A Health Update: Off Meds

It’s been a long time since I’ve written a true health update here. However, while a great deal has happened, there are still no answers or conclusions to share with everyone. Maybe that’s why I’ve been avoiding writing about this–I still have so many unanswered questions. But for my own benefit of recording my health status accurately, and to catch us all up to at least where we stand today, it’s important that I share what I know thus far.

 

11120538_10102500000810355_6358796230381208007_nAs I shared in a few previous blog posts, I visited UofM Hospital in March for a second opinion in Rheumatology. Long story short on that visit: I was, and still am, very impressed by the team of physicians and my new physician specifically. Not once has anyone been that thorough and inquisitive towards my healthcare, besides myself of course! After a plethora of x-rays and vials of blood, I waited to hear back and went back to some of my local physicians to transfer some scans that were still missing at UofM. My x-rays looked healthy (good, but curious, news), but my blood tests results were a hot mess.

 

The first step was to try a medication that is typically used to treat Gout, but was offered because of my high uric acid levels. The first thing my new physician said was, “This is not a treatment.” The first of many to come I’m sure–but I was to think of this medication as a diagnostic tool. After two weeks on the medication, I reported back that I felt nothing positively or negatively as a result. Okay, cross that off the list. Next steps: I more than likely was testing positive for Lupus; however, the anti-inflammatory medications I’ve been on for years (Enbrel, Humira, and now Remicade) are known to cause Lupus and/or cause a positive test of Lupus. So that’s not concrete enough yet. And UofM was STILL waiting for one more scan from my local doctors.

 

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Moving on, the next thing we tried brings us to present day. I was taken off of all anti-inflammatory medications. So that means no infusions, no shots, no NSAIDs, no pain killers. No Remicade, no Methotrexate (Chemo), no pain relievers. I knew that this option was more than likely coming at some point, and I was terrified. Let me explain: I think this was a very smart move, a move that could truly give my body the chance to show us what was going on and let us find the answers. My body has been chock full of those medications for almost 5 years now. On the flip side, I was scared of the symptoms and scared of the amount of pain that might come. The goal of doing this is to see how my body responds: if I felt the same, then we know these medications aren’t working for me; if I felt worse, then we know my body needs anti-inflammatories but that it’s a question of what kind and what for; and if I felt better, then that’s a whole other ball game.

 

That brings us to today. I have been off of the Methotrexate for 1 month now. And I have been off of the Remicade for 2.5 months now. And how am I feeling? In all honesty: complete shit. But let me explain that. The only memory I have of how I felt on no treatment and medications is from before I was first diagnosed, at my very worst. So you can understand why I was expecting tremendous pain and was terrified that I would not be able to get out of bed. That’s how it was before I started treatments almost 5 years ago. Now, don’t get me wrong, I feel terrible, but here’s the surprising part. I feel terrible and have symptoms that I did not even know existed. The type of pain and the amount of symptoms I have now are so much different than how I felt when I was fighting for a diagnosis.

 

Hardships often prepareordinary people for anextraordinary destiny..pngI still have immense lower back and spine pain, and my hip pains are back; I’m not surprised that that came back. I also have severe Fibromyalgia symptoms, which I am also not surprised about. But here’s what I didn’t expect. The thoracic spine pain: which is basically the middle of your back where your ribs meet your spine, is horrible. It’s a heaviness in my chest that I have never felt before. It’s a belt around my chest that is such an indescribable feeling. And the cracking of the joints and knife-like pains are new. What else is new? Digestive issues. Stomach pains and cramps after eating. Not being hungry. Other digestion issues that come along with that…. And the last symptom is really tough–it’s almost related to my fatigue but it’s a bit different than that. It’s more debilitating. What it feels like is that my entire body, my joints, my limbs, everything is just so heavy and painful. It hurts to move much. It’s hard to walk longer than a block or really just stand on my feet more than 5-10 minutes. And I know that I’m out of shape, I’m certainly making no excuses for that. However, this is just so different from that type of feeling.

 

So I’ve been chugging along, remaining as strong as I possibly can through these symptoms, just keeping my eye on the prize. A few of the last weeks off of medications here have been some of the hardest weeks of my life. I’m almost grateful for the stress and busy manner of other parts of my life because it’s been a welcomed distraction. I don’t know what all of this means, and I am starting to believe that we have not even come close to my true diagnoses over the past 5 years. We might have been masking a lot with strong medications, and that’s not to say that those types of medications aren’t needed. I might have to go back on them, or a different variation of them. But I think I forgot what was a side effect and what was a true symptom.

 

The next step is that the doctors at UofM have finally finished re-reading all of my scans from the past 5 years. And just a couple days ago I sent my rheumatologist there an update of how I’ve been feeling off of meds. We’ll see what the next steps are, but my gut (my suddenly messed up gut) is telling me I may have been misdiagnosed.

 
Unfortunately, that’s about all I can tell you for now, because it’s all I know myself. I look forward to what happens now that we have tried life with no medications. Once I have more information, some diagnoses, maybe even some new treatments, I’ll post another update. Until then, fingers crossed for at least some answers in the near future.

 

 

 

 

xo,
Chronically Kristin

11 thoughts on “A Health Update: Off Meds

  1. Ugh, I’m so sorry to hear you’re feeling so poorly! Chronic illness can be so tough. I know what you mean in that it’s often hard to know what’s a symptom, what’s a side effect, even what’s due to being unfit/mostly stuck in bed! I get that same feeling you mentioned – heaviness in the limbs and can’t stay upright long. I always describe it as feeling like my body is made of concrete and I’m heavy and ‘under pressure’. Hope you get some answers and feel a little relief soon xx

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  2. I’m so sorry you’re going through this, I feel like I’m reading my own current story only with a different set of ailments, ending with the same likely result: Lupus.

    In my case it has been my response to medications that has been sealing the diagnosis, for me lab work has also been useless. It looks like I might have had it since as early as age 15, though it only got nasty 2 years ago after my hormones were tested. At that point I developed Menieres which in November was determined to be autoimmune with suspect systemic autoimmune. In December, no coincidence after my longest stretch off steroids in 2 years, my colon shut down. It was suspected I has more endo at surgery in March my entire colon and most of my pelvis and there was only one potential spot of endo. My surgeon said it had to be autoimmune. It’s been a roller coaster ever since. Including a psychotic break due to 40+ days on Dexamethasone.

    Take pictures of your face and chest and take your temp daily. That was very revealing. The malar rash pictures you see online are very deceptive. I’ve had it for at least 2 years and didn’t realize. I’ve also been running mysterious low grade fevers the past 2 years.

    In my case it looks like my Lupus lives in my brain and also my gut. I’m getting sliced and diced too. I have specialized PET scans at Hopkins in less than 2 weeks. I’m supposed to have every GI test known to man, but since a very tedious time on Dexamethasone and Plaquenil my digestive system is working better than potentially it ever has, at least in as long as I can remember. So I don’t know if they’d find what they want.

    This is such a process. I highly recommend the Twitter LupusChat they’ve been so supportive and helpful even though I’m unofficial. At this point though it’s a technicality.

    I’m more than happy to chat and commiserate. The ups and downs, pokes and prodings, symptoms and side effects of this process are just awful. Emotionally this is a lot to handle, such a big diagnosis with no easy answers.

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    • Thank you SO much for the kind words and advice. It’s very greatly appreciated. Once I hear more I would love to chat further! And I’ll have to check out LupusChat as well. πŸ™‚

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      • #LupusChat is in 30! Also, I’m working on an experimental project with a member’s only WordPress, where no posts show without an account. If there’s interest it’d be a place where a small network can see each other’s writings and maybe close friends. I and several other friends have felt a need to have a place that isn’t public. If the interest sticks and I get it looking nice with some good features then it’d either be something we could export to our own sites, or whatever. E-mail me if you’re interested.

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  3. Thanks for sharing an update. Sounds like it was worthwhile coming off the meds to get a full picture of symptoms. That uneasy feeling you have when you know you have been misdiagnosed is horrible. My fibro was initially blamed on my migraines and ibs that I had since a teenager. No one listened when I told them this was different until i got more and more ill. Great that you have seen good thorough specialists x

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    • Aw, thank you so much for the kind words. It always helps to hear others have gone through similar situations. All the best to you as well! xo

      Liked by 1 person

    • Thank you! I appreciate the kind words. I’m hoping so too! Keeping my eyes on the potential light at the end of the tunnel, haha πŸ™‚

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