Question
QUESTION: Hello Amelia,
I do hope you can help me.
My daughter was diagnosed with Fibromyalgia a couple years ago. She saw a Rheumatologist who pressed here and there and decided that's what it was.
What I need to know is about the symptoms. I will number them for you.
1.) every so often she will come out of her room limping like she sprained her ankle. We can't find any swelling and it goes away the next morning. We have spoken to her Primary Care Physician about it. She thinks it could be the Fibro as it call cause muscle pain and you have muscles every where.. That's all we know.
2. She gets pain in her fingers making them hard to bend. Is that part of the Fibro?
3. Often her arms and rarley her hips will go numb. Such as when something "goes to sleep". And it hurts to beat the band when she tires to 'wake it up'. Is this Fibro?
4.And this is the most confusing symptom. Ear Pain. The ENT think it is the TMJ and the TMJ Dr thinks it may be the Fibro? I don't know who to believe anymore.
Our TMJ Dr is a specialist. At one time he did regular dentistry but has some type of nerve problem in his hand so now specializes in TMJ appliance therapy. She has been seeing him for a few yrs now. The ear pain was under control till she had an ENG (type of ear test) back in May of 09.
5. Can Fibro lie dormant in your body for some time before it really begins? My daughter is 26 now. I remember back in high school her having arm and hand pain, but it was a once in a while thing so we never did too much about it.
So in short I need to know if all this is Fibromyalgia or something else the Drs haven't picked up on yet?
thanks for your time,
Joyce


ANSWER: Well, it could be both.  Having fibromyalgia doesn't mean you can't or won't have any other disease or syndrome.  My personal observation is that many of us folks with scleroderma have fibromyalgia OR the joint and muscle pain associated with scleroderma comes together under the criteria for fibromyalgia.  The diseases already share the problem of profound fatigue.

There are a lot of symptoms reported with fibromyalgia, with long-term pain and fatigue being the most prominent.  Some other symptoms are "jelling," where, for instance, if you sit for a long period and then get up to walk, it feels like your muscles have tightened and "jelled" and it takes a few moments of movement for them to feel normal; sleep disturbances; and tender points and/or trigger points in various areas of the body.  My mother gets rashes that break out suddenly but don't itch and resolve in a few days. I don't. Some people also, when you start talking about the pain, can talk about a "traveling" effect - one day the knees, the next the elbows, etc.  There are tons of other reported symptoms.

After many of us have struggled for a long time with every anti-inflammatory and pain med there is, there is finally a medication approved for fibromyalgia, Lyrica.  It's not perfect and as any medication has side-effects.  Your daughter should discuss it with her doctor, though.  Lyrica and medications like it are making some difference for some patients.  Personally, I have mostly eliminated the low-level, gnawing joint pain that was so frustrating. I still have tender points that make me feel bruised all over, but it's manageable.

Another huge help is regular exercise.  I can't recommend it enough and I was certainly not a proponent before actually doing it.  I know how hard a struggle it is to even begin, and then having to search for the right exercise for you (an elliptical machine is mine,) but a slow work up to 30 minutes or more a day of something like walking, biking, or elliptical really can help you.  They key is to keep it up.  I've been slacking lately and can really notice the difference in pain.  Time to get back on track!

Your daughter may benefit from a fibromyalgia support group, medication, some physical therapy, and/or an exercise trainer with fibromyalgia experience.  Talk to her doc about how some or all of these might improve her disease management.  As for other possibilities of her symptoms, there's nothing stopping her from keeping a symptom diary and alerting her doctor when there's something outside of the ordinary.  I know it can sound like you're complaining about every little thing, but some pattern (or interruption of the pattern) may be just what her doc needs.  She should note time and day, what the symptom is, how long it lasts and what makes it go away.  It could also be helpful to note what she was doing at the time (or before) and the weather or temperature she was in.  Often with fibromylagia, docs will also be curious about mood, since depression can also be a complication.  Sometimes treating depression can improve symptoms, too.

---------- FOLLOW-UP ----------

QUESTION: Good ideas. She has been on Lyrica and it did next to nothing. We are now trying Savella.
I've done some homework and found that sometimes combinations of 2 different antidepressants can block the pain receptors in the body. If you need the site, let me know.
I've had her exericsing and it seems like it only increases the pain.


Answer
I've known people on antidepressants for pain and they've also reported that it helped.  The exercise thing is going to be different for everyone and there will still be pain, as it is even for "normal" folks.  It takes a long time of very slowly increasing and LOTS of stretching.  I take a mild pain med after, mostly for osteoarthritis, but I'm sure it eases the FM, too.

I hope she gets some relief soon.