My Experience with Chronic Urticaria (Hives)

I have to mention why I have been MIA for the last bit, it being the reason that I decided to write today. In light of these grievous events, I'm aware an explanation is not owed to an imaginary audience anyway. Nevertheless, I will oblige to the future supporters. The latest of shenanigans in my health journey has been an allergic reaction of unknown origin... which is my fancy way of saying, I have been in a hives outbreak for going on 3 weeks. Oh it's been a joy.

I promised to write about my experience with a nerve block I was to receive in my right knee. So here it is. And as usual in chronic illness, there is no simple experience.

It all started with the appointment I had at my new pain specialist I am currently seeing. The doctor there so far has been wonderful and listens really well. He recommended since my knee pain is so bad in both sides that we start with one side and then try the other if the first side responded well. These blocks were to assess if I would be a good candidate for radiofrequency ablation of the nerves, which is pretty much a moderately longer version of the nerve block I would receive.

I received this nerve block from my pain specialist in my right knee about 3 1/2 weeks ago. The truth is, it didn't provide relief for the knee at all. They did what they said was a genicular nerve block, which should numb the knee, doing injections superior, inferior, laterally and medially (above, below, side and inside) of the knee. It instead provided relief for the tibial area, and just mostly the anterior (front) portion of my lower leg below the knee. I am not a doctor, but I would assume that a nerve block for the knee would in fact numb the knee itself. I do feel that the doctor botched this attempt at relief. I realize we are all human, however, I don't feel inclined to pay for said botched attempt.

In our appointment after the events I still have yet to mention- he did not acknowledge that it was his error. Rather he apologized that it "didn't work for me".

The real bulk of this story lies in what happened about 3 days after the injection. I broke out in hives, hives of which- over the next ten days, proceeded to jump to my left leg, forearms, face and now torso and entire legs. I am now on steroids to treat this reaction, as well as a quadruple dose of antihistamines. I also now have an allergist (allergy specialist) on my team of expert questioners, who is still unsure of the real culprit for this outbreak. After going over the laundry list of possible culprits, i.e., new detergents, soaps, lotions, etc., we are at an impasse. We are unsure it could have been from the injection, but it is a possibility.

These events unfortunately occurring as my fall semester at university is gearing up with 9 credits. I don't write seeking pity or rumination, but I would like to bring awareness to the possibility of allergies in pain injections. The allergist found out that not just lidocaine was in the injection, but also something called bupivacaine. This could very well be what I am reacting to. I want to get this out in cyberspace to see if my situation is not totally unique, in the possibility that I am having an allergic response to a nerve block. Working with my allergist I will know eventually what it is my body is up in arms about.

Eye and lip swelling. Day of ER visit

If there is a good outcome to all of this, it has been that I am finally approved for a prescription that will provide actual pain relief. I would like to remind readers out there that I was diagnosed with fibromyalgia 5 whole years ago, this month... over this time, I have seen many different doctors, specialists- including rheumatology, neurology, gastroenterology, and had over fifteen different MRIs and imaging tests. I have only asked directly for pain meds once (and only about 3 months ago) from my rude and condescending rheumatologist, only to get rejected. I was scared to ask any doctor directly for five years, for fear of being viewed as drug-seeker, and lose my doctors. I knew deep down I had nothing to hide... except what I was hiding was my pain. I didn't want to be accused or shamed, so I never asked. Being in so much pain, I still prioritized trying to never exaggerate, in hopes that when I said my pain was higher, I wouldn't be judged to be crying wolf. Unfortunately, I would sometimes underrate my pain, endlessly settle for medications and treatments that promised the world, but in fact did nothing for my pain.

The way docs can perceive us within a chronic illness is everything, and I think they should know how hard it really is for an invisible illness patient to ask for something, let alone admit that natural remedies and nerve medications are not cutting it any longer. (And never really did in the first place). This is a tightrope for us as chronic, invisible illness patients. Especially for fibromyalgia patients, as there is still a lot of stigma surrounding us in the medical community, even with all the proof that shows our pain is nothing short of debilitating.

Part of me can't help but think that it took something visible happening, like hives, to be taken seriously and believed that my pain does exist. Although irrelevant to my fibromyalgia pain- my hives could be clearly seen, in the pictures I took every morning after they would arise overnight. I can say that the amount of eye-contact increased at my doctor's. And maybe my volume increased, because I swear my doctor's hearing improved! Weird, right?

Let me know in the comments what you think and feel about being granted relief, or voice your frustrations in still not being provided it!

 

Waiting in the allergist's office with my new symptom journal. (I bought this journal because I love butterflies. I have this one as a tattoo.) If you didn't know-- butterflies are the sort-of unofficial "awareness mascot" for fibromyalgia and a few other chronic illnesses.

Finally getting approved for relief is anxiety-inducing in that I personally worry about becoming dependent on my doctor, their expertise, licensure and how they are viewed in the medical community. The relief can be taken away in an instant. For fibromyalgia pain varies daily and each day may even be a different kind of pain, mobility and functionality. But the days that are bad, are really bad. And that is truly no exaggeration.

If you or anyone you know of has problems with allergies, or drug sensitivities, it is important they keep a symptom journal. Symptom journals are an invaluable tool for us as chronic illness patients. A lot of my friends on Instagram have attested that a huge factor in doctors honing down to diagnosis, flare-ups and allergies is to align daily symptoms in a journal. The only way for us to know what is causing a reaction is to try and recognize patterns, just like as is in a food diary. If this is possibly an autoimmune response (hives and rashes can happen with diseases like lupus), it is vital to have a track record of all symptoms with their individual durations.

I plan to do an update on how this allergy diagnosis goes, and in the meantime I am diving straight-in on a symptom journal, which I plan to have with me at all times. I want to follow up with real tactics on how to keep a symptom journal as well, even more in-depth. All to come soon.

Leave a Reply

Your email address will not be published. Required fields are marked *