Lupus Headaches? Hot All The Time
May 12, 2016
I've recently been diagnosed with possible Lupus and I'm waiting for an appointment with rheumatology. I've had several symptoms over the years including a rash on my hands, arms and chest from sun exposure. I now have daily headaches that completely wipe me out, I'm so tired it's ridiculous, I'm hot all the time, my wrists are so weak and painful I'm scared to lift heavy saucepans/kettle etc and ache all over.
Does this sound like Lupus to you? I don't have any joint swelling but very painful joints and my mood swings are ferocious !
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I've had odd symptoms for many stinging pains, muscle twitching rashes, pancreatitis that is chronic but clear via scans.
Well, almost 3 weeks ago, a large red mark appeared on left breast. I've been going back and forth to doctor as I've wanted to rule out inflammatory breast cancer-it presents with redness etc but no lesions, hard to diagnose. Today when I went back, the doctor felt nodes under my armpit, confirmed during ultrasound, but said they looked benign and small. He said actually it could pop up from autoimmune. He did admit it was odd. It was on the same side as affected breast and not the other. I'm going to get an MRI of my breast as IBC doesn't show on mammogram or ultrasound often.
I've had swollen nodes in the past. I noticed a few times on my jaw line.
I haven't been diagnosed with lupus, tests many years ago were totally clear as were vasculitits tests. But curious if anyone has had nodes on one part of the body pop up. Im praying its not IBC. I'd much rather it be something else. IBC is the most aggressive form of BC and spreads in a matter of weeks, so grasping for other explanations
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For quite a few years now i've been getting headaches in the left side of my head they last for 3 days only and they make my jaw ache and my eye gets pain and my neck is painful they make me really tired as well , can anyone tell me if they know what this is and if they experience this as well?
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i am new to these discussions but I do know how many of you feel. I have mentioned that I was diagnosed with mixed connective disease, lupus, fibromyalgia and who the hell knows what else. I can't work becuause if I sit to long, my legs start falling asleep. If I stand to long, my legs start aching. I feel exhausted all the time like when I wake up in the morning, I could just as easily go back to bed and sleep my entire life away. I wish there was something in a bottle that gave you energy. I miss my old life when I used to work out all the time and had enough energy for 10 people and then one morning I woke up and couldn't bend my leg back, it just wouldn't work so my family doctor sent me to a rheumatoidologist and he is the one that took all my blood from my body, that's what it feels like sometimes, and gave me the great news of having all these diseases but no medication seemed to work. I went to another rheumatoidologist and he put me on Lyrica which helps my upper joints but my legs were in such pain I felt like it was to much to even walk down the hall. Now along with my family doctor, my rheumatologist and my pain doctor, I take Lyrica for joint pain and oxycodone and fentenal patches for pain, especially when my mixed connective disease starts up, it just brings my systemic lupus to life and I get the butterfly rashes mostly on my upper arms which adds to my stress which makes my fibro flare up and gives me pain in my legs and then it just starts over. It seems to be a cycle especially when it's hot. I also start sweating like I was in a sauna all day just on my head and face. People look at me like did you know your sweating like a pig. It's embarrassing but I don't know what to do about that so I put ice on my head at night to keep my head cool so I won't start swearing. I've never had that problem before but only since these diseases came and decided to stop on my little doorstep. I am a true believer that stress can cause all sorts of bad things including diseases. I am just going to try to start yoga but I have to absolutely force myself to do this. I start next week. The worse thing I could have done 12 years ago when I was diagnosed with all this crap was to stop exercising.
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I was wondering if anyone else has this problem. If I stand for a long time or sit in a chair without head support, I end up with a horrible headache. But if I can lie down or sit in a chair with head support so that I'm not having to carry the weight of my head, I don't get headaches. Anyone else?
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Why is it that I can have such a hard time starting a stream when visiting the toilet during the night (after having been asleep for several hours) and have little problem during the daytime when awake and alert? As I see it this has less to do with BPH than with mind/body connections.
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There is a red bump that came up on my butt cheek it looked like a mosquito bite but got a few more around it thought it might of been ringworm bc it looked like a circle I scrubbed the area with bleach, I know that wasn't smart but it went away and let a slight dark spot on the area well the bump comes back from time to time in the same spot what is it? It's a Lil itchy only when I think about it but it's the same as before except it just had a few Little bumps around the middle bump.
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I've been having migraine headaches, pressure headaches, dizziness and nausea. I kept chalking it all up to menopause. Because as most of you know, so many of these symptoms are menopause.
Last Friday, Jan 2nd at around 7:30PM my boyfriend and I were leaving a restaurant, suddenly I started getting shocks in my right leg like my leg was falling asleep, while I was walking to the car. This shocking feeling quickly radiated up my arm and into my head, all on the right side. My boyfriend quickly started toward the hospital. On the way I lost the ability to formulate sentences and words. I would say one sentence and a totally different sentence would come out. I would try to say one word and a totally different word came out. Being a former medic the only word I wanted to relay was "stroke". It felt like someone had tasted my right side. It was the most frightening thing I'd ever experienced and I was awake for the entire ride. After getting to the hospital I was in the ER for about 3 hours. Then sent to Neurology/Stroke ward. For the next few days I had a battery of MRI's, EEG, EKG's, CT Scans, Blood Work, Ultrasounds and a Spinal (Lumbar Punch). Within 6 or so hours I was able to formulate sentences and say words again. I forced myself the entire time. My right side started getting feeling back within a few days. I still have some numbness in my right hand and am experiencing peripheral neuropathy symptoms in my right leg and foot.
The neurologist found a mass in my brain. Thanks be to God that it is benign. I just found out yesterday that I am cancer free. However, they still don't know what the mass is. It could be a tumor or a jelly bean I stuffed in my nose as a child. (joking) But we won't know for a while.Also it might be inoperable too. I will be seeing the Dr on the 13th for an MRI Rx. In a month we'll do the MRI and see what has happened with this mass. Is the edema gone, has it shrunk or grown? Things like that.
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I have recently "not quite" been diagnosed yet with Lupus however I have certain signs not yet enough for an official diagnosis. High ANA is one, pericardial effusion (mild), no inflammation or symptoms yet. Would have never known I had a problem until the Dr. told me I did!! I used to have severe stomach problems for years, cramps, diarrhea after eating a meal. For hours I would suffer. But for the past 4 or so years it has stopped completely and I am wondering if that is when my immune system started to go overactive due to a possible gluten allergy and now turning into an auto immune disease as a result. I am starting a gluten free diet, today is only day 3, i want to suppress and relax my immune system by not giving it so much work to do!! Unconfuse it and calm it down by eating gluten free and healthier. So nutrients can get absorbed better? Add probiotics, making sure to get Vitamin K...D, B12 etc. (I know K is a big one for Lupus) Does anyone have any views on this or have tried diets like this?
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I was first diagnosed 19 years ago. My rashes are becoming more intense. Is it possible or has anyone experienced lupus rash in the groin area? If so, what did you use to lessen the 'fire' feeling.
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I was wondering if anyone had any experience with seizures with their lupus. I had one seizure last see summer before I was diagnosed with RA. I have been told by rheumatologist that I have RA with overlapping lupus symptoms, no positive lupus labs. My question is about the seizure, it was not a grand mal type, no convulsing but I did lose consciousness for almost 5 minutes. Is this a lupus sign. They found NO medical reason at the time for this.
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In the spring of 2015, I noticed that there was a constant ringing in my right ear. Around June, I got in with an ENT, who referred me to an audiologist, who diagnosed me with hearing loss. Progressively, the hearing loss has gotten worse. I am a teen, so to me, this seems quite uncommon.
In the fall of 2015, I noticed a constant ringing in my left ear, as well as my right. I checked with my audiologist, and I had a mild hearing loss in my left ear, and a moderate/major hearing loss in my right.
I have also been having these dizzy spells that I like to call "flares", for the past year or so. During these "flares", I get extreme vertigo, fullness in my ear, and obnoxiously loud ringing in my ear. These attacks normally happen in only one ear at a time.
On top of all of this, I have been dealing with joint pain, fatigue, and muscle pain. My memory has gotten awful, and I like I'm in a brain fog all the time. My mom has lupus, so we are thinking it could be autoimmune.
My rhuematologist, ENT, and general doctor sent me for blood work, and my ANA was positive, along with my heat shock protein. This is all so confusing!
Does anyone advice, suggestions, or personal experiences they'd like to share? I have no idea what to do! I am on 500mg of naproxen and turmeric for my joint pain/inflammation, and a bunch of natural supplements in hopes of feeling a little bit better.
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I need to determine if lupus is the cause of a swallowing and choking problem I'm having. For the past year or so, whenever I get a cold or allergy congestion, I choke on the mucus. It's been getting progressively worse and last week it happened when we were on vacation and my husband had to get an ambulance to take me to the ER because I was choking and wheezing. They gave me 60 mg. of prednisone for a week, which my allergist adjusted to a lower dose, gave me an inhaler, oxygen and a breathing treatment. I'm also taking a heavy duty antibiotic for a sinus infection. The thing is, I've gotten colds and congestion all my life like anybody else, but I don't know of anyone else who chokes on the mucous. Then this morning I started to wonder if lupus and/or Sjogrens is the culprit and making my throat swollen. I'm going to ask my rheumy when I see him in Dec. but in the meantime I live in fear of getting another cold or allergy symptom. I just can't go through that again. It was the most frightening thing that's ever happened to me. I have been resisting an increase in my methotrexate, but if lupus is the problem, I will gladly up my dose. Does this sound familiar to any of you? Has your doctor told you lupus is affecting your throat?
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I'm not Dx but a quick history-for 5 yrs I've had flares of neuropathy-stinging bee sensations that jump around, muscle twitching all over body. Also beau's lines on nail and blood lines under fingernails. At times I get livedo reticularis on my thighs when in hot sun. Also have bouts of mild pancreatitis. Not sure if its related.
Lately I've been getting little sores on the back of my cheeks-usually one or two a week. they don't hurt but I find it odd
Does any if this sound like lupus?
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my daughter started this crazy autoimmune journey about 4 years ago at the age of 16. (at least that's when we realized her years of "weirdness" were actually SOMETHING)After some strange knots and rashes and being hospitalized and put on rocephin and bactrim only to spike a temp of 105 and develop a bright red rash from head to toe she was referred to a rheumatologist. She had a positive ANA (no numbers listed on labs, only positive) dsDNA and SSA. She was started on plaquenil and Mobic then added topamax and maxalt due to severe migraines. The initial diagnosis was undifferentiated. Her rheumy said he was leading more to Lupus because she has the distinct butterfly rash. She stopped taking her meds after she got married and has since had two kids (ages 3 and soon to be 1) She just reestablished herself with a new rheumy. They reran her bloodwork and said her ANA is quite high (didn't elaborate with numbers) and her vitamin D is extremely low. She is now back on plaquenil, Mobic, a prescription to help with the Vitamin D and calcium supplements. She has been to the hospital several times in the past few months with chest pain and high heart rate and sometimes high BP. She always tells them she has undifferentiated connective tissue disease but all they ever do is check her SED rate which is NEVER high..... are there specific things she should ask to be tested or should she always go through her rheumy for any unusual symptoms? The whole chest pain thing leaves this mama feeling uneasy and she is one who gets frustrated and says well I went and obviously I'm fine because they said I was fine.......
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I wonder if biopsy and blood are reliable when someone is already on medication.
my dermatologist is convinced I have lupus, but I am already on medication for rosacea (his Son also dermatologist treated me at first). I take tetracycline and have ivermectin and metronidazole creams. The dermatologist took blood for ana and something else. He also wants to do a skin biopsy but my skin is a lot better since I am on the medicine...except for the extreme redness on cheekbones, nose and chin. (I also have raynaud and some other problems)
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I had a hemorrhoidectomy on 3/12 and I just had my follow up appointment. My doctor didn't even look to see if I was healing properly. He asked about pain and discomfort then offered to write another prescription to get me through even though I told him I stop taking the prescribed pain pills and moved to over the counter Tylenol after a BM. Let me rewind, this was my first case of external hemorrhoids which occurred during a LUPUS flare. On top of me having LUPUS, my first case of hemorrhoids were thrombus. Anyway back to the concern at hand. I still see what appears to me as two hemorrhoids, one red, and constantly bleeding and the other itching like crazy. I'm not sure what I can do for the discomfort due to one of the hemorrhoids appearing to be open, I'm afraid to put any type of medication on them due to the fear of pain returning. This surgery was my first surgery, I've never had kids, so the pain I experience during these last three weeks had me on the verge go asking God to take me now. I'm not sure if I should be concerned and schedule another appointment with the doctor and request him to take a look or if this is the normal healing process.
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For nearly three months I have been dealing with some serious chest pain, particularly when I try and take deep breathes, lay down, or bend or lean forward. At times, the pain is unbearable.
My family doc did some x-rays and sent me to a pulmonologist (assuming it was pleurisy?). After meeting with him he ordered some blood work and a cat scan. After getting the results he told me it wasn't pleurisy (and that that word was actually a "junk door" word that people use to describe lung stuff?). What is weird is that he told me the cat scan revealed that I had some fluid build up in both of my lungs? That being said, the cat scan also suggested that I had fluid around my heart, so he ordered an echocardiogram (sp?), which I did.
All that to say this: the doc is convinced I don't have pleurisy. He thought I had an autoimmune disease (lupus?). Thus, he ordered tons of blood work. I just left his office - all the blood work came back negative and the echocardiogram only found a small "trace" of fluid around my heart. So at this point I am thinking: its gotta be pleurisy, right? Wrong.
He just ordered an EKG. Now he thinks I have something called pericarditis (sp?). So here is my question/frustration: its been three months and we still don't know what I have. I am in intense pain to boot! Are there others out there who have had breathing pain for this long, and if so, what have you been diagnosed with and how have you been treated? Could this really be my heart?
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I recently had a positive dsDNA test but have not been referred to a rheumatologist yet. I am kind of reading up on lupus and just considering a few things that I never really thought much of before.
Do the mouth sores always hurt? I have at least one white spot (bump/lump) on the inside of my bottom lip, but it doesn't hurt. I have heard that the mouth sores are "ulcers", which sound painful. My dentist has seen this spot but never mentioned lupus, so maybe it is just "one of those benign things"?
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I wonder if anyone else has had numbness and tingling in extremities? My GP had thought that the issues in my right hand were due to carpal tunnel and related to my swollen elbows. I had thought the numb toes on my right foot I had in winter was due to raynauds. But it's summer now, my elbows are much better, but I'm waking every night from numbness and tingling in left and right hands and right toes and heel.
I don't see this listed as a side effect of plaquenil or as a symptom of lupus. It's not a huge deal, but does result in less sleep. Does anyone else have this or know the cause?
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I have read that estrogen can cause Lupus to flare up. I need to go on birth control because when I get my period my joints swell and my gastro issues get worse. Anyone have any suggestions?
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