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A new chapter

I was diagnosed with undifferentiated autoimmune in 1991. Took plaquenil until 2012 when a slight change in my left macula was detected (first time using super duper eye machines, new eye doc) so off the plaquenil road. Somewhat afraid and wary of the other meds I wanted just to use prednisone as needed. All went well until after lateral meniscus surgery on my left knee May 2019 (mind you, I’d had a knee replacement and shoulder surgery - severed bicep ligament - and bad flare ups didn’t occur). But this time things were persistent and prednisone (up to 15 mg a day) wasn’t making a dent. At this point I was 70, and my rheumatologist shut down her office, I was keenly aware that prednisone at my age was no longer a great idea, and it took weeks to finally get in to see a new rheumatologist. I had my first positive RA test, along with positive ANA, etc. I asked if we could try minocycline first, and while that worked and put things in remission, around the same time I had a fall in the kitchen. I live in the country, dogs (lots), horses, cows it’s not boring. I slipped on dog slobber (I was barefoot) as opening the frig and fell very hard on my bum. That reverberated all the way up my spine to my head. Thing haven’t been the same since. After a couple of months and back pain that wouldn’t leave (that affected everything, even breathing), Covid occurred and I couldn’t make an appointment with brain and spine people until late August 2020. Started with spinal injections in September and things were getting better, but then a flare came - which I was expecting - and back to rheumatologist and blood tests, etc. I talked him into plaquenil with a follow up eye exam in 6 months promising to go to a stronger med if eye exam didn’t go well.

I just got through with the three month follow up and my rheumatologist told me I had a positive double stranded DNA ANA test (forgive me if I left off a few words in that string), and therefore I do have lupus. Confused I asked “don’t I have to have a list of things for lupus diagnosis?” He said yes, my official diagnosis was still undifferentiated, but the only people who get a positive on the Double stranded DNA ANA test have lupus. This open up a whole new can of mental worms and questions for me! So I started searching online and came here.

I still haven’t out how long that double stranded test thing has been around, but if it’s not new, how come they’ve never done it before? And when searching this website I saw “Lupus Headaches” and I thought “well this is a fine mess” because I’ve had migraines since I was 8 or 9, headaches daily - I took Excedrin all through the day until my stomach doc said “no more”, then started seeing a neurologist and she started me on butalbital and Botox shots. The shots made no difference, butalbital helped but than my primary got worried about addiction. I explained my point of view: I take one, two, maybe three a day and I’m without pain - better than 10 Excedrin a day and a stomach ulcer. Then a change within the neurologist camp and the new fellow is talking anti-seizure drugs. Since I’d already tried elavil and some other antidepressant used off label and it didn’t change a thing I was resistant to yet one more brain altering drug and I suggested we check out my neck and there’s arthritis in my neck. Off I went to my first pain doctor with needles. Those injections were grueling, I had relief from some pain, but headaches continued. I stopped seeing that neurologist and my primary continued my butalbital. Let me say I feel no effects from butalbital except a respite from headaches. I kept working, taking care of dogs, horses, cooking - until the fall. X-ray of my back was “uh oh” so had the MRI and referral to brain and spine folks. Injections have greatly decreased some pain, and we tried some injections in the back of my skull, and even a neck nerve block for headaches (which gave me the head from h*ll for about five days) and I’d go two days with no headaches (and no pills) only for them to slowly come back. I’m saying all this to show how hard I’ve tried to please doctors’ concerns - but these headaches (and occasional migraines) have been a persistent part of my life for over 60 years! I’ve asked in the past “could these headaches have anything to do with autoimmune?” and shrug of shoulders. Then I see on this website 72% of lupus patients have migraines and headaches and while it was an “Aha!” moment, I must say I was also a bit peeved because of all the needles and harassment over one to two pills a day!

So I appear to be in new territory. I asked my rheumatologist if we could decrease my plaquenil to 200 mg (from 300) and we did, but I’m feeling some little muscle stuff here and there throughout my body. My hands and feet are fine (they’ve always been my first signs of when things were flaring, not so any more). My knees hurt (mind you, one knee isn’t mine) so this is muscle, tendon, ligament stuff. And now it seems - in my head at least - to be confusion between “is this my back? (It’s a mess) Or is this the autoimmune/lupus? The most scary thing of all, which the spine pain management is working on still, are these electrical like pains that start way low in my back and shoot down my legs. It usually happens at night, sometimes middle of the night. One evening I got up to let one of the dogs in and Boom! It hit like fire and weakening my legs! I draped myself over the couch, in pain and such weakness, fearing my legs wouldn’t hold me up. When it finally subsided I soldiered on and let the dog in and then collapsed from exhaustion back in bed. And now I’m wondering “is this my back, or autoimmune? Have the two “married up?” I’ve expressed my concerns and confusions with both docs, and I’ve come to understand that the more they know, the less they know.

So I thought I’d put this long saga out there (there’s so much more, I’m 72 now and realize I’ve had lupus like symptoms here and there since the beginning of the headaches and low energy levels), but I wanted to see if anyone experiences shooting down the legs experiences, little floating muscle cramp things throughout the body. Thank you for your time and listening?

  1. We are always here to listen, and I thank you for sharing your story. It can really help others who relate to hear what you've gone through. You've been through so much with these symptoms and trying to get some answers. I hope others can share their experiences of leg pain and cramps. Is it muscle pain or joint pain, ? - Liz (Team Member)

    1. Hi, Liz! The little spasms/pains are muscles. And there’s tingling too. Before those shooting electric pains there’s a cluster of intense tingling in my lower back, so I’ve come to recognize that was my personal “tornado warning”. Sunday evening I was in the pasture feeding my horse and donkey (both with give me immeasurable pleasure and showers me with feelings of such happiness!) and I felt one coming. I had to lean on a fence post and just hope it wouldn’t be too bad. My sore knees I’m attributing to autoimmune. Funny since one knee is replaced, that’s when I realized it’s not the bone joint, but tissue around the joints (all tissue still mine except that one ligament across the patella...I think). I fell on my knee 40 years ago when I worked at a law firm. It damaged it and 35 years later the meniscus was shot. My other knee and shoulder injuries came from life in the country. I no longer pick up 50 pound bags of horse feed, my grandson helps me out.

    2. you are really strong to work as you do despite the pain. Thank you for being part of our community. - Liz ( Team Member)

  2. You are such a strong person. Your story proves that and I am glad you shared it. It can take so long to firm up diagnosis and decipher whether it's back issues, migraine issues, lupus issues or all of the above in a combination. It's so hard to determine a course of treatment when you can't even pinpoint the main issue.

    I have experienced muscle, joint and sharp pains in my legs. They come and go as they please and my Rheumatologist has chalked it up to lupus issues and phantom pains from when I had shingles. They can really render you helpless and sometimes all I can do, like you, is relinquish to it and get up when I can and rest afterwards. I have found that warm compresses work to quell my pains that come after those harsh leg attacks. I also increase my hydration with water to try and fend them off.

    I know this is hard, but I am glad you are able to come here and find some support. I hope it gets better for you we are always here to listen. ~Racquel~ team

    1. Thank you, Racquel! Shingles, ahh yes. First case of shingles I had when in 6th grade! Three times since (didn’t come up again til I was in late 30’s). The shingles vaccine has definitely helped, but I had a very mild case on my chest when this latest thing started, after the initial weeks of spine injections. I’ve always associated shingles with stress....which means there’s a tie-in with autoimmune, I guess! And yes, my heating pad and I have been having a long term affair😁!

      1. Hi - so glad you've found our site and that it's helped you to learn more about some of the symptoms you've been experiencing. The double stranded DNA test you mentioned (often shows up as dsDNA on labs) could be something that is just recently positive - sometimes it's negative until someone experiences a flare up of their lupus. I have a great deal of muscle pain and the shooting pains you described sound a lot like what happens with nerve pain, so that could be worth exploring. I take anti-seizure meds for nerve pain. Lupus can cause nerve damage in some people. I have also taken Butalbital for migraines in the past and just wanted to empathize with you over the doctors comments about addiction - so many of us are completely able to take medications for pain without being addicted so definitely advocate for yourself! If you aren't taking more than the allowed limit, or taking them when you don't have pain, then you are taking them responsibly - and it sounds like it helps you a lot. I'm sorry you've been experiencing so many symptoms and would definitely encourage you to discuss more medication options with your doctor. I know the medications to treat lupus can be scary - I was really hesitant to take more than plaquenil at first - but I've found that treating my lupus with immunosuppressants improves the quality of my life so much. Thank you for sharing your story. I'm wishing you the best! -Ava, team

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