RA Question | Arthritis Information

 

I have had this for a long time as you know, but this is new to me. You know when you wake up in the morning and you are so stiff you can hardly walk and the pain is so bad? Ok, well lately, I guess for the past couple weeks or so, if I sit still for say half and hour or so and try to get up I feel just as stiff as I do when I wake up! I am so sick of it! I am doubting myself, I am always someone who says you know your body best, and the pain best. But so many docs have told me that all I have is fibro and I am double jointed I don't know if I am thinking my pain is something else. I never had a ton of stiffness with the fibro. I mostly have a dull achy pain that NEVER goes away with the fibro, and headaches and tiredness that never leaves. Then the JRA gave me a lot of stiffness and sharp pains that came and went day to day. One day they would be in one area, and i guess get bored so they would change the next day. I felt that the stiffness in the morning was the JRA, it feels the same during the day. I have a tough case and have problems finding docs to treat me. I have an apt friday and I think I am freaking myself out. I am not on anything, have run out of the back supply of pain pills and predisone. I am so scared. But do you guys get stiff during the day so quickly? I am so scared! I need a doc to help me and listen!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! GGGGGGRRRRRRR!!!!!!!!Doctors tell you that you're double jointed?  I was just reading that that is just an expression, and what is meant by it is that someone has extra flexible ligaments, but no one actually has two joints where there is only supposed to be one.

Yep! Um, my knees use to bend the wrong way, kind of gross its called, "hyperflexible, hyperextensible" Anyway docs are full of poop! I'll let you know. But no no one will give me a scrip all new docs, just moved across country! So I am starting from scratch ThanksDucky I get like that a lot to especially if I try to sit for very long(a movie or something).  If I don't get up and move around I will end up being very stiff.  I hate the thought of you going with out any thing to help with the pain. Don't give up on trying to get into the Dr. tell them you need to be seen asap. NUTI am the same. At work, I many times, chart standing up as sitting down starts the stiffness all over again, no matter how long I sit. Meal times are terrible. If I go to a restaraunt   I dread getting up because I just have to stand there for a minute without moving because I cannot move. I have not found anything that helps so I just deal with it. It is part of the RA. I hope you find something that will help.I used to get sooooo stiff, but once my MTX kicked in I hardley ever have it happen.  Keep looking for a good doc, fight for a proper diagnosis, and then hopefully get the proper meds.  Good-luck.

OK, two others things jumped out at me.  First, if the pain is moving around, there is something called Palindromic RA or something like that.  Hopefully someone who knows more about it will post.  Second, with your "double-jointedness", have you been evaluated for Ehlers-Danlos Syndrome (http://www.ednf.org/index.php?option=com_content&task=view&id=1347&Itemid=88888968)?

I know it's hard not to freak out, but maybe channel that energy into writing down everything you need to tell/ask the doctor on Friday.  Is this a new doc?  Can someone (GP or old RD) get you a pred pack until you're seen?

I have been tested for everything! My first doc did a very good job with that thankfully. The type of JRA I have progresses very strongly day to day and the pain doesn't jump, somedays things affect me more than others, after having the pain so long you really only begin to notice it when it REALLY hurts. I honestly am not looking for a new dx, I feel I have the right one, went to many docs in AZ and they all said the same. But I have other health complications and past illnesses that make my case not fun...so I have a hard to finding docs who want to deal with me. I was given the run around by the last doc I tried to get to treat me out here. I guess I am just afraid to get the run around again, I want relief. My symptoms have not really changed, just progressed if that makes sense, same pain, just more severe and hard to deal with. I am writing things down, but some docs don't listen and don't care, and that was my last experience. The other doc refused to run any test including blood work, said to come in when I was REALLY big, so that kind of sums up that apt. I need help I hurt a lot. No one will give me a pred pack, but honestly I am scared to get it, because I don't wanna go in there "lookin good" and get the run around again. You know? Oh the stiffness really never goes away, fluxuates as the day goes, but sitting for a little bit of time kills me, always had it in the morning but never this bad during the day, but it is a progressive disease! Thanks!ducky, I don't mean to pry but how old are you?  When does it stop being jra and become RA?  I like a lot of other people have had doctor's who are complete ASSh-les.  They can be demeaning and condescending.  I know you are in a new place and climate that can make things worse. Hang in there. NutI didn't think JRA ever went away....if you use to have it I would think it makes sense you still do. I get so stiff when sitting for any length of time. My knees I am 21, because I never went into remission and my symptoms are still consistent with JRA its not RA, they are alike but different I guess! I don't know! I just know I've had it a long time. Thanks guys! Makes me feel more credible, like I am not faking it and they will help me! Two and a half days!It seems to me that starting from scratch may be just what you need. Let the new doc know just what he asks you, and let him form his own opinion. I am the Queen of stiffness. I recently learned that RA stiffness can be made worse by stimulants such as asthma meds and Provigil for chronic fatigue. RA does indeed make you stiff without other meds. I do feel that the prednisone helps some with my stiffness. The MTX was helping with my pain. I ditched the Provigil. I was simply in so much pain the pain meds did not even work. I cut back on breathing also. LOL I just only use my inhaler if i truely need it. It really has helped me to have this knowledge. It may not apply to you. Hope you feel better soon.Just last night after a two hour movie, I could barely get out of my seat, my knees were so sore and stiff.  Had to hold on to my husband at first.  This, after trying to keep my legs moving and stretching so the stiffness wouldn't happen, but it did anyway.  I think it's very common.  I know exactly what you are talking about.  If I'm seated for a long time (probably over an hour or two) and I get up it's the same stiffness as when I wake up in the morning.  It takes a while for that stiffness to work itself out too.  I get up from my desk at work often because if I don't, I can't walk.  If I have a really long Board meeting, I get up and move around after about 45 minutes to avoid the stiffness.  My fellow board members know and they are ok with it.  I'm not uncomfortable by doing it either.  Gee, I hope you get some answers and relief soon.  Keep us posted, please.  hiking_gal
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