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Posted 3/7/2010 9:36 PM (GMT 0)
So this is my other post about the leg stuff. It started as one of my first real indicators that something wasn't right with me while I was on my way to a diagnosis. It started as a burning type pain and often accompanied by an ache in the tops of both thighs. Slowly over time it spread from my thighs into my lower back & stomach and then down my calves at times and then into my shoulders and arms and back of my neck.

When I got pregnant and all my symptoms went away all this did too. It just started coming back in my thighs/back. Before I was put on neurontin which I stopped along with a lot of other things because of the pregnancy. Not that it helped much before anyway lol I also had many tests done. 2 EMG/nerve studies which were normal, I saw/see a neuro at the same hopsital I see my rheumy who did the pin test and it showed patchy loss of sensation(the poke of the needle)similar to vasculitis. I have NEVER had any weakness associated with my symptoms.

The only other indicator of anything I have had is a slightly elevated CPK ranging from the 100s-300ish. I have been told this is not a high range.

With all that said I dont know what this even is or if anyone has had "peripheral neuropathy type symptoms" without weakness. If so, is there a name for this? Or can it be included within "Autonomic Nervous System Involvement" which I believe I have and have had many other symptoms of.

I would greatly appreciate any stories if you can relate or anyone that might have some information I can look into. Thanks so much. -Britt

Posted 3/8/2010 7:08 AM (GMT 0)
Hi Britt,

I felt led to respond to your post as I have struggled with a lot of leg pain. Unfortunately we (the doctors and I) have not got to the bottom of it. I fear that there will not be an answer found, and it might be something that i have to live with from time to time :( Maybe, maybe not. I experience sometimes faint, other times intense burning sensations in my quad muscles. Sometimes the pain is so great that I don't want to even stand on them. Something like getting ready for bed and brushing my teeth, etc can seem like hrs as I try to just stand for a few minutes in front of the sink. All I want to do is be off them. There have been times (many) that I can't sleep as the burning and hotness keeps me awake. One night it happened that the only way I could get to sleep was to lay still with ice packs on my legs and that seemed to help over time...I fell asleep. Over the last two years the leg problems have come and gone. It has also got so bad (brought on more the last time from emotional stress and a bit of extra physical stress when I was possibly in a flare already) that I needed the help of a walker to get around :( Thank the Lord that today I am up walking around and have enjoyed the sunshine (with protection on of course) many times this week...even went and sat by the ocean yesterday. What a blessing.

So anyways, I am no stranger to a burning leg pain of my own. I don't know if ours is the same or not, but I feel your frustration nonetheless...sorry you're experiencing something similar too :( I have been seen by my rhuemy..he ruled out myositis..he sent me to a neurologist who has done some shock testing recently on my nerves in my legs, and also poked me with needles in my thigh muscles to test the response I think...he said everything looked fine. No muscle disease apparent. He was also sending me for testing of my CPK level..haven't quite got the results yet as this was recent.

I don't have too much to offer in the way of advice, I just wanted to write you to letcha know you're not alone with this and I do hope you find your answers. I'm still waiting for mine. I know that I'm not a "weakling" and have used my legs well over the years. They've been good to me with running, and cooking for a living (lots of standing). I am no stranger to toughing it out...but I have no clue as to why out of the blue it seems my legs are so different to me. It's like I had an exchange with someone else. One day I was training for and accomplished a half marathon, and another I was struggling to walk a few blocks..I've slowly but surely worked my way back up to walking for 30min on a somewhat regular basis. I am so thankful for that. I love the fresh air.

Anyways I wish you well, and hope more people have advice on where to look for now for your legs. I'll be watching to see what others have to say. Take care.

-Ellie
Posted 3/8/2010 12:29 PM (GMT 0)
I wanted to ask if this pain follows the nerve pathways, I know this sounds crazy but if it follows the nerve pathways they could always try a nerve block. Also leg pain can be caused by problems in the back so consider an MRI of the back to check for bulging disks.
Posted 3/8/2010 4:25 PM (GMT 0)
Lupus often causes neuropathy, it doesn't have to be an additionally disease or condition - I used to have a lot of tingling & pain in my feet, legs, and hands. Fortunately it comes & goes with flares, etc. and I don't have any now. Mine wasn't bad enough to need any extensive pain medication, but was definitely lupus associated.
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