Hi Everyone,
I was recently diagnosed with my third autoimmune disorder (eosinophilic esophagitis). I also spontaneously developed a frozen shoulder a couple of years ago, something most common among people with autoimmune disorders. So, I clearly have autoimmune disease genes, so I want to be sure I’m not missing an autoimmune explanation for my pn. So, what are the autoimmune diseases that can cause pn? I know about MS, diabetes, and Complex Regional Pain Syndrome. Are there others?
Many thanks,
April
autoimmune diseases linked to pn?
autoimmune diseases linked to pn?
Last edited by April on Mon Nov 05, 2018 2:39 am, edited 1 time in total.
Re: autoimmune diseases linked to pn?
Hi April,
That's discouraging that you now have another problem to deal with. Are any treatments helping you?
Some immune system diseases I remember being mentioned by patients before are Sjogren's syndrome, ankylosing spondylitis, and lyme disease. I don't know of any studies that have specifically linked them with PN though. Fribromyalgia, IBS, and lichen sclerosis, although not exactly autoimmune diseases, have also been mentioned before by PN sufferers.
Violet
That's discouraging that you now have another problem to deal with. Are any treatments helping you?
Some immune system diseases I remember being mentioned by patients before are Sjogren's syndrome, ankylosing spondylitis, and lyme disease. I don't know of any studies that have specifically linked them with PN though. Fribromyalgia, IBS, and lichen sclerosis, although not exactly autoimmune diseases, have also been mentioned before by PN sufferers.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: autoimmune diseases linked to pn?
Thank you, Violet. That is helpful. I'll review those diseases just in case they fit my profile. But, given my recent MRI report, I am back to thinking I have exercise-induced pne.
April
April
Re: autoimmune diseases linked to pn?
That's what happened to me so I can understand. I guess we are the over-achieving type when it comes to exercise. 
Hopefully your PNE will respond to treatment as mine did.
Violet
Hopefully your PNE will respond to treatment as mine did.Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: autoimmune diseases linked to pn?
I think you're right! We were overachieving exercisers. And the sad thing is the only reason I did it was to be healthy! Yes, I'm hoping my treatment goes as well as yours.
Best,
April
Best,
April
Re: autoimmune diseases linked to pn?
Yes, I hope so, April. It's an agonizing decision to make but it helps when you have more information.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: autoimmune diseases linked to pn?
I'm new here. Just got my diagnosis.
How do I get the hibner protocol?
I saw Jarnigan couple of weeks ago who said I had pudendal irritation. I wasn't having much pain then-
Just the Pgad and tingling- now I am having a pain left side
Near where ovary is. I am post-menopause .
I initially fell on my left side
this past winter and began having Pgad stuff with my injuries. It's calmed down a lot- but now there is a pain
twinge
Going up left ovary area. Pubic symphosis soreness also that side.
Is that pain twinge where other people have pain or is pain only in
The perinium area- like labia,clitoris , pubic, rectum...? - where is the stabbing pain that is
Referred to in posts? I have soreness in sitting area & tingling in vaginal-labia, but the actual pain twinge
Is further up.
Jarnigan wanted to do amniotic shot-but it doesn't sound too greAt- I don't want to get worse.
I'm having spasms-lot better now - but they are still In pretty full force- I take xAnax nightly and spread it throughout
The day in smaller doses. Wondering about lyrica- could I still have my mental capacity during the day on it?
I gotta work while I can. I feel like the bottom could fall out at any time.
How bad is baclofen at night? I have it, but won't take it-scared. If I continue to have pain twinges
Like today, I feel I may need something more for the spasm . And it would be awesome to have some relief
From that Pgad. It has gotten so old! I think of those women my age who have no sex drive and can't help
Laugh at my symptom!.
Jarnigan didn't recommend any new meds, but then I didn't have as much pain.
I have always had the possible MS diagnosis - lot of nerve problems over the years- feet tingling- numb- which I am having
right now along with the pgad- but it's always eventually gone away. That's another thing the docs can't figure out-why feet and vagina, etc both tingling
at the same time. When I orgasm, feet go to town tingling also . I also have calf spasms- both sides.
. Common answer of all my docs is "I don't know"
Everyone has just passed me on to someone else.
I do have a pelvic PT & being treated for pelvic floor disorder-lots of kegels- is that ok? She's trying to
Strengthen me-I just wonder what other Pelvic PTs do. I heard kegels were sometimes not good.
I Asked Jarnigan nurse about MRI- she replied why- because surgery could not be done. But she said she'd try to get
Him to order one.
I at least Want to know what I'm dealing with- I want to explore my options- I still have hope at this point
I have lot of back issues also and wonder about the L5-s1, l3-l4, l4-l5 issue being related.
Long post. Hope this makes some sense.
How do I get the hibner protocol?
I saw Jarnigan couple of weeks ago who said I had pudendal irritation. I wasn't having much pain then-
Just the Pgad and tingling- now I am having a pain left side
Near where ovary is. I am post-menopause .
I initially fell on my left side
this past winter and began having Pgad stuff with my injuries. It's calmed down a lot- but now there is a pain
twinge
Going up left ovary area. Pubic symphosis soreness also that side.
Is that pain twinge where other people have pain or is pain only in
The perinium area- like labia,clitoris , pubic, rectum...? - where is the stabbing pain that is
Referred to in posts? I have soreness in sitting area & tingling in vaginal-labia, but the actual pain twinge
Is further up.
Jarnigan wanted to do amniotic shot-but it doesn't sound too greAt- I don't want to get worse.
I'm having spasms-lot better now - but they are still In pretty full force- I take xAnax nightly and spread it throughout
The day in smaller doses. Wondering about lyrica- could I still have my mental capacity during the day on it?
I gotta work while I can. I feel like the bottom could fall out at any time.
How bad is baclofen at night? I have it, but won't take it-scared. If I continue to have pain twinges
Like today, I feel I may need something more for the spasm . And it would be awesome to have some relief
From that Pgad. It has gotten so old! I think of those women my age who have no sex drive and can't help
Laugh at my symptom!.
Jarnigan didn't recommend any new meds, but then I didn't have as much pain.
I have always had the possible MS diagnosis - lot of nerve problems over the years- feet tingling- numb- which I am having
right now along with the pgad- but it's always eventually gone away. That's another thing the docs can't figure out-why feet and vagina, etc both tingling
at the same time. When I orgasm, feet go to town tingling also . I also have calf spasms- both sides.
. Common answer of all my docs is "I don't know"
Everyone has just passed me on to someone else.
I do have a pelvic PT & being treated for pelvic floor disorder-lots of kegels- is that ok? She's trying to
Strengthen me-I just wonder what other Pelvic PTs do. I heard kegels were sometimes not good.
I Asked Jarnigan nurse about MRI- she replied why- because surgery could not be done. But she said she'd try to get
Him to order one.
I at least Want to know what I'm dealing with- I want to explore my options- I still have hope at this point
I have lot of back issues also and wonder about the L5-s1, l3-l4, l4-l5 issue being related.
Long post. Hope this makes some sense.
Re: autoimmune diseases linked to pn?
Welcome to the forum, Mmjohnson,
I got the Potter protocol by calling Dr. Potter's office. I requested it, and they emailed it to me. Hollis G. Potter is her full name, and she is in NY. I also have it, so you can send me your email in a pm, and I will send to you. If you do use this, I recommend sending the protocol to the place that's doing the MRI several days in advance, so the radiologists and techs have time to figure out how to get the images. One of the techs that did my MRI said they had to do homework to figure out how to get all the images, so I think sending it to them in advance helped. You can ask the ordering doctor (e.g., Jarnigan or your pcp) fax the protocol with the MRI order.
My burning pain is diffuse and covers all the areas of the perineal branch, but my stabbing and knifing pain is further up. I would place it a few inches above my left labia. And I think others have pain that is internal and a bit above the pelvic floor.
Have you tried ice? I use ice 24-7 to supplement my meds. I put a frozen condom (about 4-5 inches long when frozen) that is wrapped in a wet paper towel on a pad in my underwear. I have a long entry on how I do that elsewhere in the forum. You might give it a try to see if it helps. Have you seen a pain doctor? That kind of doctor should be able to help you figure out what medications will reduce your pain.
You could ask for a lumbar MRI along with the pelvis MRI if you think there could be a lumbar back connection. In my case, I don't think there is, but I do know of at least one pgad sufferer whose pgad declined after lumbar back surgery.
Good luck. Keep us posted!
April
I got the Potter protocol by calling Dr. Potter's office. I requested it, and they emailed it to me. Hollis G. Potter is her full name, and she is in NY. I also have it, so you can send me your email in a pm, and I will send to you. If you do use this, I recommend sending the protocol to the place that's doing the MRI several days in advance, so the radiologists and techs have time to figure out how to get the images. One of the techs that did my MRI said they had to do homework to figure out how to get all the images, so I think sending it to them in advance helped. You can ask the ordering doctor (e.g., Jarnigan or your pcp) fax the protocol with the MRI order.
My burning pain is diffuse and covers all the areas of the perineal branch, but my stabbing and knifing pain is further up. I would place it a few inches above my left labia. And I think others have pain that is internal and a bit above the pelvic floor.
Have you tried ice? I use ice 24-7 to supplement my meds. I put a frozen condom (about 4-5 inches long when frozen) that is wrapped in a wet paper towel on a pad in my underwear. I have a long entry on how I do that elsewhere in the forum. You might give it a try to see if it helps. Have you seen a pain doctor? That kind of doctor should be able to help you figure out what medications will reduce your pain.
You could ask for a lumbar MRI along with the pelvis MRI if you think there could be a lumbar back connection. In my case, I don't think there is, but I do know of at least one pgad sufferer whose pgad declined after lumbar back surgery.
Good luck. Keep us posted!
April