What Helps Your Pain?

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run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/10/2009 7:43 PM (GMT -7)   
Hello!  My two year old little boy was diagnosed in March with systemic onset JRA.  Up until recently, it seemed the only time he had pain was when his fever/rash was flared up.  As long as we were keeping that under control, he seemed to be doing pretty well.  The last couple of weeks his knees became very swollen.  The pedi rheum we see sent him for an ultrasound (which we got today) and there is fluid on both knees with a significant amount on the left knee.  His left knee in particular is so huge I don't know how it can't hurt him--but he doesn't complain.  I do notice him favoring it though, so I know it has to hurt at least a little.  I think maybe between being too young to communicate about it and being used to the pain he just toughs it out. 
 
So my question is:  what kind of things help you when you are having joint pain?  I was considering trying a bit of heating pad on his legs to help give him some relief and I can find stuff online that indicates that might help.  He does seem to feel better after a bath and will sometimes ask for a bath at times he doesn't normally take one (like during the day) so I think warm water helps. Anyone find relief from a heating pad?  Does cold also help you or make you uncomfortable? I appreciate any feedback I can get while I'm waiting to hear from the pedi rheum what our next steps will be. 
 
I also wanted to add that I have ulcerative colitis (diagnosed two and a half years ago) so I can relate to what he is going through with chronic illness.  I think that is why I am so determined to help him as much as I can.  I went through a lot of pain and suffering trying to get my disease under control (still do from time to time with flares and such) and I want better for him.  Thanks for reading and for any advice you might have. 
UC dx 2/08
Former treatment:
Asacol (2 pills 3xday)
Rowasa nightly x 6 weeks
Current treatment:
Lialda (4 pills 1xday)
Prednisone started 6/19 (2 wks at 40, 1 wk at 30, 1 wk at 20, 1 wk at 10)
Rowasa nightly
Specific Carb Diet


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 8/11/2009 1:29 AM (GMT -7)   
My heart goes out to your poor little guy, and to you. I was diagnosed with RA in April 2009, with a great deal of pain in my hands upon awakening. They were swollen and tender, and what helped me most at that time were ice packs. I used them for several weeks as soon as I woke up, until my rheumatologist told me I could try heat. It's funny, both heat and ice now help the pain, but at the beginning only ice helped. It seems that heat could make swelling worse, but I'm only guessing at that. I wish I had more information for you, but that's what worked for me. Hopefully someone with JRA experience can give you advice, but this is my best advice. Good luck!
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/11/2009 6:19 AM (GMT -7)   
Thank you, ladywriter.  I was noticing your signature area and I want to congratulate you on your sobriety.  Not an easy task at all.

UC dx 2/08
Former treatment:
Asacol (2 pills 3xday)
Rowasa nightly x 6 weeks
Current treatment:
Lialda (4 pills 1xday)
Prednisone started 6/19 (2 wks at 40, 1 wk at 30, 1 wk at 20, 1 wk at 10)
Rowasa nightly
Specific Carb Diet


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 8/11/2009 7:02 AM (GMT -7)   

I'm sorry to hear about your little guy, so young to have arthritis. I'm not sure how they treat a child his age, but when I'm in a serious flare steroids are about the only thing that will help. I also find heat very helpful in the form of heating pads, hot baths and the hot tub. Cold doesn't work for me and during the winter months, the colder it gets, the more painful my joints become.

I hope someone that also has a child with RA may have some helpful advice for you, sorry I couldn't be of more help.


mamarama
New Member


Date Joined Aug 2009
Total Posts : 11
   Posted 8/11/2009 7:57 AM (GMT -7)   
Heat helps me the best.  And wet heat is the very best as it 'soaks' into the sore joints fastest.  I don't know how feasible it would be for you, but, there are 'moist' heat heating appliances and I also LOVE my hot wax for my hands and feet.  Back before Enbrel & now Cimzia, some days I couldn't even get dressed until I'd soaked my hands in a sink full of hot water for several minutes each morning.
 
And a friend's daughter with JRA uses a hot wax machine each morning on both her hands and feet so she can get dressed for school.
 
Just be certain you supervise and watch for burns - with little ones, you have to monitor the heat closely; not too much or for too long.
"If you're already on thin ice, you might as well dance"
 
RA, IBD, Sjogren's & Fibro


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/11/2009 8:11 PM (GMT -7)   
It breaks my heart to think someone so young should have to suffer this way.
What a brave little boy he is!
I agree with heat being better than cold for relief - I love my heatpad.
Im so sorry he and your family are dealing with this.
Please keep us posted on how he is going.
Jo

Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/11/2009 10:39 PM (GMT -7)   
I had Juv inflammatory arthritis in my teenage years - knees wold swell up so bad that i coudnt walk for 3 weeks out of the month, and nothing i tried would stop it. the only thing i was able to do to reclaim the use of my knees was to have them drained whenever they filled up to bad. you would get releif for a while and be able to use your leg again, but alot of the time the synovial fluid would just pump itself right back in there.

Swapping hot and cold packs every 5 minutes helped alot as well.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/30/2009 10:55 AM (GMT -7)   
Quick update on my little guy:
 
He's been getting comfort from the heating pad and some warm baths.  We started Kineret this past Thursday so we've given him three injections so far.  It actually seems to be helping already...whether it's actually doing something or just because we told him it would help I don't know.  I gave him an ice pack after the second injection and he took it off of his thigh and put it on his knees and seemed to like that, too.  Now he'll ask me for one or the other and I just let him decide which one and how often/how long (as long as it's not staying on too long).  So I guess the answer is heat and cold both work for him at different times. 
 
I hope the Kineret works for him and gets him to remission.  Right before we started his knees got so bad he refused to walk at all.  He still has moments of that, but it's improving a little at a time. 
UC dx 2/08
Former treatment:
Asacol (2 pills 3xday)
Rowasa nightly x 6 weeks
Current treatment:
Lialda (4 pills 1xday)
Prednisone started 6/19 (2 wks at 40, 1 wk at 30, 1 wk at 20, 1 wk at 10)
Rowasa nightly
Specific Carb Diet


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 8/30/2009 3:04 PM (GMT -7)   
Hi Cakes,
    Sorry to hear about your little guy. I don't know if this will help or not. My nephew was diagnosed with JRA
at the age of 2. My sister and I were out yard saleing and he collapsed on us and couldn't walk. They did
all sorts of blood tests and found the JRA. The Drs put him on 18 baby asprin a day and it was 6 months
before he could walk again. He was in remission for years. He is now 32ish and aches some but maybe that
did the trick. Now drs. are so drug happy that something that simple might work. Both my boys (now 30 and 35)
have some forms of arthritis. I was 7 when I came down with it (I'm 55) and so was my dad. My grandaughter
has had some minor discomfort from it since she was 9 and she's now 13. Her joints are now cracking and
popping.  It seems to be a very heridity type of disease. Both of us get relief from hot showers.
   Good Luck
                 Nana Monster

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/31/2009 8:27 PM (GMT -7)   
Glad the heat has eased his pain somewhat. Hopefully the new med will put him in a long remission.
Please keep updating.
Jo

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/1/2009 9:03 AM (GMT -7)   
I'm sorry to hear your little one suffers so much. I started having issues around 6 or 7 but wasn't diagnosed until I was 11. i hope the medication does kick in and help him.

I'm glad the hot showers help...heat does help me quite a bit, though when the swelling is severe, I will often alternate the hot/cold on an elevated leg like someone else mentioned.

I know he is young, but other things I've learned over the years that help keep the intensity down is good rest, stretching, and avoiding foods I'm sensitive to. Of course, when you're in severe pain, sleeping/resting and moving are pretty much impossible and then you're stuck in a vicious circle. I've found certain foods do make life worse for me. Some I know I have either an allergy or sensitivity to and others just seem to make me stiff and achy the next day.
 


run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/17/2010 12:04 PM (GMT -7)   
I know it's been a little while, but I wanted to give an update on my son. We are still doing the Kineret injections, and just finishing a course of steroids. He's actually had great labs for six months now and seems incredibly healthy. His SED rate has been coming back at just 1 or 2 each month which is really exciting. Also, his iron levels are finally normal and we were able to discontinue the liquid iron supplement he was on for quite awhile. Current meds are: Naproxen 5ml 2 x day, liquid steroid 1/2 ml 1 x day, Kineret injection, .20 ml 1 x day, and vitamins. He's living as normal a life as possible at the moment and seems to be very happy and active. :-)
UC dx 2/08
Former treatment:
Asacol (2 pills 3xday)
Rowasa nightly x 6 weeks
Prednisone: 5 weeks spring 2009, 8 weeks summer 2009
Current treatment:
Lialda (4 pills 1xday)
B-12 Supplement
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 5/17/2010 2:54 PM (GMT -7)   
Im so happy to hear this - I hope he stays this way for a very long time.
Thanks for posting your update.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2323
   Posted 5/17/2010 4:25 PM (GMT -7)   
I was happy to get to the bottom of these posts and see your good news too! My heart was breaking for him when I read your original post. May his improved health stay with him for a long, long time!

Abol76
Regular Member


Date Joined Mar 2010
Total Posts : 74
   Posted 5/17/2010 4:40 PM (GMT -7)   
Hi Only just read this thread. My heart was breaking at the begining but I was so glad to read on and read of your little mans progress. It might not be relevant now but I find a tense machini very good for pain but am unsure If you can use them on one so young. You go well and I hope your sons progress continues. XXX
Arthritis, GORD, IBS, PCOS, Neurosarcoid, Hypothyroidism, psoriasis, mental health issues, BIH, high blood pressure and high cholesterol. . . Methotrexate injections, folic acid, Prednisolone, Alendronic Acid, Adcal D3, Morphine, Lansoprazole, Domperidone, Norethisterone, Metformin, Levothyroxine, Amitriptyline, Sertraline/lustral/Zoloft, buspirone/buspar, Carbamazapine/Tegratol, Risperidone/Risperdal, Melatonin, Lisinopril, Atorvastatin ". . . but hey, Tomorrow is another day!" :-)


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/18/2010 9:49 AM (GMT -7)   
wonderful news! thank you for the update!
 

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