Hi Everyone. I haven't been around for a couple of years because I was struggling through a difficult pregnancy in 2008. I have returned with frustration because my symptoms have worsened and my doctors seem baffled. I am seeking advice from those of you who have personal experience for ideas on how to approach the issues at hand with my doctors. The suspect (according to Drs) is Lupus - but I am not presenting with a textbook case. I do not have the tall-tale butterfly rash on my face, nor much of a rash at all. I do not suffer from Raynaud's Syndrome. I'm not sure about skin lesions when I'm in the sun but I do get burned pretty bad and blister with even minimal sun exposure but that even just started a couple of years ago so I'm not sure if it counts?
I have been chronically ill for several years - coming down with one thing or another. In late 2007, shortly after the birth of my 4th child, I suspected something was very wrong with me. After putting up a fight with doctors, changing physicians, and begging for answers - doctors (I sought several opinions) finally diagnosed me with Fibromyalgia. I petitioned for Disability - which began yet another battle that I'm still fighting - only to find that my health continued to decline beyond what is typical for Fibromyalgia patients. Treatments I have been on include Amitryptaline (sp?) which worsened my symptoms; Vitamin D therapy; Pro-biotics; Dietary changes; Photo-therapy; Psychological Counseling & various pain medications. I cannot take anti-depressants and I prefer to stick with more naturalistic/hollistic approaches to medical care after finally figuring out that I am just so sensitive to chemicals/drugs that the side effects aren't worth the trouble of taking them unless it's life or death - literally. Even pain medications I only JUST started taking because I just couldn't manage through it anymore! I hate feeling loopy and drugged up but at the same time, I was beginning to feel like I was going out of my mind and even complained that, "I wish I had cancer because at least then I'd have an out at the end of it all!" (Not a good place to be in, emotionally speaking!)
While I continue to exhibit symptoms of Fibromyalgia, my "flares" no longer go away and instead I have been suffering on a daily basis with mild to moderate pain with the occasional severe days. In January, however, my symptoms changed noticeably for the worse and I was again, at the Doctor's office for more bloodwork.
Tests so far have shown that my WBC is now extremely low (2.7), I continue to test a Pos ANA titer, Pos C-Reactive Protein; Elevated ESR, Monocyte Percentile & RDW CV levels and a slightly elevated Sodium rate. My blood pressure is also higher over the past few months (norm for me being between 115/65 - 120/70 and now sticks around 130/85+) which I know could be a result of all the pain I'm in.
I feel like garbage (to put it nicely). I am now experiencing significant kidney pain and have been so for just over a week. Urinalysis came back clean (which doesn't mean much to me given that 25 yrs ago I had a severe double kidney infection with clean test results and was in the hospital on a morphine drip for 4 days from it.)
I see a new rheumatologist next week. My PCP in the meantime has me on Cyclobenzoprene & Vicoden for pain. What should I be asking at this point? Could all of this be Lupus? It does run in my family (Grandmother & Great Aunt on both sides of the family).
I need to get control of things and right now I feel like a ping-pong ball being tossed from one doctor to another - with no more answers at one "paddle" than with the others.
Symptoms to date: Severe Fatigue, Muscle/Joint pain, Tender points, Cognitive difficulties, Memory Problems, Severe Anxiety,Depression/PTSD, hair loss, Pelvic Floor muscle weakness, Bowel Issues (difficulty having bowel movements but I'm not constipated - because the muscles just don't want to do their thing without...stimulation. I'll leave it at that). Also experiencing sleep difficulties, temperature regulation issues (I'm freezing all the time, muscle spasms, breathing difficulties (I do have Asthma tho), Acid Reflux, RLS/Sciatica, persistent mild fever (usually 99.6+), chronic illnesses and many days I feel as if I'm coming down with a flu - but most times nothing manifests. Finally, my appetite is practically Nil these days - maybe one small to moderate sized meal a day - but I'm not losing any weight. Is that odd??
There are 11 criteria for a lupus dx. You must have at least 4 of the 11 to recieve a dx.
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test
Other symptoms are:
shortness of breath
blood in urine
hair falling out (27%)
muscle pain and weakness (90%)
poor circulation in fingers and toes
tingling in extremities
raynauds (where fingers turn white when cold)
intollerance to cold
lymph node swelling (50%)
...to name a few
Which ones of the 11 do you have?
I hae a malar rash only when I am in the sun. It seems to quickly fade after I get in out of the sun. But I have skin lesions a day or two after the sun exposure. A dermatologist could do a skin biopsy to check for lupus too.
I'm not sure why they have such a hard time dx people w/ lupus. I would suggest that you ask the rheumatologist if they could try plaquinel for about 6 months to see if it helps. they will want to do an eye exam prior to starting the plaquinel.
I'm not sure what my last ANA titer numbers were because I haven't received the results on paper, only the phone call from the clinic stating that it is positive (and has steadily been so for the past 4 years - it's checked every 6 months b/c my PCP believes that I have Lupus that "just isn't presenting in the classical manner"). My Anti-DNA test hasn't been discussed with me as of yet either and the Rheummy that I saw last week said that he didn't receive anything showing I'd had one so I'm not sure if it was missed from the initial blood work order or if the results are floating around in digital/fax machine limbo.
Of the list you presented (and I've seen before) I have #1 (only after 15-20min or more of sun exposure and it fades away pretty quickly afterwards. I also have 3, 9, 10. I also have fever (documented medically at most every appointment, though not all of them), shortness of breath (although I do have asthma so it's hard to tell whether it is from that or something else, often times there is no wheezing with the shortness of breath). I also have hair fall/loss, severe fatigue, muscle & joint pain, muscle weakness, poor memory, headaches, freezing hands/feet (which may be poor circulation? I'm not sure.), tingling in legs/feet and sometimes hands, depression & anxiety (I have PTSD as a result of domestic violence in my past), intollerance to cold, photosensitivity (blistering & rash that resembles a sunburn but fades quickly and eventually I get serious flu-like symptoms that last a day or two after exposure), lymph node swelling in neck/head, underarms, & chest area. Definitely no weight loss...(the former anorexia in me would be giddy if that were the case!). Instead I maintain a "fluffy" figure (1 yr post-partum and still nursing) that doesn't seem to matter if I skip meals, eat healthy foods, ditch fat & sugars, or chow down on junk food. The weight neither increases nor decreases - which is terribly frustrating.
Thank you for the prayers. I've actually decided to take action on all the medical chaos and am just beginning my own blog to help keep me on track. Feel free to visit if you're inclined: http://raincloudstorainbows.blogspot.com/
Wow. I just came across your posts, and they break my heart! I have to ask if you've been tested for Lyme Disease and other coinfections. ALL of your symptoms are on the Lyme Disease symptom list (Lupus is one of the diseases it mimics). Check out the list in this document: 2008 guidelines on the ILADS web site.
Keep in mind that fibromyalgia is an acknowledged set of symptoms with an unknown cause. All of the symptoms are consistent with Lyme Disease, meaning that if a doctor ever suggests Fibromyalgia as a diagnosis, then Lyme Disease needs to be examined and ruled out.
Unfortunately, many doctors (especially infectious disease, rheumatologists, and neurologists) believe Lyme just causes arthritis in the knees and some fatigue and don't realize how severe and debilitating it is. Many people who have been sick for a long time will test negative, and so I encourage you to go see a Lyme Literate Medical Doctor to get checked out. Ultimately, Lyme is a clinical diagnosis, not one based solely on test results. Pay cash if you have to. Your life is worth it!
Do your own research on Lyme to learn how extensive it is. For example, I have fatigue, cognitive problems, shortness of breath, pain in my ribs, and lots of digestive problems and abdominal pain. The GI doc I saw while hospitalized admitted knowing "nothing" about Lyme. I don't even think he knew it could affect the gut, and yet it can affect the intestines, stomach, gall bladder, and liver. Lyme can also affect the kidneys, leading to UTIs. It suppresses the immune system, so many people with late stage Lyme test negative, especially the sickest patients. Their system is barely fighting the disease anymore.
This is hard for me to type, as it's such a scary concept, but there's lots of evidence that Lyme can be transmitted to children in utero. The "official" medical position is "no", but there are many testimonials out there of autism like disabilities and ADD/ADHD in children born to women with Lyme (by patients AND some doctors). If you do have Lyme, your children also need to be examined by a Lyme Literate Medical Doctor.
Good luck! Please feel free to message me if you'd like to. My heart goes out to you. I remember how I felt when I was so incredibly sick and how desperate I felt.
First of all, I'm very sorry to hear about all your health issues. I was diagnosed with Lupus last September and almost every single one of my symptoms line up with yours. This may mean nothing since Lupus exhibits itself so many different ways. I'm 20 years old and have everything you described except for the depression (just a little bit of anger from time to time but that's to be expected hehe). I lost a bunch of weight a few months ago and am still not eating much at all but my weight's now being maintained so I don't think it's that weird. I do hope you start to feel better. And just know you're not alone!! This stuff is a long process. Keep us updated and let me know if you have any questions. Best of luck!
I never had a rash either nor the other symptoms! my lupus hides behind other things going on.they.mimic each other and mine.lays dormant not everyone symptoms are.going to be text book....I hope they find what's wrong!!! Good luck
I am so sorry about what you are going through. If your PCP thinks you have Lupus why doesn't he put you on Plaquenil? Plaquenil doesn't help my pain, but it does help with my blood work. I still have bad days, but not everyday. I am on several meds and one for chronic joint pain.
No more breast feeding if you take the Plaqeunil. Just ask your doc, he just might listen. HAHA
I don't understand the photosensitive thing. I know if I am out in the sun for even just a few minutes my cheeks get really red, even with sunscreen on, but i was told years ago that I have roseaca. I wonder if I have roseaca or if it is really a faint butterfly rash, it has like little bumps that pop up across my cheeks as well, not necessarily even when I have been in the sun. When I went to the Rhemo doc I did not check yes on the photo thing because I thought that was something different...hmmm.
I have a lot of those same symptoms and I think because I was diagnosis with the Fibro the doctor's just ignored my complaints. I have dieted and exercised and trust me I have detoxed, and even went carb free, cut out soda's and not one pound for over three years! I am going out of my mind with all the pain and knowing if I could loose a few pounds that it would lessen the strain on my body. I know that it can be frustrating!
Since I had a positive CRP my doc finally realized that I was not crazy and refered me to a Rhemo, and she has ran every test under the sun on my and some are elevated and some not so much...the worst part is just the waiting and not knowing. i know how you feel about just wishing for an end, I don't think I have ever struggled with such an extreme amount of ups and downs over the last couple of months. Just hang in there, and you need to get a really good Rhemo that will listen to you and help you. my mom went to a bad one a few years back, so if you are not happy, find a good one. Our lives are not meant to be filled with this frustration and pain. I hope you feel better soon and wish every one the best, we deserve it:-)
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