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Trigeminal Neuralgia, Sjogrens Disease or something else?
I am desperately seeking information to help my wife of 24 years. She was an active mother of four kids and a high school teacher 14 years ago. However, she began having extreme facial pain in 1999, and was initially diagnosed with Trigeminal Neuralgia and Facial Migraines. She was prescribed medication to help control this issue, but her symptoms soon began to affect other areas of her body and she could not seem to find relief through the meds. She was later diagnosed with Fibromyalgia, and a new prescription regimen began. Since that time, she has exhibited various symptoms which would suggest auto immune disorder, however, she has never had any prolonged relief from the MANY CHANGING SYMPTOMS. She now has no motivation to do anything outside of the house. She very rarely has the energy to do any of the typical household activities such as cook, clean, laundry etc. She does not sleep well most of the time; she runs low grade fevers; she takes pain meds daily. Recently, her eye doctor told her she has Sjrogens Disease. She has been to so many different doctors that I cannot even begin to guess the number, and we have spent thousands of dollars from our life savings over the last 12 years chasing a proper diagnoses and cure or treatment for her to have a decent life with our family. She is giving up, but I am passionately seeking an answer to this nightmare. I am hoping that someone out there may have some idea of who we can turn to for help.
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Hello skywalker. I do not profess to have ANY answers to your wife's problems. I am a 51-year-old high school teacher and I have severe body aches and low grade fevers for 3 years. I have been treated for PMR (Polymyalgia Rheumatica) which began with a course of steroids (prednisone). Initially, I felt great! But as I decreased the steroids (as one must) the pain and fatigue returned. Not I am taking methotrexate and trying accupuncture. I wish I could say I have found a cure, but I have not. I totally understand the "no energy" aspect of your wife's condition. We have a 10-year-old daughter and there is so much I want to do with her. I am hoping to hear stories from people on this group of things that work to relieve the pain and fatigue. Good luck to you and your wife!
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3 ReactionsThank you njr. I too hope that we may find answers through this forum. Have you ever been to the Mayo Clinic? My wife's pain management doctor suggested that she go to either the Diagnostic Center in Houston or to the Mayo Clinic. I'm curious which one would be better. Thanks for the well wishes and best of luck to you and your family as well.
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1 ReactionHello Skywalker, I am new here,I want to tell you that I had trgiminal neuralgia It is a very painful thing to have , I live in Indiianapolis In. I went to the Indidana university hospital and underwent gamma knife treatment ,I have been pain free for 3 years now. You can look up gamma knife on the web,I believe there are only 60 of these machines in the USA. I still have fibromyalgia and other illnesses but not to the extent that it was befor e gamma knife, also there is a web site on trigiminal neuralgia try it. RuthAnne
Hello Ruthanne, Fortunately, my wife has not had symptoms of trigiminal neuralgia for a few years now. However, she has experienced a multitude of symptoms over the years, and now deals primarily with widespread pain, fatigue and occasional migraines. She now seems to have swollen lymph glands under her arms and in the lower abdomen area. Doctors just seem to not have any reliable answers for us. Her pain mgt. doctor has advised her to go to either the Diagnostic Center in Houston or the Mayo Clinic. Not sure which would be better, but she is very tired of doctors. I am glad that you have found relief from your condition. Best of luck to you!!
Hi Skywalker,
I'm just so sorry for what the both of you are going through... I was wondering if your wife has tried hypnosis? I have heard of a few instances in which pain was reduced by professional hypnosis. Just a thought. There are binaual hypnosis tapes that are available over the internet ...and they have been helpful to me... but it sounds like your wife could use a professional. I wish you both the best of all good things.
Whoa. I'm sorry4 all ur troubles. Nice to read about true love.
Thank you Bettyann!! Yes, she actually went to a professional hypnotist a few years ago, but it did not seem to bring any noticeable relief. Her pain management doctor recently sent her file to the Mayo Clinic in Arizona as a referral, and she was notified yesterday by the Mayo Clinic, that they did not feel as though they could offer her any assistance with her condition. This was devastating, since she was praying that they would take her and possibly give her some answers and relief.Thank you for your well wishes, and all the best to you as well.
Thank you China! Best wishes to you!!
Hi sky walker. I too am sorry that you are not finding the answers you need at the moment. Just wanted to let you know that you have been in my thoughts. It never hurts to maybe get an opinion from another speciallist. Take care Piglit
Thank you. Your thoughts are well received.