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#274420 - 05/08/16 11:52 AM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Paul2 Offline
Registered Visitor

Registered: 04/28/16
Posts: 16
Well I told ya I would follow up. Surgery scheduled in a few weeks on foot again Big spur located exactly where the last surgery was preformed. More results this week.

#274485 - 05/12/16 08:23 AM Re: Spondylitis Symptoms - List Your Symptoms [Re: Roccdeezy]
Kel0814 Offline
Registered Visitor

Registered: 06/02/13
Posts: 12
Loc: KY
I have ALL the same symptoms you do! VERY good at hiding pain with 3 kids and demanding job!
I started COsentyx last week- Heres hoping to a pain free life!
Diagnosed in 2009 with AS, Female, age 39
Tried all the Biologics, started COSENTYX last week- here's hoping

#274589 - 05/17/16 07:10 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Geoff2016 Offline
Registered Visitor

Registered: 05/13/16
Posts: 2
Loc: NC
Glad I found this group. This is my first post. I was Dx'd HLAB27+ in 1992 after 6 years of sciatica and hip pain. Here is my current list:

- SI joint is bilaterally fully ankylosed (per most recent X rays one year ago)
- Sporadic waking locked up and early AM stiffness
- Hip and SI stiffness and pain
- Currently having another Uveitis flare (I've had a bunch in the past) - past uveitis left pigmentation on my lens
- Past chronic heel spurs and tarcel tunnel corrected with custom orthotics (tried regular orthotics and cortisone shots - didn't touch it)
- Colon ulcers (not yet full Crohn's) currently treated with sulfasalazine
- Rheumatologist wants me to take feldene only as needed since it is unclear if this contributed to ulcers - without the feldene I feel 50 lbs. heavier
- Dragging - tired - fateeeeeg

Thanks to admin. for approving me for this forum.

#274728 - 05/25/16 04:47 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Utah_Jay Offline
Registered Visitor

Registered: 05/24/16
Posts: 18
Loc: Utah
Hello Forum - this is my first post after reading these forums for years I figured it is time to sign up. My symptoms are as follows.

Around 1999 severe foot and ankle pain. Couldn't walk without a large amount of Ibuprofen. Took around 16 pills a day to get through the day. Did this for a couple of years before seeking help from a professional to find out what was wrong.

Pain then moved to lower back. Couldn't sleep in a bed, slept in a lazy boy recliner for several months.

First meds were Sulfasalazine - 4 pills a day with Naproxen as needed. I didn't need much as the Sulfasalazine did great. Around 2003 - I forget the year my doc suggested enbrel. Have been on it since. Went full remission for several years.

Tried Humira a couple years back due to an insurance change but it did not work, at least not for long. I would feel good for about 4 days but would require another shot. Got Enbrel approved again and it works. Supposed to take 2 shots a week but usually only do 2-3 shots a month and it works fine.

My main issues nowadays are limited neck movement from side to side and occasional hip pain - mostly when I sleep - I blame the mattress for this though since I don't seem to have it when I travel.

I am/was an avid runner but it is getting harder to do. Recently had swollen lymph nodes for over 4 months and was worried I may have developed something from the Enbrel. Went to a specialist and had a CT scan. All was good. Then more recently have developed some nervous system disorders. The scare with the lymph nodes and now the nervous stuff I am getting off enbrel. Just not worth it for me in my opinion. Going to try and go back to the Sulfasalanzine with meloxicam. Going to give it 6 months and see where I am at.

Anyways, hopefully I can provide some insight on these forums as I have been reading them for several years and have been dealing with this awful disease for 18 years.

#274805 - 05/31/16 08:15 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]
Olive Offline
Registered Visitor

Registered: 05/30/16
Posts: 2
Loc: Maine, USA
Pain in Cervical Spine and Lower Spine
Inflammation of SI joint
Dry Eye, Iritis
Degenerative Discs
IBS and Diverticulitis
Gall bladder disease
Acid Reflux
Facial Palsy
Brachial Plexus Neuritis
High Sed Rate
MS like episodes with sensory nerve damage
Blurred vision and rapidly changing vision
Pre melanoma moles

Undiagnosed for AS or RA, MS, Lyme, Lupus

#275008 - 06/18/16 04:16 AM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]
Olive Offline
Registered Visitor

Registered: 05/30/16
Posts: 2
Loc: Maine, USA
Hi, first post here. I've had the following symptoms for about 25 years now, some worse than others at any given time. They are always either active or just St beneath the surface. Here I go...
Widespread muscle aches and pain
Back pain in neck and lumbar
S/I joint inflammation, both sides
Bells Palsy and facial numbness
All my teeth ache at the same time
2 episodes of Brachial Plexus Neuritis. Both arms
Burning and tingling in both feet
Heaviness in feet
Very poor balance
Severe spacial dizziness in left eye
Left eye pain and fatigue
Dry eye
Diverticulosis and Diverticulitis, leading to bowel resection
Brain fog
Pre diabetes
Weight gain and loss
Anaphylaxis from NSAIDS
Severe Raynauds Syndrome
Adult onset asthma

Tests for all RA and Autoimmune diseases are negative, 3 Lyme tests negative, low vitamin D, High Sed Rate and CRP, positive on 16 fibromyalgia tender points, degenerative discs and joints on X-rays and MRIs

Edited by Olive (06/18/16 04:19 AM)

#275124 - 06/25/16 06:56 AM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
lilone Offline
Registered Visitor

Registered: 06/16/12
Posts: 27
Loc: colorado
Hey guys its been awhile since I have been on here.

I have some new issues I could use some insight on, I am not really sure where to turn to.

I was diagnosed with undifferentiated spondylitis a few years back, for several years i have been doing great in remission, pretty much symptom free besides minor aches, stiffness, fatigue. However, a few weeks ago something happened. The left side of my face went numb then a week later I felt woozy and drunk, I went to the doc who sent me to a neuro, and I am still waiting on any answers. These symptoms are progressively getting better but not completely gone, three weeks in. I have never had any issues with my spine as of yet, being abnormal or disks moving/ pinching, so I am curious if this is something that happens with spondylitis. or if it could be something different.

I appreciate any insight or direction you can give.

Edited by lilone (06/25/16 07:04 AM)

#275126 - 06/25/16 12:34 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1604
Loc: MS
Lilone, I suggest you start a new thread for your question. This thread is more for people to just list their symptoms, and at 90+ pages, your question is going to get lost. smile
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

#275598 - 08/05/16 11:35 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]
KayF Offline
Registered Visitor

Registered: 07/11/16
Posts: 63
Loc: Florida
Low back pain that wraps around my hips and up to mid spine.
buttock pain, thigh and inside thigh pain. left shoulder pain and left hand and wrist weakness, left kne pain and swelling, left foot and heel pain with stiffness in ankle .My left foot feels different to me than my right . datigue like crazy, hot flashes and sweats, tired tired tired, too much stiffness and pain after sitting even for a sort time.
It will get better. Starting first round of remicade on the 15 th. I feel like it is Christmas and I am getting a present.

#275615 - 08/08/16 08:45 AM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]
Anja Offline
Registered Visitor

Registered: 07/26/16
Posts: 7
- extreme fatigue and body aches (constantly feel like I have the flu)
- frequent, low-grade fevers
- cold intolerance
- mouth sores
- dry eyes
- swollen knees, ankles, fingers
- chronic acute pain in sit bones (SI joints), hips, sternum/ribs/collarbones, wrists, hands, elbows, knees, feet
- difficulty sleeping
- morning stiffness, especially in hands/hips/back, for 3-4 hours
- frequent cavities
- extremely sensitive skin
- anxiety
- major depression

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