Lots of times I think it's hard to tell what's going on with our bodies. There are just more unknowns than medical science wants to admit to us or themselves. There is nothing wrong with letting any doctor know that you would like to try something other than drugs as your first option. (Ironic isn't it, after you had to fight so hard to get started on the DMD?)
I remember you telling us about some similar aches and pains in the past. Since they are taking center stage again as autumn comes upon us, I'm wondering if what's going on now might be related to temperature, humidity and barometric pressure changes. I know some people don't believe things in nature can influence our bodies. But I know that the (way far away) moon causes the mighty ocean's tides to rise and fall. Our bodies are a collection of tissues with an extremely high percentage of water in a closed container. Why wouldn't we be at least as vulnerable?
After many years of experiencing it, I am still surprised by my own increase in pain and stiffness every spring and fall (especially when temperatures are rising and I assume Mother Nature's heating pad will feel good). It usually hits hard for a few weeks before both joints and muscles readjust. I notice lots of other people in the pool and at work are complaining at about the same time.
Like you, I've searched for an answer to the pain and multiple movement difficulties I've had over the years. The pain was sometimes bad enough to stop me in my tracks. Other times it was what I call a 'wearing' pain - not overly intense but so constant as to wear down my energy and motivation. It was one of those invisible disabilities we so often talk of here. At one point, I was diagnosed and treated for fibromyalgia. I suspect the fatigue and pain I had then were early symptoms of the MS.
It's clear I have osteoarthritis. This 'old people's' arthritis became visible in my hands in my early 30's. It's in lots of places now that I really am getting old. It's in both knees. One needed replaced but the other rarely hurts. The surgeon said it looked worse inside than the films indicated. It's in my back but didn't show up clearly on MRI until years after the pain came to stay.
There isn't a lab test for osteo (or degenerative) arthritis. Studies haven't shown much relation between severity of disease in x-ray findings and severity of pain reported. Sometimes there's lots of arthritis and little pain. Sometimes lots of pain for little arthritis. Makes one think there are other factors.
Celebrex does help me but I only realize how much when I have to stop taking it prior to tests. It's another one of those expensive drugs that I stick with because I don't have another good option. My doc didn't think there was much cardiac danger with the 200mg daily dose I take, especially when it offers the best non-narcotic pain relief for me.
From time to time I've also been treated for bursitis, tendonitis or some other inflammatory type processes. I've had more than my share of hand and foot surgeries to move or correct things that somehow got out of place, enlarged, compressed or contracted. The hand surgeon told me once that he suspects I have some type of connective tissue disorder that causes these disruptions. He didn't know what. I decided against starting a blind search or repeating tests that had been negative in the past. I put my energy toward medical and surgical symptom relief to stay as well and functional as possible. Any single process that may be creating my multiple symptoms has remained satisfied to disrupt my life without becoming a full blown (detectable) disease.
MS however, did finally show itself clearly enough for diagnosis. And although it doesn't explain all my medical ills, it has certainly contributed. I now recognize that a good deal of the stiffness and pain I experienced in the past originated in muscles rather than joints. MS may not effect the joints or muscles directly. It's effect on nerve conduction sure does change how they both function.
Intermittent spasticity from MS explains some of the variations in findings on physical evaluation by different clinician's. I had tension in my muscles for so long I forgot it hadn't always been there. Or I assumed the muscles were tense because of pain. Now that MS has added a cramp type of spasm to my experiences, it is easy to see that pain is the result rather than the cause.
I had an excellent PT evaluation recently that confirmed muscle spasticity. I learned how to keep many muscle groups stretched in just three sessions. My co-pay for therapy is high so I let the therapist know early on that my goal was to do things on my own at home. She made sure I was doing stretches right, gave me several stretch bands to work with (you change color and increase resistance as you improve) and printed out a books worth of illustrated examples.
Alex is absolutely right that activity is key. But so is proper rest. Like MS fatigue, joint and muscle pain require us to constantly monitor ourselves for the optimum activity level on any given day.
Sorry for going on and on here. I can't know what's going on with your body. I guess it all struck a nerve and sent me on a journey over the years. There were times I felt I was losing my life to symptoms and searching (not to mention the dollars and dignity lost). Guess I'm in grieving my loss mode today. I enjoy your tales of active family life and am hoping you can find enough relief to let go of the details of figuring out symptoms while there is life to enjoy.
Mary
Jess,
I have many of the same issues and I find that exercise is important. Days I do not do yoga stretches and exercise I learned in PT I have had it. My PT guy taught me to keep going even when my back and shoulder lock up. You do need to have a good PT who teaches the right exercises for situation. I also watch what I eat food can add to inflammation.
I look up medications and turn them down if I feel they do not work for me. It makes my PCP mad but oh well.
Alex