Support, suggestions, information needed (Is it Lupus, tired of being so sick!)

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XSusanX
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/14/2012 2:47 PM (GMT -6)   
I do not have a positive ANA, but I am sure that what I am facing must be Lupus.

I have tested positive for antiphospholipid antibodies, raynaud's phenomenon, hashimoto's thyroiditis, and polycystic ovarian syndrome. I have had a false-postive syphilis test which I am told is very much an indicator of Lupus. I have had severe allergies my entire life, and in fact, the lower lobe of my left lung is entirely destroyed, so cat scans show a very clear 1 full lung and 1/2 a lung. I have thousands of clots in my legs, but they are all superficially lodged in the tiny blood vessels... I can't be treated for clots until I have a DVT. The doctor says I just have to put up with my intensely painful legs. I am not sure I am enamored of waiting for a potentially fatal event, thanks, but I take my one aspirin daily anyway. (Edited to add) I have also once been found to have a sedimentation rate off the charts, but I haven't had a sed. rate done since then.

Early this spring, I began having severe symptoms - pain, fever, and edema in my lower extremities, and exhaustion to the point where I couldn't function at work. The doctor ordered an ultrasound after I complained of pain below my right rib cage and found that I have an enlarged liver with signs of early fatty liver (not present the previous ultrasound last year), and my spleen was also enlarged. My doctor had told me last year that "they'd keep an eye on it". Over the summer, I've had a low grade fever on 2 of 3 consecutive visits.

By June, my liver and spleen were sticking out from under my ribs, not just palpable, but visible. I was sent to an oncologist who stated that he felt I might have lymphatic cancer, but the cat scan was negative. After that he said: "Your spleen isn't all that bad. You're a big girl, it may be that your spleen is just right for your size." Huh??????

I can't eat most meat, anything with fat, or any form of alcohol without repercussions... at one point (most of August) I put all my food in a blender and drank smoothies every meal just to avoid vomiting or bowel problems. You'd think I'd lose weight, but I didn't.

My feet are now so swollen that my shoes no longer fit and cause deep bruised "V's" in my skin when I wear them. When I wear my sports sandals, the swelling pushes out of every opening. Any activity now exhausts me. Attending Parent Night at the middle school last night for two hours has left me sleeping until noon, every joint aching, and barely able to function.

I don't understand how things can go downhill so fast. From Fall 2005 to October 2011, I worked as a retail store manager averaging between 65 and 90 hours per week... I ran circles around everyone. Sometimes it was hard with joint pain and bruising but I always found a well of strength to get myself through. I left that job to move to NY and found an industrial job, which I had to leave within 2 months because the chemicals in the air caused a severe systemic allergic reaction. So I got an office job, 40 hours a week, which should have been a piece of cake, but then, the above problems surfaced. My husband and I discovered that, after the cost of gas to work (55 miles one way), and the cost of insurance co-pays and lost time at work, I was netting - LITERALLY - $5 per week. As a result, I am now at home, unemployed.

My health problems have been blamed on my weight. I am a "flexitarian," which is to say, I am mostly vegetarian but sometimes have meat or fish. I don't load up on sweets, but you CANT tell a doctor that. They look at me, and at least two have said - quoted exactly - "you need to stay away from the cakes and pies." When I went to the doctor and showed them the deep bruises that showed up about 3-5 days following aching pain, he said "You probably bumped into something." To which I replied "with only my joints? You're saying that my coffee table, counter, etc, singles out only my hip joint, knee, and elbows? And I wouldn't recall having hurt myself?" for which he had nothing to say. All other bruises are pinpoint reddish-purple spots that show up on the inside of my arm and forearm and upper thighs. The fevers that come and go are "probably allergies." My normal temp is 97.7, so when a doctor who doesn't know me sees 98.9, it's not a fever. My fevers this summer average 99.9, however, so that's not so easily explained away. For the fatigue, I should just go to bed earlier. If I sleep during the day and the fatigue is too much to handle, well, I should go out and exercise more. The brain fog? Depression, thyroid... even though my thyroid is under control with medication.

I also get these small, painful to the touch but extremely itchy bumps on the insides of my fingers.. sometimes they occur in clusters, and I've had that from childhood.

Some days I feel so fragile that I wonder if I will live to see my kids graduate from college, get married, or bring me my first grandchild. It's scary, not just because I can't find a doctor who can help me without judging me, but because I feel so alone in this. I am a "don't whine about it - fix it!" person, but there is no "fix" for this. More and more, I feel like everyone looking at me sees someone who is making this stuff up and obsessing over every ache.

Post Edited (XSusanX) : 9/14/2012 3:14:51 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/14/2012 3:21 PM (GMT -6)   
I hope your rheumy can come up with an answer for you.

I look huge to doctors also, but I don't eat that much myself. They keep calling me morabily obese.

One tip I can give you right now is try to avoid UV light. The sun, fluoresent lighting, and halogen lights all emmit UV light which can increase our pain and misery. Use sunscreen, sun protective clothing and wear a hat.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

XSusanX
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/14/2012 3:31 PM (GMT -6)   
I don't have a Rheumy. My doctor made an appointment with one for me to see, then cancelled it in favor of a hemotologist who I met for like 5 minutes who had this to say:

"Wow, it's been ten years since your last leg clot "event," you are extremely lucky. So, until you have another DVT, I say we just wait."

I was pregnant when I had the blood clot "event" and had daily injections of heparin. My high risk OB said I should be put on Coumadin, but once the baby was born, no doctor would prescribe it. When I told one doctor I had antiphospholipid syndrome, she ordered bloodwork, which all came back negative. She said "Your lipids are great." She didn't know what APS was or what test to order... and didn't bother to look it up. So I called my OB, who called and told her to check my anti-cardiolipin antibody count... which was of course abnormal.

Everything with doctors is a struggle. I had one doctor say my TSH has to stay around 1 to manage my thyroid disease, and that normal TSH shouldn't be over 3. My TSH was 6. Every other doctor I saw said TSH is normal at 6. My TSH is now 7, for which my doctor said "isn't far over normal levels, and lowered my synthroid from 325 mcg to 200.

Just very frustrated.
Dx: Athsma, Antiphospholipid Syndrome, Polycystic Ovarian Syndrome, Arthritis, Hashimoto's Thyroiditis
Daily Meds: Synthroid, Spironalactone, Low Dose Aspirin
Daily Supplements: Vitamin D, Acidolphilus capsules.
As Needed Meds: Provental inhaler, Ibuprofin

XSusanX
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/14/2012 3:43 PM (GMT -6)   
Thank you for your reply, Joy!

Yes, I am aware of the sunlight issue. I was the classic freckled redhead as a child, light eyed and fair skinned.

My downfall is hats. I hate wearing them although I own many. I wear sunscreen, and found some great lightweight long sleeved shirts with vents in them. I love kayaking and grew up on a lake swimming and boating. My eyes are extremely sensitive to bright sunlight, causing them to water, which irritates me because people think I am crying, LOL. Photo-grey lenses have helped a little. My husband is the Ranger Rick type so we walk trails and go hiking when I feel ambitious. We moved from the shadow of Mount Washington in NH to the tips of the Finger Lakes in NY, so there's lots to choose from in either location.

We have two Golden Retrievers that love to run alongside us. Usually, I would not describe myself as sedentary, but that has changed this summer. I haven't taken a vacation in more than 6 years since I saved my vacation time for the flu (mine, my husband, the boys). Now that I am unemployed, we're hoping to spend some time enjoying the crisp fall air and getting to know the area better until I can find employment close to home.

Post Edited (XSusanX) : 9/14/2012 3:46:22 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/14/2012 5:26 PM (GMT -6)   
My doctor has to keep my TSH at .4 for me to feel fine.

Hiking in the woods through the trees should be able to shelter you plus the other things I mentioned.
Have you seen the hats at Coolibar.com? They have a wide variety of hats with built in sun protection. I hate hats too but I like the hats they have. They have clothes too.
I have the sunglasses with UV protection for my eyes. I perfer amber colored ones.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Zebra2014
Regular Member


Date Joined Sep 2012
Total Posts : 46
   Posted 9/15/2012 10:59 PM (GMT -6)   
Dear Susan -
I am so, deeply, sorry to hear about all that have gone through and are continuing to go through. Getting a proper diagnosis is an exhausting (and sometimes humiliating) effort. I am currently on medical leave, and I have spent most of my summer reading books about Lupus and auto-immune disorders. (I have SLE. I was *finally* diagnosed in Sept. 2010.) There is a book I recently finished that I think would be a great resource to you. It's called "The Lupus Book" (Fourth Edition) by Daniel J. Wallace, M.D. I checked it out from my local library, but I think it is such a valuable resource that I am going to buy a copy for future reference. The book is wildly comprehensive, not just about lupus but *many* related auto-immune disorders and overlapping syndromes, of which it sounds like you have many. The books covers antiphospholipid antibodies, raynaud's phenomenon, hashimoto's thyroiditis, and polycystic ovarian syndrome, the false-positive syphillis test, and may offer enough clues for you to tie some of them together. It saddens and frustrates me to no end that so many of us have to do all the leg work/dective work, and then try to interest our so-called healthcare providers into taking a serious and closer look. I wish you the best of luck! Please keep us all posted. --Nina (2)
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