Hi! I've been looking for a forum like this since january and I'm so glad to have finally found it. Here is the skinny of my story followed by a question...If you want to skip the story, no problem, but please answer the question...I need your help!
I was diagnosed with Fibromyalgia years ago and though my ANA was positive, Lupus was ruled out. Well, I went to a walk in clinic after work one night (at the insistence of my husband) because of some pain I was having in my left side. They took a quicky platelet count and recommended I go the emergency room if the pain got worse, but gave me pain killers and sent me home. Two days later I went to them emergency room and my platelet count was about 20,000 (normal is ~150-350 K). So I've been to a ton of doctors since and my rheumatologist said she is uncomfortable diagnosing me because I am a "symptom short" though she continually refers to it as Lupus. I've been on prednisone since October and Plaquenil and Ultram, but until now (and as you'll see from my question even now) I didn't think I had had a flare.
Last week I couldn't leave my house. Even as I write this I'm not at full strength or even my full energy level as it normally is (relatively low). I had extensive pain, exhaustion, depression, mood swings, headache and generally could do nothing. So it felt differnt than my typical Fibromyalgia flare, but I guess I don't really know the symptoms of a Lupus flare (I don't have the greatest rheumatologist)
So my question is this:
What are the symptoms of your Lupus flare and how do they differ from a fribromyalgia flare (if you know what that feels like or if they differ at all.)
Thanks for your help. We have a lupus support group in my area, but it only meets once a month in the middle of the day, so I really am incredibly happy to have found you all! :lol:
as there are members here that are more qualified to help you, ill let them answer your questions, but here are some links that might help you differeniate between the two
also try the sticky at the top of lauries lounge on this forum board, lots of answers there
Fair Oaks California
Welcome to the group
I don't know from personal experience what a fibro flare would be like. My friend has it, and suffers mainly from pain in specific areas. When I flare up, I have digestive problems, skin problems, clotting problems... I get very "blurry" in my thinking, my vision also gets blurred and my ringing in my ears gets super loud. I am very succeptible to infections anyway (and don't heal from them, either) and this becomes more so during a flare... Let me think... (I tend to brain dump my flare details... well, really any details... haha) I get really tired, my labile blood pressure gets worse, my heart rhythms are really bad (lots of pvc's, bigiminy, trigeminy, racing rate--up to and over 250bpm)... I lose weight and am very tired... and of course, the pain--my hips lock up, my fingers swell up... my knees hurt, feet, spine, head... everywhere. my lymph nodes have been swollen since September, but they usually swell up during a flare, too. And a low grade fever... but again, I've had this since September, too... but usually my temp is about 97.4, and during a flare it's about 99.
I think that everyone's flares show up differently. That's probably the most complete list I've ever been able to put together Maybe I should show this to my doc.
I'm curious to see others' answers to this, too.
Welcome to the board...I am sorry to hear about your troubles. I have had both fibromyalgia flares and lupus flares, for me the main difference is that the fibro flares are very localized in my body, I feel the pain horribly in certain spots. During my lupus flares I feel pains in my chest, complete brain fog, I run fevers (low-grade ones), my muscles and joints almost lock up making movement of any kind most difficult. I have horrible migranes and neuropathy during my flares too. I hope this helps. I hope things get better! Good luck!
This all sounds about right. I'm interested to hear more responses, but my fibromyalgia flares are localized and I what i've been having is a little more excruciating and more generalized than those. I've also been having horrific headaches and a low grade fever. I really can't thank you guys enough for responding.
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I have Fibromyalgia too, but my doctors can't seem to decide whether I have S.L.E. or Behcet's Disease or something else! :x I am certainly not symptom short (w.r.t. S.L.E., I have a malar rash, ulcers everywhere - oral, nasal, genital, anal, internal -, Epilepsy, severe headaches and migraines, arthralgia, Neuropathy, dizziness, photosensitivity, Pleurisy, fatigue, fever, Raynaud's Phenomenon, swollen lymph nodes, I.B.S., etc.), but I have a negative A.N.A. They just know that I definitely have Fibromyalgia, Sjogren's Syndrome, Cutaneous (skin) Lupus and some type of systemic autoimmune disease.
The Lupus Foundation of America provides the following list as signs and symptoms of a Lupus Flare - you may have one or more of these signs and symptoms and they may repeat themselves. When a lupus flare occurs, you will usually notice a return of or worsening of some of the symptoms you've experienced previously, but sometimes you will notice new symptoms:
Persistent fatigue out of proportion with what you would usually expect
Aching all over
Fever, which may be slight to high (you can check your temperature yourself)
Persistent loss of appetite
Involuntary weight loss
Increasing hair loss
Recurring nose bleeds
Sore on the roof of the mouth, which burns with spicy foods
Unexplained skin rash anywhere on the body
Sores on the skin
Stiffness of the joints when waking up in the morning
Chest pain which increases with breathing
Shortness of breath
Coughing up blood
Persistent unusual headache
Nausea or vomiting
Recurring or persistent abdominal pain
Persistent, increasing swelling of the feet and legsPuffy eyelids
Blood in the urine
The pain of FM is often worsened by what is going on internally and by external factors resulting in what we FMers refer to as a flare.The symptoms of a Fibromyalgia flare may include:
inability to sleep
FM and LUPUS: Sensitivity to cold, damp, humidity, heat, approaching storms (barometric pressure changes), temperature extremes, and change of seasons can cause or precipitate symptoms of a flare. Also Stress, both physical and emotional.
As you can see, some of these symptoms of FM and Lupus flares overlap. There are many (myself included) Lupus sufferers who also suffer from Fibromyalgia. I generally do not even try to distinguish which disease is causing my flare or which disease is causing my symptoms, especially since symptoms of both are so similar and treatment for both are essentially the same. I recognize the signs of a flare and will usually just let my doctor know that I am suffering a flare-up! My doctor does not even question me about which disease is causing my flare, she asks about the symptoms and we make a plan to deal with those symptoms.
Unfortunately, SLE is a different disease for each person it affects because it can target any of the body's tissues. Each of us has our own combination of symptoms and these symptoms range from mild to severe. Knowing our bodies and how the diseases affects us is how we come to understand our symptoms and the signs of a flare.
I hope that this has been helpful to you. Please feel free to ask any questions that you have or to let me know if you need any further information!
Peace and Blessings