my toes and other parts of my body are tingling really bad and i am getting this burning as if someone had a sunburn my hands,palms feet under the soles of my feet ,my arms,and the sides of my face when i put my hands in warm water they are so sensitive and it feels hot and unconfortable along with this i am getting the usual lupus pain i get knees hands arms back all over at night it starts up bad this morning i was so scared because with it came very clouded brain i am also having nausea,fatique i am flaring so intensly and i am trying to keep it togather because i had a panic attack because i am soo worried and live alone and no one around me would understand even if i tryed could you imagine telling someone all of this and i know its the lupus but more intensed then i ever experienced and hard to stay focus on the computer has anyone had these symptoms or know what this could be i am really trying to keep it togather i have noticed with some of my last flares i was experiencing not enough oxgen or to much inflammation with my brain and when the doc put the prednesone at a high dose for awhile it cleared and i felt a big difference and i have felt that pricky tingling numb frezzing stuff before but here and there not as intense and ongoing as now its so hard to tell the doc everything your feeling also but not its there and easy to tell but it is awful has anyone experienced this?thank you
made a mistake at the end where it says everything your feeling also but now its there(i have the word not it should be now)sorry!
Rhonda, it sounds like neuropathy. Nerves can do strange things. Try to copy and maybe print out your post here and tell by phone or give to your doctor. If you are in the states, I would call first thing in the morning, as Thursday is Independence day. hugs
Have you already checked your blood sugar lately? I have tingling and electric shock like pain from the side of my face, both arms, fingers, legs, feet and toes. I was one point away from Diabetes II and now on Januvia. The tingling in my toe is less now. I am currently on Cymbalta for the nerve pain and depression and still having breakthrough pain. My 1st neurologist had me do nerve conduction tests and only found carpal tunnel. I am going to 2nd neurologist to see if he came come up with a better diagnosis than "idopathic" which means an unknown cause. So I would recommend two things. 1. See your primary doctor and ask for an A1C test and go to a neurologist for tests so that you can get treatment.
Hello Ronda,
I have had burning fingers and toes which radiates towards my legs and fingers for the last four years. It has worsened as time moves on. Fortunately for me I was diagnosed with Erythromelalgia last week after lots of work on my part. Apparently it goes hand and hand with Raynauds.( pardon the pun ) I also suffer from Lupus. I am going for tests regarding the Erythromelalgia on Wednesday. Its just a thought that it could possibly be what your symptoms are.It is not know very well ,even by doctors.Take Care x
Please let us know the kinds of tests that you had and were they done by a neurologist or by someone else. Thank you!
Loopy-loo said:
Hello Ronda,
I have had burning fingers and toes which radiates towards my legs and fingers for the last four years. It has worsened as time moves on. Fortunately for me I was diagnosed with Erythromelalgia last week after lots of work on my part. Apparently it goes hand and hand with Raynauds.( pardon the pun ) I also suffer from Lupus. I am going for tests regarding the Erythromelalgia on Wednesday. Its just a thought that it could possibly be what your symptoms are.It is not know very well ,even by doctors.Take Care x
Hi. I haven't had the tests yet. I go on Wednesday. I am having a Thermal Threshold test and also a Doppler Scan. I have also having another two test at a later date, not sure what they are. I am also going to have Iloprost Infusion as was told this might help. I was diagnosed by a Rheumatoligist, not by my Lupus Consultant. I am in the U.K Good Luck
Carolee888 said:
Please let us know the kinds of tests that you had and were they done by a neurologist or by someone else. Thank you!
Loopy-loo said:Hello Ronda,
I have had burning fingers and toes which radiates towards my legs and fingers for the last four years. It has worsened as time moves on. Fortunately for me I was diagnosed with Erythromelalgia last week after lots of work on my part. Apparently it goes hand and hand with Raynauds.( pardon the pun ) I also suffer from Lupus. I am going for tests regarding the Erythromelalgia on Wednesday. Its just a thought that it could possibly be what your symptoms are.It is not know very well ,even by doctors.Take Care x
Carolee, don't you love that word idiopathic? It makes me laugh, because when the specialists use it, my brain turns it into pathetic idiot couldn't figure me out either. Laughter is good medicine.
Carolee888 said:
Have you already checked your blood sugar lately? I have tingling and electric shock like pain from the side of my face, both arms, fingers, legs, feet and toes. I was one point away from Diabetes II and now on Januvia. The tingling in my toe is less now. I am currently on Cymbalta for the nerve pain and depression and still having breakthrough pain. My 1st neurologist had me do nerve conduction tests and only found carpal tunnel. I am going to 2nd neurologist to see if he came come up with a better diagnosis than "idopathic" which means an unknown cause. So I would recommend two things. 1. See your primary doctor and ask for an A1C test and go to a neurologist for tests so that you can get treatment.
Rhonda, how are you holding up today, Monday? I'm hoping better, and maybe you have talked to your doctor's office? hugs
I was just searching for causes of idiopathic neuropathy! I have asked my doctor for a short fiber test and he refused. Anyway 50% of idiopathic neuropathy is short fiber! So those odds are good enough for me to request a test. I am hoping that my new neurologist is willing to let me have the test.
ohsoperplexed said:
Carolee, don't you love that word idiopathic? It makes me laugh, because when the specialists use it, my brain turns it into pathetic idiot couldn't figure me out either. Laughter is good medicine.
Carolee888 said:Have you already checked your blood sugar lately? I have tingling and electric shock like pain from the side of my face, both arms, fingers, legs, feet and toes. I was one point away from Diabetes II and now on Januvia. The tingling in my toe is less now. I am currently on Cymbalta for the nerve pain and depression and still having breakthrough pain. My 1st neurologist had me do nerve conduction tests and only found carpal tunnel. I am going to 2nd neurologist to see if he came come up with a better diagnosis than "idopathic" which means an unknown cause. So I would recommend two things. 1. See your primary doctor and ask for an A1C test and go to a neurologist for tests so that you can get treatment.
hi ohsoperplexed this is been so strange and very scary i have been with a friend i mine he let me rest at his house and to keep a eye on me i have gotten these sever panic attacks where i cannot do anything i cannot stay focus my brain is not working propertly i feel very far away along with the nerve pain and burning and nausea off and on and alot of symtoms that are to overwhelming my blood pressure is 158over101 i called the doc and that was different then other times with not being able to focuse or just plain remember something stupid i had mild symptoms of some of these things for awhile but not this extrem i am thinking i may not be getting enough oxgen to my brain or the inflammation is really high i have sle lupus so anyway i called the doc and they emailed him of course when its emergency they are not there when u need them anywat he had this other doc call me to get the info my doc is also professor of medcine so then i spoke on the phone and he said its more complicated then he thought so they have me seeing my doc at another location because he is not where i always see him tuesday morning i have to get through the night and the morning is bad whatever is acting up from lupus is effecting just getting dress it may sound stupid but i am having a problem just trying to figure out what to wear so what ever it is is effecting my thinking really bad when it invoves your brain it gets really scary and i am depressed kinda with it i hope i made sense this was hard for me right now to explain because it invoves so many different thing this time but i have had inflammation with my brain i tryed to take the prednesone because it really cleared it up before two times and i was back to normal but i am very anxios pressure really high and i cannot hav any prednesone till i see the doc tomorrow thank you so much for thinking about me it means so much to me thats why i wanted to tell you what was going on at this point and its hard when your alone and you start getting different flare then what you are use too well i don't know whats going on but i will tell you as soon as i know i wish we all lived closer huggs ohsoperplexed
ohsoperplexed said:
Rhonda, how are you holding up today, Monday? I'm hoping better, and maybe you have talked to your doctor's office? hugs
thanks carolee888 i was refered to see the nuro and never did i have so many other illness that it is so hard to address eac one it is really overwhelming but i am going to do what they tell me because this really scares me and the a1c test i will bring up tomorrow/today to my rumey i don't know what that is i will try to find out before i see him if not i will just ask him thank you so much for getting back to me
Carolee888 said:
Have you already checked your blood sugar lately? I have tingling and electric shock like pain from the side of my face, both arms, fingers, legs, feet and toes. I was one point away from Diabetes II and now on Januvia. The tingling in my toe is less now. I am currently on Cymbalta for the nerve pain and depression and still having breakthrough pain. My 1st neurologist had me do nerve conduction tests and only found carpal tunnel. I am going to 2nd neurologist to see if he came come up with a better diagnosis than "idopathic" which means an unknown cause. So I would recommend two things. 1. See your primary doctor and ask for an A1C test and go to a neurologist for tests so that you can get treatment.
thank you loopy-loo i will get back to everyone as soon as i can hopefully i can sleep now before i hav to get up and go through probaly more test like each time but i have to find out since things are changing hope to get some answers and most of all make it better so i can feel better to talk to everyone thanks i will be thinking about all of you god be with us all
Loopy-loo said:
Hello Ronda,
I have had burning fingers and toes which radiates towards my legs and fingers for the last four years. It has worsened as time moves on. Fortunately for me I was diagnosed with Erythromelalgia last week after lots of work on my part. Apparently it goes hand and hand with Raynauds.( pardon the pun ) I also suffer from Lupus. I am going for tests regarding the Erythromelalgia on Wednesday. Its just a thought that it could possibly be what your symptoms are.It is not know very well ,even by doctors.Take Care x
Rhonda, it sounds like fibromyalgia and Raynaud’s syndrome symptoms. I have found Lyrica to be the one med that has made any difference in my symptoms of both. I did not like it at first as it made me feel a bit out of it…but when I went off it after a few weeks I really noticed the symptoms got worse again. I am in northwestern NJ, where is Gloucester City? I do hope your doc can follow through on your symptoms, take one at a time… It is so overwhelming when we think of all the maladies that SLE/lupus can bring onto us. It is a constant treadmill that goes way too fast for us sometimes so we have to slow down the speed…just don’t jump off the treadmill and quit. We are here for each other… I hope today will be a good day for you…
Hugs & Peace ~Maré
You are so welcome. I have so many diseases too!
rhonda said:
thanks carolee888 i was refered to see the nuro and never did i have so many other illness that it is so hard to address eac one it is really overwhelming but i am going to do what they tell me because this really scares me and the a1c test i will bring up tomorrow/today to my rumey i don't know what that is i will try to find out before i see him if not i will just ask him thank you so much for getting back to me
Carolee888 said:Have you already checked your blood sugar lately? I have tingling and electric shock like pain from the side of my face, both arms, fingers, legs, feet and toes. I was one point away from Diabetes II and now on Januvia. The tingling in my toe is less now. I am currently on Cymbalta for the nerve pain and depression and still having breakthrough pain. My 1st neurologist had me do nerve conduction tests and only found carpal tunnel. I am going to 2nd neurologist to see if he came come up with a better diagnosis than "idopathic" which means an unknown cause. So I would recommend two things. 1. See your primary doctor and ask for an A1C test and go to a neurologist for tests so that you can get treatment.