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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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Hi Skywalker
I am so sorry to hear that your wife has fibromyalgia (FM for short). I was diagnosed with FM almost 20 years ago. All the women in my family have it, except for the minors. The current theory is that we FMers have exceptionally sensitive nerve endings and our brains say that we are in pain too quickly. Personally, I don't think they have it right yet. I think it is a type of autoimmune process at a neuronal level tied to a specific area of the brain, but, I will have to wait for science to catch up with me 🙂
Before being diagnosed my Mom and I called it our "pop-up disease' as we never new what symptom would pop up next. It can be very frightening when new symptoms appear. I'm an old hat at it now and my general rule of thumb is that unless unconscious, I give it three days to clear up and if not call the doc.
FM has many many symptoms in common with autoimmune diseases, through the years I have been diagnosed with Lupus, Mixed Connective Tissue Disease and Migratory Polyarthralgia.Before diagnosis I was sent for all kinds of expensive work-ups, neurology, rheumatology,Serology, CT scans, nerve conduction studies, and on and on. I have specifically looked for a doc that isn't referral happy and willing to sit with me through whatever new and bizarre thing is happening.
I routinely have low grade fevers, extreme fatigue, migraines all the things your wife mentioned.
FM doesn't go away, but it can be managed.
You asked for help and this is what I recommend:
If not done already, both you and your wife should do some reading up on the FM diagnosis. Google it and your should be fine.
You said your wife has given up. Has she tried some of the on-line communities specific for FM that have people with FM she can post to? I highly recommend this. If she isn't up to sitting at the computer or just is too beaten down right now to do so. I suggest you do it for her. Feel free to post at a site for patients, just as you did here and you will get an overwhelming response. Print out the responses and read them to her. Offer to type in her questions, topics, whatever posts she likes. Bring her back copies of those replies. Just as she needs support, you do as well so I encourage you to keep posting here.
Each of us FMers reacts differently to different treatments, especially meds. It really is a trial and error thing with meds. I do best with Lyrica (intended to help our overactive nerves) Zoloft (an antidepressant that works wonders on my fatigue) and Tramadol (the only thing that has ever helped with that awful flu-like-skin pain). I take many other meds for all the associated issues, vicodin for my spinal neuropathy and bilateral ulnar nerve impingment, pramipexole for the restless leg, ambien and hydroxyzine for improved quality sleep, wellbutrin for depression and lack of goal directed behavior associated with long-term use of zoloft, and seroquel for depression. And there are many other medications that can be tried, many of which I have been on! I suggest that you look for any type of doctor, be they GP, rhuematologist or neurologist that is experienced in treating FM AND is willing to explore using adjunctive medications. I have been to docs that won't prescribe anything but lyrica and an antideressant and that just won't do.
OK that should be enough to get you started in the right direction and this post is way long.
Let me know how things are going? Please tell your wife that I said Howdy!
LizKat
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1 ReactionHi NJR
Here's a hug for you being a parent with fatigue producing illness. My baby is 6 and I hate not being to keep up.
LizKat
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1 ReactionHello skywalker. It must be very difficult for the two of you. Don't give up and find a doctor who you feel comfortable with. Can u get a referral from your primary physician Fm cannot be cured but can be controlled so wife can have quality of life I have Fm but have many specialists. Prayers are with you two
Hi skywalker just letting u know I am thinking ofu. Jo
Is your wifey feeling any better. All in my prayers.
How adorable u sound like u luv her a lot.
How is ur wife. Things better.
Things are about the same. She was very upset when the Mayo Clinic contacted her and informed her that they were not going to take her as a patient, stating that after reviewing her medical history, the staff does not feel as though they can offer her any additional treatment. We are both very perplexed by this decision. Her regular doctor is now working on getting her an appointment with the Diagnostic Clinic instead. Thank you for your concern!! Hope you are doing well.
Hi skywalker so sorry that things didn't work out as you wanted them too. Hopefully your dr can organize with the Diagnostic clinic and youwill get the help and answers that you need. Your in my thoughts Please let me know how you get along. Always here if you need me Take care Piglit
True love that's what I'm looking for ...
Rox
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