You can find yourself with a new doctor for a variety of reasons. New insurance, moving to a new town, a referral to a pain specialist or Neurologist…these are just a few. In all of these cases, you will need to bring your new doctor up to speed about a chronic neuropathic pain syndrome they may never have heard about.
A Neurologist or pain specialist may have dealt with BMS before and if you have a choice in the matter, try to find one who has. Their experiences may be to your benefit.
However, many of us are caught in that somewhat awkward position of educating our medical professional and it can be daunting if you aren’t prepared.
First, do not let anyone brush you off with an “Oh, it’s just menopause. Or, It’s just a natural part of aging.” Ladies, I am talking to you here in particular, because there is an “older woman” category that we can be placed in and subsequently disregarded a bit if we aren’t careful to speak up. Once that happens, it is difficult to change that mental image of you in your provider’s mind. Speak up and present data if you would like to avoid this, and you should, because it is never productive in searching for diagnosis or treatment.
How do you present data? Good question!
When you meet with your new doctor, you should have three things firmly in hand.
- Your pain diary or record
- Your history with every medicine you have tried with start and if applicable, end dates, and every detail you can remember about the onset of your Burning Mouth.
- The link to the BMS Support website where the latest studies and research can be found easily. All your doctor needs to do is click on “Research” on the home page and it will automatically give them access to everything we have collected on Burning Mouth Syndrome research!
Be clear about your level of pain, and specific in how it is affecting your everyday life. Be frank about your feelings and how they have been impacted. This will help your doctor immensely when it comes to finding medicines for you to try. Remember what we talked about in Chronic Pain Scale and Burning Mouth Syndrome and make sure that your acting ability is not preventing you from sharing your pain with your provider.
Get your treatment plan from your new doctor in writing. Why? Because you may not remember all the things you discuss, and it gives you a hard copy of what you have decided to do and the medicine or additional specialists that have been recommended. This is important data to have and to refer back to throughout your Burning Mouth Journey. No one wants to try the same medicine twice, or repeat a scan or test that has already been done.
Be your very best advocate and keep good records, because this truly is a marathon for most of us.
I’m suffering since 2008 like you. I am 64 years old.
At the beginning, it was not so serious.
Then it got worse. I went to Paris to the hospital “La Pitié” , in order to see a stomatologist. He prescribed me Clonazepam, to put on the tongue and let it dissolve.
I went to a neurologist too .
No one has any answer .
I am french and live in in the north east of Paris.
Now I have a lot of problems to eat , to drink and after speaking.
LikeLiked by 1 person
I am sorry you are going through this, but thanks for commenting. It sounds like you are doing all you can at this point. What kind of problems are you having with eating and drinking? Those are temporary reliefs to me. Speaking a lot can increase the burn, but I keep sipping ice water and soldier on because conversation and public speaking are things I enjoy.
thanks for your answer .In 1996 and 1999 I had a breast cancer wih chemotherapy and radiotherapy. A doctor thinks it’s due to these treatments.I took psychotropic drugs for a long time. is this your case?
when I eat and drink, the gum,palate and cheeks hurt ;after speaking,the labial frenums hurt too.
I weigh 31,7 kg.
As you will see as you read this blog, my BMS pain began with dental procedures although there is no proof that they caused the pain. I have seen cases where chemo and radiation has been paired with burning mouth as a side effect, and this is what yours certainly sounds like. Was the psychotropic drug you were prescribed Lithium, or were there others? I tried Lithium but it was not as effective as Clonazepam for me.
Your symptoms are not that of primary burning mouth syndrome (no underlying conditions) since you are having pain when you eat and drink. Those activities are usually pain relievers for primary BMS sufferers. Some foods can be triggers (salty, sharp, crunchy, etc.) but while we are eating them we do not burn. Drinks are usually soothing, as well. Your weight is incredibly low so it sounds like your pain is preventing your nutrition and that should be a concern for your doctor. You may need nutritional supplements, so think about discussing that with him or her.
I hope you find some relief!
thank you for your explainations. the doctors didn’t find any other deseases.I underwent a biopsy of salivary glands (Sjögren’s syndrome):it was negaiv; I had blood tests (anti-nuclear antibody);it was negativ too.
my lips are burning and I’m suffering under dryness.
I took diffrent antidepressants since a long time before the beginning of my BMS (now:venlafaxine).
today, it’s raining cats and dogs!