Newbie-undiagnosed : Thought I would come on and say hi... - NRAS

NRAS

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Newbie-undiagnosed

PenguinLov
PenguinLov

Thought I would come on and say hi and have a nose through experiences as i don't necessarily fit the 'norm' criteria i believe?? I may have an inflammatory arthritis, i may not. Any advice or experiences greatly received :-)

so...

I have had odd joint pains dating from 2013.....

However,things seemed to progress from March this year as I have had continuous but migrating joint pain, with no pain free days. First, my fingers swelled and were stiff and painful in the mornings and evenings after sitting and relaxing. This lasted for 14 weeks alongside pain either in my achilles, left elbow, knees and hips and right shoulder. All bloods are negative but I had an appointment with a rheumy who told me that 3% of people can have inflammation without the bloods being positive. The only positive I had was a slightly raised RF 1/80. He asked me to trial Kenlog 80mg intramuscular injection beginning of Sept to determine that if it worked that it would point to an inflammatory arthritis. I'm not sure how long it was supposed to last for or take to work, I forgot to ask! But after 6 days my flare that I had in my shoulder when seeing him had gone. I was pain free getting up in the morning with my achilles and ankles- it was amazing to feel 'normal' again! Fastforward 3 weeks and here I am now....... achilles, ankles, hip and shoulder on the beginning of a flare.

So i wonder if it is RA at all or should the injection have lasted for longer if it was? I have next rheumy in Dec, so until then it looks like I'm back to being in pain again :-(

21 Replies

Hello, and welcome. We're not doctors, but what you describe fits into the normal experiences here. Sure the books say it starts with hands and feet, and is symmetrical, and maybe that's the majority. But there's certainly a large majority of people who don't start that way.

However great that your doctor wanted to try steroids as a diagnostic, lots don't and just leave you in pain. For me they last 6 weeks on average, but it varies and some people only get a couple of weeks relief. If steroids do work for you, then you could ask your GP for prescription strength anti-inflammatorys to tide you over until next appointment with rheum? If you do get them, stop them 5 days or so before appointment so rheum has the unvarnished view of your joints.

pauluk60
pauluk60 in reply to helixhelix

now thats good ADVICE not opinionated as i "LIKE"to ask what about tum with strong anti inflammatorys and if "chatting" what are they

PenguinLov
PenguinLov in reply to pauluk60

I have omeprazole to take once a day when I'm taking strong anti inflammatories

pauluk60
pauluk60 in reply to PenguinLov

i have taken omaprozole it does work but off to private hospital friday 3/4 being icky/sick daily 3 endoscopes one up nose and they talking about bottom end but we will leave it unless necessary probing and poking can get you BROWNED off wife says i need that white stuff drink it and they watch throat i think but all the "EXPERTS" keep coming and going and failing again you may think i don't "LIKE" I don't "LIKE" if they don't listen to obvious PUT ME on day ward video me and something to EAT AND DRINKi wont be in for an hour or if they they want brecky dinner but wont listen sos pen for going on

Hi PenguinLov, sorry to hear you are in this state of pain & unknowing. When I was diagnosed my ESR and CRP levels were raised and the anti-CCP blood test was positive which was the RA decider for my rheumatologist. I was given the same steroid shot as you and it was very effective for about one month, then everything came back. It seems to vary a lot how long the steroid shot lasts but I have had 3 now and 3rd one kept going for about 8 weeks.

December is a quite a long time to wait. Maybe taking NSAIDS would help get you through. Good luck.

pauluk60
pauluk60 in reply to roseyx

similar here when i got it my swollen lower leg shrank but left knee crunchy crunchy so i won some lost some i think the swelling seem to support joint will try it again if needs but not sold on it

Have you tried to make any dietary changes?

Look also at psoriatic arthritis - it too fits

PenguinLov
PenguinLov in reply to Artroc56

Thank you I will take a look, I haven't thought of this x

pauluk60
pauluk60 in reply to Artroc56

i will have to look that up myself artroc got psoriasis

I would contact your rheumatology department as waiting for appointment in December is a long time to wait.

I haven't heard of the injection you had so can't give you any advice/information

hi Matilda i am same but if what i tell about my condition and they say nothing there again well there will a few choice words 10 yrs i have my doc telling me not bother rheumy asi have not got it from his blood tests well i normally use strong throughout the day trying to move they WILL get some i always seem to the worst but was gob smacked at appointment lasted approx 30 mins no bloods xrays whatever no was the answer well that last do i had if it could have BEEN eased been by whatever tabs i would have got I SHOULD HAVE THEM this as gone on to long would you say and i WILL have to stop being "mr nice guy" AND STOP LISTENING TO EXPERTS 10YRS to long

Hidden
Hidden

Really sorry to hear that. Have they given you rheumatology advice line number/email yet? I would ring them, hopefully get another shot to tide you over till December x

I have no inflammitory blood markers and waited for almost a year for a diagnosis and treatment. My symptoms eere similiar to what you describe. During this time my hands deteriorated rapidly.

My advice would be to contact rheumatology and ask to be seen sooner. Or visit your GP and ask them to cintact rheumatology.

pauluk60
pauluk60 in reply to Mmrr

thats is what i seem have as all over pain lock ups besides joint pain but that not for me to diagnose but left EXPERTS

Thank you all so much for your replies! I have a main number to rheumatology that I could perhaps ring?? However in the past, that is all it seems to do-ring.

roseyx - I do have 600mg ibuprofen and a 10% ibuprofen gel which does bring if only a liitle relief to tide me over til then.

alexask - this is all new to me- should I be making dietary changes? If so, what kind??

helixhelix it's nice to know (not nice for everyone to be going through) but that not everyone fits the 'norm' all the time.

I'm still in 2 minds as to whether it is it or not as I have read that joints get red and hot- mine don't, and mine don't always swell. My fingers were remarkably noticeable as I also had to keep my wedding rings off for 3/4 months until they could go back on without me panicking about getting them off if I needed to! And my ankles did also swell for 8 weeks. But this is the only swelling I have had- the rest is all joint pain and/or feels like tendons possibly?? Definitely my Achilles as one but I'm unsure of the rest.

I feel lucky after reading through other posts that he was willing to try me on a steroid injection straight away- I'm keeping a diary of when pain went and returned, hoping this will help him in the direction of whatever is wrong!

As I'm not in agonising pain, I will try to hold off til Dec but if it gets worse as it sometimes does, then I will be sure to try and get into contact with him sooner.

Thank you so much again, I feel so much better after stumbling across this site last night!

xx

Mmrr
Mmrr in reply to PenguinLov

My joints don't always get red or swollen and generally are not that painful...it's the stiffness and the heat, and the systemic problems ...brain fog, exhaustion, continual flu like symptoms.

One thing about this disease it that affects everyone differently

PenguinLov
PenguinLov in reply to Mmrr

I get brain fog- only sometimes, I've only had exhaustion once that lasted 2 weeks- which I think I went through the motions of everyday life and couldn't wait to put the kids in bed so I could go too! I think the rest is general tiredness- I have an underactive thyroid(stable at mo) and 4 children so it's kind of the norm for me at this time in my life but I can and do manage to keep going. Also, I don't ever feel ill either, unless I actually am coming down with something. My weight has remained stable and I've seen that weight loss is common??

So many things and how I feel could be and couldn't be I suppose, although I find it strange I did get significant relief for 3 weeks with the IM steroid injection and now I can feel niggling pains threatening to flare again. Sometimes they remain mild and niggly, other times they can be agonising and wake me up up to 6 times a night- not ideal. None of us have time for illness really do we?? ;-)

Thank u for your reply, I'm trying to live and learn and possibly try and accept what it could be in case that's what I may be possibly told x

hi penguin i am similar to you not diagnosed had a flare lasting 10 days approx docs giving me tabs galore changing them till dizzy with it but thats not helping you The main thing at the moment is i desperately trying to loose weight for op if poss so the side effect is my arthritis is cooling down STILL there but eased dramatically so much i can standup and walk to kitchen with not to much trouble a few side steps but at least mobile that being locked to chair was making want to scream so i have lost a bit but there are many more BITS to go i have insane ideas but this as worked so far as i don't know your weight best to check it out with peeps who look after you but it only took a couple days to notice the difference i have been used to loosing weight over many years and b4 arthritis reared up so i suppose i am used to it not easy for some but when i get in the swing of it i enjoy the challenge and tone up well wife hates me loosing weight but shes got a chance i might crack up not easy now with lack of physical movement and YOU MAKE SURE YOU DONT MAKE THINGS WORSE thinking penguin refers to shape maybe apoloygise if wrong paulNOLIKESuk60

PenguinLov
PenguinLov in reply to pauluk60

Hey thanks for your reply. No mine isn't due to my weight as I've always been quite naturally slim but every little information helps- I just like penguins lol.

pauluk60
pauluk60 in reply to PenguinLov

i was not saying due to weight more to dietary /food seems to cause probs but reading about kids i dont think you need any exercise hope you have plenty help but i would for my own benefit if food changes could help whether mine came from weight working in mines playing rugby running or walking milesssssssssssssss with butch alf sam jess all collie dogs shame got the all from pups one was kamikazi chased a train for what reason well guess to upsetting with son at time so we went and got him end of the other loved stones 3 x vets end of the other get and sit in middle of main road police came well had to let to rescue hope he was ok last one lived a happy dogs life swimming r.Irwell in flood )or the luck of the draw did you ask about inflamatory gels my doc swears by voltoral not sure whether i can post itt i use to keep him happy i am not sure it does anything bar make drug company now joints dont go red so i infared laser heat gun bought for test hot spots in machines i worked on told you whether parts getting HOT cost 6 to 8 pounds on ebay worth every penny pen and does more than gel hubby mite have one i now use my joints but of fun to do hay fellow peeps paulnomatesuk60

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