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First post - need opininions
3 Replies
Gayle - November 17

Hi Everyone,

I have lupus and a whole load of other things including Fibro. My question for you all is this: Does anyone have trigeminal neuralgia? I have pain on the left side of my face and head, even the left back of my neck. The pain can becomes excruciating. A neurologist gave me Lyrica which also treats trigeminal neuralgia and Fibro, Lyrica helps other pain I have, but did not particularly help the face/head pain. The pain feels like lightening bolts. I can't even touch my face when it happens. The strange think is that I had episodes in 2000 and 2003 when I was pregnant. Now I'm getting the pain and I'm not pregnant. But what's even stranger is that Prednisone takes the pain away. Nothing else does, not even Oxycontin! My rheumatologist can't even explain why the prednisone gets rid of it. Which makes it hard to even get a prescription for it from anyone. I guess what I'm trying to figure out is: is it Fibro or Lupus or what??? It's so frusterating. Any opinions please!


shonlaw - November 18

hi gayle, i am a registered nurse and from my experience with my patients and myself and my grandmother that prednisone (or any related steroids like decadron) does help with the pain. before my pregnanacies when my flare ups were not this bad, i would call my md and request a shot and a medrol dose pack(more steroids) to get me through. then i usually handled the rest with aleve or nothing at all. the steroids mask the pain. and its hard to get them because over use or long term steroidal therapy is not good for your could have so many negative effects on multiple body systems. if you google " prednisone abuse or overuse" i'm sure you will find the specifics. I never used them for more that 2 weeks. as a matter of fact i just used the decadron shot and i felt good for about 3 weeks. docs never gave me a diagnosis for of trigeminal neuralgia but i also suffer from that and it travels along the whole left side of my body. and none of those other pain meds do anything except make me sleepy. and while i am not a doctor i think that if you are suffering from lupus. the symptoms mimic fibromyalgia. my docs always thought i had lupus until the lab work was not definitive. thus they diagnosed me with fm. best of luck to you and i send many soft hugs.


n-need2 - November 20

Hey Gayle, I am new here, but my grandmother has had trigeminal neuralgia for many, many years.....and I have seen in fall to the floor with the pain, so I know what you are talking about...and the same deal applies with her, she can use steroids and it helps, it helps her so much, she can get out and do things that normally she cannot do. Things that she has not done in years for the 2-3 weeks she takes them, and maybe 1-2 weeks after.... However, steroids are very hard on the body, that is why they try not to prescribe them to younger people on a daily basis, they do only mask your pain symptoms, and they cause bone density to deteriorate along with a host of other side effects. I dont know if this has answered any of your questions but this is what little I know...
Good look.....I hope you feel better soon.
Amy Q


n-need2 - November 20

Gayle, Sorry about the typos, I have seen her fall to the floor.....and Good LUCK...I am in a fog.....tonight, having a very hard time concentration....



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