Rheumatoid Arthritis

[busymominfo]

HELP !!! I am being sent from my PCP to a Rhematologist after having problems. The PCP took blood work and it was positive for RA.

Can someone out there who has gone through this help me out? I am only 37 and I am overwhelmed after reading all the info on the web.

Thanks for all your help!!

[bearlister]

Hi I have RA and let me tell you there are days that I don't feel good. If your Dr. is sending you to a specialist that is great because there is really good medicine out there now that does help. I have been on a lot of different meds. for it and I am on one now that really helps I take Orencia I have to have it through a I.V. every 4 weeks but you can go a little longer on it and there are some that you can do at home. I have had it all my life and I am only 40 but it really didn't progress until later on. Just don't let it scare you because you can go on and do things like you use to do believe me. I can always tell when it is going to snow or rain because I ache a lot. I don't know if this helped you any but please don't let it scare you I promise you it will be alright because I was scared at first when I found out I had it and my Dr. told me not to because now they have med. that can help it out. I have RA all over my elbows,knees,feet shoulders etc. I work in a school cafeteria and I am on my feet all day long...lol Sry. this is so long.

[Barbie08]

Hello, I donot have RA, but my mother does. I have chronic pain from having leukemia twice, so the 2 of us are a pair. When visiting my parents I watch mom inject herself twice a week. I also watch her cook, clean, drive, work in her flower garden, do laundry and go to the Wal Mart to grocery shop. I know she has bad days, but now that she is on a good medicine the good outway the bad.

As for me I have Fibromyalgia and joint and knee pain from endless amounts of chemo. So the best thing i can tell you, especially while you are getting established with a specialist. If you are having a better off dead day, take the pain meds they give you, put on your most comfy pajamas and get on the couch or in the bed because tommorrow will be a better day!

[busymominfo]

Thank you both for your words of encouragement. You have both made me so much better!!!!!

[Whispered]

Its a really weird disease...imo.. bc you can look totally fine, on the outside and be hurting so bad , inside.

The first thing, I'd encourage you, to do is get, a really really good RHEM Dr.. and get on and stay on the major bio meds.
I've had it for for 5 yrs now and still need need a helper, to help clean, do tasks, etc around the house. Going up stairs is really painful. I had to move from my upstairs apt, to a downstairs apt.

I find it very challenging, we've had a long post, on here, some believe just doing a holistic, non flours, sugar, etc type of diet will work. I'm sure it might.for a short time... but as my Dr has said over and over.. that will NOT stop the disformanties, that will eventually occur.. and i'm not ready to take that chance.!!

I also have fibro, and am on disability ( was on that before, thankfully, before i had gotten this, whew!) bc I couldn't work w/ this, no way!).

I find, that i have to regulate things, if i do just even a few things, one day, the next couple days, i know i'm going to be knackered (quite tired) and just plan on resting, for the rest of the day or next 2 or 3 days.

Its one of those things, where you learn what your limits are. Like for example, one store, I can go in and walk around in, but the next, I'll need an electric wheelchair.. and thats on a "good day".

Be kind to yourself, gentle. Exercise, if you can, hard, hard, hard, to do!
Swimming , i find , in a heated pool, w/ therapists, is wonderful.

Learn, to find out what foods, may trigger a "flare" and make you feel worse. Humidity, heat , severe cold.. brrr , alll these things.

Good Luck and feel free, to keep asking ?s :)~, If you don't think you can work .. or the potential, you might not be able to, .. file immediately .. imo..find a good attorney... talk w/ them.. and start the 2=5 yr process..
Wish the best for you~

[busymominfo]

Okay - Pills have not been working. Had my first Remicade IV yesterday. Has anyone else ever done the Remicade and if so, how long did it take. I go back in 2 weeks for another one and then 4 weeks after that and then every 8 weeks hopefully.

Did you have any side effects? I read about it online but wanted to see what people out there really had.

Thanks!

[bigsweetie]

What pills were you on?

My DH has RA. He is also 37. He started taking Methotrexate and within a couple of months he's doing so much better. He has to have another blood test done, but it looks like he may be in remission.

I pray these treatements work for you!

Take care!

[meggers]

Gentle hugs. I know it's difficult. I was 24 when I was diagnosed with an autoimmune disorder that's in the family of Lupus. I took methotrexate also. They let me give myself shots at home, but it also comes in pills. The shots are the absolute cheapest meds for severe arthritis on the market, I believe. If you're in a lot of pain, they can give you cortisone injections until the meds kick in. It's not the best solution, but sometimes it's just needed.

Below is a story about understanding those with "But You Don't Look Sick" illnesses. This story speaks specifically of Lupus, but you could easily remove "Lupus" and replace with many autoimmune disorders that affect the body's cells, joints & muscles, including RA.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up.

You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.

Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino
*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

[newatthis]

Well, I am 29 and have had RA since i was 20. I technically have Enteropathic Athritis, which is RA and a bowel disease, mine is Ulcerative Colitis. When my UC gets bad the RA does too. It's been tough. I am in a major flare now, but when I had my colon removed 8 yrs ago, my arthritis went into remission. I am looking at taking Remicade, bc it is good for both RA and UC. I have used Methotrexate, Arava, Enbrel, and of course, all the NSAIDS- and I do mean all. Also, some of the non narcotic pain meds.

My best advice is to read read read all you can about your disease and don't just settle for a Rheumatologist. Go to multiple ones if you have to, and I have to many before I found one that I liked and that was knowledgeable and proactive. It is tough like meggers said to have a disease no one can actually see. I have 2 little kids and the main thing I have to remember is not to overdo it. I have to pace myself and on the days I feel like crap, I have to let someone take care of my kids and let my house work go. My family and friends are great about helping me thankfully.


I have been seeing a dr at the Cleveland Clinic- it is a 5 hr drive for me (one way) but I was very happy with him. Definitely look for the best specialist in your area. i am also trying chiropractic care right now. We'll see how it goes; I have never done it before.

Good Luck!

[meggers]

Is anyone here taking Glucosamine?

My Rheumatologist told me I could try it, but couldn't guarantee it would work. I bought some the other day & am on my 2nd day. I'm also going to start taking fish oil. It's supposed to be good for inflammation.

I have never been into this kind of treatment, so I'm really not one to tout all the herbal remedies. I guess I'm just tired of feeling rotten & am at a point where I'm willing to give a couple of things a shot.