Trigemenal neuralgia/nerve pain

Does anyone with lupus/connective tissue disease suffer horrendous nerve pain ,i read so much about the joint related pain and admit i do have joint issues ,but apart from the tendon,muscle pain my most definate pain seems too be nerve pain .What promted me to go to the dentist seems to be trigeminal neuralgia,its agony ,i have had it intermittent for years but of late its really evident and all seems to be linked with my other nerve related symptoms.Its just one thing after another ,theres a def link with lupus and my nervous system ,wish there was a pill that could ease the nerve issues and lift my depressed mood at the same time ,i really hate this bloody disease;(brave

25 Replies

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  • Are you taking pregabalin? That is supposed to deal with the nerve pain quite successfully, I understand. You must be in absolute agony, it is tooth ache times at least 5, no?

  • Ive heard of pregabalin,in australia i was offerd it for fibromyalgia its under the name of lyrica out there ,but dc said side effects not great so put me off ,im so sensetive ;(

  • You could try it in v low dose, side effects not as bad then, must be better than being in agony. I'm so sorry you're still suffering, you're having such a bad time.

  • Thankyou ,i hope things are good with you?;)

  • Thank you for asking, i thought I was starting to improve but out of the blue I developed an infection, so now on antibiotics which got the lupus back to naughty levels. This illness is so unpredictable, just when you think you're finally getting there, it trips you up. One day at a time, I guess.

  • Yes and its a right royal pain in the back side! I suffer with this but thankfully sporadically, its horrible. But I have never had any medication for it, I didn't know there was any... The things you learn here :)

    Brave, I'm so sorry you are still feeling so poorly. Did you manage to get to see your rheumatologist in the end? If not, maybe you could ring and have a chat with specialist nurse and see if they can get you in. Explain that you are really struggling.

    As for that pill you want, if you find one, please let me know :)

    Wish I could do more to help, sending you gentle hugs xxx

  • i had a cystoscopy yesterday,all went well ,i see endocrinologist next week ,and rheumy in feb sometime ,i dont have a nurse for rheumy ;( its a bit backward here in jersey .Its like the pain travels round in circles in my body ,mainly neck,shoulders,spine ,back ribs,chest,upper arms ,mostly tendon and nerve pain ,i wish there was a cure ,or i was able to come through this and regain quality of life like so many others i read of;( im starting to think of getting some antidepressants ,perhaps it will lift my mood so the pain will seem less intense and dibiliating?but im scared the anti-d will stimulate my system ,and i dont need that,i dont know enough about them ?Oh silvermist this is all proving a little too much ;(

  • Aw bless you Brave. My friend has just had an op for TGN and due to get the other side done later in the year. I know through her what the pain is like and she is on pregrablin too. I'm not surprised your mood is low too. I really hope that things improve for you. My friend saw a neurologist for her TGN and I don't know if you have or if that would help? xx

  • Hi brave, so sorry to hear about the terrible pain you are in.

    I work in a dental practice, so I see a few people who suffer from trigeminal neuralgia. One lady who had a operation to treat this. It changed her life, as she was constantly doped up on painkillers for years. The operation places a piece of teflon (yes, the pan coating) at the sight where the nerve is being pressed & causing the pain.

    This lady did not have lupus, so the cause may have been different. But worth investigating, no less.

    You would need MRI scans & referral to a neurosurgeon, to see if this would work for you.

    Very best wishes. X

  • thankyou,i have a funny feeling its being triggerd from a site on my spine ,i have two very sore spots and it seems the more i sit and rest pressing against the spine the more the trigemenal neuralgia starts,i feel the pressure building in my neck then its starts around my eye down my cheek ,one side of my nose and into my upper back teeth .Im not sure if this is typical of trigemenal nerve pain?but dentist has explained its sounds like this?were gonna try and replace a filling in the hope it settles the teeth ?but i have a funny feeling this is part of my lupuis pain?

  • It does seem to be a common thing among we lupies. Fortunately I get parasthesia rather than neuralgia.

    I hope you get some help. X

  • Awww hunny I will send you a pm, just a tick...

  • How horrible brave I hope you can get it sorted x

  • I thought I was starting with this on Monday. Out of the blue I was getting very sharp, painful intermittent shooting pains down the right side of my head, radiating from my scalp,down the side of my eye, through my ear down to my jaw line. During the evening in eased and luckily yesterday it appeared to have gone completely leaving me with nagging intermittent pains in my head. It did not feel like a headache. Luckily it passed, I am just hoping it doesn't come back.

    Oh, I have mild SLE

  • it bloody hurts eh?

  • Do you think mine sounds like that? I do.

    I'll see if it happens again - hope not :(

  • It does to me ;(

  • Hi Brave, After a course of chiropractic treatments, I now have a regular appointment about every 10-12 weeks (My joints are hyper-mobile and move about like nobody's business!). Before I had constant nerve pain on the side of my face - worse after a visit to the dentist. Keeping the mouth open during treatment was a nightmare - not to mention afterwards! The pain was always there, worsening during a flare (anywhere in the body!) or on lupie-days generally. I am over-sensitive to a range of stuff, particularly chemicals, but take paracetamol (half a T or less) when pain unbearable - otherwise avoid medication. Chiropractic treatment has been a great help to me and I have no nerve pain at all at present. I hope you find something that helps you. Good luck! :)

  • Thankyou ,i have a cranial session booked next week ,i have to try something

  • That's great Brave, Cranial may be even better - but ask if it would be a good idea to have a check up on spine too. Good luck! :)

  • do you mean doc to check spine ?or cranial therapist to check spine?thankyou

  • Sorry for the confusion. I meant for the cranial therapist to check it out - or advice if you would benefit from chiropractic treatment (on the spine) as well. :)

  • i have definate spine issues ,just had an xray as 12th vertabre is extremly sore to touch and is affecting the connecting tissue ,ive felt it for months ,the problem is im so sore to touch that any little stretch or manipulation has adverse affects ;(in a real pickle

  • Both therapists would know what to do (and what not to do). Hope you feel better soon and that treatments work out just right :)

  • thankyou

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