Enteropathic Arthritis

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Eyore
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Date Joined Nov 2005
Total Posts : 21
   Posted 11/8/2005 11:10 AM (GMT -6)   
confused  Has anyone else been diagnosed with Enteropathic Arthritis?  If so, can you explain what your symptoms are?  I've been battling Ulcerative Colitis for 15 years now, and I had never heard of this type of arthritis before, but it is supposedly related to the colitis somehow.

Ides
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Date Joined Nov 2003
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   Posted 11/8/2005 3:36 PM (GMT -6)   

Enteropathic arthritis belongs in the family of spondylitis diseases. about 1 out of every 5 people with IBD will develop enteropathic arthritis. I was diagnosed with it a year ago. Then my condition continued to worsen despite treatment. Further testing determined that I have Ankylosing Spondylitis. The Spondylitis Association of America has excellent information about this family of diseases.

To read about enteropathic arthritis, go here: http://www.spondylitis.org/about/ibd.aspx

To read about ankylosing Spondylitis, go here: http://www.spondylitis.org/about/as.aspx


CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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Eyore
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Date Joined Nov 2005
Total Posts : 21
   Posted 11/8/2005 8:02 PM (GMT -6)   
Thanks for the info Ides.  I am familiar with the spondylitis term, but I didn't realize this was related to Enteropathic Arthritis.  Last year I had xrays that indicated possible bilateral spondylosis at L5, but it was never confirmed, and when I tried to push the issue with my doctor, he just dismissed it and told me that was not my problem.  My chronic pain started almost 2 years ago, and the pain level was at a constant 9-10 most of the time.......it was hard to function from day to day.  In the last two months, I feel like I'm finally starting to feel better (up to pain level 5), but it's still there all the time......it never goes away.....and it drives me crazy!!  When this all started out, it was in my lower back/hip radiating down my right leg.  I had numbness, tingling, pins/needles feelings, and weakness along with it.  I had trouble walking, sitting, standing, or just doing anything.  The only thing I did that made it feel better was to just lay down and don't move.  I had all kinds of tests done, and they found nothing but a little bit of arthritis in my SI joint/lumbar spine, but according to the doctors it was not bad enough to cause all the pain I've been having.  Some doctors diagnosed me with an unstable SI joint, but my 'rheumy' refuses to believe this.  I tend to believe the unstable SI joint diagnosis because I always feel immediate relief after a visit to the chiro (which doesn't last long), and if I hold my pelvis in a certain way, and/or contract certain muscles, I feel immediate, albeit temporary, relief.  The numbness, tingling, pins/needles and weakness has subsided, and my main source of constant pain is in the SI joint/hip area now, with periodic lower lumbar pain.  If this pain is in fact coming from EA, will this stuff ever go away and give me a couple hours of relief, or is the pain supposed to be constant and non-forgiving?  I can't take NSAIDs because it flares my UC (as I have found out), and although prescription paid meds were wonderful for about 6 weeks, they started giving me nasty side affects and I had to stop taking them.  I've done all the trigger point injections for my back/SI joint and they only helped a little bit.  Sorry to ramble..........this has been taking over my life for the past 2 years and I feel like I could write a book about it.

Flopsie
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Date Joined Jun 2005
Total Posts : 1361
   Posted 11/8/2005 8:10 PM (GMT -6)   
Hello CLW,
Welcome to the Arthritis Forum,
Venting is never a need for an apology. That is what we are here for, to listen and possibly learn from what others are going through.

Hope you find some relief soon,

flopsie
Don't walk in front of me....I may not follow
Don't walk behind me....I may not lead
Walk beside me..and be my friend...
                                    Albert Carnus
 
and Lord, put your arm around my shoulder and your hand over my mouth
 
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heatmiser
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Date Joined May 2003
Total Posts : 1666
   Posted 11/8/2005 8:46 PM (GMT -6)   

Hi CLW,

I'm trying to learn about this type of arthritis too.  My dr didn't use this term, just said it was arthritis related to cd.  Sounds like you have it much worse than I do.  I get pain in my back, feet, fingers, and have had some in my knees and hips when I pushed exercising too hard.  I'm currently taking darvocet for it, which helps some, but the back pain seems to be the worst during the night.  Lately I've been doing some stretching and I think it may be helping but it's a little too early to tell.  Thanks for the links Ides.


Lynne


Eyore
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 11/9/2005 12:30 PM (GMT -6)   
Hi Lynne,
I also have pains in my shoulders, knees, fingers, feet, etc........sometimes my ear cartilage even hurts when I lay down!.....but these pains come and go throughout the day........they are not constant like the back/SI joint/hip pain I have. I've been doing daily stretching ever since this started almost 2 years ago, as well as some strengthening (as much as I can stand). I've heard this is supposed to help the pain, and it does seem to be helping..........but I really thought I would be much, much better after two years of this..........they told me it takes a long time to heal back pain, but I didn't think I would still be in constant pain after two years.....but I guess I should be glad it is not as intense as it once was. My back pain seems to be the opposite of yours......I feel my best when I lay down at night and take the weight off my joints. Good luck with your stretching! It does help, but hopefully you will get faster results than I'm getting.
Cheryl (CLW)

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6765
   Posted 11/9/2005 4:20 PM (GMT -6)   
Cheryl,
I meant to get back to you yesterday but got tied up with other things. I have some questions, observations, and suggestions to share with you.

First off - Is your Ulcerative Colitis in remission? Or are you currently having a flare? Enteropathic arthritis supposedly flares when the IBD does - meaning that if the UC is quiet, so should the arthritis.

Have you ever been tested for HLA B27?

Have you had a MRI of the SI joints? If so, was there any sign of inflammation? If the MRI was more than 2 years ago and you have seen an increase in the SI pain, why have they not repeated it?

Have you ever had an MRI or ultrasound imaging done of the worse joint?
 
Have you ever had iritis or uveitis?

Now, my story so you can understand why I ask the questions. I was diagnosed with CD a couple years ago but the GI has determined that I have had it for over 25 years. Over the years I had periods of joint troubles that were explained away as tendonitis from over use, strain, sprain, etc. Oddly, I never had an injury before the joint had trouble. about 6 months after I was diagnosed with CD, I suddenly began suffering unbelievably disabling joint pain. I was sent to a rheumatologist who ran a bunch of tests and pronounced that I had EA. Among the tests he ran was for the HLA B27 genetic marker. I was positive. At the same time, my right hip pain was so bad I was sent to an orthopedic surgeon who said that I needed a right hip replacement. Mind you, there was only minimal osteoarthritis in my hip by xray and MRI. I was scheduled for a right hip replacement in 3 months.

I see the GI and hand him the lab results from the rheumy. He sees the positive HLA B27 result and looked at me and said, "You need Remicade." He said this was more than EA. I go on imuran and begin Remicade the beginning of Novemeber. After the 3rd infusion, I got rid of the cane, could bend, squat, walk, lift legs, move shoulders, etc. All things I could not do pre-Remicade. My 3rd infusion was Dec 20th and my hip surgery was scheduled for Jan 10th. I saw the GI and he could not believe the dramatic turnaround. Saw the rheumy and he was the same way. Rheumy tells me I need to cancel hip replacement because obviously that was not my problem.

I continue on the Remicade and Imuran and all was well until May when I suddenly had a flare up in my joints. I could not lift my arms because of the pain in my shoulders and every joint on the right side was so painful the rheumy tells me to use a walker to walk. Rememer how I asked if your UC is flaring? Because this time that my joints flared, my Crohn's was in remission. Enteropathic arthritis does NOT flare unless the IBD is flaring. So the rheumy decides he needs to figure out what is happening with me.

He does ultrasound imaging on the tendons on the right sided joints that were so painful. EVERY tendon was inflamed at the insertion point into the bone. This is called enthesitis. It is one of the hallmark signs of Ankylosing Spondylitis. My enthesitis was os severe that some of my tendons had spontaneously torn. There was evidence of previous bouts of enthesitis because I had calcifications in some of the tendons.

So not only do I have EA, I have AS [Ankylosing Spondylitis]. AS is treated with NSAIDs, Sulfasalazine, immunomodulators, then biologics [Remicade or Enbrel]. Since I am already on Remicade, the decision was made to increase my dosage. I do start to have problems right before my next infusion is due. I am however, so much better than I was a year ago.

My purpose in telling you my story is this - I think they need to investigate whether you have AS. If your current rheumatologist won't, get a second opinion!
Ides
PS. My right SI joint is so loose it pops with every step. I have a lot of pain after walking any distance. My rheumy is investigating this on Friday.
PPS. I strongly encourage you to read all the links on the Ankylosing Spondylitis link I sent.
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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Post Edited (Ides) : 11/9/2005 3:30:15 PM (GMT-7)


Eyore
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 11/9/2005 10:28 PM (GMT -6)   
Hello Ides,
Thanks for sharing!  Wow, you've been through alot........I'm really sorry to hear that, and I truly sympathize.
 
Sorry if this is a long one, but I'll tell you more about my story.......
 
This chronic pain all started in February 2004 with a general feeling of malaise, extreme fatigue, nausea, headaches, trouble concentrating, clumsiness (I'm not usually a klutzy person), some confusion (like all the synapses were not firing correctly.....I felt like a 'Ditz'!.....I would have to think for a moment on just the right word(s) to say, or say/do something really stupid), slight fever, muscle cramps, general muscle aches/pains, eye twitching, a rash (or something....little white bumps) on my eyelid, etc...my UC had been in remission for almost a year before this all started.  Then I noticed that my UC started to flare a little at first, and then kept gradually getting worse as the weeks went by.  I thought maybe it was because I was under so much stress, because just before all this started I came off of an extremely stressful 6 month project at work......working 7 days a week, long hours, holidays, and just tons of stress, so I didn't connect the two.  I ended up with probably next to the worst UC flare I've ever had in 15 years, and by the time June rolled around, I was not doing well at all..........you know the routine.........constant urgency, frequency, blood, pain, bloating, gas, lots of nausea, had more than a few 'accidents' (never did that before!), and the suppositories and enemas on top of the daily maintenance meds were not helping much.
 
I was scheduled for a colonoscopy in July 2004, and about a week before I was to have it done, my UC started to clear up.  By the time I fasted, and went through the purging process for the colonoscopy, my UC was well on it's way to remission (my system must have liked the purging process).......however, I was still in alot of joint (muscle?) pain, and that just kept getting worse and worse.  I would say the worst part of my pain since all this started has been while my UC was in remission, so I guess that doesn't make sense with the EA diagnosis (??).  I was having numbness, weakness, tingling, pins/needles, and burning along with the pain.  I got to the point that I couldnt' figure out if it was actually joint pain, or strictly muscle related, or both.  Part of the pain just felt like someone was pinching me really hard, and just never let go.....and still hasn't quite let go.
 
Anyway, my UC was in what I would consider remission, until August of this year.  I've gotten it to settle down somewhat since then, but I'm still seeing blood at least once a week, and I just feel like it is on the verge of becoming a more major flare most of the time, despite my daily use of the suppositories and periodic enemas....I'm just 'treading water'.  Ironically, since my UC started to flare back in August, I've started to feel a little better as far as the pain.  Don't get me wrong.....I'm still in constant pain, but it's been a little less intense overall.  Of course, I've been trying everything I can to make it better, and then some.  I won't go into that whole list of things right now, cause that might take a while.  I'll save that for another post, if you're interested, but you're probably bored to tears about now!
 
I keep getting flashbacks of having periodic pains like this before, but nothing that lasted more than a couple hours, days, weeks, or months, and it was never this bad. 
 
Now for some of your other questions......I've had so many blood tests, I can't remember if I had an HLA B27 done, but it sounds familiar so I would guess that I have.  Is that the one that shows whether you are predisposed to RA or Lupus?  If it is, I've had that one and nothing showed up. 
 
I've also been through the wringer with other tests.  Because of the pain I was having in my right groin area (as well as my back), and the low fever I was running all the time, they thought I might have appendicitis, so August 2004 they did a CAT scan with contrast.....just showed that the top of my appendix was a little larger than normal, and to keep an eye on it if the pain got worse....nothing conclusive.  I also had xrays of my entire spine.  These showed possible bilateral spondylosis at L5, but it was never confirmed and my doctor dismissed it.  They sent me for an MRI of the Lumbar spine, and nothing obvious there, except a little inflammation/arthritis, some mild to moderate disc bulges, and facet hypertrophy, plus a few other minor things, but nothing conclusive there either.  I was sent to physical therapy, which was not easy in the condition I was in, and it made me feel worse at first......then I started to show some very slight improvement......and then it went back to making me feel worse again, so I'm not so sure it did anything for me.  I've felt a little better since I stopped doing so much exercise, and I just do daily stretching and mild strengthening now.  During the time I was at PT, they also sent me for a myelogram, thinking I had some nerve damage.  Now, that was not a fun test!  Nothing obvious there, either.  I also went to see a neurologist, and they did a nerve/muscle test on me.........I forget what they called it, but nothing showed there either.  The last test I had this year was an MRI specifically of the SI joint in question, ordered by my chiropractor.  It showed some mild inflammatory arthritis, but the doctor was not concerned about it....said they would probably see this in most everyone that had one of these tests done........so, nothing conclusive there either.  I haven't checked out all the websites you gave me yet (which I plan to do tomorrow), but I had done some web research on AS while I was having all these issues before, and I read that if they don't do the MRI or other diagnostic tests a certain way, that AS is hard to confirm.....especially if it's a case where it is not real obvious......and maybe that's what my problem is.......if it is not real apparent, or is a hairline fracture, they can be hard to find if the test isn't done just right, or if they are not specifically looking for that........at least that's what I understood.  But, the one doctor told me this should have showed up on the myelogram if I had a problem with this.......however, they were not doing the test to specifically look for this, so based on what I read I'm not sure I believe him.
 
After knowing all this, do you think I should push the issue of possible AS and ask for another test?  Although I'm feeling a little better after all this time, I am still in constant pain/discomfort and a long way from feeling like I could continue to live like this on a daily basis.  I still have this gut feeling that there is something they haven't diagnosed yet.....something is just not right down there.  I've done way too much to make it better, for it to still be giving me this much trouble.
 
I've never had iritis, or uveitis, that I know of.
 
And I sure wish I could take the NSAIDs right now.........I tried to take them for about a week, and it seemed to be helping just a little bit, but I couldn't continue taking them to confirm that, because they were causing my colitis to get worse.  I haven't taken them for about two months now.  I loved the prescription pain meds for about 6 weeks, but the side affects became much worse than the original problem, so I stopped them too.  Tylenol Arthritis hardly even takes the edge off, if it does anything at all.  I'm basically left with no easy method for relieving pain........dragging the heating pad to work and using it at my desk is a real PIA (and doesn't really help much), and I don't have access to a hot tub, unfortunately. 
 
Let me know how you make out with your SI joint.  I too have alot of pain after walking any distances........can't even walk from my house to the corner without making things worse. 
 
I'm debating getting a second opinion.  After all I've been through since February 2004, I've kinda lost faith in the medical profession.  Not that they didn't order diagnostic tests, but it's the way they have treated me.......when they can't find the cause of my issues, they seem to get frustrated after a while and don't want to deal with me anymore.  They act like I'm crazy, don't listen to me when I try to tell them my whole story, interrupt while I'm talking........the one doctor just got up and walked out while I was trying to ask him questions, that he never answered.  In fact, I tried to ask this same doctor (my rheumy) the same question on two different visits, and he never did answer me.  All I wanted to know was if arthritis of the joint could cause chronic muscle cramps (cause I'm wondering if my pain isn't just coming from the muscles).  Do I have fibromyalgia?  I think I need a fresh face to look at my problems.........what do you think?  Maybe I ask too many questions.  I hope you don't think I'm crazy too.
 
Thanks again for sharing your story with me.......I really appreciate you taking the time to answer me......it meant alot.  I'll be checking out those websites tomorrow.
 
Sorry mine was so long..........and this was the edited version!  I think I'm going to write a book about all this someday.
 
Have a great day!!  Cheryl

Ides
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Date Joined Nov 2003
Total Posts : 6765
   Posted 11/10/2005 1:44 PM (GMT -6)   
Cheryl,
I am so, so sorry that you are suffering like this. I have a couple suggestions.

You wrote, "The last test I had this year was an MRI specifically of the SI joint in question, ordered by my chiropractor. It showed some mild inflammatory arthritis, but the doctor was not concerned about it....said they would probably see this in most everyone that had one of these tests done." An SI joint that shows inflammation is the classic sign of AS. Has your rheumy seen this MRI? Did he concur with the chiropractor? If he did, get yourself a second opinion ASAP! In fact, get a copy of every MRI, xray, blood test and take them to a rheumatologist that specializes in AS. Your rheumy does not have your best interests at heart or he would not be ignoring your complaints or your questions.

HLA B27 does not show if you are predisposed to lupus or RA. It is used in conjunction with other tests to determine AS. I think you would do yourself a big favor if you got a copy of all the reports of your blood, xrays and MRIs. Don't rely on what your doctor said the test showed. Read those reports yourself. If you have questions about what they say, ask on one of these forums. I get a copy of every report of every test I have had. I have them in a folder and I take it anytime I see a new doctor. I have my history available at my finger tips. Not only does it reduce unnecessary testing, the doctor sometimes notices omissions of important tests.

I do not think you are crazy. I think you are a woman in pain that has been undertreated for far too long. Hang in there and get a second opinion!
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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Eyore
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 11/10/2005 2:57 PM (GMT -6)   

Hello Ides,

I think I need to take your advice and find a new 'rheumy' that specializes in AS.  My current 'rheumy' knows about the SI joint inflammation.  I gave him a copy of the report, and he was not interested in seeing the films.  He's actually kind of obnoxious, but I didn't know who else to go to......not many in my area.  He did prescribe an NSAID.....Piroxicam (Feldene), but it made my colitis worse after about a week (increased bleeding), so I stopped taking it, and that's as far as it went........he didn't suggest anything else, except the prescription pain meds I was already taking.....but had to stop taking those too. Is there something that they can prescribe that will help, that won't also irritate my colitis?

I'll check my records tonight for that HLA B27 test and if I don't see it, I'll check with the doctor's offices that I don't have all the blood test copies from yet.  I do have copies of all of my xrays/films, and most of my blood tests, but not all of them.  I also have copies of my medical records from some of the doctors, but not all of them either.  I need to take your advice again and request all of them and take the time to research/review them........that's something I haven't taken alot of time to do yet, but I know I need to. 

I've been researching the SCD diet.......I'm sure you've heard of that.  I've been trying to stay away from certain foods/drinks, but I haven't been totally strict with it.......it's very hard to do!  But, I think I'm gearing up to try this SCD diet and see if it helps my joint/muscle pains, by hopefully calming down my colitis for an extended period.

My back/SI joint is really not good today......not sure what I did to it to make it worse, but I feel like I just took a 6 month relapse.  Have to move really slow, or I get those electrical shock type feelings that feels like my spine is just going to crack in two.  I'm told by the doctors that this is all muscle related.  It feels like it's bone/joint-related to me, but what do I know.

Thanks so much again for listening, and for all your advice!  I need to get all my records organzied, review them, and find myself a new doctor.  I'll let you know how I make out.

Hope you are doing well!  Take care.  Cheryl


Ides
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Date Joined Nov 2003
Total Posts : 6765
   Posted 11/10/2005 3:25 PM (GMT -6)   
Cheryl,
Any rheumatologist who is not interested in the actual MRI films is not a very good doctor in my book! My rheumy always verifies the radiologist's findings by viewing the films himself. He also has repeatedly told me that not all radiologists were created equal. He has found problems the radiologist has missed. My rheumy also feels that MRIs are not good at picking up all tendon problems. He prefers ultrasound imaging of joint tendons as it is a more sensitive test.

As far as medications, if you cannot take NSAIDs or prescription pain meds, then I have no clue. You can't take ANY prescription pain meds? Have you tried Ultracet or Ultram. The generic of Ultram is tramadol. It works pretty good for me most of the time and is non-narcotic. For breakthrough pain, I was given Vicodin which I only need to use if I flare up in the joints.

Get that second opinion! --Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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Eyore
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 11/10/2005 3:51 PM (GMT -6)   
Hello Ides,
I certainly plan on getting that second opinion.......thanks for encouraging me to do that. Would the ultrasound imaging be good for picking up possible ligament problems as well? I was told that would have showed up on the MRI.

The prescription pain med I was taking was Ultram (tramadol). I was never prescribed anything else. I had been taking them daily for about 6 weeks, most times just once a day, but sometimes 2-3 times a day cause I needed it. I had a wedding/reception coming up that I needed to move around and get stuff done for, so they came in handy. I would not have been able to get through it without them, as it hurt too much to move around otherwise. However, I was beginning to have very bad side affects.....nasty headaches like I've never had before, pains in all of my other joints (my ear cartilage even hurt), nausea, insomnia, excess sweating, ringing in my ears, numbness in my arms and side of face, shooting pains in my hands that ran up on the underside of my arms to the armpits, etc.....although, my 'rheumy' said it was unlikely those side affects were coming from the medicine, but if it wasn't that, I don't know what it was from. It started to subside about 4 days after I quit taking the medicine, although I still have some of the other joint pains still.

I suppose I could start using them again, but not on a regular basis like I was. If they give me the same side-affects, I'll ask for a different pain med. Thanks again! Cheryl

Ides
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Date Joined Nov 2003
Total Posts : 6765
   Posted 11/10/2005 5:55 PM (GMT -6)   
Ligaments can be examined by ultrasound imaging. MRIs are good too at diagnosing ligament problems. Do you believe you have a problem with your ligaments. Did you suffer a trauma? The reason I talk about tendons is that enthesitis is one of the problems people with AS encounter. The tendons become inflamed at the insertion points. It is very painful and limits mobility due to the pain and tenderness.

Another question...has anyone evaluated you for myofascial pain syndrome? Here's a link that tell you about it: http://www.medicinenet.com/muscle_pain/article.htm

And my last thought. What are you taking for your UC? What does your GI say about your joint pain? Does he support the enteropathic arthritis diagnosis?
Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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Eyore
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 11/10/2005 7:09 PM (GMT -6)   
Ides,
I did have 3 different incidents that happened over a 6 week period that I thought may have been part of the cause of my problems, but after explaining these 3 things to the doctors, they didn't believe it had anything to do with it.  Plus, it's been so long that I can't remember exactly what day or what incident started everything........it just sort of came on gradually and kept getting worse.  I'm not sure if it was those 3 incidents that weakened everything, and then it just escalated from there, or what. 
 
The doctors told me that if there was any ligament damage I would have been in alot of pain and would have known it right away, and that  it would have surely shown up on the MRI.  I keep thinking, though......what if I just overstretched it?  Would that have shown up on the MRI?  
 
No one has evaluated me for myofascial pain syndrome, but that's a thought.
 
I have been taking Asacol in varying doses, depending on the severity of the disease at the time, but I usually take 3 pills 3x/day, or 4 pills 2x/day.  For the past 3-4 months, I have also been using the Canasa suppositories (almost daily), and Rowasa enemas on occasion.  I have an appointment with my GI in early December to have a serious talk with him about the severity of my disease, and what my prognosis is, because I'm having trouble getting life insurance. My GI does agree with the EA diagnosis.
 
I checked out 'enthesitis' on the web, and I'm wondering if that may be a possibility, because my massage therapist always hits this spot on the right SI joint (where I'm having 90% of my issues) where the bone/muscles/ligaments meet and I just about fly off the table every time, it's so sore and tender. 

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6765
   Posted 11/10/2005 9:32 PM (GMT -6)   
Bottom line, I think you need to be evaluated for ankylosing spondylitis. Do you ever have pain at the back of your heels? Does it ever feel like your Achilles is going to rip? Have you ever had plantar faschitis? Do the bottoms of your feet hurt when you get out of bed first thing in the morning? Do you have pain around your knee joints? Not in the joint but around the kneecap? Same for the shoulders....Any/all of those can be signs of AS. If your tendons are inflaming it can be very painful.

Ligament damage including a "stretched" one would show up on an MRI. I think you are grasping at straws trying to think of possibilities for you pain. You should not have to be the one to diagnosis your condition. You need a doctor willing and interested in helping you. They are the ones that went to medical school and that YOU PAY to help you. If they aren't helping, get a new one. No doctor is going to be as interested in your state of health as you are. You must be your own advocate. If a doctor is not answering your questions, brushing you off, belittling your complaints, FIRE HIM! I replaced my first GI when 6 months after starting the diagnostic procedure he put his arm around my shoulder and said, "You are an enigma. I don't know what is causing your gut problems." I researched and found a GI in my area specializing in IBD. I paid out of my pocket for a consultation. I walked out of that appt with a diagnosis [CD]. The first GI did not understand the results of the tests he ordered. All the pieces were right there in my chart. Please don't give up, fight for your health.

Have you thought about seeing a pain management doctor? They are very good at helping people get a handle on their pain. My rheummy suggested that I go. I am still thinking about it. Right now I am doing pretty good so it doesn't seem as necessary. I must go as I have my long appt tomorrow to examine more tendons. Relief to you soon! ---Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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Eyore
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 11/11/2005 8:15 AM (GMT -6)   
Good luck with your tendon examination today!
 
I've been to a pain management clinic.......actually two of them.  I had 3 injections in my lower back near the spine, and 3 in the SI joint in question......the last one being somewhere back in April of this year.  This helped a little, but it did not make a huge difference.  What seemed to help the most was the numbing medicine they used that lasted for a couple hours after the shot........then I felt worse for a couple days until the cortisone was supposed to kick in........then, sometimes it would make me feel a little better, and sometimes not.  Those couple hours of numbness was really awesome, though!!!  I wish they could just give me shots of that everyday, instead of the cortisone that didn't seem to do a whole lot for me.  However, some people get great relief from doing the pain clinic thing, so I would suggest you try it.......it did help me a little bit, and a little bit is better than nothing!!
 
You're right.......I do need to find a new doctor, and I'm making plans to research that.
 
I do have pains around the kneecaps, mostly on the left, and I do get pains in my shoulders and hands.  I don't really have any consistent pains in the bottom of my feet.........only occasionally.  But, when I get out of bed in the mornings, or the middle of the night, my feet just don't want to work at first......they are real stiff and don't want to bend......I end up hobbling to the bathroom, but it doesn't last too long after I'm up.  I think that's probably just 'getting old' stuff.
 
I'm glad you are willing to talk to me about all this.  It makes me feel better just knowing someone else out there has a clue as to how I feel.........cause It's been my experience that those who have never been through this just are not real interested in listening to you, and don't realize how much this affects our lives......they pass it off with as much concern as someone having a cold that they will eventually get over, or that we are just complainers.
 
I'm anxious to hear how your appointment goes today.  Good luck!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6765
   Posted 11/13/2005 12:36 AM (GMT -6)   
I am beat but don't want to leave this hanging for another day. I wrote about my appt Friday over on the CD forum. Here's a link to my whining! http://www.healingwell.com/community/default.aspx?f=17&m=361759
More later --Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
Please help support this forum.   http://www.healingwell.com/donate/ 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/14/2005 11:21 AM (GMT -6)   
Dear Cheryl & Ides,
 
I just want to say..."What a beautiful, intelligent and educational dialogue the 2 of you shared". :)
 
I learned sooooo much from your conversation on EA and IBD regarding arthritis.  It really read like a case study written in a medical journal! 
 
From reading both of your stories, it makes me wonder about my own case?  Which came first?  The arthritis or the IBD?  I'll be sure to bring it up @ my next appt.  I'm now wondering that if this could be EA, and not full on RA....should my treatment be different (was just Dx with CD this august...but always had bowel trouble since 13, and that's also when the joint pain started...but that WAS ALSO when I had Lymes! So ya get why I am confused? LOL)
 
But your stories and information were outsanding, I read them twice over.  I relate to a lot of it.
 
Thanks so much
Sincerely
ERin  

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6765
   Posted 11/15/2005 6:35 PM (GMT -6)   
Thanks for the kind words, Erin. I have often thought too, whether my arthritis problems began before my Crohn's. In fact I often wonder if my gut lesions weren't in fact from the Ankylosing Spondylitis rahter than CD. It's really mute since the treatment is all the same. My arthritis issues are far more difficult to control and I await the day we find the magic combo.

Update: My left shoulder was injected Friday. By Saturday night I could not believe the improvement. Range of motion greatly improved, less pain. Then Sunday morning I awoke totally amazed. I have not slept throughout the night in months because of the shoulder pain. Everytime I turned over in my sleep, I would awaken from the shoulder pain. Saturday night I slept the entire night without awakening. I felt so rested Sunday morning. What a difference a good sleep can make. Yesterday I noticed that the pain in the biceps tendon has all but disappeared. Love cortisone injections!

Hope all is well with each of you. And Cheryl, how is the search for a new rheumy coming along?
Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
Please help support this forum.   http://www.healingwell.com/donate/ 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/15/2005 6:46 PM (GMT -6)   
Ides,
So very glad to hear of your success with the cort shot! What a relief huh? When hurting for so long, the time that a joint is in "happy mode" is precious. Glad you got some goo rest without the shoulder pain....may it last a long while.
I've realized also that my arthritis is terribly difficult to control. Can't take nsaids or cox2's because I bleed bleed bleed and get days of D! :( Been through Enbrel and now Humira. I do better on a TNF drug...but not great, or even at a consistent functioning level. Prednisone of course works...but who the heck wants to chuck pred all day? LOL.
So, right now I'm doing a every 10 day Humira inj and pred PRN and darvocet/morphine PRN. Next step is Remicade if the joints and pain are not at the level I hope them to be by now.
I hear ya...waiting for the right combo.
I also take pentasa for CD.
I suppose everything would be easier if it were JUST ONE THING ya know? But alas, we are complicated. :)
take good care
erin

Eyore
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 11/15/2005 9:13 PM (GMT -6)   
Hello Ides,
So glad to hear you're getting some relief!! :-)   I was just thinking about that earlier today, and wondering how you were doing. 
 
I have been a wee bit busy, and unfortunately I have not had any time over the last day or so to do any more rheumy research, but it's still in the works. 
 
Been trying to watch the diet, and my UC seems to be getting better week, by week......haven't seen blood in about 10 days now......WOW!
 
I had a relapse with my back/SI joint pain over the last week, and the pain level went back to what it was 6 months ago (level 9-10), but only took the Tramadol for two days.  I got a nasty headache the second day, but luckily my pain subsided somewhat and I didn't have to keep taking them.....it was back to a level 4 by today....yahoo!
 
Erin, I know how you feel about the NSAIDs.........I have the same problem with them......bleed, bleed, bleed!  Although, my current rheumy thinks the connection is all in my head, but what I'd like to tell him is that it's all in my.........well, you get the picture.
 
Take care!!  Cheryl

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/16/2005 9:06 AM (GMT -6)   
I hear ya! Yep, I make everything up! Oh yeah, all in my head...I like spending every cent I have on meds and appts. LOL.
We must be very good actresses if we can bleed on command! hah! Well then, I want my Academy Award!
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