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[wabbit]

Hello. Although I have been a member for a couple months, this is the first time I'm writing about myself. I am 49 years old, female, live in Michigan, and have a successful career. As we all know, Willis-Ekbom Disease (WED) an awful disease and extremely difficult to describe. The worse part is many doctors are uneducated in this disease. There are no tests to distinguish we have RLS; doctors go by symptoms if they know what they are doing. I have many conditions that have been going on for years but I ignored them because I considered them just aches, a little pain, and uncomfortable. When I look back symptoms go back to childhood, teens, and adult years, which I will mention below. In 2012, I was also diagnosed with WED, neuropathy, Fibromyalgia, and other conditions, which will be mentioned below

1. Epilepsy (9 years old and under immediate treatment). I am still under medical treatment although the seizures are under control.

2. WED (early teens). My legs would ache. My mother said it was growing pains. I would apply "Deep Heat" to my legs to get relief. Through time in my teens my legs quick aching.

3. Gastrointestinal problems (early teens), which still occurs today but is worse.

4. Temporomandibular Joint Disorder (TMJD) (2007). Although a doctor told me I have TMJD and to go to a dentist I ignored because the earaches and sore throat, which are symptoms of TMJD went away. In December 2011, I woke up with a severe earache and pain in my throat. I went to the doctor and received a letter from him that the problem appeared to be my jaw. I had an appointment with my neurologist the same month; he immediately sent me to an otolaryngologist; three diagnosed me with GERD and TMJD. Although they diagnosed me with TMJD, they couldn't do anything about it and said to see a dentist; however, the did not know a dentist that could take care of the TMJD. In the same month, December, I woke up in the morning with severe muscle pain in my neck in which the pain radiated to my teeth, jaw bone (TMJ), ears, throat, temporal area, and eyes. Due to nobody knowing what to do, I had to be my own advocate. I found a dentist, Dr. Ghabi Kaspo (also has an M.D., which helps to get insurances to cover treatment), that specializes in facial problems from the neck up. He diagnosed me with TMJD, myotosis, and Fibromyalgia. Fibromyalgia? What in the world is Fibromyalgia? I had no idea. He sent me to physical therapy and had a special night guard made for me. I started wearing the night guard in January 2012 and wear it to this day. The night guard would have cost me $3,000.00 because insurances consider it a dental issue, which most insurances do not cover. When I got the explanation of benefits from my insurance that I owe $3,000, the billing receptionist told me not to pay the bill because she would fight the insurance company. When I asked why they were doing this for me she told me that this is considered joint discrimination. I researched this on tmjd.org and found out they are fighting the insurance companies because the TMJ is the only bone in the human body that insurance companies will not pay for because they consider it a dental condition although it is a medical condition; without the TMJ we cannot survive. Without the TMJ being able to be active we cannot eat if we have locked jaw or severe jaw pain and cannot breath if we have a stuffy nose and cannot open our month if the TMJ cannot move. Six months later I got a bill for only $300.00. I found Dr. Ghabi Kaspo on http://www.facialpainclinic.com/

5. Beginning in February 2012: My lower legs began to deeply ache; I couldn't sleep. The aching got worse in March. It started occurring from the lower legs up to my entire thighs. I couldn't sleep (going on since my teens but got worse). I had chronic pain and fibro fog. The pain suddenly occurred all day and became worse when going to bed or sitting. My spine was burning, the feeling of bugs crawling over my arms and legs occurred, GERD became worse, irritable bowel syndrome IBS) became worse, my pelvic area was burning but I couldn't tell if it was internal or my skin, odd pain and sensations in the genital area, knot like feelings in my arms and legs (arms begin in my 30's), feet pain (since early 30's and was diagnosed with neuropathy in early 2012), lightning like pain in my buttocks and legs, throbbing thighs when in bed, weakness, shortness of breath and mild chest pain (began in 2010), ear pain, a one time incident with severe chest pain in which it felt like a knife was stuck in the right hand side of my chest. I couldn't determine if the pain was in my breast or chest. My husband called an ambulance and I was hospitalized overnight. I was diagnosed with costochondritis (inflammation of the rib cage). I had other numerous symptoms. I was told to see my primary physician, which I saw numerous times but every test given came out negative. He did not know what was wrong. I had an appointment the same month with my facial pain specialist. He asked me how my overall health was and I explained the pain in my legs and other issues. He checked my legs and diagnosed me with fibromyalgia. He wrote out a slip with a diagnoses of fibromyalgia, myotosis, musculoskeletal disorder, and TMJD to bring to my primary care physician. Also, I had insomnia since my teens but assumed it was due to the medication I was taking for epilepsy.

6. April 2012 (last time I saw my primary care and dropped him). I went in to see him for a checkup because the physicians at the hospital said to get a checkup by my primary care physician regarding the severe chest pain. I was shock at how he treated me and his comments. When he walked in the room to see me he had the look of here she's comes again. I described what occurred. Here is his response word for word: "You can't come in for every little ache and pain." I told him this was not a little ache and pain, it was severe, and felt like a knife was stuck in my chest and I had a very difficult time breathing. He said, "It might happen again." I told him I don't want it to happen again. He then said, "Do you want to be sick?" I don't him if I wanted to be sick I wouldn't be coming in to see him for treatment. I told him if he feels I am faking to give me a pill but don't tell me if it is real or fake. If I get better and the pain goes away while I'm taking a fake pill he will know it is psychological. He turned his back on me and while walking out the door said, "maybe it is a musculoskeletal disorder". I never went back.

7. Eight out of eleven doctors diagnosed me with Fibromyalgia (two rheumatologists, gastroenterologist, two anesthesiologists, gynecologist, a different primary care physician than what I previously had, and a podiatrist diagnosed me with fibromyalgia. Three doctors (the primary care physician and two specialists) implied it was all in my head. Due to having epilepsy, I could not receive pain medicine from the anesthesiologists without the approval of my neurologist. My neurologist prescribed me Mirapex, which significantly eased the pain in my body. Although the pain and aches still occurred, it was bearable. Suddenly, all the other symptoms I had were gone. Was Mirapex helping me with WED and Fibromyalgia? I did some research and the possibility is yes. I determined this by going to http://www.fibromyalgia-symptoms.org/fi ... itter.html

8. When I went to the gastroenterologist he printed me out a paper regarding Fibromyalgia, which listed all the symptoms. He diagnosed me with Fibromyalgia. Doctors belong to this site but we can get into some sections. Go to uptodate.com and type in Fibromyalgia then click on the section "Patient Information: Fibromyalgia (Beyond the Basics). The website is
http://www.uptodate.com/contents/search ... ia&x=0&y=0 You can get many medical conditions, including WED but under Restless Leg Syndrome is not as detailed as Fibromyalgia. Guess what? All the symptoms, except neuropathy, I have are associated with Fibromyalgia, including Restless Leg Syndrome. uptodate.com gives you the latest up to date information on medical conditions. Look at the date of the information at the bottom of the page.

Overall, what conditions do I have? Fibromyalgia, WED, and Neuropathy; Fibromyalgia and Neuropathy; or Fibromyalgia, which incorporates all the symptoms I have (not sure about neuropathy)? According to Dr. Daniel Clauw (not my doctor but a doctor at a workshop at University of Michigan I went to) said due to all the symptoms I have the RLS is probably due to Fibromyalgia. He said I have to check it over with my neurologist. Prior to going to the workshop I researched Fibromyalgia and found out it is now considered a central nervous system condition. Go to aan.org or the direct link
http://www.aan.com/elibrary/neurologyno ... 5060-00002 Now click on the PDF version to get a larger picture.

Is WED and all the other symptoms (except epilepsy; not sure about neuropathy) mentioned above symptoms of Fibromyalgia? Yes. Does having WED and/or all of the symptoms mentioned above (except epilepsy; not sure about neuropathy) mean a person has Fibromyalgia? No. Maybe the person has WED by itself. WED and Fibromyalgia are nightmares.

The two anthesiologists I saw highly recommended Cognitive Behavior Theraphy due to me not being able to take medication. The therapy will not cure WED or Fibromyalgia but it will help you learn to deal with the conditions. When I had an appointment with my facial pain specialist I asked him to recommend me a psychologist; he gave me the name of two psychologist. I selected Dr. David Cowan, a neuropsychologist in Michigan. He specializes in many fields in health psychology and has helped me so much; there is a tremendous difference in my life. Although I still have deep aches and pain, I am now able to deal with things. I am going to post another message describing what he advised me to do. Here is his website https://cowanphd.com/ Don't forgot to click on What We Offer, which is highlighted in blue.

While at the Fibromyalgia Workshop, I was the healthiest one with WED and Fibromyalgia there. I followed Dr. Cowan's advice. I'll probably never be 100% free of these conditions but because of Dr. Cowan's expertise and advice and guidance, I know how to deal with both although I still have my rough days.

We must keep in mind that doctors do not know everything. As I mentioned in my first post, doctors may be book smart but they do not know everything. Doctors also learn from patients. Doctors are human beings and like some people, some doctors do not have common sense or empathy. Keep in mind that we must also be our own advocate.

[Polar Bear]

A really good and descriptive post. I feel you could be writing about me.
I have had WED for over 30 years, I have jaw pain, neck and shoulder pain, burning sensations which are usually now under control, fibromyalgia, chest pain so severe that twice I ended up in ER with a suspected heart attack.

The chest pain was checked and I am OK, the pain was gastric and has been successfully treated with Lanzoprazole 30mg twice daily.
The fibromyalgia is treated with amitriptyline 20mg at night which also helps with sleep. This is not usually a good medication for an RLS/WED sufferer but I don't appear to have any negative signs.
Shoulder and neck pain is treated with co-codamol 30mg and this also helps with WED symptoms.
For WED I take ropinerole and tramadol.

My GP has always told me that fibromyalgia and WED are very frequently found together.
And of course WED and fibromyalgia very often go hand in hand with depression, how could one escape feeling depressed with all that is going on together with lack of sleep.

I am glad that your epilepsy is under control.

And pretty mad that your doctor could be so rude, so uncaring. Sounds like he didn't know what to do, and didn't want to be bothered trying to learn what to do.

Your comment that we must be our own advocate is so true.

[ViewsAskew]

Doctors can go much too far to the one side where they demand evidence for everything and if it doesn't fit, they think you are imagining it.

It takes a special doctor, I think, to be able to do both - practice the science and art of medicine.

So glad you eventually got answers and have found a way to get on with your life.

[badnights]

Thanks so much for that very informative (and well-organized ) post.

Peripheral neuropathy is common with RLS/WED.

[wabbit]

Beth,

Thank you for informing me that peripheral neuropathy is common with WEB. Do you know if peripheral neuropathy is part of Fibromyalgia? I'm wondering if I have one or two conditions (Fibromyalgia, which incorporates WEB, or peripheral neuropathy (diagnosed through EMG testing in 2012). I have an appointment with my neurologist next month and need to be ahead of the curve. I do not recall seeing neuropathy in uptodate.com but I could be wrong. I did see symptoms of neuropathy; I just didn't see neuropathy. Thank you.

[ViewsAskew]

PN is not a subset of WED symptoms, rather it there is a higher incidence of it in people with WED - but no formal relationship currently exists . We just know they are associate, not why or how. Small fiber neuropathy also sometimes occurs with WED - there are recent articles about it.

http://jnnp.bmj.com/content/72/4/555.1.full

I did a quick search on PN and fibro and immediately got many hits about PN and SFN.
http://www.breastimplantsupport.org/sho ... p?tid=5898
http://chronicfatigue.about.com/b/2010/ ... ndrome.htm
http://wehelpwhathurts.homestead.com/fibromyalgia.html

Note that none of those are research studies - but it's common enough that people are writing about it quite a bit.

Not sure that the doctors will be able to "assign blame" to one disease or another. I don't think they honestly know enough yet.

[wabbit]

Thank you Ann. Having PN, Fibromyalgia, and WEB all together can be confusing, especially when trying to treat or get control of things.

[EeFall]

I keep wanting to eat a carrot for some reason...wow you have had many things going on. I had TMJ and I think it was actually mostly fixed years ago (although the dentist/doctor thought it would fix my sleep apnea also, but it didn't work) by wearing a special mouth piece at night for a year or so...it is surprising how many types of problems that WED sufferers share...

[ViewsAskew]

I keep wanting to eat a carrot for some reason...wow you have had many things going on. I had TMJ and I think it was actually mostly fixed years ago (although the dentist/doctor thought it would fix my sleep apnea also, but it didn't work) by wearing a special mouth piece at night for a year or so...it is surprising how many types of problems that WED sufferers share...

Some people think that TMJ can be a type of trigger point referral pain. I absolutely know that my myofascial trigger points are much worse when my sleep is worse. And I don't have fibro or tender points. People with fibro often have sleep disturbances and they high higher incidences of myofascial trigger points, too. Hubby has apnea, mild WED and is celiac. He also has myofascial trigger points that get worse with poor sleep. \

Makes sense from systems theory perspective. The body is a system and one thing out of whack affects the next thing and so on.

[EeFall]

I keep wanting to eat a carrot for some reason...wow you have had many things going on. I had TMJ and I think it was actually mostly fixed years ago (although the dentist/doctor thought it would fix my sleep apnea also, but it didn't work) by wearing a special mouth piece at night for a year or so...it is surprising how many types of problems that WED sufferers share...

Some people think that TMJ can be a type of trigger point referral pain. I absolutely know that my myofascial trigger points are much worse when my sleep is worse. And I don't have fibro or tender points. People with fibro often have sleep disturbances and they high higher incidences of myofascial trigger points, too. Hubby has apnea, mild WED and is celiac. He also has myofascial trigger points that get worse with poor sleep. \

Makes sense from systems theory perspective. The body is a system and one thing out of whack affects the next thing and so on.

The TMJ was actually at beginning of the RLS problems. My dentist noticed that my jaw would actually pop out joint on the left side when he had me open my mouth wide while working on my teeth. I remember he actually jumped back from the pop my jaw made the first time he noticed it. I was always on the left side. I know there is some kind of spongy tissue right where the jaw hinges that seemed to move out of place.

The TMJ specialist was able to make a mouth piece that pushed my lower jaw forward while I slept and over a year or so the problem went away, but the RLS became much worse. I don't doubt that it and my sleep apnea, RLS, and even my sinus problems, allergies are all related somehow.

When I was about 12 years old I fell hard one day walking home from school from an icy sidewalk, not even sure where I landed, I think my tailbone. Anyway for several months I would get this pain that would come out of the blue, an intense pain in my back. My parents sent me to a back specialist, not sure now exactly what he did, if anything, but it went away.

Also not too long after that I went off a jump on my bike and landed on my head in the dirt. My mind woke up while I was being transported to the hospital by my parents, I don't remember anything between the jump and maybe a half hour afterwards. I was in the hospital a couple of days, but it went away.

2 years after that, about 14 years old, I had a Yamaha 80 motorcycle and I had been climbing steep hills with friends. I came straight down a hill and my brakes went out. I was going too fast to dump the bike so decided to ride it out to the bottom. I hit the bottom of the gully and woke up laying about 20 feet in front of my bike. That time I also had a concussion but swore my friends to secrecy for fear of having my cycle taken away from me.

Not surprising later on in life I was having neck problems and they did an MRI of my neck and I had a ruptured disk that had healed by itself but the pad was distorted and still is. I think it was around the 4th to 6th vertebra. The doctors said that it probably would be more risk to try to go into fix it than was worth it, as in accidentally making me paralyzed and I just lived with it until the pain went away.

So I kind of wonder if the TMJ, the head injuries, the neck injury, and the back injury, along with allergies to things like mold, pets, farm animals, grasses, and the sleep apnea, PLM, and all of that are somehow related.

The other strange thing is that when they looked at my back and legs they could tell from the cartilage somehow that I would be tall, like 6' to 6' 2". My father was 6' and my son is 6' 2" but my legs instead of growing out to 33" inseam or so stayed at 28". My torso is the same height as my dad's and son's but my legs never grew. So I wonder if falling on the ice somehow stunted my leg growth, maybe it did more than that, I don't know.

To top it all off several of my dentists have commented over the years that I have almost perfect teeth but they are abnormally small. It is like my jaw was made smaller to make way for my larger brain. My head is large. My grandfather's brain was actually donated to science because they wanted to study it because it was so large and with so many connections, and folds within the brain. He died from a massive stroke, but lived for a few days, and that was when they discovered the size and complexity of his brain, they also knew him, and that he had a large IQ.

[Polar Bear]

Eefall, a really interesting post. Throws up several insights into what seemingly unrelated events may or may not affect us as we go through life.