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Spondylitis mostly affects the spine, but other parts of the body can also be affected. About 15 percent of people with ankylosing spondylitis (the most common type of spondylitis) will experience jaw complications. Inflammation in the jaw can lead to trouble with speaking and eating.
Difficulty speaking for people with spondylitis can also be caused by brain fog — a mental sluggishness or cognitive impairment that has been connected to certain inflammatory conditions, including spondylitis. Brain fog is not specifically a medical condition, but rather a symptom. Inflammation is thought to affect the brain and prevent it from reaching a full state of alertness. The inflammation can also lead to pain spikes that prevent signals from reaching the brain.
Many MySpondylitisTeam members have expressed frustration with cognitive impairment. “I go to do something on my phone, one second later I don’t recall what I wanted to do — brain’s completely blank. I'll go to say a word and loads of random words come out instead.” Another member said, “I have to write down stuff and put it in my phone as reminders; that way I can get stuff done. It's not a very good feeling.”
Several members have said difficulty speaking is the one symptom they want to ease more than any other. “This has me feeling so stupid at times, and ashamed,” said a member who also had lupus, another inflammatory disease. Another said, “It’s so bad most days. I feel guilty about it.”
Brain fog specifically related to speech is a commonly discussed topic. “I can look at someone and call them the wrong name even though I have known them for years,” said one member. Other neurological symptoms affected one member at the same time as the speech problems. “I can’t get the right words out or even think of words. Also, I have dizziness and vertigo.” Feelings of cognitive impairment made one member think more negatively about their intellect. “Same problem; I sound like a bumbling fool. Can't think of words or articulate things most days.”
One MySpondylitisTeam member actually found their speech increased during brain fog, but not their comprehensibility. “I tend to use 100 words when 10 would suffice. This issue has gotten so much worse in the last 12 months.” Another reported broken speech patterns. “I find it hard to get my words out at times, and sometimes when easily speaking, my words don't make sense, but do in my mind.”
Problems with speech cause a wide variety of effects on MySpondylitisTeam members’ quality of life. Not being able to find the words they want to use is commonly reported. “I have noticed that I can't find the words I want to use. I've never had that happen before because I've always been very articulate and my vocabulary is somewhat extensive,” said one member. Another agreed. “My speech pattern is broken, even though it’s in my head properly!”
One member said that, while not finding the words was a problem, people speaking over them was even worse. “Some people interrupt me and/or finish my sentences and it makes it worse. I get frustrated and don't talk.”
Some members fear speech problems are really a symptom of other issues. “I went to a psychologist and was tested for dementia and Alzheimer's,” one revealed. Another said, “I had an MRI and it looked good.” One member didn’t worry about this at all, but their family did. “My family says I am going senile, but I know I am not.”
Members also had fears about problems with speech affecting professional relationships. A member who works in medical billing worried about their ability to keep their job. “I'm not sure how much longer my boss is going to look the other way.” Another member who is a paramedic found co-workers helped. “I am a paramedic and also have times where I ‘lose’ my words. It makes talking to patients fun. Luckily, my partner will take over or say the words I am looking for.”
Since brain fog isn’t specifically a condition, it doesn’t have a targeted treatment. If it starts to be a problem, however, you should see your doctor to rule out other, more potentially serious causes.
MySpondylitisTeam members share many different ways of treating speech problems, including medication, nutritional supplements, and lifestyle changes. Removing sources of stress helped one member. “Stress creates inflammation which in turn signals your already compromised immune system to attack.” Another member found relief in overnight oxygen therapy using a continuous positive airway pressure (CPAP) device. “Sleeping with a CPAP gives the air needed to sleep better and wake feeling refreshed. Deep breathing exercises help lung muscles.”
Some members found medications increased brain fog. “Gabapentin puts a toll on my brain and scrambles my words,” one said. Another said, “I found Gabapentin really messed with my speech and thought process.”
A third member felt that the positive effect of the Gabapentin outweighed its effect on speech. “Yes, I can live with the cloudy, loopy, dopiness of the Gabapentin.” Other members couldn’t deal with it. “I had the same problem with memory and forgetting words when I was taking Gabapentin; it's taken a while to get the drug completely out of my system, but now I don't have those problems anymore.”
The drug Hydrocodone was also mentioned as causing difficulty speaking. “I was on Hydrocodone for two years for pain. I was a mess!” one member said. Another said pain medication in general made the problem worse. “I blame all the many pain meds since 1986.” Still, one member found medication did help. “I noticed when I was on the morphine, I could think much clearer.”
Several MySpondylitisTeam members found fish oil supplements helpful. “High-dose fish oil and other supplements may help,” one said. A different member said, “Try using an omega-3 daily supplement.” Another recommended B vitamins. “The brain NEEDS these essential vitamins.”
One member found writing down what they intended to say helped with later conversation. “I will write it out to make sure it’s right.” A second member found delaying tactics could help at times. “If I can't think of a word, I generally pause and intentionally look, I hope, ponderous.”
Digital technology created easy ways for some members to communicate. “I can communicate all I want by text,” one member said. Another said, “I have to recheck everything I write to make sure I meant what I meant to say. Spell check is my best friend.”
Other members found it helpful to do things that keep the brain active. “I try and do word games and puzzles to stay mentally fit,” one said. “I play memory games and write a lot of notes,” said another. “I, like many of you, play word games for memory, and also Yahtzee to help me with mathematics,” said a third.
When you join MySpondylitisTeam, you gain a community of more than 46,000 people who are living with spondylitis or caring for someone with spondylitis. Members discuss many issues related to improving quality of life for people with spondylitis. Here are some conversations about brain fog and difficulty speaking:
Do you experience brain fog or joint pain that affects speech? What seems to help? Comment below or start a conversation on MySpondylitisTeam.
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