Calling all AUTOIMMUNE sleevers

[gamergirl 4,609]

I there! I just figured out how to create a support group for autoimmune sleevers. If several of us join and start posting there, we might be able to create a place for those of us with RA, psoriatric arthritis, hashimotos, lupus, SA, etc. I set it to public so anyone can join. Pls join if this pertains to you, and invite your forum friends as well.

I'm a support group creation virgin so be gentle with me if I screwed it up. Here's the link (I hope!)

http://www.verticalsleevetalk.com/groups/show/269-autoimmune-sleevers/

[deedadumble 1,033]

I'm in. I have multiple AI disorders... PCOS, Hashimotos, and Lichen Planus (Oral). I also am being treated for Fibromyalgia, although I am starting to become convinced that my pain may be from extremely low Vit D and from the Hashis not being treated fully.

[nsquared 232]

I just joined! I have MS, dx in 2001, and I think it is a great idea.

[gamergirl 4,609]

Great! I started a discussion there for us to introduce ourselves.

[natalie_christin 61]

Hi Gamergirl – I'm glad you started page for people with autoimmune disorders but when I went to the lake, it was different then the normal threads/pages… I couldn't see a way to post and it didn't look like there were any bows to begin with. I would appreciate any guidance you willing to offer. Do you think that they would consider opening one under the special circumstances thread or something like that? I don't know exactly what it's called but I can find it.

[gamergirl 4,609]

Hi Gamergirl – I'm glad you started page for people with autoimmune disorders but when I went to the lake' date=' it was different then the normal threads/pages… I couldn't see a way to post and it didn't look like there were any bows to begin with. I would appreciate any guidance you willing to offer. Do you think that they would consider opening one under the special circumstances thread or something like that? I don't know exactly what it's called but I can find it.[/quote']

Oh really? Thanks for letting me know. Let me futz around with it a bit today and see how it works.

[natalie_christin 61]

I had surgery on September 17… I made it through all of my post op levels and now I'm on regular food. While I have a problem switching the mindset from eating low-fat to not worry about fat and just carbs– Which just blows my mind… I'm still trying to be pragmatic and pay special attention to what I'm eating. I did take care of Protein first. But the problem is, I stopped losing weight and now I've even gained a couple of pounds. I don't know if this is just due to a back up intentionally – sorry not trying to be crude, I'm not sure how else to convey that… Or if it's because of my steroid shots and rheumatoid medicine… I really wish I had more help with my dietitian. I'm trying to do the right thing on both sides of the fence. I'm staying away from carbs and I'm sticking to chicken or fish.... I know this isn't going to be an easy battle but I wish I had more guidance when it comes to all of this.

I'm sorry, I'm not intending to complain, I just felt like I'm out there flailing around ever since surgery. I already knew that I had severe rheumatoid arthritis and osteoarthritis as well as other chronic pain conditions and nerve damage on my spine and abdominal wall but just also found out I have psoriatic arthritis too. It just adds to the bunch LOL

Blessings,

Nat

[natalie_christin 61]

I had surgery on September 17… I made it through all of my post op levels and now I'm on regular food. While I have a problem switching the mindset from eating low-fat to not worry about fat and just carbs– Which just blows my mind… I'm still trying to be pragmatic and pay special attention to what I'm eating. I did take care of Protein first. But the problem is' date=' I stopped losing weight and now I've even gained a couple of pounds. I don't know if this is just due to a back up intentionally – sorry not trying to be crude, I'm not sure how else to convey that… Or if it's because of my steroid shots and rheumatoid medicine… I really wish I had more help with my dietitian. I'm trying to do the right thing on both sides of the fence. I'm staying away from carbs and I'm sticking to chicken or fish.... I know this isn't going to be an easy battle but I wish I had more guidance when it comes to all of this. I'm sorry, I'm not intending to complain, I just felt like I'm out there flailing around ever since surgery. I already knew that I had severe rheumatoid arthritis and osteoarthritis as well as other chronic pain conditions and nerve damage on my spine and abdominal wall but just also found out I have psoriatic arthritis too. It just adds to the bunch LOL Blessings, Nat[/quote']

I thought to introduce myself some more but I can't seem to do it on the link that was provided. I can go in and read the posts that have already been written, but then It states that replies are not allowed and when I try to create a new thread, it won't allow me to do that either… I'm thinking that with the new changes to the fourms/app, then maybe that's being shut down? I could totally be wrong but, I would really enjoy to have the opportunity to be in a group like this. To have others that are going through the same things I am. Any input would be greatly appreciated.

[lubelu 55]

I'm in. I have multiple AI disorders... PCOS' date=' Hashimotos, and Lichen Planus (Oral). I also am being treated for Fibromyalgia, although I am starting to become convinced that my pain may be from extremely low Vit D and from the Hashis not being treated fully.[/quote']

I just had to share I'm also a lichen planus sufferer. At one stage I had it all over (but I've never had it orally) but now I've just come out of a two year flare up with Patches on my wrists, ankles and back.

[gamergirl 4,609]

I had surgery on September 17… I made it through all of my post op levels and now I'm on regular food. While I have a problem switching the mindset from eating low-fat to not worry about fat and just carbs– Which just blows my mind… I'm still trying to be pragmatic and pay special attention to what I'm eating. I did take care of Protein first. But the problem is' date=' I stopped losing weight and now I've even gained a couple of pounds. I don't know if this is just due to a back up intentionally – sorry not trying to be crude, I'm not sure how else to convey that… Or if it's because of my steroid shots and rheumatoid medicine… I really wish I had more help with my dietitian. I'm trying to do the right thing on both sides of the fence. I'm staying away from carbs and I'm sticking to chicken or fish.... I know this isn't going to be an easy battle but I wish I had more guidance when it comes to all of this. I'm sorry, I'm not intending to complain, I just felt like I'm out there flailing around ever since surgery. I already knew that I had severe rheumatoid arthritis and osteoarthritis as well as other chronic pain conditions and nerve damage on my spine and abdominal wall but just also found out I have psoriatic arthritis too. It just adds to the bunch LOL Blessings, Nat[/quote']

Welcome! So if you had surgery sept 17 and have stalled a bit, I wouldn't worry about it. As long as you've lost over the last 30 days, then occasional stalls are to be expected.

From what I have read, for those with autoimmune, the best diet is one that is 40% Protein, 40% fat! and 20% carbs. That's what I switched to a month ago, and it has really helped my weight loss start up again. You might try that and see if it works?

[gamergirl 4,609]

I thought to introduce myself some more but I can't seem to do it on the link that was provided. I can go in and read the posts that have already been written' date=' but then It states that replies are not allowed and when I try to create a new thread, it won't allow me to do that either… I'm thinking that with the new changes to the fourms/app, then maybe that's being shut down? I could totally be wrong but, I would really enjoy to have the opportunity to be in a group like this. To have others that are going through the same things I am. Any input would be greatly appreciated.[/quote']

Yeah I checked with Alex and he said it's not possible to access th groups from a mobile device, but we can from the computer. I think you should be able to start a thread from the computer too?

[gamergirl 4,609]

Hi Gamergirl – I'm glad you started page for people with autoimmune disorders but when I went to the lake' date=' it was different then the normal threads/pages… I couldn't see a way to post and it didn't look like there were any bows to begin with. I would appreciate any guidance you willing to offer. Do you think that they would consider opening one under the special circumstances thread or something like that? I don't know exactly what it's called but I can find it.[/quote']

I've asked them but no response. So the way to access from the computer is to go to the second tab on the page that days groups, and then find it that way. Alternatively, you can go to your own profile on the computer, and find it in the groups you belong to.

When I try that, I am able to open a new topic but I'm not sure if others are? Will someone try and let me know?

If you guys can't, for now, just PM me and I will start one for you and then you can take it over. Pain I know, but Alex says once they migrate to the new platform, this will become easier.

The more members we can get in here, the better the case we can make that there are indeed enough people interested in this issue.

[gamergirl 4,609]

I'm in. I have multiple AI disorders... PCOS' date=' Hashimotos, and Lichen Planus (Oral). I also am being treated for Fibromyalgia, although I am starting to become convinced that my pain may be from extremely low Vit D and from the Hashis not being treated fully.[/quote']

Are you supplementing with Vit D? Is it helping?

[deedadumble 1,033]

Are you supplementing with Vit D? Is it helping?

Yes. I think the Vit D helps a bunch with my all over pain. When I first had issues about 2.5 years ago, my level was 11. I was put on 50,000IU a week and that barely raised it. Then I was put on 100,000IU a week for several months and finally got it up to 35 about a year later. My endo said that I was now in the normal range, but the tests show that I don't process Vit D through food or sunlight and that I would always have to supplement. She lowered my dose to 50,000IU every other week to keep me in the normal range, but I was still in pain and noticed that my pain would get worse towards the end of the two weeks. I'm following the guidelines from "Stop the Thyroid Madness" and a few other books that say that Hashimotos patients feel better when their Vit D levels are over 80. I am also working on getting my thyroid hormone levels into optimal ranges as well. I am definitely feeling better and have a lot more energy than a month or two ago when I started.

[suzykee 3]

Anyone have celiac disease?