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Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #236185 07/07/12 01:57 AM
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In my late teens it was wrist pain and back pain -I had surgery on both wrists for something similar to carpal tunnel. It didn't fix the pain.

I have had Iritis twice, once in each eye consecutive years. I was tested for Lupus and nothing turned up. I keep thinking of the first time I met a rheumatologist and he found something (the B27) but told me it was nothing.

2 years later my dad shares with me his struggle with this disorder. Gave me pamphlets and I thought nothing of it (I found them recently after having a doctor suggest my symptoms indicated ankylosing spond).

Another 2 years and my hip pain is increasing in frequency and severity -both hips, now primarily in the left hip. My wrist pain also flairs up when my hip is flaring. Pain is in my back now and neck as well. Sharp pain, constant. And it moves up and down it. Sometimes it makes me stop before I can keep moving due to pain.


Jenn - - - 26 yo Student (masters program in Special Education). Mom to a puppy beast and 2 cats. Married to a supportive husband.
Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #236270 07/08/12 10:03 PM
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Hip pain .its not the same hip it jumps around .shoulder pain ,knees swelling , neck pain and stiffness ( new) ankle tendons ( all) ,back pain and stiffness all the time ,pain in my chest in the bone , and pain rite in side my bones mostley my legs ake like crazy almost to the point that I almost cry . Pain seems to pop up in new places all the time .Sorry if this is not what your looking for .

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #236290 07/09/12 04:59 AM
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Hi


*Deep pain in buttox ("sit bone")
*Hips feel like they are in a vise grip by late afternoon
*numbness elbow to pinky finger
*heel pain
*Some excersize helps but is difficult to do
*Trouble sleeping
*Fatigue
*feeling of wanting to slouch all the time
*brain fog comes and goes
*pain radiates down back of leg from buttox

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #236791 07/14/12 06:06 AM
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Where to start????
Looseness in joints from birth
Hip pain from age 5
stiffness in neck from age 17
rupturing tendons
plantar and palmar facsiitis
swelling in hips
pain and numbness in lower back down to feet
extremely dry eyes, mouth and skin
endometriosis
scar tissue in uterus
prolapsed uterus
preeclampsia
hysterectomy due to uterus detaching
ovarian cyst
asthma and frequent bouts of pneumonia
Kidney failure, left kidney did not survive


Annadair, diagnosed in 08, symptoms since birth,I have as and polyathritis. several family members also have as, including my 19 year old son. I'm not currently on meds. I stopped a year ago feb., after being on remicade just a few months due to kidney failure and sepsis. Currently on Restasis, meloxicam, tizanidine, metaxalone, hydrocodon
Newly diagnosed with AS
fall_of_moonbeams #236954 07/17/12 12:50 AM
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I am a 49 year old female. I have suffered with serious back and hip pain for over 20 years. Five years ago I had a total rupture of the disc at L5/S1 level that went undiagnosed for about 8 months. When I finally saw my surgeon, he ordered a specific mri to that level, (three other mri's and 2 nerve conduction studies were normal) and that's how it was detected. Despite months of intense pain, drop foot and numbness. The numbness is still with me. The nerve had stayed compressed too long. Six months after my first surgery, I fell on some ice and pain from that persisted. Mri showed 2 pieces of bone touching some nerves. Had my 2nd back surgery. For years prior to surgery, I always had lower back pain and serious left hip pain. My surgeon said the hip pain was referred from my spine. When recovering from the second surgery, my hip and groin pain worsened. Also had alot of si joint pain, which I have had for years. Lower back pain was always there, varying in intensity. Surgeon proposed a two level lumbar fusion. He also ordered a discogram which was positive at the two levels in question. With this result and continuing pain, I went ahead with the fusion. Very difficult recovery in it's own right, but since fusion (it's been three years now) my left hip almost immediately started hurting constantly along with constant groin pain. Si joints have always been bad, but never like this. Has also gotten worse since fusion. With the hip/groin pain becoming intolerable, my surgeon said "maybe you do have a true hip injury" and sent me to a hip specialist in his group. This Dr recommended PT, which I kind of knew was not going to help and to return in 6 wks...after six wks of PT and no improvement, he ordered a arthrogram of the hip. Not a fun test, but during the procedure, unknown to me and the radiologist, he had mistakenly nicked the femoral nerve with numbing agent. Not knowing, I went to get off the table for the mri, and I had no control of my leg and fell directly on my knees and then forward to my shoulders. They said this had never happened during this kind of procedure. After 4 hrs in the er, at the same hospital, my knees were bandaged xrayed and I was sent home. When I followed up with my hip specialist he told me they had used too much dye during the procedure and it was difficult to read. But, otherwise he saw no injuries in the hip. For months after the fall, my left knee and right shoulder hurt almost constantly. Along with my hips/spine/groin and lower back pain. Turns out I needed surgery to repair ligament damage in my knee and my shoulder had an arthritic fracture....a fracture that my surgeon said was very rare. Had only seen one other fracture like this in a shoulder....in his words "and I've repaired alot of shoulders". My shoulder surgery was exceedingly painful, but after a long healing time, it really doesn't bother me too much anymore. My knee (knees) are a different story. Surgery was over a year ago and it hurts more than before surgery. Constant throbbing and swelling, daily. Another specialist I saw, in yet another attempt to fix my hip/groin and SI joint pain, sent me for a myelogram. This test revealed bilat sacroillitis and he was the first one to suggest AS and sent me to a rheumatologist. This Dr said that before he started me on serious meds for AS, he wanted to do another mri of the si joints. This test was negative. I was also neg for the HLA-B27 and he wanted to diagnose me with fibromyalgia. I know this is a true disease, but I know I don't have fibromyalgia. Given my long history of lower back/hip/groin and the myelogram that did show bilat sacroillitis, along with other symptoms that are very common in a person with AS, my pcp made the formal diagnosis of AS. He started me on sulfasalazine 2 months ago and so far this has only helped the pain in my ankles and feet. No change in pain anywhere else. Four months ago, I started having mid back pain. Just dull, aching and sometimes clenching and grabbing. I have never had this kind of pain before. I can no longer stand for longer than 20-30 minutes the back and hip pain becomes so intense. I never sleep more than 2 hours at a time. I can't sit too long. Mornings are awful I can't believe it's gotten this bad. I can only manage to go for quick trips to the store and it causes such pain that it takes the rest of the day in pain. I am on a loa from my job. Have no idea when I can return. No social life anymore. I can relate so much to others that have written on this forum. I am miserable. How long can a person go on with this kind of pain and so little sleep?? This history that I've written is actually very abbreviated. I have had no end of tests, surgeries and pain. Now, I think I do have AS, and I have to start with a new complex diagnosis?? Just looking for advice from anyone.
Thank you,
Melissa

Last edited by Melissaj; 07/17/12 01:03 AM.
Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #237302 07/22/12 04:41 AM
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Hi

Inflamation of eyes, particularly in the am
Feel like I have the flu for 1-2 hours after waking in the morning..the more I sleep, the worse I feel
3 disks in the lowere back in the process of fusing
lesions on my pelvis
lost two inches in height in the past 5-10 years due to spinal curvature and deterioation
severe pian and numbness in lower back and hips
pain and inflamation in elbose, knees, neck
continual pain in right achilles tendon
significant asymetrical hearing loss in both ears
increased "burning" pain and numbness in lower back and hips with prolonged walking or standing
Neuroligical symptoms such as memory loss and dyslexia
Fatigue..require more rest

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #237958 08/01/12 05:05 PM
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does any one have pain in neck but in nthe front nof neck and sides of the neck like someone is pressing you and choking you all the time i can move my neck and all but this pain is everday doctor give me anti analgetic but nothing helps???

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #238288 08/07/12 04:23 AM
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Psoriasis scalp
Eye dryness/pain
Jaw pain
Adult acne occasional
Sensitive teeth to cold/heat/hard foods
Mouth sores
Neck pain
Left and right shoulder pain with calcium deposits
Occasional mud back and left side pain
COPD
asthma
Swollen tonsil chronic
Bilateral,horrible, hip pain that goes all the way around hip but,bursars can't touch or I cry
Butt pain sciatica
Left leg pain -sciatica behind knee keeps me from sleeping
Left knee pain and weakness
Bilateral back of heel pain-horrible!!
Occasion hand weakness/stiffness
Irregular periods
Ganglion cysts in wrist/heels
Depression
Can't sleep due to pain
Clostraphinic now???
EXHAUSTION 24/7

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #238289 08/07/12 04:34 AM
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Forgot the butt cheeks both sides
Tailbone can't touch. Think bursitis there?
Upper back, as well as, both shoulders and the neck
Vision loss
Memory loss
Retaining current conversation info not so easy
Lower back is an ouchy!
Agitated much easier-lower tolerance

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #238950 08/17/12 05:55 PM
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Hi. I'm new here. Frustration has sent me searching the internet for an answer to my latest symptom which was diagnosed today as Indocyclitis. Inflammation of my right eye. (especially in the morning) The eye Dr. kept asking me if I had arthritis or auto-immune disease, my response was no. I had always suffered from back problems even as a young nursing student. (It runs in my family) When I was 40 years old (14) years ago, I was hurt at work and herniated two disks in my lower back. Since then, I have suffered, been to doctor after doctor after doctor for help, relief, some sort of answer. At one point, Last year, I had another MRI and on the diagnosis was written "Spondylitis". I was sent to an Orthopedic who once again poohed poohed my symptoms and told me to get an injection of cortizone in my back. Which I did. It helped for a while but the pain can strike randomly from doing nothing at all but getting up in the morning. Nothing about Spondylitis was ever mentioned again. I have pain in my hips and my groin all the time. Stiffness in the a.m. to where I've had to be helped out of bed. And I've just learned to live with the pain, I guess. I take a lot of aspirin because that seems to help me the most (over tylenol or ibuprophen) but that led to stomach ulcers. I keep having recurring bladder infections also. With this latest diagnosis, I have to ask if I was diagnosed by one Doctor with Spondylitis, why hasn't any of the other doctors taken that seriously? What I have with my eye now is indicitive of this disease and the more I have read on your message boards, not uncommon. How do I go to my Doctor and Ask for help? I'm so afraid they are going to view me as a "Drug" seeker because unfortunately so many people have abused the system looking for Narcotic pain medication. I have not. I have tried PT, injections, exercises.. with little results. I just want answers and some relief. I am only 54 years old and there are days I feel like 90. Not to nice to share, but if I try and wipe myself and turn a certain way, I have horrific pain in my rib cage. I'm just tired of living in pain and I can't seem to be taken seriously. Which is very very frustrating. My family see's what I go through on a daily basis, even my primary care physician can see it. But they send me to specialists who don't seem to see anything wrong with me. It's almost like if they can't operate, they are not interested in me. They do see degenerating disks, spinal stenosis, and herniated disks, but again, the remedies thus far that I have been given for those things is not really helping.. I would appreciate any suggestions. Thanks for listening.

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