Seeking Advice

Posted by skywalker1265 @skywalker1265, Apr 29, 2012

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.

@china

Is your wifey feeling any better. All in my prayers.

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How adorable u sound like u luv her a lot.

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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How is ur wife. Things better.

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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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.

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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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

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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True love that’s what I’m looking for …
Rox

Liked by LizKat

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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Thank you piglit.

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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Hi Skywalker,
Doesn’t hurt to make supportive friends either. We all have a common bond in one form or another and it’s always helpful to learn from other.
Take good care of yourself!
Roxie

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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Lizzie that post was comprehensive and very consiserate! You see skywalker? You can benefit with us because like I said there are so many commonalities that you’re bound to get something out of being a member.
Hugs,
Rox

@china

Whoa. I’m sorry4 all ur troubles. Nice to read about true love.

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Always here if you need me Take care

As a retired nurse with many health problems, my heart go’s out to your family. The only suggestion I have is find a top notch rhematologist and have her tested for autoimmune disorders. I suffer from an autoimmune disorder that has led to depression, heart problems and many years of ups and downs. I am now unable to work and that has been stressful, but I am adjusting. Whwn your wife finally gets a diagnosis and gets treatment,she too will learn to adjust to her illness and manage it and not allow it to manage her. It tool 6 years for me to get a diagnosis. Hang in there.

See a Rhumy. Sjogrens and many other Autoimmune illness can cause the symptoms. Sjogrens is generally thought of as dry eyes/mouth. often blown off by providers. IT can affect every organ in your body. I was dx with Sjogrens, Raynauds, Thryroiditis, ?lupus, RA and ……Bcell Lymphoma. ALL at once! (The Rituxan infusions where difficult, but post treatment what a world of difference, a gift. But, they wear off and long term affects are just as frightening.)Yet for 4 years I went and complained fo body aches that moved around. Chronic neck pain (lesion was growing around the base of my neck and I was told over and over it was from chronic inflammation….cancer. Dry eyes, mouth, skin, overwhelming fatigue, sleep disturbances (waking achey, have to move) random nausea, hightened and then decreased sence of smell. One can view it as a nightmare.. and it was and has been in MANY ways BUT…during this time I increased fish oil, flax oil, consumed large quantities of water, and still do. I reviewed my diet and although I have always been conscious of good nutrition made changes anyway to see if these helped. They have. Little or no sugar, aside from natural occuring in fruits and juices etc. (more difficult that it sounds…sugar is in everything!) I was an avid dairy lover…just fermented now (yogurt and keifer daily) sometimes soft cheese like goats, feta etc. Now am trying a curtailed gluten consumtion and don’t see much additional change, but will keep at for awhile longer.
The only med I take is xanax in the pm for a 6 hour straight sleep period. Occ have to nap in the day time. I exercise on good days, cause when the bad days hit, not much gets done….the thing is they are not as common as frequent as they where although they are unpredictable at best and this is fustrating…..but learning to go with the flow and not feel like a slug…it is what it is.
It is hard to make changes, comfort measures if you will, they take effort, energy and commitment…not easy when you are so fatigued/fogged.
You sound like a commited partner, I am lucky to have this also and between the two of you hopefully you will find a better spot. Meds are not always the anwser…I have opted so far not to take any DMR’s etc. Nothing will eradicate these ills but comfort measures and some lifestyle changes go a long way…And alternative therapies may also help….massage etc, etc.
Good Luck to you both.

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