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Lupus Caused by Multiple Surgeries and Infections and Meds?

ernurseeernurse Posts: 790
edited 06/11/2012 - 8:29 AM in Chronic Pain
Lupus is not my field of expertise. Anyone been diagnosed with Lupus after having complicated lumbar surgeries-infections, necrotic tissue, PICC line IV antibiotcs, many other meds?

I have structural problems and permanent nerve damage to legs from lumbar issues. But, poor balance, confusion, recent seizure, pain in ALL joints both sides of body including upper extremities not just lower, high cholesterol, mood swings, little lesions on arms(looks like I'm a meth skin picker)and now "butterfly" rash across face(which I know could just be rosacea.)

If anyone has been diagnosed with Lupus as a result of spine issues, please tell your story.

Thank you.


  • Don't confuse this with fibromyalgia,don't have that.

    BTW-this week have MRI and find out if I have to have my 6 lumbar surgery in less than 2 years. That would be number 5 to correct the initial fusion operation with BMP complications and too large of hardware, etc.
  • hi my problems with my back pain are according to my neuro surgeon not caused by the structural problems i have going on in my back.

    but trust me the problems still remain and have got no better if not things are worse. mow my neurologist is looking at lupus pernicious anaemia or ms.

    being a nurse like yourself my research makes me think lupus i fit it really well just no butterfly rash on my face although i do have a rash that looks like my face is scratched which it isn't. i am in the process of having all my bloods done.

    i just want to find out whats causing my joint pain back pain fatigue labile moods and just generally feeling like crap all the time.

    have you actually been diagnosed yet?

    good luck

    dawnie x
  • Dawnie-

    No, not diagnosed yet. But after recent seizure and butterfly rash on face, got me thinking about all of my other symptoms and read a bit about it. With surgeries, meds, necrotic tissue surgery, etc. made me wonder if all of these symptoms are actually related. I've been blaming everything on the meds, but even on good days I'm exhausted, my fingers and wrists aches(and I'm a lumbar person.) First I thought maybe 6 weeks of IV meds caused rosacea, but then seizure and I fall all of the time. Have upcoming appts(too many) and will bring this up.
  • i know just how you feel, my problems have extended from pain in my back and legs to general pain all over my joints hence my neurologist testing me for everything.

    its so frustrating i am sure you are the same you just want to get up and feel normal, well and not like you are running on empty it is hideous and i suggest you ask for the blood work to be done for lupus and perniciuos anaemia as the symptoms are quite similar.

    best of luck and i sincerely hope things improve for you i really do

    dawniee x
  • I hope the doctors find out the exact cause of your symptoms. As you know, diagnosing an autoimmune disease is very tricky, and it can take a long time. Do you have episodes of Raynauds? Have you also had low grade fever or pleuritic chest pains? These can be some of the many symptoms, and it is hard sometimes to differentiate between autoimmune diseases without clear definative markers. I was diagnosed as having lupus at one point, and later it was changed to undifferentiated. I had tricky lab work results such as positive ANA, positive anti cardiolipin antibodies, false positive VDRL, anemia, etc. Be prepared to go on a rollercoaster ride when it comes to seeing rheumatologists- it can get confusing and stressful. I'm sorry to hear you had a seizure, it must have been so scary. Please let us know if something is found out because clearly, something is going on with you and it must be taken care of. How has your back problems been lately- have they been flaring up as well? Take care
  • I have Lupus and have had multiple surgeries. I find that the Lupus does hinder recovery. Also nerve problems come with Lupus so are not relieved with surgery. How you find out what going on. It took me over 20 years. But the tests and education is much better now.
  • Thank you for the responses and the support. I have multiple upcoming dr appointments(boy is my social schedule full!) Wed find out if another surgery and next week neurology. It's just something else, what else do I have to do with my time? :) LOL Seriously, I really appreciate the support guys.
  • Hi Ernurse, I don't know anything on lupus, but I understand the frustration and situation you are in right now. So sorry to hear about your fall and seizure. I hope that you will get answers from all the doctors' appointment. Best of luck.

  • Adamapple-

    Have we chatted before? You sound familiar.
  • :) Hi enurse, Im so so sorry you had a fall angie,you are certainly going through and have been this long time now,I really hope you get answers as to whats going on and soon, If you do have to go through another spinal surgery we are all for you, It must be so hard on you angie not just physically but mentally too,and yet you continue to be so upbeat and strong....I remember a time in particular that you were there for me..when I was having issues with bmp[its actually 2 years now since my surgery, I have major neuroligical issues now and am having to decide if to go ahead with another spinal surgery.....i am doing a post after i write this in back and neck surgery]

    I just wanted to take this oppourtunity to really thankyou Angie from the bottom of my heart for all the research,help and information you have given many many people on this site with regards to bmp complications....I honestly dont think I would have been able to keep my gut feeling that something wasnt right without referring back and reading up on the bmp issue,and for that THANKYOU ENURSE :) ,Im sending you gentle hugs >:D<,thinking of you,and saying a healing prayer for you today.
  • oh enurse that was actually going thru alot and we are all here for you lol just read it there..............silly me im not awake yet lol
  • oh enurse that was actually going thru alot and we are all here for you lol just read it there..............silly me im not awake yet lol
  • Did you have a seizure from a high temperature? I'm sorry you had a bad fall. It seems like you need some answers. Did they do a head ct or MRI after your fall and seizure? I hope they find out what's going on. Take care of yourself. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Hi Ernurse,

    is there a possibility that you could have RSD(RCPS)?

  • It was probably 18 years ago I had diagnosis for (with) Lupus and was treated for it for over year.On one of my monthly appointments I actually had to see a different rhumy(the same rhumy I have today)after some test and another appointment the next day they said I did not have Lupus.. I could not believe it,and I remember being treated with Mega-Mega Doses with salsalate(which is asprin, and I cant remember the other meds name. but I was being diagnosed with a type of lupus (I think there is 2 types -I could be wrong -I'm just tryin to help that effected organs and the arthritis,(I believe)I had no rash back then,(do you understand what I mean when I say the other type of lupus) and I have forgotten alot of the things during that time during my life, I do remember having fluid drained off knee twice I had alot of inflammation in many places and high R.A. factor, lots of x-rays of lungs and many ultrasounds done.And to this day one blood work up will come back high for R.A. and 2 months later it will come back very normal (even thou today as I type I have the butterfly rash that would go with lupus. (could we both be on the same med that could be causing this? just thinking)I usually have pretty good skin on my face so I'm thinking this rash on my face, has to be to do with my meds.
    also this is so strange but on 4-7-09 just one week ago I went to Dr.he did look at my face and actually touched it(sounds weird but that's what he did)I had not mentioned it to him or nothing he did this on his own.
    now approx. 2years ago I got diagnosed with possible M.S.many many brain MRI's-spinal tap -the whole nine yards Dr.s thought (some still think)that's why my balance was bad and before long could not walk on my own..finally they take another full body MRI and find the mess in my neck and find c6and7 disc half way through my spinal cord not to mention everything else going on in there. I had surgery Feb4th and there are more than one Dr. that still think I may have M.S.(I DO NOT think I have m.s. for one minute)they say usually spinal cord compression would more likely stay in the upper half (arms)which I have.And not in the lower.(legs)as I have.I feel in my heart and my knowledge that myeolpathy can cause paralysis in the legs so I don't understand the Dr.s(not the first time)
    I take High dose of neurontin 3600mgs a day. new in last 6 months.
    1mg to 2mg of klonopin 1 to 2x's a day. new last 6 months.
    I also take ultram 100mg 3x's a day for years.
    I'm off my pain med given after surgery.
  • I am an operating room nurse and can relate to how we try to figure these problems out on our own as well. I have recently been having some neuro effects that are new. I get these drop attacks where ifeel like my cns is going out of control and do not lose consciosness but feels like almost. My heart gets tachy, my extremeties get numb and weak. I was actually hospitalized for 3 days last week because I had about 5 of them in a 2 week period. My short term memory had gone south, balance, coordination bad as well.Tinnitus and some blurry vision at times They did all kinds of brain scans etc with no findings other than the cervical stenosis I knew I had and some collateral cerebral artery blood flow findings( interesting and news to me).

    I had recently recieved an esi at the end of feb which they used depomedrol this time instead of the usual steriod, as my pm doc said it would last longer. I noticed about 4 days later I was having neuro issues as if I had a stroke. I started to investigate about the depomedrol(which is not even fda approved for esi's and not recommended for them even in the package insert) and found that it is actually neurotoxic and usually used in the lumbar spine and not the cervicl spine.These docs are using them "off label" and I do know that during spinal surgeries they will pour kenalog in the wound before closure. This drug as well as histories of multiple surgeries and procedures can cause spinal arachnoiditis. This is what I was concerned about in the hospital but they supposedly ruled it out. I still have some lingering neuro effects and am trying to figure out what the heck is wrrong with me.

    I am also looking into lyme disease as my dog had recently been diagnosed with it and there can be neuro effects that paralell some of my symptoms. Just some more things to investigate.
  • approx... 3 years ago i was spose to have series 3 epi's in cervical area. after 2nd shot I stopped and never had 3rd shot. my neck did feel better for short time and headaches lessened but day by day swallowing prob. started eventually
    the swallowing got very serious and could not swallow. meds were given by shots and patches. I have swallow problems to this day that are much much better but i have learned how to swallow my way plus it did get better. i have been through all the swallow test and every thing else you could imagine to do with all this, and I have no gag reflex and slow digestive issues that cause loads of prob. but I have learned to live and deal with this. I know in my heart and soul that this was all caused from the epidural shot. because I know when it started and can totally relate it to the shots in my neck.I will stop here.....

    Has anyone out there ever heard of something like this happening?
  • Thank you for all of the responses. Yes, arachnoiditis has been mentioned. I fall every day, lose my balance even if not taking meds, no short term memory. Feel like I've dyed my brain blonde!!!! :)

    I am certain that the seizures were caused by falling and hitting my head on the hardwood floors. I was taking phenergan and zoloft at the same time, phenergan makes me dizzy, the combo can lower seizure threshold. So while I do not have a seizure disorder, I think it was a "perfect storm" of events that made it happen.

    It's amazing what you find out later-what's been used off-label and you did not consent to off label use.
  • I sill think if you had a seizure you need a brain CT. As an Er Rn also we tend to downplay our own symptoms and if they suspect MS they would also do some more testing. But I'm sure your Specialists will do the right tests hopefully.Lupus does get the butterfly rash I had a patient who was one of our Radiologists and she had that. BUt even pregnant women get the ras but not all. Anyway I hope you're seeing all the right Drs and getting the right blood tests. Maybe an Endocrinologist also. I hope you get some answers soon. Take care. Cherry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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