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anyone else think RA sucks?
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NinaDavis02 posted:
I am grateful to find a support group for those of us living with RA. Simply said to me RA sucks. I try not to have a pity party for myself...after all it is only mild RA.... It has been three years since my Diagnosis and each day a little more depressing than the next. I hate to look at my toes anymore. Watching my once healthy active body change shape before my eyes...again depressing. I take methotrexate by injection and it works great so I have much to be thankful for I just don't want to have RA...or put such a burden on my family when I have bad days...for those of you who have had it longer than me how do you cope? Is my future really crippled toes and fingers with intermittent low grade fevers and general feel like crap...is there anything I can do? as an aside i already take an antidepressant......
thanks for listening....sigh..
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DIYSTER responded:
Been a while since I've been on this board...saw your note and have to agree. It is pretty awful. I was DX'd in 2009 with severe RA. Long story short...thought I might be Celiac, asked for the test and lo and behold, I was. Went gluten-free and I no longer take Humira or Prednisone nor do I have any of the typical RA symptoms now. I have ugly feet, knees, fingers, wrists, etc and that's permanent damage unfortunately. Also have permanent damage to the lacrimal glands (secondary Sjogren's) so I still take Evoxac. But I wish that, like other countries, the US tested for Celiac. I probably never would have ended up like this. If you are interested, there is a blood test for Celiac. Hang in there! Just enjoy the good days and when the bad days come (I've had tons of 'em), just think "this too shall pass." Good luck!
 
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MissyMB responded:
Ask your doctor about getting into clinical trial. You may be able to get better meds if you qualify as well get them for free. Some studies even pay you for your time.
If that is not an option, cortizone injections can also reduce swelling, promote healing and return flexibility to damaged joints. I understand your frustration. I watch similar symptoms in my husband and wish there was something that would magically cure him. Meanwhile, I do everything I can to support him however he needs it. I am sure your family does the same for you and understands and doesn't feel burdened. Keep your chin up. There is hope.
 
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An_240301 responded:
I do not have RA, but I am under the same treatment as RA. I take methotrexate by inj., Humira, mobic, vit d, folic acid, and reflex med. I am sorry to say that I have not figured out how to cope other than to take it one day at a time. I am only 35, but feel alot older. If I call in everytime I had a fever, I would not have a job or be able to pay my bills. I am also a single mother of 2 young boys too. It is a hard life, but focusing on the important things that I can control helps. I wish I had the magic answer.
 
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endersgame replied to An_240301's response:
for pain releif and an over all better outlook and feeling try marijuana. I was taking 60 vicoden a month with little relief after a few years, I was concerned with it not really being liver friendly with the NSAIDS. Some one told me that marijuana works for pain relief. I looked into it and decided to try marijuana, I have now been vicodene free for over a year. I still have pain but I deal with it better, I do not have the anger or the nodding off that I use to get with the vicoden. I can actually go to a movie and not fall asleep as would when I was on the pain meds. Only issue is that the goernment in the state I live in continues to make it illegal
 
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JOHNINAZLETEXAS responded:
NINA,
I HAND RHEUMATIC FEVER AT AGE 4. THIS WAS ACCOMPANIED BY A MAJOR CORONARY. MY PARENTS WERE INFORMED THAT AS A RESULT I WOULD, AND HAVE HAD RA FOR THE REST OF MY LIFE. THE FEVER ATTACKS STOPPED AS I GOT OLDER, BUT THE OTHER DEBILITATING AFFECTS ONLY GOT WORSE. 30 YEARS AGO I SUFFERED A GUNSHOT WOUND TO MY LEFT ARM. I'M RIGHT HANDED. I WAS TOLD BY MY DOCTOR I WOULD HAVE PAIN THE REST OF MY LIFE, SO I SHOULD LEARN TO LIVE WITH IT. THAT WAS THEN, AND I HAVE. THE ONLY DRAWBACK IS MY RIGHT HAND BEGAN TO TAKE OVER FOR MY LEFT. BAN MOVE. I TAKE PAINKILLERS AND YET EVERY KEYSTROKE OF THIS IS PAINFUL. YET, I AM THANKFUL THAT I CAN EXPERIENCE THIS PAIN, AS I HAVE A DEAR FRIEND WHO LOST HIS HANDS IN AN ACCIDENT. I HAVE WORKED FOR HIM FOR 8 YEARS NOW DOING "WHAT HE NEEDS HANDS TO DO"
HOW DO I COPE? I LOOK AT OTHERS THAT HAVE MORE PROBLEMS THAN I DO, YET THEY CONTINUE. NO, IT DOESN'T RELIEVE THE PAIN AND IT DOESN'T CHANGE MY FUTURE, BUT I MAKES IT WORTH IT TO KNOW THAT AS BAD OFF AS I AM I CAN STILL HELP SOMEONE.
YES, IT'S DEPRESSING TO KNOW I WILL ONLY GET WORSE. AND AS I HAVE NO INSURANCE, I WILL HAVE TO COPE MORE AND MORE. AS FAR AS FEVERS AND FEELING LIKE CRAP. WHAT CAN I SAY. WITH DEPRESSION AND COPD THROWN IN, YOUR RIGHT, LIFE AND THE FUTURE SUCKS. THE ONLY ADVICE I CAN GIVE IS TO LOOK AROUND YOU AND SEE IF YOU CAN'T FIND SOMEONE ELSE WORSE OFF. THINK ABOUT WHAT THEY GO THROUGH AND SEE IF THAT DOESN'T HELP. IF NOT THEN PRAY AND GOD WILL SHOW YOU HOW TO COPE. I KNOW AT TIMES HE HAS BEEN MY ONLY BRIGHT SPOT.
ANYWAY, I DIDN'T MEAN TO RAMBLE SO MUCH, BUT I HOPE I'VE HELPED SOME.AND I WILL ALWAYS LISTEN.
MY PRAYERS ARE WITH YOU,
JOHN
 
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burnchic replied to DIYSTER's response:
I was diagnosed 2009 and am still trying to find a doctor that will listen to ME. Thanks for the information on Celiac test, will try that and see how I feel. I have found that when I feel down and no energy, I have a cranberry energy juice for breakfast and have some energy to do things. I am an artist and as of yet still have full function of my hands, the juice really helps me. I am new at this and want to thank you for your information, I have no SUPPORT at home, so I am on my own, trying to get help when I need it. THANKS Burnchic
 
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PstrJimR responded:
NinaDavis2, 20 years diagnosis RA called . I take methotrexate, and several others. Not much works for me, but I trust God to take care of troubles and get me thru the day. For most it is a short term thing. Keep your chin up, as there are many of us with this problem. Take one day at a time. Don't worry about tomorrow. Just decide you are going to have a good day.
 
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siobhain37 responded:
I started taking Beline three weeks ago and cannot believe the ddifference. It was like having a new body, pain gone, able to sleep at night lift things walk up and down stairs without thinking about it, absolutely fantastic. They are herbal and the only thing I,m afraid about is that they work so well the big drug companies will interfere and try and take them off the market.
After being almost totally crippled, I could run I can dance and I can even walk.
Siobhain.
 
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pammy1955 replied to siobhain37's response:
What is Beline? I am interested in any thing that might work. I have had RA since 2008 and so far any thing they have had me on is not working. I am always in pain and the swelling in my fingers and ankles and feet are awful.
 
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jeg1234 replied to siobhain37's response:
Dear Siobhain,

I experienced the same, as has my mother. My consultant wanted me to have steroiod injections directly into my joints. I find it amazing that there are such small quantities of things found in this product all of which is available over the counter in even larger quantities. I do hope that Beline manage to overcome this red tape and the large companies drug companies do not get this product banned because it's made such a huge difference to my life, I no longer feel disabled. I now have to order this to be delivered to relatives in spain who then post on to me in the UK. Hope they get them correctly labelled to meet legislation so more people can benefit.
JG
 
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siobhain37 replied to jeg1234's response:
Now on injections for RA though when the pain gets out of control the only thing that helps is still Beline. Unfortunately they are not cheap and with the other medication I need are sometimes too expensive. TG for credit cards. Disease is still very aggressive and have it in every joint and bone in my body and the only thing that has provided some relief has been Beline and one massive steroid injection (gave me two weeks pain free - bliss)
 
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Elliesgrama1 responded:
I turned 59 in February and was diagnosed with severe RA in my neck and spine several years ago. Granted, the quality of life has flown south. I had NO idea that arthritis could be so painful. A couple of months ago I had new x-rays taken and, sure enough, the problem has progressed to the point where my I am almost thankful I don't own a gun! I have NO health insurance (I am an American) and I was getting some help from some chiropractors who were injecting Lidocaine into my neckin 3 different places and putting on compresses. When they told me I needed to come in 3 times a week for a total of $3,000 I ran. I believe I was actually getting some relief, but I don't have that kind of money! Today I babysat my 1 year-old granddaughter and I had to call my daughter to ask her to come and get Ellie because I could not handle the pain. What kind of life is this? My posterity are the ONLY good things I have in my life! Talk about being on a pity pot! My (soon to be ex) husband has no empathy whatsoever for my situation. If only he felt my pain for even one minute....he would be in dire straits, the big baby. I have gone to a rheumatologist for this and he was no help at all. Now I am leaning on my children's father to give me pain pills because I HAVE no other choice. I have a jetted tub, but that is a band-aid. I have tried every home therapy none to God and man. If anyone has any suggestions, feel free to enlighten me because I am wits end!
 
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Painfullife1 responded:
I was diagnosed with the dreaded RA several years ago. I have jumped through hoops such as visiting a rheumatologist to no avail. I am now going through Lidocaine injections 3 times a week. Nothing worse, trust me! I have resolved myself to the fact that I will never get 'normal' again. I am NO medical insurance and these visits cost $60 a pop. Screw that although I felt as if I was actually make some progress. And yes, you are correct about RA sucking. My quality of life has flown south and I am only 59. I have a 1 year-old granddaughter who I cannot babysit at various time because of this crap! It is just wrong! I a feel as if being held a hostage in my own body. Thank God I don't own a gun...there have been days where I thought about offing myself because of the severe pain. My posterity is the only reason I stay alive. Yeah...RA blows!
 
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xperky replied to Elliesgrama1's response:
Have you ever been prescribed low-dose prednisone? You shouldn't be in so much pain that you feel suicidal. It's a horrible place to be in. You have my sympathy.


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