Thursday, May 31, 2012

Thursday, December 18, 2008 Jen asks

Q: I was sent by my Rheumatologist for reconditioning therapy. I was told to do water therapy instead.

Ok, here is my situation. I was diagnosed with RA in 2006. Since then, I have been receiving remicade infusions. I had to stop working last October due to what is referred to as Flare ups, I guess. It seems that I don't know what one is because I am always feeling tired and in pain. Anyway, I was a size 6 upon diagnosis and now I am pushing a 14, so needless to say... I cannot continue on this path, so my Doctor sent me for reconditioning therapy. I was very excited about it thinking that I would go there and learn to use the work out equipment and then begin working out on my own, only to be told that "I should not be stretching because it was bad for my joints, I would only be able to be put on a stationary bike for 5 minutes and I should do water therapy instead. I have no obvious physical signs of the RA. I have "tired and pain" written all over my face, but other than that I am physically unhealthy!!! She also told me that Yoga was a bad idea. I thought that would be great for me... I am lost... I am unable to talk to my doctor when things such as this arise because he is so busy!!! So I am desperately seeking some advice!!! I want my life back and I want to get back to work!!! I used to be so active and happy and now I find it hard to just get through the day!!! Any advice anyone can lend would be greatly appreciated!!! I am just very discouraged by what the therapist told me and I really want to enjoy my life to the fullest. She told me that if I went and started to work out on my own that I could damage my joints so badly that I may not be able to walk. This just doesn't sound right to me... I am only 39 and at the time of my diagnosis, I looked 10 years younger than my actual age and now... My friends and family tell me that this disease has aged me and taken away my smile and fun personality. HELP!!!

 

Happy Holidays and thanks again for any suggestions that will help to change my life!!!

 

Jen

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Answers (3)
Lene Andersen, Health Guide
12/21/08 8:38pm

It sounds to me like there are a number of things going on and I'm going to address them one at a time.

 

First of all, your weight and exercise. Losing weight when you have chronic pain is an uphill battle, but as possible. Eating a healthy, balanced diet with plenty of fruits and vegetables and engaging in gentle exercise will over time help you get to where you want to go. It is very important that you speak to your doctor before you choose your exercise. It's true that certain kinds of resistance exercises can damage your joints - I assume that the person you saw at the reconditioning therapy place was a physiotherapist? If yes, don't ignore what she said. Physiotherapists are experts in exercises to build ability for people who have injuries and illnesses affecting the joints and muscles. Water therapy and swimming are excellent forms of exercise for people with RA - it's gentle, yet very effective and will allow you to exercise in a medium that is easy for your joints and at the same time provides the natural resistance of the water, so it's a very good option. Other types of gentle exercise like tai chi and yoga may also be good, although I'd be curious to know why your therapist thought yoga was a bad idea. I'm pretty sure that if you choose one of the gentle forms of yoga and speak to the instructor regarding modifying the positions to accommodate your RA, it may work for you.

 

Second, I am concerned to hear that you feel you can't ask questions of your doctor because he is "busy". Your doctor is a member of your medical team and it is his job to provide your medical care - remember that he gets paid to do this. Providing your medical care includes being available to answer questions that are pertinent to your health and the management of your disease. Having a chronic illness requires becoming a strong advocate for yourself and it's a difficult transition for people who have previously been healthy. When healthy people go to the doctor for something acute like a sprained ankle, strep throat, etc., the doctor tells you what to do (take these pills, here's a note to work, etc.) and you follow the instructions. When you have a chronic illness, you are in charge, not the doctor - it's your body and your life and that means that you call the shots. Your team consists of your family doctor, you rheumatologist, your physiotherapist, etc., people who all provide you with information and advice, but you are the one who makes the decisions. If you feel you get rushed out of the office when you see your doctor, writing down your questions beforehand can be helpful. If you still feel rushed, speak to your doctor about it, tell him it's important that you have a conversation regarding these issues and if that doesn't help, find another doctor, one who will listen to you. Doctors provide a service, just like plumbers, interior decorators and mechanics and it's important to find one that you can relate to.

 

Third, I am concerned that you don't seem to be responding to the Remicade. If you are having flareups, your medication isn't working like it should - ideally, a disease modifying drug like Remicade, methotrexate, Enbrel, etc., should suppress your RA well enough that you no longer are flaring. It may be time to discuss medication options with your doctor to see if it's time to try something else. Keep in mind that you may not get back completely to the way you were before you got your disease, but the medications available now should enable you to lead a relatively normal life, including appropriate forms of exercise, working and laughing.

 

You are pretty new to this diagnosis and getting adjusted to living with a chronic illness can be very difficult. It sounds to me as if you may be depressed. Have you seen a counselor? Seeing a counselor is something I recommend to everyone who are new to the disease - they will be able to guide you through the grief and through to the other side, as well as teaching you coping mechanisms that you can use throughout your life. You may also ask your doctor for a referral to an occupational therapist, someone who can help you find various doodads and devices that will make your daily life easier. An occupational therapist may also be able to suggest ways of modifying the type of work you do, so you can get back to your job.

 

It is absolutely possible to live life to the fullest with this disease. Certain physical elements need to be addressed, such as the right medication, proper pain control, a healthy diet, the right kind of exercise, etc. - once your body is healthy and your pain is well-managed, it does wonders for your mood. However, much of living well with a chronic illness has to do with your psychological and emotional adjustment and this is where seeing a counselor, even for a few months, can do you a world of good. Regular meditation can also be a big help in the ongoing coping with the disease and this is why yoga and tai chi can be especially helpful, as they are also called "meditation in motion". I also suggest reading books about mindfulness, e.g., an audio program called Mindfulness for Beginners by Jon Kabat-Zinn (available at major bookstores and maybe also in your local library). Finding people who know what you're going through is also important and it's good to that you found us. I suggest that you read the SharePosts written by the experts and community members, ask questions in the Q&A section when you need to and maybe write a SharePost of your own. The site has a very active and supportive community and we are available to help you through this.

 

Hang in there. Life with RA can be challenging, but you can get to a point where you can focus on the life and not the RA.

 

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12/18/08 8:07pm

Take it into your own hands. I was diagnosed in 2004 and I exercise everyday.  I use and elliptical 3 days a week and lower body trainer 3 days a week.  I lift weights at a gym 3 days a week and do yoga  everyday.  When I go for a check up my dr is surprised that most of joints have inflamation but I don't hurt in most of them.  I atribute it to all  the exercise.  I never ask his opinion on what exercise I should do and he has never told me not to do what I do.  This is my disease, I will not let IT dictate what I can and cannot do with my life.  Sure I hurt, I hurt all the time, but if you let it get the best of you it will.  You need to take control of your of your life again.  Don' t go full hog but ease into it.  Just because we have this horrible disease doesn't mean we are cripled or on the verge of death.  Keep you chin up, and keep looking forward.  Good luck:)

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3/17/09 10:17am

Hi Jen,

I have done a couple of the things that Lene mentions.  I don't see a counselor regularly, but I have done so a couple of times when I needed to.  I use a recumbent bike.  I went to a gentle yoga program for a while - I think the instructor may have come up with the program himself, but it was called, "The Yoga of Letting Go".  It was all about GENTLE stretching combined with breathing.  What some medical people fear about yoga is the type that can actually pop out your joints - this happened to the person who drew my blood at my last blood test - she dislocated her shoulder. My yoga instructor even gave me a tape to use for when I couldn't get to class (free, even).  He's gone now, so I'm really glad for when I may want to do it again.  I did have to modify some of moves, because I can't be "down on all fours" with my hands flat on the ground  - one of my wrists doesn't bend.

     I just got a tape from the Arthritis Foundation called "Tai Chi for Arthritis".  It might be helpful to you as well.  You can view it and/or buy at www.taichiproductions.com, and see a demo lesson.  (The Arthritis Foundation charges less postage, however!  You can look at their website and find the nearest office to you.   www.arthritis.org

Tai chi is slow moves with total concentration and looks deceptively simple.  I find it calmly, relaxing and absorbing and it is helping both mind, body and spirit.  The instructor has arthritis himself (tho' I don't know if it's RA or OA) and designed this with arthritis in mind.  There is also an advanced level, and other varieties for people with osteoporosis or diabetes.  I find it is strengthening my body and getting me off the couch!   It makes me feel good to finally find some exercise that I can safely do, that uses the whole body, gently.

    I wish you well!

Ellen

 

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By Jen— Last Modified: 11/16/10, First Published: 12/18/08