View Full Version : Lupus and symptoms.. HELP! New here, from Kent, Ohio

07-25-2008, 09:59 PM
..... having to retest because I'm having difficulty obtaining my records from my doctor(s) from where I used to live. My sisters have Lupus, CFIDS, and Fibro Myalgia, and so did my mother.. I have a doctor's appointment with a new doctor next week and I've written everything and all of my symptoms down, from A-Z, for the doctor's appointment. Here's what I have written down so far, from the top of my head (these symptoms mostly all come on at once, but most are ALWAYS there) NOTE: The sun brings on alot of this

Symptoms (They come on all at once, and go away for a short period of time, then come back- most of these STAY!)

(Previous diagnosis of Systemic Lupus, Fibromyalgia, Vascular disease (hardening of the arteries), Chronic Bronchitis, Bipolar Disorder, IBS, Lactose Intolerance, Interstital Cystitis, and Arthritis), and also tested positive for Anemia and CEN-125 test came back 3.6 in 2005); also was referred to an Endocrinologist back in 2003 because Dr. Pecar tested my thyroid and it came out abnormal- after the Specialist ran blood tests, she seen nothing!

* Difficulty concentrating
* Feeling Lethargic (can be serious/severe at times to where I could just pass out where I'm standing- as if I feel intoxicated or something)
* Dizziness
* Severe fatigue
* Abdominal pain that can be as severe as child birth!
* Manic moods that turn into dizziness and panic attacks (every single day, about twice or more per day) Getting worse!
* Muscle aches and pain
* Immobility
* Bone pain
* Constant ligament injuries
* Swelling of joints
* Neck pain (can be so stiff at times to where I cannot move my head at all!)
* Severe migraines
* Depression and anxiety (leading to isolation- been a numerous part of my life)
* Hardening of the arteries
* Failed PFT (Dr. Pecar said I had acute Bronchitis)
* Severe lumbar and upper back and also Hip pain, radiating down to my legs and feet, and most of the time I cannot walk!
* Repeated kidney/urinary tract/bladder infections (Tested numerous times and found protein in my urine w/ blood since I was young)
* Nerve damage
* Pleurisy (happens about once per month- sometimes VERY severe!
* Heart Palpitations and periodic chest pain
* Glands always swollen for no apparent reason and severe ear and jaw pain
* Severe allergies
* Lack of energy- usually about 20 days out of the month or more (sometimes I'm VERY immobile!)
* Horrible memory loss (also from lack of concentration- no matter how hard I try!)
* Confusion, which can be severe! (spending hours on making one simple decision!)
* Low blood pressure since I can remember
* Severe sensitivity to the sun!! (I get blotchy red skin on my face and legs)
* Patches of scaly skin- lesions on my chest and upper arms and mostly my face
* Butterfly rash- periodically
* Constant urges to urinate w/ pain
* Morning stiffness which last for usually an hour or longer
* Unexplained low grade fevers- always finding myself w/ goosebumps and feeling cold- body temperature always elevated
* Severe RLS at times
* Difficulty sleeping at night
* Numbness and tingling for no apparent reason (especially my fingertips and toes/feet)
* Mouth ulcers which do NOT go away until another one starts- only happens when the other symptoms come on
* Exposure to the sun usually brings upon all of these symptoms or when it rains
* Experienced really bad hair loss in 2001- still happens but not as severe
* Severe Visual Disturbances (even when I’m wearing my corrective lenses)
* Difficulty Swallowing
* Dark circles under my eyes when these symptoms come on

If anyone has any feedback, please let me know.. Thank you so much!

P.S. Feeling like dirt today!!!

07-26-2008, 01:10 AM
Hi Alli,
First of all I want to welcome you to the site. This is a great site. There are a lot of us that come here with Lupus and other Auto-Immune problems. There are a lot of folks who have a lot of knowledge.

You have a lot of the symptoms for Lupus. It also sounds like you may have Sjogrens Syndrome. Has your doctor mentioned this to you? I am also wondering what kind or type of Anemia you have. It also sounds like you have Pernicious Anemia going on too. Has the doctor tested you for low iron and B12 deficiency? The reason that I ask if you may have PA is because of the Periferal Neuropathy (the tingling of the hands and feet and mouth sores) and the memory problems etc. Do you get the sores in the corners of your mouth and a sore tongue? Has your doctor ever mentioned this to you?

Are you taking any medication for the Lupus um like Plaquenil or Prednisone or any of the other medications for the Lupus? When do you see your doctor?

I also have one sister with Lupus and my twin sister has Celiacs Spru as do I. My twin does not have Lupus. I have Lupus, Sjogrens and PA etc. There will be others that will post with more information. Saysusie is very knowledgeable and wonderful as is Oluwa and Lauri. I hope that you keep posting and let all of us know what is happening. We all care very much about what is happening with you.

God Bless,

07-26-2008, 07:11 AM
Hi Kathy.. thank you so much for your reply!

I had another opinion from another doctor in addition to the one who diagnosed me with anemia- he said that my hemoglobin was around 13? I guess it was good- he asked why the other doctor said that I am anemic.. still a mystery, there.. and no, they didn't diagnose me with those other things and I don't even know if they've checked.. All I know is that I'm a mess and there's still alot of mysteries.. they thought I had numerous different things prior, but obviously what they thought I had wasn't it.. and I guess that's where the Lupus comes into question..

I get ulcerations around my mouth as well and sometimes my tongue can be sore, but it doesn't happen that often.. it only happens when I get all of the other symptoms.. Yuck.. I hate it! LOL

Thank you so much for your reply, once again..

07-26-2008, 12:04 PM
Hi Angel;
Welcome to our family. I agree with Kathy; your symptoms could be Lupus as well as several other overlapping illnesses. It is not at all uncommon for those of us with Lupus to also have overlapping diseases (such as the ones that you mentioned). Now, some of your symptoms (IBS, Lactose Intolerance, severe headaches) may be due to the Fibromyalgia - although some of these symptoms are also caused by Lupus, so not only do we have overlapping diseases, but we have overlapping symptoms! Interstitial cystitis (IC) is an inflammation of the bladder which can occur by itself or in conjunction with other autoimmune diseases, such as fibromyalgia, scleroderma, lupus, or Sjögren's Syndrome. You have mentioned other symptoms that could be attributed to Sjogren's Syndrome which is another disease that often overlaps with Lupus. Arthritis pain is a very common symptom of Lupus and often we are misdiagnosed with Rheumatoid Arthritis prior to finally getting a Lupus diagnosis. The primary difference is that Lupus Arthritis does not cause deformity or crippling degeneration.

Of course, with Lupus, the swelling of joints ect. are due to inflammation. Lupus is a disease that causes inflammation and other symptoms throughout the body (hence the term "systemic") - in tissues, joints, muscles, and internal organs.

Protein in the urine is an indication that the kidneys have been affected by Lupus (in the form of inflammation which is known as nephritis). It is also not uncommon to have protein in urine at one test and then to have no protein leak at another test. This usually indicates mild lupus nephritis. At any rate, when the kidney is inflamed, the blood pressure frequently rises and blood pressure measurement should be one of the important parts of the physical examination of lupus patients. When the kidney is more severely damaged, its normal filtering process is grossly impaired and toxic elements such as urea and creatinine, normally present in the blood in small amounts, build up leading to weight loss, nausea and general malaise.

The difficulty concentrating and fogginess (affectionately termed in Lupus communities and "BRAIN FOG") are often due to CNS involvement due to Lupus with respect to Cytokines. Cytokines are a necessary part of our immunity. Inflammation should be a temporary response to injury or infection. It is the over-production (too many) of certain small cytokine molecules that leads to the invasion and inflammation of an organ or body system. In the brain, cytokines can cause behavioral changes. They can either prompt or worsen depression, anxiety, or anorexia. They may cause a person to become withdrawn. Cytokines create fatigue and interfere with sleep patterns. They are one thing responsible for what has been termed "brain fog."

Anemia is also a very common symptom of Lupus and can manifest is several ways. Anemia can be measured and discussed in several different ways, including a low red blood cell count, low hemoglobin, or low hematocrit. Most doctors define anemia based upon hemoglobin levels. The commonest explanation for anemia is reduced red cell production. This may be due to inflammation; kidney problems (when the kidneys do not produce enough of the hormone, erythropoietin, that stimulates the marrow to make more red cells); iron deficiency (without which hemoglobin cannot be made—iron deficiency may result from menstrual bleeding or from intestinal bleeding due to non-steroidal anti-inflammatory drugs); or direct depression of the bone marrow by certain lupus drugs (such as azathioprine or cyclophosphamide).

Another type of anemia in Lupus is due to the premature destruction of red cells. This is called hemolytic anemia , or simply hemolysis . Sometimes, patients with hemolysis will appear slightly jaundiced, and in this situation, a yellowish tinge to the skin and eyes does not mean a liver problem. Hemolysis is most commonly due to antibodies that attach to red cells, causing the cells to be eliminated from the circulation. When coupled with thrombocytopenia (a low platelet count), this can mean a condition named thrombotic thrombocytopenic purpura (TTP for short).

Then there is a low platelet count which is termed thrombocytopenia which is also quite commin with Lupus. As the platelet count falls, bruising, tiny red bleeding points in the skin called petechiae (especially on the lower legs), nosebleeds, or other bleeding may occur. In lupus, the most common cause of thrombocytopenia is almost always due to antibodies. On rare occasions, a person with lupus may have antibodies against both red blood cells and platelets.

As you can see, all of your symptoms can be related to Lupus as well as to other overlapping diseases. You are doing the correct thing by listing all of your symptoms for your next doctor's appointment. But, you may not get one definitive diagnosis, so do not stress about that and do not become overly focused on getting one diagnosis. You may find that, as before, you are diagnosed with several different things. Many of these overlapping diseases (as most are also auto-immune/connective tissue disorders) respond to the same types of treatments and require the same types of precautions and lifestyle changes in order to manage them.

We are here to help you in any way that we can and as much as we can. You are not alone when you are here with us!

Peace and Blessings

07-26-2008, 07:47 PM
Ya know.. I have thought of this before.. having different other illnesses, but I've been told that I sound ridiculous so many times already that I kind of forced myself to stop complaining so much.. LOL.. BUT, of course no one really understands what we're going through until they've either BEEN through it, or educated themselves..

I used to sit and listen to my mom and sisters bicker about how much agony they were in and I would stop them dead in their tracks and say, "OMG! Stop! You girls have MORE ailments than any 90 year old woman!" Know what they're reply was to THAT? "Alli, you WAIT! As soon as you hit your late 20's or early 30's, you'll be going through the same, so watch what you say!" Had I'd known.. darn! I'm going through it alright.. and THEN some! lol

I'm definitely taking every single word you ladies have said to me and following up on it- perhaps fill my doctor in on some info as well, being that she may not have studies and educated herself on Lupus and the other underlying illnesses- that is IF she hasn't.. But, we'll find out..

I don't know how to thank you ladies enough.. honestly.. I'm so glad I found this forum! I'm here to stay.. that's for sure.. :D.. talk to everyone soon!
Much Love!

09-15-2008, 02:54 PM
have many of the same symptoms, Diagnosed with SLE a year ago with discoid lupus that left horrible scars all over lgs, back & butt. Controlling w/Prednisone & pacquinel. Now have a psoriasis type rash on back of beck , back & butt. Itches like crazy & makes me very anxious. Already taking 180 mg of generic allegra 7 some benedryl but nothing makes the itching go away. I understand the depression & none of my docs seem to be able to do much. Anyone have this kind of itching??? If so, help!!!

09-15-2008, 04:19 PM
My daughters ( 13 1/2 and 8 1/2 years of age) have the same darn problem as well- in addition to myself. I have scars on my upper arms and left side of my face. My daughters have it on their legs, especially my youngest daughter..
I haven't taken any meds for it YET, but I'm bound to.. I haven't gotten in to see my new doc just yet.. THAT is like pulling teeth trying to get them to stop canceling on me! sucks!
Anyway, You're definitely not alone in THAT category...