hey lovelies
I’m no stranger to Raynauds but over last 2 weeks MCP joints swollen on one hand . Pinkie painful and feels like I’ve punched a wall . Currently on 5mg pred ans hydroxy . Any one relate ?
Thank you as always 😘
Ps inflammatory markers never up and no finger swelling
Dear Tiggy, you always kindly respond to my posts so I want to do the same for you if I can . I was initially misdiagnosed with RA back in 2011 due to similar symptoms. On reflection I now suspect this was start of my SSc and quite possibly Dermatomyositis - because I had red knuckles and finger joints with the pain which corresponded with Gotrun’s nodules. Also red burst capillaries started in my eyelids. The pain was very bad in wrists as well as knuckles and ditto for knees and feet a bit later on minus the swelling. It felt exactly as you describe in each hand in turn ie been in bare knuckle fight. I wore splints for ages and had help from an OT with resting splints for night time.
My GP diagnosed RA on fact it was bilateral and my inflammation markers were high and I had a mildly positive rheumatoid factor. He referred me straight to rheumatology urgently and gave me a steroid jab to tide me over while I waited. The latter was a bit of a mistake as it masked the pain and swelling when I finally got to see the rheumy, who only tested me for RA - not ANA or others such as SLE or SSc etc. So I had to wait another 4 months with what was by then roaming polyarthralgia. I never carried the CCP antibody so if I even the rheumy was right and I did have RA - it was seronegative, same as my Sjogren’s. Now I just have moderate OA in all finger joints which is sore when nodules form but otherwise my hands are just weak and tight. Not the skin so much as you’d expect with SSc but more the tendons I think. My right hand is quite ulnar drifted but I think this can happen with Lupus or other CTDs not just Rheumatoid. I guess you really need to see your rheumatologist asap but meanwhile have you tried ibuprofen gel and splinting perhaps? xx
thank you so much oldted . First off I do hope your jabs go ok … I hope the gut is ok with them .. maybe keep those marshmallows handy ? I’m normally rabbit 🐇 poop (tmi but know you’re fine with it 😉) and I did notice jabs made it looser . I don’t have stoma but had couple of resections so normally never loose . I’m sure you’re on it though and you are ready ….
Brilliant advice about the ibruprofen gel as I didn’t think of that 😁. I use a lot of deep heat on knees but I wouldn’t put it on my hands . I can see how yours would have been mis diagnosed with RA being bilateral and whilst steroid helped you it masked pain . I will send pics to rheumatologist today . I’m due to start mycophenolate or MTX soon so this might chivy things along a bit . Funny as last couple of weeks dry mouth being a lot worse too and needing more zylimelts .
You take care and love all your posts I learn so much ! xxx
Ps due to have cold stress test and nailfold capilaryoscopy in 2 weeks also test to check how blood is flowing through arms . Sure you’ve had these too ?
Thanks Tiggy. I think ibuprofen gel and splinting would definitely be warranted and hopefully help a lot while you wait to start MTX or MMF - I’m guessing MTX more likely to work for hand joint pain.
I’ll be avoiding marshmallows having had acute tummy pain before bed last night - like terrible trapped wind. So was half expecting a bag emptying night but I took a codeine and paracetamol and the pain happily eased with no “activity”! I save codeine normally just for migraine and iloprost days (these often coincide) once a month - but needs must. I think I may have a partial blockage in lower loop part of the stoma now and always need twice weekly enemas - which contain SLS like toothpaste (I’m allergic) and cause me acute local pain but are necessary evil as my rectum is still there and still needs attending to. The things they don’t explain about stomas lol! Anyway then I got up at dawn and had a tiny sip of sodium picosulphate as my stoma nurse advised me to keep switching laxatives when she phoned on Monday for review. She thinks I may have something with a long name causing the cramping and acute abdominal pain - a diversion colitis ie bowel inflammation like IBD but likely caused by scarring from the surgery. I see the consultant surgeon again next month about this.
So I do hope the vaccine centre toilets are okay if needed because I’ve only been to this particular place once during the pandemic and recall it being an old and very draughty hall! X
The stoma nurse sounds great thank goodness . But i’m so sorry you deal with so much on the bowel front and yes possible adhesions causing some inflammation for you ? I know you have no choice but to be an expert but thank goodness you are as like you say the rectum needs attending to . Hot water bottle help at all for the cramping ? Please try your best to relax tonight as today will take it out of you . Fingers crossed they have a toilet 🚽 xxxxx
Thanks so much for the very generous things you say about my posts Tiggy. Yes to having to become our own experts. And yes she’s the only colorectal nurse I really trust - the rest are various states of 🤦🏼♀️ sadly. I’ve had to try and overcome a lifetime of prudishness around 💩related issues and still find it very difficult. Especially when my rheumatologist is so lovely but not an SSc specialist, just a Lupus one. And she either knows I’m very squeamish or she is equally so because, in her letters, my gut dysmotility is only referred to obliquely as slow transit with no direct reference to my bowels at all!
I have to say that RA was a much less stressful diagnosis to deal with where both symptoms and doctors are concerned. I know of course that they have all studied general medicine but they are just human beings. And yes all human beings 💩 but there are those who choose specialise in these areas and those who choose not to! I’d definitely fall into the latter and as a patient, family member and friend, will do forever and a day. I dread having to become this bold new stoma aware person - even when required to be!! 🥴🫣👀😉xx
Ps I’m only having the flu vaccine - Covid one is pointless at this stage post Rituximab 😘
ps I’ve had 3 or 4 capillaroscopies - they are fascinating! The last one was done by Prof Denton himself and showed definitive changes of early Scleroderma. Never had a thermography test or cold stress test - photos of hands and feet during Raynaud’s attacks have sufficed! 😅
I had something similar many years ago now, post Secondary Raynaud’s but before SSc progressed.
At that time hand splints helped enormously, though I couldn’t really understand how splinting my hands and wrist could help so much. The OT I saw asked me what I did in a day that was most important to me. She went to great lengths to sort out an arrangement which allowed me to knit ( although I had to avoid yarns that enjoyed getting caught in the Velcro) .
I don’t know if this might help? x
Warm swollen hands
Swollen eyelids/Scleroderma 
Limited Scleroderma, Autoimmune issues, thymoma, metal implants in joints
Has anyone had steroid injections for finger joints?
Excercise to help joints and muscles
