My name is Eva and I have been trying to beat Lupus for 25 years. I have had neurological symptoms before but this time around they seem a bit worse. My docs call it small fiber or peripheral neuropathy. I get strange feelings in my hands, arms, feet and legs mostly. Sometimes I get what feels like a sting or insect bite and nothing is there. Sometimes it feels like water might be running down my arm or leg and again its not really there. I also drop things very easily when this flares up its like my hands just go and can’t hold anything. The worst part is the tripping up of words. i try to speak ( and I am normally fairly articulate) but sometimes when I am talking I can’t make the brain to word connection and it is embarrassing. I also stumble a lot when i have these symptoms. I don’t understand how Lupus affects my brain and nervous system so this freaks me out. I understand joint pain, anemia, high blood pressure blah blah blah but not CNS lupus. Can anyone else relate?
I get the neuropathy too. It's the strangest feeling. For a long time it was as if my legs couldn't feel much. Lately I've had the sting or water running feeling on my legs, especially my shins. The tripping up on words is part of the "lupus fog" which is very common. Either you forget what you're talking about, forget words or can't access the word you're looking for, or you have memory problems (like that one time I forgot how to spell my name... that was a fun one). For the fog, I just learn to laugh at it. I mean, I've only been spelling my name for how many years now and when someone asks me how to spell it, I completely butcher it. There are also lupus headaches that can occur with the CNS lupus. Hope this helps! Just know you're not alone and you're not crazy!
I have the cns issues too. My legs will just give out on me. I cannot speak because the connection between brain and mouth short circuits. It is much like a stroke. It will last a few hours at it’s worst. Then everything comes back again slowly but surely. It is really unnerving.
Hi Eva,
I have these exact same symptoms but I have never got confirmation of the cause. I have recently found out I have ischemia on my brain from vasculitis (sorry for the spelling). I am not sure if this is the cause or if they are two separate problems- I will ask the neuro at my next appointment. The bug site feeling in my legs is the worst. So far the only thing that has helped is prednisone and I hate it. I am glad I am not alone with these crazy symptoms!
Meg
my main symptoms are Neurological and I have everything you just said, but almost daily. I take Gabapentin for the nerve pain, and hit helps a bit. I also have foot drop due to some disconnect from my brain to my foot, and all EMG's have come back normal so we've figured its my CNS. I also get the joint pain and have severe fatigue and lots of pain. I hope things get better, make sure you write down your new symptoms and let you Dr. know. Good luck!!
I also have the same symptoms. I have cervical and spinal stenosis. Neuropathy pain is horrible. Regular pain meds don’t work. Gabapentin or lyrica can help. I use ludacsne patches on lower back and neck. I also have special cream for my burning feet. Much worse at night. If u have neck or back issues get them checked. Good luck and I hoping these symptoms pass quickly.
I have the neuropathy also. I have it mainly in my thighs and feet. Mine in my right thigh feels like I have a surge of electricity going through me. It can be very painful but it does usually leave. Ahh lupus fog is alive and going strong with me. Most people don’t have patience when it happens so I always look to my husband to finish my sentences.
These two symptoms are very common with lupus patients. While it is a bit scary at first it is probably the few things we all have in common. I think if you know it is common it won’t be so scary.
Hang in there and take care,
OMG!!!!! I have had that, I had that same sensation in my face, ears, and arms. I also have a very hard time getting words out and it is really embarrassing especially at work. I can know what I want to stay but I almost get something that feels like it is blocking me from saying it. These symptoms were really bad after a really bad flare that I experienced, I explained it to the doctors but they didn't give me any answers. I don't think doctors really know enough about Lupus. Im sorry that your experiencing this but I am so happy that you shared this on this site. You are not crazy, I have this happen also and most likely it is something going on with the Lupus.
Is CNS Lupus just part of SLE or is that a separate DX?
I had an especially bad episode last summer where I walked and talked like I was drunk, it was awful I went to the neurologist thinking is was MS or something. I had every test known to man including MRI of the brain which showed plaques and changes in my white matter. I could not get a definitive answer from neurology but when I told my rheumy about it he said changes in white matter is very common in his practice and sometimes there are no answers as to why but the symptoms do mimic MS
Hi. My name is also Eva, and I DO relate.
Tammy Jean, I have had episodes like you describe. I have to laugh through it. Bumping off walls as long as not hurt is like being a human pinball. 1 brother chose for years to turn away, because he called and I sounded drunk, so he figured I was, at 10 in the morning. I wish he had asked what was going on.
Like you, neurologist has no clue what to say or do with me.
Does anyone else get red finger tips and palms of hands? I get it on my soles of my feet as well.
Guess we just have to make the best of things. I also stumble for words, and have something like myoclonus. Best way to describe it is a cross between awake epileptic seizure and running a marathon.
Tammy Jean 51 said:
I had an especially bad episode last summer where I walked and talked like I was drunk, it was awful I went to the neurologist thinking is was MS or something. I had every test known to man including MRI of the brain which showed plaques and changes in my white matter. I could not get a definitive answer from neurology but when I told my rheumy about it he said changes in white matter is very common in his practice and sometimes there are no answers as to why but the symptoms do mimic MS
yes i can, i call them tremors, that is the best way i can describe it, mine do not hurt but it is just scary, my scalp also feels like there is a crawling sensation and my feet hurt really bad on the bottom. i have searing pains shoot thru my head that only last a few seconds. i get those stinging feelings too like a bug bite but no bug. my speech get mumbled and i can be in the middle of a conversation and just go blank, it is so embarrasing, i cant tell you sometimes what i did in a day and i DO NOT take any kind of pain meds altho i do take neurotin but i was doing all this b4 i started the neurotin. i have restless leg, it does not hurt but is very annoying but it is a constant need or feel of my legs jerking it is different than the tremors i described above.
I also have problems with neuropathy, and cervical and spinal stenosis. I take Lyrica and Cymbalta that helps with the pain but I hate the tremors that I have so often. The tremors aren't constant but very aggravating when they do come. Most of the time I am up doing things for half an hour or so then I sit with my feet up or lie down for at least that long before getting up again. My brain fog and bad memory is a family joke but it's not funny when I'm out somewhere and other people don't know my situation. I don't get out very often because of the fatigue. I'm going in a couple of weeks to a GI specialist - hope he can give me some suggestions there. I'm just thankful things aren't worse than they are.
Oh the word finding issues are terrible! I feel like people get so impatient with me, especially on the phone. I’m trying to think of The word and they’re like “hello???”. I feel rushed and frustrated at the same time.
While I don't have neuropathy, I do think I've got that "lupus fog". Does that "fog" or "fuzzy/medicine head" feeling ever hit hard after being out in the sun? I'll be fine, then all of a sudden I can't concentrate. It makes me have to lay down because I feel...well, like I'm in a fog! :) As far as not being able to verbalize sometimes, I attribute it to my anxiety disorder. You know what you want to say, but just can't get it out. I hate that!
Ballerina8876 said:
I get the neuropathy too. It's the strangest feeling. For a long time it was as if my legs couldn't feel much. Lately I've had the sting or water running feeling on my legs, especially my shins. The tripping up on words is part of the "lupus fog" which is very common. Either you forget what you're talking about, forget words or can't access the word you're looking for, or you have memory problems (like that one time I forgot how to spell my name... that was a fun one). For the fog, I just learn to laugh at it. I mean, I've only been spelling my name for how many years now and when someone asks me how to spell it, I completely butcher it. There are also lupus headaches that can occur with the CNS lupus. Hope this helps! Just know you're not alone and you're not crazy!
Lol! Yeah, I had a doctor appt yesterday. Thank God I wrote down which doctor. It was my regular family doctor I have been seeing for years. What I never dreamed was I needed to write down his address… Eventually, I found him.
Ann A. said:
My latest lupus fog funny story - at 1:00am I realized that even though I had an appointment to take my car in for window tint, I didn't remember what time. When I came into the office, I realized that I didn't remember where. I knew that I save all of the information and stored it in the computer, but I couldn't remember the name of the window file.
I had to log on to my service provider web site and find my call logs. I had to use Google to do a "reverse" look up on all of my outgoing calls the day that I think I made the appointment. Around 4am, I found the right place and was able to go to sleep. Made it to the appointment but so tired. Only lupus fog would have someone write in their date book "tint." With no note of time or place.
Lupus fog - thyroid fog - My grandchildren would call it a senior moment. I am just glad that I live an age where call logs exist.
But now I can drive my car without feeling as though I am sitting in a UV box. The back windows were already tinted. Now the windshield and front windows have as much tint as the law in Virginia allows for someone who has a medical need.