does anybody have pain in hips and ribs and shoulder from AS

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istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/2/2007 9:01 AM (GMT -7)   
 
what are the symptoms for AS? i have stiff neck and spine and when i walk i have pain in hips and ribs. does seem to be AS symptoms. also ankles feel aches.
 
i know is difficult to dx AS blood test r negative im so frustrated and NSAID dont help anymore i have more and more pain in back and neck and fingers too... pls reply i will be so grateful

seechell
Regular Member


Date Joined Sep 2006
Total Posts : 362
   Posted 3/2/2007 9:52 AM (GMT -7)   

Hi-

I have AS also. My hips, knees, tailbone and lower back hurt all the time. It will radiate up in to my middle back and shoulders depending on the weather, my amount of activity etc. I've been on methotrexate, which helped a bit, but couldn't afford Dr. visits every 6 weeks for blood tests. I've been on sulfasalazine, which really helped but gave me mouth sores so I'm allergic to it. The only thing I take right now is 4-325 mg aspirin 3x a day. It's not helping much anymore but celebrex and the like don't do anything. So, I'm kinda stuck.

I'm HLA-B27 positive. Spondylo means spine and itis means swelling. So the pain is mainly in the spinal area but like I said, it radiates down and up depending on what I do.  

Good luck to you. I hope you find some answers.


Take Care,
               Chelle
    "God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference."
  DX: ankylosing spondylitis, periferal neuropathy, chronic migraines/headaches, depression/panic attacks, bi-polar, hypothyroidism, hypoglycemia, sleep apnea
  RX: synthroid, estradiol, prozac, lamictal, inderal la, klonopin, seroquel, imiprimine, aspirin, (relpax, maxalt, phenergan, esgic plus, xanax, PRN for migraine)
  Surgeries: hysterectomy 1997, tonsillectomy 2001, deviated septum 2005, cataracts (both eyes) 2006
 
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/2/2007 3:19 PM (GMT -7)   

istone, Keah posted the criteria used to diagnose AS in one of your other threads. The criteria are a list of symptoms and tests results used to make the diagnosis. You might wish to print them out. Are you having trouble understanding the terms used in her list? I think there are people here that could explain them using less medical words.

Here's the link to Keah's list: http://healingwell.com/community/?f=10&m=722984&g=739141#m739141


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, peripheral neuropathy, Sjogren's Syndrome
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/2/2007 3:42 PM (GMT -7)   
istone, I forgot to ask what your doctor said is the cause of your problems? Has he told you anything? Have you had any xrays? What did they show? Have you had any MRIs? Do you have copies of the reports of any tests that you have had? What do they say? And last question, have you gone to another doctor for a second opinion?

Hope you feel better.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, peripheral neuropathy, Sjogren's Syndrome
 


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 3/2/2007 5:02 PM (GMT -7)   
istone said...
what are the symptoms for AS? i have stiff neck and spine and when i walk i have pain in hips and ribs. does seem to be AS symptoms. also ankles feel aches.



i know is difficult to dx AS blood test r negative im so frustrated and NSAID dont help anymore i have more and more pain in back and neck and fingers too... pls reply i will be so grateful


Yes Iris,

Pain all over the body is a clinical characteristic for AS. Hips, ribs, ankles.. sholders are commonly affected.
Sacrolitis (inflamation of the sacral joints) is a very distinctive characteristic for all seronegative spondyloarthropaties to which AS belongs. RA alone do not have sacrolitis. The problem is that sacrolitis are often asymptomatic and can be seen only on MRI or bone scinthygraphy. Mine was detected that way.
Pain all over the body joints and joints surrounding tissue is clinical characteristic for all of the illnesses of the seronegative spondyloarthropathy group. When there are no visible changes seen on X-rays yet, when whole body MRI or scinthygraphy is done then a good rheumatologist should be able to define correct whether you have RA or seronegative spondyloarthropathy. Once it's defined that you have spondyloarthropathy then what exactly type of spondyloarthropathy you have may come out as a difficult task. But the pont is that....ah..I just mean that it don't necessary mean to have exactly AS.

Did you read my post at yr previous topic? http://www.healingwell.com/community/default.aspx?f=10&m=736834
If did not, then read it, it might be helpfull for you.
Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form occasional conjuctivitis outbreaks, mild arthritis, also showing some short lived mild aches all over the body

Post Edited (Marius123) : 3/2/2007 6:09:08 PM (GMT-7)


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/3/2007 6:01 AM (GMT -7)   

 

i didnt ask about criteria and i understand perfect english dont worry.

i asked about symptoms and is clear now.

Ides said...

istone, Keah posted the criteria used to diagnose AS in one of your other threads. The criteria are a list of symptoms and tests results used to make the diagnosis. You might wish to print them out. Are you having trouble understanding the terms used in her list? I think there are people here that could explain them using less medical words.

Here's the link to Keah's list: http://healingwell.com/community/?f=10&m=722984&g=739141#m739141



istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/3/2007 6:09 AM (GMT -7)   

hi Marius

thank u so much !

yeas i read your last post about AS. the point is that i dont know that i have .

i have pain in all my  joints. now is more in neck, back, hips and ankles,  shoulders too.

is so strange and is progressing more and more. im terrified. i will have an appt on rheum finally on end of march and hope to get a good rheum to dx me. when i have a shower and water falls on neck is so painful is like something  heavy stuff on my neck.

could be DISH on neck and AS on the rest of my body or OA? is a mistery

Marius123 said...
istone said...
what are the symptoms for AS? i have stiff neck and spine and when i walk i have pain in hips and ribs. does seem to be AS symptoms. also ankles feel aches.



i know is difficult to dx AS blood test r negative im so frustrated and NSAID dont help anymore i have more and more pain in back and neck and fingers too... pls reply i will be so grateful


Yes Iris,

Pain all over the body is a clinical characteristic for AS. Hips, ribs, ankles.. sholders are commonly affected.
Sacrolitis (inflamation of the sacral joints) is a very distinctive characteristic for all seronegative spondyloarthropaties to which AS belongs. RA alone do not have sacrolitis. The problem is that sacrolitis are often asymptomatic and can be seen only on MRI or bone scinthygraphy. Mine was detected that way.
Pain all over the body joints and joints surrounding tissue is clinical characteristic for all of the illnesses of the seronegative spondyloarthropathy group. When there are no visible changes seen on X-rays yet, when whole body MRI or scinthygraphy is done then a good rheumatologist should be able to define correct whether you have RA or seronegative spondyloarthropathy. Once it's defined that you have spondyloarthropathy then what exactly type of spondyloarthropathy you have may come out as a difficult task. But the pont is that....ah..I just mean that it don't necessary mean to have exactly AS.

Did you read my post at yr previous topic? http://www.healingwell.com/community/default.aspx?f=10&m=736834
If did not, then read it, it might be helpfull for you.


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 3/3/2007 11:45 AM (GMT -7)   
istone said...

hi Marius

thank u so much !

yeas i read your last post about AS. the point is that i dont know that i have .

i have pain in all my  joints. now is more in neck, back, hips and ankles,  shoulders too.

is so strange and is progressing more and more. im terrified. i will have an appt on rheum finally on end of march and hope to get a good rheum to dx me. when i have a shower and water falls on neck is so painful is like something  heavy stuff on my neck.

could be DISH on neck and AS on the rest of my body or OA? is a mistery

Marius123 said...
istone said...
what are the symptoms for AS? i have stiff neck and spine and when i walk i have pain in hips and ribs. does seem to be AS symptoms. also ankles feel aches.



i know is difficult to dx AS blood test r negative im so frustrated and NSAID dont help anymore i have more and more pain in back and neck and fingers too... pls reply i will be so grateful


Yes Iris,

Pain all over the body is a clinical characteristic for AS. Hips, ribs, ankles.. sholders are commonly affected.
Sacrolitis (inflamation of the sacral joints) is a very distinctive characteristic for all seronegative spondyloarthropaties to which AS belongs. RA alone do not have sacrolitis. The problem is that sacrolitis are often asymptomatic and can be seen only on MRI or bone scinthygraphy. Mine was detected that way.
Pain all over the body joints and joints surrounding tissue is clinical characteristic for all of the illnesses of the seronegative spondyloarthropathy group. When there are no visible changes seen on X-rays yet, when whole body MRI or scinthygraphy is done then a good rheumatologist should be able to define correct whether you have RA or seronegative spondyloarthropathy. Once it's defined that you have spondyloarthropathy then what exactly type of spondyloarthropathy you have may come out as a difficult task. But the pont is that....ah..I just mean that it don't necessary mean to have exactly AS.

Did you read my post at yr previous topic? http://www.healingwell.com/community/default.aspx?f=10&m=736834
If did not, then read it, it might be helpfull for you.

Well, i'm not a doctor, but coming from that you said you don't have positive blood work for AI disease and  you said that you haven't had any swelling or redness of joints, and you have spine involvment, and also correlation with the GI issues...yes it definitely sounds quite that it is seronegative spondyloarthropathy. But which exactly type of seronegative spondyloarthropathy may take years to diagnose correctly and that's why you have to arm with a patience OA is in total conflict with the 'migratory pattern', so if you have migratory aches JUST FORGET about OA, and also OA is extremely uncommon at yr age. OA is an eldery or trauma disease and is caused by the wearing out of the joints or joint traumas. so you can't have wore out joint today on that place and tommorow on other place? You see? It's illogical.

I don't want to confuse you but GI issues, and any type of seronegative spondyloarthropathy very often goes together. It is not necessary to have Crohn's disease if you have GI issues, and it is not necessary to have AS if you have back or neck aches. But one thing is almost certain that you have some type of seronegative spondyloarthropathy and you have to know that yr not the only one having this problem, we are with you and will always help you with advices and support. Spondyloarthropaties are very common problem. Almost 1% of the people in the world have some type of seronegative spondyloarthopathy, some don't realize it, others  not-correctly diagnosed because of very mild symptoms...anyway, it's not something unearthly, it's human.

Yes, everything sounds rational up to here, but there is always smth that engages our mind when we talk about our problem. It is the 'cure'. The problem is that when docs reach to the following conclusion about yr disease they starts to wait for development and stops thinking about the cure, and this is the most d.mned and wrong thing about these type of deseases. And this is so hard for people who are new with this, and gotten used to think that every disease has a cure. Yes I beleive that any disease has a cure, but unfortunately the docs still don't know the cure for all of them. Docs now just wait for development of the symptoms and they treat them according the protocol, then wait for other symtoms and they switch the medicines, tries something else and then again wait for development. They know there is no cure and majority of them are not that much ambitious and/or educated finding a cure (it's normal).

Well, my advice now for you is to keep searching for an innovator doctor until you find it, a doctor who will do all the test which he finds as needed, and who is realy interested at yr condition and these type of diseases (at all). I would recommend you not to try self-treating, because it is extremely dangerous for an uneducated person to buy and drink drugs on it's own, it's almost comparable to a crime. While waiting ...take yr current medications and you may also try some natural ways of healing... but again!!! use with caution!!!  (low dose first) because herbs also keep some even smallest risk. Try some diets, I've heard low-starch diet helps for the spondyloarthropathy sufferers because they modify the intestinal microflora reducing the amount of the bacteria considered as the AS causaitive (but not prooven yet). Read this : http://www.drmirkin.com/joints/J103.htm . Try herbs.... think positively, there is a cure!


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form occasional conjuctivitis outbreaks, mild arthritis, also showing some short lived mild aches all over the body

Post Edited (Marius123) : 3/5/2007 10:19:10 AM (GMT-7)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/6/2007 4:19 AM (GMT -7)   
dear Istone,
 
i must say i am really glad to hear that you FINALLY have an appointment for a doctor soon.
it's been way too long for you to be with all of this worry and no answers at all.
 
start getting very prepared for your appt....write everything down, everything that happpens, all the joint pains, any fevers,swelling, how hard it is to do things (walk, stand, sit, whatever) be very very EXACT and PRECISE and show it all to the physician.
 
you really do need a lot of help because you sound like you are suffering and i know you have been & you've been all of this time with little help an no answers.
 
and should this rheumatologist not know what to do...make him or her refer you to someone who DOES! it's not fair nor humane for a person to go through this again.
 
take care, talk to you soon :-)
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/6/2007 4:23 AM (GMT -7)   
Marius...you are one good guy! That was a great write up you made above...I readit quite a few times...and even learned a thing or 5! LOL
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 3/6/2007 8:37 AM (GMT -7)   

hi

Erin  happy birthday!

thank u for  encourangement,yes finally i have appt on end of March.

hope they will find out what i have cos i suffer for 1 and half year.

here if the tests came negative they rejected the papers they are  so ... dumb.

also i consulted 3 rheum. and they could dx.

now cos i was on infection disease dr they send them referral  to rheum. clinic and now they agreed to have a consultation. my case is indeed very difficult cos i my blood tests are negative  and my arthritis mimics so many: could be AS or ReA or entheropathic who knows.

im still in pain and antiinflammtory meds seem to not help anymore.

all my joints hurt ..neck,spine, hips and ankles.

thank u Erin and Marius for help and  all of u who replayed me. indeed i suffer so much and i find

comfort and help on this forum

kind regards

Iris

 

erin.K said...
dear Istone,
 
i must say i am really glad to hear that you FINALLY have an appointment for a doctor soon.
it's been way too long for you to be with all of this worry and no answers at all.
 
start getting very prepared for your appt....write everything down, everything that happpens, all the joint pains, any fevers,swelling, how hard it is to do things (walk, stand, sit, whatever) be very very EXACT and PRECISE and show it all to the physician.
 
you really do need a lot of help because you sound like you are suffering and i know you have been & you've been all of this time with little help an no answers.
 
and should this rheumatologist not know what to do...make him or her refer you to someone who DOES! it's not fair nor humane for a person to go through this again.
 
take care, talk to you soon :-)
erin
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