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
yeah nigh time is supposed to bring respite but when I can't rest any of the joints on the 4 inch memory foam topper without a negative response from my body that makes my body and mind grimace.
I like the visuals. I have metaphors also for how I feel about the pain. I have a couple of RA buddies who use mechanized wheelchairs or scooters that is why I asked about the mobility.
Can law school put an accommodation on file for you if you need it? Is your day time job at the law office supportive or do you need an FLMA on file?
what type of law do you want to practice when you graduate?
I hope you get some pm's with referrals in your area. I am on the other coast but my son studied at CCA. I love your current abode. what is the teaching hospital that is in San Francisco can you start there? Not sure if you are constrained by your health insurance.
depot
First, steroids are no longer the main treatment for RA, and haven't been for 20 years. Steroids just cover up the pain and symptoms, but does not in any way stop the disease. So, you could feel better, while the damage gets worse and worse, and attacks organs, not just joints. A lot of people start on it, just to see if it helps. Then they go onto real meds, and get off the steroids, which are really not nice drugs.
The first category of drugs are DMARDs, which are Disease-Modifying Anti-Rheumatic Drugs. They go into the bone marrow, and attack where the nodules are being made to stop it. The main DMARDS are Plaquenil, Methotrexate, Sulfasalazine and Arava. I guess there are all anti-inflammatories, from older ones like Naproxen to newer generation ones like Celebrex. (I've been on them all.) These are mostly pills, but Methotrexate injectable is more effective, and less side effects than the pills.
I could not get a diagnosis, because I was sero-negative in the early years (4, to be exact!), I am MUCH worse than if I had been given DMARDs from the start. Instead, I got rapidly worse, and had to move onto the next category of meds - biologics. These are active bacteria, that have side effects of stopping the RA. (A good thing!) They are expensive, especially in the US, but they were the turning point in my treatment, like many others. The names of these include Humira, Enbrel, Simponi, Cimza, Actemra, Rituxan, Orencia and Kineret. All these drugs are either injectable, or given in infusions, or sometimes either. Xeljanz is a new small molecule biologic that is in pill form. It didn't work for me, but I have heard of people it worked for.
Usually, if you have to move up, a combination of a DMARD or two with a biologic, depending upon how bad you are, is the best way to treat the disease if it is moderate to severe.
As for side effects, we are all different. I've been quite lucky, nothing horrible, although some minor things. Or things that drove me off the drugs, like Rituxan damaging my lungs, or having to go off mthx because my liver enzymes were so elevated. For most of the drugs, people do feel sick for a while, but the body usually adapts. Mthx made me very nauseous for the first 6 weeks or so back in 2000. Then, 7 years later I went back on it, and I was sick for one day the first injection and 2 hours the second injection. I have to think my body must have remembered it. But even then, the nausea wasn't hard to deal with.
As for trying to control RA with diet, you may reduce the pain, I have heard (certainly didn't work for me!) but I do believe the damage will continue. Your immune system will not get messed up, because it ALREADY IS messed up! What can I say? The object is to stop the auto-immune system from attacking your body, which really needs drugs that stop the progression of the disease. This disease is genetic, and probably you did have some kind of stressful trigger. The point is, once triggered, RA seldom goes into remission, without meds.
I am going to urge you to see a rheumatologist immediately. And don't be afraid of the drugs! I was the most natural person you could imagine. I grew most of my own food, and I was an organic vegetarian from the time I was 17. I got RA at age 44. So many years of living in the country breathing clean air, drinking the best water you could imagine, and lots and lots of exercise.
Sadly, this disease does tend to attack Type A personalities. I could give you my stories of my dance company, and all the sports, hiking and walking I was into before RA. BUT, it doesn't have to stop. When I got my disease 100% under control with Kineret and mthx, I got into bicycling. I was riding about 30-35 km every other day, alternating with heavy weights and loads of stretches. I did it for nearly 10 years, until a big med failure 2 years ago. I am slowly recovering, but now I have to take a triple combo, Mthx, Arava and Orencia. And that doesn't count anti-inflammatories and pain killers. Or the splints and devices I have to hold various joints in place, or the cane I need to walk.
Good nutrition is always important for everyone! Keep that up! I don't process food very well anymore, so I take a lot of vitamin and mineral supplements. But not herbs - too many things to go wrong with herbs and those sorts of supplements. So no, apple cider vinegar or numeric, won't cure RA. It didn't even touch me!
So, a long post for me! Basically, I cannot urge you enough to get to see a rheumatologist and get on some good strong meds to stop the disease. Let us know what you decide to do, one way or another.
depot
I recently switched to Kaiser for my health insurance, and found they have a rheumatology center with two doctors right in Oakland so pretty close by. I will be getting a referral there next week, so I will be able to see a specialist. I am a little scared to start treatments that will compromise my immune system, but as Marlene mentioned, at this point my immune system is misbehaving and isn't doing me much good anyhow.
<3
I am really inspired to encourage more research about RA. It is really disappointing that there is so little
Don't be afraid of the meds. Post your questions here and hopefully you can get the answers you need.
There was a post a couple of months ago about school issues. There were some good recommendations about ways to help people going to school and dealing with this disease. You may find that helpful.