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How Straightforward to be to Doctors

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5 years 5 months ago #12111 by FibroLogic
FibroLogic replied the topic: Re: How Straightforward to be to Doctors
Hi Theresa,

I'm new here, but just saw this bit about betting mouth ulcers/sores. This is definitely something you should point out to your GP as a side effect if you haven't already done so as it can be one of the early symptoms of Steven-Johnsons Syndrome. Steven-Johnsons Syndrome is a very rare but serious condition. It seems to be linked to a wide range of medications as a rare adverse effect. Doing a quick look in PubMed I found a few studies indicating that there have been cases associated with Thorazine, so it would definitely be worth seeing your GP about the mouth sores and checking they aren't indicative of something more serious. I only became aware of SJS since I started taking Modafinil a few months ago and it's one of the medications that seems to be associated with SJS and my specialist told me to contact him immediately if I get either mouth ulcers (or any mucousal membrane ulcers) or a rash.

If it turns out they're just mouth ulcers and not a sign of something else, I can suggest asking your GP for a script for Kenalog in Orabase. It's a topical treatment (paste) that might give some relief until you can sort out changing medication. I started getting mouth ulcers when I first got my sleep splint and Kenalog really cleared them up almost overnight.

Best of luck and hope you're able to have a constructive and positive conversation with your GP about changing your medication.

Cheers,
FibroLogic
The following user(s) said Thank You: TheresaD71

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5 years 5 months ago #12117 by BIY
BIY replied the topic: Re: How Straightforward to be to Doctors
Welcome to the forum FibroLogic,

I hope you find lots of support here from people who understand what it's like to have chronic pain.

I noticed you said you wear a night splint...do you have TMJ (jaw) dysfunction? Was the splint through an oral specialist or your dentist?

Looking forward to getting to know you better,

Best wishes,
Fee

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5 years 5 months ago #12124 by titan55
titan55 replied the topic: Re: How Straightforward to be to Doctors
welcome fibrologic.i hope you get lots of support and advice and friendship here on this wonderful forum.

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain
fibromyalgia
depression

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5 years 5 months ago #12129 by TheresaD71
TheresaD71 replied the topic: Re: How Straightforward to be to Doctors
Welcome and thank you! Yea, my mouth hurts like a mofo lol. I will have to wait until Thursday I guess as that is the only time he is available. My neuro, who prescribed them didnt even want a follow up. Needless to say, we are searching for a new neuro.

T

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5 years 5 months ago #12135 by FibroLogic
FibroLogic replied the topic: Re: How Straightforward to be to Doctors
Hi All,

Thanks for the welcome. Brief intro of me: I have Fibromyalgia (or wide spread chronic pain with no other obvious cause) symptom onset ~mid-2007 after a bout of influenza combined with high work stress. Diagnosis after 2ish years. Usual trial and error re: diagnosis and treatments. Moved to Melbourne 2 1/2 years ago. After the fun of finding a new team of medicos and settling in to a new place, I've been lucky to find some good health professionals and I've progressed pretty well. I'd say my pain management is fairly good these days. I'm still not back to working, but I'm pretty functional and quality of life is definitely a vast improvement on where it was.

Fee - I don't have TMJ pain. I had a sleep study done a year or so ago and it showed Upper Airway Resistance (mild sleep apnoea), so my sleep specialist referred me to a dentist who specialises in these disorders and I had an oral mandibular advancement splint made. Can't really say it has made much different to my sleep quality as I also get periodic limb movement and we haven't found a fix for that yet. Though we did figure out that my constant nodding off in the afternoon was Excessive Daytime Sleepiness and I'm now on Modafinal which is working a treat.

Cheers,
FibroLogic

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5 years 5 months ago #12140 by BIY
BIY replied the topic: Re: How Straightforward to be to Doctors
Glad to hear you're liking living in Melbourne FL. I have lived here most of my life. That's really good news that you have found a good medical team and are managing your pain. It certainly makes a difference to quality of life.

:) Fee

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