Madeline Concepcion//trying to deal with this diease

Hi, sue Thank u for your response!! it really means alot! I know how u feel it is really hard dealing with this some people do not understand the pain. I push myself to do things because I don't want to feel helpless!! I haven't had a flare up in several weeks but with this disease you never know when it's going to show up, it's like an unwanted visiter, it shows up unexpected. My left knee was hurting just a little this morining,but it didn't continue thank god!!!! normal it will get worse throughout the day. Does the medication make u tired? because I have been feeling really tired lately throughout the day. I'm just wondering like how long I will be able to work because I just don't know how much longer I can continue pushing myself. Are u able to work? if u don't mine me asking.

Hey,

I was doing well and NOT having to take a nap in the day. That was last week, and my PT said I was walking better and I have much more energy it was great..I still had some pain in my feet, shoulder and hands.  

Then I tried to cut the grass... Now I am in more pain and I have to nap everyday. I think it is a combo of meds and RA. RA takes the energy out of you as well. I do not work. I have to sit in frount of a computer all day and be able to type fast. My fingers no longer can move as fast and it is to painful. My pain itself has not gone away since Dec. Yes I was feeling better, but not all the way gone.. Just easyer to deal with, so I guess I have been in this flare since Dec. I understand what you mean by feeling helpless. I hate that I can not just go right into what I use to do around here. Like right now I want to unload the dishwasher, fold and put away the wash, run the vac and clean the bathroom. I would love to dust, and mop the kitchen floor. I use to set out what I would do for the day and get it all done in an hour. I miss those days. I am not one to sit around and here I sit.. It is so great to have so many people understand how it feels to have this..

Keep handing in there, (but not with our finger lol)

warm hugs

sue

Hey, it's me!!! today I'm extra tired..My neck is killing me I don't know if I should go to sleep for awhile but maybe it will make it worse tonight when I go to bed. I think I just got about 3hrs. of sleep I'm a walking zombie!!! Lol!!! that is all I can do is laugh because if I don't I would be crying all day. I'm glad your feeling a little better My shoulder is killing me today, I really can't lift it to brush my hair this morining it was a real task. Please help me out in this what should I do? I'm suppose to start doing my externship on Monday but I am not feeling up to it feeling so tired, and also what am I going to do if my fingers or hands are so stiff and in pain I'm trying but I don't want to hurt anyone if I have to draw blood or give an injection. Please advice me what I should do! Thank you for being there!!!

Hey there,

talk to your doctor about meds to help you sleep. I told my RA doc that I could not sleep because of the pain. So he gave me something to take.. My neck use to be so bad all I did was cry. Since I started taking the metho I have less and less pain in my neck. Now my shoulder is another story. My Ra doc sent me to a RA PT and I was told by him that it is my AC joint, not really my shoulder. Since this is such a small joint he understands why it is like this. Now I can move my arm more, but the pain is still there.

Sleep while you can, rest when you can, is what I have been told.

The one lady who takes my blood at the lap has RA. She did not hurt me at all. It was nice to talk to her about RA and she was the one who told me about a great RA doc.

i am going for blood work tomorrow and if she is there I will talk to her for you.

I do feel RA should not stop us from reaching our goals. Just that we need to do things as our bodies lets us. So if you can take your time with this and not be pushed or so stressed out then go for it. Talk to you RA doc about it as well. I really do feel if you have a good doctor that you work together go get you to where you want to be...

Do not give up! I know there are days you can not stand the pain. Before I had any meds to take I would sit here and cry! I could not stand the pain anymore.. I can say with meds I am doing much better, but I am not where I want to be. I want my hands back, I want to not walk like big bird, I want to work.. Also I had long hair and I had it cut to where I could take care of it. My hands just will NOT hold it all so I could put it up. Now I can take care of my hair, and I love the way it looks! I know about taking a shower and how bad it hurt to move your hands and arms to wash yourself. I can no longer shave in the shower. These are all things I will talk to my doctor about, goals I want to reach. A pain free day.. I know I have to be carful not to set this off again. Boy did I learn that the hard way..  Take time to think aobut what you want to do, and how you can reach your goal. Get some rest..  :)

Sue

Hey, that happy face is for that I finally, got a good nights rest last night! and I don't feel that tired today. I feel like a super hero today I'm full of energy, I hope that tomorrow I feel the same. I wanted to tell Thank you soooo! much for talking to me and making me feel better now I know I'm not alone. Lots of hugs!! talk to you later.

Hi, Thank you for your word of hope and encouragement!!! I'm trying my best to take it easy and get the rest I need, sometimes it's just hard I feel like this is a bad dream and I'm going to wake up from it soon. You were saying about the gloves and wax where would I be able to find them? Do they sale them in CVS? right now I would try anything!!! I think I own every patch they sale for each part of my body!! everyone knows in CVS!!! Lol!!! but I am very happy that I found this site and I am able to speak with great people that are going through the same thing I am. Not everyone understands this RA and they don't understand the pain behind it. Thank you again lots of hugs!!

I get my gloves from Activeforever.com, just put arthritis gloves in the search engine.  I use Isotoner arthritis gloves.  The cover your wrists too and have open fingers at the end.  The paraffin bath I got at walmart.  Take it easy and I hope you find a little relief soon!

Hi, I will definitly get the gloves and wax. I Thank you very much!! today my shoulder is killing me I really couldn't lift my arm up I just put a warm rag on it and I also jumped in the shower so the water could hit that shower, it felt a little better but still can't lift it. Hope you are feeling better!!!

Hi, I will definitly get the gloves and wax. I Thank you very much!! today my shoulder is killing me I really couldn't lift my arm up I just put a warm rag on it and I also jumped in the shower so the water could hit that shower, it felt a little better but still can't lift it. Hope you are feeling better!!!

Hi Madeline. I too recommend gloves to protect your joints from dammage. I was diagnosed with RA last May. At the time, it was difficult to even raise my arms to shave in the mornings or to walk from the parking lot to my job-site. I continued to work for about 6 months after being diagnosed; and then I applied (and was approved) for Social Security and decided to focus entirely on getting better. In the beginning, my doctor recommended that I wear gloves and protect my elbows (elbow pads) and ankles too, as I was having pain and swelling there alot. I used my weight lifting gloves (finger-less with wrist wrap support) and they seem to help alot when ever I'm working with my hands, driving or moving any heavy objects (not recommended!). I started Mx in addition to taking Palaquenal for about 3 months. I found that the day after taking Mx was the worst day of my week, so I planned accordingly. I had to stop Mx after about 3 months due to elevated enzyme count in my liver.

I've since (January '08) been on Sulfasalazine (and palaquenal) with great success (minimal side effects) to date! Last week (for the first time in about year), I cautiously went hiking on two of my favorite (more difficult) up-hill trails without any pain in my ankles the whole trip (or the day after)!! The past few days I've felt better than I have in a long time. I'm hopeful that I've finally found the right mix of meds to keep these symptoms in check and hopefully put the disease into remission for good! Keep up the faith sister.

Regards,

Bret

Hi Bret. I'm having that problem now with my right shoulder I can't lift my arm the warm rags and the hot shower I took made just a little better. I just don't know what to do about the shoulders, I just graduated from a trade school to be a medical assistant I do not know how in the world I'm going to do this, it actually scares me and because I feel that way not knowing how I'm going to feel that day that I have to draw blood or take someone's pressure or give an injection really bothers me! I don't want to hurt anyone! if I would have known that I had RA I would not have went to school for MA. I just want all this to go AWAY!!!!!! but I am going to try the gloves to see if that helps. Thank you for your support.

Hey Madeline,

My shoulder pains became much less severe after I was taking Palaquenal for about 12-16 weeks; and then even less with the added Mx regiment after about a month. I know how you feel :-( Please understand that the possitive effects of the biologic meds take time (3-4 months) to work through your system and you will then begin to feel better. This is the hardest part, waiting for the correct meds (for you) to take effect. Your doctor will monitor the positive effect of the meds from your blood work and feedback from you. You may want to keep a diary of how you feel daily/weekly as this can help you guage the effectivness of your medication and help you stay focused on positive outcome. Be careful not to lift any heavy objects during this time and be aware that if you are right handed, this will usually be the side where you have the most pain because you are using it the most.

I was working retail when I was diagnosed, and was moving heavy batteries, solar panels and standing all day on cement floors :-( I'm accustomed to lifting heavy objects as I've been pretty active and lifted weights at the gym since I was a kid. However, with the onset of RA, my body (and my doctor) told me not any more. If I did push myself and move anything heavy, I would pay for it the next couple days. I'm beginning to feel more confident with moving heavy things occasionally now, as my symptoms are less severe now. But I'm still very cautious, as I dont want to cause permanent damage to my joints. I decided my modest paying job wasn't worth the potential damage I could cause to myself during this period of time. Your situation is a bit different just graduating and starting a new career field that requires a steady hand and some heavy lifting. You will know what your limits are at this time by your own symptoms. If at all possible, I would recommend taking some time off. The hardest time of the day for most RA patients are the mornings; so if you can arrange a part-time schedule that's later in the day that should be easier for you to handle. Working in the medical field especially, your employer should know your limitations. My employer gave me a chair to set, rather than stand all day behind a counter during that time. That's the only way I was able to keep working for 6 months after my diagnosis, as my ankles and feet would become too sore otherwise.

Stay positive and patient with your body healing and you will feel better Madeline. I recommend swimming, Chaquzzi and light walks when possible.

Take it easy sister.

Regards,

Bret

Hi, I went to the RA Doc today, she wants to put me on the injection or infusion she is giving me time to think about which one I want. I'm a little upset today!that's because I didn't know that having RA you can get cancer or even the injections especially with me that I have a family history, I'm not saying I will get it but just knowing that is a possiblity scares the hell out of me. I just don't want to do this anymore that's how I feel I'm so tired of the pain and the fact that I can't do anything about it. Sorry!! I just want to be me again!!!!

Sorry you're having a crap day. The first time my doctor told me about the potential serious side effects from the variosu meds I've been on, I wanted to hide somewhere dark until it all went away.  Being nervous is normal.  Have you discussed your family history with your doctor?  It's an important cionsideration in deciding which meds to choose and you can discuss maybe starting with the least scary drug. 

Three years ago, I decided to start a biologic despite the scary list of side effects.  At the time, I had a huge problem and realized that big problems require big solutions.  Only you can decide how big an impact RA has on your life and what risks you're willing to take to increase your quality of life.  You have to weigh the pros and cons, researching the facts help (the internet is wonderful, but can also scare you).  Try poking about on this and other sites and then go back to discuss your findings, questions and concerns with your doctor.

Giood luckk!

Hi, I went to the RA Doc today, she wants to put me on the injection or infusion she is giving me time to think about which one I want. I'm a little upset today!that's because I didn't know that having RA you can get cancer or even the injections especially with me that I have a family history, I'm not saying I will get it but just knowing that is a possiblity scares the hell out of me. I just don't want to do this anymore that's how I feel I'm so tired of the pain and the fact that I can't do anything about it. Sorry!! I just want to be me again!!!!

Hi, Jan I'm sorry, to hear you have RA everyday I tell myself I'm going to do this, I'm going to get up and walk and clean but it doesn't happen I'm sooooo! tired all day that I just want to sleep! I went to my RA Doc today and she wants to start me on injection or the infusion I think that's what is called anyway I have a family history of cancer on both side of my family and so she tells me that having RA and not being treated can cause cancer and also the injections!! I wanted to scream.... I'm so tired of all of this I just want to stay in bed and not move just maybe it will go away!!!! I'm not feeling well my shoulder is killing me can not even brush my hair because of course I am right handed and that's the arm that hurts and I am no good with my left hand. Jan I really hope you are not in any pain and that you are feeling good!!! lots of hugs

Madeline,

I understand your fear, and I'm sorry.  There seems to be several treatments and combinations, and I'm just so uncertain about a lot of things...and I'm an RN.  My doctor hasn't told me very much yet about what to expect. I do know when I was having a lot of stiffness, yoga helped me tremendously, and still does. It probably helps that my yoga instructor is also a physical therapist though.  Also, I have seen a psychiatrist for a few years for treatment of depression, so that has helped me deal with the diagnosis.  I wish you all the best. Hang in there.

Madeline,

I understand your fear, and I'm sorry.  There are so many combinations of treatments it seems, and I'm uncertain at this stage.  Even tho I'm an RN, being the patient for a change is very different. One thing that helped me (and still does) through my first episodes of stiffness and pain was yoga.  It probably helps that my yoga instructor is also a physical therapist tho.  Also, I have been receiving treatment (successfully) for depression for a few years, and that helped me deal with being diagnosed with RA.  I wish you all the best. Hang in there.

Thank you, I just feel so frustrated and so hopeless!!! but thank you for your support!!! I just don't know if I will be able to work and that is another thing that is really frustrating to me.  Thank you again!!!! lots of hugs!!!

Hi, I'm sorry to hear about your sister. No, no one has told me that the methotrexate takes about three months, right now I feel like I'm falling apart my whole body hurts I know we have to go with the flow but it's just so hard! I feel useless! If you don't mine me asking did your sister pass because of the RA? I just want to live a normal life but right now it doesn't look to good! I try to be myself try not to let anything bother me but the pain is always there. I don't know if you know that I just graduated from Medical Assistant school right now I am doing my externship and it is so hard I was filing yesterday and my hand automaticlly started to hurt and my fingers but I had to do because it is part of my extern, I was planning to work for about a year but I really don't think I can do it. The reason why I say this is because I have been doing my externship for about 3 weeks now and all the moving around and filing and standing is killing so if I can't do it for 3 weeks what makes me think I would be able to do it for a year, every time I leave my extern site I feel like a truck ran over me thousand times I thought I was going to fall to my knees yesterday when I left the site. Please advise me on this I don't know what to do and also I'm always tired all I want is to sleep. and the RA Doctor now wants me to do the injection or infusion she rather give me the infusion. HELP!!!!!!!!!!!!!!!!

Hi Madeline, I'm so sorry to hear that you are feeling so bad. I really do understand. It is horrible. I always say that no one knows how it feels except those who have or have had RA. When my sister was suffering, and no, she did not die from the Ra. she had a stroke many years after she went into remission. But when she was in pain, I had no ides what it was like. I didn't have RA then and just figured," how bad can it be?" Well now I know. And the same with my firend that I mentioned. She has had RA for 30 or more years. I would see her limping and saying how she hurt, but I didn't understand. It's very hard for those who don't have it to see how bad it really is. I wish I could say something that would make you feel better now, but all I can say is if you find the right meds, it will get better. It may take a little while to find the right ones, but it will get better. I forget when you were diagnosed, but it took me a few months for the metho to kick in and then i still had a flare every so often. i still have pain now and it's been 8 years! But i just try to adjust my life accordingly. It's not easy. i spent many a day crying and asking why me. I still wish I could be like people I know who don't have RA, or any health problems for that matter; and say why is this happening to me? that's why a site like this is so important, because we get to see that we are not alone. It's true that misery loves company. I'm on 10 mgs of methotrexate once a week and 8 mgs of prednisone a day. I also take pain meds from my pain management dr. I have 3 bulging disks in my lumbar spine so I went to see him. He gave me 3 injections, but they didn't help. So now he has me on pain meds. I'm very sleeply and tired too. That can be from the meds or from the RA. I sometimes feel like my life has been taken away from me. So as you see you are not alone. I just try to do the best I can and enjoy the good days. I do hope you find a med that will help you and that you get some relief. I admire you for trying to do you studies. I wish you all the best and look forward to hearing from you again.                                  

Regards,                                                                                                       

Evei.

Hey, Thank you for the reply. I know everyone thinks that it's not that bad the pain if they only new!! when I went to see the doc on tuesday, she said me being tired all the time is the RA she also said that I can still have pain with the meds or not. I guess we are in this together and this site is great because we can all comfort and understand each other, before this site I thought I was going crazy and that I was the only one that had RA. I'm still in some pain this morning I just hopeing that either I get use to this pain and I just won't feel it anymore or the pain just will go away! wouldn't that be nice. I'm going to ask you something I have a 18year old daughter would the doctors be able to determine if she will get RA or if there is something to prevent her from getting it? my mom has osteoporsis one of her sisters has RA actually two of her sisters have RA so I must of got from them but I really would not like my daugther to go through this and sometimes she will complain about her leg hurting or her arm and it scares me just because she so young! and she has her whole life ahead of her.  I have her taking vitamins and walking I don't know I just think that if she is on vitamins and goes for walks she will be o.k. well let me let you go!!! and I will talk to you later.

Hi Madaline, I really don't know if there is a test that the drs could give your daighter. I feel the same way about my sons. I didn't develop RA till I was 57. My sons are 46 and 48, so far they are fine. I pray it will stay that way. You should ask your dr if there is a test. she should know. Then you could put you mind at ease.                                  

Today has not been a good day for me. I just feel achey all over. It rained and I can always tell a difference. I took a nice warm shower and it helped. Have you tried showers? They( the shower) relax the muscles and help the bones.                           

Hope you are feeling better,                                                                             

Evei.

HI, I'm sorry your not having a good day!! but I'm having a bad also my legs hurt and ankle and my left thumb. Thank you for your advice! yes I have tried the warm showers and they do help a little last night I had a bad night because no matter how I laid my body just hurt so bad! I don't know if it was because it was raining or I just was having a bad night! but it's not raining today and my body hurts but especially my legs and ankle and my thumb. I will talk to my doctor about my daughter. I'm just thinking how I'm going to the doctor office to do my externship and take bloodpressure and draw blood if I'm feeling this way especially, that I will be on my feet all day! I'm just trying to finish my externship so then I can decide what I want to do, but it just seems that everyday is getting harder for me.

HI, I'm sorry your not having a good day!! but I'm having a bad also my legs hurt and ankle and my left thumb. Thank you for your advice! yes I have tried the warm showers and they do help a little last night I had a bad night because no matter how I laid my body just hurt so bad! I don't know if it was because it was raining or I just was having a bad night! but it's not raining today and my body hurts but especially my legs and ankle and my thumb. I will talk to my doctor about my daughter. I'm just thinking how I'm going to the doctor office to do my externship and take bloodpressure and draw blood if I'm feeling this way especially, that I will be on my feet all day! I'm just trying to finish my externship so then I can decide what I want to do, but it just seems that everyday is getting harder for me.

HI, I'm sorry your not having a good day!! but I'm having a bad also my legs hurt and ankle and my left thumb. Thank you for your advice! yes I have tried the warm showers and they do help a little last night I had a bad night because no matter how I laid my body just hurt so bad! I don't know if it was because it was raining or I just was having a bad night! but it's not raining today and my body hurts but especially my legs and ankle and my thumb. I will talk to my doctor about my daughter. I'm just thinking how I'm going to the doctor office to do my externship and take bloodpressure and draw blood if I'm feeling this way especially, that I will be on my feet all day! I'm just trying to finish my externship so then I can decide what I want to do, but it just seems that everyday is getting harder for me.

HI, I'm sorry your not having a good day!! but I'm having a bad also my legs hurt and ankle and my left thumb. Thank you for your advice! yes I have tried the warm showers and they do help a little last night I had a bad night because no matter how I laid my body just hurt so bad! I don't know if it was because it was raining or I just was having a bad night! but it's not raining today and my body hurts but especially my legs and ankle and my thumb. I will talk to my doctor about my daughter. I'm just thinking how I'm going to the doctor office to do my externship and take bloodpressure and draw blood if I'm feeling this way especially, that I will be on my feet all day! I'm just trying to finish my externship so then I can decide what I want to do, but it just seems that everyday is getting harder for me.

Hi, I hope your feeling well! I have tried to play volleyball and my shoulders give out on me even if I only use a beach ball! and then I will be in pain for the rest of the day! I have made modifications in my life because of this disease but sometimes is just not enough for me, I take walks and I excerise but my shoulders are a big problem when it comes down to playing volleyball or lifting something or even moping the floor, it's a big challenge for me but I still push myself and try it anyway!

Hi.  I'm sorry you've been in so much pain.  I think it's good you are trying and making modifications for your RA, but not letting your RA control you.  As you know, it definitely can control your life at times.  I have battled with RA for 23 years since I was diagnosed at 9 years old.  I feel that having RA most of your life is easier than someone who has lived a healthy life and is now trying to adjust.  I know others have offered you suggestions on this site, which is great!  I wish they had this when I was young.  All I can tell you from my experience is that acceptance is the key.  Accept what you can do, what you can offer, make modifications, get rid of negativity, and research, research, research!  Research alternative and complimentary medications and therapies, assitive technologies, and above all take care of yourself.  I have had a long time to get to know RA, but with time comes acceptance.  Don't get me wrong, I have some days that I'm sad and bitter.  But try not to let those days rule who you are and what you can do.  Best wishes to you!!!!!!