Once it's there, it's the pain that NEVER goes away! Anyone else suffer this?
Also, does anyone else have the feeling 24/7 of wearing boots from toes to knees?
Very uncomfortable. Doc said it was from the SJ.
Yep - I have the joint pain and heavy leg feeling, too. That’s one of the first signs for me that I’m heading for a flareup. Not to beat a dead horse (geez - what a weird saying) but going gluten free has helped that tremendously. When I cheat, that’s the first symptom I get - terrible joint pain. If I’m careful to avoid gluten, not only do I have fewer SS symptoms overall, my joints are much, much better!
MissMaggie
Since I have PsA and SJ I am very familiar with joint, tendon and muscle pain all the time. I have been on Humera for a year and I have improved significantly. Of course I have bad days, I also have a herniated disk. My MRIs have shown every disk in body has damage from PsA. I relish the good days and pray through the remainder. Hang in there and find ways to side track your mind. I play word search puzzle and read constantly after working 8 hours and babysitting my 4 yr old grandson and 6 month old granddaughter 3 nights each week. We all have pain and burdens that push us to our limits but you must endure all things.
Hi Maggie!
So glad to hear that this works for you! I went gluten free for about a year, and there was absolutely no difference! I also eliminated dairy for a period as suggested by my Chiropractor, as he assured me that a food sensitivity or allergy could be a trigger, but there really wasn't a difference there either.
Thanks for responding, I'm glad that this was so easily determined for you! There are some days I would be willing to go without eating to get some relief!
Wishing you continued success,
SK
Hi Nana,
Sorry to hear of the herniated disc, that has to be excruciating! I have DDD, and many of mine are collapsed on one side or the other from the head all the way down, but of all of it, the SI joints take the prize for the worst pain. I have the Spondylitis type of PsA, and it sounds like you do too, which is the one that primarily goes after the spine.
Sometimes the Daypro helps the most, sometimes the Ethyl Chloride spray is the answer, and unfortunately sometimes it takes the Morphine. There are times when I just have to ride it out! Riding in the car, and barometric pressure has to be the worst of this.
I was on Enbrel for about 2 years, and it did help, however the recurring infections have made it impossible for me to take any biologics, so they are off the table for me. If I clear the eye specialist, my Rheum wants to try Plaquenil.
Yes, my grand kids are a big part of my life too! Nothing better than being a grandmother!
Thanks for responding! Hope you continue to have good results from the Humira! I've heard good things about it!
Wishing you well,
SK
I have had pain in my SI joints forever, and never connected it with the Sjogrens. It does make sense, since it can affect the joints. I already suffer from the random, moving joint pain. I have yet to find a good rheumatologist, tho, so my life mostly just consists of suffering.
Yes, some days are better than others; once I keep moving (warm up) I exercise, yoga and walking being the best.
Miss Maggie,
Is on the money; I find that the pain announces a big flare-up and it's because I've "cheated" by having something with gluten. Staying gluten free is probably the best thing you stop the pain from setting in and krill oil. I take Premium Krill Blend and it really helps!
Oh, I'm in on the Omegas, for sure! I would gladly give up the gluten again IF it would have made a difference, but it just did not! Now I have really backed off the night shades, and that seems to have made a noticeable difference. I also used cold expeller pressed organic cooking oil, that is a noticeable difference too!
SK,
Ditto to staying away from nightshades, helps tremendously! Since I figured out that tomatoes were wreaking havoc on my system (who knew all those "healthy salads" were dragging me down and pasta with tomato sauce, plenty of garlic; can we talk?!) I removed them (along with garlic :-( ) from my life and that made a real difference! What do we call this? Listening to our bodies! Who knew?
Now I don't have nearly as much trouble with cooked tomatoes like sauce, but I still go easy on it! I still eat some spaghetti or baked ziti once in a while, but ever since I was a kid, to get near a tomato plant, I looked like I had been scalded, and eating raw tomatoes, same thing!
Garlic bothers you? Of course onions,peppers,oranges, and apples bother me! I love hot spicy food, but it doesn't like me!
BTW - cooking with Coconut oil is excellent, if you are not allergic.
SK said:
Oh, I'm in on the Omegas, for sure! I would gladly give up the gluten again IF it would have made a difference, but it just did not! Now I have really backed off the night shades, and that seems to have made a noticeable difference. I also used cold expeller pressed organic cooking oil, that is a noticeable difference too!
I have never cooked with it, but I use it on my dry body, on the Psoriasis on the grand kids! Is it a high heat oil?
Here's what I use, good source of the Omegas too!
Yes, it is high heat oil. Thanks!
SK said:
I have never cooked with it, but I use it on my dry body, on the Psoriasis on the grand kids! Is it a high heat oil?
Here's what I use, good source of the Omegas too!
http://www.vitacost.com/spectrum-organic-canola-oil?csrc=SDC-022506...
Yes, I do! Just posted on the thread about tendonitis but this area is my biggest issue. And you're right...it NEVER goes away. I get Active Release Treatment (ART) from my chiropractor and it's the only thing I've ever found that keeps me loose and able to function.
Janet
See, I'm in the Boonies and have to drive 30 -45 minutes to get to my DC, and that just kills me, so by the time I get home, I feel like I never went! But my DC has been the one who has kept me on my feet! Love the man!
I love my guy too! Plus he is REALLY good looking which doesn't hurt!
Oh yes, mine too, young, strong, kind, and handsome!!!!!!!!!! Flutter, flutter! No, I'm not dead yet!