Options for dealing with joint pain

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vitaka
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Date Joined Jun 2006
Total Posts : 887
   Posted 8/22/2009 3:53 PM (GMT -7)   
So I know that a lot of us Crohnie's suffer from joint problems in addition to all the fun digestive issues. How do you know if it is merely joint pain, Crohn's arthritis, or another type of arthritis? Is this something your GI can diagnose or do you need to see a rheumatologist? I know that Crohn's arthritis at least improves as you get the disease under control, but does anyone have suggestions of other, more immediate treatment options? I'm still waiting to get an appointment with a GI and my joints have been getting progressively worse over the last couple weeks as my Crohn's has been getting more active. It's mainly in my hands and feet and luckily has not become debilitating yet, but it is causing me a fair amount of pain (but no swelling).


Also, I doubt anyone has any insight on this, but when I was having significant joint pain in my hands about a year and a half ago, I went to my GI and he told me that it could because of the clinical trial I participated in two years earlier (Adacolumn) and told me to take a daily allergy medicine (which I was already taking sporadically for seasonal allergies). He never suggested it might be solely from the Crohn's, maybe because I was in remission. How weird is that? Allergy medicine to treat joint pain?
29-year-old PhD student, diagnosed with Crohn's ileocolitis in Feb. '06. During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again. Waiting to see GI, back on 4g Pentasa/day.


cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted 8/22/2009 5:35 PM (GMT -7)   
I don't have any answers but would also love to know. I get terrible joint pain and painkillers don't seem to do too much...any suggestions for suitable pain meds?
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.


PV
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Date Joined May 2006
Total Posts : 1177
   Posted 8/22/2009 9:56 PM (GMT -7)   
I know Crohn's patients are not supposed to take NSAIDs, but now they have these topical NSAID creams. I wonder if those are less systemically absorbed then the oral ones . . . has anyone talked to their doctor's about them, or taken them for joint pain? I thought perhaps since the topical creams didn't go through the digestive tract, it may not have the digestive bleeding issues that are a concern with other NSAIDs. Any thoughts?

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


medchrt1
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Date Joined Sep 2005
Total Posts : 517
   Posted 8/22/2009 10:11 PM (GMT -7)   
while it may be called arthritis it is highly likely a result of active crohns. The antihistamine and collection within the joints relationship is therefore not so farfetched and worth understanding.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/22/2009 10:22 PM (GMT -7)   
It is a bit odd that he thought that RA could be a delayed effect of Adacolumn treatment. It was originally used to treat RA. There is a remote connection possible in that the treatment alters the immune profile of the blood, but that is by comparison with pharmaceutical immune modulators which alter the immune response. In the case of the pharmaceuticals, you would have to continue to take/use them to provoke an adverse reaction so long after beginning. Since you had stopped the treatment six months prior, I don't see that it is likely.

I would see a rheumatologist about your joints. The GI does not address joint issues directly and it may not be the Crohn's associated joint pain. My personal choice for joint pain would be to take NAG (N-acetyl glucosamine) which is reported to be effective in healing gut lesions and it is coincidentally useful for arthritic conditions as well. For a short abstract on using NAG for Crohn's, see: Interscience

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 8/22/2009 10:40 PM (GMT -7)   
Chitin, the polymeric form of GlcNAc, is the major structural component of crustacean shells, and is thus the second most plentiful natural polymer after cellulose. Dont take if allergy to shellfish.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/23/2009 6:27 AM (GMT -7)   
Keeper where are you getting the poster said they had RA? They said their Crohns is active and having some increase joint pain, nothing was said about RA. Just wondering about your thought pattern here.

Vitak, more than likely your joint pain is going on because of the flare you are having. I have Osteoarthris related to my Crohns but that developed after years of having the disease. When I am flaring I too will have and increase in my joint pain, and some of it will be relieved once I get the flare under control. My Rheumy wanted to put me on meds like Methotrexate or Humira type meds, but I have a milder case of Crohns and really don't want to use these types of meds yet, and my GI agrees with me. When you see your doctor, maybe might have to be your family doc, but you should ask for some pain meds to help until your flare is controlled. Never know maybe a short dose of Pred will help ease your pain and quiet your flare. I just reread your post and saw you have a wait to see the GI, maybe see your family doc in the meantime to get some relief.

Big hugs,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 8/23/2009 10:35 AM (GMT -7)   
I have Crohn's arthritis, it was a long time ago that I was diagnosed but I THINK they did a bloodtest or something to establish that, and also the flare ups I've had haven't left lasting damage which RA can do but reactive/Crohn's doesn't......something like that I'm sure (have a memory of a doctor when I was really suffering with it going "good news! at least there won't be permanent damage!" little comfort at the time as I'm sure many of you can sympathise with the pain!)
 
PV - I asked my doctors that when I had a flare up in my hands last year and they said that the creams were fine to use as it isn't digested so can't cause bleeding in that area, HOWEVER check that your medications are compatible with it as some NSAID's can react with and change the potency of some medications, I don't think its as much of a risk as orally but worth checking all the same.
 
Must admit that I was naughty and used to take oral NSAIDs for the arthritis but thats just because I was in so much pain I was willing to chance any risk to ease it even a little bit.
 
 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/23/2009 2:12 PM (GMT -7)   
Well, I was just covering all the angles - both Crohn's arthritis and RA. The GI is not likely to be addressing the joint pain directly - their approach is: control the Crohn's symptoms and that will ease the joint pain. While true, it is a slow way to do it. I suggested the NAG because it should help both the Crohn's and any arthritis that is not due to CD as well.

I missed mentioning that the allergy med is probably worth trying. There are two types of joint pain from CD - one is an arthritis and the other is a tendon-ligament inflammation. The arthritis may be helped by allergy medication. A daily dose of vitamin E and C would also help control the allergic vector.

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/23/2009 3:49 PM (GMT -7)   
Hi Vitak,
Sorry to hear about your joint pain.  I don't have any suggestions, but will be very curious to hear what your GI (or a rheumatologist) has to say about this.
 
I too am currently suffering from a recent onset of very painful joint pain in my hands, particularly my thumbs.  I don't think I'm having a Crohn's flare as I just had a small bowel resection about 3 weeks ago!  What's really weird, though, is that I remember having this similarly painful joint pain in my thumbs before, about 2 years PRIOR to having Crohn's!?
 
It will be interesting to see if the joint pain lessens once I'm back on Humira on 8/30.
 
I've been taking an RX called Darvocet (NOT an NSAID) for the pain, and it helps.  This is a narcotic pain reliever, so I wouldn't want to use this ongoing.
 
Take care, and please let us know what you find out.  Sorry I couldn't be of more help to you.
54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs.   My first small bowel surgery was on 7-30-09.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/23/2009 7:47 PM (GMT -7)   
walking or exercise bike for a little while each day to stretch out the joints...and taking Aleve...hot showers...warming up the joints with blankets..that cream stuff that smells like menthol..even vicks in the jar helps joints too..using oven mitts to open jars..try not to buy difficult things to open..like the jars that state you can just peel them open..we all know it never works..don't let yourself get too cold..protect yourself from the cold..if you take Pentasa and you forget to take some pills for a few days..that will give you joint pain..if the pain is so crippling..that you can't bend your fingers..then..its arthritis..hope i helped..

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/23/2009 7:49 PM (GMT -7)   
continued..wear gloves outside when its rainy or cold..and wear socks even indoors..and you might notice a difference..even if the joints in the hands hurt...put some bengay and then put on gloves while you watch tv..and i bet the pain will get better...at least a tiny bit

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/23/2009 7:56 PM (GMT -7)   
Thanks for all the feedback/suggestions! I think I'm going to ask for a referral for a rheumy as well, although all I want at the moment is an appointment with a GI! Grr... this never happened when I had a real job/not university insurance.

Assuming my intestines are behaving tomorrow, I'm going to try going back to my gym and doing a light workout. I've been super fatigued lately too, so I'm hoping it will help with that as well.

Frogeleita, your advice on buying things not difficult to open is well heeded: since my abdominal pain was minimal today for the first time in three days, I decided to make homemade pasta, not even thinking it would be an issue until I started kneading the dough. Oh boy did that hurt. I'm definitely still getting used to the new symptoms this time around. I'm hesitant, however, to take Aleve, and think I'll rely on Tylenol until I get in to see a GI or rheumy.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again. Waiting to see GI.
Current meds: 4g Pentasa, 150mg Trazadone, Ativan as needed


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/24/2009 6:32 AM (GMT -7)   
Vitak,

I think you should avoid the Aleve too. Especially if you are flaring. Ibruprofen and Aleve type meds are no-no's for us Crohnies, and I think with you flaring right now its even more important to avoid it. Good luck!

Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

homeschoolmom
Regular Member


Date Joined Feb 2008
Total Posts : 31
   Posted 8/24/2009 7:07 AM (GMT -7)   
This is interesting to me, I have had colitis/crohn's for longer than I'd like to remember. In the last year I have developed increasing pain in my knees, elbows, hands, feet and back. Some days I can barely handle it. I did not realize that this could be related to the Crohn's. I am not flaring right now, but am still in the bathroom at least 10 times a day. Dr's can't figure out why, also can't figure out why I hurt like heck all the time. Anyone have any ideas?
Diagnosed 1972 with UC (12 years old); many flares over the years
1994 had my son and became very ill; took 4 years to get the correct diagnosis.
 
PCP diagnosed with IBS and was down 70lbs. by the time I insisted on seeing a specialist.
 
1997 Diagnosed  with Fistulizing Crohn's
 
1998 had 1ft. of small intestine removed including terminal illieum, have had constant diarrhea since.
 
Currently taking imuran, prilosec, synthroid, zoloft, xanax & B12


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/24/2009 9:26 AM (GMT -7)   
I have had a lot of joint pain over the years, currently not too bad, knock on wood. But my Rhuemy can't give me any of the traditional arthritis type drugs because I have bad reactions to them and my CD isn't active enough to get my GIs to put me on any of the biologics even though my Rhuemy thought those would be really helpful for my joints. So he had me try acupuncture. I was really skeptical, but it did help a lot. Not 100% better but maybe 70%. And you do need to give it a few sessions. Try to find a 'community acupuncture clinic'. You can do a web search for one, they are a ton cheaper, unless your insurance will pay for it. I ended up paying $15 a session, which is about what my co-pays are for doctor visits, so I thought it was a worthwhile investment for the benefit I got.

If you can get those electric mitts and footies that they have at beauty supply places (or Walmart sometimes)those work nice cause they are easy. Basically you want to put heat on, but also try to make it moist, so warm a wet towel in the microwave then wrap it around your hands or feet then wrap up in another towel, just make sure not to burn yourself. You can use rice (uncooked) in a long tube sock (pour in a lot, then tie the end closed), and microwave that to make moist heat. This can be used over and over again. People sell variations of this at mall carts but with essential oils in them of a lot of money, but rice is cheap, and clean socks are in everyone's drawers.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/24/2009 9:50 AM (GMT -7)   

My "Crohn's related arthritis" has been flaring since January, even though my Crohn's is supposedly in remission.  Humira is not helping with the joint pain, Ultracets aren't doing enough, and we've ruled out just about every other option.  My stomach doesn't like the NSAIDS, my liver doesn't like anything else, including the methotrexate injections, which WERE helping but I had to stop (am trying them again now at a reduced dosage but they are not working at this dosage). 

Volataren gel seems to help with specific joints, but I can't put it all over my whole body, so it's not helping much right now.  But, that is something for some of you to try.  It normally helps me and it doesn't have side effects like the pills do. 

Definitely see a rheumy.  My GI won't touch the arthritis, so I have to see her for that.  They normally work pretty well together, but she recently wanted to take me off of Humira and put me on Enbrel, but my GI said no, since that won't help the Crohn's any.  So, it has been very tough trying to treat the arthritis without aggravating the Crohn's. 


Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/24/2009 10:53 AM (GMT -7)   
I am glad to help in anyway..i know from having my own joint pain..from Lupus..just what its like...and i can never open the baby food jars for my son..its hurts! Take care of yourself and let us know how you are feeling!
ps..when i want to see a specialist.i just make an app and call for a referral..you might be able to do that as well and sort of speed things up!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/24/2009 11:07 AM (GMT -7)   
It's interesting that you would post this now.  Over the past several months I've noticed increasing joint pain in my hand.  At first I just thought it was due to me straining it or something but it has not gone away and is becoming more and more noticeable.  I just assumed it was one of the side effects of crohns disease.  If you find a good solution to help with the pain, I'd be happy to hear about it.  I am forbidden from taking any over the counter anti-inflamatory meds due to the crohns in my stomach and the ulcers from previous use of anti-inflamatorys. 

Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Vancocin HCI 125mg, 4xday for C-Diff, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl & Entocort


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 8/24/2009 1:14 PM (GMT -7)   
OK all of you suffering from joint pain in some form or another what is your sugar intake? Watch it in your diet and I'm sure you'll see an improvement in your joints. If I so much as have a small glass full of orange juice I'm in agony the following day, I don't take refined sugar in my drinks I stick mainly to water and 1 coffee a day. If I have a small piece of cake or muffin my joints react badly the next day, sugar for me is the enemy.
just a thought for others suffering.
GK

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 8/25/2009 7:44 PM (GMT -7)   
Hi,

I have been seeing an acupuncturist since May. I went to her b/c I was having a flare that involved very painful stiffness, swelling and arthritis in my ankles, knee, jaw and right pinky. My GI wanted to put me on Remicade or Imuran. I wanted to hold off on these medications as long as possible. Boy am I glad that I went to her. I have since been managing with weekly acu and a variety of herbs and supplements including the Chinese herb Isatis Cooling (for intestinal inflammation), Vitamins D and E, fish oil, Align probiotic, a vegetarian glucosamine (LOVE THIS!), resveratrol (antioxidant) and a couple other supplements. Perhaps most intriguing is that my acu ordered a comprehensive stool analysis which revealed that I had no detectable growth of the good bacteria lactobacillus. Healthy guts have billions of these bacteria. We have now moved to correct that, too. I am SO glad that I went to her!!

As for the pain, when my arthritis was really severe and limiting my mobility, my GI wrote me a prescription for Mobic. It is a Rx NSAID that several of his Crohn's patients have taken successfully - even long term. I used it for about a month straight - once a day - with very good results and no side effects. It is taken with food. I use it now only very occasionally when the pain gets away from me - which, thanks to acupuncture and my herbal regimen, is rare. Perhaps this is something you could mention to your GI. I had not taken an NSAID since my diagnosis 4 years ago and forgotten how wonderful they are. Mobic apparently has some different mode of action that my GI thought would be useful without causing too much disruption otherwise. I am very glad that I found it! Hope this helps.

vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/27/2009 4:55 PM (GMT -7)   
So a quick update:

I was originally planning on going to my GI and talking to him/her about my joint pain before scheduling an appointment with a rheumy. However, I still do not have an appointment with a GI here because my referral is taking FOREVER (not the fault of the university but rather the GI office). The problem is that my joint pain has gotten significantly worse and now includes my hands, fingers and wrists pretty much constantly (dull, achy pain), and well as my elbows, knees, ankles and feet (sharper pain but not nearly as often). I left campus early today because the pain was getting to the point where I could no longer mask it. I'm going to call the campus health center tomorrow (for the fourth time this week) to see if we can get my GI appointment worked out, but I'm also going to bring up the joint issues. My concern is that if I get a rheumy appointment first, they will want to know what's going on with my Crohn's before they make any assessments. I think I will also ask my PCP for some pain meds, which I was hoping to avoid before seeing a GI or rheumy, because the pain is making it painful to type, open things, etc. Pretty much anything that involves my hands moving.

Unfortunately, moderate exercise has not helped so far, and has actually caused more pain. I tried moist heat today on my hands, but that really hasn't helped. In fact, after having a heating pad on my right hand for about 20 minutes, two of my finger joints now pop every time I lift my fingers. How weird is that?

Hopefully this referral nightmare will be worked out soon. I don't think I've ever been looking forward to having a colonoscopy, but I'm really hoping that they will schedule one after my first appointment so I can get this DD under control!
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again. Waiting to see GI.
Current meds: 4g Pentasa, 150mg Trazadone, Ativan as needed


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/27/2009 9:44 PM (GMT -7)   
Take your allergy meds. Vitamin E and C also might help. Vitamin E is reported to help asthmatics and if the allergy vector is the cause of your joint pain (the other would be a different immune system vector), controlling allergic responses should help.

vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/28/2009 6:03 AM (GMT -7)   
Hi Keeper,

I do take allergy meds daily (sorry if I wasn't clear about that). I also take a daily vitamin, but maybe I'll try upping my vits E & C intake.

In happier news, I finally got a GI appointment. In not-as-happy news, it's not until next Thursday. Sigh.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again. Waiting to see GI.
Current meds: 4g Pentasa, 150mg Trazadone, Ativan as needed


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/28/2009 7:08 AM (GMT -7)   
So I got talked with my doctor (PCP) regarding the joint pain and he said I should just take Advil/Aleve and that the risk of bleeding is no higher for me than anyone else. He said he can't think of what else to prescribe me and didn't want to give me narcotics because they would mess up my bowels anyway. He also said I should just wait until I see a gastro before I make any appointments with a rheumy.

I trust him as a doctor, but I've had it beaten into my head that NSAIDs are bad, so I'm not sure what to do. I do not have bloody BMs and have no history of bleeding, and I don't know if I can go the next week without any treatment, so I might just have to take some Advil or Aleve. Grr.....
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again. Waiting to see GI.
Current meds: 4g Pentasa, 150mg Trazadone, Ativan as needed

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