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...
Hi, I am Elena, and I'm 25. This is my story:
When I was a little girl I had a recurring nightmare that I could not defend myself because when I tried to throw a punch, my arm was too heavy, painfully hard to move, and it would only slowly move in the direction I wanted, making my dream self feel weak and useless. Luckily real life for me was nothing like that, I was a judo player, a horseback rider, a cheerleader, a dancer, and a boxer. A daredevil who love to move, dance, swim, jump, and try new things.
I have always been this way, with that spirit, until this passed summer. After a traumatic few months of stress from my personal life, I began to have unbearable pain preventing my from lifting my arms and closing my hands...finally after a month or so of thinking I had carpal tunnel, it went away, but a stiffness in my palms remained. Maybe a month or two later, my feet puffed up like balloons, I could barely walk and I was in excruciating pain. My gut told me these strange occurrences were related..months went by and the pain intermittently affected the joints of my knees, feet, arms, hands, and shoulders. I was in agony.
My father is a D.O., a chriopracter with brilliant knowledge of nutrition and the body. He ordered some blood tests, and many of the RA indicators were off the charts, the highest possible. Since then I have been on all kinds of vitamins and eating an anti inflammatory diet, very strict. My whole lifestyle has changed. I am not in desperate agony anymore, the pain has reduced a lot, but it isn't gone. It hasn't been a year even yet since I started living with this condition, so I am hoping with long term nutrition I can put it in to remission...but I know that is everyone's dream.
I joined this group, because lately I am sad, I cry alone. I pick up the phone to call my mom or sister to talk about it but I can't help filling the calls minutes with things that make us happy, because it hurts me to make others feel my pain..but here's what I am dealing with. I want to live my life and I want to feel like myself, but RA is always there preventing me from acting as I usually would and doing the things I love. I feel less interesting and like I have less to share with others, I feel less attractive and am less confident about starting a new relationship, because I don't know what my talents are anymore, what I have to give, and what my personality can be now that I'm forced to change. I want to learn to do art, or sing maybe. I feel as though I need to develop other parts of me to make up for the mobility I've lost, to feel proud of myself and excited about life. I can no longer do the yoga poses I used to, everything is modified and some mornings I feel crippled.
This is a really hard journey, I am trying to keep my head up, but as my screen name tells, I feel like I am bound with the invisible shackles of this disease. Sometimes i desparately want to break them, but I have to live with them. If anyone has any inspiration or guidance that might help me in my quest to finding out how to be me with this condition, I would be so appreciative.
Lots of love
E
depot
I guess after reading some of the other responses, I see some of you have been able to put RA into remission, but through actual immunosuppressent drugs. Have they been helpful, or do you feel like you are at risk of getting very ill? A lot of reading I did said my life expectancy would be shortened and I may need surgeries or have opportunistic infections down the line. That all really freaked me out, so I have been dedicated to trying to put this in remission homeopathically.
Of course, I also want to get better and live a normal life. Have any of you tried other remedies? Do you think the only option are steroids that suppress my immune system?
What's so hard to wrap my head around is the fact that no one knows where this disease comes from, and the research is pathetic at best.
I know, or at least I hope that all of this pain and struggle is building strength in my spirit for something amazing in my path's journey, but it is so hard sometimes. Waking up in the morning, I feel like I am breaking my bones when I try to life my arms, I have trouble sleeping.
My father lives on the other side of the country, but he's been ordering blood tests and sending my nutrition and vitamins since we found out I had RA. It was after months of my being in pain and so confused about why.
I am still trying to figure out the best plan to tackle this...open to any and all suggestions.
<3
Sorry to hear about your struggles with what "appears to be" RA. I'm not a doctor but I do know after being on this forum for a while now & with my own experience of having RA, going through medicated remission & then going completely off only for the RA to slowly but surely creep back into my life after about a year or so.
1st off, RA is a "Chronic" disease & the best course of action especially with you being so young is aggressive DMARD treatment. The steriods you speak of typically is only a temporary band aid basically to get your inflammation & swelling down & control the pain. For many like myself it worked miracles but it's not a long term drug. During this time your Rheumatologist will start figuring out what DMAR or Biologic will be best for you. A lot of people start out with a drug called Methotrexate. What you will read will make you believe it's the most scariest drug out there but it's been around for decades & has proven itself to be one of the most effective DMARDS on the market today. So if you're given this, don't be scared off!
Controlling the pain is only 1 part of the disease, it's possible (but not very effective) to control the pain with nutrician but don't fall for the "snake oil" about "curing yourself with diet" of RA. The 2nd part is the damage & deformities that "can" happen if you don't treat it aggressively NOW! For some it takes years before the damage happens for others it happens very, very quickly if not treated properly. The DMARD helps keep the damage & deformities at bay.
Also, on a brighter note. The medical establishment (from what it appears) are always coming out with newer, more affective treatments. It really does seem like they're paying real close attention to immune system disease. Maybe they feel like it's a disease they can get a grip on?
Anway, good luck & seek a good Rheumy soon!
I agree with the other comments above - steroids are not "treatment" of RA, rather can help get control of a flare or help in diagnosis. RA meds -- a biologic and DMARD are standard of care therapies. I have been on Humira and MTX for most of the past 3 years -- like Oceans I stopped meds for about 9 months, only to recently restart due to increased symptoms. The main issue is preventing permanent damage to your joints, and also hopefully control pain. You may read about people having side effects, etc. Some people do and some do not, some have bad illnesses and problems, and some much less severe. I have had no significant infections despite a lot of exposure to infections. I have had very little in the way of side effects. So I feel very lucky. Despite very mild symptoms, limited to my hands and wrists, I take these meds to try to prevent permanent damage in the future.
I do not use special nutrients or diet....I would do so for overall nutrition or to lose a little weight, but not with the thought that could cure or control my RA.
I have only been dealing with this for less than a year, and we didn't do blood tests untill several months had went by and we were freaking out wondering what was wrong with me. I live in california but my family is in florida, after my parents visited last year, thats when we decided to do some tests.
I was hoping that my feet and hand problem were unrelated but something in my gut was really concerned, because there was no cause for the issues. Anyways, on the blood test my RA latex turbid and my CCP antibodies were extremely high, far beyond normal levels. So I started changing my lifestyle and diet, and was waiting to see if I improved before figured out if I needed to see a rhuemologist. Initially, I didn't know what was going on and I didn't want to see a specialist, especially if there was no reaaon. Anyways now I am thinking more long term. But I don't want to cripple my immune system and be susceptible to getting really sick from side affects or opportunistic infection...basically I don't want to end up in hospitals or doctors offices over and over.
Diet and natural anti-inflammatories can help with symptomatic relief in MILD cases. It will not help more severe forms of the disease or more severe periods.
MORE IMPORTANTLY no diet and no natural nti-inflams will help stop the progression of the disease. I want you to see this video of me: http://tinyurl.com/MirahRA-video
I share that not to scare you but to warn you of the reality. RA is a PROGRESSIVE, incurable, crippling disease...but it can be stopped and put into remission and the progression halted. Not with steroids. That's just a stop-gap measure. The property treatment for RA is DMRADS and biologics such as Humira, Orencia, Simponi, Zeljanz or Enbrel usually prescribed together with Methotrexate.
Talk this over with your father AND with rheumatologist. Do not be afraid to see a rheumatologist! You have a serious disease and need proper treatment. Diet can be a supplement but the meds are a NECESSITY for survival if you want to live a normal, active life or not. It's that simple.
I know because before I wa son Biologics, I had a p[ueral effusion and was hospitalized for a week having the fluid around my lungs drained. the fluid was biopsied and it was RA fluid!! Heart complications are the most serious and common complication of RA. You cannot treat this with diet alone. VERY, very risky!! I think your dad may be over his head.
I am sorry you are hurting. I hope you get to talk to an immune specialist such as a rheumatologist soon if not just to converse and go over your bloodwork and shoot the hay and perhaps image a couple joints in the MRI can to have a baseline of one's erosive joint activity. I had wrist MRI's done at diagnosis and the picture was worth a heck of a lot of words. I consider my rheumatologist the silver lining in this crappy disease. I have such appreciation for her work on my case.
depot
@depot, I use the word crippled because some days I do feel that way. I have taken days of work at times when my feet have been in too much pain to walk, or when I could not lift my arms past my hips without intense pain. The pain is reduced significantly when I stick to my diet, but overnight my immune system becomes very active and I painfully struggle to even grab and move the position of my blankets in the morning. The past couple night for example, it has been my hands and my shoulder and it is so painful to move into the one position I can sleep in. I can't put any pressure on my hands, even when the pain is low, or they give, and I cannot open with my fingers twist caps on water bottles, I have to use my mouth, I know it sounds silly. I am actually in law school by niget, and working by day at a law office as a paralegal. So my life is quite busy.
In my story, I describe the recurring nightmare I had as a child because that is the exact same sensation I have in the morning or during a flare up when I try to extend my arm, or use my hands. Like ithe takes all my strength the reach, only to fall in pain. Sorry for the visuals, I'm a bit of a poet.
So the test results i mentiomed were:
RA latex turbid was 328.5 iu/ml, and CCP antibodies was >250 units (test doesn't say how much above 250)
Just theowing thia out thwre, does anyone have a ruemy doc they would suggest in the San Francisco Bay area? Not sure if any of you are in california, but I am in the east bay.