I only felt it right to choose now for my update. Its been 1 year since the day my Job said that I could no longer work and should file for my STD (Short Term Disability). It was only a month after that they said lets go ahead and do long term, and you no longer have a position here and oh you should file for SSDI (Social Security Disability Income) because it’s a requirement of filing for LTD (Long term Disability) with your work benefits. I have not held a job in 1 year as of now. It has been a long and extremely challenging year. One that I thought would end differently than it looks to be.
When I stopped working my breathing issues had become enough of a problem that I couldn’t climb stairs without collapsing to the ground. My heart rate regularly staying in tachycardia at an average of 130 BPM resting and tiger on activity. I had abnormal x-rays, CT scans, overnight oxygen monitoring, holter monitoring, pulmonary function test and cardio pulmonary stress tests. Yet my Doctors couldn’t figure out what was going on. Nobody had an answer for me.
As I continued to get sicker all my symptoms seem to be flaring due to the stress. My body was under from these new issues and my heart and lungs constantly working so hard. I was constantly having to increase my medication dosages and still getting no symptom control, to changing to new medications and still seeing no symptom control. This was a constant process all year long for me almost.
Then in April, I landed in the hospital with abnormal EKGs and a heart rate in the 40’s low 40’s too. My body was used to a heart beating on overage 130 times a minute, so my body felt like my heart was basically stopping. 40 bpm was not enough to keep my body functional by any means. My labs came back out of whack, nobody had answer still, they just stopped my cardiac medications and sent me home after a few days and my rhythm went back to a normal rhythm. It took several days for that to happen though. Then I had to have a heart Cath to look at everything and was told they still had no answers. They couldn’t replicate the rhythms I went into to see a problem nor could they make my heart get to fast.
By this time my PFTs (Pulmonary Function Tests) had leveled out and my Diffusion capacity was no longer declining. My Scans were all clear and nobody knew wha else to do for me. So I began doing more and more research. I wanted to know more about all the medications I was on. I was on 15 by this point. Turns out many of my medications could be the culprit, but so could AS. So what do we do. It was also at this point when I knew things had to change. I was now spending the majority of my time in bed. I didn’t go anywhere, I barely ate, I couldn’t sleep. I threw up multiple times a week, I was always bloated, Extremely fatigued, I couldn’t think straight, I didn’t have the energy, strength or motivation to shower or get dressed.
During a week of repeat visits with my GP trying to regulate my medications to find some kind of control over my symptoms I received a phone call unexpectedly. My Doctor was saying stop these medications now. I don’t know how we haven’t looked at this sooner. He says, I think we have you taking some medications that are actually causing your symptoms to get worse. Now, you are my Doctor, how is it that when complain of the symptom of Restless Leg that you would prescribe me an insomnia medication that actually causes RLS to become more severe? Here is the response I got. “Well, when you come in and have such a lengthy list of symptoms even when we know you have a diagnosis such as AS that causes many of them, our time is short, and we can’t always focus on every symptom at every visit. So if you come in today because of insomnia but we don’t discuss your RLS then it’s often easily over looked because we just prescribe the first recommended medication that covered by your insurance. We don’t go researching to see if any potential symptom my interact with your body first. We just don’t have that kind of time in our limited visit.”
Boy did this make so much sense to me. After all, who has been prescribed something only to get to the pharmacy to find out that you can’t take this medication with one you are already on? The Doctors often don’t look at these things, they expect the pharmacist to catch it because that is their job. This has happened to me. So he says he looked over my medications and he decided to have me stop three of them and was placing me on new medications. Almost immediately I noticed a big difference in some of my symptoms. Then it really struck a nerve, They are my Doctors, they are here to help me achieve my best health not make me sicker. Yet here we are, I’m getting sicker and sicker at the hands of my drug peddling Doctors because all they think about is slapping that pharmaceutical band-aid on our health and not actually fixing our health.
I set another appointment this time to go in and discuss stopping all of my medications. I had a fairly long conversation for a Doctor visit and it was a good one. My Doctor listened, he agreed and he supported my choice to stop medications. He agreed that maybe the pharmaceuticals were really more the problem than my actual health was. I made this choice and stopped all medications other than pantoprazole for GERD as of 10-01-2019 I have not had anything from the prescription category other than that one pill. In just this short time I went from not getting out of bed, feeling like I couldn’t do anything because I had no energy, or motivation, my heart and lungs wiped me out, throwing up constantly wiped me out, never sleeping wiped me out. I went from all that to actually feeling like I can have a life again.
I Started using Cannabis when I stopped medications also. 2 months ago I had Stage 1 liver Fibrosis due to medication use, and a few weeks ago I had a completely clean liver scan. My restless leg was a daily thing, and so severe that throughout the day I was having massive tremors and spasms of my legs and it even started in my arms. Within days of stopping medication my RLS has gone to nearly none. I have maybe a few times a week a short period of annoying discomfort that heat usually soothe away. My vomiting has fully stopped and I was throwing up 4-5 days a week multiple times a day. My insomnia has gone from every single night to maybe 1-2 nights a week and even those nights are to completely sleepless like before, they armor just I wake up to early and can’t go back to sleep. My Gerd is better controlled but not gone, and not controlled enough to due without medication. My pain has gone from a steady 5-6 everyday with moments of higher pain to having minimal like 2-3 pain with occasional higher pain days and even some days with lower pain. I am eating better than I was and I’m getting up every day and doing something, even if its small stuff. I feel like getting up and doing stuff, I have motivation again. I have energy most every day.
I have not yet altered my diet or added exercise into my routine, but I know with my new improvements this should be more beneficial than it was in the past. For example, it doesn’t matter how good you eat or exercise if your medications cause weight gain, or inability to lose weight. Which was also a problem, because some of my medications did and I failed all diet and exercise programs I tried. As for my attempt to be medication free, I want to stop the Gerd medication, but unfortunately the damage long term NSAID use has caused over the years has really jacked my stomach up and its going to take a lot of work to come off of. Prior to ever doing so I need to have the acid build up under control in order to protect my esophagus from more damage and potential development of cancer. It is a fair trade, one medication to ensure that I hopefully prevent further damage, one medication that doesn’t impact my quality of life in a negative way. However, hopefully after December I will have updates on the potential of coming of this medication as well.
I am improving, this is a good thing. My Pulmonologist agrees that maybe this is the right track for now also. The current plan is to reevaluate my PFT to see of anything has changed after coming off medications. If it improves then Medication probably caused my lung issues, if it has declined then AS is probably the culprit and I’ll need to reconsider using a biologic to prevent further lung damage. At this point it is still a waiting game and I dont really have answers, but I feel 90% better than I did a month ago, 6 months ago and a year ago. I’m not where I was 2 years ago, but I have hope.
This isn’t a plead to have others stop medications, but more an advisement that you just never know when you actually feel worse because of your medications and not because of your AS. Please be aware, always question your Doctors medication choices. If you think a symptom has gotten worse after a new medication check to see if it might be a cause and don’t let your Doctor try and tell you its not that. Be an advocate for your healthcare and make your Doctor work for your not Big Pharma. I will also have a follow up blog about Functional Medicine Doctors and using Functional Medicine to your advantage in your healthcare team.