Its been a very trying week but I should say that I have been mostly TN pain free for the past 10 months. So every cloud has a silver lining!! However after putting down 2 hard years of wondering was I just plain mad or was there something more I have finally got answers, mostly. I have been diagnosed with Sjorgens, Utercaria, some rare form of migraine that leads to paralysis short term (cant think of its name, sorry). Now that was a lot for me to take in but it didn’t stop there. The rheumatologist said he also suspects fibromyalgia and arthritis. He has me set up now to meet a load of different people and have some further investigation done. Is it even possible to have all these things at once!! At 26!!! I have to say the man in question was lovely and spent hours racking through my history and family history but if he used the word genetic “mutation” one more time I was proably going to cry. I suppose I shouldn’t really be surprised , he kept saying it was rare but so is tn. The sjorgens I knew was coming, my mother and aunt both have it and I’m all dried up with a while. The arthritis I expected but maybe 40 years down the line and as for the fibromyalgia, even though it is also in the family I never even suspected it. The urticaria is also from bad breeding. At this point I am very run down and exhausted and am starting to feel a twinge and jolt here and there. So “the fear” has been awoken . I suppose winter coming makes it a bit worse.
Anyone got any info to help an over informed woman out? That isn’t medical jargon that il have to spend the day googling. Give it to me in good old plain commoner please.
Am due to start plauqnil on Monday after finishing a two week course of antibiotics and 3 week course of steriods. Anyone taking this and any advise?
Without medical jargon, I can offer the following, briefly, if you want more ask.
Glad you have been virtually pain free. Potentially your additional diagnoses could be a cause of your TN. Many autoimmune disorders can. What type of arthritis can be important. Either way with autoimmune disorders the only way to get to the bottom of it is lifestyle changes in my opinion, and that of others, drugs will hlp but only suppress symptoms whilst possibly throwing a few others into the mix.
You may have a genetic predisposition to certain conditions, as many folk have, but short of being born with it, it needs a trigger and that is enviromental- toxins, posture, food, stress, trauma etc…
I’ve had Raynaud’s since I was a teen. For about 5 years now, I would occasionally get exercise-induced urticaria. About 2 years ago, I started to just randomly get urticaria not associated exercise. My TN developed a little over a year ago now. So when the TN developed, I had an extensive workup that showed Sjogren’s A and B antibodies. I read a study that said 17% of people with Primary Sjogren’s will develop TN. I don’t really have dry eyes and once in a while I get a salivary issue, so it’s not like the classic Sjogren’s symptoms are at full force.
I’m taking Grailse (gabapentin) for the TN and plaquenil for the SS. Grailse probably saved my life regarding the TN. The plaquenil- I have no idea if it does anything, but I’m hopeful that it’s made my antibodies chill out and not wreak any more havoc on any nerves. I’m not really doing a special diet…I generally eat healthy. I eat dairy, gluten, chocolate and drink alcohol occasionally. I sometimes take claritin + pepcid for the hives.
The first 6 months were really scary and depressing and incredibly lonely. I have a wonderful spouse and 2 little boys but it’s just hard. Your body is whacked out. Your brain is adjusting to the new meds. You are on overload for information and taking it all in emotionally. And your face hurts…and no one can SEE it. And you don’t know what to do with your hair, lol :)! (I grew mine out long and have basically worn it in a bun for a year.)
But you gotta just live, do things, reclaim your body and not let the disease(s) rule you. Don’t be a hypochondriac; try and forget about what you have as much as possible. Go to your doctor appointments. Take your medications. Try to sleep 8-9 hours every night. Go to work. And do the things you love. I’m back to running, back on my mountain bike, and it feels good.
Reading the message board really helped me. Hang in there.
Hi Suzi,
Just to strengthen the autoimmune side of the equation, I have MS and fibro. The TN came up as a result of those. There’s no more autoimmune than that .
Feel as good as you can and enjoy life DESPITE it all .
Hi there,
Thank you for the reply. I was dx TN first but had be having signs of sjogrens about the same time and if not a bit before the trigeminal neuralgia. The migraines came before the dx of sjogrens and the fibromyalgia is still a possibility at this time. I am pretty much bed bound with 2 days now with very bad muscular pain and tremors all over my body. I don’t know what’s causing it but I’m sure eventually I will find out.
Fibromyalgia , sjogrens and ms are very much part of the lives of the females in my family. I’m the first one to have TN and hope for their sakes that I’m the only one to have TN on the mothers side.
A lot of what I have going on is nerve related and has been since getting the shingles at 22, last 4 years my health had taken a steady nose dive. I’m doing OK, have gotten over the first initial panic and distress that set in. I’m relieved to be getting answers and will take one day at a time from here. The more answers , the better the treatment plan.
Once again, thank you so much and hope you are feeling well
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