Hello, new here.... just got diagnosed
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| Thu, 01-26-2006 - 10:21pm |
Sorry this got so long, but it felt good to get it out.
I just got back from my Dr. appointment. She said that I do have RA & she is making my appt. with the Rhuemetologist for me tomorrow & will let me know when it is. I guess I am relieved to know what is causing this pain, but I feel so depressed right now. But on the bright side, she finally prescribed me some pain killers stronger than advil. My Rhuematoid factor came pack positive & my Rhuematoid factor titer was 160. Does that number mean anything?
I'm only 31. This came on so quick that I'm just begining to understand whats happening. In December it hit me like a truck. All at once! It started with my feet, then moved to my knees & then moved to my hands. Sometimes I wake up & wiggle my fingers & say OK, no pain. And then collapse back on the bed from the pain in my feet when I stand. Yesterday I couldn't bend my knees, today I couldn't use my thumb enough to hold my key when I turned the ignition.
I would like to know what the best way to make someone understand what I have (RA) is not just like the arthritis Grandma has? I'm upset with my family members saying just take some tylenol, it will go away. Any suggestions? I'm finding out lots of things by reading this board that give me hope. I'm just hoping my husband will keep being as understanding about my pain. I think when he saw the amount of painkillers I came home with, he has a clue that I do have a problem. He was very quiet tonight.
Thanks for reading,
jennifer

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Dear Jennifer,
I am sorry that you have been diagnosed with RA. I am sure Molly will give you links that explain what the pathology means.
This board is a great place to start on educating yourself on basically how to help yourself and manage your life with RA and cope with the pain. Many of the members here have great advice and "tricks of the trade" on how to cope with joint pain and preserve your joints.
There are many types of RA and whilst we feel it is important for our family to know all about the disease along with us, you should remember one thing no one can SEE pain, or its origin & whats going on in our joints to cause so much pain. Even with RA we have days where our pain is so low we can ignore it ( we sort of get used to living with it and our tolerance increases) to days where the pain is just unbelieveable when we are in a flare or after days of constant pain our tolerance just wears us down. This is all so hard to explain to family members and when we are first diagnosed we just dont understand this disease ourself, so how can others ?
Dont worry too much about the advice from others at present, they would be well meaning I am sure ( five years down the track my well meaning mother whom I love very much told me in all sincerity a month ago that if I under went a re birthing experience my feet would be fixed as all my anxieties/ stresses whatever would be "rebirthed" away and I would be cured like others) !!! Well that just cracked me up. Over the yrs many times I have been cranky with her for not really understanding this disease.......but I am aware that she just does not "get it" and cant see the pain I am in some days.
Honestly sometimes you feel like hitting people over the head with a shovel and saying can you feel that ? I cant. So then you cant have pain. ( simple way to explain pain to people hey)
Your Husband, give him time he is most likely concerned for you and worried, as your being unwell impacts on your whole household. Jennifer all will be okay, for the present take you analgesia on a regular basis so you cope better, educate yourself and see your doctor. Not all RA progresses to be a debillitating illness, and once out of this first flare you may settle down and cope okay. Lell
Welcome to the board! You have found a great group of ladies here... Sorry you had to join us though...RA is not a picnic but there are ways to manage your pain and stiffness and get on with living. Trust me when I say that depression is normal. It takes a while to get used to the idea that you have something wrong with you that isn't going to go away. I hope the rheumy you are going to see will be as wonderful as mine. I have been so lucky to find a doc who really listened to me and worked hard to help me feel better. It has taken more than 5 years for me to find the medication to slow down the progression of my RA. I doesn't always take this long but I think my body is stubborn by nature.
There are a lot of meds out there and your doc will probably start with the mildest ones and work his way to the bigger guns if needed. Do you mind me asking what types of meds you have now? I take a pile...most of us have our own small pharmacy right at home! But the right combo (or cocktail if you like the sound of that better) is out there. My advise is be patient. Give the meds a while to see if they work. Communicate your pain and stiffness to your doctor. And remember, the doctor works for YOU. Ask questions. I found it helpful to take a friend or family member for my first few appts to make help me remember everything I heard.
Lastly, be easy on yourself. Rest when you need to rest. Don't be afraid to ask for help if you need it. Cry if you feel like it. And vent here with us...we understand...
Heidi
Welcome! I actually have PA (psoriatic arthritis) but it's treated the same way as RA. I am on ENbrel and Methotrexate.
I can tell you that my husband tried to "ignore" my disease, in hopes it would just go away I guess! Many men it seems go into denial out of fear...and men want to FIX things. When they can't, they get angry. Chronic illness can be tough on relationships, but encourage him to learn all he can about it. I think that really helps.
Michele
Jennifer, welcome to the RA board!
Molly
Welcome to this board, Jennifer. Everyone has covered just about everything. I do want to encourage you to have your husband go with you to the Rheumatologist appointments in the beginning. My husband did and it really, really does help them to understand. The rheumys understand what we are feeling and know how to explain it to our family.
Please feel free to discuss and ask questions. We want to help you with all of this.
Gentle Hugs,
Vicki
(((((Shelly))))) I know you are really struggling with all of this. Maybe if you posted some of upsetting things, you would feel better. It really helps to vent away and let go of some of it. We do not judge here, we have all been where you are today. It will not always be this hard. It does get better. With the proper meds, knowledge and listening to your body, you will be able to enjoy your life.
Gentle hugs and understanding,
Vicki
Hi Vicki......hate to complain, but seem to be doing a lot of it lately!!! I just looked at your profile..."husband's maid".....love it!!!! I just did mine and put "husband's maid and secretary"!!!
Anyway, I am sooo hurt that my very best friend in the whole world is just plain ignoring me and my RA. She hasn't even called since my rheumy appt. last week to see how I even made out....this was the 2nd rheumy I've seen. She won't discuss RA with me....she just says I shouldn't be worried about becoming cripple.....end of discussion. I just need supportive people and I thought that's what best friends were for.....that's what I do for her even if I think she's being stupid. I think I'm going to lose her as my best friend...have to find new ones. People just say the wrong things and it's happened enough now that I am ready to ask them if they would like to have RA.
Ditto for my kids...neither ever ask how I am.
I am a very caring, compassionate, empathetic person and my therapist tells me that my expectations for other people are way too high, that I can't expect them to act the way I would. But, that is what I do...expect them to do what I would do and when they don't, I'm hurt and angry.
I'm still in the learning stages of RA, still investigating all my options, so my head is still very confused. I think it is going to take me longer than I thought for this to level out. In fact, I think I'm going to make my 3rd new rheumy appt. on Monday....ugh!!
Well, for now, that's me in a small nutshell.
Shelly, you have to let go of the actions of others. You can't change them. My husband is constantly telling me this. If you can't change it, forget about it. My son is 32 and his mother-in-law supposedly has RA. She has never been on any meds, does not have a rheumy, no pain ever. I have no idea as to who told her she has RA or if she really has OA, osteoarthritis. So, my son thinks I am on too many prescriptions and thinks the pain is in my head. I have tried to get him to read information on RA and FM, but to no avail. He does not ask how I feel and if he ever did, I would tell him fine. Some of us use this word as our code for "not good". You just get tired of going into it and most people only want to hear fine anyway. Most people are clueless and that is why this support board is so important. We live your life and understand. Even my daughter thought I was always complaining for no reason. Then she got zapped with Fibromyaglia and she apologized to me and said she had no idea how bad the pain was. Until you walk in our shoes, it is very hard to comprehend how it affects our whole life.
Hang in there Shelly. We do understand.
Hugs, Vicki
PS besides the "Maid" part, I am known as the Goofball of the board and I have some very good company there with me!!! ;o)
TTC since # 1 since 3/2002, IUI on 11/19/02. Took a break to move 6/2003.
Developed Severe Rheumatoid Arthritis 2/2006.
TTC again!!! Off BCP since April 2008.
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