Thread: Arthritis Woes... Updated with test results

OK -just last week got a letter in the mail from my CNP that my ANA titer was 1:80 and high it's pattern "speckled", my Rheumatoid Factor was 45 and high, my Erythrocyte sed rate was 16 and was not marked high.

I am now being sent to have more definitive tests for Lupus and RA. *cringe*

I DO know I have Sjohgren's, which falls into this category, along with Mixed connective tissue disorder and Fibromyalgia. The last time I had tests were in 2000 when these were identified.

I got these done recently for two reasons:

At a job, I was working 48-55 hours a week and was having foot pain that was not normal. My middle toe on my left foot has a big lump around the middle joint, and the entire ball joint HURT to walk, much less dance. In fact, my dancing has been really not so good - and I am tired of excuses. I just want to fix it!!!

On the back of my neck is a HUGE psoriasis patch. It used to be the size of a quarter, and now takes up almost the entire back of my head. I have three HUGE lymph nodes under it which scared the heck out of me. MY CPN is not worried about the lymph nodes as she feels they are reacting to the patch on my neck/scalp.

All other blood tests are normal as far as white counts, liver, CBC, all that. I am now having an ENA panel taken this week fr the Lupus possibility.

Anyone else in the arthritis realm please post here. I deal with a lot very holistically - and I will do anything to beat this or throw it into permanent remission. I'm asking as there is not a lot of information online that isn't so clinical it flies over my head! I will be referred to a Rheumatologist, but it'll be two weeks until then and I'd like to have a good grasp on what I can ask him about.

*deep breath*

Thanks for listening!

I'm sorry. It sucks.

I've had lupus since the age of 23 (I'm 41 now); it took a long, long time for them to finally, definitively say "Yes, this is lupus" although it was the thing the doctor I *first* saw when I suddenly got so sick immediately suspected. I spent years of "Something is wrong with you, but we're not QUITE certain what it is...oh hey, let's do another round of tests!" (I got tested for some rather surprising things). There's no one test that will say "it's lupus" unless you're very sick indeed, apparently.

The joint pain -- and it often is in very specific joints, it seems, like you could pinpoint it, but sometimes it's pretty general -- is the most constant symptom for me. The only time I haven't had it (it tends to be most pronounced first thing in the morning) is when I was pregnant with my daughter; I was one of the lucky women whose lupus went into remission with pregnancy (it's a roll of the dice, apparently, which will happen: better or worse). I'm like an old man in the morning. Exercise *really* helps, so you're ahead of the game as a dancer. Lupus may leave you more prone to tendinitis if you overdo it (learned this the hard way).

The thing about lupus is that at various times, different things will go wrong in different systems: for a while it's all kidney, then it's cardiovascular, then it's your eyes (I have had a couple of bouts of iritis, and MAN THAT STUNK -- and now I too have Sjogren's, so I commiserate on that; it's why I have to wear these damn glasses instead of contacts now -- my eyes were too dry) So the main thing is keeping an eye on any new weirdness that might pop up, however random and seemingly minor it seems to be. Even something that looks *completely* unlikely to be related to lupus can be part of it (hey, I thought the iritis was pinkeye at first).

Skin troubles are pretty much a constant thing. You might find that sunlight aggravates anything that's going on with your skin. Lupus skin stuff is often just plumb ugly: I tend to get discoid lesions on my chest and neck; it's very attractive to look like...that...especially if you're showing your belly while dancing (really; I assumed it was ringworm there for a while. Attractive!) There are medications that can help with a lot of that. There are some basic staples of treatment of lupus like Plaquenil (but courses of steroids, IME, are often Evil even if it's Necessary Evil), and there are a lot of medications that can help with individual symptoms.

I hope some of this is at all remotely helpful. The main thing I would say is that it's one of those conditions where you really have to listen to and be fully aware of your body all the time. It's also not predictable -- no two cases are alike. But I think many of us learn to cope with it quite well.

Thank you so much for posting here Tiziri! <3 *hugs*

Right now I am non specific, though I do not have the butterfly rash on the face (nor ever did). I do have a lot of weird body system issues, and a friend of mine who has Lupus has thought I'd had it for years. I was tested in 2000 and they said I did NOT. Yet -the Mixed Connective was one of the things that was rearing it's head when I was first diagnosed.

My CNP thinks it might be Psoriasis arthritis - based on the huge scalp thing I have going on, but like you've noted, Lupus has rashes too! *throws things* But I don't seem to have a lot of skin rashes at all otherwise.

I was fine while pregnant, but I had gestational diabetes and a fast heart rate to contend with both times pregnant - so my mind was not even on joint pain! lol!

I am headed off to the hospital to get the second round of blood draws for the ENA panel and making the appointment for the rheumatologist she recommended me too. She LOVES this guy, and feels he will be excellent on taking care of me.

Do you take meds at all or do you adjust them to what symptoms are flaring? I'm very very antsy about steroids and painkillers - I had a neighbor with RA, and she took so many pills it made her feel worse some days. She bloated to twice her size in weeks afterwards - and was so depressed they gave her stuff for that! It's a vicious cycle, and I'd rather fight everything as natural as possible - but I do think I need to get some of this stuff reined in, and that may mean meds for a time.

I am amping up my exercise as well, building strength, and there are days where I am so tired I just want to sleep day and night (and of course, feel worse.)

I've read that eating gold can help people with arthritis, specifically Rhumatory arthritis. Gold Schlagger has gold flakes in it, and some bakeries sell food grade gold flakes for wedding cakes. Believe it or not, we all have a little gold in us, just like our blood has iron.

Fun, but unrelated, fact: Horse-shoe crabs have blood made of copper instead of iron. When all the other copper based animals went extinct with the dinosaurs, the horse-shoe crabs just sort of stuck around. The medical field harvests blood from horse-shoe crabs (without killing them) and uses it in certain medicines and treatments.

Hugs back!

It *could* be psoriasis arthritis, it could be...several things, there's so much overlap with these connective-tissue disorders, and as we both know, one often leads to another (what is this -- Pokemon? Gotta catch 'em all?) I have also discovered that they (the medical establishment) know less about them than they'll cop to...for years, I was told, quite definitely, that a condition I have is never lupus-related. Then the medical literature started suggesting that yes, but it's unusual, then...well, O.K., it happens a lot in lupus.

*throws hands up*

I am *supposed* to be on a less-spotty regimen. Lack of insurance (I haven't been insurable in years!) means I tend to only really seek treatment and get on medication when something is clearly flaring up. I have one lupus-related condition I do take meds for daily, because [1] it needs constant care and [2] the meds are cheap. Bleah on the US helath system. As for steroids, I kind of suspect they are a bit overprescribed, after talking to some doctors. Some of the things they're a "go-to" for may respond better to other alternatives (Plaquenil, for one). But, that's just my suspicion. They are only given as short-term things, since they're frankly vile. Useful sometimes, but vile.

I think the best we can do -- and good on you for wanting to keep on keepin' on as best you can -- is even when we're tempted to overdo it, not do so (you will pay for a hard burst of activity later), and be kind to ourselves when we just can't do stuff. You know?

Good luck with all of these tests. May the news be good.

Wow - this sure jogged my memory!

That is a really neat fact - in fact - I think my mother used to get gold shots for her arthritis, she also wore copper rings and bracelets a lot! I read that gold really isn't used anymore as the companies who made the gold salts just aren't making it. It wasn't a cure - just a temporary relief for a period of time and contained major side effects.

As far as copper, was reading that with interest as well - also good for people with burns and anemia. Black pepper, brazil nuts, leafy green vegetables, cocoa, and oysters are all foods which contain relatively high amounts of copper. I think my Mom had been onto something, though much of the methods are considered antiquated today.

Thank you for sharing this - I had completely forgotten about her gold shots... Goldshlager sounds pretty fun though.

Sleep, as much as you need to. Throw away the alarm clock if you can. I have had since the age of 6. Ovaries to the wall when awake, sleep 9, 10 hours without guilt.

I am 55 years old and have suffered for years with joint pain (especially in the balls of my feet & toes, ankles, hands, wrists, back of neck) and was only diagnosed with RA 1.5 years ago by a wonderful rheumatologist. I too had been tested for a variety of diseases but it took my insistance on seeing the rheumy and his diagnose to confirm what I had suspected all along. I did not have positive markers in tests and did not show up (to the GP's eyes) on xrays. I also have other auto immune issues but the foot pain can be so intense that it wakes me up at night and most definitely affects my dancing, as does the constant fatigue; especially if I am having a flare-up. My rheumy was amazed that I dance with the inflammation and pain that I have but I am determined to not let the disease stop me. The RA in my hands doesn't make holding a veil or wings easy, but interestingly, I find zilling helps keep them limber.

It has been a long process of trying different medications to address the RA. Right now, I am on Plaquenil, Methotrexate, and have just stared Humira shots which I am hoping will help. Still a bit too early to tell, though.

My day starts with slow stretching just to get out of bed and then more to get out of the bedroom and on with my life. The medications have dramatically cut down on that time and I no longer have to wear wrist braces.

Just remember, you are not alone in this; feel free to email me nanbri@telus.net or pm me here on bhuz if you are feeling down about it; and that is a given that you will. It is very important to have a support system that understands what you are going through. I was very glad just to have a definite 'label' for what was wrong with me. Up to that point, I think people (and myself) thought I was just some whiney middle-aged woman The diagnoses gave me something concrete to fight!

Please be kind to yourself and be careful with intensifying your physical activity. It is perfectly okay to take breaks to accommodate the fatigue. In fact, I found it beneficial to discuss my symptoms with my coworkers so they could help me get through some of the bad days. I am fortunate to have understanding friends and family.

Thanks so much for your thoughts and words Nebula! :)

I just got the results back from my ENA tests. Ss-A and SS-B are both off the charts high (greater than 8.0) RNP, Jo 1, SCL-70 abs, smooth muscle ab are all negative. The ANA was high at 3.9.

I noticed in the last two years I haven't felt myself when dancing. It is a slow process of almost dehumanization. As a kid - I was a natural, always at the head of my class, scholarship material, then during my late 20's I kinda got away from it - got married and really focused on my career. I found bellydance and took to it immediately in my late 30's and felt really good about who I was. It saved me, no doubt.

Last night in a class - I could "see" the moves clearly in my head, but my body wasn't doing them. It's horrible to feel that.

With the new diagnosis' coming in, I am not sure how to proceed, and because of no insurance - there is a long delay on getting advice from a rheumatologist on what I can do to get better.

I am determined to, as many of you all are. I CAN'T let it win, but after today with all these "positives" I am pretty scared. It also kind of explains and justifies why I haven't felt good about my dancing lately. There IS a physical cause, not a symptom of aging as I have heard some people reason it out to be.

I understand. I am with you. Between pushing the up hill side of 60, starting the dance late in life, and having RA, it is no day at the beach to have your body not obey the harder physical demands every day that you ask it to. But one thing still sticks and Amaya said it best, dance smarter, not harder. There is still so much we can convey with out feeling like you have to work it so hard all the time.

Thanks Anala, I agree.

I had a rough day yesterday with some pain and I feel so limited right now. I push myself harder than anyone else - I set my bar so high that right now I can't even reach near it!

I'm pissed at my former physician - as for the last two years he has been trying to put me on antidepressants and see a counselor, thinking my fatigue is depression. I'm actually a pretty happy positive person - but I have been under some personal stress. I saw him repeatedly - and the weight gain started too, and a flu I couldn't seem to get rid of - all these things were markers for my conditions. Then, I get uninsured, and on my second appt to a Nurse Practitioner - she sends me away with orders for the ANA. I thank God for her. I know a lot of people take a long time to get diagnosed with arthritis conditions, but I had to lose my insurance to get diagnosed! WTH? I still feel after all of it I am under the care of angels.

One thing I have already set in my head is a dance benefit to this facility that cares for the uninsured. When I go in there -it's a lot of people just like me who have no other options but are hurting. These people are the mercy givers, and they need to continue their work. Eventually I will get insured again, but many do not have that option.

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Every time I see a doc..I tell them that I teach belly dance and go on and on about how much it could benefit their patients who have joint issues. I am the Bellyvangelist of New Mexico!

How about fish oil? My mother has been using it for about 6 month to help with osteo-arthritis and tendonitis issues, and now rarely takes any pain medicine. I can't remember the name of the book she got the info from, but I'll post it if I can dig it up. It has pretty strong anti-inflammatory properties.
I did easily find this article about it, so here's a bit more info.
Fish Oil & Pain Relief | LIVESTRONG.COM

I don't have any medical advise, I just wanted to send a <big hug>

Thanks Applegail and Brokentiles!

I will check on the fish oil. Got an appointment with my rheumatologist I used to see years ago (though I have to go cash for the visit *sigh*) for tommorrow. So I will have direction soon on what I have and what I need to do.

My holistic saw me Thursday, and HE said my adrenals are shot. I am taking a naturopathic adrenal complex. He put it to me this way: I have been under stress for about 2 years, because of this, I can get a bill in the mail and react the same way as a tiger coming at me. My "fight or flight" is so high it has depleted my adrenals, and the high source of stress has lead to my body attacking itself (arthritis) and producing cortisol (hence the weight gain).

I have been taking adrenal complex and the calcium "calamo" complex to fight the flare. He did warn me about a detox period and I am in that now.