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!
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?
My last post let you know that my Neurologist had prescribed Effexor XR to help with my burning neuralgia.
At 37.5 mg, per day there was no discernible effect. We went up to 75 mg.
After a while at this level, I noticed that the burning had become more of an intense tingling for part of the day. I reported this to my Neurologist and he suggested we double the dosage.
At 150 mg I began to notice that even the tingling was lessening for most of the day. Some days it was hardly discernible until late afternoon when it would sometimes get too intense and I would need one dose of Clonazepam ODT .5 mg to control it. (I am approved for up to 2 mg of Clonazepam a day, so this is a small dose.)
I reported these changes as I approached a month of the 150 mg dose, and asked what he would recommend. He responded that we should give this dose another month and see if accumulated time makes any additional difference. I agreed, and so this is what we are doing!
After over fourteen years of Burning Mouth pain, tingling is a blessing. Is the pain all gone?
I reported in a previous post that my Neurologist had suggested that I try Effexor XR (Venlafaxine) in addition to my daily dose of Clonazepam/Klonipin ODT.
He started me with the lowest dose, and it didn’t seem to do anything so as we had agreed, he doubled the dose and I started taking it once a day.
I immediately came down with a head cold that turned into bronchitis and set everything on hold for a while. Now I have had a clear month at the higher dose and I have noticed something interesting. My daily dose of Clonazepam ODT has always been subject to some fluctuations due to flares in pain after dental work, abnormally dry air, or those elusive good days when the pain level isn’t too high, so it took about a week to notice the pattern.
I was not burning so much as tingling at the beginning of my pain cycle. I had been able to get by with one dose of Clonazepam ODT a day for a week.
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.
Yes, Mother’s Day is this weekend and each successive holiday is a combo pack for me.
On one side, there is the great joy we take in our wonderful daughters and the special families they are both creating. Feeling appreciated for the love, time, energy, and creativity I invest in them, and an added bonus this year of a precious grandson who is still trying to pronounce “Gigi” and who gives me gorgeous, gap-toothed smiles and amazingly strong hugs.
On the other side, there is the 14th anniversary of this go-around with Burning Mouth Syndrome. The 15th year begins the day after Mother’s Day with no end in sight.
There is nothing else like this in my life and it has had effects that I am probably not even aware of yet. Experts say that the body remembers trauma, whether mental or physical, and it may be surprising to see what outcomes await those of us who deal with chronic pain for years or even decades.
Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?
But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.
The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.
When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.