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Sh33na
10-05-2007, 02:30 PM
I'm having to rethink everything now that I have a Lupus dx.

Has anyone had surgery and had flares because of it? I am having shoulder surgery on Thursday, just an overnight stay.

I've had really bad flares before after surgery, to the point where I could not walk. I always assumed it was my fibro playing tricks on me, but it is rare that I can't walk at all with the fibro. The stress of surgery can sure throw me into a spin.

Now I'm wondering if it isn't the Lupus and/or RA instead of Fibro, and wondering if there is anything I can do to help prevent such a bad stretch.

My rheumy is holding off on starting new meds because I am going to have several surgeries in the next year and he doesn't want me to start/titrate up/stop/start over. Cortisone is out, also, because I want to heal.

If there is anything I can do to prepare, I'm there. I'll be without my dominant arm for several weeks, so I would like to keep the rest of my limbs working if possible!

Saysusie
10-05-2007, 09:42 PM
Physical stress can certainly affect our Lupus and can even predispose us to flares. Surgery is an example of physical stress. Surgery is a big undertaking in people with lupus and it is usually recommended that the disease be well controlled prior to any surgery in order to make the procedure as safe as possible and to increase the likelihood of a good result from the operation. I would say that the best way to prepare for you surgery is to do all that is possible to get your Lupus under control. There is probably no way that you can avoid the stress, but if your disease is managed, perhaps the stress will not have as much of a devastating affect.
Otherwise, you might be well served to find ways of alleviating your stress since it seems to cause so much problems after surgery. :lol:
I wish you the very best.
Peace and Blessings
Saysusie

Oluwa
10-16-2007, 12:59 PM
Hi Sheena,

How did the surgery go...still one arming it for now. Sending you get well prayers and wishes...

I had flared like a lite safety flare in the middle of the ocean after my last cervical spine surgery. I hope Lupus didn't seep in after yours. Post when you can...keep the stress at a low. I hope you are resting and eating well...

Till we read you again...hope you are feeling wellness today,
Oluwa

Gisèle
10-16-2007, 02:11 PM
That is odd that lupus can flare up after a surgery. What does that feel like?
I got a surgical procedure done three weeks ago, and the next three days following it was an absolute nightmare. I felt so sick, like I had an awful case of the flu, and I have a fever(upper 99 range.) I was extremely nauseaus. I could barely walk without feeling like I would pass out. I felt so sick I couldn't turn around in bed without making myself feel worse. I really thought I would faint. I couldn't even get out of bed to do simple things, like brush my teeth.
I have attributed all of that to the meds I got after the surgery, which was primarily morphine, but the side effects of morphine is only the nausea part. I am definitely going to bring this up at my doctor. I didn't know this.

Btw, I hope your surgery went well!! Feel better! :D

Oluwa
10-17-2007, 04:39 PM
Gisele...Hi,

I want to say first, welcome. And how are you feeling now? Are you alright? Meds can do a number too. Fever after surgery isn't good. Could have meant an infection.

Surgery, stress on the body equals a situation for a potential flare. Certainly a breeding ground for one. The flare after my surgery was potent...first it toyed hard with me for 4 months then it brought me to my knees for almost 7 months. And these last five months I have been putting up a good fight with it. I am just coming back to feeling as whole as I can get. I give lots of thanks all around for finding this forum. It helped me...more than anyone knows.

I knew no one prior with Lupus. When I read others, I had seen me. The compassion I have for others, I learned how to have compassion and empathy for myself. I realized this within myself..it doesn't matter who understands the way I feel outside this forum. What is important to me is that I understand how they (outside this forum) feel. Lessened my stress bunches. Lupus affects everyone I know, through me, who doesn't have it. Stress, awkward, helpless, avoidance, worrying and etc. My experience is mine, and no matter the metaphor or the analogy I used to explain they will never feel like me. Nor I of them. So, to me, it is not important for them to know how much I ache or how exhausted I am and that is good. It is all good. Life is good.

Oh, gee..went way off for a minute...okay..what does it feel like..it went something like this. Desperation. Oh girl, I couldn't walk..felt like walking on marbles and stones. I felt I was set in cement. Couldn't hold a toothbrush to brush my bucks. Weak...weak like a newborn trying to hold her head up. Depressed. Every single joint, jaw to elbow to toe ached with great pain. All muscles inbetween. Crown headaches. Basically I felt like a carcass, dried up. I felt like I was a soul toting a carass. I would say, I felt closer to dirt than a dancing floor. Felt like I was swallowing raw bread dough. You know, the usual Lupus symptoms. I have Sjogrens too. Well, that about sums it.

Again, welcome to a wonderful group of people and all right at your finger tips too. How great is that... Much.

Sweet Dreams,
Oluwa

Gisèle
10-17-2007, 07:06 PM
Hi Oluwa!
I am feeling not the best, but nothing like those three days after surgery, although a week ago, for two days, I felt somewhat like that, but not as bad, but that's when I developped the joint pain and headaches, and ever since I have had all of that on and off, everyday! And this is all in addition to the inflammation I have in my urethra, bladder, and possibly heart/chest.
I was wondering about that fever, but I didn't think infection, because I was given antibiotics during surgery, and put on levaquin for a month afterwards. It makes me wonder why I felt so bad for those three days, I am definitely going to bring that up when I see a rheumatologist.
And it sounds like you have had your battles, too. :( I hope you are feeling better!!
Btw, I love your avatar!

Oluwa
10-17-2007, 07:29 PM
Hi Gisele,

Even though you are doing alright... be kind to your body, your joints, pace yourself..avoid stress, eat well, gentle exercise to help keep it from coming back like those three days you had. It maybe waning or waiting to seize the opportunity.

Sick or feeling well..keep the routine and don't run yourself ragged. I learned the hard way. You want to keep some reserve for tomorrow.

Yep, mention it. Every detail is important.

Sorry that you have Lupus and all it's cronies too. I wish you much wellness.

My bedtime has arrived. Night.
Oluwa :sleeping:

Gisèle
10-17-2007, 08:59 PM
Hi Oluwa!
:oops: Sorry I wasn't more clear on my posts, but I haven't been diagnosed with Lupus, yet. But that's currently what my doctor thinks that I might have, she doesn't know what else it could be and I don't either, but my first ana/lupus test came back normal, but a blood test before that showed low wbcs, etc. I have a few appointments from now until the end of next week, so hopefully there will be progress and I will get some kind of diagnosis, at the very least, some treatment.
Hope you are feeling well!! :)

Oluwa
10-18-2007, 04:12 AM
Hi Gisele,

Even if you don't have a diagnose, being symptomatic you can still care for yourself as if you did.

Also you can have a negative ANA and still have Lupus. Have you met any of the 11 criteria. Four is needed. Are you aware of what the 11 are? Lupus is a cumulative disease. All symptoms may or not be felt all at once. Some symptoms take years to develop that is why it is such a long process. Not a happy thing to be on...the roller coaster.

Your doctor can still treat your symptoms, without an actual diagnose. Are they?

Have they suggested..
Light exercise.
Balance diet.
Control the stress.
Sleep, rest, nap inbetween.

And know, even though you don't have a diagnose, girl..I still feel bad you are not well. The unknown, the chronic pain...it is difficult. So, my last post with the advice is still recommended.

Have you sought out any books on Lupus. The Lupus Book 3rd Edition, by David Wallace is a great start. Check it out.

Thank you for loving my avatar. Feels like me.

Keep finding your wellness,
Oluwa

Oluwa
10-18-2007, 04:12 AM
Doubled posted for some odd reason. Hiccup? Dejavu? I deleted the repeat.

Oops,
Oluwa

Gisèle
10-18-2007, 05:56 PM
Thanks, Oluwa for all the advice, I am going to follow it!
For the 11 criteria, I meet a few of them. I do have the oral ulcers(I got one when all the rest of this started, and I just developped one today on the roof of my mouth), arthritis(if this joint pain, redness, and stiffness is that), I might have pericarditis(got tests today, getting results tomorrow or monday), I had the blood one because at one point a few weeks ago I had low wbcs, lymphocytes, neutrophils, for the kidney problem that is in question at the moment as I do/did have protein in my urine and there was some abnormality seen about my kidneys but that's not for sure yet we have to see what my urologist says, and I don't know about the immunological disorder as I didn't get half of those tests yet. And I am not sure where tissue/organ inflammation falls into one of those 11 categories.
And that's a perfect way to describe the situation, a roller coaster, and I am ready to get off of it. :lol:
My internist hasn't treat any of my symptoms, the only treatment I am getting is for the bladder and urethra inflammation, but it's Urised pills to help with the pain and it is effective for only about a couple hours. Next week, I am going to ask my internist for something to help with all of what I am experienceing. And no one mentioned any of that, except my internist gave my a list of foods to avoid that irritates things more, but I don't eat most of those foods anyways. So thanks for giving me those helpful hints, I am definitely going to go with them.
Thanks for the book recommendation! I am going to look at that book and some others. The only research I have been doing is on the internet and my mom has been reading some medical books that she has.

Thanks for everything! Stay healthy!

Oluwa
10-19-2007, 07:44 AM
Gisele, Hey...

You are very much welcome.

Keep a journal of all your symptoms so you can be diagnosed promptly. No matter how small the detail maybe. When they occur, type of symptom and what may have triggered it.

It will be a great reference for you and also a tool for your doctors. Get tedious after while but it will help you to remember. Creating less stress too in recalling.

My foods I avoid. Sugar, sugar subsitutes. Splenda is fine. Wheat, peanuts. Preservatives, food dye yellow 5.

Let us know on your test results.

With the mouth ulcers avoid hot drinks, use cool water too sooth. Check the drug store for OTC nedicine to treat them. Do you take any vitamins, such as C or B..zinc? These maybe help in prevention. If they last more than a week make sure your doctors treat them.

Anything prescribed for arthritis? If not, try an anti-inflammatory. Motrin. But you should check with your doctor before self dosing.

Are they treating you for protein in your urine?

Getting a diagnosis is hard..hang in there. Treat yourself with care and to enjoy things..have fun as nnuch as you can. Don't let the pain, the unknown isolate you.

Hugs,
Oluwa