So I emailed my doctors yesterday because for about 2-3 weeks I’m having some weird symptoms. I feel tingly, like pins pricking me. Also feel like something is crawling on me but there is nothing there. It’s mostly my scalp, arms and legs. I had a migraine for the past 2 days and I kept wiping my upper lip feeling like there was a hair on it but again there’s nothing there. My rheumy said to be sure to mention it to my neurologist and also when I go for the neuropsychological testing. It’s highly annoying because I’m always scratching and rubbing.
Does anyone else get this?
Have any of you gone through neuropsych testing? It’s like a 4 hour test.
I do have this occasionally and i have noticed when i get in the sun the scalp is the worst. i have the crawling feeling too, and i feel like something bit me and there is nothing there, as a matter of fact i told my rheumy tuesday at my appointment and she said she didnt know. i told my gp and he told me to ask rheumy so now i guess i will now ask my neurologist and she probably wont know either
I get the same feeling sometimes. It usually depends on the meds. Some antibiotics do that. Sometimes if I have been in the sun too long I get that and sometimes it is just the joy of over active nerves due to lupus.
In regards to the neuropsychology test I did that a few months ago. It does take 4 to 5 hours, it is a somewhat difficult school like aptitude test. If you are having some memory issues you will notice some difficulties but don’t get discouraged it is made to take you to your limits. I wish I could see my doctors take the same test. Just relax and do what you can. And when you read the results, don’t get even more depressed like I did. It is just another test to know where you need help. it was the final piece of the puzzle for me to get my final complete diagnosis that I do have CNS lupus with brain damage. Now my doctors know what to do to really help me. Good luck!
I have the pin/tingly feeling in my hands and feet most of the time. I was told it was peripheral neuropathy but no clue how to stop it. I am just trying to deal with it. Not sure this helps, but at least you know you are not alone
I had the same symptoms when I was on Plaqenil. It was determined that I had developed a sensitivity to the medication. It was awful. I hope that this is not the case. I can no longer take Plaquenil.
I am actually being evaluated by my Neuro right now for this plus I have numbness in my legs and feet. It’s not constant except in a few areas in my legs. Had an MRI and waiting on results. I am in gabapentin 900mg per day which helps A LOT! Also I have pernicious anemia (B-12 deficiency). They gave me a B-12 shot and in two days the feelings almost completely went away. So get your B-12 checked too just to be sure. Some times it’s the combination if things. Hope you get relief soon! Hugs-Tina
i had peripheral neuropathy in 2002. i used neurontin, and it helped a lot. that is a somewhat dangerous drug, i think, but I never had any trouble with it. that burning pain kept me up all night before the neurontin. I took it for a few months, and was also getting acupuncture. I was able to wean off it slowly and the neuropathy hasn't returned.
roxy said:
I have the pin/tingly feeling in my hands and feet most of the time. I was told it was peripheral neuropathy but no clue how to stop it. I am just trying to deal with it. Not sure this helps, but at least you know you are not alone :)
Totally sounds like peripheral or small fiber neuropathy. It is a scarier symptom to me because its hard to understand Lupus involving the nervous system. I get all the symptoms you described and trip up on my words
I have that plus sometimes it feels like water is running down the inside of my right leg but only below the knee. I was told years ago that it is the result of fibromyalgia and the nerve endings doing it.
I have a lot of numbness and tingling in my hands and fingers(More in left hand/fingers). It use to happen almost every night and very early a.m. It didn't last very long. But now it is happening more and more and it doesn't go away as quickly as it did before. SO CONFUSED!!!!!! I haven't been to see a neurologist or any other doctor about this lately. I am sick and tired of going to doctors because I feel like all they want to do is prescribe medicine for something that they are not even sure about.
Dealing with the things tha we do deal with our nerves are in a state of !!! Yes I have these problems also!! My psych doctor gives me nerve pills to help with this crawling , ask for something for your nerves ! Our systems ges crazy -I take so many bathes through the day, I think my skin level is being washed away, but the water feel so good…smile…Beverly L.
Hi, you sound like me falling asleep like a normal person is hard for me, and I do go to sleep , when the sun is getting ready to rise again, I find myself waking up within 2-3hours , and staying up once again all day! I don’ t know what is going on but I want some real sleep for hours but it just won’t happen …Beverly L.
Ok. I HAVE to tell my fellow lupus friends about what has happened to me regarding the numbness, tingling, weird feelings. I had been having these issues for a few months and had some internal tremors but you couldn’t really see them but I could feel them. I ended up getting sick and it flared everything! I though for the longest time it was just lupus inflaming my nerves like it does with everything else but NO! I was diagnosed with CNS/PNS Vasculitis on top of the lupus, RA, Sjogrens, etc. I ended up in the hospital for 11days and have been in a nursing home/rehab since June 6th because I lost my ability to walk! So please if it’s not going away or getting worse go see your doctor!!! It hit me so fast and I have had major complications since. I had to learn to walk, bathe take care if my self all over. I will still be in here awhile and I am only 46! It’s so embarrassing! I know it’s rare but vasculitis happens with lupus. Please be careful everyone with these issues! Hugs-Tina
it was the final piece of the puzzle for me to get my final complete diagnosis that I do have CNS lupus with brain damage. Now my doctors know what to do to really help me. Good luck!