Hey everybody just had a question..

Hi Jeanne,

Wow, yeah. I know exactly what you mean. I have said the same things and heard them from others and read the same comments over and over...You are in the same boat with many others.

There is hope about the weakness. It may not stay that bad always. After you are on treatment for a while, it can get better. For many people it does.

About the way people don't get it:

Jeanne this has so affected me so much that I work about 20 hours a week just trying to find ways to attack this problem. I have just started blogging about this a week ago.

There is a lot of support to be found. You are not lazy or nuts. You are not alone even though you may be the only one like you that you know right now. 

It might  help to get your family to read some articles or stories you find about RA and other RA-ers. Maybe they would look at this site. or my blog - it is written just for this reason.

I know it's hard. It will probaby get better. Are you seeing a good rheumatologist and getting treatment that you need? This site is a safe place to ask whatever you need to . Hope you feel better soon, Kelly

www.rawarrior.blogspot.com

my gp and rheumy prescribed wrist splints for both my hands. they look like something someone with carpal tunnel would where with added thumb spikes. at first they sent me to ortho and they made me some splints out of this plastic webbing that hardens after molding it to your hands. Now I just where the velcro splints, they recommended 2 hours per day which can be hard, cause its hard to even pick up a glass with them on, but i do try and for that 2 hours my hands feel good, they are not subjected to the movement and bumping of normal use. I guess if no other thing I get the much needed rest time for my hands. ask your doc about seeing an ortho doc for splints.

I feel for you.  RA often doesn't show much but it sounds like you can see it in your hands and your brothers could see that.  I agree with the other comment, find a good but short, maybe 2 page article explaining what RA is and give it to your family members.  Perhaps say, this is what I am struggling with- it is an autoimmune disorder.  It is not the arthritis people get in old age.  Explain how it is affecting your hands.  Ask for their feedback, would they like to help you research it?  Would they like to know ways to help you cope in daily life?  I think there is also good advice for loved ones of those with RA that you could also give them on this web site.  Educate others but don't feel you have to defend yourself.

Cheers,

Jamie

Hi Jeanne,

Just wondering if your doctor could give you some literature/brochures about RA for your family ... and/or write a note about what your limitations are.  I sure know about losing strength - I lost about 3/4 of my strength and what I could do still hurt a bunch.  Certain people at my job thought I was taking a lot of time off for doctor's appointments, but it was necessary.  Keep educating yourself, get the best treatment you can find that suits your situation, and things will likely improve over time.  But it DOES take time, and the first year is a roller coaster (see Lena Andersen's post about the first year.

     Although I never expected to get RA, it is in my family (grandmother, aunt, cousin all have it or had it while alive).  That helped me understand slightly what impact it would have, but nothing really prepares you for what is happening to your body.  YOU are not doing it, causing the disease/disability, but there may be somethings you can do to lessen the impact or stress, by finding out if (for you) some foods make it better or worse, some life/style activities (prayer/meditation) help you deal with the stress of all of this.  Again, it's not an overnight thing, it really takes some time and support to find out.  If you can point out to your family that you weren't like this before and you did not choose it, but you also have to be honest about what you and can't do, and putting too much stress on your body/joints  before the treatment starts to help may actually make things worse.  It's not a question of laziness at all. It's like "Believe me, if I COULD, I WOULD, but I CAN"T right now!"

Best wishes,

Ellen

Hi Jeanne - I know, it is a tough struggle with the disease.  I have had it for 12 years and am on a Biologic which has made a difference, but I still have tons of pain etc.  Regarding the splints, I sure would like one for my ring finger which has started to curl up all the time.  You can find them at the drug store, but they are for "broken fingers" and not quite what you want.  Ask your doctor about putting you on a biologic, such as Enbrel or Humira.

Joan

I understand how you feel when it time to do the things you use to do.My husband don't really understand my RA. All he see is that I don't move as fast as I use too,and things don't get done like I use to do[housework,cooking].I put myself first now.A lot of relative don't understand ad it can be frustating.You do what you can and that it.

I understand how you feel when it time to do the things you use to do.My husband don't really understand my RA. All he see is that I don't move as fast as I use too,and things don't get done like I use to do[housework,cooking].I put myself first now.A lot of relative don't understand ad it can be frustating.You do what you can and that it. Best Wish  Marvette

Just be patient with yourself and with others. Honor yourself. It has been a trying time for me. I have had RA for 9 months.  I recall when I had to ask a friend to come over and help me dry my hair because it was so painful and I could barely lift the blankets off my bed to get up in the morning! I praise God that meds have helped me some. But mornings are still hard. I think what has helped me the most is having God in my life. Because I realize that it's not all up to me. I pray that he gives me the strength to get thru each morning. I keep praying for healing and realize that his Grace is sufficient for me.  The pain has become more manageable.  Pay attention to your body. I realize now that when I eat certain things the pain gets worse later that day and especially the next day. Things that trigger it for me are most meats, spicy food, chocolate, tomatoes and cheese. (cheese has been really hard to give up!) I get frustrated at times and keep testing if these foods cause the RA to flare up and they have. So you may want to keep track of if you feel worse what did you eat the day before and then try not eating that for a few days and then test it. My theory on the meat thing is that it has high amounts of protein and maybe it revs up my immunity system which is the problem with RA that our immunity system is overactive and results in inflamation.  Also what helped me alot until I got my meds to work was when Rheummy suggested that I take 800mg of Ibuprofen 3 times a day. This really helped at bed time.  Hang in there!  Blessings Rita

I was just diagnosed last week.  However, I believe I have had RA for about 3+ years now.  It took 20+ doctors and countless amount of blood tests before I was finally, and thankfully, diagnosed.

My wife has been very understanding because she has seen the effects this disease has had on me.  There are days that I can go all day, water ski, play basketball with my son, you name it.  Then there are days I can't get out of bed.

The only suggestion I can give you is to be open and honest with your brothers.  Show them what has happened to you, have them talk to your mother.  If she has been there with you, she knows.

My biggest problem was that people just didn't believe there was something wrong with me, it was in my head.  I have finally excepted that no matter what I say or do, some people will never accept my condition. 

Good luck, we all are here for you.

I found out I have RA about a month ago.  My doctor called a rheumy and explained the situation which he believed was also the beginning stages.  He told her what meds to prescribe and a week later I had a call to say he had a opening to see me in 2 days.  When I went to see him, NSAIDs had already started working so I was in a "remission" stage meaning between flare ups.  It was the first time I'd felt "normal" in almost 2 months!

On Sunday I missed on of my doses and by Monday it began to flare up.  Yesterday (Tuesday) I was home from work since it flared in my wrist, finger, shoulder and feet.  The fatigue was overwhelming and I slept most of the day.  I also have IBS which is aparently associated with RA and that flared up too.

When my husband got home from work he was tired from his day, saw that I had been home from work but decided he should be the one to rest now.  He doesn't understand what I'm going through.  Even though he's done some reading I believe he still thinks most of it is in my head.  Specially with the fatigue.  He thinks I'm lazy when I want to sleep.

I am also pretty young.  I just turned 27 on Friday.  We have a 2.5 year old daughter and it's so frustrating when all I want to do is rest but my husband decides it's his turn.  Nothing hurts me more than wanting to pass her off to my husband so I can sleep.  Even at bedtime she will ask me if I've taken my pills!  She's very smart for a 2 year old and very understanding (more so than my husband).  When I'm not feeling well she will usually calm down and give me a hug to make me feel better.  If only I could say the same for my hubby.

Through this site, I'm learning that I am not alone.  As hard as it is for us to accept, it's even harder for our families because they can't feel what we do.  The pain and fatigue make it seem more real for us but they don't feel it.  They just see we can't do as much as before and want to sleep more.  In their eyes that equals laziness.  My hope is they in time they will learn that it is so much more than they ever imagined.

Best wishes. 

Laura

Hi Jeanie, I'm sorry to hear you have this debilating disease. I have had it for 26 years, and have a lot of joint damage, but I am happy to have found something natural that has helped me to get it in remission. I no longer have to take medication and the inflamation rate is down below normal. I just wish I had known about this when I first got RA.

If you would like information about this suppliment please email me at landrews@xplornet.com 

I was very selective on who I told about the RA. My husband, my children and my father. I also told about three friends. Most people do not understand. I feel it is best to not tell everyone. Anyhow, I hope your family becomes more understanding. My family is very confused by it all too. Show your family the swelling in your hands. Make sure they know this is not just arthritis. We have a desease that is attacking our bones and making us tired. I hope you have a good doctor and have found the right medication for you. As for the gloves or braces....I do not use anything yet. Hopefully someone will answer you. I just wanted you to know I understand....KMolly

     RA is a tough thing to accept.  I was diagnosed about 2.5 years ago and I'm still uncomfortable with it.  It does get better.  Having a positive attitude will help you.  Educate yourself on RA.  I read everything I can get my hand on!  This wedsite helps A LOT!!!

     I also think that minimizing the amount of people that know about your RA will help too.  I have not told anyone that I work with about my RA.  I know that eventually I will have to, but I'm going to keep it under wraps as long as I can.  I have stuck with telling family only and this still causes issues.  Comments are still made about my sleeping more that I used to, not having the energy or being able to do some of the things that I used to do and the hints about laziness.  I try to explain, but they just don't get it.  People just can't seem to understand unless they are the ones going thru it!

     Keep your chin up.  You can do it!  Stay positive.  Visit this website frequently!  The people here will be of great help and support to you!  Good Luck! 

Hi

I've had RA for 30 years.  I went to Mayo Clinic a long time ago when my GP couldn't help me anymore. 

They sent me to a class for helping you out with thing for your daily living.  My hands were my biggest problem and I was working full time.  The occupational therapist gave me a hint for realieving pain quickly at work or home or anywhere.  This may seem crazy but it works and I've done if for years. 

Go to a sink, if you have a double sink all the better but if you don't this will still work.

The first side of the sink fill with the hottest water you can stand, the 2nd sink fll with cold water, or you can just let the water run from each spout.  Start putting your hands in the fot water for as long as you can then switch to the cold water.  Keep going back and forth till your hands feel better.  Usually it took about 5 minutes before I could go back to doing the things I was doing.  Women would catch me in the bathroom at work and thought I was nuts at first but they knew my problems and could not believe that I could go back and do my typing and other job functions.  So please give it a try cause it does work.

As to the family thing...try a family conference to get them abit familiar and when they forget and ask you to do something say something like "I sorry my disease will not let me do that, I feel bad about it and it hurts my feelings when you ask me to do things I cannot do.." Let them know how you feel..I know it is a hard road I have been in your shoes..keep trying...

Hi Jeanne,

I can relate to what you are experiencing.  It took me over 15 years to get a definite diagnosis.  I have a Mixed Connective Tissue Disease (lupus, RA, myositis and scleroderma) and Fibromyalgia.  I moved from Florida where I had wonderful healthcare to Georgia in June, and there are only 2 rheumys here.  The one I am seeing now scrapped everything my FL doctor did and started over.  I have been taken off of the infusion of Orencia I had started a few months before I left FL.  The reason I left FL is because my boyfriend of almost 10 years couldn't understand why I couldn't cook dinner every night and keep the house as clean as I used to.  You have to learn to listen to what your body tells you, and do what YOU need to do.  Don't let anyone push you into doing something you don't feel like, because you will pay for it the next day, and probably the next few days.  It's not worth it.  Educate them as well as you can, my BF was not interested in learning about what was going on with me.  I left everything I had in Alabama (my home, my youngest daughter, my job, etc.) to be with him in FL.  And he gave me 4 days to get out of "his" house.

I hope you feel better soon.  You may want to go online to dreamproducts.com.  They have some stretchy type gloves for under $15 that have helped me a lot.

Take care of yourself and put YOU first.

When it comes to siblings I have a firm belief that they will just never understand. Even when you let them feel your swollen, burning hot, and painfully red joints they think its something you can "walk off". It really isnt untill they experience something similar to RA, like getting hit by a semi-truck and the flu, do they get some frame of reference as to what you feel on a daily basis.

My advise, time just give it time. I know as a RA patient for 6, almost 7, years now being 24 years old it takes alot of time and patiences to allow siblings, parents, partners, and co-workers to get a small grasp as to what our daily struggles can be.

Secondly, be honest with yourself!! It sucks not being able to do things but atleast when you dont over exert yourself you can function the next day!  When i moved i used a dolly to carry just about everything and let other able bodied people handle the hard stuff . Just remember, your not lazy!!!!!!!!!! your a person with a disease!!!

Much luck!!

-Vicky

Be patient with your family, but you DEFINITELY need them in your corner.

When you talk about people "not getting it", I share your pain (pun intended). I am a BIG man, and I have had to learn to just walk away when people start doing things that could put stress on my joints. I learned that the hard way... the VERY hard way. My shoulder has been rebuilt, completely, 5 times and it is now an artificial joint. And it still hurts, a great deal. Although the joint replacement did away with the arthritis pain, what remains is all of the damage I did by NOT saying "NO!" because I thought people would somehow think less of me. It was DEFINITELY NOT WORTH IT!

It took a while, but I learned to either just walk away, or, when that was not possible, to find other things to do that would not put pressure on the shoulder. I admit that I would occasionally get some strange looks, but it works. Deliver cold drinks to the workers, work the checklist, volunteer to run to Starbucks, whatever it takes...

Good luck!

Hi,

    I have never tryed the supports but have been seriously thinking about them lately, I do use wraps on my ankles at times. One thing I found that really helps are the ThermaCare heat wraps, I've tried the wrist and neck ones and I use them all the time, especially if I am going to be using my hands and wrists.

    I was diagnoised in June of just this year (09) although, I have suffered for almost 7 years from pain and increasing fatigue, bouts of flare-ups and remissions. I remember days that just thinking about cleaning out a closet or scrubbing the bathtub would physically drain my energy. I also had days that washing mirrors and vaccuming furniture took more effort then I even had simply because I had a hard time holding the paper towels or vaccum hose.

    About 6 years ago I choose to become self employed. I had worked as a nurse for several years prior to opening a small scrapbooking store. I remember the day I knew my career of choice would need to change; I was giving a patient an injection and I could not get my wrist to react the way we had been taught, my fingers were swollen and stiff and the range of motion was very limited in my wrist, the needle bounced off the paients skin and I had to start over (luckily I was blessed and the injection was a success). It was a very scary experince for me and I realized that I did not want to have this happen again and began to explore a different path. I love nursing and miss it very much but I also know I made the right choice.

    My husband was supportive but confused as to why I would choose to give up my loved career, I never shared this experince with him until a few months ago (because at times I didn't fully understand my choice either), my family members have had a hard time excepting my limitations and also limit the family activites they invite me to or involve me in. They even limit the amount of help they give me because I can't do as much as I used to (it took me 3 years to redo my living room walls, texture, paint and wallpaper). 

    So, even though it saddens my heart and brings me down I have to remember that I am the one with RA, not them and that I am the only one who really understands my limitaions and that it's 'ok', and someday they will be 'ok' with it too. 

I have tired several. The best was rather expensive, I bought them at a local medical supply store($30.00) the next best, I ordered from Dreamproducts.com for half that price, they are effective in protection, swelling and warmth.They are worth trying. I hope your family comes to understand the condition.

Jeanne - I know how you feel.  When I was first diagnosed I was 28 and it was so hard to believe that I had this "old persons disease".  One way I was scared and the other feeling was relief that my doctors had finally figured out what was wrong with me.  It started mostly in my wrists.  I was always dropping plates, glasses, etc.  I still do some but I purchased the wrist guards with the metal in them.  I will wear them for a couple of days during the flare up and they seems to help me alot.  I am not sure about the gloves.  Good luck and do not overdo yourself no matter what your brothers say.  Trust me you will be the one to pay the price later with the flare up. 

I got my fingerless arthritis gloves through Amazon.com

Just do a search and look at the many places you can get them.  Mine are thin enough to wear at work or doing tasks at home but keep just enough pressure on my fingers so they don't hurt as bad.  They are grey and don't have bulky seams on them.