I like food! I like to cook! And bake! But now I barely have the energy, and I’m in too much pain to really want to do anything. I’ve already lost eight pounds. Not that that’s a bad thing, because I could be thinner. My point is, I’m not trying to lose weight. It’s coming off because I barely eat. Have you ever been able to eat when you’re nauseated?

I want to have an appetite again, but I don’t want another prescription. I’d rather use my natural remedy, the marijuana plant.

I’m wondering where you stand on medical marijuana, especially because we have that on the ballot this November election here in Florida. How do you feel about marijuana use? Do you know what cannabis cures? Do you support the initiative? If so, will you help me obtain medical marijuana? Because if recent polls indicate anything, and because of the dialogs I’ve had with other folks here, the initiative should pass overwhelmingly. I really do want to know how you feel about this issue. After all, you’re the one and only doctor willing to treat my pain right now. My primary doctor referred me to you because she knew you could help me, and she herself is fearful of the DEA.

Because I haven’t had many conversations with you, I hope you understand my hesitation in talking to you earlier. Sometimes I wish I could have gone in and talked to you, to get your advice, to know what’s going to happen after I take that drug test. You currently are my lifeline to living a life with lessened pain. I know it’s never going to go away, but it IS treatable. It can be more bearable.

So Doctor, when the lab notifies you that there’s THC in my system, please, please, please believe me and my words. I give you my honest word that I have not touched, nor looked, at marijuana for over three weeks. I don’t want to wait any longer to find out what happens. There’s a good chance you’re not going to write me any new prescriptions because of that THC. Because of the DEA. I know they’ve made it more difficult for you to treat us chronic pain patients. But I do plead with you that you treat me with compassion, and that you do not withhold my pain relief. I hope you’re willing to TREAT me, like you have in the past. After all, I’ve shown absolutely NO signs of drug abuse, you even have that written in my records. This was going to be, I believe, only the third prescription in six months (now it’s seven), that I was going to pick up. I have not abused my pills. And I’m not an abuser just because I used marijuana.

I did what I could to survive with my pain. It’s with me always. It will be with me until the day I die. I can live with that if I can have lessened pain. Please help me doctor. HELP me. Understand me. Believe me.

I have not used marijuana in weeks. I desperately need that pain prescription. I want to feel “normal” again. Do you understand?

There, I came clean. And I tried my best to be clean.

Thank you,
Your Patient

Spread the Truth, Not Scare Tactics

Yesterday I suffered from a fibromyalgia flare, where suddenly I had lost all energy, felt like I was going to pass out, and my entire being screamed in agony. The only thing that helped was sleep. Because I’m down to a measly few pills, I have to mete them out carefully. I knew if yesterday was bad, there would be another day it would be worse. Remember, I’ve been suffering from this for well over 20 years. I know what to expect, unfortunately.

So I did without any pain relief. (And cried several times, although crying doesn’t make the situation any better, it just makes it worse.) So today I’m using that sadness and frustration and turning it into the proverbial “squeaky wheel.” Alas, I’m still testing positive for THC although it’s been several weeks I even used marijuana. This wouldn’t be an issue if medical marijuana was legal in Florida.

How can a plant be illegal? And furthermore, how can the drug test for marijuana be legal if it’s not accurate? Because it certainly isn’t. Even if you test positive today, it doesn’t mean you’ve used marijuana recently! Or even within the last several weeks!

It’s just not right, and making a chronic pain user pee in a cup in order to obtain medically-needed prescriptions is just downright wrong. Stop treating us like drug addicts and treat us like patients. That means TREAT us, don’t just dope us up on whatever the latest pharmaceutical company is pushing on you, to push on us.

Currently, my real frustration is with the politicians and wanna-be second-term governors or even president, that spout out untruths about marijuana and what would happen if marijuana was legalized for medical use. A recent Reuters poll shows that 88% of Floridians support legalization of medical marijuana while only 10% oppose it. Like Eric Shapiro asked, “Should the 10% dictate policy?” It seems like only the politicians have these extremely outdated views (for example, Jeb Bush recently used scare tactics in Florida, urging against medical marijuana because it would ruin tourism and businesses in Florida). Hmmmm. How’s that recreational pot working out in Colorado?

Six months after the legalization of marijuana, Colorado’s tax revenue skyrocketed as crime fell. In the first four months, marijuana sales were more than $202 million, about a third of them recreational. Taxes from recreational sales were almost $11 million.

That is $213 million dollars in the first four months! From a plant! That is natural! And costs nothing to grow! Tourism has gone up, crime has gone down, new businesses are open, and the sky has not fallen. Nor will it. And now Colorado has $213 million dollars it didn’t have before. Imagine the good that can do. And how about tourism?

Colorado store owners Chuck Reynolds and Lee Olesen said they had recorded visitors from all 50 states since opening in April. There regular customers? Senior citizens and veterans who didn’t sign up for medical marijuana cards for fear of losing their federal health benefits. … “I think it should be legal everywhere,” said Mike, a former National Transportation Safety Board employee.

There’s real incentives – proven incentives – to legalize and tax marijuana. Since the debate in Florida is for medical marijuana, I’ll continue to spread the truth about the benefits of a natural plant called, “cannabis,” a.k.a. “marijuana.” Let’s check out the following graphic. Therapeutic uses listed are for gliomas, alzheimers, fibromyalgia, dystonia, hepatitis C, diabetes, osteoporosis, MRSA, multiple sclerosis, ALS, chronic pain, tourette’s syndrome, HIV, hypertension, sleep apnea, GI disorders, incontinence, and rheumatoid arthritis. Our ancestors figured this out thousands of years ago. So why again is this plant illegal?

Herbal Benefits of Medical Marijuana

This isn’t a comprehensive list of what all marijuana can treat, but I can personally attest that it DOES help with fibromyalgia, it DOES help with chronic pain, it DOES help with hypertension, and one that isn’t listed, it’s a natural sleep aid. Since I stopped using marijuana, I have suffered more pain, a fibromyalgia flare (that I hadn’t had in three months because of the combination of pain medication and marijuana), and I have terrible insomnia. I can no longer fall asleep soon after I go to bed. Sometimes it’s after 3:00 a.m. before I fall asleep. Do you know what that does to a person with fibromyalgia? It turns me into a walking zombie.

I’m not a drug addict. But I’m treated like one, and that’s just not fair. But that’s another post, and that one will be about hypocrisy at its worst.

Meanwhile, I want to thank everyone who has joined this blog, all of you that have commented, given me hope, and provided me facts about the medications I’m currently taking. And the comment from namenews, “Keep Rocking, Activist!” made my day. It’s people like you who keep me going.

It’s people like us that make change. So help me be the change. Help me be the squeaky wheel!