Have you ever thought that you had the answer to a difficult question but only come to find out later that you didn't have the whole story?
That is the road that we've been walking with my daughter's mysterious pain and fatigue.
She has had severe pain in various placed in her body since the end of March. After several doctor appointments we thought we had a diagnosis and treatment plan. Elizabeth has Benign Joint Hypermobility Syndrome(BJHS).
BJHS is PART of the reason that she was hurting. Basically her connective tissues(ligaments) are not doing their job. When her muscles have to pick up the slack then they become extremely fatigued from overwork.
We started to strengthen those muscles though physical therapy. She has been going 3x a week and doing exercises at home each day as well.
3 IMPROVEMENTS
- Endurance. Even driving for more than 10 minutes at first was hard. But by late July she was able to do 3-4 hours shopping trips without too much trouble. Awesome improvement!
- More physical activity without pain. At first 1x a week at PT was almost too much. After her session, she would be wiped out. She progressed to 3x a week being very doable and she could still function the rest of the day.
- Strength increase. The reps and weight on each exercise that she does each day has increased steadily. She is so much stronger. Carrying her back pack at school doesn't take all her energy for the day.
PT seemed to help up to a point. All of the above improvements are awesome but we wanted her to not have to take her pain medicine on a daily basis.
Standard prescription opiates only reduce pain by about 50% in a mere 30% of people with this disease. Many people with fibromyalgia become addicted to prescription pain killers. (source)
Trying something new
One of the best things about this summer is that Elizabeth has really started to "own" her illness and give input on it. Being 19 and independent will do that to you. This is a very good thing. Of course I've been researching and trying to find solutions (what mom wouldn't) and she has been doing the same.
We both came to the realization that she has MANY of the same symptoms of Fibromyalgia. Elizabeth wrote a GREAT Fibromyalgia 101 post on her blog so I'm not going to cover that. Go check out her fun quirky blog--you won't regret it!
The thing about Fibro--there's no definite test for it currently. Basically you rule out all the other "bad" stuff first. Which is what we have been doing all summer long. After going to the neurologist, having an MRI of her brain, doing muscle testing & more blood tests we came up with nothing.
Which is a GOOD thing but did not give us a diagnosis.
FRUSTRATION!
The next time that we saw her primary care doctor, she also brought up Fibromyalgia without any prompting from us. After testing her pain points(which she has many). She advised trying Lyrica to treat her symptoms. She basically said if that works then you probably have Fibro. We researched the drug and Elizabeth decided she wasn't willing to experience the side effects to gain "some" benefit.
She went back to researching possible treatments of Fibro and came to me the first week of August with the idea of trying the Paleo diet. Many people with Fibromyalgia are helped and see improvement by eating Paleo (source). Much of the pain is from inflammation in the body and the Paleo diet is naturally anti-inflammatory because it avoids grains, dairy & sugars.
So she tackled one part of the Paleo diet. She removed dairy from her diet.
I know I know . . . that seems like something we would have already tried. My family has thing with cheese. Milk eh . . not really. But cheese? Yeah we eat a lot of it. And ice cream? It's our go to dessert around here.
So anyway we had not gone this direction because when you can't have wheat for your Celiac disease then you really want to keep your ice cream and cheese.
Dairy free
The first week was terrible. She still craved dairy and her body was NOT happy that it couldn't have any! She had some tummy troubles and didn't feel well. We realized this was probably a detox reaction & so with encouragement to keep on going, Elizabeth did great.
By the second week she was going without her pain medicine off and on. She still didn't trust that it was a real thing to be pain free.
As we entered the third week, I could see a physical change in Elizabeth's appearance. She was dropping pounds and her clothes were fitting better. The inflammation that her body was dealing with was going away.
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Alternative pain medicine - this will seem random but there is a point
5 years ago I had hip surgery. I will have more surgery down the road. I have pain every day.
Most of the time I just deal with it because I don't want to stress my liver by taking Aleve.
I had been seeing information about turmeric as a pain reliever in my reading about reducing inflammation for Fibro.
So I decided to try it. It was easy to mix turmeric and black pepper and fill gelatin pills.
Funny thing . . .it worked! My hip felt better and my knee which hurts from compensating for my hip felt MUCH better as well.
Turmeric is one of the most powerful anti-inflammatory spice with amazing healing and pain-relieving properties. According to many studies, turmeric works better than many analgesics at relieving pain. source
So around the same time that Elizabeth went dairy-free, I gave her the turmeric to try. Her pain was MUCH reduced because of removing the dairy but some days she still hurt. Usually after PT so she started taking turmeric every 4 hours on those days. We were amazed that she had MUCH less pain!
We both feel very comfortable treating her pain with turmeric because it is a food & it has not given her any side effects. Some people have tummy troubles when they take it but so far she has been fine.
The plan to go forward
Elizabeth is back at school.
Currently she is living in the dorm and eating at the cafeteria while avoiding gluten and dairy. Is it easy? No. She also hasn't pursued the rest of the requirements for a Paleo Diet as of yet.
One big change at a time.
School is hard.
Fatigue has crept back in with late nights, studying and lugging her back pack/laundry/stuff up and down flights of stairs. She was sick over the weekend and it didn't surprise me.
What did surprise me was that her immune system was able to handle it. We tried some Musinex for her clogged head and she stayed away from sugar which seems to cause flares ups for her. By Monday she was bouncing back and feeling some better. That is a big change! Without having to fight the inflammation in her body, her immune system has been able to handle this little cold.
So her priorities are these
- avoid sugar, wheat and dairy
- get as much sleep as possible
- do PT 1x a week and try to fit in exercises at school
- take turmeric for pain unless it is terrible and then use prescription
School is doable. Severe pain is not a constant companion.
We have so much more hope today than we did in June or even early August. Life will never be "normal" for her but it is manageable.
Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning. Albert Einstein
**Nothing in this post should be treated as medical advice. If you are having similar symptoms you should seek the advice and care of your physician. The following is merely a narrative of our experiences thus far in a journey of difficulty"
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