Lupus AFTER Gastric Bypass surgery

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Achy~Achy~Body
New Member


Date Joined Apr 2011
Total Posts : 2
   Posted Yesterday 8:29 PM (GMT -6)   
 

 

Hello, my name is (here) is Achy.  For years I have suffered from aches and pains, all over my body.  Fatigue was a major issue, single mother of two teens, thank God for their help.  The Lord blessed me in 2005 with a wonderful man who is now my wonderful husband.  At time we met I was 225 lbs, and I'm only 5'2".  Trust me, my husband is a looker too.  He was driving his dune buggy to work one morning and this woman literally followed him to work to talk with him.  Can you say psycho!   Anyway, in the first 2 1/2 years together, things were good.  He often would force me out of the house to go to fun things.  By the end of the day, I was exhausted.  Pain, pain is all I knew, but I didn't want him to think he caused me pain.  To make a long story short, in 2008 I scheduled a trip to the doctor regarding the all-over pain and fatigue.  After 15 vials of blood (I swear, there must be a nest of vampires nearby, I have to go get blood drawn almost twice a month, on rare occasions, I might get lucky with just one time in 30 days) my doctor gave me the news that I had Lupus.  Then came more blood work, now Lupus, I am told was primary and Sjogren's is secondary.  At 225 lbs, I figured dropping some weight might be beneficial.  At that point, I hurt, and was tired, but I still managed to make it to work every day, Get out and do things with my children when they were home.  Dieting was always a problem with me, I do not have any willpower, and therefore, I opted for the gastric bypass surgery.  That surgery occurred 1 1/2 years ago.  I have lost right 120 lbs.  One would think the pain would have lessened.  NOT.  In fact, the pain has become worse; I have also been diagnosed now with Fibromyalgia.  Before the gastric, I really never had flare ups, now, I have them every so often.  MY old boss created A LOT of stress on me; she was out to get me fired.  I was stressing over that, both of my children being in Iraq and Afghanistan, etc.

 

I was out a lot during that time with my ex-boss, in and out of the hospital.  Since she has left, I have a wonderful new boss and my kids are back home.  I am really not suffering from stress, except from the pain. 

 

Is it possible that the gastric bypass has caused my flare ups to occur more often and more severe?  The following is the list of medication that I have been on for 3 1/2 years now.  Plaquenil, Methylprednisolone, Nexium, Hydrocodone Elixir (because the tablet form now irritates my stomach.)  Klonopin to help me sleep with the pain, which I still toss and turn at night and never can get comfortable.  Recently I had to have a Dexascan (bone density scan) done since I have been on the steroids for over one year.  Oh and thanks to my ex-boss, I still take xanax occasionally if I need it. 

 

I just find it odd with things better at work, things at home are great, and my husband is truly a wonderful man.  Why am I having more frequent and severe episodes?  It was never this bad before.  Again, I am all out of sick and annual leave.  Back in March, I was transported by ambulance from my office (embarrassing) for chest pains.  They found that my heart was in good shape, although I didn't pass the treadmill test, shortly after getting off the treadmill and waiting the 45 minute duration for the medication stress test to begin, I had another chest pain attack.  This time I had jaw pain.  The physician's assistant, who I am sure looked at my chart and saw where I take xanax, came to check me over and the first question was, "Do you suffer from anxiety?"  You don't know how bad I want to smack him in his face at that moment.  I know the difference between panic attack and chest pain.  He had the nurse go get a pill for me.  I mentioned to him that I can go days without taking any xanax and that I know this is not a panic attack.  He just looked at me with a smug grin, like I said, I reallllly wanted to smack that grin off of his face. 

 

I know I have written a novel and I do apologize.  I am just curious to know if anyone else has had lupus diagnosed first, then went and had the gastric bypass surgery  and if they noticed their symptoms worsening????  

 

I would appreciate any replies...

 

Thank you,

Achy!

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted Yesterday 9:54 PM (GMT -6)   
Elective surgery often seems to result in Lupus flares. (So does required surgery, of course.) With an auto-immune disease, it just isn't known how or why something might cause a flare, and many kinds of stress are culprits, esp. physical stress. Many of us have flares after surgeries, yet others don't - it's pretty much a guessing game.

Unfortunately, we recently had someone with fairly active lupus pass on shortly after gastric surgery. And we have a member who is having great difficultly after her surgery - issues with not-healing, flares, lung collapse, etc.

I don't off the top of my head know of any lupus patients with gastric bypass who have avoided flares -- but it's possible I simply don't remember the successful surgeries.

It is certainly possible that your surgery was involved in progression of your lupus symptoms -- however, there is no remedy for that and no way to prove or disprove that theory. We have to accept that lupus is a rather tricky and elusive disease, and doesn't have the logical straight forward progression (or remission) that other illnesses might have.

The main things to do, are 1) be sure your rheumy is treating you with a disease-inhibiting medication like plaquenil, and 2) make sure your symptoms are being treated.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted Today 10:35 AM (GMT -6)   
I have not been officially diagnosed with lupus but I do have fibro and some sort of autoimmune disorder. I'm really not sure. But, anyway, I had the surgery too and not until after did I get all the symptoms, infections, issues.......But, it wasn't until about 5 years out that they all started.

The problem could be that your b-12 levels are low. I have to get b-12 shots every month for the rest of my life because I cannot absorb b-12 thru my food. It usually takes about 5 years for your body to use up its storage of b-12 but maybe its happening a little faster for you. Low b-12 can also cause pernitious anemia. I would have these checked because very low levels of either of these can cause a lot of the same symptoms as fibro.


I know that you get lots of blood work but B-12 is not something they always think to check, and people with the gastric by pass and vegetarians are on the top of the list for defficiencies in it.

hope this helps.
Denita
***************************************

Fibromyalgia. Arthritis/bursitis/meniscus tears in both knees.
Cancer survivor

Achy~Achy~Body
New Member


Date Joined Apr 2011
Total Posts : 2
   Posted 4/24/2011 6:58 PM (GMT -6)   
Thank you for replying everyone. Denita, my doctor did say I was low on B12 and now I have to take a shot every week.

My rhummy is not very helpful, he his rather sickly himself. I have requested for another rhummy referral from my primary. A few close friends and my husband have noticed the change after the gastric. In fact I have my last follow up with the gastric bypass surgeon in early May. We will see what he has to say.

sisleb
New Member


Date Joined Apr 2011
Total Posts : 1
   Posted 4/28/2011 8:42 AM (GMT -6)   
Achy:

I have had Lupus symptoms most of my life (not realizing I had Lupus until recently) and also suffered with weight trouble for most of my life. At my heaviest I was 257 at 5'1 about 8 months ago. I decided to have Vertical Sleeve Gastrectomy surgery on Sept. 14th. I thought that weight was the primary factor in why I was always tired, achy, etc... I figured my symptoms would all improve with the weight loss surgery. Unfortunately, it did not, despite the fact that I have lost 105 lbs so far... and am still losing.  Just like you described it almost seemed to cause my symptoms to flare up! In the last 6 or 7 months I have had even worse pain in my body, it is worse late in the evening and early morning. It takes me a good hour to get up... I feel almost frozen all over, especially my arms and legs. The pain and fatigue is overwhelming in the morning and late night. It is hard to feel comfortable going to sleep too. I am now realizing that perhaps I am going through a flare. I am new to all this, since I have only learned I have Lupus in the last month. I just went to a Rheumatologist for the fist time this week. So... at least know that you are not alone! I am not on any meds yet, but my doc has recommended Planquenil, which I am supposed to start after an eye exam and my labs return next week. Any advice anyone has on Planquenil, and side effects? I wish we knew more about how the Lupus affects people with WLS (weight loss surgery). I know it causes some challenges because people with VSG surgery or Bypass should not take NSAIDS, but perhaps there is even more to it? I also by the way take B12 shots monthly, but I did that even before I knew about my Lupus.

Anyhow.... a little comforting to see I am not alone. If I learn anything new I will be sure to share with you Achy! :)

~sisleb~

Post Edited (sisleb) : 4/28/2011 8:45:23 AM (GMT-6)


NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/29/2011 9:27 AM (GMT -6)   
Hi Sisleb, I have not actually been diagnosed although my fam doc strongly suspects lupus, but I have very similar symptoms (real hard to get up from numbness pain in mornings or even if waking in middle of night), but what helped me the most has been corticosteroids (especially like solumedrol or medrol at regular intervals through the day--not just one dose a day)... you might consider asking your rheumy to try that too... I have not tried Plaquenil although my fam doc said they may try it after they get a true diagnosis.

I have had many surgeries (especially brain surgeries for a tumor)... but what seemed to set off all of my stuff was after the birth of my son... I started having all the numbness and tingling/prickling, etc.. (no pain at the time) and then recently full blown symptoms of rash, lesions on scalp/in mouth, severe fatique/bone and joint pain, etc.. also still numbness in hands/feet... so I don't know, but I would think that a surgery which also stimulates your immune system to kick in could also do that too... I wish you all the blessings of life and that things turn around for you soon! At least you have a diagnosis--I have been in limbo now for almost 2 years trying to figure out what was wrong until it finally started looking a little clearer more recently. Nicki

Lymebypass
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/28/2011 2:04 PM (GMT -6)   
Have you been tested for Lyme disease?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/28/2011 2:18 PM (GMT -6)   
I do believe that my gastric surgery (nissen fundoplication) triggered my Lupus to go into full throttle mode.
Since Feburuary (11 months since surgery) my lupus has flared up terribly. :(
Joy

richarro
New Member


Date Joined Oct 2011
Total Posts : 1
   Posted 10/2/2011 7:15 PM (GMT -6)   
I suspect I may have lupus, and I am eight years post-op from RNY (gastric bypass). I have always suffered from fatigue, rashes, and general aches (even as a teen). I can tell now that I have these "flareups," and when they happen, the rash appears and I literally have to go to bed I am so exhausted. I also just found out I have moderate to severe osteoarthritis - I am 38 years old. I am not sure which came first, or what may have caused my symptoms to worsen, but they definitely have after gastric bypass. Otherwise, I am healthy and have kept my weight off.

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 10/3/2011 2:03 PM (GMT -6)   
First I would like to congratulate you on keeping the weight off. I am 10 years post-op and have gained a few pounds each year over the past several years. Stress, prednisone, wrong food choices, IBS .......etc, etc are the culprits. That and lack of will power. I so much wish that I could do it all over, but work harder at getting more off and keeping it all off.

Anyway, I have had several health issues arise in the past several years. I had extreme fatigue, dizziness, balance problems, tingling, burning muscles pain, vision/blurriness, range of motion issues...and the list goes on.

At first I was diagnosed with fibro. Then it was discovered that my b-12 was extremely low.Then my iron levels were low. Then my vit. D was low. Then I had to have thyroid removed. Then,,,,then,,,,,then. Now I have added the diagnosis of RA and I am back on the prednisone.

I have malabsorption issues and I have RA. I cannot tell you which is worse or which causes the most aches and pains. But, I do know that I have to have all these tested every 6 months to be sure that my levels stay up to par. Have you had all these tested. From what I was told by several doctors most patients that had the RNY are having malabsorption issues 8-10 years post op. If you have not had all these tested I would do so very soon. Especially the b-12 and vitamin D, doctors don't always check these.

Again congrats on keeping your weight off, I am jealous. So sorry you are suffering aches and pains. We take the weight off to feel better and be healthier and "wham", no go. It does make you wonder.??

Laura_Griff
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/31/2016 3:17 PM (GMT -6)   
Achy~Achy... Did things ever get better? I am not quite a week out from my Gastric Sleeve, I have Lupus SLE (among other things), and from the time I woke up from surgery I have been horrified that I have made the biggest mistake of my life :( The pain from the surgery just seems never-ending, not to mention the nausea. I can barely swallow my miriad of medications that I have to take on a daily basis. I am praying it gets better.

Jezme
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/31/2016 5:49 PM (GMT -6)   
Well Hello. I was diagnosed with Lupus SLE about a year ago, I was taking Mobic and Plaquenil...but stopped...I seem to flare up with the cold weather....my joints swell...but when it warms up, I feel much better....I just felt worse when I took the meds...decided to just deal with the swelling....anyway I am currently scheduled for a sleeve in June, I have been looking to see if anyone has undergone the sleeve with Lupus and well here you guys are...

It's been a while for Achy...how's it going?

Laura....was the surgery robotic or the old fashioned way? Hope you start feeling better.....

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 3/31/2016 8:06 PM (GMT -6)   
Laura & Jezme,

Welcome to Healing Well. Achy hasn't been on since April of 2011, so she probably won't be joining the discussion. We do have one current member, Butterflake, who has had some sort of bypass but had complications and ended up having it reversed. I don't recall if it was sleeve or what kind.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 4/4/2016 2:44 PM (GMT -6)   
Hi Laura, Jezme, et al. It took 2 years for me to get my lupus diagnosis (2005). I ate for comfort during those years and for at least a couple after that. I had RNY gastric bypass Nov 2010 and in Jan 2011 my stomach closed completely. While in hospital I caught pneumonia, almost died twice, and remained in a coma for over 2 months. The entire year of 2011 I was "fed" nutrition and took all meds through a permanent pic line in my vein. I had 13 endoscopies that year to keep a tiny stomach hole open allowing saliva to pass so I wouldn't choke. Jan 2012 I had my gastric bypass reversed.

I have not put the weight back on, but I have had some unexplained weight loss and last month was diagnosed with what my gastroenterologist called "a gigantic stomach ulcer." I can never do things the conventional way.

Putting all complications aside, I would never recommend gastric bypass to someone with lupus unless one can exercise without flaring and one is willing to exercise fully and eagerly. Without exercise you are only left with the same psychological fight you are currently experiencing. I joined Weight Watchers after my bypass reversal and finally learned portion control. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry
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