In the last couple of weeks, my knees have become stiffer and achier. I didn't think much of it until yesterday, when it hit the tipping point and really bothered me. They were also swollen, and my bad knee (that hit the rock back in November) was warm. It was enough to make me worried (which must be the definition of what my 'tipping point' acutally is). I also have noticed a burning/stinging sensation in the tops of my quads lately, and that has gotten worse as well, upgrading to what I would call "pain" on occasion. So far, I would classify my symptoms with words like "weakness" and "discomfort", but I haven't experienced anything that I would describe as actual pain. So these new sensations are strange and a bit worrisome for now. I did some more googling and found that muscle and joint pain can be a side effect of tapering Prednisone. However, these symptoms can also be flares of the disease itself, so it can be difficult to differentiate. Hm. Sounds par for the "who knows" course of this disease. I hate feeling like a chronic complainer. What hurts today? Let me tell you about it ad nauseum because my world has become so small that it's all I have to think and talk about. I cannot wait to rejoin normal society and have a life that doesn't revolve around disease, meds, side effects, complaining about things I can't do, etc.
I wonder if I can continue to walk/jog. I've even been so careful... going out to grassy areas, just a little at a time, and only once or twice a week. Hopefully that didn't contribute to this knee stuff, but I hate taking chances.
Dog bite update: the damn thing got infected and I had to get an antibiotic. Turns out that you can't take Methotrexate while on antibiotics, so I had to push a dose back a week, which sucks when your primary purpose is waiting for the days to go by while the drugs do their work in your body.
But it's not all negative. I really do continue to get stronger, and I can measure it now that I'm lifting weights. As long as I continue to see the pin go into a heavier weight stack every few weeks, I'm happy. I also am starting to see a little bit of weight gain and definition in my arms. Just a little bit, but I think I can detect it. I can't wait to get my body back to a little bit of normalcy. Stick arms, be gone!
Hi Katie -
ReplyDeleteI'm very happy to hear the strength in your body and arms is coming back.
Isn't it awful when you ask your doctors a question and they just shrug and say they can't predict or nobody knows?
I get the quad pain too. I get it if I stand for more than roughly 5 minutes, or walk for more than roughly 10 minutes. (Although the symptoms and treatments are pretty much the same, the mechanism of my DM is slightly different than for your PM. The main theory for your disease is that your immune system is directly attacking your muscles. For my disease the main theory is that the immune system attacks the lining of the tiny blood vessels feeding the skeletal muscles, so the muscles die indirectly from lack of oxygen and nutrients, and a build up of toxins. So the model I have in my head is my quads are cramping from that.)
My knees used to bother me, but I used to walk for miles. Since I got my DM, the knees usually bother me less because they get less wear and tear.
My hips sometimes bother me, and my rheumy tells me this is because the muscles that stabilize the hips joints are weak from the DM.
Actually, the quads stabilize the kneecap don't they. Maybe there is a connection there?
You can take some antibiotics on methotrexate, but not all. I don't know the ins and outs, but I expect the class of antibiotic you needed for your dog bite was one you couldn't take on MTX. took antibiotics for a possible chest infection while on MTX.
I find www.drugs.com a good place to keep track of my drugs. If you register you can maintain a list of your drugs and get reports on their interactions, and what can and cannot be taken together.
For example, the calcium carbonate or calcium citrate you are taking to prevent the prednisone causing osteoporosis can't be taken within 4 hours of some medicines. Same thing if you happen to take a vitamin and mineral supplement, the iron in it has to be taken a 4 hours apart from some medicines.
I've had this for 2-1/2 years now. I look for small positives to keep my mood up.
Aren't you glad you were so strong before you got your PM? Imagine what it would be like if you had an ordinary person's starting point for strength. You might well be bed-ridden now. Plus you know how to train, so when you go into remission you'll have an advantage there.
You might want to start thinking about finding new activities that you can still do that won't remind you of what you can't do. It will be hard giving up your identity as an ultra athlete I am sure, and nothing is going to make that painless.
But distraction is good for minimizing pain. You know that from your athletic experience I'm sure.
Think about distractions. New friends and new activities like painting, writing, playing cards, knitting, talking politics, going to the theatre, book clubs. These might be things you have no interest in now, and know nothing about. But if you picked one, you could probably become comfortable with it in a few months.
(While your quads, gluts, back, abs, and shoulders are affected by this disease, usually the hands and fingers are okay. So I'm thinking painting or knitting would be things you could keep doing.)
It is just a suggestion.
And when you go into remission, as your strength returns, you can return to your athletic activities.
I hope the MTX works for you. It can take 3 to 6 months to kick in.
Last week I had lunch with my cousin who has PM, and she has been in remission now for a full year now (after 3 years of really active illness, including 1 year on oxygen)! She was very athletic too, and she is back to working out fairly rigerously, although she still is not back to a normal level of strength.
- Keith
Katie, in your previous post you asked about when the prednisone puffiness goes away. In my experience with prednisone for DM, and talking to patients who have taken prednisone for RA (rheumatoid arthritis), the puffiness goes away pretty quickly once the prednisone dosage drops enough.
ReplyDeleteThanks, Keith. Every day really is another step down a path on which I have no idea what I will find, both physically and mentally. I am hyper-sensitive to any physical changes that I feel and wonder what it could mean. I am also trying to engage myself in other activities to replace the sports, but I'm not interested in them... I'm interested in sports! I'm sure that I will adjust in time, but for now it's hard to cut off those interests so abruptly. The process of how we change our interests and goals due to a situation like this is an interesting concept to me, and related to some academic theories that I hope to learn more about as I write my dissertation.
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