Trigeminal Neuralgia: More to it than pain

 As some of you may know, I have Trigeminal Neuralgia.  I was diagnosed in 2011 and had an MVD in 2013.  I had to leave the working world permanently Sept of 2013 because I now have Type II pains (intermittent, sporadic pains of undetermined lengths of time) instead of Type I (almost constant 24/7 pains) like it was before the surgery and so many triggers would bring on a flair up sooo often!  Here is an article I found on my FB group “End Trigeminal Neuralgia” and it is SO good!  It is hard to explain JUST how this feels, because I ‘look’ perfectly normal and try really hard to ‘put on’ that I’m not hurtling because I GET TIRED of always hurting.  But as this article says; ‘it is so much more than just the pain’ ~

Wednesday, 11 June 2014

Trigeminal Neuralgia : More To It Than Pain

Trigeminal Neuralgia is a horrendous, painful condition. There can be no arguing about that. However, there is so much more to living with a condition like this than just the pain.Dealing with any chronic illness can be soul destroying. Life can change so much. Relationships change, and sometimes sadly fall apart. People often can’t continue to work, which can bring financial problems, which then bring on more worries.So many aspects of life can become affected by chronic illness.

Emotionally, living with chronic pain can be overwhelming. People often say they feel sick and tired of feeling sick and tired. How true that saying is. Pain from a condition like Trigeminal Neuralgia can also be incredibly isolating. People often feel so very alone with their pain feeling that nobody understands, and often, that people who should care, don’t. That in itself can bring about problems within relationships and lead to serious insecurities.

Then there’s the fatigue. It’s not just a tiredness which can be shaken off after a good night’s rest. People living with pain can become tired, physically and mentally. It can be emotionally draining.

People can become frustrated and exasperated by what their illness does to them. They want to be able to lead the life they had before, but the pain just will not allow them to do so. They can feel despair and hopelessness when treatments don’t work, and they can begin to lose hope that anything can help.

Panic, anxiety and fear are three emotions which nearly every chronic pain sufferer lives with. These emotions could stem from worrying about their job or how to pay bills. Could be worrying in case the pain will get in the way of a family celebration. Or it could simply be worrying about what the future holds. Sometimes, living in fear of pain can be as bad, and controlling, as the pain itself. Even people who have pain remissions probably worry every day in case their pain returns.

People can get impatient, snappy, and often  irritated about things which would never have mattered before. Possibly even over-sensitive. A joke, or a funny comment may not seem so funny to someone living with pain.

They can feel bitter and resentful at the changes in their lives. They may feel like a failure, feel worthless, feel they are a bad parent, spouse, son, daughter, sibling etc. They often feel that they just can’t cope with this new situation they are in. Life can seem so unfair at times…….

Depression can easily take hold.

This drawing has been used with kind permission from the artist Michel EL Hachem
More of his art can be viewed on his Facebook Page or his Devian Art page

Probably everyone, whether living with pain or not, has experienced some of those emotions from time to time. But when living with chronic pain, these emotions can sometimes take over. It becomes an effort to do anything. It can become easier just to disappear into their own world, because the pain is too much. Too much to deal with and too much to explain.

All of those emotions are completely normal. But, we do have to try to change what we can so that those negative emotions are not allowed to drown us. We need to learn to ask for help and support. We need to be 100% truthful, especially with our doctors. They need to know how we are emotionally so they can try to treat us as a whole person, not just to try to treat the pain.

Nobody should ever be ashamed or embarrassed to admit how they are feeling. Admitting it is very often the way to move forward. There is help out there and there are people who understand. Everyone needs a good support network. But sadly, not everyone has that. Sometimes online support groups are a person’s only real support. These are often run by people in the very same situation, so they do understand, and often, together, they can find a way to help one another.

If you are feeling like this, please reach out for support and help. Don’t let depression eat away. The further you go down, the harder it can be to climb back up, so it is important to reach out for help sooner, rather than later.

Living with chronic pain can mean a lot of learning. ‘Learn to accept’ are three very easy words to say, but accepting this pain is far from easy. However, accepting doesn’t mean that we have to like the change, but by accepting it, it can be a bit easier to find ways of coping with it. Learning to realize what we are capable of, so we don’t set goals that are too high. Learning to realize when we need to rest. Learning to relax. Learning to make the best choices. Learning to make priorities. Learning what is right for ourselves. And possibly most importantly, learning to ask for help when we need it.

End Trigeminal Neuralgia


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