Comorbidities

[bethsunflowerfield]

Hi, I have EDS classical, and of course I suffer from comorbidities. But this last month I have been diagnosed with two new ones- TMJ dysfunction which causes trigeminal neuralgia. It's agony. I'm in agony all the time. And the issue is, I have really high levels of stress at the moment, which makes the TMJ worse. When the TMJ gets bad, it gets very inflammed, which suppresses the nerves. This is what causes the trigeminal neuralgia. But then, when these two disorders get bad, or my stress levels get too high, I've started suffering from migraines. I had never suffered from them before, and actually ended up going to A&E the first time, as the pain was so severe, i got blurriness in one eye, and was vomiting.

I've suffered from two since, and it's absolutely excruciating. Like unbearable- like I would literally rather die than be experiencing that much pain.

I'm so depressed at the moment, I feel like my EDS is just gonna keep getting worse throughout my whole life until I am completely unable to look after myself, work, or do anything I want. I'm constantly in pain and it's making me so depressed. I don't even want to get out of bed this morning. Another issue is that my partner isn't disabled, so he can say I'm not alone or that he gets it but he doesn't! I feel like no one in my life actually gets it. It's nice to have people online who get it but when it comes to real life I feel like no one I know could possibly understand what I'm going through.

[Jay66]

Hi Beth. TMJ dysfunction and TN are both very common amongst all EDSers. I have TMJ dysfunction and have had TN in the past. TN is recorded as potentially being one of the worst pains it is possible to have, so you have my huge sympathy for that one.

You need to get your gp to send you to an appropriate specialist to get it sorted. You can get a nerve block done, for example, or the whole nerve removed. My TN was caused by a wandering tooth which had moved in my jaw to press against a nerve - so I had a perfectly healthy tooth removed (the agony - that was before we had found out how to deal with my total local anaesthetic resistance) but it stopped the TN within a month.

I recently had a bout of having a migraine every single day - it was unliveable. I discovered that when you feel a migraine coming on, take extra NSAIDs such as aspirin or ibuprofen. Normally I can't take them either but when it is migraine vs bad stomach, I will opt to quell the migraine first.

You can mitigate the TMJ problem also with physio exercises from the Muldowney Protocol. muldowneypt.com/ehlers-danl...

I am constantly in pain too. It isn't good. I have to let go of all the bright ideas I still get - oh, I could do this or do that or change the other - and find simpler ways to live with my condition. I am very lucky in that my non-disabled husband is (now) so understanding. He takes care of me and tries to make sure I don't overdo it, although he doesn't always know when or how to. Your partner cannot feel your pain, but is trying, and that is so helpful.

🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻

[Saassii in reply to Jay66]

A few suggestions and none may help.

Make sure there's no mold in your home and no signs of water intrusion, those with EDS are particularly susceptible!

Ensure you're not on the pill or any other form of hormone manipulation. That gave me hideous migraines.

Ensure you're having a little Celtic sea salt or Himalayan sea salt every day. A little tiny put under the tongue at onset of headaches/migraine can assist. One tends to think that the careful electrolyte balance must have therefore not been met.

Stay extremely well hydrated. Use reverse osmosis water to reduce chemical exposure which can also contribute to the body burden producing migraine. Again keep the balance adding additional water by adding additional salts and minerals in those salts.

Could some deep tissue message around your neck, shoulders, back etc may help relieve some tension and definitely release muscles which are too tight and overworked due to EDS.

Try an infrared sauna, that may assist with detoxifying your burden some and return more homeostasis.

Reduce overall exposure to chemicals which are closely associated with endocrine disruption, therefore hormone deregulation, therefore migraine.

I'm so sorry for your struggles and pain, may Jesus give you grace and help.

You may find some excellent pain relief with medical cannabis if it's permissible where you live. Otherwise look at making your own. It definitely helps with nerve pain and it has a synergistic effect on the endocannabinoid system which again promotes homeostasis.

[bethsunflowerfield in reply to Saassii]

Thanks guys!

My partner is extremely helpful, he is registered as my carer and helps as much as he can. He's just trying to make me feel less alone, but at the same time it just makes me feel more alone. He'll be there physically for me as much as he can, cuddling me, rubbing my back etc, but platitudes about not being alone just hurt me in the end.

I think maybe a nerve blocker could help, but wonder if by the time I get through to a specialist, I may not be suffering from the TMJ and TN as much? I don't know. I'm seeing my doctor next week so hopefully that'll be helpful.