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SUNSHINEBLUE77's Photo SUNSHINEBLUE77 Posts: 119
4/25/12 8:27 P

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Hi there! First of all I can tell you that the members here have been a godsend to me! They are so incredibly welcoming and calming when you feel absolutely at your worst...so use the board! I am still learning about how to manage the flares. I have been having symptoms for 4 years but had my first major flare on Thanksgiving. I am still trying to figure out how to handle them...after 15 weeks of prednisone and 40mg of humira biweekly, I thought I was finally feeling better and then boom...another flare. What I can think of right now is trying to manage my stress. I am starting to believe that a stressful time for me is going to equal a flare...so maybe you can take a look at what is going on in your life and see if stress is a culprit.

Hang in there!!!

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DEDICATED2HIM's Photo DEDICATED2HIM Posts: 3,469
4/24/12 10:35 P

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hi...I am in one constant flare. I don't think I ever have my flares end...they just all blend into an everyday event. I have Psoriatic Arthritis(PsA) and my hands,shoulders, hips, knees...and feet are all a mess. Probably the worst part is my spine. I have psoriatic spondylitis and my spine is almost all fused. I've had three hip replacement surgeries and am now going to get my shoulders replaced. I take 50 mg of Enbrel weekly. and that's it (although I'm often also on high doses of prednisone for double duty: asthma and PsA) I used to take MTX and Imuran but my new rheumy got rid of all those because I have immunity problems and he was scared of major infections like I tend to get easily. I cannot take anti inflammatories because I had a gastric bleed on them.

That's a summary of my history with RAD...however (oh yeah, I was diagnosed 6 years ago, but had had symptoms long before) Anyway...I am not comprised of this disease (believe it or not ! ) I'm an artist and a writer and generally have a wacky sense of humor. I think it's important not to BECOME our disease. Don't let it swallow you whole. Fight hard to maintain your identity despite it.

that's my two cents.
Welcome to the team.
Cynthia

Edited by: DEDICATED2HIM at: 4/24/2012 (22:37)

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CHANTAY2005's Photo CHANTAY2005 Posts: 70
4/23/12 8:01 A

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10 Things Iíve Learned From Living With Chronic IllnessEmailShare
1. Getting all of the rest that I need does not make me lazy. Even when Iím not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like Iím not doing much, Iím still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, Iím not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didnít lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.

3. If Iím going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when itís just not possible to do something, cancelling at the last minute is perfectly acceptable. Iíll be honest, and Iíll tell you the exact reasons why Iím not able to participate. Please donít take it personallyÖIím just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard. (I used to think that doing so meant ďgiving up.Ē) Just when it feels like Iíve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I donít think there is such a thing as ďcompleteĒ acceptanceÖthereís just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad Iím feeling, no matter how much pain Iím in, itís *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, itís fineĖsometimes even healthyĖto feel angry and frustratedÖbut I have to know how to release this energy in a way that doesnít harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. Iím completely entitled to feel everythingĖemotions, symptoms, and otherwiseĖthat results from living with my illness. (Iím entitled to feel everything, that is, except shame.)

9. While a positive attitude isnít going to ďcureĒ me of my illness, itís certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloomÖbut I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another oneÖuntil I realize that everything is indeed okay.

Stay tunedÖfor the next adventure of Rheumatoid Arthritis Guy!

Thought this would be good reading as well

Kim


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CHANTAY2005's Photo CHANTAY2005 Posts: 70
4/23/12 7:58 A

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For me I have multiple things going on as well so I have the plaquinel,methatrexate and cymbalta celebrex combo going on right now and it has enabled me to move more and definitly sleep better. I dont think there is any right and wrong answer to any of the meds its just finding the right combo for you. I would also suggest keep moving even if it is in a chair that you excercise do it. The more we move the better our joints and muscles will be even if it hurts some press on through the pain in the long run it will be worth it all. emoticon

Kim


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CATHOLICCORGI's Photo CATHOLICCORGI Posts: 3,875
4/23/12 6:22 A

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I've lived with my RAD for over 12 years now. My rheumy says I am unusual in that I am still on plaquinil. My flares involve my feet, shoulders, and hands. My feet feel like they are swollen into pillow size lumps...LOL! I also have fibromyalgia, and lately it had been a greater problem than the RAD. Every square inch of ME hurts... Skelaxin helped that. When I eat right, exercise some, go to chiropratcor, it is easier. Losing over 50 pounds has helped, but weight is a fluctuating battle. Anti-inflammatories are my friends! LOL!
Accepting RAD is one thing, fighting it to the best of your ability is the best thing!
Every day I can wake up and still be in my right mind, I can give thanks. The body is going south, but the mind is still in the building! For this I am grateful!
May you achieve your goals and know that who you really ARE is more than RAD!
SP can help!
This team is a great gift!
Thanks to everyone for your encouragement and support!
emoticon emoticon emoticon

Step into the unknown with confidence! Trust that in the darkness of that first step there will either be something solid to stand on, or you will be taught how to fly!


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PURPLEWOLF80's Photo PURPLEWOLF80 Posts: 55
4/22/12 12:57 P

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I am recently diagnosed with RA and I believe I'm in my very first flare now. The first symptom I had was my face because I also have trigeminal neuralgia which is extreme pain in the major nerve in the face. After that hit I noticed that my feet felt like pins and needles and now my shoulders feel like they have been hit multiple times with a baseball bat. I try to keep moving even as slowly as I possibly can and do simple stretches to move my joints. I am also on 6 tablets of methatrexate a week and my doctor is weaning me off of the prednisone. I don't feel that this route of treatment is working for me all that well so when I get together with my doctor again I will be discussing it with him. Warm showers also seem to help me out because they loosen the muscles around the joints allowing the movements and stretches to be a little easier. The best advice is to stay in constant contact with your doctor and don't ever be afraid to tell them that the treatment they have you on is not working for you. Mine told me that within three months of the methatrexate I should be feeling so much better but I'm not so that will be the main focus of my next visit. I'm also sure that there will be a lot of people here that will be able to give some advice but everyone is different and it really is a try and see kind of thing when it comes to dealing with flares and symptoms.
Jennye

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4/22/12 11:05 A

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Hi everyone ! Just returned to SP after a hiatus. I have lost 38lbs and have 40 more to go, for this I am very grateful. Had such a setback, was on Humira for 9 mos and developed GI symptoms, reported my issues to all my Dr's and not 1 suspected Humira would cause 21 stools a day. Finally, it was discontinued and all my symptoms disapperaed. Petrified, I refused to take enbrel and stayed on methotrexate. Well, I went into a flare 5 weeks later than brought me to my knees. In my entrie life I had never felt so scared and sick.Body, muscle pain weakness and back and neck pinched nerves etc. Such leg thigh weakness... all happened in just 2 days. Good news... I am beginning to feel better. Enbrel 50mg weekly, Methotrexate 6 tabs weekly and Prednisone 10 mg daily. This was my 1st flare.... so I am reaching out to hear & learn how to prevent, signals it is coming, how long it took for your meds to kick in and what things have helped and worked for you ! Thank you all in advance.

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