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.

Yes, Virginia, There IS a Santa Claus!

Somebody pinch me because I couldn’t possibly be awake! Why? Because I saw a doctor, a family physician, who believes in treating the whole patient AND he treats fibromyalgia patients. AND he spent well over an hour with me today for a “meet and greet” that turned into a first appointment. You’d think that would be enough! But no … there’s more!

He explained more about fibromyalgia and how it’s treated in an hour than I’ve heard in the last 20 years combined. Instead of throwing a prescription of Tramadol my way, he really explained (even drew on paper) how each class of medication works to treat the fibromyalgia pain, something I never knew. He wants to wean me off the Tramadol I’ve taken for almost 20 years, and start fresh with a new regime. YAY! It’s about time! Those Tramadol are indeed addictive yet they are not nearly as effective for me anymore. This doctor explained that the Tramadol actually interfere with narcotics. So no wonder I’ve still been in pain! I’m pleased that he sees what I’m on hasn’t worked and is willing to try new things. But only one weaning me off one med at a time. Another yay! And obviously a smart doctor.

So how did I find this wonderful doctor? Actually through one of my best friends, one I reconnected with after a long absence in each other’s lives. She, too, suffers from chronic pain, but hasn’t had any issues like I have getting any pain relief (prescriptions) or having to go through those unconstitutional drug tests to get those prescriptions. For months she’s asked “why don’t you see my doctor?” Finally, it’s like a light bulb went off. Why don’t I see if her doctor is accepting any new patients? And then after I studied him, I was really impressed; one of his many awards is a Compassionate Doctor award. That’s what I’m looking for.

I found a great doctor willing to TREAT ME! Really treat me! And not be afraid of writing a prescription for pain medication. And really treating me, that’s the important thing. You just don’t know how happy I am! There is hope!

Yes, Virginia, there IS a Santa Claus and he’s a doctor. My doctor now. An early Christmas present! He’s even seeing me BEFORE the holidays so he can make sure I’m properly medicated to avoid/handle the impending fibro flare. Is he good or what?!?

P.S. I even was honest about everything that I have done for my pain, including cannabis use. He asked “which strain?”

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!”

Raise Our Voices and Be Heard

It just really sucks hurting so bad. I’m not in a flare (at least I hope not) but I am recovering from one of my worst ones ever. Last night when I went to bed, I could barely keep my eyes open, and I slept soundly. Perhaps the insomnia has left me alone for a while.

I’ve joined several Facebook groups dealing with chronic pain and fibromyalgia. I’m not the only one hurting, I can assure you that. I’m not the only one with a horror story, oh no, mine is just a blip of so many, that I think the Earth’s surface could be covered. I’ve never read so many injustices, so many cruel statements, just so many of us hurting, and getting either no relief, or barely any. And the stories of what we go through, the ignorant looks, the suspicious glances, the embarrassment, it’s just downright sad.

Chronic pain, like mental illness, is an invisible disease, and both are not adequately treated, or even acknowledged. I read about one person’s doctor who said they would never prescribe pain pills because “fibromyalgia is all in your head.” Or another story about how a pharmacist not only refused to fill a prescription, but had called around to other pharmacists, telling them to deny filling this certain person’s script. It turns out the doctor had written something incorrect, but they wouldn’t even call. But they spoke about it – in front of a line of customers – and very loudly apparently. What the heck?

Or what about the person’s son who steals her pain medicine in the middle of the night. THESE are the folks that have put us in these positions, but WE are the folks who need to be treated with dignity, and the same privacy we expect – we deserve – from our health care providers. “Well, this is the only way we can prevent …” bullcrap! The DEA hasn’t done anything but make these pain pills even more attractive by making them so taboo. Even Tramadol, a non-opiod, is now going to become the latest trend on the street, all because it’s a scheduled narcotic (even though it’s not a narcotic, explain that, just like Lyrica) … So the folks on the street are going to keep on with the street deals, while us suffering in pain get treated like drug addicts. Some are even just downright refused to be treated anymore. One person said her doctor basically said, “I’m not going to treat you because of the DEA. Not risking my life.” Closed the door.

BAM!

It’s a travesty that we who already endure pain like you wouldn’t believe – because YOU can’t see it, YOU aren’t feeling it, but WE DO – it’s such a travesty that we are treated like druggies, forced to pee in a cup, all the time, just to get our medicine. But it’s not considered “medicine” at some drug stores – it’s a DRUG – and you’re a DRUGGIE – and you raise red flags – so we’ll just not fill your prescription here. WOW. At least I have never had my pharmacists or technicians do anything other than be professional and courteous, but there are those horror stories. Imagine you having to go pee in a cup every 2-4 weeks just to make sure you’re not doing anything you shouldn’t be doing. Is that right? Is that legal? I think NOT!

WE are being denied the treatment we deserve, and as a whole, we need to RAISE OUR VOICES AND BE HEARD.

If you want to join my fight, email me at chronicpainmanifesto@yahoo.com. Email me your story and I will collect our voices and our stories. Let’s stand up and fight!

If you want things to change, you have to BE the change.