Let’s talk about specifics while I’m actually madly using movement as medicine in my own life. I use it all the time, obviously, or Limberation wouldn’t exist! Right NOW it is critical to just getting through my day.
I am in the process of changing medications. While my rheumatologist said “The medication’s stopped working”, now that I’m a few days down the track I tend to think it may not have quite stopped completely. Maybe a drop of 50%. Because I’m in a LOT more pain now than I was on Thursday when I saw him. Today is Monday, for reference. Thursday morning was the last dose of the old medication.
Why medications stop working for me is an as yet unsolved mystery, so for the point of today’s discussion, just accept it happens for me. We’ll investigate why another time.
I was hoping the new medication would at least provide some improvement in the short term. Not so far (but it has only been five days). In an attempt to get a handle on when I might expect an improvement, I looked up the information.
Improvement after SIX MONTHS? I should say the documentation accompanying the medication and detailing two of the clinical trials provided more nuanced detail and I might see improvement by four weeks, so I’m hopeful! Even so, given that several areas of my body start getting painful at about 3 am, are REALLY painful by 7 am and that lasts until about 10 or 10:30 am depending on when I start moving (i.e., get out of bed), I have to get through the next weeks, whether they be four or 24. As my rheumatologist very sweetly squeezed me in on the last day of consulting prior to the Christmas break, we really didn’t have time for lengthy discussions, it was a fix-the-immediate-issue type consult. I will see him again in January and have the opportunity then to delve into the detail! I’m just grateful I was seen at such short notice! As he has me on Prednisolone (bridging) for six weeks, I’m figuring four to six weeks is the expectation for SOME degree of improvement.
The current list of sore bits?
- Both shoulders (not too bad)
- Both ankles
- Soles of both feet
- Posterior leg muscles, roughly around the back of the knee (could be gastrocnemius origin, not sure)
- Right wrist (not bad)
- Left wrist (EXCRUCIATING) – UPDATE: this is actually De Quervain tendonitis, diagnosed Dec 28.
- Both hands, some fingers worse than others
- The other day my neck was also in the mix, but it seems to have settled down – after some remedial exercises.
I think I’ve listed everything.
When I say the left wrist is excruciating, I mean when I load it (that is turn it, or try to lift a coffee mug) it feels like I’m being stabbed with a scalpel. When I once used that description of pain to my GP I saw the “you don’t know what that feels like” look on her face. I said, “I once stuck a pitchfork through my foot. Completely through. Into the ground on the other side.”
“Ah”, she replied, “You know what a puncture wound feels like.” Yes, sadly (and stupidly), I do.
In this particular case, it isn’t just the wrist itself, it is the tendons from the thumb, right where they pass the wrist joint. OUCH!
Anyway, back to movement! So my day goes like this. Wake up, in pain in all the various spots listed above. Clearly getting dressed and having breakfast are challenging. Getting that bra on….. you guys don’t know how lucky you are, trust me. I take my Prednisolone. Yes, ideally I should take it at night to counteract the development of inflammation overnight, however, if I do, I get NO sleep. So that’s not an option for me. I like my sleep! I need my sleep!
I potter about having breakfast (Pred has to be taken with food), gently moving everything until I can actually get dressed. By 10 or 10:30 I can walk. I mean walk outside, movement. This morning I monitored the improvements for the purposes of this article. By 300 metres the pain behind my knees had gone. By 500 metres my feet were feeling heaps better. By 1 km my ankles were improved. I have stuffed ankles anyway, the surgeon in charge of feet in my world wants to replace my ankles, they are mechanically so bad. So given they are likely a hot target for PsA inflammation, I’m not expecting them to resolve completely on a walk, but they are now much happier that when I left the house.
Having got the lower bits & pieces thawed out, I then tackle my hands. Warm, salty water in a bucket. Various finger movements, here are some.
I will also make fists. I hyerextend the fingers too, but do that out of the water.
By about 11:30 am I am actually a functional human being again. Pretty much. Am I completely pain free? No. Can I walk, use my hands? Yes.
Now I can use my hands, I can do remedial exercises for my shoulders. As I’ve detailed those at that link, I won’t repeat myself today.
I haven’t mentioned any pain medications have I? Well, no, because as I may or may not have mentioned before, the run of the mill pain meds we are allowed at home don’t really work for me most of the time. Endone we don’t even bother trying any more. I do take Panadol Osteo, it does help a little bit. This morning I didn’t bother with Tramadol as I wanted to compare to yesterday (when I did take it) and as I suspected, no difference. So I can now put Tramadol on the list of “May Work On Lucky Days” – or with some types of pain, but not all. Not working with what I’m dealing with at the moment, obviously. I do know about keeping severe pain under control, that it is harder to get back under control if you let it get too high on the scale. I’ve had a hysterectomy and a total knee replacement among other surgeries, I learnt stuff! I also know when a medication is not working.
For the record, I was born with these resistances (pain meds and sleeping meds, both). Most of my life it wasn’t a problem. I didn’t have pain and I slept like a log. Until I got sick. NOW I need the damn things to work, but the chances are slim! I also have wonky/broken pain sensors. Some, not all. I do wonder if that has anything to do with why pain relief doesn’t work with any reliability either. Pain to do with muscles, tendons, entheses I feel. Other stuff, like stomach ulcers, an infected tooth or abdominal adhesions – those pain sensors failed the quality checks during assembly.
My GP asked me had I always been that way. I said I have no idea – to ME I was normal. I didn’t know other people felt pain when I didn’t, plus I was rarely sick (other than the usual measles, mumps, chickenpox etc in pre-vaccine days). I did have meningitis at about 12. I did tell my GP that I remembered saying to people after the birth of my first child , “I’m not sure what all the fuss is about, it isn’t that bad.” The look of shock on her face was quite dramatic! I think that was the point she jumped on board with the pain management crew at the Barbara Walker Centre who first suggested I had faulty wiring.
Prior to my appendectomy, I went from absolutely no pain to agony in the space of about 30 minutes, BUT that really isn’t a reliable indication, as that can happen with appendicitis. No pain with my gallbladder either, BUT I had a porcelain gallbladder and often there is no pain with a porcelain gallbladder. So again, not conclusive evidence. Indicative, perhaps, as the surgeon did seem a little surprised that I had no pain given the state of the thing.
Without using Movement As Medicine I’d be in BIG trouble right now.
Are my legs, feet and ankles sore when I take those first 300 or so steps? Yes, I’m not going to lie to you, they are sore. I don’t start while they are still really painful, I do that thawing out first, pottering about. But no, I don’t leave the front door feeling normal.
Do I have a good rest of the day? Yes, pretty much. Yesterday, I still reached my four kilometres and 7,500 steps targets. I’m slow, but I’m moving. These items list in reverse order, by the way. The 0.36 was at the end of the day, just to reach the targets. I was up earlier yesterday too, so thawed out earlier.
My fingers and hands are still swollen and they actually feel swollen. But the soreness has gone for the day. I am NOT lifting weights at the moment. My assessment is (an example) the load on the wrists of holding the dumbbells for the bicep curl is not going to help the wrists. The biceps are fine! I could probably risk lower body and core stuff, but my body is fighting a battle with itself at the moment, so I’ll keep it to remedial level activities.
I will rinse and repeat the day just described until the new med starts to kick in. I will add activity intensity as I deem appropriate. For example, if I get the shoulders settled, I’ll hit the lap pool. The shoulders aren’t too bad, so I think I may be able to calm them down relatively quickly with focused attention.
Here’s the caveat. Make sure you talk to your doctor/(s) and/or physiotherapist before using Movement As Medicine. My purpose is to provide my experience as encouragement from a practical perspective. To illustrate the value of moving. Having said that, not all conditions are the same. Different patients have different comorbidities, different degrees of severity: a host of clinical considerations. Always consult YOUR health care providers.
The below is from an interview with Arizona-based chronic pain specialist David Tom, M.D.
I have subscribed to this theory since late 2014 and it has served me well. Eight years and I’m still moving. Movement has helped me get through six medication changes (this new one is my seventh medication).
My final tip for the day? Get bright shoes! They lift your spirits!