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More confusion and questions

Posted , 9 users are following.

firesign90
firesign90

Hi, I posted last week about my positive RF and high CCP labs. I have an apt with a specialist in Bangkok, where I live, for Aug. 5, where I will get scans. I am trying to prepare myself mentally for all of this. My main concern right now are the drugs. Being that I have no pain or stiffness or swelling, in less I drink alcohol then I'm swollen all over for days and stiff in the legs from my butt to my feet until I sweat it out. I run and lift weights and have the little nagging pain here and there which is normal enough. If I am a symptomatic and doe have this disease are mess absolutely necessary? I understand they are to help with stopping the damage to joints and pain. Could I have joint damage and not feel it? Like most people new to this, the drugs seem horribly bad for you. Are there any drugs that don't completely knock you down? If the inflammation is not present in bloodwork do you need to take these drugs? Any advice or stories about the earliest onset of RA symptoms and drugs that have not wrecked you are really needed. Thank you.

2 likes, 43 replies

43 Replies

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  • sia34716
    sia34716 firesign90

    Posted

    Do keep me posted if you found a good doctor in Thailand . I might want to seek for a second opinion too in Thailand as my country does not have a good doctor.
    • firesign90
      firesign90 sia34716

      Posted

      Hi Sia, I will keep you posted. I was referred by a nurse from the UK that took her own sister to this guy. She had been diagnosed with RA but did not think it was so. Dr. Virat is especially good as diagnosing hard cases and finding misdiagnosis. Im hopeful that I will get the right on from this DR.
    • firesign90
      firesign90

      Posted

      I want to thank all.of you for taking the time to reply to me. This seems like a great community of support. The more I think about possible symptoms the more I think that I could possibly have RA. I have been having tingling i my hands for a few minutes upon waking, no pain or stiffness but it it still is a symptom I believe. I am supposed to start a new teaching job at the end of August and restart my University work as well. I woukd not think I could do this if I had to start treatment as I know it will take me time to get used to the meds and the stress alone will be enough, nevermind teaching and uni. I am. contemplating telling my new employer about the pending Dr. visit. This really does suck on all levels.
    • sia34716
      sia34716 firesign90

      Posted

      Thks Fire. I'm sure you will be fine! Don't worry too much as you are not alone . I know it's easier said than done . we are all the same hoping for the best .

    • Light
      Light firesign90

      Posted

      Please don't make any drastic decisions about your job and studies. Everyone responds differently, both to the disease and to the drugs, so hang in there and wait and see. You might find you can handle your work and your illness together quite well.

      There's a fim I saw not long back with Clive Owen and some French woman (name forgotten - Juliette Binoche?). Title something like Pictures and Words. She's a teacher and has RA and she's bitter – a great example of how NOT to let RA affect your life.

      We mustn't let our nasty malady make us angry and bitter. Rather use it to grow as human beings...

  • Emily1234
    Emily1234 firesign90

    Posted

    Hi there i started with symptoms 3 months ago, when I was in pain in my knees and my leftnknee swelled?....now I'm not in pain except for stiff hands and burning at night only. I have no RF but low CCP I don't want to take drugs either...ruemmy gave me a month on predisolone... Says I have probable RA .... I haven't taken them yet.... Don't want too!!!! I've started on oil of evening primrose meant to help. My ruemmy says though if I take them it could in the eearly stages reset my body and maybe halt it forever.what to do i don't know?

    • firesign90
      firesign90 Emily1234

      Posted

      Hi Emily, yeah I have no idea what's going on. I will have the tingling burning for a few minutes upon waking in my hands then it goes away in a few mjnutes. When i lie down at night it seems to come on but its my entire back side of my body head to toe for about 10 minutes. Its almost as it happens only when i lie down, weird. I have no stiffness or pain. I have the usual little pains here and there. I initially went in because o thought my pinky finger was swollen and my hands would feel slightly swollen in mornings but i attribute that to the intense pushupa plank ans burpees i was doing and im sure my form was bad. Unfortunaty, i did test positive for the rf amd a high ccp so thats not good. I absolutely so not want those drugs. I know they have given people their lives back but i feel fine, except for the mental anguish I feel all day wondering if I have this disease. I love that your rheumy says mayb you can stop or turn it around with evenimg primrose i am going to start those today.

    • Emily1234
      Emily1234 firesign90

      Posted

      Your symptoms are I exactly as mine, the entire back side of my body burning except my hands are stiff also. It wasn't my ruemmy who told me to take oil of ebening primrose I'd read a lot about it and heard it was good. My ruemmy gave me one month on steroids...predisolone but I'm not taking them ...at the moment anyway ...he says they may reset my body....I'd be interested to know how long you have had this and how you get on...my started suddenly 12 weeks ago and nothing prior.... Take care x

    • firesign90
      firesign90 Emily1234

      Posted

      Well, luckily I have not had any of the tingle burning for 2 nights now. It does seem to correalate to anxiety. I did first notcice it a few times a few months ago and always attributed it to anxiety. I went thru a period of extreme panic about 1.5 years ago and I know that can manifest the weirdest symptoms. The burning is always when i lay down and start to rest, its when i start to get mindful and relax i notice all the sensations, which make it hard to chill out and sleep peacefully. I dont have stiffness but usuallybhave slightly puffy hands each morning that will go away in a few minutes. I so sleep with my elbows bent under pillow ....who knows tought. Since my bloodwork came back positive i have felt little niggling pains now in my wrists and ankles and elbows that were not there before. It just seems so odd bow that could be. It does seem after my regular workout now i feel aches i never had 2 weeks ago. I wonder how the prednisone is supposed to reset your body? I don't blame you for not wanting to take those meds one bit. I will know more once I see a Rheumatologist.

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