Hi, I read so many posts here and feel that I need to do my part to encourage those new RA patients and those who still in great pain not to give up.
I was diagnosed with RA in end Jun 2014. I am now in remission. At the peak of my suffering 2 years ago, I could not walk normally because my ankles and knees would give way when I was on a very flat but a little uneven road. I could not sit on the floor and I could not squat down.
I could not change my own cloth because my hands were stiff and I was in great pain. I could not eat solid food because my jaws were in great pain when I talked and ate. I ate only soft food for about a year just to ensure I still survive.
I could not carry a cup of water, I could not make any drink for myself because my hands had no strength and in great pain. I could not open a door and I could not carry my bag. My daughter was with me for 10 months and she changed my clothes and put on my shoes for me.
I just came back yesterday from a local trip in another state. Look at me in purple, I can squat down on the slippery rock easily as normal without any fear. I climbed the hill and walked around the little waterfall happily with my girl friend.
The only thing that I did during the recovery process was to work very closely with my rheumathologist. She wanted me to take the medicines accordingly and to do a lot of low impact exercises daily.
I never fail to take my medicines. I exercise twice a day. At the early stage, I was in extreme pain but I continue the daily exercise. At first, I could only move my hands using a 2 1/2 feet long stick. My daughter sent me to walk in the garden nearby. I worked on my hands and legs using the equipment in the play ground.
I saw no result after months of painful exercises, but I did not give up. My physiotherapist told me that it took time to improve and it depended very much on how frequent I worked on it.
About six months later, I started to feel that my hands could move a bit higher with lesser pain. I was so happy and that encouraged me to work on them more often. About 10 months down the road, I could feel that my ankles and knees started to know how to balance themselves when I walked on an uneven road.
My physiotherapist always reminded me not to walk like a machine. I tried to turn my body so that I would move and walk normally like a human instead of like a machine but it was painful to do so. However, I made it after many months of painful trying.
I hope those in pain do not give up. You will be fine one day if you work closely with your rheumathologist and continue the painful exercises daily.
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Amy_Lee
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You look absolutely wonderful and so happy! Would you mind telling us what meds your doctor put you on? And are you still on them to stay in remission?
May I ask what kind of meds are u on ? I'm glad to feel better today..... I have had RA for 10 yrs now, been on Embrel for 9 and it worked great until I sit he'd to Humira 8 months ago and found out it never worked on me. Now I am sever pain but working thru it. Just started a new med Actemra and I hope it work and puts me back on track in remission. Keep the faith......
I was given methotrexate, prednisolone, folic acid, calcium carbonate, calcitriol to start with. About 3 months later, my doctor stopped the prednisolone because the methotrexate should start to work then. Now I am given methotrexate, arava, folic acid, calcium carbonate, osteocap and glocosamine & chondroitin.
Beside the above medication, I took fish oil and chia seeds for about 2 years. Recently I stopped fish oil because I developed many side effects of taking the fish oil. The side effects stop after I stopped taking the fish oil. I realize one cannot overdose fish oil and cannot take it for a long time.
I also stopped dairy products since 2 years ago. Occasionally I do just take a glass of milk. I hardly take red meat even before I was sick.
With my own experience, I believe RA patients can recover and lead a normal life again if we follow the medical proceeding closely. Also no harm trying the natural healing ways but do not cut your medication. I do take ginger and turmeric.
I agree with all your saying.... And I do take much of the same meds. It works for awhile, unfortunitly I'm past that and need stronger meds now. It's been 10 yrs I am dealing with this. Meds do work.... But u need to change ur whole life style to keep on top of it. Trust me !!!! Taking the bad with the good, today I feel much better. Thank god because I need to remove my pain suffering.... Enough ! Hoping this new med " Actemra" to really kick in 😃
I am very sorry to know that you are still in pain after that many years. Can you tell me more of what happen? I do come across others who said that they do not have flared up again after going into remission. I like to know more to get prepared for it, most importantly to avoid flare up again.
According to my doctors, she said that if one has RF -ve and CCP -ve, the chances of flare up will be very much lower. And it is very critical if he or she gets early and aggressive treatment to avoid joints damaged.
What can I say..... 10 yrs ago got bit by a tick. Got Lyme then 1 yr later came down with RA in my ankles and wrists. 9 yrs on Embrel which worked great !!! Then doc rush me on to Humira which for 6-8 months did not work at all. Paying the price now with total pain. Had my second Actemra injection and feeling better. Less pain..... Feel about 45% out of 100%.
Anyone ever hear about or try Turmeric or CBD ????
I read about that too online. Once I took turmeric daily. I stopped sometimes ago. I didn't find any difference hence I stopped. No harm trying though since it is just food.
I am very sorry to know that you are still in pain and you need the infusion. When you need to go for infusion, that means your RA has been very aggressive and damaged your joint. RA patients need to be treated at the very early stage to avoid any joint damaged. I was very lucky that I got the treatment at the very early stage. My RF and CCP were both negative.
It is very important that you have a very positive mindset to believe that you will live a normal life again one day and work on it. Most importantly is to work closely with your rheumotologist and continue your daily exercise. I have gone through the very tough time so I know it will work but you need to be patient and give yourself the time to recover. It will be painful but do not give up and continue to take your medication and exercise everyday.
Just get ready and go for it since it has been scheduled. I am sure your rheumatologist knows the best treatment for you. Infusion will take a while, therefore bring a book or something along with you during the process.
I was only on medical leave for a week during the peak of my suffering. I insisted to go back to office and walk up to 3rd floor very very slowly. Though my boss was very kind and wanted to put me at the ground floor, but I insisted not to be moved because I knew that I need a lot of walking and exercise to speed up the process. I took that as a good exercise opportunity.
As long as you follow your rheumatologist instruction closely and do not skip your medication, do your regular low impact exercise daily, you will be back to work as usual and will live a normal life later. Give yourself something and work on it.
Good luck and do update us your progress after your infusion.
You're starting in infusion so I'm assuming that she's been on other medications? What exactly is it infusion of one of the medications that you can otherwise take my pill or injection ?
At the earlier stage, I was given methotrexate and prednisolone for about half a year. Then I was told to slowly cut off the prednisolone. 3 months later, I was given methotrexate and arava until today.
My RF and CCP reading were both negative though I had all the other symptoms of RA and I great pain. I did not have the infusion certainly. However, I believe the rheumatologist knows best of what each individual patient needed, therefore just trust him or her for the treatment.
At the very beginning, I could only use a 2 1/2 feet long stick to swing my hands from side to side and back and front slowly. I had no strength to hold a cup of water. I also used thera band to increase my strength. You are right to say that as long as I could hold something, I did hold it while I exercise the joints of my elbows and shoulders. I also made used of any wall, pole and equipment around me to twist my body and push, pull and stretch my hands and legs. A lot of slow walking at the beginning and slowly increase the speed.
About 6 months after using the stick to move my hands up and down, back and front, I finally could feel that I could move my hands higher. I believe that was also because the methotrexate started to work well on me and the continuous exercise that kept my joints and muscles stronger.
After many months of walking, I also found that my ankles and knees started to learn to balance my body better hence I could walk faster with confident.
My doctor told me swimming, yoga and taichi are very good exercise for RA patients. I was already in great pain during the recovery process, I was not mobile hence it was not possible for me to go round looking for a swimming pool. I attended few years yoga classes before I was sick so yoga came into my mind easily. I used to go for yoga classes 3 to 4 times a week and went hiking during most of the weekend before I collapsed. Basically I was a very healthy person hence I am not sure why I could fall sick.
As and when I felt the improvement in my hands, legs and body, I always tested if I could do more aggressive exercise. It took about a year before I could get started with the simple yoga posts again. From there, I moved on to more and more yoga posts and I can do most of the basic posts today. Today, beside yoga, I also do pilate and aerobic exercises. However, walking help a lot during my recovery process, therefore do remember to walk around everyday.
May be I will write a post to share on the exercise process in more details in future.
We can certainly live a normal life again, trust me. However, you need to work very closely with your rheumatologist and continue your exercise daily. Anything around you can be your exercise tools. Like a wall, you can try to move your hands up and up slowly to the limit you can tolerate, then slowly go up again and you get closer to the wall to facilitate that. One day in future, your hands will be able to move up straight.
Thank you. It was indeed a very painful and difficult journey. Yes, I am in remission after about 2 year treatment. I hope I can continue the remission until the last day. I have continue my yoga exercise in the morning and work very closely with my rheumy. I do not want to go back to those painful day again.
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