Please Help? What do I ask the Rheumatologist?

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New Member

Date Joined Feb 2011
Total Posts : 8
   Posted 2/12/2011 10:17 PM (GMT -6)   
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 suspects (according to Drs) are Lupus or R/A currently - 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 phenomenon that I have noticed and I'm not sure about skin lesions either, but when I'm in the sun but I do get burned pretty bad and blister up 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 now are showing that my WBC is now extremely low (2.7), I continue to test a Pos ANA titer as I have for the past four years. Also testing positive for C-Reactive Protein; ESR, Monocyte Percentile & RDW CV levels are all elevated, as is my 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 am now experiencing significant kidney pain which has worsened and is beginning to travel to my shoulders. The pain began just over a week ago. Urinalysis came back clean last week (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.) Today I realized that I am urinating much more frequently and there is a constant sense of pressure as if I need to urinate again just minutes after relieving myself in the restroom. There are no symptoms of urine/bladder infection (pain or burning) - just really a constant ache in my left & right flank, and as stated before - radiating achiness into my shoulders now.

I feel like garbage (to put it nicely). I see a new rheumatologist next week. My PCP in the meantime has me on Cyclobenzoprene & Vicoden for the pain. What I'd like to know from all of you is...what the heck should I be asking the new doctor at this point? Could all of this be Lupus? Could I have developed kidney troubles or am I seriously just having THAT bad of luck and have a UTI atop of the Fibromyalgia and possible other diagnosis? Lupus does run in my family (Grandmother & Great Aunt on both sides of the family) so I'm half expecting it to be positive. It is difficult to be patient with the doctors after four years of, "well let's just wait and see if more symptoms arise..." and "we know something is wrong, we just aren't sure what yet".

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.

My Overall 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, TMJ, RLS/Sciatica, persistent mild fever (usually 99.6+), I have had 17 miscarriages including the loss of my 2nd daughter's twin, I've had 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. (Something I also find a bit odd.)

So, to summarize...1) I would love some thoughts as to my symptoms and whether or not you folks who've already been diagnosed with Lupus find them similar to your own experiences. And 2) I need to know how to ensure that I'm getting the most out of my next doctor visit by knowing what questions I need to be asking the new rheumatologist in order to get a diagnosis. and 3) I would love some ideas on homeopathic/naturalistic treatments for Fibro/Lupus (I list both because it is my understanding that many Lupus sufferers typically have both diagnosis.)

Thank you in advance for your advice and assistance.

Post Edited (Kenderyl) : 2/12/2011 10:25:12 PM (GMT-7)

Regular Member

Date Joined Dec 2009
Total Posts : 130
   Posted 2/12/2011 11:28 PM (GMT -6)   
hi.I have not yet been diagnosed officaially,but they are leaning toward it.My ana is positive over and over,vitd defieciency,b12 shots amtriphaline,now plaquenil.They said I had chronic fatique 2 years ago,put me on gabapentin..from there put on 50 pounds in 3 months.It made me seem like a drunk.I think it was long term b12 deficiency that caused alot of problems.Then they said I have fibro...but Im swelling like crazy,sister has lupus,I have hypothyroidism(all auto immune disorders.From my understanding and Ive seen alot of docs,they are very hesitant to make the lupus call.I too think it is a given and so do half the docs,but the rhumy doesnt want to make that call yet.I have the same pee-in thing too.I feel like I have to go alot,even after Ive went,and some leakage-infections.Just had a physical and came back ok,so I have no idea what their thinkin.I am also sooooo short of breath,I have a condo with 3 floors and its so hard...then my heart feels like its gunna pop,heavy chest.I dont know what else you would actually ask the rhumy,cause they can be very sticky-if they dont want to let you know anything they wont.Sometimes I think its a ego thing.oh,do you have blisters on your scalp at all?I do get a very red rash across my cheeks but its not raised.Ask the rhumy about plaquenil,its recommended for lupus and ra.
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