1. < Autoimmune Diseases

Sjogren's and small fiber neuropathy: Seeing a rheumatologist

Posted by penn @penn, Mar 7 2:45pm

WHEN I GOT OUT OF THE CAR TO GO INTO THE HOSPITAL FOR A PROCEDURE I COULD HARDLY WALK ALL OF A SUDDEN?? MY HUSBAND HAD TO HELP ME????? IT BECAME SO BAD THAT THE NURSES HAD TO HELP ME TO THE BATHROOM, HELPED ME SIT DOWN??? IT WAS VERY BAD! NURSES SUGGEST I NEED TO SEE MY RHEUMATOLOGIST AS SOON AS POSSIBLE, THEY SUGGESTED IT WAS THE SOJGREN'S SYNDROME. WILL SEE DR. IN A FEW DAYS FROM NOW! ANYONE EVER HAD THE SAMY SYMPTOMS??

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sbtheplumber1 | @sbtheplumber1 | Apr 19 2:03am
In reply to @penn "You don't have that horrible pain from tail bone, groin down? Small fiber neuropathy." + (show)
@penn

You don't have that horrible pain from tail bone, groin down? Small fiber neuropathy.

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@penn thanks for sharing about tailbone pain! I had a failed back surgery and have had the tailbone pain since. I told the surgeon I could rub my tailbone and the pain radiates straight to my testicles and not even get me out of a wheelchair said I don’t that. I did find out a fusion screw is loose but leave it alone so I had a stimulator put in . I carry a cushion everywhere I go to set on! I’m going Tuesday to my Rheumatologist about my Sjögren’s and see if she says anything about it. I’ve went thru pelvic therapy and found out when the pelvic is out of alignment my bowels won’t move. And the strange part when I had the stimulator put in in January for 4 days before I pulled the wires loose my bowels moved normal then went back to who knows what the next bowel movement might be next time ! I had the stimulator redone last week and I go Thursday to have the staples removed and stimulator turned back on again.

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1 reply
penn | @penn | Apr 19 10:24am
In reply to @sbtheplumber1 "@penn thanks for sharing about tailbone pain! I had a failed back surgery and have had..." + (show)
@sbtheplumber1

@penn thanks for sharing about tailbone pain! I had a failed back surgery and have had the tailbone pain since. I told the surgeon I could rub my tailbone and the pain radiates straight to my testicles and not even get me out of a wheelchair said I don’t that. I did find out a fusion screw is loose but leave it alone so I had a stimulator put in . I carry a cushion everywhere I go to set on! I’m going Tuesday to my Rheumatologist about my Sjögren’s and see if she says anything about it. I’ve went thru pelvic therapy and found out when the pelvic is out of alignment my bowels won’t move. And the strange part when I had the stimulator put in in January for 4 days before I pulled the wires loose my bowels moved normal then went back to who knows what the next bowel movement might be next time ! I had the stimulator redone last week and I go Thursday to have the staples removed and stimulator turned back on again.

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I hope things go well for you, sincerely.
My pain is so bad I can't sit in a car to go to my drs. Nothing works even with my pain pump!! I don't know of a pain medication that gets me out of the house?????

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2 replies
artemis1886 | @artemis1886 | Apr 19 10:27am
In reply to @penn "You don't have that horrible pain from tail bone, groin down? Small fiber neuropathy." + (show)
@penn

You don't have that horrible pain from tail bone, groin down? Small fiber neuropathy.

Jump to this post

I have had four left hip replacements actebulum fracture and it fractured the pubic ramus. I have had a right hip replacement and might need another one.
I have had problems with my SI joint that I have had a right and left rhizome. That’s where they burn the nerves last about two years. I was diagnosed with osteoporosis and avascular necrosis due to prednisone for my asthma.

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penn | @penn | Apr 19 10:28am
In reply to @penn "I hope things go well for you, sincerely. My pain is so bad I can't sit..." + (show)
@penn

I hope things go well for you, sincerely.
My pain is so bad I can't sit in a car to go to my drs. Nothing works even with my pain pump!! I don't know of a pain medication that gets me out of the house?????

Jump to this post

Issue, can't move bowels no matter what Ii take?????

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2 replies
sbtheplumber1 | @sbtheplumber1 | Apr 19 11:10pm
In reply to @penn "I hope things go well for you, sincerely. My pain is so bad I can't sit..." + (show)
@penn

I hope things go well for you, sincerely.
My pain is so bad I can't sit in a car to go to my drs. Nothing works even with my pain pump!! I don't know of a pain medication that gets me out of the house?????

Jump to this post

@penn have you tried the Salon Pas patches or roll on. I’ve noticed there’s days pain meds don’t seem to help at all and I use the roll on and get more relief with it. The patches work but you can cover more of an area with the roll on. I understand riding in a car without the seat cushion I can’t ride in a car and with it is a struggle since the wife likes to hit every pothole!

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1 reply
sbtheplumber1 | @sbtheplumber1 | Apr 19 11:13pm
In reply to @penn "Issue, can't move bowels no matter what Ii take?????" + (show)
@penn

Issue, can't move bowels no matter what Ii take?????

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@penn have you tried Ollie pop for your bowels it’s a prebiotic most flavors aren’t bad?

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1 reply
penn | @penn | Apr 20 9:59am

I never heard of that. Thank you I'll look it up.

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penn | @penn | Apr 20 10:02am
In reply to @sbtheplumber1 "@penn have you tried the Salon Pas patches or roll on. I’ve noticed there’s days pain..." + (show)
@sbtheplumber1

@penn have you tried the Salon Pas patches or roll on. I’ve noticed there’s days pain meds don’t seem to help at all and I use the roll on and get more relief with it. The patches work but you can cover more of an area with the roll on. I understand riding in a car without the seat cushion I can’t ride in a car and with it is a struggle since the wife likes to hit every pothole!

Jump to this post

Boy did you take my pain away with your message!! I like and enjoy a good sence of humor! You get 100 STARS!!!

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ladysullivan22 | @ladysullivan22 | 6 days ago

Ive had Sjögren's for at least 30 years symptoms began to manifest themselves when I was 33 years old. I'm going to be 82 on May 22nd
I guess Sjögren's has different symptoms based on how your body is made up. The only symptoms I have during a flare in Dryness: Eyes, mouth (exceptionally DRY), skin, scalp, vaginal, You name it it's dry! My biggest problem is Myasthenia Gravis!

Wish I could have been more helpful...
B. Sullivan
Upstate South Carolina

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