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Hi everyone,im 53 and have been on bad pain in my hands,fingers wrist,feet and toes,ankles ect for some time now,endless trips to my GP,and fobbed off with more pain killers ect..i was tested for RA 2 months ago but he says it was negative with just some markers for infection,and last week i had to really push to get a referal to a Rhumatologist,which i now have in august,pain is so bad most days,im so tired and fatigued,dont sleep well and takes me ages to get up in the morning,i find if i stand or sit during the day it hurts,feel so depressed and like crying,i wish the world would stop sometimes so i could get off,just hope this referal answers some questions for me..Thanks for listening,as i find others just dont understand x

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10 Replies

  • Posted

    Hi there,

    you could easily be sero-negative ( no R factor in blood) and still have RA. I do. I'm miserable-- it's in my entire body and I've had it for 20 years. Get to a RHematologist. There are treatments. . .not so great for me, but i'd be much worse if I didn't have them.

    Good luck--fight for your health. Your are worth it, and it is depressing--and also causes depression!!!

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    • Posted

      Thank you barbara,it seems a minefield to me right now,cant wait to see the specialist in august..i have the depression too which doesnt help,this past 2 weeks have been terrible pain wise,sometimes i just have to cry..xx
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  • Posted

    Go ahead and cry. . . It's horrible. I do know, and no one knows what this pain is like. If you can find a counselor to talk to do. I'm in the US. I would let you cry on my shoulder, too. It's so hard. Hang in there. I have depression, too and that's tough. Get on an antidepressant ASAP., too. You're in for a right ride. I wish I could get rid of it myself, for all of us.

    Barbara

     

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  • Posted

    Sorry you are suffering. I went through the same pain and no one seemed to understand what it felt like.

    Auguat is a long way from now especially with that kind of pain. I had to do a sit out at the doctors office to get seen before my appointment because I couldn't wait. More blood work was done and I was put on prednisone. The pain was gone almost immediately and I started thinking I'd imagined it all. I started the triple therapy (plaquenil, sulphursalizine, methotrexate ) and weaned off prednisone. Whereas the pain is not like it was initially, it is still part of my life now.

    You need to push your doctor to see you sooner. I can understand your pain and depression and fatigue. I can't promise it will get better but it will definitely be more manageable. Learn to slow down and rest whenever you can.

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    • Posted

      Right!!! I agree it would be liberating to know. I was diagnosed with RA and not given a lot of information except that I was severely sick and needed to be treated aggressively with high risk meds and then I was told the meds could cause more issues but not treating RA was not reversible but the meds side effects 'could' be reversible if caught on time. I was overwhelmed to say the least and felt like no one believed me hense the depression. I went to my rheumatologist that first time because I couldn't wait and I was taking more ibuprophen than is good for me. I told the receptionist that I would just sit there and pray the doctor could squeeze me in. After an hour and a half I was seen and to ease the pain I was given prednisone until the results came back.

      Like someone on this forum told me, life as 'I knew it was over' and I'm living life with RA now. I'm learning to adjust.

      Find a way to get seen by your rheumatologist sooner so you can get the appropriate blood work and meds. Do a lot of web surfing to try and find answers. Adjust your life and learn what works and what does not. If the people around you are not supportive and don't understand find ones that do.

      It can be frustrating but stress is not good for RA.

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  • Posted

    Hi Louise

    what you are describing sounds exactly like RA( albeit seronegative as others have said)

    ...and August sounds a long way off and RA pain is unbelievable. So we can all identify with your current situation. 

    maybe you could ask for a cancellation if one comes up earlier because things can only get better once you ve had this appointment.

    and believe me they will. Not only can they relieve pain for a while with corticosteroid shot but they ll begin trying to find treatment that will work.

    it took about 9 months for stuff to really work for me- each person s different. But the uk NICE guidelines stress early diagnosis and aggressive therapy. I think GP s are sometimes slow to refer. Good for you in insisting on a referral.

    The fatigue and depression are part of RA and hopefully will improve as the whole condition is addressed. Can you take someone with you to the appointment? I found that helpful as there was a lot to take in.

    hope you get seen as early as possible.

     

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  • Posted

    Babe if it is ra you have my sympathy I was diagnosed in uk 5 yrs ago it has taken that long to find the combination of drugs that work but the ones I have tried have given relief of symptoms for a while I rarely have the level of flare ups and pain I had at the begining. Can i just point out depression is not caused directly by ra more by living with the pain and effects of a chronic disease , exercise like swimming really helps with the pain and also with depression I do 2 sessions a week of 32 lengths (a mile) and if I don't do it I notice I am stiffer and in more discomfort and my mood is worse. Antidepressants are proven not to be so effective in people with immflamotory diseases but I do recommend getting counselling from either a referral to pain clinic at a hospital as they help people in tor oil coping with a chronic disease or positive steps can put people in uk in touch with counsellors. Do join a ra group it helps to talk to people who actually have ra good luck chick you are not alone 
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