Scleroderma & Raynaud's UK (SRUK)

am i finding a pattern to this?

hi all, i have secondary raynauds,and so far we dont know what else is going on.Ive been suffering with swollen joints on all my fingers these last few weeks and feel really run down,also noticed lumps on my kuckles 2 on left hand and 1 on right

i notice now that if theres something exciting coming up like a birthday or a trip,my body will do all it can to ruin it!!

it was my mum and dads joint birthday party,wasnt 100% anyway so after having a shower i had all pain shooting up and dowm my right leg and in my foot,it kinda went into i have no feeling in my toes and cannot move them.ive lost feeling and movement.any ideas??

i called rhemy nurse as my app isnt till march,you can wait up to 2 days for them to get back to you so made an emergency app with gp,while i was in there she had phoned damm id missed it, she said on the message she would try me again later but never did,gp didnt do anything cause im under rhemuy said i need to see them

while laying on the bed pushing my feet downwards left foot will go down quite nicely all toes pointing forward,rigth foot wont go down as far and toes not really moving and kinda all bent under,i can make a nice circle movement with my left foot,its more of a dodgy square movement with my right,with tingling dead feeling coming and going and pain in my ankle.

anyway im finding theres a pattern to this as theres been lots of times something awful happens when theres something big in my life happening, a few example i can think nephews engagement, was just going to start getting ready had my clothes all ready and bang i was dizzy, felt sick it felt like somethig sucked all the energy out of my body all aches and pains and all i could do was lay down in bed,so could go

at the airport going on holiday same thing and i was sick as a dog had to drag myself through the airport to get on the plane,i wasnt going to miss this holiday then got bitten by mossies and had a massive reaction to the bites they all swelled up and got infected,had to call out local dr,he asked had i been in the desert cause he not seen anything like, i hadnt.

booked a little weekend away,day before had terrible ibs pain like never before, i do suffer with stomach issues anyway but this was sooo bad i suffered all weekend!!

thats just a few,theres been more nights out that ive missed and it seems to come on me all of a sudden so my question is does anyone else suffer this?? i dont want to get excited about anything now,booooo

thanks for any replies hope all is well

6 Replies

Sorry I can't help. Best wishes.


Have you tried altering your diet to help your stomach issues and your other symptoms? Have a look at paleomom website for information about how diet / stomach issues and autoimmune disease are all related. You may have some food intolerances. Gluten and dairy are often common ones. Please look into it. It may help you a lot. Also stress can be a big factor in triggering symptoms which may explain why you are worse when big events are happening. Good luck.


I don't know about your foot, but I recognise the energy sucked out feeling, and that it's not about physical effort necessarily. Special occasions are a huge drain, which is not understood by the kindly organisers!

I hope things improve for you soon.


I was previously diagnosed with RA and had very similar symptoms in my hands - Rheumatoid nodules with synovitis. Raynauds started around same time - since rediagnosed as small fibre neuropathy as part of Sjögren's Syndrome - another autoimmune disease which is my only definitive connective tissue disease at present. Not yet sure whether it's primary or not.

To be honest all autoimmune diseases often flare in response to stress - even primary Raynauds is often triggered by stress. RA certainly is and so is Sjögren's. All connective tissue diseases can cause nasty gastritis/ reflux and IBS.

Hang in there because they need to work out what your primary disease is if your Raynauds is secondary. Hopefully your new symptoms will help get you a more definitive diagnosis. Be sure to take photos of any swollen joints in case it's gone by the time you see your rheumatologist.


You seriously need a reputable Dr. well-versed not only in,rheumatology but neurology as well. You have a vast array of symptoms which maybe more than one thing going on. You need to make it apparent you need to be seen NOW !!! Good luck, those are some tough symptoms to get through.


thank you all for your replys, gp sent me for more bloods so we will see if anything shows up,im going in for iloprost infusion on 27 feb so hopfully that will give me some relief and i have app with rhumy on 8 march so we will see.when i first went to rheumatology she wanted me to see gastro because i was losing so much weight and ibs for a colonoscopy but gastro done bloods all were ok,no gluten intolerance so he discharged me,it felt like because of my age 38 there couldnt possibly be anything that serious wrong,so no better!!

it says in my letters Diagnosis: secondary raynauds phenomenon( ana positive and abnormal capillaroscopy),restricted defect with reduced diffusion capacity on lung fuction tests but normal HRCT,normal echo,vit d insuffiency. nothing else has come up in bloods so just left hanging.

i stopped all meds last april because they wasnt helping my stomach at all, and since then ive slowly started to put weight on and cramps,slow digestion and all have eased so not wanting to start them again incase it all starts again,stomach very sensitive.

so thank you all for listening. best wishes to you


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