I finally got to see a rhuematogist after weeks on end of what i can only describe as pure hell with pain and disablement off the scale.
No treatment (bar a pkt of naproxen) and very little compassion.
Anyway.
He is testing me for scleroderma i noticed on the blood form which is very scary indeed ,
A long with more RA tests .
He also prescribed me steroids which amazingly began to give me some relief within only 2 hours of taking 15 mg.
A doctor i spoke to afterwards said my RF was one of the highest he had ever seen (go me!) lol
I have another question ?
One of the strange things that has kept happening to me ,apart from the horrible tendon /ligament pain snapping and twanging ..and birning nerve shoulder and arm pain , has been swelling and pain after having the slightest pressure on my skin or limbs.for example using the crutches one day caused my hands fingers and wrists to be extremely painful and puff up like mad the next?
Does anyone here have these odd kind of symptoms with RA ?
Thanks everyone and sorry for questions and posts its all a bit no mans land right now.
Ask away, we’ve all been in that horrid place you are in at the moment.
Yeah, I’d chose RA over scleroderma - but wait until test results are back before you fret too much. And feel positive that you are now on the track to effective treatment.
And yes, I used to come back from a walk having held a walking pole and find my fingers on that hand had turned into fat sausages... RA is a master of weird symptoms.
Thankyou again helixhelix ..i know all of you here will fully understand the anxiety or rather uncertainty of the situation.Its really rough .
Yup i am praying to the universe its not sclerederma of course ,as that is a particularly nasty disease RA seems more "hopeful" if that could even be a thing in this game.
Thats very interesting about your hands ,Its something ive found really odd and never been part of fibromyalgia for me.
Hi, with regards to swelling and pain after using hands or arms etc yes, I get this. i have to plan downtime after doing the hoovering for example as I could be in agony for several days afterwards. The joys of RA, learn to pace yourself when you can x
Hi thank-you for your reply ,and yes thats the one and oh dear
Yesterday i did some "housework" because the steroids have started to kick in slightly i felt optimistic for the first time in 2 months..i barely did anything compared to what i normaly would which isnt ever particularly over the top..i took everything extremely mindfully slowly and carefully but this morning i am paying again.
I cant believe life has come to this pretty much over night.
How on earth do we excersise like this, as its so important on so many levels but particularly for mental health?
The guilt of being so inactive is awful on top of everything else.
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Poor you stress doesn’t help the situation and while your waiting for Scleroderma test results it won’t help. Swelling oh yes I’m ok with pain but my swelling can be epic. Humidity plays a big part for me . I have just been for a walk ... well hobble is a better description... I didn’t use any aids and my hands are like puff ball mushrooms as are my feet and ankles. It doesn’t take much when your disease is active
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Poor all of us 😪 im always blown away by the courage of people on these forums though.
Yup i think stress has been a huge issue for most people these last few months hasnt it.
I remember thinking ive got to get as well as i can so as to be able to cope with it all then got struck with all this!
I relate to the hobbling btw lol
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Yes no graceful movement with this disease 😁can identify us from a mike away ..it’s all in the walk 😂
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I have been walking like a duck about to birth a giant egg ..👀
I used to be proud of my walk too 😪
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There many of us .. my husband use to call me a mountain goat. Jeez I could walk at a great spread long strides up hill and down vale. Walking holidays ... Ahh those were the days. Always wanted a dog got one last year thought this is an incentive. It is I do walk her most days just once a day that’s all🥺not the vision I had of carefree walks. Wouldn’t be with out her now.
I am sorry that you are being investigated further but do hope that you can get a diagnosis soon and treatment can start. I have RA and yes, most certainly in the early stages I had to pick and choose what task I could manage and only do it for literally minutes otherwise my hands / fingers would swell shortly afterwards and I would not be able to use them at all for at least a few hours afterwards. I would come at it from a angle of “ treat it like RSI and break down every task into little bits and keep swapping what I am doing so no repetitive task using my hands”... drove me crazy as no one job ever got finished and stuff was out all around the house 😬. I would ask for help to do the part of the task my hands wouldn’t allow me. Not my style to ask for help! Now my inflammation is well maintained I am able to do more for longer with my hands but the same basis of doing task exists as every day with RA brings you surprises! Hope you see improvements very soon.
Hello ,good morning ..yes thats exactly what i thought it was at first,it started in neck so stiff and sore ,cracking and crunching etc.. my hands and progressed into my shoulders then knees two months into lock up and i assumed the upper body stuff was RSI from constant screen time,and indeed when i stayed off the phone it would calm down.
Thats not working anymore though .
Aww bloody hell i can completely relate to what you were dealing with,so frustrating isnt it and like you, i never ask for help either..i often wonder if thats partly why im in this state in the first place tbh.
Im glad you have things a bit more controlled now ,i guess its accepting things arnt going to be how they were isnt it really..huge changes to be made .
If it’s any reassurance, testing for everything seems to be the norm: at my first appointment I was tested for all the usual RA bloods and vitamin levels etc., plus all the tests possible for autoimmune issues including lupus, scleroderma, and the genetic screen for ankylosing spondylitis, and that was after he told me he was pretty sure it’s PsA.
Hope you get sorted soon.
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Thankyou yes it is reassuring.
The rheumy said he thinks a lot of my agony is fibro related but that there is definitley something else going on but he is confused by my previous bloods results.
I already have hashimotos diagnosed privately.
So god knows whats really going on.
Just trying to get well enough to get out of the house to get more bloods done now.
Is that psoriatic arthritis?not sure if thats spelt right !
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Glad I could help 😊
Yeah, PsA is psoriatic arthritis. My diagnosis is ‘inflammatory arthritis, likely PsA’ because scans show I definitely have arthritis, but I’m completely seronegative (the norm for PsA) with a brief history of psoriasis in my early teens. Taken me over a decade to get a diagnosis because of the negative bloods, with even a rheum telling me he had no idea what could be causing my symptoms when I had all the symptoms of a major arthritic flare at the time 👀🤦♂️
I can really empathise with not knowing what’s going on: both my daughter and I like to do things the hard way, and we’ve both had things that turned out to be real head scratchers for the docs, once we managed to convince them it wasn’t depression/anxiety/psychosomatic and/or me being a neurotic dad 😂 Fingers crossed you get some answers - and relief - soon.
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Thanks charlie,now that is very interesting ..horrible for you!but interesting to me lol
I too had a brief episode of psoriasis in my teens ..i too have shown "normal" on tests in the past,untill now where ive suddenly had a RF of 224 a weak positive ANA ?I think it is? And a CRP of 27 during this agonising flare or whatever it is...(i have had mildly raised CRP several times before over the years but it goes up and down alot)
i also have gout for yonks which apparantly is unusual for a female of my age .40s
Interesting re your daughter too.
When i discovered a few months back (through my own means)that i had autoimmune thyroid antibodies i had my daughter tested too,and she also has them.
And yup like you and many of us ive also had just about every fob off going!
Makes you feel really good doesnt it 🙄
Hi bonsgirl
Sorry you are still waiting for your diagnosis. Come on here anytime and ask away, that is what this group is all about ❤️
I have RA and yes my hands swell with use. I struggle to cook, clean and have immense difficulty with walking sticks. Good idea to protect your joints and don't strain them.
I hope you get answers soon.
What happens now?
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Hi thanks so much 🥰 ..i always feel guilty.
so sorry to hear of your problems
It scares me more than the pain being immobile?I feel that its a slippery slope when you are forced to not move.
What happens now is that i have to try and get to the hospital for extra tests but thats been proving quite difficult!
Hi, so pleased you have been seen by a rheumatologist, sounds like they are being thorough too which is great.
Steroids work well for me too so am pleased that you are having some much needed relief from them.
As for the swelling of hands and fingers yep can relate so well to this. My hands and fingers swell lots with use. Hope you get sorted with your diagnosis and meds really soon and ask away. x
Yep its day 3 on them i think and seeing relief in increments ..still some way to go but so much relief already ..shame we cant stay on them forever ..
Thanks so much yup i just need to get out the house for bloods which is looking more possible now ,and im sure there will be more questions !lol
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RA seems more "hopeful" if that could even be a thing in this game.
Fallen arches/flat feet, is this common with RA? (lots more questions!)
hi guys not posted for months a question though
Hi all,i'm off to find some real sun
hi...some advice re hair loss and Methotrexate by injections
Hi to all hope all can find some pain free peace I've not been on for a while.
