So confused and I have a question(s)

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Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 11/15/2007 6:44 AM (GMT -7)   
Hello everyone  :-)   I normally don't post on here so I hope you don't mind me popping in to ask a few questions?  I'm trying to determine if what I am experiencing sounds like possible arthritis to you.  I tried researching arthritis but it's all so confusing since from what I understand there are over 100 forms of it??  I have Ulcerative Colitis, which is also notorious for causing joint pains, but what I am experiencing is not normal for typical Uc pains.
 
A little history: I have been to the doctors numerous times for hip and spine pain.  I found that I have 3 twisted vertebrae - it sounds like corn popping when I turn certain ways or stand up from bending down because I can literally feel my spine snapping back into position.  I have gone to physical therapy in the past to help strengthen my back muscles and to help ease the pain which only marginally helped.  Next step, according to the doc, was to have epidural shots in my spine to help with the pain.  Anyway, lately (probably for the past month or so) I have been having increased pain in my hip joints closer to my tailbone/spine area.  It hurts sometimes when I walk, stand for long periods (hurts all the time), or turn a certain way (sometimes), do a lot of bending (hurts all the time).  Sometimes in the past, I would get the same feeling when I would start my periods but 10x's worse - it felt like someone was taking hot pokers and jabbing me in my hips! But after a few days on my period, the pain would stop. 
 
My doctor, according to her logic, doesn't believe in doing MRI/CAT scans because to her they are nothing more then a road map for a surgeon.  So I don't know if I have arthritis or not and my doc won't give me a concrete answer.  But if in the event I do have some form of it, is there anything they can even do to help it?  Does arthritis show up on an Xray?
 
Sorry this is long winded but I'm just confused as to what the hip pains could mean.  And truthfully, I'm getting a bit frustrated with my doctor.  She's a great doc but not very helpful when it comes to this.  She just sends me out for physical therapy but won't provide any proof of what I have - thank you for any answers you can provide.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


iMarzz
Regular Member


Date Joined Apr 2006
Total Posts : 103
   Posted 11/15/2007 1:31 PM (GMT -7)   

Try reading up on ankylosing spondylitis - also an autoimmune disorder - affects the lower spine.  See if it sounds like what you're experiencing.  Or perhaps someone here has this type of arthritis and can answer your questions.

Mary


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/15/2007 2:00 PM (GMT -7)   

Hey Sherry.. Welcome to the Arthritis side of the house.. Like Mary said, try checking out this website it is the Spondylitis Association of America website.. pretty good site with lots of info.. here's a little bit from them..

An Overview of Spondylitis
Spondylitis (pronounced spon-d-lie-tiss) is the name given to a group of chronic or long lasting diseases also called Spondyloarthritis (spon-dyl-oh-arthritis) or Spondyloarthropathy (spon-d-low-are-throp-ah-thee). These diseases are forms of inflammatory arthritis that primarily affect the spine, although other joints and organs can become involved. Spondylitis, unlike many other rheumatic (arthritic) conditions, affects young adults and commonly begins before the age of 35. Prominent researchers have stated that AS affects at least 1 in every 200 adults (approximately 0.5%) making it as common as rheumatoid arthritis.

I hope you find something that relates to you there.. if not, I'll be back on later and we can 'chat' then.. :-)
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 11/15/2007 3:49 PM (GMT -7)   
Thanks Mary and Ducky :) I was talking via email with another one of our members (former Mod) and she was explaining AS to me and the symptoms and such. At the time, I was having issues then too and that's when I went to see my doc and she sent me to P/T (I went for 2 months). Then thru out the summer, I hardly noticed the pain. Maybe because I'm more active in the summer I dunno and now that fall is coming - hiding indoors from the colder weather, not as active or whatnot has caused the pain to come back. I've been suspecting AS for a while but not sure if this is the case or if it could possibly be another form of arthritis. I have so many aches and pains that I don't know which end is up anymore!

Ducky, you seem to have your fair share of arthritis. Can you tell me what you feel when yours acts up? Do you have AS? Do you have pain in your hips and lower spine? Does it hurt when you stand for too long? It hurts even when I get out of the shower to do my hair and that is not a long time, so I bend over to try to alleviate the pressure off my back and that's when I usually hear the snaps in my spine line it's trying to realign itself.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/15/2007 5:20 PM (GMT -7)   
Hey Sherry.. I don't have AS, but I do have Spondylitis or Spondyloarthropathy .. Ankylosing Spondylitis is a bit different.. basically it can cause your vetebrae to fuse together.. Sometimes my back hurts so bad, like you, I can't stand for long periods of time.. feels like it wants to snap in 1/2.. and my hips.. my lord my hips.. now, mind you I could lose some weight, but I'm not too big, and it feels like I weigh 500 lbs when my hips act up.. it's so not fun.. Am in a flare now, actually.. I'm fighting a stomach virus.. the weather is changing and I'm a bit stressed with everything going on in my personal life, so I'm sure that has a lot to do with it.. I feel like sometimes if I just sleep, it will get better, but that doesn't help either, but it hurts so bad sometimes, that, that is all I want to do.. :( such a vicious cycle.. My rheumy said that Psoriatic Arthritis and Spondylitis go hand in hand, so I guess I was doomed from the start.. When did you first notice your pain? This year? Or before? like you, as long as I stay active, it's not too bad.. but now that the weather has changed and is cooler, it seems it's back with a vengance..
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 11/15/2007 7:22 PM (GMT -7)   
I honestly don't remember when the pain started. I think it was a gradual thing. But my lower back always seem to hurt me, way back in my teen years. I went to doctor after doctor when I was younger and they all said, "You pulled a muscle in your back. Take it easy for a few days." So I think eventually I just either ignored the pain or thought it was all in my head. I think I must confuse doctors or they just don't think that I can have these sort of things. Because I never look sick, I'm at a healthy weight and I have an upbeat personality so I figure that they must think that I overall look healthy then they think I am so they don't bother looking into things. I've been battling doctors it seems all my life for them to take me seriously. Frustrating for sure!

One of the chief complaints I had about my back, the last time I went to the doctor, was that if I do any repetitive motion such as cleaning the glass shower doors (up and down motion even for a short time), my back starts to get super tight and starts hurting. So then I lie down on the floor and my whole back just spasms like crazy. Oh boy does that hurt! Do you ever get back spasms?
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/15/2007 9:56 PM (GMT -7)   
My rheumy told me that spasms are a very clear sign of spondylitis.. and oh yes, do i get spasms.. Sherry, I think you need to go in and see the rheumy.. :( Try and get it under control now before it gets too bad..
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 11/15/2007 10:43 PM (GMT -7)   
Hey Sherry - if your chief complaint is in your back, please see a rheumy as soon as you can. I always complained about my lower back and hips hurting and was told it was nothing. This went on for 20 years, until I was finally diagnosed with AS. I'm now 2/3rds fused in my sacroiliac joints, my neck and heels are also involved. I just found out I now have a form of spondylosis in my lower back as well. The med's that they have for AS will work for UC as well - Remicade in particular. The longer your doctors don't listen, the longer you will suffer.

The difference between mechanical damage and auto-immune damage (ie AS) as told to me by my rheumy: mechanical damage, you can't move and need to lie down to recover. Auto-immune damage (AS) - the more you move, the better you feel. That's putting it simply and if its possible, it makes sense. My husband has mechanical damage and when he gets a flare, he's flat on his back until it passes. When I'm flaring, staying still makes it so much worse.

You have my email, let me know if I can help in any way - you really need to get to a good rheumy, as soon as possible. You need to rule out AS (in any of the forms) or find out if it is any of the forms of arthritis.

Hang in there...

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 11/16/2007 5:13 AM (GMT -7)   
Starr, the last time I talked to you (don't know if you remember) but I was going to give the physical therapy a try. It did help - I guess just moving the areas seem to make me feel better. Then the summer came and I was very active in the yard, walking, gardening etc. I was almost pain free. But now it's fall and I'm more sedate so yes I do believe it's time to make a visit to the doctor! Thank you soooo much for helping me!

Ducky, yep! I'm gonna call my primary to get her to refer me to a rheumy. I have to be specific of what I want because if I go in there and say that my back or knees hurt, she takes blood tests to rule out RA and sends me to therapy. But now that I know what to specify, I can be more assertive. Thank you very much! :)
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/16/2007 8:24 AM (GMT -7)   
Hey anytime! That's what we're here for! Please let us know what you find out, we'll be thinking of you!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 11/16/2007 9:12 AM (GMT -7)   
Red - I remember our emails quite well - as I was just as concerned then as now. PT can be helpful, but it's not going to take care of the damage that may be occurring. Get thee to a doctor!!!! I'm here anytime (you know how to reach me)...

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 11/16/2007 4:55 PM (GMT -7)   
Sherry,

I am in the exact same situation as you are. My pain has gotten more and more severe. Both Ides and Keah have the same thing and know a great deal about joint/tendon problems that go with IBD.

I am only learning myself, but you can read my posts here:

http://www.healingwell.com/community/default.aspx?f=17&m=969681

http://www.healingwell.com/community/default.aspx?f=17&m=966538&g=967238#m967238

There is alot of info here as well:
http://www.spondylitis.org/about/ibd.aspx

and a very good forum here:
http://bbs.spondylitis.org/cgi-bin/ultimatebb.cgi?YYZ=NAVBOARD

Hope this helps

Pia
Chrons - Aug 06
Hypothyriodism - November 06 
Hypertension - March 07
PCOS - July 07


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 11/17/2007 7:48 PM (GMT -7)   
So cysts in joints can be a sign of AS?? I started on 6mp about a year ago and out of nowhere, I started getting numerous cysts in my finger joints. I had to have several lanced and a few with cortisone shots. I blamed it on the 6mp but my GI said there was no correlation nor any incidences of it ever happening. Then they abruptly stopped forming as quickly as they appeared. I thought it was just a fluke. Coincidence maybe?
 @--->--SHERRY--<---@
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-75mgs), Prilosec, Biotin, Forvia, Pro-Bio, Hydrocortisone enemas**Unable to tolerate Asacol, Rowasa or Canasa** 
~Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)~
~Secondary Reynauds Syndrome - '04 - Norvasc~
~Fibromyalgia - '06~
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
 
 
 
 

 
 

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