Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I agree, it is wonderful to have a strain of RA that is amenable to diet changes alone. I myself have seropositive RA with erosive changes as well as Sjogrens and Lupus overlap at the age of 26.
I have experimented with diet changes, lifestyle changes, seeing a naturopath, seeing a therapist to decrease stress, seeing an allergist to look for food triggers, ETC. Through experimenting, I have found that YES, I feel better overall when I eat better, but my personal disease will not be inactive without the help of the immunosuppression. I have NO food allergies. I know I am sore when I eat a lot of grains, but I also know I am sore when the barometric pressure drops, or if I work a shift longer than 12 hours, or if I don't sleep at least 6 hours at night. I just can't control all the factors involved.
This has been a deep struggle for me, because who doesn't wish they would feel better without the meds?!? It is very frustrating to constantly hear there is something ELSE I could try to holistically "cure" this. I went from being thrilled the biologics worked so well for me, to being ashamed I was taking them, because so many were seeing results without medication.
Sorry for the vent. With that being said - I am very happy for you that you have found such success without meds. I honestly wish I could survive without the meds too.
But - Sally, the good thing is that we can eat whatever we like because our diet will not change the course of our disease, and we are free to use whatever makes you feel better because they can't stop this train with medicine.
I do gentle stretches and use heat pads. and something yummy to eat - good music and uplifting people. That's the best medicine I know about.
and sulfasalazine of course!!!
I try to avoid situations that get me upset and pump up my inflammation. I hope I didn't misspell anything because my eyesight is going away because of my arthritis too but don't get yourself stirred up. Not everybody on this site has RA but some erroneously THINK they do because the drug companies have allowed spondyloarthropathies that mimic RA and that can be tamed with medicines and diet (more sales!!!) to be confused with rheumatoid arthritis, but it is NOT the same thing and the prognosis is not the same either.
this is my observation and opinion so don't get mad y'all
Linzsey, I'm highly curious where you are getting your information about spondyloarthropathies. It's what I actually have- my doctor vacillates between psoriatic arthritis with central involvement and ankylosing spondylitis with peripheral involvement. The diseases in this family are autoimmune and have a genetic basis, and none of them respond to diet, if you believe the evidence-based medicine folk and not Dr. Oz and the naturopaths. Reactive arthritis, also known as Reiter's Syndrome, sometimes does respond to antibiotics, but the rest of us are sucking down methotrexate, NSAIDs, steroids, and biologics at the same rate as the RA crew, and sustaining similar levels of damage and disability, especially in the absence of biologics. One form, arthritis mutilans, is the single most destructive form of inflammatory arthritis.
I was able to find 2 RF values from my online records. Back on 12/21/10 my RF was 1:160 titer, and my Anti-ccp was >250. The other RF value from a different hospital back on 3/9/12 was 25 (normal range is 0-14 IU/ml). So yes, I am positive without a doubt.
Hey if what you shared Flack5150 helps one person then thank you.
I guess in some ways we are a wee bit "gun shy" so to speak.
Perhaps this will give consideration for some as far as allergy testing, getting those vit. Levels checked & so on....
Although most of us know it's a small category so many do not fit into.
Learn something new here all the time & obtain confirmation on what we already think. Medical science has a distance to go with this disease. Reading Linzeys reply just confirms my opinion. How sad that misdiagnosis can occur so easily. How sad those testing negative are still left to worry about obtaining treatment while left to suffer.
Very interesting RA Sally.
Just seen a segment couple weeks ago on local news about pace maker type device now being used for obesity.
Would love to see an alternative treatment that may help RA patients in the near future.
God knows we do not choose to take these meds that can bring their own set of problems & add threats to our health.
Can only speak for myself. Although I think so many of us have heard or tried so many alternative methods only to be left with negative results. Yet we face those who believe we can "cure" ourselves if only we would eat this, try this, do this......funny most don't live in these painful bodies that refuse to cooperate & flush dreams down the toilet.
Hard enough to live with & accept. So yes certain subjects can be touchy.
Can't help but think if there was something out there that worked so well for so many we would hear about it.
Now I resist the urge to scream when hearing of the latest & greatest. Only I did scream the last time someone told me if I'd only try to add these things to my diet I'd be fine. I'm sick not stupid.
My RA appears to be genetic strong. My concern is for my children & grandchildren. I'd certainly do whatever I could if it would control the beast.
Sammy
I too get tired of people telling me to just take some Tylenol, or that I better be careful of the meds I take (like I would intentionally poison myself), or that if I exercise or sleep more I would feel better, or why did I go gluten-free that is just a fad.
It is such a shame that there is not one thing that works for everyone and this could all be over and I could have my life before RA back.
I don't know of one person who wouldn't do what they could to go back to a healthy state.
Just love the people here.
Point well made Jen.
This disease can effect patients so differently.
Now Alto I'll admit to feeling "stupid" many a days but I know it's not me.
I went from taking on disability for my nephew with MS, tackling a township to change an ordinance, pretty much became the family go getter to such brain fog I can't spit the words out. Even struggle with spelling simple words to double checking I did not put my phone in the fridge.
Yet I know there's a reason for all of this.
It's hard for people to believe or comprehend but this is how nasty it can be.
Perhaps people just find it hard to accept such scary life changing things exist. Then again you will always have your "I know everything" people that just want to be right. You know the type that convince theirselves they found the cause or cure & that's that.
Medical science is wrong, we don't know what we are talking about & if we'd only listen all would be well......
The ones you want to tell to shut their mouths & open their ears..
Probably should not talk about family Huh? LOL
Oh well if I don't find that "back up jack" treatment soon for this butt kicking disease I may pay Blue a vist in Hickville throw some rocks & who knows write a old fashion country song about the good ole days.
I may finally be loosing it here.
Sammy
Here is one link that I grabbed as a starting point to anyone who would be interested in some of the main differences and also the similarities in our maladies.
http://www.arthritisvic.org.au/Conditions-and-Symptoms/Spondyloarthritis
http://www.rheumatology.org/education/training/Seronegative_Spondyloarthropathies.asp
also, I was glad to see that ICD-10 has called the providers to pay attention to the differences in the diagnoses - in the past RA only had a short description of the disease without much explanation of the who what where whens and hows.
Also, I am a patient, with a combination of RA, OA, and every kind of "itis" throughout my body.
The main thing that I was trying to convey is that RA drugs are more efficient for seronegative maladies than seropositive ones which is why some of us have more success and some of us have more side effects and not much help.
You guys and girls are absolutely fabulous and I am happy to be in the mix with you trying to figure it all out.
This is only my point of view and I am not trying to make anyone feel bad or dismiss anyone because arthritis hurts and when it's twisting your fingers and toes into a new shape it is not an invisible problem.
You guys understand more than family and friends!!
Thank you for not getting mad at me
Now that we've completely hijacked Flack5150's thread . . . anyone use a naturopath?
Never heard that. Interesting.
These meds are scary & so many are fearful of starting treatment.
I have to believe patients would be more then a little open to seeking out any existing triggers. Then again the subject of lack of education on this disease is often a hot topic. As education should start with the treating physician & that rarely happens. Not once did my doc bring up possible triggers.
As patients we are responsabile for advocating & educating still we should hear about more then just joint pain on this disease from the treating physicians.
Did kind of hi jack here. Sorry.
Always willing to learn.
Sammy
Psoriatic arthritis was only recognized as a seperate disease about 40 years ago. It's one where the outer manifestations are very similar to RA, but the histological changes are different. Better research, better imaging, the differences became clearer.
I'll be that in time RA diagnoses will become even more specific. There seem to be something like 30 or 50 genes involved in inflammatory arthritis. Time will probably tell more about which mean what, both for diagnosis and treatment. The Vectra test might be a first step in this direction. There are probably more divisions yet to come: what we now call "rheumatoid arthritis" is probably still a cluster of similar but not identical disorders.
I am sero negitive. I was seeing an alternative MD three years before I was diagnosed. He originally diagnosed me with Mercury poisoning. Cleation therapy reduced the Mercury levels, and for a while I felt fabulous. I even trained and climbed a mountain. Looking back, after that climb I had one nasty flare, could not move for a week. Once I was diagnosed, the alternative doc was very clear that I should take all RA meds my Ruemy wanted me to take. He helped me a lot, and I still take the supplements he gave me.
The RA meds help a lot, but I still suffer from many aches and pains and have a few other symptoms involving internal organs.
But nothing has helped my piece of mind like the people and information shared on this forum. I would be completely crazy without all of you. Thank you everyone!
Lynne