Soy

Hi all,  

I saw my Dentist and he confirmed  as well as LS I have LP.

I love spicy food so I shall have to just eat it when not having a flare up.

Do any of you have pain in your bones, my lower back and cocyx are very painful when I get up and I wonder if it's my auto immune disorder.

Hope you are well at present.

Catharine.

How loyal you Catherine 

Catherine, I too get lower back pain.

I attribute it to carrying heavy groceries for years & a fall I had 10yrs ago... these things catch up to us with age. However when I'm not well which is more often than not - EVERYTHING flares up... every little ache is magnified. A friend got me an organic heating pad ; it has some type of wheat or beans in it and I heat it in microwave with s glass of water. It's nice because the whereat/beans mold to your body.

Ibuprophen and naproxen don't even come close to this funny heating pad- maybe look online?

I have read that people with autoimmune disorders are more likely to suffer from joint aches.

Dear Catherine,

I've had problems with my lower back and sacroiliac joints for several years. I'm discovering that some of my problem may be due to herpes simplex virus (which I also have) that lies dormant in the lumbrosacral nerve root ganglia. I haven't had sex in 35 years, and didn't think there herpes was an issue. Due to back surgery complications I'm finding there is a connection that none of doctors even know about

Dear Trudy,

So sorry for your pain.

I realize lower back pain is common.

But, I too have suffered from low back pain for years.

Last April, I had an L4-S1 spinal fusion that didn't go well.

I'm really curious about how genetics and other autoimmune disorders play into oral lichen planus. I have a number of autoimmune disorders, olp is just icing on the cake. I'm 71 years old. Recently, I did a DNA test which showed I'm 46% English, 26% Irish. I live in the US. I've noticed, that some of my conditions seem more prevalent in the U.K. I'm just trying to make sense of this as I'm trying to cope with the pain.

Hi , I'm really sorry your operation did not go well, my daughter who is 40 is having vertebrae 4/5 fused with a piece of her own hip bone in April.  I'm very worried about her.

 

Sorry Catherine I meant to say how old are you

Ive found a mouth wash using bicarbonate of soda helps , My Dentist has written to my Doctor to prescribe a tablet to disolve in a small amount of water and use as a mouth wash.  I shall put the results on line when I get them , at the moment I'm waiting for a GP appointment.

if you don't want to use the bicarbonate as a mouth wash , I put a small amount on the end of my toothbrush with my normal toothpaste.

Hi noni9

Have you ever had a problem when you were younger with abnormal cells after a smear test I think the hpv virus is linked with olp and ls

I asked my oral pathologist re: OLP & link with HPV , she said there is no scientific link. She is even sceptical of the HCV link. However that's her personal opinion- I'm not sure I agree.

I think there's a genetic predisposition to autoimmune disorders (ie.allergies)... perhaps it may be triggered by hormones as OLPs highest population is middle aged women. Personally I believe in the HCV or some other virus must play a role.- I have had both HCV & HPV in my lifetime.

It's a lifelong condition since there's no cure. It requires a complete lifestyle change. It's VERY frustrating.

I recently underwent a prolonged period of excruciating pain and emotional stress that triggered a really intense episode of ulcerative colitis. I was treated with 3-1/2 months of steroids (to no avail), and had intense flare up of herpes simplex2. (No sex for 35 years.) This has been going on for 10 months constantly. Throughout this time, I have recurrent episides of oral lichen planus. So, I'm trying to figure out which of all these factors triggers the OLP. It is so painful. And nothing seems to help. Sometimes I wake up in the night due to the pain. Just ordered a bunch of tea tree oil oral health products. Hope they help.

I have hpv in my anus. Was diagnosed with hpv anal cancer in situ. Totally excised. Good biopsies for many years since.

Thank you, Catherine.

Someone else suggested soda and coconut oil as toothpaste. I think it's worth trying.

One thing I've noticed, a number of the auto-immune disorders I have also have support groups in the U.K. I'm English/Welsh/Irish. Thinking maybe there is a predisposition link.

Hi Trudy

Thankyou for your reply... I really do think there is a link..when I asked my doctor he just kind of dismissed it and changed the subject ended up putting me on antidepressants.. for which I have come off recently..how old are you Trudy? I'm 59 this year.. had a lot of stress over the last 3 years after a long marriage my husband cheated and so I went through a divorce which as been a nightmare...I was diagnosed with olp about 15 years ago by my dentist, didn't even know I had it then no symptoms at all only the white bits in my mouth and around that time had colposcopy for abnormal cells after a cervical smear but didn't think any more if it then till a few years ago when I started with the symptoms. Did you have colposcopy!!

Hi Noni

Sorry to hear this so glad you've been clear since.. how long ago was that? Hope the treatment wasn't so bad.

Yes, I've had several colonoscopies over the years. I started having symptoms of auto-immune deficiencies many years ago. And was diagnosed with ulcerative colitis after a couple of years of my symptoms being dismissed by doctors. I do a lot of research on line and the results plus my personal experience cause me to think the doctors don't know everything.

Thank you. Several years now. I've been vigilant about keeping up with my annual biopsies.

I know what you mean Naomi..I am in the UK... I mean colposcopy that's different to colonoscopy... the colposcopy is if there's any abnormal cells after a smear test usually caused by the hpv virus.thats a cervical smear...

I had a partial hysterectomy in 1978. So, I haven't been very regular in doing Pap smears. I've never had a positive smear.

Oh I see... us ladies have that many complications... it's really good to talk with you naomi.. I meet up over here with a few lovely ladies and it's good we all have each other... hope your having a good day

Why was your hysterectomy Naomi was it because of abnormal cells

No. I had a prolapsed uterus. I was really tired of child bearing at the time. Not sure if it was the best decision, but they can do so much more now. Think some doctors have experimented on women to gain knowledge tho'.

Thank you for your support.

I have swished with dissolved prednisone for 10 mins when I have a bad outbreak and prednisone is cheap

Does it come in a liquid form, or do you have to dissolve tabs?

Thanks for the info.