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Old 09-11-2008, 06:04 PM   #1
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Exclamation Help Please-I'm Scared! Does Anyone Have These Symptoms With Their Lupus?

Does anyone have these symptoms? Please answer "no" if you don't, please!!!! I'm this way every day now and I'm afraid something is terribly wrong! They don't seem lupus related, but I don't know. Does anyone else with lupus have this?

It's like my whole neurological system has gone haywire...It hurts when someone touches me. It's like my skin hurts and feels hot all over, but I chill and am cold and need to go to bed and cover up to get warm. When I hear something loud, it's not just loud, it's like it sends a shocking sensation throughout my whole body and it hurts! I can't see straight and have trouble focusing because I am tingly all over and buzzy feeling. Sound familiar to anyone?

I'm very fainty and weak feeling! I have to pray for God to give me strength just to be able to get groceries! That I not pass out in the store or parking lot.

My back cracks all the time, even if I take a deep breath in, then I get these tiny cracks down my spine. Even sitting for five minutes at the computer, my neck muscles cramp up and burn. When I lay flat on the bed, it brings tears to my eyes because my low back is in such pain to lay down and stretch out flat. I don't know if the back thing is related or not. I am 37 for crying out loud - not 87!

Is this CRAZY or what??? I am taking 200 milligrams of Plaquenil a day and up to four 200 milligram tabs of Advil a day. Please answer because I don't know what to do!

Last edited by Lizzy73; 09-12-2008 at 05:41 PM. Reason: I need an answer from somebody with lupus

 
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Old 09-13-2008, 09:06 AM   #2
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Re: Does anyone have these symptoms?

Hi again, Lizzy

You may remember that i've replied to some of your other posts and you mentioned I seem to have many similar symptoms as you.

Of course I cannot diagnose you or anything, but, one symptom you describe sounds like allodynia. That's the term used for pain caused by touch or pain caused by things that are not normally painful. I have had this happen to me from a severe episode of sciatica. First most of my left foot was completely numb; after some feeling started coming back, my foot would sometimes get icy cold; and I would also get allodynia in my foot. I could not have that foot touch my sheets in bed; it was horrific wearing socks & shoes; and I also could not lean my right leg/foot on top of the left. It did take several months and a nerve block...but all of those symptoms did finally subside. Except that now I am getting some pain along my left sciatic nerve on & off, though it is usually dull pain. However, as you might know, I also have it in my left leg as well on & off. I also get sporadic nerve pains on the insides and outsides of both ankles; the tops of both of my feet. Sometimes my big right toe gets stuck and won't bend; I'm also getting nerve pains & symptoms in the fronts of my thighs, my fingers, hands, and arms; sometimes in my neck; I also get sudden quick shocks all over the place, randomly. It feels like a tiny hot poker is poking me in random parts of my body; I also get buzzing sensations ( it feels like a TENS unit is on me) all over - on my head, my neck, my legs, and in areas of my back. Anddd I have woken up (on my back) with a part of my right face completely numb. But much of this is not explained by my lower spine problems as nerve issues from the low back go the side and down, not up.

Some people I know think I probably have nerve compression in my cervical spine as well; I don't know, I've never had my cervical spine checked out and can't afford now.

I also get severe cramps & spasms all over the place, but I don't really feel weak or faint; well, except for a few migraine attacks. I can't remember if I've asked you this already..... Have you told your Doctor about all these symptoms? And what do they think?

 
Old 09-13-2008, 09:49 AM   #3
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Re: Does anyone have these symptoms?

Lizzy, I had a lot of neuro-like tingling (flitting sensations, like something running underneath the skin surface) prior to Dx & Plaquenil, especially in my arms---interesting because upper arms were where the bulk of my SCLE targetlike, nonscarring rashes appeared.

Also, my B-12 & Folate levels were very low; for these one lab printout had a footnote citing "unexplained neuropsychiatric manifestations" for such low levels.

I've had hot shivery burning along long bones of arms & legs since I was 13, meaning for decades---a form of arthritis, I assume.

Hope this helps some. Best wishes, from Vee

Last edited by VeeJ; 09-13-2008 at 09:51 AM. Reason: added phrase

 
Old 09-13-2008, 02:47 PM   #4
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Re: Does anyone have these symptoms?

Thanks to all for your reply! I have been diagnosed with lupus and scleroderma for a year now...I was started on 200 milligrams of Plaquenil which made me feel a lot better. However starting a month ago I started getting sick again about one day out of the week. It is progressing now to every day, starting in the afternoon. That's why my last thread was "does lupus progress?" - also "Plaquenil not working anymore."

I meet with my Rheumy Oct. 6th, and am trying to hold out until then....I'm not sure if what is happening is lupus or something different. I also am breaking out in rashes on my arms ( I had the lupus rash there when I was exposed to the sun last year) I stay out of the sun now. I am itchy on my arms even though they are covered, and have small bumps that look like mosquito bites all over. They scab up and go away and leave pink scars all over.

Thank you again, Baybreeze and VeeJ for your opinion. I have since researched allodynia and am trying to determine what may be going on, as sometimes doctors may overlook things and I would like to bring up ideas that maybe they haven't thought of....It's like you have to take charge of your health and investigate yourself or they will just shrug their shoulders and say "sorry, don't know what to tell you!" Or they may miss something, or not think of something.

Thank you again to all who have replied...If you think of something else, let me know. I am so sick of being sick! I also get frustrated with people that tell me "you don't look sick". What am I supposed to do, not shower and put on makeup because I need to look on the outside how I feel on the inside??

Also - I can not have any alcohol - not that I was a drinker anyway. But it used to be nice to have a beer at the end of a long summer day...Now I get excrutiating pains in my abdomen that will disappear after about two hours after a drink. It is so bad that I have to crawl into bed and curl up in a ball until the pain goes away. Has anyone had this??? I don't even want to think about having a drink again after that pain!

Last edited by Lizzy73; 09-13-2008 at 06:54 PM.

 
Old 09-30-2008, 02:57 PM   #5
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Re: Help Please-I'm Scared! Does Anyone Have These Symptoms With Their Lupus?

Hi Lizzy,

I ust joined and read your note/concern and I have to tell you that it may possibly be LUPUS. I just came out of the hospital on September 10th, from being admitted back on August 21st.

I had been feeling with much pain, redness on my skin for a while but I ignored it. Took the pain, kept drinking Aleve for the joint pains and thought I would just get better that I was just working too much and had hurt myself physically by working hard and that my body was just feeling the outcome of it. My doctor sent me to a Rheumatologist and it was hard to get an appointment so I missed the first and took me long enouhg to makwe the second until I finally went four months later (my fault). As soon as he heard what I had to say and looked at my skin he mentioned the possibility of LUPUS. He explained what it was, he saw me a little Red but mind you everyone saw me vere pale.

They drew blood, took my urine and called a week later as it states, at that point it was on a Tuesday August 19th left a message. They called me back on that Wednesday 20th to tell me that the blood never left to the lab so I had to take new blood work. I told the girl, listen everyone tells me I look pale, I am very weak, dizzy, I am in pain, do not have much strength, I really do not feel well. The girl at the doctors office told me on quote "Maybe you are coming down with the Flu", "But I will send you the new Insurance Lab form so you can get the blood work done again right away". She of course was no one to diagnose me, she could have at least givne me the DOC but she did not. I did not feel well to argue so I hung up. I was at work, so at 5:30pm I went home and I almost ad an accident on the Skyway because for a few seconds I blacked out completely. Thank God I heard the oher vehicles horn and I was able to manage my car and PRAYED to the Lord to guide me and help me get home safe.

So I did, I managed to take a shower, my Dad noticed I was not well and went to bed, he tried giving me a Fruit Shake he made for me so I can maybe feel better but I really did not want anything, I was feeling so sick.

The following morning, Thursday 21st, my Dad called my sister first thing to please come and take me to the hospital because I was not well. So she did, and I had a very BAD ANEMIA, I went into the hospital with my Moglobine at 3.5 out of a normal 11.7. I was in bad shape, I could have went into an easy Cardio Arrest too because I had Heavy Breathing, the could stand the light, the joint pains, I was very weak, I had fever, chills, I wanted to sleep but could not, I was very very tired though, I could have died.

I am sorry for the long story but I want you to understand to please DO NOT take any chances. Do the right thing, go to your DOC if nothing comes out in the blood which may not, try to stay out of the direct light and maybe sun, eat right, not much salt, eat healthy, just be careful.

I am on Steroyds for now, Vitamins, Folic Acid, and the Steroyds affected my sugar so I am now a full blown Diabetic, so I have more to worry about. I have Lupus and Diabetes, I can not be under the Sun at ALL or under direct light.

So please be very careful and do not take any chances. I was in ICU for 15 Days and 7 Days on a normal floor/room. It was very scary to realize later on that I could have easily not make it, howerver the Lord carried me out of it and I am still here.

So please do not go crazy, however do not ignore what you feel and take care of yourself. God Bless.

Ana




Quote:
Originally Posted by Lizzy73 View Post
Does anyone have these symptoms? Please answer "no" if you don't, please!!!! I'm this way every day now and I'm afraid something is terribly wrong! They don't seem lupus related, but I don't know. Does anyone else with lupus have this?

It's like my whole neurological system has gone haywire...It hurts when someone touches me. It's like my skin hurts and feels hot all over, but I chill and am cold and need to go to bed and cover up to get warm. When I hear something loud, it's not just loud, it's like it sends a shocking sensation throughout my whole body and it hurts! I can't see straight and have trouble focusing because I am tingly all over and buzzy feeling. Sound familiar to anyone?

I'm very fainty and weak feeling! I have to pray for God to give me strength just to be able to get groceries! That I not pass out in the store or parking lot.

My back cracks all the time, even if I take a deep breath in, then I get these tiny cracks down my spine. Even sitting for five minutes at the computer, my neck muscles cramp up and burn. When I lay flat on the bed, it brings tears to my eyes because my low back is in such pain to lay down and stretch out flat. I don't know if the back thing is related or not. I am 37 for crying out loud - not 87!

Is this CRAZY or what??? I am taking 200 milligrams of Plaquenil a day and up to four 200 milligram tabs of Advil a day. Please answer because I don't know what to do!

 
Old 09-30-2008, 06:39 PM   #6
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Re: Help Please-I'm Scared! Does Anyone Have These Symptoms With Their Lupus?

Vee
On my regular blood work for my rheumy my PCP wanted B12 check. He called a couple days later and my B12 was very low. Had my first shot today, they want one a week for 4 weeks then one a month. I have feelt so terrible for over a year, better after 3 months of Prednisone, but still weak, muscle spasms, and burning mouth and lips. Also headache and tingling everywhere. Did you feel better after the B12 shots? I am hoping so much it at least stops the burning in my mouth. Sometimes walking from the garage to the house I have trouble getting up the steps, I am so weak.

 
Old 10-01-2008, 07:07 AM   #7
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Re: Does anyone have these symptoms?

Thank you to all who have replied...I'm not sure what is going on, but I am not better. Yesterday I was nauseated and had to lay down to settle my stomach. I am so dizzy all the time that I'm afraid to drive. My vision is just too weird to describe. I can't focus and everything seems shaky and flashy. My arms burn and itch all over and are red. My whole body itches and I get red blotches all over. I have tiny red spots on one of my legs. I can't wait to go to the Rheumy next Thursday. My hair is falling out in the back of my head.
Baybreeze - since we are similar in symptoms has anyone checked you for CNS lupus or central nervous system lupus? I am suspicous that it may be what we have. I have had my blood sugar checked for diabetes and that was negative last year. It almost feels like very low blood sugar and I am going to pass out any moment, but even after I eat or drink I am still the same. I think that may be what it is. I also get the worst stiff neck ever and my muscles cramp up in my neck.

 
Old 10-02-2008, 04:50 PM   #8
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Re: Does anyone have these symptoms?

Lizzy,
Has anyone talked to you about fibromyalgia? It is an all over body pain but it effects your neck the most. The cold, and the skin hurting are symptoms. At times your skin feels like it is burning. You flinch when someone tries to touch you. Hugs...unbearable. I thought i was loseing my mind and went to the doctor (rheum) he diagnosed me with FM. I had never even heard of it. I take Lyrica for it. I have Lupus and FM so its hard sometimes to tell which is which but the neck pain and symptoms you described sound alot like FM. You might want to research and talk to your doctor.

 
Old 10-03-2008, 09:52 PM   #9
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Re: Help Please-I'm Scared! Does Anyone Have These Symptoms With Their Lupus?

hAVE YOU HAD ANY DENTAL WORK DONE IN THE PAST FEW YEARS WHERE THAT GAVE YOU THOSE SO CALLED "silver" FILLINGS?
The burning in your mouth sounds like a yeast problem. Adults can get this in the mouth from over abundance of it in the system.
<removed>

Last edited by mod-anon; 10-03-2008 at 11:01 PM. Reason: do not instruct members to do outside searches

 
Old 10-05-2008, 06:53 AM   #10
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Re: Does anyone have these symptoms?

Thank you to all that answered! My symptoms are progressing now with vomiting. My stomach is so nauseated and I can't keep any food down. I know something is really wrong and I believe it is probably CNS lupus... I couldn't sleep last night - my head hurts and everytime I fall asleep I woke up several times feeling like someone just sent an electric shock through my body. I pray that my rheumy will give me a quick diagnosis on Thursday so I can get help...Thanks again any other advice is welcome.

 
Old 10-08-2008, 05:47 PM   #11
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Re: Help Please-I'm Scared! Does Anyone Have These Symptoms With Their Lupus?

hi lizzy,
i had those problems before i was diagnosed with sle...after starting on 5 mg prednisone daily along with 200 mg plaquenil 2x daily and 500 mg naproxen 3x daily. i later was able to lower the naproxen to 1 daily to no pain meds at all. the plaquenil too a few months to really work, but once it did, i have been much better since. i also stopped drinking carbonated sodas. i noticed they caused joint and bone pain. i made myself get lots of rest and lowered my stress levels. i take the vitamin b12 shots and they help me compared to what my nervous system was doing before the shots. all your syptoms sounds like when i am in a lupus flare...take care, get rest and eat light and healthy.

i hope you feel better soon

 
Old 10-17-2008, 10:34 AM   #12
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Re: Does anyone have these symptoms?

Quote:
Originally Posted by Lizzy73 View Post
Baybreeze - since we are similar in symptoms has anyone checked you for CNS lupus or central nervous system lupus? I am suspicous that it may be what we have. I I also get the worst stiff neck ever and my muscles cramp up in my neck.

Hi Lizzy,

Sorry I hadn't gotten back to you sooner! I do have many of the same symptoms, but my Rheum has never mentioned CNS lupus to me at all. As a matter of fact, i just saw him a couple weeks ago for something else, and I said I cannot understand why I get all these nerve pains and paresthesias, and severe muscle cramps and spasms all over (not just in my low back)...and his answer was : it's probably the fibromyalgia! I personally don't think that is what it is. I know I have low spine problems, confirmed by MRI, such as scar tissue build-up, bulging discs, and facet joint hypertrophy. Some of this might explain my lower body nerve pain symptoms, but it does not explain it in my upper body. Though I do get flares of severe neck pains and in my Rheum's notes, he has me diagnosed with cervical spondylosis (arthritis). So I wonder if my neck is just getting worse and causing my upper body problems. I don't know. I've been taking Lyrica since Feb. My Rheum started me on it, but my PM took over & increased my doseage. It has been helping my nerve symptoms alot. But I have never had my neck checked out by MRI to see what's going on in there. But the Lyrica is not helping my muscle cramps & spams at all....and my Rheum thinks my muscle issues are Fibro related. But i know Lyrica has been approved for Fibro treatment, but it's not helping my muscles. Plus, I do not have pain or tenderness when pressing into my skin anywhere, which is typical of Fibro. My spine doc thinks scar tissue is playing a part, plus I now having worsened hip OA.

I do want to tell you that, before I had spine surgery, I also could not lay flat at all. I had to lay in the fetal position for more comfort. I also could not stand up straight. The pain in my back and legs was unbearable if I did try to do these things. Standing and walking were also unbearable. And my symptoms would worsen when trying.

I know there could many things that cause all these symptoms, but.......since you mention the back pain & symptoms, have you had your spine MRI'd at all? If I were you, I would, as spine problems could be a possibility......

 
Old 10-20-2008, 06:51 AM   #13
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Re: Does anyone have these symptoms?

Update since Rheumatologist visit - I wanted to go on plaquenil 200 milligrams twice a day, ( am currently taking 200 milligrams once a day) but he instead wants to put me on clonazepam which is an anti convulsant seizure type medication (weird, huh?) Has anyone had this before? I go in to see him again at the end of the month. Has anyone been on this medication for lupus? I guess it's supposed to help me with sleep. I have been taking ambien 10 milligrams twice a night for insomnia. Does anyone else with lupus have trouble sleeping?

Last edited by Lizzy73; 10-20-2008 at 06:56 AM.

 
Old 10-20-2008, 07:16 AM   #14
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Re: Does anyone have these symptoms?

Some people are misdiagnosed with Lupus when they actually have lymes disease.

 
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