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Discussion Starter · #1 ·
Where do I start? I am sitting here in tears as I type this. I guess I need to vent and ask a few questions... Here goes... It is difficult to compose this as my mind is missing in action, most of the time.

It all began in 1993. I woke up one morning and my back was out. I had a fall about 3 months prior to that, but seemed to be ok. I went to the emergency room in severe pain that day and was told I had spondylolisthesis, basically a birth defect as they called it. I was in my 30's and never had a problem like that before. They said the fall had nothing to do with my pain or condition. They gave me pain med. and said to lay on the floor for a week. Well, I did that and the pain eased up some but never went away. I became accustomed to the pain and went on for 3 years until I could barely walk. I tore my stomach up with all the Aleeve I took everyday. I ended up in the hospital having lower lumbar back surgery with rods and screws . It turned out that my back was fractured all that time.......... I think that is when the "Lupus-Beast" came alive in me and no one knew or bothered to look... I have never been the same since.

Six months later I end up in the hospital with severe lung problems, twice.. They said it was Asthma. I had never had Asthma before.
Six months after that I need more back surgery, because the "JOINTS" in my back were causing a compression. Oh, and all this time I had a red rash on my face that they called "Rosacea".

Next few months, my hands and feet start turning red, white and blue. They tell me it is Raynaud's Phenom. due to the hardware in my back. Don't worry about it and just dress appropriately in the cold. Me, I was clueless, didn't have a computer then.

Next thing, I get high blood pressure, gastric reflux,nasal polyps and severe fatigue. Not to mention body aches the whole time. Back has never stopped hurting, but at least I could walk..

Four years ago I wake up with a crick in my neck that would not go away. Doctor tells me it's a little bulged disk. It kept getting worse, I kept getting worse. Last year I ended up at my doctors office like a crazy person, I could not stand the pain throughout my body. I insisted on every test known to man to be ran on me, complete profiles of everything. Two weeks later I am told to go see a rheumy, my ANA was positive. I got diagnosed with Lupus and Fibromyalgia and was put on Plaquinel.

The plaq. has helped my hands, knees and ankles, not my spine. I started 6 months ago with headaches, my head tilts to one side due to my neck and my back kills me. Had an MRI that looked horrible. Saw a spine specialist today and was told my vertabrates in my neck have collapsed and my hardware in my back is unsteady and a complete mess... I need a Myelogram of my full spine. I had a myelogram 12 years ago, and it was like a form of torture. I am so scared to have this test.

Has anyone had one in the recent past? Also, is anyone having these severe spinal problems? I feel like I have spinal lupus, is there such a thing? I don't know what to expect, the dr. said there are several things that need to be done, but he needs the test results asap. I am so sorry to have went on and on like this. I have never put my story into words like this before. I feel a little less depressed getting this off my chest. Thank God for this site.
 

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(((((Mary Ann)))))

It sounds like you are going through a terrible time right now.
I'm sorry I haven't got any advice for you, but I just wanted to say that I am sending you lots of love and hugs.

Please take care

Elle x
 

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Hello Mary Ann, I have no particular knowledge of lupus affecting the spine, but what you are going through sounds pretty nasty. I am glad you managed to write it all down. I hope you are able to get really good treatment.
We are always here to listen. Oh and Well Done on insisting on being tested and discovering the Lupus and Fibro. (I have these and a few other interesting bits,so I can sympathise)
x Lola
 

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Mary Ann ... big gentle hugs to you honey!!!!! Sorry that you are in so much pain right now. I hope you get some pain relief soon and get your lupus under control. I went thru a period of intense constant pain that no one knew what to do about, it is very scary and discouraging to say the least. Hang in there ... there are people who care and understand
 

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Mary Ann,
I am so sorry to read of your many, many painful challenges. Lupus is enough to drive one nuts.
I have never had the test you mention (and pray I never will!) but I also hope that if you have it that something very good for your treatment will come out of it.
Many blessings.
Douglas+
 

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Mary Ann,

I have not had the trouble you have had with your spine but I do have lower back pain a lot. I found not much helps but the pain pills. I am sorry that you are having such a hard time, but at least they have a name for it. It will take time to get you feeling better and time to sort it all out as to what is wrong. In the mean time I would like you to consider asking for a antidepressant. It will help you with the mood swings and keep your head clear so to speak. I thought the doctor was crazy when she said I should be on them. I took them and what a change in my mood. A side effect seems to be that I am a chatter box.

If you ever need to talk just message me or email me, I am here for you. I may not be able to help much but can listen to you.

Tammy
 

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Mary Ann,

I am also not one to offer any advice on this test as I have never had one done.

I would suggest you talk to your doctor about a pain pump that I think would work much better for you compared to oral pain meds.

I am sorry your dealing with so much. I also do not know if Lupus can effect the spine but I do know a lot of us deal with daily back pain.

I sure hope you get some relief soon. My heart goes out to you with all your dealing with. Do you have family and support to help you through all of this?
 

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Discussion Starter · #8 ·
I want to thank each and everyone of you for taking the time to read my ranting. Your words of encouragement is just what I needed.
Sincerely,
Mary Ann
 

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Dear Mary Ann,

I am sorry you have been through sheer torture. :(. I hope, that your future is less painful, now that you are under treatment for Lupus. Thank goodness, you were so insistent on getting the right tests done.

I agree with Karol. Maybe, since your spine is so badly damaged. a pain pump would help you, much more with your pain.

Do you see a pain specialist? They are almost a necessity, after undergoing everything you have been through.

God bless you, and please come here and vent whenever you feel the need.

Love,
Sandy
 

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I hope they have improved that myelogram procedure, but if they do still anticipate it to be painful then tell them of your fears of this procedure and see if they can "knock you out" to some degree with anesthesia or extreme sedation ;)

Lupus very rarely affects the spine, in fact it almost always spares the spine. I'm afraid that you have a few different things going on all at the same time...

Good luck with the procedure and hope they can make it much more comfortable for you this time.
 

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My heart goes out to you. You've been through **** and back with no relief. The only thing I can tell you is a close friend had a myelogram two years ago for terrible leg pain and she said the test wasn't too bad. It could very well be that they've made improvements on it since your last one. Be sure to tell them of your terrible experience last time and the pain you're already dealing with. They should be able to help you somehow. I hope you find the answers you need.
 

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Discussion Starter · #12 ·
Thanks for all of the advice and well wishes to all of you.

Sage, I have not been back to the pain specialist since the epidural block, which did not work for me.

Maia, I hope the procedure has improved through the years, even just a little would be nice.

Jeesse, thanks for giving me hope with your friends experience.

I will post all about it after I have it, I'm sure. This test is going to give them insight as to what will be done to my spine, said the doctor. I guess I don't really have a choice, I have to have it.

Thanks again,
Mary Ann
 

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:there: I'm so sorry for all that you've gone through.

we're all here for you now!:grouphug2:

On a good, not so good, slight note..a Myelogram cannot be done without anesthetic so that might be better than the one you've gotten before!

and please post other findings! we're here for you and know how hard life is most of the time :sad:

good luck on all of the tests you are going for~
 

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Discussion Starter · #14 ·
Thanks for the reassurance, Mosh. The test got pushed back to Monday of next week, with results to follow on Thursday. I will post the findings.
 

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Discussion Starter · #16 ·
I got the myelogram on Monday. It was terrible. They would not give me any anesthesia because they had me stand and flex during the test. It was quite painful. I am still hurting from it. I go to the doctor tomorrow for the results. I almost didn't get it done, when they told me, no anesthesia. How barbaric is that? Oh well, back to bed. I hope everyone doing better than I am......
Mary Ann
 

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Mary Ann, I'm sorry you had such a difficult time. It sounds awful. You must be so relieved that it's over. I'm hoping the test will have been worthwhile and that you get the information you want. Please keep us posted.
 

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MaryAnne - you have my sympathies. I'm a coward and there are several tests I don't think I will ever have done because they claim they cannot put you out for them. I wonder how many of these doctors, therapists, specialists or nurses have every actually HAD those tests themselves.

Good luck with the results, I hope they come back with something that can help. I know I have a desicated disc and I'm convinced it was the year without more than 2 hours of sleep that followed it that caused my Lupus to show up as well.
 

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Mary Anne,
I am sorry the emg was so miserable for you. I've had several done on my legs, feet, and arms and hands, peripheral neuropathy-lupus induced, and have never been able to receive any anesthesia as that would change the nerve conductions and their response. The last one I had lasted 3 hours. I was sore for weeks it seemed.

For what it is worth, I do not hold much faith in pain specialists. The lack of faith in recognizing that the patient knows what they are feeling, does not lead me to put much faith in their opinions. I would say that you know what your body is feeling, therefore you will be the best judge of what is happening to you. Not, someone who "thinks" they know all about pain, esp yours.

I have cns lupus which causes migraines. I found that plaquenil caused my migraines to get a lot worse and frequent. You might ask your rheumatologist about it, and see if you should give a few days off of the plaquenil. If you are migraine free during those days, and have one right after you start again, you have your answer. That was how I found out the trigger for me. I ran out of my med, and didn't get to the pharmacy for a few days, and during those days I was migraine free. I got my script, took one, and within an hour had a massive migraine brewing. It was the last one I took. I've known others with sle who had migraines and talked it over with their doctors, and on a few days off, were head ache free. Once they started again, ha again. So, run it by your doc on your next visit. In my opinion no medication is worth the cause of a migraine.

Good luck with the variety of issues you have to deal with. I wish you a Merry and blessed Christmas
Sally
 

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Discussion Starter · #20 ·
Thanks to all, for your support. I needed it and will need more.:(

The results of the test were as bad as the test itself.

I need major neck surgery. Three vertebrates removed and four discs removed. they will implant donor bone struts in the front of my neck and a plate in the back. It will require front and back incisions. I will be on a ventilator for twenty four to forty eight hours after the surgery. YIKES!!!!

It will have to be done soon, because there is spinal nerve root and cord involvement. C3 thru C7 are completely collapsed. That explains all the pain I have been going through. Having Lupus does not help as it makes our connective tissues more delicate and furthers my Degenerative disc disease along. My husband and I are very stressed about this.

Good news is the doctor said I will feel a big improvement immediately after the repair. So, I guess that is the light at the end of the tunnel.

Happy Holidays,
Mary Ann
 
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