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Re: Can’t Walk [Re: Sean O] #282608
02/11/19 03:13 PM
02/11/19 03:13 PM
Joined: Apr 2016
Posts: 67
Boston, MA
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Miguelito Offline
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Posted a similar message elsewhere...In my experience, not being able to place weight on a leg because of the pain was due to arthritis in my hip, not SI joint fusion. Have you had your hips x-rayed recently?

My SI joints are completely fused, but the only times I was not able to walk at all was because of pain in the hip (though you generally don't feel the pain as coming from there). Once my hips were replaced (in particular the right in 2012) I have never not been able to walk. My lower back can be horribly painful (during a bad flare), but I can always still walk.

Mike


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Can’t Walk [Re: Sean O] #282627
02/12/19 03:18 PM
02/12/19 03:18 PM
Joined: Sep 2007
Posts: 294
Toronto
Sean O Offline OP
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I should clarify that when I say I can’t walk it is due to the pain on putting weight on my right leg. The nerves running down my leg are all fine. I am using a cane but sometimes it doesn’t cut it. And sometimes just lying down the pain in the SI joint is terrific.


Male, early 50s, Dx AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Off NSAIDs due to stomach issues. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Small bowel issues, anemia.
Re: Can’t Walk [Re: Sean O] #282633
02/13/19 03:52 AM
02/13/19 03:52 AM
Joined: Jan 2016
Posts: 51
Joshua Tree, CA
jtmak Offline
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Hi Sean, Is your pain when walking consistently thru the day? Early on with my AS I would have extreme pain (si joints) when i would stand up from sitting or lying down. I literally kept my hip bent at maybe 35 degrees and rock onto my toe since it hurt too much to put my foot flat and weight the whole foot.. So I
tip toe slowly propelling me forward. Slowly the si joints eased up allowing me to step onto the foot with less pain so i could walk without having to do my toe dance.


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: Can’t Walk [Re: jtmak] #282637
02/13/19 09:35 PM
02/13/19 09:35 PM
Joined: Sep 2007
Posts: 294
Toronto
Sean O Offline OP
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Originally Posted by jtmak
Hi Sean, Is your pain when walking consistently thru the day? Early on with my AS I would have extreme pain (si joints) when i would stand up from sitting or lying down. I literally kept my hip bent at maybe 35 degrees and rock onto my toe since it hurt too much to put my foot flat and weight the whole foot.. So I
tip toe slowly propelling me forward. Slowly the si joints eased up allowing me to step onto the foot with less pain so i could walk without having to do my toe dance.


That is what I am generally experiencing. The pain is at its worst when the one leg bears weight. It is also quite sore simply lying in bed. The pain is interfering with everything. I’m on a Caribbean cruise and am not getting off the ship much. The insurance okayed me to see the ship’s doctor but I am not quite there yet


Male, early 50s, Dx AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Off NSAIDs due to stomach issues. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Small bowel issues, anemia.
Re: Can’t Walk [Re: Sean O] #282639
02/14/19 12:35 PM
02/14/19 12:35 PM
Joined: Jan 2016
Posts: 51
Joshua Tree, CA
jtmak Offline
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Hi Sean, am so sorry to hear of your pain and that you're on a cruise experiencing this :-( . Long term, it'll be important to work with your doc re: the meds out there but given my misdiagnosis and lack of use, I'll let others' speak to the Rx path. The advantage of going 30 years misdiagnosed is is it left me to paying attention to how my lifestyle correlated with my sympoms. If your pain has increased, while on the cruise, you might inventory how your diet and routine has changed. Identify if you're eating or drinking differently than when home. Alcohol, soda or the other common treats (processed foods) found on cruises can contribute to inflammation within our gut and this can effect our entire body. In addition between your pain and being on a cruise, is your activity level on the cruise different than home? As noted by others and in my experience, movement can ease or improve joint mobility and pain. Maybe your cruise just became your Wellness Cruise? It can give you an opportunity to try someone else's food prep of fresh foods and to participate in low impact exercise? Yoga, spa, pool exercises or massages available? We need to be kind to our body during flare ups. Chair exercise programs can eliminate the need to going to the floor. Flare ups happen in this condition and its important to work with our body at each stage :-). Feel free to reach out if i can answer any specific questions. Good luck and believe; lifestyle makes a difference


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: Can’t Walk [Re: Sean O] #282715
02/27/19 11:57 AM
02/27/19 11:57 AM
Joined: Sep 2007
Posts: 294
Toronto
Sean O Offline OP
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Toronto
UPDATE Not spondylitis at all but likely spondylitis related.

Because I can’t walk and am in severe pain I ended up in emergency here in Toronto. An MRI showed cysts around the sacrum pressing on various nerves down there and giving me sacroiliac pain and causing weakness in my legs.

The doctor said it is likely related to the long term degeneration of the
Joints in that area.

Waiting for neurosurgery consult. And occupational therapy


Male, early 50s, Dx AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Off NSAIDs due to stomach issues. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Small bowel issues, anemia.
Re: Can’t Walk [Re: Sean O] #282718
02/27/19 06:05 PM
02/27/19 06:05 PM
Joined: Mar 2013
Posts: 2,140
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SouthernMoss Online
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Wow, Sean, you just can't catch a break, can you? Keep us posted.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Can’t Walk [Re: SouthernMoss] #282733
03/02/19 08:19 PM
03/02/19 08:19 PM
Joined: Sep 2007
Posts: 294
Toronto
Sean O Offline OP
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Toronto
Originally Posted by SouthernMoss
Wow, Sean, you just can't catch a break, can you? Keep us posted.


I had been discharged but It got worse and I went to emergency and they said it was cauda equina syndrome. Had emergency surgery and they remove two large cysts fro. The lumbar spine. Now I am recovering in hospital.....


Male, early 50s, Dx AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Off NSAIDs due to stomach issues. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Small bowel issues, anemia.
Re: Can’t Walk [Re: Sean O] #282734
03/02/19 08:31 PM
03/02/19 08:31 PM
Joined: Mar 2013
Posts: 2,140
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SouthernMoss Online
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Scary.

I hope the removal of the cysts resolves the problem for you. We have a member with cauda equina syndrome, but I haven't seen her post in a long time.

Let us know how recovery goes. How long will you be in the hospital?


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
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