Autoimmune flare after surgery?

Hi ladies!

I was wondering if any of you who have autoimmune problems have experienced a flare-up of your symptoms following your hysterectomy? I only seem to have put this together last night as I lay tossing and turning trying to find some comfortable position. Every muscle and joint I own aches right now and I've been noticing the same dull ache around my kidneys and upper back I haven't felt since my last episode. I'm beginning to think that's the reason for the edema in my legs too. I'm guessing that the vicodin I was on just masked the symptoms until I started to wean myself off of it (I'm not taking any pain meds now and haven't taken any acetaminophen since 11-1). Anyone else? I'm thinking of asking the gyn if he can run some antibody tests when I go see him on 11-9 because there's no way I could get in to see a rheumatologist that quickly since I've recently moved to a new city and would be starting from scratch. All I know is that the last rheumy I went to said he suspected lupus but wanted to wait for "signs of organ failure" before he'd call it as such and for now I'm deemed to have an undifferentiated connective tissue disease. Needless to say I didn't really care for his bed-side manner.

Sorry for the long post! I'd appreciate any advice you could give. Thanks.

Hi Selene~
I wondered as such as well. I'm only 1 week post-op and still on pain meds, so no flare up. I'm still taking my anti-rheumatism meds though.
Definitely make an appt to see a rheumy as soon as possible though. You shouldn't have to wait til organ failure to be dx w/ lupus. There are several different types of lupus and several different body systems that lupus effects.
I know it takes a very long time to get in to see a rheumatologist. If you have a PCP who can refer you to a rheumatologist, sometimes that can get you in a little faster.
Best wishes to you.
Take care of yourself.
Don't too much and don't let yourself get too exhausted - all factors that lead to a flare up of any autoimmune disorder.

(btw - I'm a massage therapist who specializes in chronic pain, and I live with psoriatic arthritis and celiac disease- so I understand your concerns)

Feel better!

I too have an "connective tissue" disorder or lupus depending on what specialist I see. Please do not wait until organ failure to get diagnosed- glad you moved to get refferal to new rheumatologist.
I also experienced a "flare" after my hysterectomy around the 5th week. It was debilitating pain and swollen joints. I was unable to take the cellcept due to infection so I was put on a burst of predisone. This helped me tremendoulsy. I was able to decrease the sevrity of the flare up and able to move better. I did not return to wrok until after the 10th week post op. I still am fatigued and swollen yet not like i was in the midst of the flare up. My rheumaltologist and gyno. share my opinion that any major trauma to the body can cause a flare up of anautoimminune disroder.

The fact that you have swelling and kidney area pain could just be surgery related, but I would not mess around and would call my doc (even if it is nighttime), whether I had autoimmune history or not.

Let us know what happens.

Take care,

Well guess what! I saw my rheumy and PCP on Monday and saw my gyn on Weds. Rheumy called me on Tuesday and said my SED rate was up. We debated if this was due to the surgery or a flare up, but I will retest in three weeks. My gyn thinks it's more surgery related, but he did say that any major trauma to the body could cause a flare up.
So later in the day, I had that body ache feeling- you know the one - and gosh darn it, the joints started hurting and BAM... flare up! Ooomph!
My gyn explained to me that my recovery from my TAH is much different than recovery from a c-section b/c this time around I have the auto-immune and inflammatory diseases. No wonder why! Here I thought I was just a major wimp!
I made the switch from the motrin the gyn ordered post op back to my etolodac (Lodine) and I can tell a difference. My gyn explained that the Lodine is a much stronger anti-inflammatory and I'm so glad he explained that to me.
The Percocet was doing nothing for me for pain, but when I took my Flexeril (muscle relaxer) I did get some relief.
Funny how innate wisdom kicks in and it was just what the body needed - the dr's just needed to catch up, or in my case, I needed to take a few extra minutes asking all of my 'why' questions to any doctor who could answer my question as thoroughly as I needed.

btw- I'm now 2 weeks post-op and I got clearance to get a massage (not too deep) and I can also do some aquatics - so I've signed up for the arthritis aquatic program where I work. It's much easier than trying to land classes - at least the water is more gentle.

yep, I have RA and I guess fibro too as I have had a fibro flare since 2 weeks post op- I have nerve pain in my hips and side of my thighs, and burning skin on my arms. Ugh...This has not been an easy recovery.

hugs and prayers!

Hi ladies!
Sorry for the late reply! Thanks so much for sharing your own experiences and advice! Thankfully, the pain near the kidneys and water retention has gone away--I have Hashimoto's thyroiditis along with the UCTD, so I'm guessing that was part of it. I'm still a bit achey, but not as horrible as before (or I'm used to it by now, hard to say considering my last flare lasted 3 years). In retrospect, I had gotten some sun the day before surgery and the rash from that lasted the better part of 2 weeks when it would normally only last a day. That could only have contributed to the flare. I hope you all are feeling better soon! I'm still trying to get a new rheumy who specializes in lupus. I'll let you know how that turns out. Take care!

-Selene

	Quote:
Originally Posted by selene Hi ladies! Sorry for the late reply! Thanks so much for sharing your own experiences and advice! Thankfully, the pain near the kidneys and water retention has gone away--I have Hashimoto's thyroiditis along with the UCTD, so I'm guessing that was part of it. I'm still a bit achey, but not as horrible as before (or I'm used to it by now, hard to say considering my last flare lasted 3 years). In retrospect, I had gotten some sun the day before surgery and the rash from that lasted the better part of 2 weeks when it would normally only last a day. That could only have contributed to the flare. I hope you all are feeling better soon! I'm still trying to get a new rheumy who specializes in lupus. I'll let you know how that turns out. Take care! -Selene

Hey- so, since you also have multiple auto-immune disorders, do you have, by chance, any gluten intolerance or celiac?
Just curious- cos I just happened upon this earlier this year - allergic to gluten and corn products.
So, last night, I accidentally had something with corn starch in it (thankfully it wasn't gluten b/c then I'd REALLY be a mess) and I did have a reaction- which for me is even more swelly belly- tummy distention.
unfortunately, nothing can be done about it b/c once the inflammation occurs, not even benadryl can stop the reaction. I had been concerned about what would happen if I became glutenized and the bloating put too much pressure on my incision.
well
it did
it wasn't as bad as usually is, which is good, but it was bad enough that I was hurting quite a bit last night. The skin higher than my incision had become so swollen that the skin hurt. I used ice and my low back binding brace - that helped a little, but OMG I was not a happy camper.

I think a lot of ppl in my family were hoping that the hysterectomy would have solved my gluten intolerance - as it is quite an inconvenience for them. I knew it wouldn't, but they were hopeful. I've become comfortable w/ my adaptation to being gluten free and corn free, but I was rather curious if anyone else in this particular community has had an issue with this.

perhaps I should go create a celiac/gluten intolerance thread in here. hmmmm... time to ponder.

Well, I was tested for celiac disease a few years back but nothing turned up (that rheumatologist truly had no idea what was wrong with me and ordered a bunch of random tests that didn't even fit my symptoms at the time). I do have a "touchy stomach" and always have--I can be the only one out of a group of people to get sick from what everyone else was eating. I'm always really careful about hand washing having worked in a hospital lab years back and having taught microbiology to nursing students. I can only assume that having the autoimmune issues must make me more susceptible to bacteria and mild food poisoning. The things I've gotten the trots from are completely random and don't seem to share anything in common as far as I can tell. Kinda sucks because I never know when my GI tract is gonna pull a stunt on me.

It would be interesting to see how many others have GI issues along with autoimmune problems.

I sure hope your tummy is feeling better soon! That's gotta be pretty wicked with the bloating from the inflammation on top of areas that are healing. I swear any kind of gas is the worst to deal with after surgery. I had adhesions from an old appendectomy that had glued my intestines to my right ovary that they had to cut away, so my right side is still really touchy depending on what I eat.

Take care cynth11 and I hope you're feeling better soon. Let me know how it goes!

	Quote:
Originally Posted by selene Well, I was tested for celiac disease a few years back but nothing turned up (that rheumatologist truly had no idea what was wrong with me and ordered a bunch of random tests that didn't even fit my symptoms at the time). I do have a "touchy stomach" and always have--I can be the only one out of a group of people to get sick from what everyone else was eating. I'm always really careful about hand washing having worked in a hospital lab years back and having taught microbiology to nursing students. I can only assume that having the autoimmune issues must make me more susceptible to bacteria and mild food poisoning. The things I've gotten the trots from are completely random and don't seem to share anything in common as far as I can tell. Kinda sucks because I never know when my GI tract is gonna pull a stunt on me. It would be interesting to see how many others have GI issues along with autoimmune problems. I sure hope your tummy is feeling better soon! That's gotta be pretty wicked with the bloating from the inflammation on top of areas that are healing. I swear any kind of gas is the worst to deal with after surgery. I had adhesions from an old appendectomy that had glued my intestines to my right ovary that they had to cut away, so my right side is still really touchy depending on what I eat. Take care cynth11 and I hope you're feeling better soon. Let me know how it goes!

tee hee - forgot about that saying 'got the trots'.
yup - just had the trots

from my celiac research online, it tends to come w/ ppl who have multiple auto-immune disorders, which is why I posed the question.

I have an AMAZING TMJ specialist who looks at me as a whole and he noticed that I had a distended abdomen. He suggested I try the Atkins induction diet for 2 - 3 weeks. It wasn't til I started feeling so amazing that he told me is was more of an elimination diet to find out what I was allergic to rather than a weight loss plan. Once I got processed food out of my system, I felt AMAZING. Then I realized I was allergic to wheat and corn... and thus the journey began.

yeah- it was quite an interesting experience in the hospital to make sure they didn't give me stuff with high fructose corn syrup or wheat in it. I don't quite understand how a hospital could even have juice that has high fructose corn syrup in it, but that's the mighty dollar at work again.
Imagine my surprise when they kept sending me broth (which contains gluten) and then, get this, GRITS (which is made from corn). Fortunately, hubby brought me my own icy treats which were clean and my own apple juice. I even had to make sure they didn't give me the wrong IV, as many are derived from corn, esp dextrose saline.
It was definitely an experience.

I guess on the good side of today- I didn't have any strain while going to the bathroom today