Lupieliving

Because of my overlapping lupus, fibromyalgia and neuropathy, I suffer from intense, widespread muscle pain . . . all the time.

In my best of moments, I experience muscle pain that seem familiar to my pre-lupus self. The foot and leg pain from walking all day in high heels. The knots on my shoulder from working long hours. The back pain from working out the wrong way. The arm aching from moving boxes all day. Pins and needles from the blood circulation being cut off in some parts of the body. The jaw pain from chewing on something hard. The butt hurting from sitting all day. My hands hurting from typing all day. I feel all these muscle pains, all at once, all the time – and these are just the milder manifestation of the pain.

Most of the time, the pain is a lot more excruciating.  It burns.  Not the way fever burns but the way you would burn if your body was a tire and it was skidding on pavement.  It burns like a roller flattening out asphalt to make pavement.  It burns the way salt scrub might feel on a burned skin.  Then there is the sensation of being punched.  It really feels like a bunch of people are actively kicking and punching me.  My body then feels bruised.  Sometimes these muscle pains feel “loud” and while invisible under my skin, the pain seems to bouncing off the muscle walls.  There simply is no good way to explain how bad all this feels.  And it is so pervasive, in its reach and duration.

So how do we cope?  Everyone has a different way to ease them of muscle pain.  This is how I try to deal with it:

1. Hot Water Immersion:  Hot showers, baths, hot tubs, sauna, floatation, whatever it is, i gravitate towards it like a bug to a light.  I cannot really function without first relieving my stiff and painful muscles aches in the morning with a nice hot shower.  I keep a shower bench in the bath as showers are usually very exhausting.
2. Heat: The other way to relieve the muscle pain is heat.  Moist heat works best but any heat with do.  The larger the heating pad, the better.  Sometime I need a heating blanket.
3. Stretching: I do light stretches through restorative yoga.  It’s really the stretching and light strengthening aspects of restorative yoga moves that i really benefit from.  Rigorous positions, even downward dog, is too much for my limbs.
4. Meditation:  If you are able to do it, this is something that has helped me greatly.  You can start slow and meditate anywhere.  To start, a guided meditation might be more helpful because it helps us think about the pain.
5. Moving: This is not the same as exercising.  I was told that exercising is good for us and muscle pain and that might be true, but my body tended to disagree. Maybe I’m just not there yet and i have too many other issues.  But I find swimming (if you have the energy) or just walking when you can, helps relieve the muscle pain.
6. Resting: If you are able to get some sleep, that is great but I have a real difficult with sleep.  But I still rest.  I let my body dictate when and I try to rest as much as my body asks of me, without staying in bed all day. Too much rest, like too much exercise is counterproductive for us.
7. Massages:  I am a big proponent of massages.  I try to get it as much as I can.  It helps relieve the pain, helps with circulation and allow me to rest.  Depending on your body, you should talk to your masseuse about what you need.  For example, I never get my arms massaged because it it very painful no matter what pressure they apply to it.
8. Medication:  Lastly, if you are able to take medication that works for you, it is not a bad idea to add it to your pill box.  While I am not a fan of the pill, I have learned that pain changes you and if there is a way to relieve it without much side effects, it’s worth taking.  I started taking gabapentin and cymbalta.  I am unsure of the benefits yet but will keep trying.

I am always searching to add to my list of go-to’s for relief.  Do you have anything that works for you?