I have discussed the power of communication before when it comes to managing chronic pain. Realistic representation of your pain levels, educating new specialists about Burning Mouth Syndrome, and even sharing with family and friends about your condition; what helps…and what doesn’t.
We have discussed counseling and therapy and I highly recommend it if you can find and afford it. It will give you a listening ear from a professional who has “no skin in the game.” You cannot overwhelm them with your frustration and pain, or frighten them about your reactions to it. You cannot express any emotions that they have not seen before. They are required to have professional boundaries, and short of your expression of the intent to self-harm or harm others, they will actively listen and then give you some ideas of how to handle these emotions. It’s a gift you give yourself.
But, you say, “I can’t afford that.” Or, “I don’t want to open up to a stranger.”
We have covered a bit of this ground before, and again I urge you to communicate, take the rest (and medicines) you need, and use your coping strategies to get through the stress of the holidays.
Stress can be part of the “Holiday Package.“
Things have loosened up and you may be putting family events together, gathering to open gifts, and doing things you haven’t been able to do for a couple of years. It can be hard to get back into the swing of things.
Presents? Oh, don’t get me started! The logistics of getting everything to everyone with the uncertainty as to whether things will get there in time…
Over the last few posts, I have kept you up to date on my new medication, Effexor XR/Venlafaxine HCI.
My Neurologist initially prescribed a very low dose with no effect. We doubled it and saw the burning neuralgia back off into a tingle for most of the day. We doubled it again and got amazing relief that lasted all through the day, keeping the pain to a very tolerable tingle. Then the side effect of muscular tics began and we had to cut that little honeymoon short.
I am back on that medium dose of 75mg per day and I usually have just a light tingle that escalates. Sometimes I can skip that late afternoon dose of Clonazepam ODT, but other days I need it to blunt the tingle that is becoming too strong. I haven’t had a real flare yet with Effexor XR so I am unsure whether that means it is preventing them, or the stars just haven’t aligned yet. I will let you know because the ultimate test looms ahead!
I shared the good news with you in one of my last posts that the Effexor XR at 150 mg per day had lessened my burning into a tingle that did escalate through the day but was easily tamed with .50 mg of Clonazepam ODT around dinner time.
I was so happy and just waiting to see if this would hold or if something would change.
As with nearly everything I have tried against this burning neuralgia, something did change.
My husband started noticing a couple of weeks ago that I had begun shaking my head in little “no” movements when I was engrossed in a TV or computer show and it increased as time went on. He mentioned it to me and I truly had no idea I was doing that. It only happened when I was watching TV, whether on the big screen or my computer or reading at night and I felt nothing unusual. He videoed me when I wasn’t paying attention and I agreed, it was a definite involuntary movement.
My posts here are mainly about Burning Mouth Syndrome, (or Disorder if you prefer). Either one fits. I share medications that have worked and not worked for me, strategies to track your pain and see what is having an effect, and coping strategies to help you get through day after day of chronic pain.
Today, I am addressing another kind of pain we can get every time we go for a vaccination. Flu, Covid, Covid Booster, updated Covid Booster, Shingrex, or any other that is recommended…yes, the dreaded arm pain from injections! Some of you find it quite debilitating, some can barely move their arm the next day, and some have varying levels of discomfort depending on what they got this time.
You may decide to get a Covid shot or not, your choice. But darn it, we also lose people every year to flu and it is nearly always preventable in otherwise fairly healthy folks. The flu vaccine has been used for years with few issues, and although there are years when it is more effective than others, it is still worth getting to me. Take a look at the influenza newscoming out of Australia and it will give you a preview of what we may be dealing with this winter.
So how do you avoid the arm soreness that can come with vaccinations?
If you have been following the news, you know that most current cases of Covid, including reinfections, are the Omicron BA-5 variant, which has two faces for us. The good face is that it is not as virulent and fatal for most people. Note I do not say all. The bad face is that it is even more infectious than measles and doctors note correlations between accumulated injury to the body and long Covid symptoms with reinfections. For those of us with the chronic pain of Burning Mouth, the prospect of adding another layer of symptoms or exacerbating the ones we have with hacking coughs and congestion is daunting.
Interested in learning more? NPR explains it herevery well.
Our immediate family has remained relatively unscathed from Covid. Our younger daughter and her husband who live in another state got it, but our daughter is a front-line healthcare professional and they are both somewhat frequent travelers, so that was probably unavoidable. They are young, healthy, and did okay since they were fully vaccinated and boosted, but it wasn’t a pleasant experience.
I had my yearly sit down with my Neurologist yesterday and after discussing my migraine treatment with Aimovig (100% effective, BTW, but getting very pricey with my husband’s new insurance.), we moved on to Burning Mouth Syndrome.
He asked how my pain was, and I said, “The same as usual. I achieve tolerable levels with 1 mg of Clonazepam/Klonopin ODT spread between two doses, and if I have a flare, I take an extra .50 mg to deal with that and try to get a nap.” He shook his head and said, “I have reviewed your file and you have tried just about everything out there, but there is one that I noted you haven’t tried and I think it might help. It went generic in 2006 so it isn’t outrageously expensive and you can safely try a low dose with your present meds and see if it has a good effect. I would like to get you out of pain if it is at all possible.”
Well, to be frank, this is what you want to hear from your specialist. I said I had some questions about other treatments before I jumped into another drug tryout and he sat back and listened intently.
Many people responded recently to my post from 2018 on Cannabis for Burning Mouth Syndrome. They all had the same question I had back then, and that I still have today! Could it possibly help with the chronic pain of BMS the way it seems to help other chronic pain?
I wondered if there was anything new on the subject in four years and the answer was, as usual, not a lot. One small study was done on seventeen patients, and you can read it here. It is also posted on the Burning Mouth Support Websiteunder “Research and Studies.”
As you can see when you read the abstract, they are guardedly positive about the effects of cannabis on BMS pain but acknowledge that the study is too small and that placebo controls were lacking.
“In this pilot evaluation, the C. Sativa oil provided was effective and well tolerated in patients with primary BMS. Further bigger and properly defined randomized controlled trials, with different therapeutic approaches or placebo control, are needed, however.”
Since then, a couple of dramatic things happened. A third occurred more slowly and was less dramatic, but more long-lasting.
First: I received this notice and an accompanying notification from my sleep apnea specialist that encouraged me to enroll myself in the recall website and to add an additional filter mechanism (that I could buy on Amazon) to protect me from the particles the machine could be spewing into my lungs.