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Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #242284 10/17/12 08:24 PM
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Hello,

I am new to this forum/message board and new to this disease. So I apologize if this isn't the right place to post my story.

I am 21 years old and have just recently been diagnosed with spondyloarthropy. I have had symptoms since I was 18, as well as other medical and psychological problems. Because of these other various problems, my joint complains were over looked, disregarded, and misdiagnosed. I am now healthy and free of those problems, with the exception of severe pain and fatigue that seems to be getting worse by the day. I was finally diagnosed with the vague "spondyloarthropy" a couple of weeks ago.

Although I am thrilled that someone has finally taken my complaints seriously and given me a name for it, I am very confused and overwhelmed about the disease in general. I don't even know what my particular type of arthritis is, and therefore I don't know how to research it. I am one of those people that extensively researches etiology, common symptoms, treatments, prognosis, etc. on anything that a doctor suggests. I need to know everything I can about what is going on with my body, and how to make it function at the most optimal level that is possible for me.

So I guess I'm joining this message board for a few reasons. 1) To learn about this disease. 2) To find and talk to others that are as miserable as I am. 3) To find what has worked for people so that I can give it a try.

My symptoms are as follows:
-low back pain/stiffness
-neck pain/stiffness
-bilateral wrist pain/swelling
-pain in most knuckles
-left jaw pain
-left hip pain/stiffness
-bilateral shoulder pain
-irritable bowel
-fatigue
-headaches

Thank you to whoever may be reading this. It feels good just to get the emotions out of my head and into physical words. I would greatly appreciate any kind of advice, related symptoms or stories, helpful information or links, or encouraging/inspiring words.

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #242285 10/17/12 08:31 PM
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wow kate, what a long story for such a short life. i am so sorry you are suffering so. we have twins, and all the time we worry that our son has my dx, the AS, and our daughter has my hubby's dx, RA.

it is so awful having medical so young. i should know, i started at age 7, so, you have a sympathetic ear here. and also with the main forum, and the 20 something forum.

i wish we had had computers when i was young, might not have felt like such a medical freak child, LOL.

come on over to the main discussion forum and introduce yourself. most of us post the symptoms page as our first encounter and then jump in on topics of interest to us. you have a lot of valuable information to share and lots to learn from all the others in our situation and dx.

welcome, tho as many say, sorry you have to be here. it is a very good site with much information. read the info at the home button above and get a couple of the free pamphlets on the dx and exercise, etc. then join in.

note, this is to kate, but applies to all who post here, please come on over to the main discussion forum and let us know who you are.

prayers and peace, sequoia

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #242721 10/24/12 11:36 AM
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Plantar fascitis
Upper back pain between shoulder blades
Elbows-swollen very painful, wrists
Right knee
Ankles
Shins
Mental fog
Depression (moodiness)
Fatigue and generally achy all over

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #243033 10/30/12 02:10 AM
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welcome sunseeker, come on over to the main discussion forum, and join in the conversation. sorry about the elbows and wrists, must make it tough to be on the computer.

prayers and peace, sequoia

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #243173 11/01/12 03:35 PM
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I acquired AS from a fiance' with AS. It was not activated until I had my son. Now 26 yrs later I have the following cascade of related diseases & conditions.
1. Migraines
2. Severe Fibromyalgia
3. Hypo-thyroid
4. Spinal Stenosis
5. AS in lumbar & neck (pain & stiffness)
6. Focal Segmental Nephrosclerosis in remaining kidney.
7. Heart involvment
8. Osteo-Arthritis/AS in knees, ankles, feet & wrists & fingers
9. Bone spurs shredding rotator cuffs & growing elsewhere. *surgery temporary fix they regrow.
10. Recently I've been diagnosed with "Primary Hypogammaglobulemia" where my immune system is worn out from running on high for so long. I receive gamma globulin by way of 4 infusion needles in my stomach each week for the rest of my life @ $6,000 a month for this one med.

Is there anyone else with immune system problems?
None of these conditions were in my family, but inherited by my son.

*Also, because of my last kidney is diseased, I am unable to take anti-inflammatories or DMARD's.


Married to a wonderful man 23yrs, w/ a terrific son diagnosed with AS.

Acquired AS 28yrs ago. Severe Fibromyalgia, Migraines, Multiple system involvement: heart, remaining kidney (no nsaid's allowed), spine (+ spinal stenosis), neck, knees (Rcd total Rht knee replacement 7/13, Lft scheduled for 9/13), thyroid, etc... Medically retired from US Military.
Now recently diagnosed w/ Primary Hypogammaglobulemia to boot!
Re: Spondylitis Symptoms - List Your Symptoms Here
Jonathon #243184 11/01/12 05:24 PM
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You're problems sound all too familiar. I've been battling for 26yrs.
When the pain & disease starts to reach the overload stage, what's always worked best for me is thinking of my AS & pain as a seperate entity. You dig in your heels and decide who's going to run your life the pain & disease or you!
Also, it may sound simple... but I've always viewed life as a blue sky, sometimes gray clouds may obscure your view of the sun, but clouds always move on if you have the fortitude to wait them out.
Good luck & God bless.


Married to a wonderful man 23yrs, w/ a terrific son diagnosed with AS.

Acquired AS 28yrs ago. Severe Fibromyalgia, Migraines, Multiple system involvement: heart, remaining kidney (no nsaid's allowed), spine (+ spinal stenosis), neck, knees (Rcd total Rht knee replacement 7/13, Lft scheduled for 9/13), thyroid, etc... Medically retired from US Military.
Now recently diagnosed w/ Primary Hypogammaglobulemia to boot!
Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #243502 11/06/12 09:06 PM
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Hi. Im new here. 30 yr old female. I first learned about AS 6 yrs ago online while researching back problems bc my lower back kept locking up when i layed flat on my back. I remembered a school nurse in 7th grade saying it looked like i had mild scoliosis so that's what i was afraid of. I had many other what i thought were mild SEPARATE symptoms. And when i learned of AS I knew right away that it was the cause for all of them. It scared me. Ever since then i have been trying to forget it is happening to me. Wish it away. And now here i am trying to accept it so that i can try my best tp slow the progress of the disease. Pretending it is not there will only allow it to flourish.
This is a list of symptoms i had before and up to 25 years old or so:
Rib pain(growing pains lol) started when i was about 6 yrs old
Back pain and stiffness
Lower back started locking up when i layed a certain way when i was about 21
Almost always had fatigue
Strange problems including a 5cm cyst on my salivary gland which needed surgically removed in 2002 after my son was born
A very sensitive spot on the front of my right shin that sent a feeling of bolts of lightening through my body whenever it got bumped
Occasional days when i felt like i was walking on pebbles all day
Tailbone sensitivity/ pain
Cracking, popping joints everyday especially my sternum, knees, hips and neck and of course my spine
Insomnia
Memory problems
Morning stiffness( sometimes it takes hours for my hands to be able to get a good grip on things)
Diarrhea on and off
Irregular periods
Sometimes i couldn't take a deep breath. I would be desperate for a deep breath but its like i could only manage short, satisfying breaths without feeling like i was being stabbed in the rib. What's funny is the spot i feels like important being stabbed in always changed places each time it happened. I had thought my lung collapsed or i was having a heart attack when it was severe
Huge big toes with thick, cracking toenails
Ridges in fingernails
General achiness (occasionally) in bones. Again, the pain would switch places often
Up until this time i had no clue these symptoms may be related. Thought i just had really bad luck
Here are my symptoms now after pretending my body wasn't attacking itself for 6 years:
All previous symptoms still exist and some are worse
Completely sporadic periods(sometimes i go up to 2 months without one, but usually they are myfrequent..up to 3 per month)
Diarrhea with constipation? Almost everyday
Trouble breathing everyday
Bottom few vertebrae obviously fused
Hip pain. Feels like important being stabbed deep in my right hip from the side
Pain in both knees, left knee has locked up completely. I couldn't strained it and it hurt so bad and looked almost dislocated. Ever since then it hasn't felt right. Important afraid to bend it
Some kind of growths attached to the insides of my eyelids( idk cysts, bloodvessels? I can no longer wear contacts
Sensitivity to light
If i don't switch positions often i get sore. My back mostly. I cannot keep my elbows bent very long. Hard to explain its like i can't get comfortable
Hand cramps when i write
Dizziness and lightheadedness.
Im sure there is more im forgetting but you get the idea.
And the weirdest part is that some days im fine
Anyway i wanted to share one way i have found relief for back pain stiffness. Its called a foam roller. its a foam cylinder found in the fitness section of department stores. It is used for exercise routimes to loosen muscles. I sit on the floor with the roller behind me and slowly lay back with my spine curves around the roller. Be careful if you go too fast it can hurt. Then when you feel ready slide back and forthforth on it. So much relief

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #243569 11/08/12 02:57 PM
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welcome gidget and shmeph..you both have a lot of symptoms and a great deal of misery. you must now know that you are not alone. we have extreme cases here as well as both of yours. come on over to the main discussion forum and introduce yourselves.

jump in on topics that you can relate to or better yet, start a new one and tell us more about your journey.

shmeph, have you been dxd (diagnosed) with ASs and if so, is there any meds combo you are able to take which might alleviate some of the symptoms.

do either of you try to work with such extreme symptoms.

i am so sorry you are both suffering so. this is not a dx for wimpy folks, right?

prayers and peace, sequoia


Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #243914 11/14/12 05:44 PM
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24 yrs old. Diagnosed at 6, went into remission, came back at 20 and has not went away. Wrongly diagnosed with RA, recently diagnosed with AS...
lower back pain
neck stiffness
a new, recent pain in my wrist (mostly the thumb muscle) and fingers -cant be good
Main source of pain in both knees and hips
swollen ankles
constant reactions to my Remicaid infusions
sometimes cant breathe well (scary feeling)
Huge swelling of the elbows and shoulders
Jaw pain in chewing or coughing or opening mouth in any way.

This disease has already wiped out both hips. I just recently (Sept 10th 2012). I just recently had complete left hip surgery and now have a titanium hip. Doctor said that the xrays show that my right hip is also deteriorating and will soon also be replaced with titanium

So will soon have 2 hip replacements and still do not feel much more improved in regards to bone pain...I feel as if my whole body will need surgery because its only a matter of time before this disease destroys all my tendons!

24 yrs old-Boston, MA - trying my damnest day-to-day to keep my job and stay employed, have dreams of a house with a comfortable lifestyle and independence, tough to work with this disease, have a lovely gf and try to live every day with an optimistic attitude.

Thank you for listening

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #244048 11/17/12 08:56 PM
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bless you john. what a tough life. i, too, have had many medical problems since i was young. i know that can scar our outlook while others around us are healthy and play normally, etc.

but, you and i are still here making our contributions to the happiness of others! LOL, but not really. we do have a different perspective and you will be valuable to this forum. just jump in on other topics on the main discussion forum, or any other forums which strike your interest.

welcome here, you belong and have lots to offer. i bet you were dxd with juve RA. they knew basically nothing else. so, take care of yourself and that lovely of yours and glad you are here.

prayers and peace, sequoia

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