PDA

View Full Version : Previously dx'd lupus, now tests are negative but still pain



pwincess
08-24-2005, 06:14 PM
I am new to this, my first post. I was diagnosed 1 year ago with SLE and Mixed Connective Tissue disorder by 2 different doctors, took Methotrexate and Prednisone. Didn't think Methotrexate was helping after 3 months, and didn't want to stay on Prednisone because of all the side effects down the line, so got off. Possibly went into remission. But later, started hurting again, but tests came back negative this time. Problem: constant pain all over every day. Is it possible for my tests to be negative but I really be in a flare up? I'm so confused, extremely fatigued, in continuous pain. MD gave me Rx for Vicodin for 1 year now, and it is the only thing that helps me get through the day. However, now that I've taken it so long, I have become tolerant and need more. MD won't give more than 3 tabs/day because of the Tylenol hurting my liver. This doesn't even touch my pain, it's like eating M&Ms! At this point, I feel like saying "well the lupus could cause me liver damage too, the Plaquenil could cause blindness, the Methotrexate and Prednisone many other horrible conditions! I already take enough NSAIDS to cause stomach ulcers! What difference does it make if I get addicted as long as I have quality of life and I'm not bothering anyone else!? This sounds horrible, but at this point I don't care. I cannot go to work and do everything I have to do if I'm in constant pain. I would have no life whatsoever! I wouldn't want to live anymore. Can anyone relate? Any suggestions? :(

Saysusie
08-25-2005, 11:02 AM
Hi Pwincess;
Lupus is a chronic illness and, unfortunately,lupus is different for each individual. It often appears in cycles, which can consist of:
*a 'flare', with severe acute symptoms needing medical attention;
*a 'chronic' phase, when symptoms may continue but are less severe;
*a 'remission', when symptoms may disappear completely for long periods, but can return.
One of the most common symptoms for lupus patients is pain in the joints, especially the hands, knees or wrists. Joint swelling, stiffness and redness can occur but usually do not last longer than a few days in any one joint.
It is possible (and I am living proof) that you can be in remission and still suffer from the swelling, pain and fatigue of lupus. The only difference is that I can generally control the pain without a lot of meds.
Or, you may have what is called "Incomplete Lupus" - It may be a connective tissue disease that has clinical overlap with SLE (i.e. Sjögren's syndrome); It may be an unspecified connective tissue disease. In some cases, there will not be sign rheumatic disease at all, but symptoms may be present.
Individuals with incomplete lupus erythematosus (ILE) are those who have some clinical features of SLE, but not all of the required diagnostic criteria. According to this classification, a person is said to have SLE if at least 4 of the 11 established criteria are met. Someone who meets only a few of these criteria might be considered to have ILE by their rheumatologist.
Common features of Incomplet Lupus are:
- tiredness
- low-grade fever
- joint pain
- hair loss
- the facial "butterfly rash"
- a positive test for antinuclear antibodies, or ANA (although you can have a negative ANA and still be diagnosed with Lupus).
A person can have SLE, but show only two of the required classification criteria.
Only a few studies have been published on the clinical presentation and outcome of ILE cases, and the variation in selection criteria and methods used in these studies makes it difficult to reach conclusions.
Nevertheless, people with ILE appear to have a milder disease, frequently with painful arthritis and cutaneous involvement and usually a positive ANA test.
Perhaps you can discuss these possibilities with your doctor if they seem to fit you at all.
I hope that I've been helpful - let me know if you need anything more!
Peace and Blessings
Saysusie

pwincess
08-25-2005, 08:38 PM
Hi SaySusie. Thanks for responding, I was beginning to think everyone must have thought I was nuts. For the past 5 years I have been having symptoms, it's gone into remission at times I think, or the meds helped. Anyway, for the past year I live with extreme fatigue, simple tasks wear me out, forget about exercising! I have intermittent low grade fevers with the butterfly rash, (which is what clued me in to lupus - I went to a tanning bed and had a complete photosensitive reaction, butterfly rash and all over body rash, thought I caught a fungus from the tanning bed). For the past year I live with severe joint pain, especially in the hands, wrists, knees and ankles. Can't shake it. It takes everything I have to get out of bed in the morning. I now work 4 days/week instead of 5, and am considering decreasing it further because this is killing me. To top it off I have a horrible case of TMJ and I think the lupus makes it worse. I was dx'd also with Mixed Conn. Tissue disorder and fibromyalgia. I had a positive ANA, positive anti-Ro, and positive anti-Smith. They said I could possibly have polymyositis as part of the MCTD. Anyway, the only way I can lead a half way productive life is if I take the Vicodin 3 times a day. This is not how I choose to live, but thank God for the meds because otherwise I wouldn't want to live at all. I know you can become addicted to Vicodin, and I have become tolerant and need more than I used to, but I don't consider it addictive if you take the medicine because you absolutely need it. If people want to lable me an addict, I don't care. I'm over that. It is my life and I want some quality to it. Stayed home for work yesterday and today, which is rare for me, and for the first time in my life I considered not living. Wouldn't kill myself because of my religion, but I dreamed of how wonderful it would be without the pain and fatigue every minute. I want to see my children have children, etc., but at this point, I feel they may have to get by without me. Physical therapy helps only while they are doing it (ie tens units and massage). I've been in bed for 2 days now and am so depressed. Yes, I'm also on an antidepressant for 5 years. I went to a new doctor today (because my rheumy told me that his lupus patients don't hurt all the time like I do - humiliated me!), and he put me on 80 mg/day of Prednisone and directions to slowly taper off. Put me on a new antidepressant, Cymbalta 30 mg, he says it helps with neuropathic pain. Anyway, I'm hoarding my Vicodin and so afraid to run out. Pathetic!!!

Sorry this is so long! Anyway, the last tests I did in March showed a normal ANA again after it being high 2 times at the end of last year. Is this possible. Does it mean I'm in "remission", if so, why am I still having all the symptoms.

I appreciated your reply. It meant a lot to me. I'm so sad. If you could shed light on anything else I'd love it. Thanks, Sharon (pwincess)

Katalanta
08-27-2005, 07:42 AM
Hey, can I chime in here? What the heck do they call remission, anyway?

When I walked into the doc's office with the full, classic butterfly rash he said, "You can't have that, your last numbers were good!"

My last blood tests were really good. The best numbers I've racked up in my life - and a couple of days ago I had the very pleasant experience of a few hours without fatigue. That was GREAT! Then the fatigue came back again, and if I hadn't been so tired I would have wept.

Anyway, my question is - if my numbers are good, but my joints are still swollen, I popped a butterfly, have sores in my mouth, and the fatigue is nearly constant...what constitutes an official remission?

hatlady
08-27-2005, 11:07 AM
Ain't it a pain!

Thanks for the fabulous info Saysusie. I've seen the same thing. Good tests, bad pain. When the tests are BAD, less pain. Go figure.

I think it is actually fairly common for us to have symptoms that do NOT mirror our pain levels. Why? Life is weird. Or God has a sense of humor, I'm not sure which.

Don't feel that you're crazy, and if your doc won't believe your pain, you need to look around for a new one.

Pwincess, have you tried any of the homeopathic/wholistic remedies? I take a teaspoon of turmeric along with fish oil and ground flax seed every day - that helps with pain if you do it over time. Also, ginger - either as powder or capsuls, or taken as ginger tea - will help your stomach feel more comfortable.

If you do decide to try that, let your doctor know first. Always a good thing to do!

Stay away from that tanning bed! And out of the sun as well. In Lousiana you're worrying now about another hurricaine - be careful while preparing, STAY OUT OF THE SUN! I've learned that staying well covered AND wearing sunscreen AND wearing a wide brimmed hat contribute to my feeling better. A sunny day and short sleeves equals pain. A sunny day, long sleeves (with sunscreen on the arms as well), hat and jeans equals less/no pain and a good time in the garden.

Hugs dear, and keep posting. Let us know if you're in the danger zone for the hurricaine and we'll all keep you in our thoughts/prayers as well.