I have an appointment with my Doctor on Monday morning. We are both working with a pharmacist in her office to come up with an effective drug treatment plan to manage my chronic pain, because even after two years at a Chronic Pain Clinic, a handful of specialists,and the long long long list of medications I have tried, we are still not able to ‘manage’ my pain…. frustrating? Unbelievably!….. Scary?…. Yes….. It is also discouraging and deflating sometimes, but so far, I haven’t given up. I keep telling myself that there has to be SOMETHING that works… I just haven’t found it yet.
The problem with many of us that deal with chronic pain, is we have MANY symptoms, and there isn’t a drug on the market to take care of all of them… so then we are left either treating the worst symptoms, and putting up with the other ones, or we have to combine medication.
Currently I am on 5 full-time medications, and one that I use as needed (Please don’t judge… I can tell you that I loathe every single one of them). My life revolves around what time I need to take this, and what I need to eat with that to prevent nausea, and battling side-effects all day long. It isn’t fun in the least, but it is the only way that I have been able to gain back some quality of life. Before being medicated I was bed-ridden, and my social life consisted of chatting with people in scrubs in the ER. I spent over a year in bed… and it was devastating. So, no matter how frustrating treatment is for me, I remind myself that it could be a LOT worse…. It HAS been a LOT worse…. and I am blessed to have the ability to get out of bed in the morning, unfortunately medication is what allows me to to that.
I started a new medication about a month ago, and the side effects are pretty nasty. It is a tricyclic antidepressant that is used not as an antidepressant, but as a sleep aid in people who suffer from chronic pain. I have tried a ‘sister’ drug to this one before, and it has no effect, but I told my medical team I would give this one a try. I am starting out on tiny dose, and I will work my way up from there if we think it is making a difference. Among the side-effects, people generally experience Dizziness; drowsiness; dry mouth; excitement; headache; impotence; nausea; nightmares; pupil dilation; sensitivity to sunlight; sweating; tiredness; upset stomach; vomiting; weakness; weight loss or gain. Sounds like a great deal of fun, doesn’t it?? There is NOBODY out there that would sign themselves up for that if they didn’t have to!
What becomes insanely frustrating is when a medication doesn’t give you relief, or doesn’t work the way it is supposed to, and then you are left dealing with all the side effects on TOP of all your pain. When you resign yourself to try something, and you know what it is going to cause you discomfort, but you are willing to fight through that part in order to get ‘better’, is is maddening when it doesn’t work, and then you are left feeling worse than when you started.
It is a leap of faith to put your life in someone’s hands… and each time you have to head back to the starting line, it becomes harder and harder to take the leap of faith. Am I alone in this?
There are two newer drugs that have been FDA approved for the treatment of Fibromyalgia and CFS, Lyrica and Cymbalta. My medical team would like to to incorporate one of these drugs into my treatment plan to see if it might help me. So that would be SIX drugs then, that I would be on. And I am terrified. I have heard that these drugs have a TONNE of side-effects, and not everyone who takes them has had relief from them.
Nobody understands better than I do, that the treatment plan I am currently on is not working. I am the one who has to live through it everyday! But I these two drugs really scare me, and I am just not sure I am ready to play with yet another drug, live through all of the side-effects that come with them, just for them not to work, or not work as effectively as I would hope, and then I have to go through the disappointment and emotional downfall AGAIN!
So I am reaching out to you for some support today….
If you have been on one of these drugs, or know of a personal experience you can share with me, could you either please leave a comment or email me at gracefulagony@gmail.com please?
And this question in the comments section…..
WHAT HAS BEEN THE MOST FRUSTRATING MEDICAL EXPERIENCE YOU HAVE EVER HAD?
Whether you have chronic pain or not, I think we have all experienced frustration in our medical system, with uneducated opinions from health practitioners, or not being taken seriously…. So please share them!
I know exactly where you’re coming from – I’ve been there, done that, and am finally, after years of trial and error, on a “cocktail” that works with as little side effects as possible.
The biggest problem with trying any new drug is that we have no way of knowing what it’s going to do to us. Something may work amazingly well for one person, while being the worst thing that can happen to another. Besides fibromyalgia, I also have chronic depression, mitral valve prolapse, extreme allergies, asthma, and anxiety disorder. You can imagine how many different drugs we tried before finding the right combination. I’ve been on celexa since the birth of my second son, which, incidentally, was when all my medical problems began to present themselves. I’d had mitral valve prolapse since birth, though it wasn’t diagnosed until I was 18, but, fortunately, if has never been a big enough issue for medication. Thinking I was only dealing with post-partum depression, my gynecologist was the one who prescribed the celexa for what was supposed to be no more than a couple of months, but it was soon clear that the depression was deeper than post-partum. Gradually my dosage was increased and I’m now taking 60 mg. daily. However, a few years ago, when Cymbalta was first approved for fibro, my doctor thought it would be a good idea for me to try it, in the hopes it would help my pain and depression enough for me to cut back on the pain medicine. I started out on a low dose, and increased it within two weeks. It was the worst I have ever felt. I was stuck in bed and could not stop crying. It didn’t take long for me to decide “this isn’t working”, so I stopped taking it and went back to the celexa. After a few days back on it I began to feel back to “normal”.
About six months after that I started on the Lyrica, also in the hopes of decreasing the narcotics for my pain. It did work, but still not enough to cut out the pain medicine. Now, in order to get out of bed and live a halfway decent life, I take six different medications daily, including the Celexa and Lyrica, as well as anxiety medicine and narcotic pain medicine. I also have to take steroids about every three months for extreme flares. Yes, there are plenty of side effects, but those are nothing compared to the life I’d have to lead without the medicine.
One of the hardest things about having any chronic pain illness is accepting that you’re not abnormal, or crazy because you have to take medicine to lead a better life. It took a long time for me to get over the guilt associated with taking so much medicine, but as soon as we can accept it, we increase our chances of feeling better.
You may have to try different treatments for a while, and it will most likely take a long time to find out what works, but don’t give up. You CAN get there. I’ll be praying that you get there as soon as possible.
Hi Deanna!
I sure can relate to you! I have a congenital heart defect that causes heart disease among a LONG list of health issues I have had my whole life. I was misdiagnosed for year in regards to my endometriosis, and my Severe ME… and that lead me down a path of 2 surgeries, and FORTY THREE medications in a period of 2 years! Wow hey?! At one point they even had me on an, ummm…. prostate medication…. and by the way I have never had a prostate, nor do I ever want one
I have been a guinea pig for a LONG time, and it gets frustrating to me to have to play with all these meds all the time, but still not get to a place where it is even bringing my pain level down a yad, let along substantially enough that I am managing okay.
I am on 6 medications right now…. and there are not going to add lyrica or cymbalta just yet… I saw my team this morning, and we are going to try to play with the meds I have right now… increasing a dose here, decreasing a dose there…. trying to see if we can find the right combination of those drugs first… and if we can’t then we will be adding one more. (you can read more in the post I made tonight if you like)
Thank you so much for your prayers… I really appreciate it! You have mine as well.
If you want to chat more about meds privately, my email is gracefulagony@gmail.com.
Gentle hugs! Thank you so much for sharing your experiences with me. I really value those opinions from someone who is living it! Your comments make my day!
First of all, I am sorry you are so frustrated! “Will cause frustration” should be added to the list of side effects on at least 90% of the medications used to treat FM, ha, ha.
I have reservations about deterring anyone from trying a treatment that may help, but you really need to hear both sides of a story to form and educated opinion about it, I believe.
I am strongly opposed to using psychiatric drugs to treat FM. I firmly believe the claims of effectiveness were dreamed up by marketing teams aimed at getting the most profit for the manufacturers. What’s more, I think it gives doctors an easy out for treating FM patients who otherwise would be getting NO treatment. In other words, they don’t know what else to try so they cave in to the claims of the drug reps pushing the crap as a treatment for FM.
These drugs were designed with the idea of treating depression. Somewhere along the way, it was concluded that depression can cause unexplained pain and since FM also involves unexplained pain, why not try it? Or at least SAY it will help. In the last few years, every commercial about the latest antidepressant throws in how “depression is painful.” I’m starting to sound like a conspiracy theorist here, but maybe that’s exactly what it is… drug companies make a medicine that needs to sell and FM patients still aren’t fully understood by the medical community so why not target them? Wouldn’t be the first time someone tried to sell an FM patient snake oil!
I put my faith in those drugs when I was mis-diagnosed with FM and that resulted in severe episodes of depression and not feeling myself for well over a year. And yes, I’m pissed about it. Oh.. and NO, none of them actually HELPED. Cymbalta made me suicidal so I was put on Ativan to counter-act that, only Ativan made me want to kill other people, ha, ha. Then we tried Lexapro and that caused nose bleeds, bruising, and a bleed in one of my ovaries because the doctor forgot to mention it cannot be taken with Advil which I need for inflammation. Then on to Wellbutrin, I think. Finally, I decided enough was enough and that’s when my neurologist stepped in and insisted I did not have FM and warned me to stay away from antidepressants.
I should stress again that I do not have FM, but some of my symptoms are very similar. Still, some folks with FM report getting some relief with antidepressants, but the majority of folks I’ve met with FM have not and could not deal with the emotional side effects.
Did you read my post about tonic water? I’m dying for someone to give it a try and let me know how well it works for them. Dad drinks 4 ounces in the morning and 4 again in the evening, mixed with Sprite (or gin) and swears that in a couple of days he’s feeling relief from pain. I would try it, but the med I’m on is basically a pill version of it and I sure don’t want to over-do it. Might just turn out to be another snake oil, but at least I’m not charging you for an office visit, ha, ha.
Hang in there!!
Tammyrenee
Sorry it took me a little while to respond to your comment! I wasn’t ignoring you
just pain+migraine+energetic 8 year old+ Dr’s appt= a frazzled fibro fog the past few days!!
Thanks so much for sharing your experiences with me. It means a LOT more coming from someone who has been there than it does just reading literature put out my pharmaceutical companies alone. I have heard good and BAD about lyrica and cymbalta…. some people respond REALLY well to them, and others have horror stories…. so I guess it is just BEWARE and keep informed… there is no wa of knowing how any person will respond to certain meds I guess. I DO KNOW however, that I have never spoken in depth with anyone who has been on these drugs, but I have read some stories on-line, and the side effects that you got don’t sound like there are horribly uncommon! It is interesting that you have said a few things I have read already about how these drugs have effected them.
I wonder if you have certain sensitivies though? Ativan is a benzodiazepine, and those are almost ALWAYS sedating…. it is what is given for panic attacks and anxiety… Did it really make you angry at other people? I wonder what caused that effect? you poor girl! It sounds like you have gone through a lot with meds like I have, and I think a lot of us go through…. it sure does cause frustration….. and takes a LOT of patience too.
I try hard to stay positive, but I sometimes have my bad days too!
I’m still hanging in! I hope you are too!
hugs!