I wonder if you lovely lot can help? I'm not asking for medical advice or a diagnosis, i'm simply wanting to know if anyone else recognises the symptoms below or has any other condition which might be a possible fit for the below list of symptoms.
If you recognise the following and can suggest a condition for me to find out more about, then please do. Lyme disease has already been ruled out with a blood test. I am negative for the RF and am currently waiting on results for anti CCP.
Prior to my snowboarding accident in January, I'd never experienced any of the following symptoms. A GP originally thought I was having a touch of reactive arthritis. After symptoms persisted, 2 other GPs both suggested RA and I was then referred.
• Stiff, aching, audibly clicking joints that often feel like they are 'stuck' in place
• Pain in both wrists and fingers that makes typing, writing etc. hard
• Loss of strength in hands, can't open lids, carry shopping bags, drive some days
• Painful, stiff, clicking ankles
• Large red inflamed puffy lumps on ankle bone and around ankle
• Pain in feet and toes which makes standing or walking for more than a few minutes very painful
• Joint swelling in fingers (that comes & goes) makes it hard to bend fingers, make a fist, can't wear rings
• Cramp like sensations in wrists, elbows, feet and ankles
• Visible swelling responded well to a course of steroids
• Pain started in wrists (noticed when typing at work) but over the last 7 months, now affects my fingers, ankles, feet, knees and elbows
• Granny had Rheumatism and Spondylosis, mum has osteoarthritis
In light of the above, the rheumatolgist last week concluded that I have Fibromyalgia, which I am not entirely satisfied with.
I would love to hear your thoughts. [I've also posted the same on the Fibro community here]
Written by
ShellyWelly
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Maybe sero negative RA? Sounds like it to me. I was originally diagnosed with that then revised to PsA although don't have psoriasis. Have you taken photographs of your hands when swollen? Always a good idea as they often aren't swollen when you see the rheumatologist. Good luck, Clemmie
Yes I have taken pictures, but the Rheumotolgist didn't want to know. He said it was just soft tissue swelling, despite the triage Dr and my GP both telling me it was important I show the pictures to the Rheumatologist. My friend is a GP and is convinced it is seronegative RA.
I also think sero neg RD and I think conclusion of fibro is probably right. I have all of the same symptoms and was diagnosed in March 2014 with Fibromyalgia and when theye rheumatologist did a scan she saw the synovitis and said I had sero neg RD. I also have osteo which I have had in my knees for about 4 years but rheumy also confirmed now in hands and feet. I am also on both communities and have learnt a lot and had a lot of support on these sites. Gentle hugs Joolz.x
Thanks Flossyjoolz - can I ask do you have any of the other Fibro symptoms or just the above? x
Hi Shelly The list is quite long. I have Tinitus, jaw clicks with sometimes pain, blurred eyes, both hands swollen painful and wrists stiff and painful (cant make a fist and drop things all the time)both feet swollen and painful and stiff with cramps in toes and hot balls of feet, I have general unwell feeling and fatigue most of the time and tiredness which comes over like a wave (I fell asleep on the breakfast table yesterday). Brain fog and I really have to concentrate when doing anything especially writing as I keep writing words wrong. I used to be quite a fast typist but not now. Both knees are shot and I find walking and standing difficult (they are osteo with no cartlidge left) I am unable to lose weight and this has / is increased. I get nausea, and lack of appetite. I have achilles problems too. I cant think of anything else and sure Ive missed something out but this is enough. OMG put me down now! Hugs Joolz.x
My symptoms sound fairly similar and came on virtually overnight whilst I was away on holiday. With me it was ankles and knees first. GP thought it was reactive arthritis as my RF was negative and CRP raised but not really high. Initially my consultant thought the same. I go out geocaching quite a bit and have had a couple of nasty bites so had a Lyme test which was negative.
Anti CCP came back high at 184 which was the real indicator. Think once you get the Anti CCP results back then it should show either way. Cut off for Anti CCP as an indicator is over 30 I think.
Thanks Mike, that's really interesting to hear. I was really hoping it was Lyme disease early on as it meant easy treatment. I camp a lot and even still have a scar from when I had a nasty bite around this time last year and we often camp near sheep so I was convinced it would come back positive, but it didn't.
I think i've resigned myself to the probability that the anti CCP will be negative also and that i'll fall into that 20% who have both negative RF and negative anti CCP and as such either get misdagnosed or fobbed off with something for which there is no help for. Grrrr and 3 months until I get the results back which apparently are going straight back to the consultant I have requested I don't see again so goodness knows when i'll find out.
ps. I've got a few friends at LARP who are big geocache fans and I was reading up on it recently, sounds like something I think i'd quite enjoy - appeals to my geeky side!
Three months to get the results! I had my test done on the NHS and my GP had results back within a week. He couldn't do the diagnosis but showed me the results and I could read between the lines of what he said. I would ask for the results from your GP or who ever did the test about a week after the test was done. If the consultant can access them then I would hope your GP could.
Geocaching is great. Has the geeky nerdy (as my sister calls me) of the computer side for giving the clues and logging of caches plus loads of stats on finds per day (although some cachers do take the stats to a level I could never attain) etc. The other side is that it's has a real world element of go out and find it and I've been to woods, parks and even local footpaths I never knew existed.
Absurb isn't it? The Rheumatologist ordered the results, so they will go back to him and not my GP (unless they get logged in my records by whoever does the blood test??) but I was told the anti-CCP blood test alone would take 5-6 weeks.
I was told i'd see the rheumatologist in 3 months time, but i've not received an appointment through or any further information as yet.
I managed to get an appointment with my GP next Monday, so i'll ask him then if he will have access to the results. I still don't understand why it's going to take 5-6 weeks for results, but hopefully my GP will have access to them so I won't have to wait 3 months until I see the Rheumatologist.
Who knows!
I could see me getting obsessed with Geocaching if I started, so I daren't!! lol no gaps/time in my life for anything else at the moment, but never say never!!
I think PsA is worth considering. Many find that trauma seems to be a trigger e.g. accidents, surgery, stress. But the physical traumas seem to loom large in many peoples' accounts. How are your nails, incidentally? Many people with PsA don't currently have skin disease, some develop it after the arthritis. But the statistics are something along the lines of 80% of PsA patients showing nail changes. Any even slightly dodgy nails are worth documenting.
My R.A started from a car accident in 2000 and I had symptoms like yours for 18months before a diagnosis was finally made. The anti-ccp will be a good marker, this test didn't exist 14 years ago. Also what is your CRP reading? You could also ask for an ultra sound scan on your hands to assess your inflammation. It must be so frustrating for you not knowing what is wrong. You will need to keep pushing the medics to get a diagnosis because if it is R.A you need to start medication, to ensure a better outcome. Sending you best wishes.
Sorry to hear about your car accident, but glad you are here to tell the tale. I don't know what a CRP reading is, or if it has been checked.
Compared to 3 months ago, the inflamation has gone down loads. I've been on NSAIDs for months and had a course of steroids which has helped the visible swelling, but not changed the pain, i'm guessing that a scan now would show nothing? I'll ask my GP when I see him next week anyway - thank you xx
I have RD, OA & CS & recognise all of the symptoms you describe though do have more. I was fortunate in that I saw my GP early & was diagnosed within 2 weeks seropositive so cut & dried typical RD.
One thing occurred to me from your last reply. Did you not or did your GP not suggest withdrawing all meds prescribed for your symptoms for the period leading up to your Rheumy appointment. My GP suggested I did this when attending a diagnostic clinic (not in the UK) to give my system chance to be clear of any anti inflammatory meds masking swelling & influencing blood results. It's important to have a good baseline of bloods for a Rheumy to use as part of his diagnosis as some of the ones requested are an indicator of inflammation. If you still had them in your body this wouldn't be the case.
I've been on my mix for 6 years & controlled when on them but when I took no meds at all for 3 months last year my joints were very swollen & had to have my wedding ring cut off as it was cutting off the blood supply to my finger.
Hi no my GP didn't suggest this, and I didn't think to do it because i'd read that a diagnosis took into account reported symptoms and not just symptoms on the day. My GP was aware of my appointment last week and prescribed me a course of steroids 3 days prior to my appointment which had a dramatic effect on visible inflammation.
What you say makes a lot of sense, but I was in too much pain to want to delay starting the steroids though in hindsight I wish I had thought of that
I've just received some paperwork following my Rheumatologist appointment last week which states (which is news to me) that he suspects that I have Palendromic Rheumatism, and not RA. Blood tests i've had so far are all negative, though i'm still waiting on some results.
Very sorry to hear you had to have your wedding ring cut off, how upsetting May I ask what CS is please? Sorry, very new to this so am not familiar with many abbreviations, though i'm guessing that OA is osteoarthritis.
Palendromic arthritis went through my mind but as it's difficult to diagnose generally I though best not to mention it as I thought it of little help throwing something else into the mix before further test were done by whoever you choose to see. What made me think along this line is when you let us know you were feeling better & your ability to swim distance & one or two other things which I wouldn't have been able to even contemplate doing pre diagnosis even though I was reasonably fit. My niece has had the same condition confirmed after a speight of release since JRA abated (Juvenile RA), returning in this form since the birth of her first child. If not seen during a flare it's even harder to diagnose & I would hope no Rheumy of any worth would diagnose without this or other evidence to back up his diagnosis. I would think any testing, including xrays, ultrasounds etc would have to be performed during flare also otherwise nothing would necessarily show to confirm.
CS is cervical spondylosis. You'll get used to the abbreviations & it was even more upsetting as both our rings were modelled out of my mums, nans & my h's grandmothers rings melted down & making our two. Now I have a random piece of 24ct in there but it was necessary & I'm over it now. At least my h's is complete, I have my finger & my large RD/OA knuckle keeps it on!
Thank you so much for letting me know all that. One of the good things is that whilst I will usually be bad for up to 3 weeks at a time, I will then typically go a few days feeling much better. It feels like a better fit that I'm much more content to accept to be honest and makes me very lucky if so, due to lack of permanent damage and the periods of reprieve.
Bet the ring was hard to get over at the time, that's such a shame Thanks again for your comments and help xx
Two rheumy's tell me they think I have Palindromic. I have most of your symptoms. Blood work all fine. They've tested me for pretty much everything. Even when I have very visible inflammation bloods show nothing. I have similar symptoms. There are 2 forums on Facebook for Pallindromic Rheumatism. I've discovered after a few posts that most of my symptoms fit into the PR category. You might want to post your symptoms there as well. Your symptoms do sound a lot like PR.
HI Shelley Welly, I have a lot of the symptoms you have listed but was not diagnosed or treated for RA until I had a positive anti ccp test (300). In a way it was a relief to get this as I felt I was going mad with such bad pain but no firm diagnosis. I totally understand how frustrated you must be feeling. I am shocked that the results will take 3 months mine were back within a week too. Good luck with it and let us know when you get your results. xx
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In hope of getting advice on RA symptoms 
Not the norm RA symptoms, is anyone else experiencing the same?
Getting massively stressed about my rheumy appointment on Tuesday :(
What shape os your RD?
