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skywalker1265

Seeking Advice

Posted by @skywalker1265 in Autoimmune Diseases, 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.

Tags: Other

hillarylane, Anonymous, China and 1 others like this
njr

Posted by @njr, Apr 29, 2012

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!

skywalker1265

Posted by @skywalker1265, Apr 29, 2012

Thank 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.

Bettyann likes this
ruthanne

Posted by @ruthanne, Apr 29, 2012

Hello 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

skywalker1265

Posted by @skywalker1265, Apr 30, 2012

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!!

joanneo

Posted by @joanneo, May 4, 2012

Hello 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

joanneo

Posted by @joanneo, May 7, 2012

Hi skywalker just letting u know I am thinking ofu. Jo

lizkat

Posted by @lizkat, May 4, 2012

Hi 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

China likes this
bettyann

Posted by @bettyann, May 4, 2012

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.

skywalker1265

Posted by @skywalker1265, May 4, 2012

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.

china

Posted by @china, May 4, 2012

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

skywalker1265

Posted by @skywalker1265, May 4, 2012

Thank you China! Best wishes to you!!

piglit

Posted by @piglit, May 4, 2012

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

skywalker1265

Posted by @skywalker1265, May 4, 2012

Thank you. Your thoughts are well received.

china

Posted by @china, May 13, 2012

How is ur wife. Things better.

skywalker1265

Posted by @skywalker1265, May 14, 2012

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.

piglit

Posted by @piglit, May 14, 2012

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

roxie43

Posted by @roxie43, May 14, 2012

True love that's what I'm looking for ...
Rox

LizKat likes this
skywalker1265

Posted by @skywalker1265, May 15, 2012

Thank you piglit.

roxie43

Posted by @roxie43, May 15, 2012

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

roxie43

Posted by @roxie43, May 15, 2012

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

piglit

Posted by @piglit, May 15, 2012

Always here if you need me Take care

lizkat

Posted by @lizkat, May 4, 2012

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

China likes this
china

Posted by @china, May 9, 2012

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

china

Posted by @china, May 9, 2012

How adorable u sound like u luv her a lot.

annp

Posted by @annp, May 25, 2012

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.

powerofpositive

Posted by @powerofpositive, Oct 1, 2012

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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