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newly diagnosed and lots of pain

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sammygirl38
sammygirl38

So I waited a month for seeing my family doctor when my pain had started in my hands and knees, and when I finally saw him I had swelling in my hands and knees big time. He took some blood work and said it seems I may have RA and I needed to see a rhuematologist. So I waited for 3 long months and the pain was so severe I was unable to walk so my family doctor put me on a steroid until I got to see the rheumatologist and it helped me for like 3 days. Finally I see the new doctor who walks in and says I have rheumatoid arthritis and after her exam she says it is in all my joints. I had swelling in my knees, ankles, feet, hips, shoulders, wrists and fingers. I was in so much pain. SO she started me on like methotrexate and folic acid and a couple other medicines. I have continued to work my job but have called off a few times cause the pain was so bad in my knees that once again I could not walk. I really do not fully understand this disease and I was put on steroids again but it helped for like a day. The pain is still bad but I manage to work. I just worry like am I ever gonna feel relief?

0 likes, 22 replies

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  • steelctygirl
    steelctygirl sammygirl38

    Posted

    Spammy girl, so sorry for your pain. I was diagnosed this past May....surprise! The unexpected pain is the worse along with a 4 month wait to see a rheumatologist. Put on methotrexate, prednisone & a month later hydroxchoride was added. Each take 3 months to kick in. I have good days & bad days, but from what I have read it could be so much worse for me so I count my blessings & take one day at a time. My rheumatologist does not believe in pain meds so when I have a flare, it's back on the prednisone. Hope you feel better soon & pray for your relief.

    • sammygirl38
      sammygirl38 steelctygirl

      Posted

      I was also put on hydroxychoroquine and sulfasalazine besides the medications I take for my diebeties so I am pretty sick of medicine. I feel like that is all I do is take prescription drugs. I have been in this pain for over five months and really have not had even one good day YET! I hope I get at least a good day here and there. Everyone I have met with arthritis only has it in their hands, and there pain is no where like mine. I assume my days when it flares is when I can not not walk at all let alone go to the bathroom alone cause the rest of the time I am just close to tears almost daily. I hope you continue to have good days.
    • Rowbirdie
      Rowbirdie sammygirl38

      Posted

      Hi

      the rheumy has done most up to date protocol by putting you on 3 DMARDS from the beginning as your RA is so active. Once you have had them 3 months without improvement in your symptoms, you may well be eligible for a biologic. A biologic changed my life. I had same pain in all joints as you did but not now . I hope you have an appt coming up in a month. Ask about this when you see rheumy. Keep going. There are further options to try but only when you ve ' failed' 2 DMARDS for a certain number of months. 

    • sammygirl38
      sammygirl38 Rowbirdie

      Posted

      Thank you my next appt is not until december but I already think I am having trouble with one of the medications. I willl ask for sure because I barely make it at my job now. Half of the day I am in so much pain and then I sorta make it thru the rest of my day and then when I get home I once again can barely walk or sit down or dress or anything. It definately helps to hear from others, but at the same time it sorta makes me more down hearing about all the medications and maybe one works and maybe one does not work.
  • sia34716
    sia34716 sammygirl38

    Posted

    I was diagonised in May too. Am on methotrexate and prednisolone. Prednisolone works faster while methotrexate takes a while to kick in. Be patient and give the med time to settle in your body . I'm grateful that I'm still able to work . I agree with steelctygirl take one day at a time. It's an awful disease and stsy strong.

    • sammygirl38
      sammygirl38 sia34716

      Posted

      I am hoping I will be able to keep my job since I am always moving and using my hands which by the way is beyond hard cause even moving does not make the pain feel bettter. I wish you luck with your pain and hope things get better cause I just feel at a loss when everyone I know thought I was exaggerating my pain and they just do not understand
    • sia34716
      sia34716 sammygirl38

      Posted

      My pain moves around too. Mostly my ankle , knee, shoulder , wrist and fingers. While I was only on methotrexate it didn't help with the pain . Then doc added prednisolone last month . I m taking them for more then a month now it helps. But I'm planning to ask the doc if I can stop taking it because of the side effects when I see him this nov. I hope ur med will help you with the pain soon. Listen to your body rest when you need to.

    • steelctygirl
      steelctygirl sammygirl38

      Posted

      Sammygirl I'm so sorry for how much pain you are in. Maybe your rheumatologist would give you something for pain until your medications kick in. RA is horrible & few people understand the pain you are in. Hang in there

    • sammygirl38
      sammygirl38 sia34716

      Posted

      It is very hard to get any rest. Do you have any suggestions because I am exhausted so much all the time but when I try to sleep the pain seems even worse so I barely sleep.
  • mary76396
    mary76396 sammygirl38

    Posted

    Hi Sammygirl It took them five years to diagnose my RA, mainly because I didn't have swelling. By that time I had to give up work as the exhaustion was overpowering. I don't think they still took it as too serious until blood tests revealed high levels of inflammation despite MTX, Hydroxycloroquine and predislonone. They did a bone scan in the end which revealed all the inflammation in wrists, hands and fingers, ankles, feet and toes. They then started me on Cimzia injections (a biologic) and I've been feeling a lot better but now I've got pain in hips and knees and still getting flares in my feet and swelling too. I don't think any of us can fully understand this bloody disease but know you will have good periods and know that there will be people on here who will support you when you don't but keep on at the docs if you don't feel your meds are helping as its a guessing game for them to find the right ones for you.

    • sammygirl38
      sammygirl38 mary76396

      Posted

      thank you I think another hard thing is like no family or friends seem to truly understand. I always feel like they think I exaggerate my pain. And to top it all off my husband as much as I love him he tries to do everything for me like help dress me and anything else I need but it makes me feel suffocated. Like I can dress myself (which obviously sometimes I do need his help) But like I am losing my mobility and what makes me (ME) I dont like not being able to do whatever I need by myself.
    • mary76396
      mary76396 sammygirl38

      Posted

      I know exactly what you mean. I hate when people say 'oh I've got that' and push it off as OA. My Husband is supportive as his Sister Has suffered RA for many years but he does the same as your husband and tries to take over things I feel I can do myself. It's hard to say no to them as they are trying to help and we do need their help but we've now come to an arrangement whereby I will ask for help if I need it and he lets me struggle until I ask. 

  • lynn15111
    lynn15111 sammygirl38

    Posted

    Sure wish you all lived in the USA because I've read countless articles from our medical community, as to why people with RA need to be given biologicals as soon as possble to prevent irreversable damage.  20 yeaars ago people here had to jump through hoops and spend a couple seasons on those intro drugs like MXT and so on, but that protocol has changed for the most part.  Some people have it come on like gang-busters and it is relentless.  I investigated the food connection and at the very least getting rid of all sugar will help immensly but there are so many triggers and some are individual, so I urge people to do their homework on what is the best diet they can pursue.  For me going vegetarian is the biggest tool I had to combat a flare until I got on better medication.  Having other pain meds is also apart of dealing with this illness.  A topical called voltaren gel is very good.

    • shirlee86000
      shirlee86000 lynn15111

      Posted

      Hi Lyn

      I was diagnosed around May time with RA it's changed my life I was so fit before that, it seems to of gotten hold of me so quick. The rheumatologist gave me a steroid injection as said the medication will take that long to kick in and put me straight on methotrexate 4 a week for two weeks then onto 6 and apart from being petrified of alwful side effects I was fine for 4 months then they told me to come off it as my enzyme in my liver were raised, I have been without anything for over a month and OMG I have been in such pain, living off paracetamol and Ibrufen to help me. 8i also have these marks that have appeared on palms of my hands, the rheumatologist said he has seen nothing like them before, I think as my immune system was suppressed that I suddenly became allergic to something but god only knows what. I am going to see him this afternoon I wish he would put me on biologics I have read great things about them, but I think he wants to put me back on methotrexate maybe 4 a week this time, this disease is so painful I think people underestimate it

    • lynn15111
      lynn15111 shirlee86000

      Posted

      The old protocol here was two sessions of MTX - so your RA doc will likely put you back on it.  Then after your livers builds up those enzymes he can likely transition you to enbrel or humera, both excellant.  However it does take time for those to work, unless you are allowed to get an infusion, which puts it in your system in a matter of days, rather than months
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