Hi, I am 34 yo I have had JIA since I was 18 months old. I have always managed to live and work ok but recently Arthur seems to have changed his method of attack and I have been struggling. I have been so tired after work that I don't move from the couch. I have been gaining weight steadily over the past 2 years and I need to start fighting back. My energy is so low that I know I would never make it to a gym, with the weather turning now too outside walks etc are not ideal (I live in Scotland). So far I have managed to avoid any joint replacements but i know that they are in my future (hopefully not too near) and weak muscles and excess weight will not help matters.
Does anyone use a Wii fit plus or similar system? Is it worth the money? I know it won't train me for the olympics but will it help me loose weight and gain muscle strength?
Obviously I am looking at my diet as well.
I would love some opinions from people in similar situations to me.
I can relate to your problem; I was diagnosed with JRA at age 12 and lived my life until about 34 not feeling much symptoms, even though my first orthopedic serious surgery took place at age 24 and till now... no end. ;-)
At about 35 it hit me hard too. Yet, I was able to fight back; I was in a gym at least 5 days a week, and when I got into it, I couldn't live without it. I still remember excellent feeling of strength came from somewhere after I was done every time, giving me energy, and keep me very fit.
I strongly recommend yoga; yoga for our condition is the thing to do. Trust me on this. I wouldn't give up yoga for anything. Despite tons of drugs muscle relaxers included (they make muscles very weak), despite for severely damaged spine after failed spinal fusions, and so much more, yoga keeps my muscles strong, give me strength and makes me feel good physically and mentally. I promise you will feel the same.
My kids use Wii for about 2 years now. I tried many times to play with them; I think this is an excellent alternative to very mild exercise (for adults it mild, for kids is pretty strenuous). I am talking from my point of view, I still keep my body in pretty good shape. But if you cant do much or can't push yourself to go to the gym, than i will definitely recommend Wii to you. Take it easy in the beginning though. When I done it first time, I was in pain all night, not kidding. Do it slowly, change activities every day and it will help you to keep your body going. I believe you will not regret investing in Wii.
Plus, it a lot of fun; you can do it with kids, with your friends, spouse, etc. We all love it, we really do.
Hope this helps, feel better!
The Following User Says Thank You to Moldova For This Useful Post: thistlegirl (10-01-2012)
I have thought about Yoga often but I have never made the step to find a proper class for people with restricted mobility etc. The couple of of classes I have tried I felt I couldn't do so many moves and didn't like asking the teacher for special instruction . It is well known that teachers make the worst students!
After I finish surfing this forum I promise to search for a possible class in my area, as well as find a good deal in a Wii system.....Hmm shopping!!!
At the moment I just need to get off the couch, I use up so much of my energy at work I am even having to get my meals cooked for me (I have got a great Mum). I completely seized up for the first time a year ago, I needed to be hospitalized because I was so immobile for the first time ever I could not look after myself. It took a lot of steroid joint injections and a change of treatments to get me moving again but I have not been the same since.
I am aware that there is a vicious cycle of getting energy by being active but not having energy to be active....and if I don't get moving soon things will only get tougher.
I am about to move from Infliximab (Remicade) to Abatacept (Orencia?) hoping for some improvements but I know I could be worse for a while until the new drug kicks in. I got 3 good years out of Infliximab and that is the longest time by far that I have lasted on a drug without side effects forcing me to stop, have you tried Abatacept?
I am glad you thinking of doing something active, you can trust me on this, you will be really happy and your body will be happy as well.
I have not only JRA, I have Lupus and MS, and also damaged spine due to failed spinal fusions and as a result Arachnoidities. I tell you this only for you know that I know what pain and luck or energy is. In my worst times, I still wake up and do stretches, walk around the house 10 min here, 20 min there and than I am back to bed. On better days, I go to do yoga, I try to walk around the house as slowly as can be (I also have dropped foot due complications). My RA Dr insists on moving, she said gaining weight and luck of activity, this what kills people with health issues, not the disease itself.
When I was healthy I did very advanced yoga; after I got ill, I told my teacher about all my problems and restrictions. Good and knowledgeable yoga teacher knows all about spinal damages and other restrictions and suggests herself what you can do.
During class, she tells everyone what poses we shell do and if this is not for me, she always say: Moldova, not you. There are plenty of healthy and reasonable poses, stretches we all can do. Just look for someone with good experience.
All my life i was wondering how my poor mom moves at all, how she gets up every single morning (now she is 75) and cooks, goes to work, does heavy dirty house work, takes care of dad and 3 kids. She has the worst case of OA, it started for he at age16, by 30 her spine was completely affected by OA, she never can bend, all spinal nerves compressed; scans show "bone on bone" on every joint of her body. Moving was bringing her a great deal of pain, but boy did she move!
I asked her once how can she do what she does with no time in bed during the day? She said if she wouldn't push herself every day to do what she does, she would be long time ago bed ridden. All her doctors was wondering knowing how bad she is, they didn't believe that she is capable of doing all this every day work. I took it from her, I know how good this for everyone and don't look for excuses for myself, just push and go...
My PM told me once that this is a miracle I am don't need anti depressants. Many of his patients who have lesser health issues than I do, they all on anti-depressants. What is my secret?
I told him first of all, my family and friends; their support is priceless. Than, I don't have time to get depressed, I do what I can and get on that couch only when my pain over 7. And even if I am in bed, I read. So as you see sweet heart, you still can do a lot to make your life quality better.
I am on Orencia shots every week. I had many different infusions with biologics, shots, pills, steroids, but unfortunately no remission for me. Only once I was lucky for a very short time; right now I was told by my DR nothing can be done for me RA wise. I asked if I can try Orencia shots (they didn't have them when I had Orencia fusion) - what if? No miracle for me so far, but maybe one day they will find the way to help those with advanced cases of RA.
I developed JRA at the age of 10 and I'm now 56. I had very good results with Remicade for a number of years, when it stopped working for me I tried Orencia for a year and never got the same kind of positive results. Went to Actemra after that, apparently it works well for JRA specifically and did well for me. I have been off of it since January due to some major surgeries, but look forward to getting back on it.
my story is the same. I was on Remicade for over 3 years.
It is the longest time by a long shot that I have managed to stay on a treatment,all other treatments either didn't work or I never even had time to find out if the would as my body seems to read the possible side effects paperwork and chose those the interesting ones. Normally liver, stomach or headaches.
For some unknown reason I was moved onto adalimumab (humira) after a horrendous year involving 6 months off work and 4 weeks in hospital they decided it wasn't working.
I was put back in Remicade and within 2 hours I went from seized knees that couldn't straighten to walking across the ward without crutches. Yay but...
A year after restarting, even though I am getting an infusion every 5 weeks I am now where near as good as the first time round on the drug and only 3 out of the 5 weeks are ok the rest I am counting down the days.
I am very worried about trying Orencia only because of the 6 months to a year that I will need to give it to see if it going to work. I have been medicated pretty much most of my life and it was only last year when the Humira failed to work that I felt/experienced how aggressive my Arthur has become. Fingers crossed it works.
Luckily there seams to be more treatments on the way!
I looked up Actemra on your post I will add it to my research pile and ask the docs when I see them on Halloween, they do seem very interested in my blood.......
The following user gives a hug of support to thistlegirl: achyFL (10-05-2012)
I am sorry, but who told you it will take 6-12 month to see results from Orencia? This is absolutely wrong!!!
If you on Orencia shots (which is new now) you will see results no more than in 3-4 weeks. I have very advanced RA with a lot of damages and this is only one drug out of all of them, all biologics included, which shows any difference for me. I am on treatments for 6 years and this only drug put me in remission for good 8 month when I was on Orencia infusions.
You dont have to see results in a year, this would be useless drug; who wants to be on such dangerous treatments and not see results for such a long time.
You know, I wish I wouldn't be on any of these type drugs, I know what they can do to us; I had terrible, near death experience when I had my first treatment of Rituxan. Thank God I was in great hospital and they were fully prepared to save me. And yet, I am still trying even after my RA and second opinion RA told me that nothing really available for me so far; we tried them all...