WLS with Fibromyalgia and Arthritis of Unknown Origin

[JenniferVSG2011 16]

Hi,

My name is Jennifer. I had VGS surgery October 17, 2011. My highest weight (that I am aware of was 308 lbs). I had always been heavy, but never had tipped the scales at over 300 lbs. I decided to research WLS and went to see my surgeon, Dr Audencio Alanis in August prior to my surgery.

Dr. Alanis was knowledgable, kind, and understanding. His office staff (in particular his lovely wife), were more than helpful with choosing which surgery would best work for me, and with assisting me in getting financing for my procedure. I was able to be scheduled fairly quickly, and was excited to begin my new life!

The surgery went as expected. I was up and walking around soon thereafter, and released the next day. Recovery for the first 1-2 weeks was painful, but I followed all of my post surgical orders, and the weight began to fall off. Follow up care was crucial during the first several months.

By the summer of 2012 I was down to 242 lbs, but had hit a massive plateau. It didn't seem to matter what I did, the weight had simply stalled out. So, I searched for a trainer who could help me push past this mountainous plateau, and found one. I worked out rigorously (and I do mean rigorously - think Cross Fit) for months and was finally able to get down to 213 lbs. I had also developed a good little amount of muscle as a bonus.

In the Spring of 2013 I began to experience severe pain in my lower back that spread down throughout my legs. I thought perhaps I had overdone it. That was not the case.

To make a long story short, I began to get weaker physically, and the pain began to spread all over my body. After much testing I was diagnosed with Fibromyalgia, arthritis of an undetermined origin, and to this day continue to be tested for various autoimmune diseases. I am still waiting to be diagnosed on that front.

Also during this time, I developed cataracts in both of my eyes. They quickly advanced and I was legally blind in at least one eye over the past 2 years. None of this was a result of my WLS. I have now had my cataracts removed, and am being treated for my pain levels.

This leads me to my biggest problem to date. I had gotten down to 213 lbs. I could see 199 around the corner, and then it all went haywire. For 2 plus years I was able to keep my weight in the 215-217 range. I thought perhaps this wasn't bad because I have only been cleared to walk and swim as exercise now. Honestly, most times I don't feel like I have the energy for either. Then about a year ago I began to gain weight. At first I could get it to drop back down, but eventually it has continued to creep back up, and up and up. Two weeks ago I reached 247 lbs and was horrified. I started going back to Protein shakes, and salads, and have been trying desperately to not let myself slip back into bad habits.

​I am simply looking for anyone out there like myself, with a physical affliction who has gone through this and come out of it with better results than before. I worked so hard, and I can't stand the thought of not being able to lose not only the recent weight I have gained, but to never be able to reach my goal weight.

Thank you for taking the time to read this. I am not a sad person with a sad story. I am someone who laughs a lot, and has faith. Just looking for any answers any of you might have.

Jen

[gowalking 10,790]

Hi Jen. I have some similarities to you. I also likely have an undiagnosed auto immune issue. The rheumatologist has told me that there are lots of auto immune diseases that have not been identified as lupus or rheumatoid arthritis have. I also suffer from arthritis and joint disease.

All the doctors can say at this point is that I have a genetic inflammatory illness. They know this because both my mom and sister also have inflammatory issues...just not in the joints like me. Mom has IBS which is inflammation of the bowel, and my sister has a skin inflammation disease that many on this forum also suffer from..hidradentitis suppurativa.

My issues started before being banded so I can't say that the band is related to any of this. But I can say that with the excess weight off, I can deal with things better though I've been on anti-inflammatory meds for quite a while, I've also been on Lyrica and low dose Cymbalta for nerve pain.

Oh..and I also had cataracts. There is evidence that steroids create cataracts at a substantially quicker pace than just aging alone. I had very small, very stable cataracts for years. Once I started taking steroid shots and oral steroids, the cataracts became horrific in a matter of months. I've had both eyes done. If you've been on steroids, it might explain the need for cataract surgery.

Unfortunately, I'm currently in a pain flare and am back on oral steroids to break the pain cycle. I'm accepting the fact that this is a chronic issue with me and I'll never be pain free. All I can hope for is more good days than bad. Some of the meds I take make losing/maintaining the weight loss a challenge. I also can't exercise like most people. I spend alot of time in the pool. It's easiest on my joints so I do exercises there.

Rather than continue this diatribe, feel free to reach out to me if you want on Private Message and we can chat. Hope my story helped you a bit.

Oh...and one more thing...I've had both my hips replaced and at some point, I will need to do my knees as well. The weight loss and hip surgery has given my knees a break but they are still bone on bone and I won't be able to avoid surgery forever.

Liz

[JenniferVSG2011 16]

@@gowalking

Liz,

Thank you for sharing your story. I will send you a PM. It's the appropriate time for me to be able to swim. Maybe I can get some hints from you. I see that despite all that you are going through or have been through, you have reached your goal weight! That is so awesome! There is still hope for me! I will shoot you a PM.

I really appreciate your response! I just joined today!

Thanks,

Jen

[gowalking 10,790]

Welcome to the forum! The people and support here are a very big reason why I've been able to meet my weight loss goals and transition to maintenance...which I'm finding waayyy more challenging.

[theantichick 2,204]

I'm pre-op, but have psoriatic arthritis, and my docs say that the VSG will help with some of the inflammatory factors that are giving me such grief, in addition to taking some load off my poor joints. One of the things I was worried about is the trauma of surgery causing a flare. I have found lots of people here who have auto-immune, diagnosed either before or after surgery. It's hard to try to eat right and exercise when you're struggling just to get through the day.

I started a support sub-group for us spoonies with WLS, if you want to hang out there as well.

http://www.bariatricpal.com/forum/1258-sleeved-spoonies/

http://www.bariatricpal.com/groups/455-sleeved-spoonies/

(both links are for the same place, but apparently there's more than one way to get there.)

Huge hugs!

[gowalking 10,790]

I'm not sleeved but I sure do know the terror of a flare...

My band doesn't do anything as far as I know regarding helping with anti-inflammatory issues. The only thing I got out of it is the weight loss...which helps simply because it takes so much of the load off my joints, but it hasn't helped my pain flares. I also don't know what will set a flare off at times. I know why I'm in this current flare, but I was in a horrible flare that lasted months last year...and we still don't know what set it off.

I know that NSAIDS are not good for me...whether I'm banded or not... I know that I'm risking an internal bleed but without taking the meds...I'm not able to be as mobile as I need to.

I try to stay positive because even in a pain flare, I can still walk...and before getting the hip replacements, I was virtually bedridden...and that was after losing 70 lbs.

[JenniferVSG2011 16]

@@theantichick

Thanks for the links! That sounds like something right up my alley right now for sure!

[JenniferVSG2011 16]

@@theantichick

Hi,

I clicked on your group link, but am not able to see anything. Not sure if I need to be approved to join. Just thought I would let you know. I would love to share with others who suffer from chronic pain and have been through WLS, or are about to embark on the journey.

Thanks!!!!

Jen

[theantichick 2,204]

Shouldn't require any approval, everything was set to open/public.

Did you try both links? Apparently one works better on phones and one works better on computers. I've moderated a lot of different forums before, but don't know this one very well. If we're having consistent issues I may need to forward them to support. But I'll need to get specifics about what's working and not working.

[JenniferVSG2011 16]

@@theantichick

I tried both links, and can see the spoons but nothing else. Let me try again. I will let you know if it doesn't work and what I am seeing. I will try from my phone as well.

[theantichick 2,204]

Cool. I also noticed that from the group homepage there wasn't a link to discussions, so I added a news item with the link. Hopefully that will help as well.

[JenniferVSG2011 16]

@@theantichick,

I still can't access the discussion online. I can see posts when I click on the link on my phone, but I am still trying to navigate the app. I will play around with the app and see if I can respond to anything. I am looking forward to being a part of the group discussion.

Hugs,

Jen

[JenniferVSG2011 16]

Good Morning Ladies,

​Just an update. I installed the my fitness pal app on my phone. I have really upped my Protein intake, and am lowering my carbs. Can anyone give me the standard for both? I have it set at 90 grams of Protein, and 120 grams of carbs, and finally 40 grams of fat. Does that sound about right? I have a 1200 calorie allotment per day.

I also purchased a Samsung watch with S Health to track my steps and activity. And I ordered a 32oz Water bottle with a fruit infuser.< /i>

​If I am missing something, please feel free to let me know!! Oh and the powders?utm_source=BariatricPal&utm_medium=Affiliate&utm_campaign=CommentLink" target="_ad" data-id="1" >unjury Protein powder and some mega Vitamins are on their way, along with some B12 Patches that I ordered from the online store here.

Thanks to everyone of you for being so kind, and helpful. I hope I can return the favor!

Jen

[Jilly69 13]

Hi Jen: Are you seeing a Rheumatologist? If not you might want to consult one to help with a diagnosis. I went to doctors or 14 years, most of them told me that my symptoms were all in my head. It wasn't till I sat down one day and wrote down everything I though was a symptom and when I was done I had 2 sides of a piece of paper. I went and saw a new Rhematologist and gave him the paper with the symptoms, he spent an hour and a half with me going over everything and then sent me for a million x-rays and tons of blood work and some other tests. He had told me he thought I had reactive arthritis. I went home and looked it up and thought hum, that doesn't sound too bad. When he got my results he told me I have Ankylosing Spondylitis! I said what the HELL is that I can't even pronounce that. It is also a form of arthritis and is an autoimmune disease with no known cure. I also have a secondary diagnosis of rheumatoid arthritis , along with Fibromyalgia. He is constantly testing me though for Lupus, that's what they thought I might have in the beginning, but it is hard to diagnos. Don't give up on a diagnosis, only you know your body and you need to keep pressing the doctors for a diagnosis, not just arthritis of unknown origin. I am pre-op right now, but will be getting sleeved in July. My doctors say it should help with some of the issues I have. Also when you have one autoimmune disease, it is possible to have more than one of them. I hope you get a clear diagnosis in the near future it will help put your mind at ease when you have a name to what is causing you so much troiuble. Sorry for the long post....Jill

[gowalking 10,790]

Hi Jen: Are you seeing a Rheumatologist? If not you might want to consult one to help with a diagnosis. I went to doctors or 14 years, most of them told me that my symptoms were all in my head. It wasn't till I sat down one day and wrote down everything I though was a symptom and when I was done I had 2 sides of a piece of paper. I went and saw a new Rhematologist and gave him the paper with the symptoms, he spent an hour and a half with me going over everything and then sent me for a million x-rays and tons of blood work and some other tests. He had told me he thought I had reactive arthritis. I went home and looked it up and thought hum, that doesn't sound too bad. When he got my results he told me I have Ankylosing Spondylitis! I said what the HELL is that I can't even pronounce that. It is also a form of arthritis and is an autoimmune disease with no known cure. I also have a secondary diagnosis of rheumatoid arthritis , along with Fibromyalgia. He is constantly testing me though for Lupus, that's what they thought I might have in the beginning, but it is hard to diagnos. Don't give up on a diagnosis, only you know your body and you need to keep pressing the doctors for a diagnosis, not just arthritis of unknown origin. I am pre-op right now, but will be getting sleeved in July. My doctors say it should help with some of the issues I have. Also when you have one autoimmune disease, it is possible to have more than one of them. I hope you get a clear diagnosis in the near future it will help put your mind at ease when you have a name to what is causing you so much troiuble. Sorry for the long post....Jill

Hi Jill. I'm at that 'arthritis of unknown origin' point. Have been for a few years now. The rheumatologist has tested me over and over and keeps an eye on my inflammatory markers. I take anti-inflammatory meds and methotrexate with folic acid. What are you prescribed now that you have a definitive diagnosis? I'm really curious to know as this chronic illness and the pain that goes along with it is draining at times...especially now that I'm in a flare and back on steroids.