1. < Autoimmune Diseases

Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 30, 2017

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

lemartin417 | @lemartin417 | Jul 16, 2022
In reply to @tmtm4 "Hi, I am also seronegative. I love my Rheumatologist and Primary doc. They put their heads..." + (show)
@tmtm4

Hi,
I am also seronegative. I love my Rheumatologist and Primary doc. They put their heads together and agreed I have RA even though I do not have that RA marker. I have had six shoulder surgeries (3R, 3L) ending in a Reverse on both; back fusion even though I have two other smashed discs inside the curve due to scoliosis; failed bunionectomy that resulted in six dislocations on my other toes so 4/5 foot surgeries; severe arthritis throughout my spine and hands, trigger finger (both thumbs); carpal tunnel/R & L; and the list goes on. Two yrs. ago, they wanted to put a rod in my back from my butt to T something. I think it was 14 discs & I refused because I have heard horror stories about those rods. I got a doctor to fix one disc outside of the curve that has grown from a couple of discs when I was ten, to an S-curve in to my middle back. I also have spinal stenosis and osteoporosis. Neuropathy in toes on both feet but bad in the top half of my R foot. Now the arch in my mouth has collapsed and jaw is wonky. I prob. won't be able to get implants or even implant-supported dentures because of the osteoporosis.
Sick of all of it and I do mean sick of all of it.

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Oh my…..I’m so sorry you’ve had to suffer so much. I have had lumbar surgery due to degeneration and disc loss . I have a wonderful surgeon who performed a Transforaminal
lumbar interbody fusion L5-S1. So, I have two rods and 4 screws in my lumbar back. He said when he removed what was left of the disc he was surprised to see it was all gone except for a small amount on either side. The same surgeon recently performed surgery on my cervical spine and the procedure was ANTERIOR CERVICAL
Name
DISCECTOMY WITH FUSION.
C4-5 AND C5-6, USING
ANTERIOR PLATE AND
SCREWS THAT WERE
SEPARATE FROM THE
INTERBODY GRAFTS.
POSTERIOR
DECOMPRESSIVE
LAMINECTOMY OF C4, C5, C6
AND PARTIAL C7. I’m lucky to have found him as my surgeries have gone remarkably well and I have benefited from both of them. I have considered trying to see someone at Mayo Clinic or Cleveland Clinic but have not taken the steps to try to get an appointment yet. Everything seems so overwhelming and to embark on a long trip in unknown territory is something I’ve been putting off but I may have to do so in the near future.

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1 reply
tmtm4 | @tmtm4 | Jul 16, 2022
In reply to @lemartin417 "Oh my…..I’m so sorry you’ve had to suffer so much. I have had lumbar surgery due..." + (show)
@lemartin417

Oh my…..I’m so sorry you’ve had to suffer so much. I have had lumbar surgery due to degeneration and disc loss . I have a wonderful surgeon who performed a Transforaminal
lumbar interbody fusion L5-S1. So, I have two rods and 4 screws in my lumbar back. He said when he removed what was left of the disc he was surprised to see it was all gone except for a small amount on either side. The same surgeon recently performed surgery on my cervical spine and the procedure was ANTERIOR CERVICAL
Name
DISCECTOMY WITH FUSION.
C4-5 AND C5-6, USING
ANTERIOR PLATE AND
SCREWS THAT WERE
SEPARATE FROM THE
INTERBODY GRAFTS.
POSTERIOR
DECOMPRESSIVE
LAMINECTOMY OF C4, C5, C6
AND PARTIAL C7. I’m lucky to have found him as my surgeries have gone remarkably well and I have benefited from both of them. I have considered trying to see someone at Mayo Clinic or Cleveland Clinic but have not taken the steps to try to get an appointment yet. Everything seems so overwhelming and to embark on a long trip in unknown territory is something I’ve been putting off but I may have to do so in the near future.

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The original neurosurgeon is very well-respected and one of the best in KC. He refused to fuse any of the three compressed discs including the one outside the curve because my back will collapse "in the near future" if he does. I went for a second opinion and he said, yes he can fuse the one on the outside.
I didn't understand how both docs had opposite opinions so I went to a third consult. Of course, he said they are are both right. He can fuse the one on the outside, but I will most likely need the "big" operation in the near future. That was two years ago. The thought of going into a hospital for a month w/another month upstairs in rehab makes me sick to my stomach. I do not think I would survive it.
After my last shoulder surgery, I told the home health nurse I don't know what my problem is. I start shaking and crying before going under for any type of surgery. It's embarrassing but I can't help it. She said I have PTSD from all the surgeries.

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1 reply
lloydje1 | @lloydje1 | Jul 17, 2022
In reply to @lemartin417 "Thank you so much for your response. No, I have not tried any of the therapies/food..." + (show)
@lemartin417

Thank you so much for your response. No, I have not tried any of the therapies/food modifications you mentioned but will check them out. So glad you finally got your diagnosis and am hoping you’ve found some relief.

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I can attest to the differences it has made for me. I’m following WFPB low-fat, no oil or sugar. Its not an overnight change. I have fallen back on my ways and when I do the flare ups return. I’m doing this in conjunction with taking Enbrel. There’s too much information for me to list it all here. If interested, check out youtube for Paddison Program and for WFPB information Chef AJ

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 17, 2022
In reply to @lloydje1 "I can attest to the differences it has made for me. I’m following WFPB low-fat, no..." + (show)
@lloydje1

I can attest to the differences it has made for me. I’m following WFPB low-fat, no oil or sugar. Its not an overnight change. I have fallen back on my ways and when I do the flare ups return. I’m doing this in conjunction with taking Enbrel. There’s too much information for me to list it all here. If interested, check out youtube for Paddison Program and for WFPB information Chef AJ

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@lloydje1, Thanks for sharing what has helped you. I thought I would share the YouTube video for you. It is well worth watching and considering for those that have RA.

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lemartin417 | @lemartin417 | Jul 17, 2022
In reply to @lloydje1 "I can attest to the differences it has made for me. I’m following WFPB low-fat, no..." + (show)
@lloydje1

I can attest to the differences it has made for me. I’m following WFPB low-fat, no oil or sugar. Its not an overnight change. I have fallen back on my ways and when I do the flare ups return. I’m doing this in conjunction with taking Enbrel. There’s too much information for me to list it all here. If interested, check out youtube for Paddison Program and for WFPB information Chef AJ

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Thank you, I will.

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adlttl123 | @adlttl123 | Jul 17, 2022
In reply to @glued2thebook "Hi. My name is Clare. I’m a retired RN and relocated to South Carolina from NY..." + (show)
@glued2thebook

Hi. My name is Clare. I’m a retired RN and relocated to South Carolina from NY for a year and a half now. Initially, I was dx with lupus 34 yrs ago which then switched to intermediate Ra.

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Hi Clara. How do you like the Carolinas? I just love them of course I was born in Georgia. A few years ago I lived in very southern VA and it was only a 40 minute drive to Greensboro, NC. Boy did I go there often and enjoyed every minute of it. Hope you’re enjoying living in SC.

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chris47 | @chris47 | Jul 18, 2022
In reply to @lloydje1 "My issues aren’t as complicated as yours. I am seropositive for RA and have had issues..." + (show)
@lloydje1

My issues aren’t as complicated as yours. I am seropositive for RA and have had issues misdiagnosed as chronic Lyme’s disease so, I went untreated for 15 years until the symptoms became recognizable as RA. I am following some people who have gone into remission using WFPB protocol, cutting out oil improved my pain level. Have you looked into alternative treatment for gut health and digestive issues due to food sensitivities that cannot be detected by allergy tests and other conditions traditional medicine doesn’t cover? Also, there’s prolotherapy which regards the vagus nerve. Have you tried any of these?

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Very good advice!
I have Arthritis - but it is the result of gut damage caused by Celiac Disease.
Basically, the CD related gut damage has caused a structural cascade of other organ damage.
The initial CD symptoms were triggered by a viral infection. The gut villii damage caused by eating gluten after the viral infection damaged my body’s ability to create DAO - a powerful natural anti-histamine 80% of which is produced by the gut.
This lack of DAO let to adrenal fatigue and reduced production of the anti-inflammation hormone cortisol which allowed the arthritis to affect my tendons, ligaments and joints.
Add to that an inability to absorb B12 and calcium among other important nutrients and the ability to diagnose the arthritis cause is greatly clouded.
Both CD and IBD can create similar gut damage. So testing for both should help to better understand the management processes you should develop to deal with your arthritis and any other symptoms related to any gut damage that has occurred!
Chris47 -

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lemartin417 | @lemartin417 | Jul 20, 2022
In reply to @johnbishop "Welcome Lori @lemartin417, You certainly have a lot on your plate and have been dealing with..." + (show)
@johnbishop

Welcome Lori @lemartin417, You certainly have a lot on your plate and have been dealing with it for a long long time. I'm hoping some member with similar symptoms or experience may be able to share some thoughts or suggestions with you.

I was not familiar with the rare condition so had to look it up and found this reference that talks about it - Cutaneous Collagenous Vasculopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4689498/.

I have a similar looking discoloration vs rash on my legs that my doctors just said it's related to edema. I do have lymphedema as one of my conditions and have to wear compression socks to help. It sounds like you have seen many doctors and specialists over the years. Have you ever been to a teaching hospital or major health facility like Mayo Clinic to see if they might have some insight to a more complete diagnosis?

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Thank you John, for the link. I’ve read what I can find online about CCV but his was new for me. Any information is much appreciated. For now my diagnosis is general essential teleangiectasia. I have added a photo of my left leg. I have considered going to a teaching hospital and am thinking I need to take steps to get that started.
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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 20, 2022
In reply to @lemartin417 "Thank you John, for the link. I’ve read what I can find online about CCV but..." + (show)
@lemartin417

Thank you John, for the link. I’ve read what I can find online about CCV but his was new for me. Any information is much appreciated. For now my diagnosis is general essential teleangiectasia. I have added a photo of my left leg. I have considered going to a teaching hospital and am thinking I need to take steps to get that started.

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I think a teaching hospital or major health facility would be a good place to go if possible. Have you ever used Google Scholar? (https://scholar.google.com/). It's great for finding medical reference type info and it lets you sort results by year to get the latest links. Here are a couple references. The second one is from 1971 but sounds really promising if it would work.

-- Treatment of Essential Telangiectasias with an Intense Pulsed Light Source (PhotoDerm VL): https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1524-4725.1997.tb00755.x
-- Essential Progressive Telangiectasia - Successful Treatment With Tetracycline: https://jamanetwork.com/journals/jama/article-abstract/336255

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yelenik123 | @yelenik123 | Jul 22, 2022

Hello, My name is Lisa, I am 39yrs old, I am married and we have three children. I was diagnosed as Seronegative in 2015.

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