What would you do? Increasing joint pain

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Red_34
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Date Joined Apr 2004
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   Posted 5/3/2009 7:13 AM (GMT -7)   
I have Ulcerative Colitis and I get a lot joint pain which is pretty common for someone that has Uc or Chrons (IBD's).  I have OA in my middle finger of my right hand but lately the pointer finger and the knuckle of the left hand have been hurting.  Both of my hands have been swelling, especially in the morning.  My knees are starting to give me grief and it hurts to kneel on them or stand from a low sitting position. I also get a sharp shooting pain in my knees sometimes.  I have one toe on my right food that hurts in the joint and the heels of my feet hurt when I walk sometimes. 
 
The above mentioned only started to happen in the past month.  Before then, I had some random joint pain but it wasn't bad.  My main issues was the pain in my back.  I have had every single test possible to check for the most common forms of arthritis from UC.  I've had blood tests (including the HBLA 27 which was negative), MRI's, X-rays etc.  At the time I knew something wasn't right but nothing was showing up on the tests and it got to the point where I was majorly frustrated and I couldn't help but think the doctors were thinking I was a hypochonriac.  Plus too it didn't help that the rheumy I saw was a major egomaniac.  So now a couple years later, these joint pains are progressing and I just don't know what to do anymore.  I have a HMO and I have to stay within my circle of coverage or I pay out of pocket.  And unfortunately the egomaniac rheumy is the only one within my network. 
 
So what would you do?  Would you suck it up and try to have the docs do some testing again?  Or would you just wait to see if the pains subside.........or heck I don't know!  I am so confused by this whole thing!  On one hand I KNOW something is wrong with my joints but the other hand is afraid to go to the doctors again for testing only for everything to show up as negative again and the doctors looking at me like I'm nuts.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 5/3/2009 7:55 AM (GMT -7)   
without a good rheumy it makes it very hard but I have come accross some doctors who like to go outside there worlds and try to help in more ways if you can find one of these docs you might get relief otherwise it is suck it up and stick to your rheumy. i had to see the head Rheumy for Queensland he was a brilliant Rheumy but one of the most arrigant I have ever had but he did get results and when they exhaust the usual testing then they have to go the extra distance with testng.

I know It is frustrating and I used to think the docs thought i was a hypercondriac too and some did but when you start getting answers it will ease off.

Best of luck and I'll pray a special prayer for you.
Someone started it someone will end it, we must endure till the end


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 5/4/2009 6:35 PM (GMT -7)   
Hi Red, I wouldn't wait, I'd go back to the rheumy. When you get joint pain that is symmetrical it is very indicative of some form of rheumatoid arthritis. When I started my blood work was absolutely negative for everything except ANA. My rheumy said if she couldn't see all the swelling in my joints she'd have said I was totally healthy. She told me that current thinking is to treat hard and fast to stop any permanent damage to the joints. So I'd go back, you don't want to end up with joint damage. Can you try for a second visit to the egomaniac, now you are showing more symptoms, he may be more approachable? He may feel he can see signs of disease that he can treat. Best of luck

mickey138
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 5/5/2009 3:49 AM (GMT -7)   
I'm in a clinical trial of LDN for Crohn's disease. During the trial my arthritis cleared up. When my wife saw this, she started taking LDN and her arthritis cleared up too. :-)

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 5/5/2009 5:30 AM (GMT -7)   
My primary did a blood test a few years ago and my ANA came back positive and she referred to that egomaniac to be on the safe side. But of course he didn't find anything and basically told me that my positive ANA was from my UC and not from arthritis. I think that mainly, because even though I knew something was wrong, nothing showed up on the tests so he just blew me off. What frustrates me is that doctors just don't listen! Like for instance, I have had so many doctors tell what was normal for my Uc (various complaints) and I would have to tell them NO it is not normal. I've had Uc for 17 years and I know my body but they just didn't listen. So I would try to find another doctor and then another until I came to the primary I have now. She is really an awesome doctor and I love her to pieces. She actually listens to ME.

The only thing that has visible swelling are my hands. My kneecaps feel like I have water under them but there is no swelling or redness. The same for my feet. I forgot another symptom I am having is that I get alot of pain sometimes in the ribs of my back. It feels like it radiates from my spine into the ribs. But like every other symptom I have, it comes and goes. It's not consistant, except for my hands. I dunno, maybe I will give in and go see that egomaniac rheumy again. I just so don't want to do it because I was so angry when I left his office. I can see his junior partner there at the office but everything he does, he runs by this egomaniac first.

I've seen the LDN discussed at length on the Uc forum. I don't know what it is to tell the truth but maybe I will look into it.

Thanks everyone!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 5/5/2009 9:29 PM (GMT -7)   
hey Mickey what is LDN? Red, I can hear the frustration. Is there no way you can see another rheumy? Mine is so good even when I have minimal swelling but pain she listens to me and treats accordingly. Its such a relief to be listened to. If your hands are swollen it may be enough to convince egoman, with this disease you need sympathetic ears to moan to!!! Its such a life changer, can be so debilitating at times. Are you stiff in the mornings? That can be another tell tale sign. My blood work finally showed inflammation after about 2 years, so your blood must eventually catch up with the symptoms. But I'm still classed sero-negative arthritis. Ego man must have heard of this form surely?

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 5/6/2009 1:06 AM (GMT -7)   
Hi Sherry

I hope you are feeling much better today. The joint pains are quite common in UC. I too used to have them. Are you taking Calcium and Alpha D. I had also tried Boswellia/Sallaki for joint pains. It was quite helpful. It helped in getting me remission too.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 5/6/2009 5:28 AM (GMT -7)   
Oh my yes! I am majorly stiff in the mornings. I moan my way out of bed. I always feel really bad in the mornings. I mentioned this to my primary and she said that it definately sounded like a form of arthritis. But she didn't quite know what to do for me since all those tests came back inconclusive and the fact that there are so many medications I can't take. Right now I rely on Volatren gel for my hands and Celebrex. Celebrex helps with my night pains because the pains wake me up some nights. The Volarten gel I can only use on occasion because for some reason it affects my Raynauds.

PSA - I know that Uc produces joint pains but this is entirely different then those types of pains. That is how I knew something wasn't right in the first place. A couple years ago I hit remission with my Uc but instead of my joint/back pain getting better, it got worse. That is what sent me to the primary and then eventually that rheumy. I can't take Calcium in larger doses then my multi vitamin or it bothers my Uc. Is the Boswellia/Sallaki a combination form? Can you tell me more about this such as the right dosage, frequency etc?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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bookworm21
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Date Joined Mar 2008
Total Posts : 1766
   Posted 5/7/2009 3:59 AM (GMT -7)   
Sherry, definitely go see another rheumatologist. From what I understand, a positive ANA is NOT associated with UC. I had mine checked back in March for Remicade-induced lupus, and luckily it came back negative. But because of ongoing joint pain and morning stiffness, my PCP is having me see a rheumy.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 5/7/2009 10:13 AM (GMT -7)   
Hi ...

I have what I believe is plain arthritis and scoliosis in my entire back. It's very
painful.

I have an extremely high ANA and a high CPK. One doctor after doing the blood
work (five years ago) said it looked like I had fallen off a truck.

I have IBS (D) not really active right now - but it has been very bad.

They thought I had Lupus but I don't have a butterfly rash so they gave up on
that one.

I haven't thought of that for years until I came here.

Should I be seeing a Rheumatologist or an Arthritis doctor. I used to have one
but we weren't a good match. He was arrogant and AWFUL. (Ever have a doctor
like that)

Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 5/7/2009 6:29 PM (GMT -7)   
Earlier this week I was having awful pain that had started last Tuesday and I thought I would just wait and see and finally went into the doctor on Monday.  Go to the doctor...I hope you feel better very soon.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/7/2009 8:20 PM (GMT -7)   
Red, definately go back and see a rheumy. There is so much that can be done these days, you don't want to end up with permanent damage from lack of treatment. Big hugs, golitho.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 5/8/2009 4:11 AM (GMT -7)   
Okie doke, y'all talked me into it! :) Next week I will go see my primary and try to get into see the rheumy again.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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CMBS
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 5/20/2009 7:51 AM (GMT -7)   
Hi,
Living with chronic pain effects every aspect of your life; physically and emotionally. I have watched my father as well as other relatives suffer with osteoarthritis. My Father used to avoid stairs because the pain in his right knee was so bad, he couldn't squat down and any type of exercise was to painful. My left foot and hand are now showing signs of the decease.  Dad and I have found several ways to help deal with the pain
 
The first thing you need to do is find another doctor who can help you. Having the right doctor who understands what you are going through and will help to find treatments to help with the pain.
 
Glucosamine (1500 mg) with Chondroitin (1200 mg) twice a day has helped me. I also have patellofemoral syndrome (runner's knee) and after about two weeks of taking it I noticed that it helped. The pain was less during normal activities but during exercise my knees still hurt. My Father is bone on bone in his x-rays and he did notice a slight improvement.
 
Exercise and stretching is very important. It is hard to exercise when your are in pain but it does help. When I don't exercise or stretch for a few days I notice a difference. Water aerobics is the best because the water takes the stress off of your joints. My Dad just started to walk and he feels better.
 
I like to run and play disc golf with my husband and the pain in my knees used to prevent my from doing either until recently. Last October I was at a business luncheon and met Alice Brown the Inventor and Founder of In the Groove. In the Groove has a rehabilitative knee orthosis/brace that realigns the upper and lower leg so the patella can track correctly. By realigning the upper and lower leg this helps to eliminate or reduce the pain, increases mobility and most important it helps to rebuild the muscles of the knee. I have tried several other braces and none of them worked like the In the Groove. It is light weight and comfortable to wear. My Father and I are both using the orthosis/brace and our lives have improved. I am running again (over 3 miles) and playing disc golf pain free. My Dad is now going up and down stairs, can squat and has started walking for exercise.
 
 The orthosis/brace was designed based on a physical therapy exercise called the modified Mulligan mobilization with movement glide. It is easy to do on yourself and if it works the orthosis/brace will work for you.

Try to do the Mulligan mobilization with movement glide on yourself. There are two types of the orthosis/brace; an "A" and "B". The movement will let you know if the orthosis/brace works for you and which type you need. Sit down and do the following:

Place one hand about 2-3 inches above your knee on the side.

Place the other hand about 2-3 inches below your knee.

Press both hands toward the center of the knee.

Bend your knee up and down.

Get up and walk around and you should notice a difference. (The best test is to go up and downstairs.)

If this helps then the orthosis brace will work for you. If not try doing the same thing again placing your hands in the opposite positions. If this works then the orthosis/brace is for you.

The best way to make sure you are ordering the correct type is if you right hand is on your thigh during the Mulligan maneuver then you need an "A". If your left hand is on your thigh then you need a "B".

If you would like more information on the orthosis/brace go to the website: http://www,inthegroovebrace.com. The website is very informative and there is a sizing and fitting video.

I hope this information is a help to you. Please let me know if any of the above help and if anything else you come across that does.

 



Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/20/2009 10:33 AM (GMT -7)   
Hey Red,

I saw this post and other than me having Crohns Disease and you UC, your joint pain symptoms sound exactly like mine. I too am in remission, but this joint pain has made me really miserable. I have a Rheumy but she just wants to put me on Enbrel or Humira type meds and of all the things I have heard about them, I worry about getting more joint pain from those meds.

My feet hurt all the time, feels like I am walking on bones instead of the pads. I have the rib/back pain just as you described. My hands hurt all times, and oh gosh how my knees always hurt. And then of course my spine and hips hurt.

I have a very sensitive stomach because of the Crohns and don't do well with most supplements. They just upset my stomach.

I like you know that I should go to the rheumy, but I just don't have it in me to go on those really strong meds. So instead I just treat with my pain meds.

Just wanted to let you know you are not alone.

Gentle Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 5/21/2009 4:41 AM (GMT -7)   
Thanks for letting me know I'm not alone Gail. I think the thing that gets to me the most on some days is that I am only 39 years old but yet when I moan my way out of bed I feel like I'm 90! If I was to ever start on stronger medications, I'm not afraid. I got over that hump when I started on 6mp. NOW that terrified me!

Well I had to put off getting into the doctor for a little bit. My whole family is falling apart it seems! After I made my final post earlier, I had to take my daughter in for swollen lymph nodes. So then I had to take her in to see an ENT (after an ultrasound and antibiotic treatment) which they concluded these swollen lymph nodes were from severe allergies. Then my son got sick with a virus - not good because he has asthma. Then my husband got infected with an eye virus and now my daughter is sick again with a UTI and urinating blood (her doc appt is today). LOL Soooooo when things settle down a bit, I will go in to see about getting back in to see the egomaniac.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 5/21/2009 5:55 PM (GMT -7)   

Oh Red you sound like you are going through a really low patch. Your poor family as well, hope your daughter is ok that sounds really nasty.

I'm constantly in a philosphical state of wondering about acceptance of my pain versus what level of drugs I feel happy taking. Do I go alternative, can I de- stress? Sometimes after all the angst I go through to take some drug I feel extremily annoyed when it doesn't really work to the extent I want it too!!! Inflammation seems to rule my life, the drugs seem to take a heavy toll on my body, so what I'm ranting about is I do really relate to all the angst you're going through on following up your latest symptoms. But having said all that, I really think you should, when you get your family back on track, get yourself back on some sort of rails too! Let us know how you're going, golitho


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 5/26/2009 4:11 AM (GMT -7)   
"Inflammation seems to rule my life"

Couldn't have put it better myself!

I went on vacation this weekend and forgot to pack my pain medications. I ran out of Tylonel Arthritis and I forgot to pack my Celebrex. Can we say OUCH! I was pretty miserable. I told my MIL that I am always on some sort of pain medication and now I know why. If my mind wasn't made up before, it is now! I will definately get in to the docs now and I will make them listen.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 5/26/2009 8:19 PM (GMT -7)   
Hey Red, how are you going? Did you get back to a rheumy?

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 5/27/2009 4:47 AM (GMT -7)   
No, I just got back from vacation and because I have a HMO I need to see my primary doc first. So I am going to make the appt to see my primary but if it's not an emergency I may have to wait a couple weeks.

Today I feel "crunchy" LOL. We have a rain front that came in and everything is just hurting on me especially my hands.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/28/2009 2:16 AM (GMT -7)   
Yeah, isn't rain the pits. It's colder and wet here too so ditto with the joints. I look like I've sprouted golf balls on my knees!!! But its my hips and thumbs getting me down. Knees just save it up for night time!

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 5/29/2009 2:44 PM (GMT -7)   
Red, I couldn't help noticing your postings...have you been able to see your pcp/and or rheummy? I have similar issues (and we're of similar age within a couple of months to a year)

...hmmm, my rheummy stated that the IBD type, though (in his words) "is still extremely painful, does not really show up on x-rays, and does not permanently damage the joint". He also stated that inflammation of the tendons in the joints are also common, as is calcification of these areas (I have some heel spurs and calcification of the Achilles tendon).

He started me on sulfasalazine...not sure if you have had this med...but it took a while to work...and, can you believe it...mornings aren't near as bad as they used to be...now if only I could get the growly in the bowly to stop :P

I wish you the best...hopefully the egomaniac can stop admiring (his?/her?...whatever) genius for awhile and find you something that works... smilewinkgrin
"The earth laughs in flowers"


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 5/29/2009 6:27 PM (GMT -7)   
Becoming undone, I believe what your rheumy is referring to is Peripheral arthritis. This does not cause any damage to the joints and it flares when your IBD flares. I am in remission from my Uc and that is how I knew things weren't right. My Uc was good but my joints began to really HURT! Even back when I saw Dr. Egomaniac. Yeah, I plan on going back to see the doc. It's just a matter of WHEN I can get it. Unfortunatley I am severely allergic to sulfa. I break out in welts and it causes intense abdominal pain.

I will keep the fingers crossed that the growly in the bowly will stop for you also! LOL


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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Post Edited (Red_34) : 5/29/2009 7:33:50 PM (GMT-6)

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