possible ra long post with a few questions pls help

Posted , 7 users are following.

Hi everyone,

just looking a bit of advice really, i have had ankle pain for about 4 years now general stiffness when i sit still even for a few minutes and i have to unlock them and its a very loud painfull crack, mornings are worse and i have ingnored it, then same happened with jaw dentist noticed i could not open my mouth fully once again locking and painful clicking for years, xray on jaw showed bone eroison and mri was ordered ( awaiting results), then the worset pain of my life started about 3 months ago ankles got so bad they swelled and were red and my pinky toe and big toe on left foot so bad i could not bare weight on it, same with other foot just not as bad, then 1 week later waking up with hands like claws, knuckles swollen and red and unable to use thumbs, wrists ached and right knee started to lock then swell and very painfull, now other knee is starting to click, shoulders are achey nothing major but annoying,

I made appoinment with my gp who saw for her self the swelling and heard the clicking and straight away ordered bloods and xrays of feet and ankles and said it looks like you have rhuematoid arthritis(ok now iv never heard of that i am 30 yrs old and never broke a bone so am somewhat confussed), gave me naproxin and codine, just got bloods back and all clear no inflamation ect, ok so now im more confussed still waiting on xray results though,

Then this where it gets even more confusing it went away for 1 whole week nothing no swelling only stiff when i sat to long and needed to unlock myself just like before all this strange pain and swelling though now my hand are like claws all the time when i wake, then all pain and swelling came back and last only 2 days then went away again only to be left with a sharp pain in my foot just before the wee toe and ofcourse the claw hands in the morning and ankles and now knee locking every morning to the point i waddle like a duck for ages before i seam to unfold but no swelling or major pain.

So will get to my question has anyone had systoms like this and went away again with neg blood tests im so confussed, i dont care what it is i just want it go away and stay away, as i am very active also to add the first swelling lasted for 2 months and durning that time my chest hurt like mad when i twisted r anything, its been 6 days now with no swelling and pain and hopefully thats it away but im worried about it coming back as im alway stiff, anyone know what this is docs are not concerned as neg blood tests,

Has this happened anyone else ??? And what is the cause?

If you have managed to get this far thankyou so much for reading and not falling asleep and please please help

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11 Replies

  • Posted

    My gosh Sarah!

    Nothing quite like my symptoms of RA except my hands and forearms felt a lot like your description. But not the rest. It's been about five years and doing well with meds.

    There's some really smart folks with a lot of different symptoms on here so read other posts as well. But all of us are different so don't let your dr or yourself get pigeonholed.

    Sorry can't help much. But I would like to know where you went away for a week- I'd like to go there too.

    Best to you

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    • Posted

      Thankyou for your reply hope you continue to feel better with meds.

      That week was pure heaven maybe the naproxen helped.

      Maybe it is just a one off or something as i was freezing durning that time an felt horrible and exhausted on top of not being able to get up the stairs or even hold the hairdryer but if it happens like that again i will refuse to leave docs untill they work it out as was the worst couple of months ever atm im in bed and my ankles are starting to lock again with achy feeling but im used to it just seams to be the norm for me this last few yrs,

      Did your bloods come back pos when you first went to doc 5 yrs ago or is that something that happens later if u dont mind me asking?

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    • Posted

      Not at all, my RF was actually high but my dr didn't send it or it didn't get to the rheumatologist so I went to a different one and that one figured it out. (The one time I didn't get a copy of my labs)

      I've not been very typical in my symptoms and find everyone has differing results with meds.

      I didn't respond so well to Mtx and have been on Enbrel for several months and very happy.

      Five years or so into this and expect something new every few months. Still working and pretty active so I'm hopeful.

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    • Posted

      It took 18 months of bizarre symptoms until I was diagnosed. Various blood tests came back showing slightly raised numbers but the Dr said they weren't significant. I ended up with an anti-cccp test for RA and it was positive. Started treatment and my symptoms went away. Keep at the Dr until you get an answer!!
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  • Posted

    Hi! I am NEW on this forum, however I was diagnosed with RA in 1997. S simple blood test by family doc. found my RA.you might want to refer to a bone and joint Dr, or maybe a rheumatologist. Your symptoms describe any thing from Rocky Mountain Spotted Tic bite to side effects if street drugs. I think it's hard to miss RA, Lupus, Gout, (autoimmune diseases) with a blood test. Good luck
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    • Posted

      Hi thanks for reply im totally new here aswell, i dont do street drugs at all, though im a regluar hiker at 1st thought i had over done it in the hills durning the spring untill july when i couldnt walk around a small lake on a family camping trip and it all went down hill from there really, if it dosent take off the way it did the last few months i will put it down to a viris or something and hopefully thats the end of it, i will add i get renal colic and have had 2 stones this year already so more blood work on fri, though might i say even though 2 stones where seen on ct scan and lots of blood in urine, inflamation markers where still normal on blood work, the bloods this week are just a follow up to the stones to check calicum and uric acid and a few others and nothing to do with joints, so dont think its linked
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  • Posted

    So sorry to hear what you are going through. I have rheumatoid arthritis and I can understand why your gp suspected that as the pain' stiffness and swelling in joints is what I have, including the arbitrary way the pain moves to different joints.. I am surprised your blood results did not show inflammation' unless you had them done when your symptoms weren't t active.  

    Dont battle on in pain though. If it comes back maybe ask your gp for a referral to a rheumatologist anyway as they are the experts on diagnosis. 

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    • Posted

      Thanks for your reply if it comes back in full force like i was i will for sure be asking to be sent on to someone who knows, i couldnt get my bloods done the same day was with doc my clinic is very strange if a doc orders bloods you dont get them right away its usually a week after because need another appointment with nurse and by that time it was tapering off and i understand everyones inflamatories are different anyway,

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  • Posted

    Hi Sarah , you're really going thru it. Couple of good replies going on to ur post, my experience due to the onset of ra is dissimilar to wot ur experiencing. As well as pain and obvious inflammation I felt really unwell and had a constant low fever similar to flulike symptoms. My hands and feet were the first places to get pain then the back of my heel then shoulders wrists and knees but the onset lasted for a yr. I had blogs and was referred to a rheumatologist and diagnosed within 3 months. I can't understand how ur inflammation markers didn't show anything, could u ask them to repeat the bloods? I can only sympathise with wot ur experiencing and can fully understand u need an answer. Please let us know of any further developments. I hope they find its not ra and that u feel much better soon.

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    • Posted

      Hi gemma thanks for replying i also during that time had mild fever and exhausted it was summer and i was freezing with heat on full in house with blankets wraped round me and shivering which is why i thought a viris, im praying its not ra but just found out last night my mum has it she 55 and it only started a few years ago with her docs didnt know what is was it started with her shoulder and thumbs and has now had surgery to replace shoulder and waiting on hand op ( not really in much contact with mum) so dont talk about health when we are in touch, also on my dads side my great gran and aunty had it onset was late 40s i think

      Also id like to add when it comes to inflamatory markers i dont trust them as my partner has crohns disese and was running to gp for years and got blood took was told normal so was told ibs untill his bowel ruptured and had 4 fistulas going to spine pelvis and liver and lost control of body fuctions and legs still bloods where normal and told sliped disk 2 weeks later finally showd a raise in inflamatory marks and high white cell count only then did he get put in hospital when too late ended up in major surgery a stoma bag for a year 7 weeks in hosp a spine op and 2 weeks of that fighting for his life in icu so i have no faith in the docs here,

      If it comes back i will be going all guns blazing as its on both sides of family i have just learned and in light of what happened my partner it seams you really need to push hard with the docs here

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    • Posted

      Hi Sarah

      I hope it s not , but what you say about your family history does point to the possibility of RA and if it is , it s a great shock and adjustment . But one thing you should know is that recent development in biologic drugs has made a huge difference to outcome . Gp s should be doing early referral and consultants are committed to early diagnosis and aggressive treatment leading to a much improved outcomes , even compared to 10 years ago. So keep positive but go down a gear and try to get plenty of sleep when you are not feeling well.

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