After 14 years of undiagnosed pain, about 4 months ago I was diagnosed with rheumatoid arthritis. My anti-ccp levels were a massive 1,640 which is a strong indicator of RA, apparently even though I have no visible damage and a negative RA factor.
I've often wondered though, if there is something more to my diagnosis. Everyone talks about "flares", though my pain is constant and never ending. Sure, if I remain sedentary for long periods or exercise hard, the pain increases, but for the most part, the pain is always bad and always constant. There aren't good times.
Can this be an indicator that I have something more than RA? I've been tested for lyme (though from my reading I need to take a more conclusive test like the Igenix). I've been tested for lupus.
Before I go on Methotrexate and suppress my immune system, I'm first trying to heal it through LDN, diet, turmeric paste, CBD oil, and borax. Nothing is helping though. Even prednisone didn't help me. Which makes me wonder if maybe I have a bacterial infection caused by a dental procedure (root canal, dental post). Bacterial infections can cause auto-immune problems. Maybe thats why nothing is working for me.
Anyone else with RA experience constant pain? Could a bacterial infection be the culprit considering nothing is working for me yet? Are my 14 years of chronic pain (started with back, then neck, now knees and ankles) symptomatic of RA, and if so, shouldn't I have permanent visible damage by now?
I know it's still early with the LDN, diet... so maybe I just have to wait longer. I just want to make sure I'm not ignoring something else (like possible infection). Funds are limited so I have to be wise with my medical decisions. Thank you.
Hi
I'm sorry to hear about your pain- that's really tough. I don't know how helpful it is but I have AS and peripheral arthritis and have to say, my pain too, is constant. Like you, u don't have what I'd consider good days- just less bad days? I'm now on 3 rd biologic and 20 mg Mtx after having tried everything else - to no affect. Having said this, I do have visible damage . In the past 20 months, I have had both hips replaced, both knees replaced, foot surgery and now to have both elbows done.
My issue is, nothing is slowing the progression of disease down.
It's just such a difficult condition to manage, isn't it?
I wish you all the very best and hopefully, someone will be along
Soon to offer further advice.
Hi Eiram... that's horrible to hear you've gone through so much joint damage. Have you considered the infection possibility? There are many folks who get a root canal removed and their health comes back. I'm thinking it could explain why some of us are not helped by the meds, diets, supplements, etc. Something to consider. Also, have you been checked for lyme via a good test?
I'm most scared of permanent joint damage, especially with the high anti-ccp, which is strongly tied to a more progressive and damaging RA. May I ask.. how do you know the difference between joint pain and joint damage? Do the joints just stop working, or do they just swell up to the point where the damage is inevitable?
Thanks for the response NFN
I haven't been aware of any infection; certainly nothing has been picked up on? Neither have I been tested for Lyme disease. Initially, when investigations began, I was tested for bone cancer, such was the speed of the onset / damage.
The difference between joint pain and joint damage? I'm of the view if there's pain, there is some kind of damage but that may not be entirely accurate? I only know with me, the pain began in my hip. Over the period of 3 months, it went from occasional pain to crippling , I could barely walk. Then my hands swelled and over the course of maybe 2 weeks, my fingers became very deformed - 6 of them cannot really move/ can't make a fist etc. However, I wasn't aware of any pain in my knees and the damage done to them was huge. Hips were replaced (together at same time) and 3 months later, they replaced my knees, together at the same time - so, not sure that this helps answer your question, it that's my experience
Marie
Wow... I'm blown away that your hands went from being non deformed to deformed in just a couple of weeks? That's crazy! Do you know if your AS and PA move more quickly than RA? I just looked up those two diseases as I wasn't very familiar. You've been through a lot of agony.
I really wanted to give the LDN a full 6 months to see if could work, but after hearing your story, maybe I should go on Methotrexate soon. You've got me concerned that I am playing Russian Roulette. Then again, maybe your diseases are more quickly moving.
Since nothing appears to be working for you, maybe look into LDN. There is a facebook group called "LDN Got Endorphines" that has great information and a larger user base where you can ask questions in you're unfamiliar. Maybe also look into the connection between root canals and auto-immune disorders. Maybe an infection or parasite is the cause of your ailments. Or a thyroid issue. And maybe look into Igenix lyme testing.
I've heard many success stories of folks finding the strangest of culprits... where they try every medicine but find out 10 years later that they had a mold or mercury toxicity, or a bacterial or parasite infections, or lyme disease that wasn't picked up in normal blood labs.
Maybe you've heard all this before. I"m just trying to share some things I've read.
did the pain stop in the hips and knees.
after being replaced? Yes