quick question (AGAIN
when pain jumps to different joints is it sore all the time or only when you touch or move the joint? what does the pain feel like?
PS. Thank you SO SO much for replying - Julie is asleep so I will tell her of your kindness tomorrow - its 12am here!! Thank you so much - your help means so much to us.
There is pain all the time for me but more pain when you move or touch it. Hope this helps.
Sometimes I'm sore everywhere - sometimes I only hurt when I move, sometimes the pain eases up after moving for a while, sometimes pain gets worse after movement.No kidding I just don't know what to expect.
Sometimes the pain will burn and throb when you are not doing anything and when you move the area that is sore, it intensifies and sometimes the pain will be bad when you try to use the joint. It really depends. All I know from experience is when the pain was roaming from joint to joint it seemed to follow a pattern. Six hours to get to it's peak, stay at the peak for a bit, then start to subside over a period of hours..calm down then go to the next joint. I know that is not very enlightening but that was the ugly side of roaming pain. And sometimes it would feel good after movement, Marian says it, you just don't know what to expect.
Jackie
It's sad to say; but that describes it pretty good for me also. Early on I had a great deal more pain in general as well as if I was lying still and moving. Mobility became limited at first but in time once my doctors were on the right track and treating the illness itself I became much better.
Doctors that don't have a true understanding for RA and it's effects on our bodies will just treat you through pain medication. That's not going to help much. Ease some pain yes; but to get you in the sort of shape where you can carry on a normal life, no.
What is needed is what's referred to as DMARDS (always correct me if I get the abbrv. wrong) that is used to slow the progression. There's lots of people that it slows it to the point of almost hibernation or remission as some like to say.
I've been on numerous DMARDS over the years. Each year needing just a little bit more here or there; or a little something stronger. I'm almost 12 years into this now and I manage quite well...provided I take my medication. I sure hope you have good health insurance. It's very important to those of us with chronic illnesses.
And David; if you want to reply just write it in the box below at the end of the thread. We'll just continue the discussion in one area so every one can keep up with the progress of this discussion. You've already got us interested in Julie and how she'll be managing.
Sweet Dreams to you both.
Lovie
Lovie, You are such a grounding force on this board. I hope you realize that.DAVID: How's Julie? You guys are going to have to keep in touch now ya know?
Hi its Julie here, thank you so much for getting back to David for me - I've been so anxious i can barley eat and I was too scared to come on this site because its frightning! An update. Went to see rheumy on Tuesday - he didn't examine me, and said he would bet his reputation (and he's not a betting man - he added), that I don't have RA and that its hypermobility - he's talking total rubbish - It's so upsetting having to FIGHT to be diagnosed with something I don't want to have! he said my sed rate was normal - 7- but i think figures are different in UK and that RF was same as 3 weeks ago - an 8, which is a weak positive. He is going to send me for an isotope? bone scan - need to wait 4 weeks. I also went to a private GP last night for anti ccp test like you guys suggested so waiting for that. Today I woke up and the knuckle of my ring finger ( which is usually achey every morning was in agony) - it felt warm and there was a red spot on it, plus its a bit swollen). I am so sick fighting with people to diagnose me with this - its so cruel isn't it. Has anyone tried special diets or suppliments etc and has anything worked. I'm scared to eat anything just now, living on fish, veg, fruit and green tea - yuk - don't know what I would do without you guys - seriously - you will never ever know how much this site means to me!When I go to Rheumy, she examines every joint. squeezes, feels for warmth, etc. He did no exam at all? That is awful.
I tried every diet and herbal supp there was. Nothing helped until I got real meds. That's just my personal experience. Others may have found some relief.
Keep posting Julie, as we all want to hear how you are doing.
Julie; It's so nice to hear from you. You've been on my mind since David first posted.
I can not believe that the RD didn't even examine you and had the nerve to say something like that. My blood work is negative...but my doctor didn't hesitate to see that I had an obvious problem that needed treatment. That was close to 12 years ago now. I've been on something just about every since. The time I tried to not use anything I regretted it.
I know the health system in the UK is very different. We have another friend here; Tori (She's not around much lately due to several problems) has been through about the same thing. Horrible, Horrible problems and can get no help at all. Can you see another doctor for a second opinion?
Maybe next time you're in you could print out that page that list of criteria for RA. Blood work is only one of the things....there are several other's that you suffer from. Maybe if you showed him that and said "What about this? How can you explain this?" he might take you more seriously?
Oh I'm soooooooooo frustrated for you Julie!!!
Don't give up. There's help out there for you.
I'm going to continue to think about this. There's got to be away to get someone to help you.
Lovie
Julie, Maybe print out the feedback you have gotten from this board. I think doctors could learn a lot from this board. Your symptoms sound classic. I also get a red spot on knuckle when my fingers flare. The ccp test and the bone scan is what made my rheumy give me a positive diagnosis. Like everyone says on here - it is so important you get treatment. Don't give up. Be assertive and come back here if you need strength. It has given me so much strength.
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