Have you ever had pain that you cannot get away from? It is there day in and day out?
chronic (of an illness) persisting for a long time or constantly recurringsynonyms: persistent · long-standing · long-term · incurable · © Oxford University Press
Well we are learning what that means and how to handle it.
Problem #1: Celiac Disease
It runs in our family--several cousins have it. We've wondered for a while if Elizabeth has it. The decision was made that we needed to know for sure before she went to college.
Symptoms that we saw
- brain fog She couldn't retain information that she was studying. Not good for Bible Quizzing or Geometry
- achy body We found that regular pain medicine (Advil, Tylenol) didn't touch it
- stomach pain It was often severe. Just looking at her made me hurt
- nausea Morning, noon & night
- diarrhea Enough said
- fatigue Going to class or work was VERY challenging. She missed many days because taking a shower wore her out
Mid-November she had blood work done. It was positive for Celiac and through a canceled appointment(God send!) we were able to get her in for an endoscopy in December. In order for the test show true results, Elizabeth had to to eat gluten for about 3 weeks.
She was a mess.
We got an answer right before Christmas and then she went gluten free. It took several weeks for the symptoms to leave but by the time she moved in to the dorm in January she was feeling better.
Brain fog & gut pain gone! Much more energy! Nausea gone and food sounded good again! Nails and hair growing much faster! NORMAL life!
Or so we thought. . . .
Problem #2: Mystery Symptoms
Unfortunately starting in March, Elizabeth had some new symptoms. Honestly, we had no idea what was going on and since she was at school it was hard to observe her. She came home most weekends and on Friday was a mess. By Sunday she would be a little better. Her symptoms were never the same day to day but these were the common ones.
- Feet and hands were very painful. Some days taking notes in class would be impossible due to the pain in her fingers. She was taking Aleve. We also used an essential oil lotion which would take the edge off. But it didn't go away.
- Extreme fatigue. Carrying a backpack and walking to class became a chore that would send her back to bed. Showering in the morning had to stop because that would wipe her out for the day.
- Felt very hot or cold but never had a fever.
- Insomnia. This seems odd considering how fatigued she was but the pain would keep her awake or she would be too tired to sleep. We tried some essential oils in a diffuser and that helped some.
So we called her doctor and she sent us to get more blood drawn and tests done. Then we set up an appointment to see a rheumatologist. It took a month to get in.
Our big fear was Lupus or Rheumatoid Arthritis. But what we really wanted was answers and a plan.
diagnosis -- Benign Joint Hypermobility syndrome (BJHS)
Well isn't that a mouthful? You have probably never heard of this. I sure hadn't.
The doctor measured how flexible she was using the Beighton examination and questioned her about injuries and the amount of pain she was having. At times her pain would be at a 7(scale of 10). That was while on the pain medicine, Meloxicam, which she was taking due to a trip to urgent care for how severe it had become.. Yikes!
Let's break it down. The first definition below made me laugh! Focus on the second one.
benign 1. gentle; kindly: synonyms: kind · warmhearted · good-natured · friendly 2. medicine(of a disease) not harmful in effect: (of a tumor) not malignant. synonyms: harmless · nonmalignant · noncancerous · benignant© Oxford University Press
So basically she is going to live. A very good thing. However that is not the whole story.
Joint hypermobility or laxity refers to the increased movement (range of motion) of a particular joint, which is also commonly called "double jointed." Many individuals have joint laxity at one or only a few joints. This can be an inherited feature (family trait) but can also be due to training(p 19). Joint hypermobility handbook: a guide for the issues & management of Ehlers-Danlos syndrome hypermobility type and the hypermobility syndrome Brad T.Tinkle - Left Paw Press - 2010
Doesn't that just sound like fun?
My girls have always been able to do the fun people tricks. You know pop your knees backwards, wrap your fingers in strange contortions, link your arms in back and move them to the front without releasing your hands &(my favorite) placing your hands flat on the ground without bending at the knees.
Well now we know why.
It's all fun until someone gets hurt!
The reason that Elizabeth is hurting is that her connective tissues(ligaments) are not doing their job. Her muscles are having to pick up the slack. They are extremely fatigued from overwork and irritated about the whole deal.
This is the unhappy part. So far the anti-inflammatory that she is on, Meloxicam, is doing an okay job but not great. However, that is not a good solution long term.
Goal: to go without the pain medicine forlonger periods of time.
How to get there? REST. She slept a TON when she came home.
Her symptoms have improved slightly because she is now on summer break. Not as much stress, no stairs and no taking notes does makes a difference.
But that is not enough. She needs to be able to do those things. Normal college freshman things.
TREATMENT. Each person with BJHS is going to have a different treatment depending upon their degree of pain. We have found in our research is that exercise is key.
Elizabeth hasn't been able to exercise due to problems with Celiac and the pain/fatigue from these new symptoms. She has lost some physical strength and her endurance level is very low right now.
MedicineNet.com addresses exercise as treatment "Proper physical fitness exercise can strengthen muscles and stability, but the nature of the exercise should be designed to avoid injury to joints. Sometimes physical therapy can help with rehabilitation of injured areas and can be especially helpful to prevent reinjury."
On Wednesday, we met with a wonderful Physical Therapist who measured Elizabeth's strength and gave her some mild exercises to start out with. She will be going 3 times a week and doing things at home each day.
Other approved exercise includes swimming, walking and using our stationary bike. As her strength increases, we hopeful that the amount of pain and fatigue will decrease. Thankfully these activities can be done at school as well so her recovery can continue when she returns to college.
This is going to be a long road to recovery.
But after the unknown she's been dealing with for almost 4 months it is good to have a plan. She's determined to become stronger and find a way to cope and function through whatever comes next.