Monday, June 27, 2011

Lupus Isn't Pretty

 I came across an article today on webMD, the author and the link to the full article are cited below. I must address these points as are from my experience. I have read numerous articles that have similar points - while I know I am a very advanced case, I have to reply.
Managing Lupus Pain: Finding What Works Best for You - Full Article -
Christine Miserandino  

Exercise. Some people who have lupus swear by the benefits of getting regular exercise, while others can't get out of bed, and find it close to impossible to even think about going to a gym.
As a dancer, being active is still so very important to me. I can barely walk now. I try, and admittedly push it against orders, but I need to do what I can. Yes I am mostly bedridden, so I try physio from bed and use my body as I can to get stronger. When someone says, just use the stairs, it's good for you, it's not understanding the physical limitations that are stellar. It is not easy to make it to the bathroom, forget Zumba (which I would love to try).

Massage Therapy. A soothing massage can help ease muscle tension and aches, but if you are sensitive to touch due to fibromyalgia or any other condition that is secondary to your lupus, this treatment might not be right for you.
My pain is much more than aches. I understand many people undergo similar and when air hurts, a slight breeze, the thought of a massage isn't going to work unless the practitioner understands the true nature of the disease and the consequences of the impacts. The costs are high for such therapy also, while it is so lovely and I was lucky enough to be sent for a massage from a good friend once, my RMT was very knowledgeable. However on an ongoing basis - not an option as stated in the paragraph, my lupus pain is also severe, as is my fibro pain, and my RA pain. Pain in many many layers at the same time are hard to understand even to us going through it. What works one minute might not the next. Think about the consequences - bruising, impacts, blood clots, etc. More than just an 'ache'.
Medications. Many patients work with their doctor to find the right combination of medications that may help reduce pain.
The combination of many medications, plus other medications to manage those side effects, plus more to manage those side effects is a dangerous spiral. I have mentioned many times that I am not a candidate for most medications, and due to that I won't put myself through that nor do I have the cost involved in using such medications. I am happy that people can find a cocktail that works in managing their symptoms. However as said 'Many' patients can work with it, but then others do slip through the cracks, as if you actively follow my story you can see.
Other Strategies. Some people prefer to try heating pads, yoga, meditation, physical therapy, or similar measures that can help decrease the pain of lupus.
 Sometimes heat helps, sometimes cold helps, but it's again not a rule such as 'always use ice for swelling'. Yoga, please refer back to the first rebuttal. Meditation, no amount of unicorns/rainbows/waterfalls in my head works. Yes I have worked very hard on physio, does it help my pain, not one bit. However I have gotten stronger and luckily I kept the dancer flexibility I have always had. 

I am frustrated and very much at my wit's end from the day I have had. Part of is when I hear a "Have a pain-free day!" That would be wonderful. It won't happen, so it is another reminder that there is nothing for me, and I am but one voice. 

The real story needs to be told since this is such a misunderstood disease, even by people that are living with it. Living with it does not always mean fighting it.


  1. I read the article you are talking about and I found it so full of NO information it was silly. Just space filler. I am not sure what WebMd was thinking even posting it.

  2. So true. I hear, Lose weight, the pain will improve. I would love to lose weight and have (down to right at 200 lbs from almost 300) but the fibro/spondylostheosis doesn't allow much exercise.

  3. As someone who has battled lupus for 30 yrs, I think this is a good article. It aknowledges the extremes of not being able to get out of bed etc, but also offers well rounded positive advice. The biggest weapon we have with lupus is staying positive, and thats a mighty challenge with the chronic nature and depression causing disease itself. Meditation is not about fairies etc, its about connecting your mind , body and soul to help you feel positive to fight this, about your own mind and the strength that can hide helps me.