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Is it RA? what should i do, no one believes me

Posted , 9 users are following.

enam999
enam999

one morning i woke up with slight tiredness (stiffness) in the fingers of my right hand. This was in mid october.

This was followed by numbness/tingling in my elbows, arms and wrists. The stiffness gradually has increased and can prominently be identified as "stiffness" now. 

Then my feet started giving me trouble (starting with my right foot), i couldnt walk..i limped probably because i was too paranoid to put pressure on my right foot. walking felt like i was putting pressure on my right ankle and the joints. Then the condition went away on its own.

Next followed red hands and feet. My feet and hand became red and hot too specially at night and at times during the day too.

i had tests..RF factor, antibodies, anti CCP, CRP, ESR, and everytime of test possible for RA but all are negative. This was around the 3rd to last week of november. 

I went to a rheumatologist who thinks this is due to " vascular hypersensitivity" triggered by some unknown reason and he has givem me:

propanolol 20 mg twice a day

pregabalin 75 mg (once at night) 

its been about three weeks and this is the fourth since i am taking these meds but dont find any effect on my health.

current sympoms:

The joints in my feet...the two round balls on the sides, hurt now.

the fingers of hand and feet hurt.

my wrists hurt

my knuckles hurt too, especially the knucke of my little finger on both hands

my little fingers of both feet are swollen/lumpy and red almost persistently. (Left was continuously lump and red from the beginning and the right has started to become the same since a week now).

my hands and feet are still red. 

my wrist points burn

my elbows and arms burn

my shoulder joint in my back burns

my spine hurts at times (since a week)

my hands swell from the palms..where the thumb joins the hand, and that point hurts at times..momentarily.

The doctor thinks i dont have RA..i've told him i have achy joints all of them. I've mentioned all my symptoms. But since my blood tests are all normal and no inflammation came in esr and crp tests, he believes it isnt

RA. he thinks it is some hypersensitivity of the blood vessels due to 

some unknown reason because i have a migraine history too. 

what should i do? has anyone had joint aches due to hypersensitivity? please help! 

when can i repeat my tests. I did my CRP end of november/beginning of december. and the other tests around end of the third week of november. After the tests my symptoms have become slighly more severe (my joints hurt more frequently and slightly more severely). Is it a good time for repeating ESR and CRP? 

0 likes, 12 replies

12 Replies

  • nathan72763
    nathan72763 enam999

    Posted

    It's sounds like ra to me my symptoms were as you describe.
    • enam999
      enam999 nathan72763

      Posted

      How was your disease progression. How are you fairing now?

  • slm222
    slm222 enam999

    Posted

    Hi enam999,

    Get a 2nd opinion with another Rheumy. Just because your numbers of your tests aren't high does not mean you don't have RA, and any worthy RA specialist would know this.

    However, it could also be the beginnings of Fibromyalgia as well. Do you have fatigue? I'd ask for more tests and find someone who will work with you to find out what is going on.

    Good luck and keep us posted!

  • JW89
    JW89 enam999

    Posted

    Hi - I'm fairly new on the RA road.  After about 4-5 months of increasing symptoms (the worst of them being excruciating pain in feet first thing in the morning, very stiff & painful fingers, to the point that it hurt to lift and adjust a pillow in the middle of the night), I finally when to see my GP.  Got a referral to Rheumatologist and had all sorts of the regular blood tests, ultrasound scans etc.  Nothing showed up.  My Rheumy said most consultants would tell me I don't have RA and refer me to a pain management clinic, but he said all the symptoms I relayed (regardless of negative test results) did sound like a form of RA.  He suggested giving me an intramuscular steroid shot, saying that if there was any inflammation in my body, the steroids would knock it on the head and I should fee a difference within a few days.  If the steroid shot worked, he'd be happier to start me on a gentle DMARD.  

    Well... the steroid shot really did work!  It was incredible to be pain free with no problems in any of my joints.  Fantastic!  However, it only lasted about 6 weeks and then I had to wait another 6 weeks for next Rheumy appointment whilst the steroids were wearing off.  But even after 12 weeks, the various pains were nothing like as bad as when this had all started.  Rheumy has put me on 200mg a day of Hydroxychloroquine.  I also persuaded him to give me a second steroid shot whilst waiting for the Hydroxy to kick in (takes 2-3 months).

    So, you could well have a form of RA that doesn't show up on tests.  Perhaps you could get a steroid shot to see if that helps in the short term and, if it does, it will give your Rheumy justification to start you on an RA drug.  I know the DMARDs can be pretty heavy going with all sorts of possible side effects, so there's no room to be blase and take them unless RA is truly diagnosed or at very least strongly suspected.

    Good luck!

    • enam999
      enam999 JW89

      Posted

      How is life with a DMARD, i am reluctant to start one
    • linda17563
      linda17563 JW89

      Posted

      My sister has RA, pain in the joints you mentioned, fatigue.....and very bad stiffness....she has always had zero negative blood tests, even though they say she definitely has RA, and responds to steroid injections, and now on a DMARD....she was told 30% of RA patients do not show rises in the blood tests! 
    • gillfar
      gillfar enam999

      Posted

      I   was diagnosed with RA late last year after going back and forwards to the doctor( in UK)  and being told it was a virus.  My optician picked up dry eyes which can be connected and I was referred and diagnosed.  Started on Sulfasaluzine in Nov.   Not sure its helping.  But no real problems taking it.  Made me a bit nauseas  in early days.  Deveoped huge horrible headache shortly after going up to full dose.  Dropped back down a bit for a couple of days before returning to full dose.  Problem solved.   

      back to specialist in two weeks and will probably have MTX added in.  Bit worried about this to be honest but hope it will sort symptoms as having massive effect on my life at moment.

      Good luck 

       

  • loulou282
    loulou282 enam999

    Posted

    hello anam

     the 1 thing that stuck out for me is the you didnt mention much pain!!!, the 3 main things of R/A is pain, heat and swelling, do u have slight fever? malaise?, or general feeling not well??? in my opion the inflammation and the amount of severe pain is what sticks out for me. I have had it for over 10 years, it could be all sorts of things but i think if nothing showing on lab tests can only be a good sign, i do hope for your sake it isnt R/A and wish you the best of luck with ur findings. You can put ur symptons in on line to see what it comes up with. xx 

    • enam999
      enam999 loulou282

      Posted

      How have you faired since the past 10 years. I am really scared.
    • loulou282
      loulou282 enam999

      Posted

      i started on mtx 1 year ago and slowly the dose was upped to now 25 which is max. its took this long to have some sort of normality, the last 3 years when it effected my my hands was the worst its ever been, but just recently have been really well in comparison, havet had to take morphine for a few  weeks but still take 2-4 painkillers daily but its much more manageable. i havenbt gone back to work yet  and my wrists are still quite weak and i cant lift a kettle in the mornings but im ok with that. least im not waking up in the night taking morphine, so im gonna c how i go on this dose of mtx b4 going on to biologics which i qualify for. hope this has helped but you may have a different path altogether
  • loulou282
    loulou282 enam999

    Posted

    could be fibromialgia, just typr in symptom checker or look at the arthriris website, does sound like fibro to me as nothing showing on bloods. xx
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