dEAR FOLKS, I don't usually use that word but in this case it applies!
I feel so badly that people are in pain.....I know how it is. YOu can't function, you can't think, it affects your brain, you whole life.
Honestly, why does this RA hurt like nothing else? What is is about 'the immune system' going crazy that causes this intense pain? Not tht people don't treat themselve, 'take it easy', not over do, etc. We all do the best we can, be no matter the pain and suffering is there. It affects our brains (I know because when I was in my worst place, wow I couldn't think), my husband sat by my bed and cried with me! He felt so bad he couldn't function either. I don't understand this deep intense pain. (I had heart surgery and the inside of my body was screaming with pain, but I could take oxycodone and stop the pain and sleep, but when the RA flared like nothing I'd ever had before NOTHING helped but prednisone, mtx and remicade, but it took so long...2 months between december and March before the pain stopped!
There needs to be more research about this pain, get us meds that work, and work fast! People do not need to suffer.
I'm so sorry for those on the Forum with pain, I hope you can get help.
(My grandmother suffered before these super meds, she groaned with pain when my father would move her in the bed. She was in a 'care center', and as my father said, "She never complained", but I know it broke his heart to have to leave her there. He wanted to bring her home, but I can't remember why he couldn't. )
sincerely, sarah
Hurts, it helps if you can break down your pain in segments. I do different things for whichever part is hurting me. What is causing you the most pain? It is amazing how much different kinds of pains one body can come up with. But for everything, there are solutions. With the overall pain you are having now, to the point of you crying, that needs to be addressed. What hurts the most? When does it start hurting? Does anything relieve it even for a short period? Maybe if you post that, we can come up with some ideas of how to help you or what to ask your doctor for.It is awful to be in pain. If you haven't experienced it you can't offer any advice at all. The worst thing is the thought that it won't end. When I had my daughter I thought childbirth was the worst you could get but at least I knew it would end at some time and there would be a wonderful thing at the end of it! With RA however, you don't know if there will be an end to it. What you have to do is remain positive. I look at all the things around me and realise how lucky I am. My father died of lung cancer last year and just watching him deteriorate was just awful. I would rather have RA than cancer any day. Obviously that doesn't make me or you feel any better when the pain gets really bad but it is something to hang on to.
Wishing you well
Sally
I feel your pain, Sarah..... I ran out of vicodin Friday and I am still trying to get a refill. I have been on the same dose for 2 years now and I keep telling them it doesn't work. They want to cut me back to one 750mg in the morning and one in the evening. They don't understand!
I had a golf ball sized cyst removed from my tailbone and have been off Humira since Jan.5th. Surgery was Feb. 1st and I had my first humira inj. last Monday and I hurt like a B!! I take 3 maybe 4 vicodin a day and I am treated like a junkie. I told Dr. I have never had knee problem....guess what.....my freakin' knees are huge and I can press my finger in them and make an indent.!!!
All I can say, Sarah, is you are not alone. I'll hang in there, if you do
PAIN & RA DO SUCK! Pain. This word has been in my daily vocabulary for several years now. I've been on pred and a medrol pack, neither worked. Maybe the dosage wasn't high enough. I've been afraid to take high dosages of prednisone. Maybe if I took it in large dosages it would work. Maybe vanity is still ruling over pain. I've gained weight over the last year but I'm afraid on prednisone that I would balloon. Sometimes I just "lose it" with the pain and swallow 4 or 5 ibuprofen at once, but I'm afraid to do that very often. Nsaids don't work for me. Usually by late afternoon I'm hurting from my neck down to my feet and I'm pretty much immobilized, and I feel alone. I can't talk to my husband about it because he doesn't want to hear about this everyday. I'm starting Remicade on Wednesday. I'm praying to God that this will work.
Yes, the pain really does suck. We are in so much pain because of the inflammation that we can not get under control. And if you are flaring or are out of control it certainly can make your entire body ache and be in pain. Hot baths, alternating heat/cold on the parts you can do that on (I was doing that to my feet last night), using just heat or just cold on parts, RESTING (something we all say we are going to do but never seem to get around to it), taking any and all medications (including pain killers) as scheduled and as closely on time as you can. Miles dahlin...you have us to vent to and our shoulders to cry on. I'm around all the dang time. I don't work outside the house and take frequent housework breaks and check the boards. Thanks grammaskittles. I think it really helps to be able to come here and know that everyone understands. I was thinking about how much I enjoy my hot baths and how GUILTY I use to feel about taking them! Until recently that is. This forum validated me! It's funny, I raised 5 kids, worked off and on part-time, did the whole sports-running around back and forth thing with soccer,baseball, football,etc. for years and years but I couldn't take a bath in the middle of the day without feeling guilty! Right now I'd say a hot bath is the single fastest working pain reliever for me. We all should be given the option to have adequate pain control and not be made to feel like a criminal. I have had many surgeries in my life related to infertility including a hysterectomy and none of them comes close to this pain. Part of it is the 24/7 aspect of the pain and though I am blessed with pain meds they only cut the edge. I am so sorry that we all must suffer so much. I remembered 20years ago, I was bedridden for at least 1.5 months in each flare. The acute attack from one joint could quickly spread to multi joints of both legs and on set to usually right shoulder joints and chest. Super drugs and costicosteriod once were effective could not touch the pain any more. TOTALLY HELPLESS!!!!!! Nobody could help but just stayed motionless and endured suffering and excruciating pain especially in late night to early hours in the morning. I could only look out of the windows to stare at the stars from the bed. Sometime the muscles could cause spasm or the large tigh vein was pulling hard that sent the sharp pain to the heart and brain. All the sufferings I had to keep it quitely. I had one big jar of drinking water beside my bed as I drank alot during the early hours in the morning. Going to the attached bedroom toilet was such a great problem. To move the upper body slowly in a sitting position because any slight movement of limb could trigger much pain. From bed to level armless roller chair, I used my hands on bed to lift my back slowly to sit on the chair. Both limbs could not touch the ground so I used my hands to move the chair slowly to the toilet. In the toilet I had to hold on the steel rail throwing all my body weight so that I could gradually stand up touching the ground lightly with my feet. To get undress I had to use one hand as another held tightly on the rail. It took sometime to slowly drop the pant down because any slight clothing touched the joints could send a sharp pain. Life was meaningless to go thru' such rountine. I had caused my family sleepless nights, stress and had to seek help sometimes. I prayed for understanding as I could do nothing to stop all those problems. There was a turning point when I explored, found and use the wild lingzhi to address the pain and the disease. I must credit many good people who wrote natural foods to treat diseases. I am very pleased to hold strong belief in herbs and natural foods and my determination and positive attitude to pursue regardless of outcome then. It was a life saver to make lifestyle changes. Today I am free from meds & disease. Don't brook and lament, the decision is yours. If you follow the right track you are right, otherwise you will be left. In a layman term - to suffer or not, to nuture back to healthy level or deteriorate, to get well or not. Only you have a power to move your world.
It is soooooooo wrong that people of RA must suffer with pain because the doctors aren't prescribing meds that will take it away!! RA sufferers deal with chronic pain as opposed to the pain people experience with an imminent life-threatening condition, such as cancer. It seems soooo wrong that RA sufferers must endure the pain until the doctors through trial and error come up with a drug cocktail that takes away the pain and allows RA sufferers to function.
For sure if the doctors had to endure the pain that RA sufferers do there would be solutions coming "immediately if not sooner!" I've often wondered what meds the doctors take who suffer with RA and if they can still function effectively? Bet there aren't any studies on this one.
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