Trying to cope

Arthritis Foundation Forum

Home

Welcome Guest ( Login | Register )

Trying to cope

Rate Topic

Display Mode

Topic Options

Author

Message

Ramona462

Posted Friday, September 22, 2006 1:19 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 1:07 PM
Posts: 10, Visits: 0

I was recently diagnosed with Ra @ 42. It took 6 months for them to figure it out. It started with a swollen left foot. After being in a cast for posible stress fracture, cortisone shots, and Ibuprofen, swollen fingers and knees, I was sent to a Reumy. I'm now in my 3rd month of meds: Methotrexate, Plaqanil, folic acid, prednisone, and a sleeping pill (plus 3 other meds). The pain comes and goes, everyday is different. My biggest problem is fatigue and back pain after standing for only a few minutes, so most times I just go to work and go home. I've picked up 30 lbs since the prednisone. So, that has added to the depression. Most days I can work except for the day after the metho. I'm usually sick to my stomach and extremely fatigued. I try to fight it and go to work anyway and find that I pay for it a few days later. This site is very helpful, I thought I was losing my mind. Thanks for sharing your info, I now know that I'm not alone. On top of my own illness, I am the primary caregiver for both parents with Alzheimers. The faimily is now helping me more because I just cant do it all. Sorry to be so long winded, but I'm so frustrated right now. Simple things like finding shoes and clothes that fit, doing my hair, going to the store, etc. are such a challenge. I look like porky pig and can not get enough to eat. The Reumy is preparing me for a reduced dosage of prednisone, but the last time that happened ALL of my pains came back with a vengeance. We are in the med adjustment stages and trying to get them regulated. In the interim, I'm just trying to cope.

Post #4082882

Top

Susan116

Posted Thursday, November 16, 2006 4:24 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 1:06 PM
Posts: 4, Visits: 0

I know exactly how you feel, I am in the same position. I had to request a blood test for RA w/ my regular CBC. Then I asked my hemotologist for a recommendation.

I read that God gives us our lives for a reason in an Oprah magazine. I think the reason for my RA is to learn to respect myself & put myself first. I have always been a PEOPLE PLEASER until now.

To make myself feel better, I am attempting to get a support group/online support group going & would be most interested in sharing everything w/ you. Please contact me @ isucyclone@charter.net so that we all can work on this together. I keep thinking that when I laugh w/ my friends about this, the pain is much more manageable.

I look forward to hearing from you & anyone else that wants a friend/support group.

Susan

Post #4097542

Top

kathi1

Posted Sunday, December 10, 2006 9:53 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 1:09 PM
Posts: 2, Visits: 0

Reading what you wrote really makes me feel like I am not alone...I have felt alone for so long. I was diagnoses with carpal tunnel went in for the surgery and just never got better then found out I had RA and I have been fighting the pain and fatigue since...tryng to continue to work and not let the company find out. It is so hard to hide it as I am so tired all the time, swollen like a pig and hurt all over. hoping the methotraxate kicks in soon so I can get off the predizone

Post #4097543

Top

Stephanie13

Posted Sunday, December 24, 2006 5:34 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 1:08 PM
Posts: 1, Visits: 0

Hi Susan116, I would love to have a support group,,something, I feel so alone and don't have anyone to talk to that understands how my whole life has changed and not for the better, There is no support group where I live and having one would be great,,Stephie

Post #4097544

Top

Robin B

Posted Tuesday, December 26, 2006 12:04 PM

Group: Forum Members
Last Login: Wednesday, January 07, 2009 6:27 PM
Posts: 116, Visits: 1

Hi Ramona. I get very tired as well. I have to say that since removing the metho and injecting the enbrel I feel less tired. I do not get as tired as quickly. By the end of the work week, things are getting pretty blurry but it is so much better. I creek and crack, if that makes since, but not the sharp painful can’t move leave me alone pain. I am not a nice person and I put weight with pedisone, so thankfully I have not had to go there. I think that we need to be our own advocates as much as possible, do research and bring questions to our Docs. Insist on being treated differently if what you are currently doing is not working.

Kathi1, If you don’t mind me asking: Why are you not letting your work place know of your disease? Mine knows and I am on FMLA already for diabetes. I am not in danger of losing my job due to diseases, are you? If so why? Is it a new job? If I am being too nosy just don’t answer ok?

Post #4097545

Top

Ramona462

Posted Tuesday, January 23, 2007 3:29 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 1:07 PM
Posts: 10, Visits: 0

I’m sorry it took so long to get back. Life continues to happen. But, I just came off of a respite weekend and it was wonderful. Thank you all so much for your comments; they really do help. Since my posting on 9/22/06, my weight has continued to increase, blood pressure on the rise, etc. BUT, I finally broke down and bought three business suits that fit, put on my hose and my (grandma shoes). I think it all just had to sink in. I’m not the spunky, sharp dresser with heels to match every outfit, fast walking young lady I used to be. However, I am a spunky attitude, conservative professional in comfortable shoes, who is learning to take one day at a time. I am reminded daily that I am blessed even in my condition and for that I am thankful.

I decided that this year was going to be different. My doctor wants to change me to injections since the Mtrex wasn't helping (I don't think I can give myself injections). So, I tried my Tahitian Noni juice again (great for my energy level, but could not prev stomach with meds) and was able to keep it down. I also started taking liquid Coral Calcium (Treasure Island?) and was able to keep it down. Now I'm doing something about the weight. The reduction in Prednisone has been tolerable and I was able to do 15 mins of Walk-away-the pounds (low impact) for the first time in 8 months. I was sore the next day, but I did it anyway. I wont say that I'm dieting, let's just say that I am changing my eating habits.

I'm staying away from the junk food, reducing my sugar and sodium intake and just trying to be kinder to my body. After three weeks on a modified eating plan, I have lost about 10 lbs and I feel much better. I don't know if it's the Mtrex finally kicking in or my fear of the needle that's doing it.

I asked my Rheumy to give me two more months on it before we switch. I'm sure losing the 10 lbs has helped my knees and ankles as well. So, I look forward to future communications.

Please feel free to email me: rppoole@earthlink.net

Have a blessed day!

Post #4097546

Top

Ramona462

Posted Wednesday, May 02, 2007 2:17 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 1:07 PM
Posts: 10, Visits: 0

I'm back. I've added Humira injections to my list of meds and it's not as bad as I thought it would be. It stings for a little while and then it's okay. I did great the first two weeks of it, but today is not a good day. I feel like I've been run over by a truck. I'm depressed, nauseous, and just want to go back to bed. I haven't felt this way in along time. I thought that these feelings were gone.

My doctor said that my RA would go into remission in about 2 years. It's been a year and I'm doing much better than when I started, but I was hoping for early remission. Is this wishful thinking? I can't stomach the Noni nor the Calcium anymore. Are these phases normal? How can you feel great for a few months with only minimal pain and then all of a sudden CRASH!? I feel almost as bad as I did when I was first diagnosed.

Post #4097547

Top

Debra11

Posted Friday, May 04, 2007 12:08 AM

Group: Forum Members
Last Login: Thursday, July 31, 2008 1:14 PM
Posts: 2, Visits: 0

Wow. Reading all of this convinces me that I am not alone. I've kept quiet about my Stilles disease for the past year. I have been treated for severe depression also. I was reading about the fatigue everyone has. My Dr. put me on Ritalin and I love it. The reason was because it works with my antidepressant to increase it's effectiveness. My energy is up and I've lost 15 pounds. Hope this may help someone. Anyone have any info on Stilles disease?

Post #4097548

Top

Donna16

Posted Friday, May 04, 2007 8:45 AM

Group: Forum Members
Last Login: Thursday, December 17, 2009 7:50 AM
Posts: 327, Visits: 99

Ramona-Why does your Dr feel that you are going to go into remission and how could he put a time on it. I don't mean to be a bummer but you might not go into remission. you can be controlled,but the disease is active. I have had RA or over 25 years, I am on Remicade, MTX among other things. I cannot say that I was ever in remission-even during pregnancy. I know the feeling of being run over by a truck. That is how i used to desribe it. Now I have less flare ups, but I am constantly fatigued. Just very tired all of the time.

Post #4097549

Top

« Prev Topic | Next Topic »

All times are GMT -5:00, Time now is 1:46pm

Execution: 0.749. 72 queries. Compression Disabled.