Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and muscles... The symptoms that distinguish rheumatoid arthritis from other forms of arthritis are inflammation and soft-tissue swelling of many joints at the same time (polyarthritis). The joints are usually affected initially asymmetrically and then in a symmetrical fashion as the disease progresses. The pain generally improves with use of the affected joints, and there is...

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Will there always be pain?

Let me start by apologize for feeling sorry for myself and complaining.

I am having a big pity party right now. I know i could be worse. I still work full time even though it is getting so hard to continue to work outside the home but I don't have a choice right now. My job is based on how much I produce. I have to produce or I could lose my job. It's hard to type fast when you can't use your right hand. last week I had to type with my left hand only. I worry constantly if I can't keep up what will happen. The travel to work on the bus and subway alone takes it out of me so when I start I am worn out already. I am hoping and praying that I will able to work from home sometime in 2013!!
Will there always be pain? I have improved with Humira but not to the point were I can be like I used to before RA. I won't take prednisone anymore since I got off it 2 mths ago. I was in hosp for diabetic ketoacidosis so I will not go on it unless I can't move. I know if I was on the low dose it would help with the problems I am having now. My chiropractor said I have a trigger finger but it hasn't gotten stuck yet it just causes major pain in my right hand and that is the hand I use for everything.
I also developed contact dermatitis on my eyelids. It is possibly a side eff of Humira. I now have to use a strong steroid cream on my eyelids and it could take 3-6mths to get rid of it. I need to make sure the cream doesn't cause damage to my skin. There is always something happening. Does it ever stop? I am so tired of not feeling good. I am only 46. I am tired of feeling sorry for myself also. I get so sad when I see people my age or older running circles around me or I have to have someone open bottles for me. I tried for 15mins to get a lid open and cried the whole time but I did get it open.
I know I could have it worse. I can walk, get up off the couch by myself and still work. I am so tired of pain. I will only take Tramadol for pain. I don't want anything stronger plus my Rheumy is not big on giving pain pills. I am trying to be thankful for what I can do but it doesn't last long. i do see a therapist for this and other issues.
I was able to help my mom with thanksgiving but when I sat down for a few minutes I stiffen up quickly and the pain increases.
I need help accepting this disease and my limitations. My mom is so much worse them me. she didn't have the meds when she got RA. I should feel blessed for the option I have now.
I really need uplifted. My husband is not the uplifting type and I have 3 sons and 2 stepsons that don't know how to be uplifting. They don't understand what it is like being limited. I am sorry for complaining so much. I am sure there are many of you worse than I am. How do you keep your spirits up? How do you deal with pain when you have to go to work or participate in holidays with the family when all you want to do is lay down and either watch TV or sleep. Does anyone feel like I do? How do you deal with this disease? I hate it!!!
Thanks so much!!
Jan

Replies

deleted_user
deleted_user

Hi, Janee65, I am new to all of this so I am not sure how much help I can be. I feel the same as you and wondered the same thing--"would I always be in pain?" so I have spent a lot of time on DS reading new and old post for answers and it seems that the short answer is yes, some days not as much as others. I have been in constant discomfort since August of this year. I feel the way you feel, it is tough. I am coming to the realization that the old me is gone and now I am adjusting to the new me. Where the old me could push myself to do more--now when I do that I end up in the bed all day the next day feeling like crap so I have to realize how far I can push myself. It is discussing with my family as much as I can because I have younger kids--a 9 yo and 14yo. So I completely understand how you feel.
Carol
bcatz
bcatz

I recommend taping the trigger finger to the one next to it each night. Well, I'm assuming you wake with it bent and stuck down for a while til it releases after you have been up in the morning. That's what mine does. I tape my ring finger to the middle each night and when I wake, it's straight. It's only a tiny bit stiff but that goes away quickly. Also, I take an NSaid at night instead of each morning. It lets me wake feeling good instead of waiting for it to kick in mid morning.

You might be able to get some hand PT, but I don't know. Best wishes!
deleted_user
deleted_user

Thanks for your comments.
carol I don't know how you do it with 9 and 14 yr old. My youngest is 17. I guess I don't want to give up on the old me. I was a strong person and very independent. I have other health issue too that don't help my situation. I have some good days some ok days and some really bad days. I just wish the good days would be more often. Thanks you helped just by understanding.

Jen I can look into the software for home but could not use it for work. They have to approve everything and to be eligible I would have to completely disabled with my hands. I am not It just really hard to go at a fast pace all day.

bcatz. my finger doesn't get stuck that's why I wasn't sure that is what I have but that is what my chiropractor says. I get intense pain in the middle of my palm and it wraps around my thumb. I cant squeeze anything and you can see the swollen ligament or tendon that runs thru the middle my palm. My chiropractor used heat on it and showed me stretches. That is helping.
Thanks alot
deleted_user
deleted_user

It is so hard to be working and feeling that pressure. I've been able to do much of my work from home, but don't know how long that can continue. It has been a blessing! Just not having to dress, do hair and make-up and make the commute helps so much. I hope working from home is in the near future for you.

You say you only want tramadol for pain, but chronic pain becomes it's own disease. Our brains and bodies "learn" to produce it constantly and it takes so much out of you! I wanted to decrease the narcotic I use (Norco) and discussed this w my PCP. I am now using a small dose of Celexa in the day and Flexiril at bedtime. Both have helped tremendously with pain. Getting some effective pain relief has been good for my body and my emotions. I really encourage you to look into pain management options. It can really change your energy and outlook to not be hurting ALL the time!

I am hoping for something that brightens the picture for you soon.
deleted_user
deleted_user

Good morning Jan, I read your post and was filled with thoughts of my own pain. I am so sorry for the pain and feelings of lost hope you are having. I also have been wondering if pain is now a way of life for all who have RA, I used to believe that when ever my Rheumy for the right meds for me I would be almost normal again, but now am begining to realize that this is not the case. I now think people with RA are a special select group of people that go through life in pain and your quality of life depends on how well your mind deals with this pain, and how supportive the people around you are. I am grateful for God giving doctors the knowledge to develope the treatments we now have to help us with this monster on our backs as much as he has, God Bless you Jan, you are a strong person, and I hope you find a way to work from home soon.
deleted_user
deleted_user

Good morning Jan, I read your post and was filled with thoughts of my own pain. I am so sorry for the pain and feelings of lost hope you are having. I also have been wondering if pain is now a way of life for all who have RA, I used to believe that when ever my Rheumy for the right meds for me I would be almost normal again, but now am begining to realize that this is not the case. I now think people with RA are a special select group of people that go through life in pain and your quality of life depends on how well your mind deals with this pain, and how supportive the people around you are. I am grateful for God giving doctors the knowledge to develope the treatments we now have to help us with this monster on our backs as much as he has, God Bless you Jan, you are a strong person, and I hope you find a way to work from home soon.
deleted_user
deleted_user

Jan I forgot to tell you about a book my rhumey loaned me, I just started reading it, its called " A Resilient Life" Learning to thrive , not just survive, with rheumatoid arthritis, written by Kat Elton, OTR. I just started reading it, I believe it will help me get a better perspective on this , it might also help you . I ordered me a book of my own yesterday for amazon .com just to have to read slowly so I can give this one I have back to my rheumy.the book is written by a woman who has had RA since the age of 2,
deleted_user
deleted_user

Thanks everyone! The encouragement means so much. I live with all men who don't know how to be uplifting. They are great in other ways.
I Cant take flexril. Took it a few yrs ago and it is way too strong. I was taking Soma a few yrs ago. When it comes to pain management I need something that will let me work. Not being on prednisone has really made a difference in my pain. I am so tempted to go back on it but it will really mess up the diabetes.

I am really trying to keep my head up but it is getting harder every day. I do have so many good things in my life.
My kids are healthy, I have a wonderful granddaughter and I have a home. My bills are paid with not much left but their paid. I have a job and so does my husband. I have 2 cats that give me so much joy and a grand-dog. I have a good family. I am 2.5 yrs with NO re-occurrence of cancer. Only 2.5 more yrs to be cancer free. I can still do even though it is hard and painful. This is so much to be thankful for!!!

RAworried I will look into that book. Would they have it at the library? Thanks so much everyone!
Dreamchaser-Linda
Dreamchaser-Linda

After 6 years of RA, I do still have pain. It's just more manageable now with the right med. Orencia, and for pain I only like Etodolac. It's a time released pain med, similar to celebrix, but with less side effects. I still have good days and bad, but in time you will learn how to push through the pain. The stiffness won't last as long, but you will always have it, especially in the mornings and when you sit. But you can work the stiffness out as the day goes on.
I wear a brace on my hand at night, it really helps. It's a carpal tunnel wrist brace I got on amazon. In extreme pain on my hand, I use voltaren gel, under the brace. It really helps.
All these your rheumy will give you.
The pain gets better, just got to find the right RA medicine. Also I notice diet also helps, I try to eat less red meat, and sugar. And swimming helps my stiffness.
The more active I am, with resting in-between, I feel better. When I don't move or lay around, the pain is worse.

Hug
Lin
deleted_user
deleted_user

jan you can call the library, they may have it, I wanted to own it so I can go back to it for refrence
lynnedavidson3
lynnedavidson3

I don't know if there will always be pain. I use my hands a lot at work, and just a couple of weeks ago, I was working away and realized my hands hurt, but I was used to my hands feeling like this. This may sound weird, but I was really happy. You have a lot on your plate, five kids and a job! A healthy person would run out of energy with all you do!
tycamisaiah3
tycamisaiah3

I am so sorry for your pain and frustration. I also have a full time job, a husband and three kids ages 6, 11 and 13. I have the sweetest husband and there is nothing he wont do for me but he does not know how to comfort or support me with this disease. I can explain to him how I am feeling during a flare and either he says very little or nothing. I am currently waiting for test results for Lupus. I have tested positive but it may be a false positive, I'm praying that's the case. I also feel alone and isolated because no one understands what I am going through. I have basically stopped complaining to others and have started doing a lot of praying and talking to God. He seems to be the only one I can talk to without feeling as if I am being judged.
I have had RA for about four years but was in denial of my limitations until recently. I am beginning to realize that this is my life now...living with RA. I am not able to fully function as the active person I once was. Instead of trying to do everything such as work, take care of my family, leisure activities and etc. I just do what is necessary and what I feel like doing, except for work. Unfortunately, I have to work. I try not to over exert myself because it brings on severe fatigue and I have to stay in bed for days to recover. When I am feeling depressed, on a pity party or just not having a good day. I turn to this amazing support group! I draw strength from each and every one of you because I know you understand what I am going through and how I feel. I hope that you start feeling better soon!
ILoveHuskies
ILoveHuskies

Has your doctor ever suggested a cortisone shot in the hand joint. Shots in the hand don't seem to hurt as bad as the bigger joints. It might bring the inflammation down enough to type.
deleted_user
deleted_user

thanks everyone!! You are great!! It has helped just reading your post. I give everyone with RA who has little kids a great deal of respect. My youngest is 17. The other 4 rage from 31 to 25. The 25 and 30 yr old are still at home but at least I don't have to take care of them. My 17 yr old works now and drives. That has made it easier on me. He is involved in a lot of activities and I don't have to drive him everywhere now. When I don't feel good I tell them they are on their own for dinner. If I can't wash clothes my 17yr old will do mine but I do have to ask.
I too will be typing and I know it hurts but I am getting use to a certain amt of pain but when it gets extreme it gets hard
I don't complain too much with my family anymore. My mom has RA and she has twisted joints and is disabled. I will talk to her but when I have problems she cries and I don't want her to be sad. She has tried to help me with my faith but it hasn't worked. I won't give up. I will keep trying and keep praying.
Thanks everyone!

Jan
deleted_user
deleted_user

Ilovehuskies. I haven't seen my Rheumy since this started. I am due to see him in a few wks so I will ask him. He gave me a shot in my elbow last time cause I had fluid build up the size of a golf ball. He wants me back on low dose prednisone but I refused. It will mess with my diabetes so I may get relief but it will cause other problems. Its not worth it. thanks.