I need help!

By Gloria Monday, January 12, 2009

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Okay I am new to this site, I have been told by my doctors to try to find a support group that can help me deal with the RA. I am at my wits end. I can barely walk, there seems to be no "flares" for me but a constant situation of almost unbearable pain. I work full time as an insurance agent so I am in and out of the car daily, walking on all sorts of terrain. Sometimes even with my cane I feel like an idiot hobbling along and a snails pace, face all twisted up with awful pain. I am taking plaquenail (sp?), Arava, and Enberol. I feel like everything I am doing is changing my pain level zilcho. Unless I stay down in bed I get no relief. The doctor has me on vicorprofin, but the dosage has gradually increased because even when I take it I only "sort" of get some relief for about an hour. Does anyone have any suggestions for someone that is just about fed up and ready to throw in the towel.

Comments (8) | Add comment

unipat

1/12/09 4:24pm

I have been down your road many times in the last three years and now I can say that there is no one cure for RA I always tell my sisters in this site that patience with yourself is the best start to find your relief. Keep fighting, triying new meds when the ones you are in don't work. I believe there is a cocktail (set of meds) that will help you out there I found one for the last month so promise me that you won't give up. Continue to keep in touch and do not expect to feel perfect every day. You are not a quitter!!!!!

Gloria

1/12/09 5:50pm

Thank you for responding. I guess I have felt bad for so long now that I don't know what to do. I saw my doctor just like a week or 2 ago and he didn't want to or even suggest changing my meds. Yet I told him how much trouble I am having walking. The only thing is that he is having me see an orthopedic doctor. Should I actually ask him if there is another med that might do better for me? Should I not wait for him to suggest it. Fortunately I know now that I will never feel "perfect" again, I just would like a day that I can walk and look reasonably normal and not be thinking, oh my legs oh my legs hurt so bad. I appreciate your comment. I can tell I am going to enjoy belonging to this site. Alot of helpful information and nice people. Thank you again.

SuziKelley

1/12/09 9:44pm

Hi Gloria =)

Just know that you are not alone. We've all felt the pain that you're feeling. Like you, I've wanted to throw in the towel many times! Sometimes I think that if it weren't for my little ones that need me, I would have a long time ago. My bad days by FAR outnumbered my good days. I have been on Orencia (along with a few other meds) for months, hoping that it was my 'miracle' drug... with as expensive as it is, it should be! Yet I was still crawling across the floor to get the phone because it just hurt too darn much to walk at all. Then finally... within this past week, I'm starting to not feel so bad. I'm wondering if it is FINALLY starting to work? The problem with all of the RA drugs out there is that it takes forever to really get in your system and know if they are going to do what they're supposed to do. I don't want to run a marathon... I just want to be able to cook dinner for my family, and pick up after my 2 yr old. There is something out there for you, it just takes soooo much patience on your part. Too much patience! (((hugs))) I'll say a prayer for you that you find the meds you need.

Hang in there,

Suzi

Gloria

1/13/09 9:47am

I always have a hard time getting people to understand how bad the pain is. I really appreciate your honesty. I would like to be able to just clean my house and also make dinner for my children. It seems like that my house cleaning has completely stopped because I physically just can't do it. I will barely make it into the house to take my coat off and by that point I am in excuriating pain, so I will sit down and look around see the mess and want to just cry because I know I can't. Thank you for taking the time to respond and understand. I am so glad that I joined this site. I had my first physcial therapy session this morning. I made sure I took some pain meds before I went not knowing what to expect. We did 4 exercises and then she did some like electrical zappy thing, that for right now has helped the most out of anything. I was able to walk out of the office with quite a bit less pain than I walked into it with. I will have to wait and see how the afternoon goes once the knee realizes what I did to it this morning...lol

Edie

1/13/09 11:33am

Honey you are never alone. All of us in here know(intimately) the pain, tiredness, frustration, and anger. It is ok to be angry. Those of us who have found this site are here to let you know that we are the ones that know how bad the pain can be. Keep up with the meds. We all are trying to find some relief and praying for the day that someone in a research lab will say "eureka I have figured it out".

I have had RA since I was 13 years old. Here is my secret. Take the meds, rest often, do what you can, when you can and those that don't understand do not matter. Those that matter understand. I will be 60 in May. I have 2 children and 5 grandchildren. I keep on going and on my birthday I will be skydiving (tandum of course) for the first time in my life.

Motto: I have RA. RA does not have me.

Gloria

1/13/09 11:52am

Wow, Sky diving, my goodness how exciting. I am out of my plaquenale, so I guess I need to get it refilled, but will have to wait till I have the money. I like your quote, you have RA but RA doesnt have me. I think I will borrow that from time to time if you don't mind. It is so embarrassing I try not to use my cane if I don't have to, but I had today and I was so worried what the other people in the office might think. "oh she's just a fat girl ohhh if she'd lose some weight, ohh she's trying to get attention." I worry about these things because I guess at 39 I want to feel 39 not 109. I have gotten so much response from everyone I sure appreciate it. I did notice that through my day yesterday that I mentally did a little better just knowing others understand me. Thank you.

Edie

1/13/09 12:15pm

You are so welcome my dear. I do not know if you really noticed but I did. You worry about what others think. Do not do that. You have enough on your plate as it is. So remember this quote from Dr. Seuss:

Those that mind, do not matter.

Those that matter, do not mind.

Try a parafin (wax and mineral oil) bath for the feet and hands. 4 parts parafin to 1 part mineral oil. Heat (double boiler method) to 135 degrees and when the temp decreases to 125 degrees dip feet or hands in and out 10 times, cover with a plastic bag then a towel leave on for 20 minutes. The wax will slide off in the plastic bag and can be returned to the boiler. Great relief and does wonders for your skin by the way.

Also go to a medical supply store and ask for hydroculator packs. you boil them then wrap generously with dry towels and apply to joints like knees, hips, elbows, etc.

both of these are time tested short term relief therapies that I have found useful over the years.

God Bless

talk later

Gloria

1/13/09 3:53pm

I have been running around like a chicken with my head cut off today. I do think, in a teensy, way that today is going some better. Maybe the conversation with ya'all is helping too. I will try your suggestions. I will have to wait till I have the money but it is definitely something worth trying. That is a good quote, don't think I have ever heard it before. I would love to start a little quote book, things that make me feel better. Then I can refer to them throughout the day. You all have a great day! Thanks for your help.

I need help!

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