Feel like I've run a marathon just standing

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Date Joined Jan 2017
Total Posts : 57
   Posted 6/13/2018 9:04 AM (GMT -6)   
Just some background. I was diagnosed with lupus a year ago, late onset. Fibromyalgia about 5 years ago. Mindy disease 2 years ago. My kidneys have gone down to 30%. 2 failed back surgeries. Spinal stenosis. Arthritis in my back, all my small joints and hips. Need some advice. My lupus is kicking my butt and I think my fibro is also at work. Both legs from hips to feet feel like I've run a mile just walking to the bathroom. It doesn't feel like the arthritis as much as the nerves. My nerves feel like thier on fire. I used to run track and I swear it feels just like when I finished running. Could this be my fibro? My legs also feel like there is electrical charges going down my them and arms. It may sound strange but for the last 2 weeks I've had to do everything in 10 (of less) minute increments. The only reason I'm leaving my chair is to take out the dogs. If I get a shower I feel like I've done some great feat. I've lost eight pounds in a week because I can't eat. I had spinal injections a few weeks ago. This is the first time in 15 years they don't seem to be working. I would like to go see the doc and get a prednisone shot, but the effort is too great. My husband doesn't understand my reasoning. Anyway sorry for the rant. Has anyone experienced this exhaustion in your legs, the burning and electric like shooting down legs and arm. Is this the lupus, the fibro or maybe both? Also how do you manage to get important things accomplished? My house can almost be labeled a disaster area. There are only 3 people living here, but right now it looks like a dozen. I need any advice you have. Thank You all in advance. God Bless You and keep You in His hands.

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Date Joined Feb 2003
Total Posts : 16789
   Posted 6/13/2018 10:05 AM (GMT -6)   
Dustmite, you mentioned 2 failed back surgeries. Are you sure this hip & leg pain isn't coming from your back? Burning nerve pain can be associated with your back. Perhaps it's time to see a specialist for your back. I hope you can get in with someone to figure out what is going on. If a steroid is being used in the injections for your back, it may be too soon to start a round of pred, your dr can make that decision.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 6/13/2018 9:08:14 AM (GMT-6)

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 6/13/2018 3:10 PM (GMT -6)   
I have nerve damage as a result of lupus attacking my brain and nervous system at which time my diagnosis was changed to Neuropsychiatric systemic lupus erythematosus NPSLE. For me it began with numbness and electrical shocks and nerve pain in my face, then progressed down my right shoulder and arm. It became so bad that the injections given by my pain management doctor no longer worked, you can only receive a certain number a year so increasing them was not an option. My doctors got together and we decided that my best option was to try a nerve stimulator, I had that placed September 2017. The stimulator has helped tremendously, I not had to have an injection for nerve pain since.

Are you under the care of a pain management doctor? If so, you might speak with him or her and your rheumatologist on what next steps can be taken if the injections are no longer helping.

Prayers to you as I know how excruciating nerve pain is, nothing really helps.

Regular Member

Date Joined Jan 2017
Total Posts : 57
   Posted 6/14/2018 1:50 PM (GMT -6)   
Thank you both for your responses and advice. I have been in the same pain management c!inic for 13 years. I have an appt on the 21st with them and am definitely going to discuss this new nerve pain. I don't have another appt with my rheumatologist until August. I'm on pain meds and I'm surprised that these are no longer helping that much. I'm going to look up the other lupus that the second letter had talked about. Lupus is still very new to me, I really think the bacterial infection I had in my blood that turned to sepsis and shut down my kidneys kicked off my lupus. That's when my health seemed to spiral. But right now I just want this burning sensation and exhaustion to go away.I'm learning to prioritize and get the most done with the least number of steps. Again thank you for the advice and info. God Bless.
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