I got diagnosed by my GP with Reynauds a few years back due to presenting with sore hands caused by the cold. I have had no tests yet just put up with it as it was bareable.
In the last few months everything has got much worse! I keep getting sores on my right hand fingers. Also getting chilblains, which are getting infected. I work at a desk all day, exercise regularly a and have limited caffeine.
I am struggling with the pain and how debilitating it is getting 😪
The GP hasn't been very helpful to be honest. I really don't want to go on medication as I also suffer from migraines and know that one of the main side effects are headaches and low blood pressure and my blood pressure is already on the low side.
I am just looking for insight and advice from people who suffer.
I have a GP appointment this afternoon and I am going to ask for a referral to ruemotology and ask for more tests.
Is there anything specific I should be asking for,
Thanks 😊
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LozzaPurple05
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I started off with white hands etc which then progressed to chilblains and ulcers. Basically it got worse abd other symptoms emerged. Been with rheumatology for four years so that would seem to be a good next move for you.
I hope you get your referral to see the Rheumatologist, do you have another symptoms apart from Raynauds related?
I take Omacor , omega 3 , 4 capsules a day 4000mg as advised by the Royal Free hospital nurse for Raynauds. But I am also on Losartan 75mg for BP although mine wasn’t really high but I have mild heart disease so it was really prescribed for that but last time I saw the Rheumatologist nurse she said that may help with the Raynauds too.
But if you are looking for something more natural, you could try the omega 3.
Your condition is clearly causing more pain/discomfort as time moves on!I think you're doing the right thing by asking for a referral to a rheumatologist.
My understanding is that if Raynaud's symptoms begin later in life, i.e. as an adult rather than as a child it may be linked to another disease.
A rheumatologist as a specialist in this discipline will provide further testing as required and identify any connected medical concerns.
No it's not raynauds IMHO (I've had severe raynauds since my teens, so it's only my very experienced opinion, of course). BUT it does look like the precursor to when I got diagnosed with SLE (lupus), especially the second photo..
What are your bloods? CRP, ESR, neutrophils, complement 3 and 4, ANA, and all the plethora of antibodies? If they've not done them, you might have only a few of the bloods the GP will do, but if you have neutropenia and low complement and wotnot, then they can refer you. What are your other symptoms? Take photos of everything and keep them in an album on your phone to use for all appts.
Are the lesions burning? Mine felt like someone had put a cigarette out on them. Were you cold around the time of those lesions? Was it the cold snaps we've been having and do you manage to keep your hands v v warm? Have you been through the white blue red scenario prior, lots? Are you on nifedipine or similar to get your blood to your extremities?
Get them to do all the tests I mentioned and all the others they should.. and if they are indicative of the need, absolutely a referral to rheumatology. They aren't always on the same page, and it's not a pure science in my experience... however I have met "purist" rheumatologists who have messed around with my diagnoses to the point of a lot of upset, so you need to be your own "expert patient", and I have the feeling you will be just that ;). Get your bloods done and ensure you are signed up to the Patientsknowbest.com website (NHS) where you can keep a very close eye on your test results (even before the GP and docs are in touch with you, so prepare yourself) and how they change etc (great visuals with graphs etc), and also if you haven't already, ask your gp surgery for the access to your medical records - you just have to ask them for the form to fill in and then they give you a password which you use to sign in (NHS of course) and then you change it immediately you go in, to something you'll remember or do the finger touch log in etc.. although I have to say the raynauds and my dreadful skin peeling on finger tips despite all I do can really mess with that! Then you'll be able to see all your bloods, your letters back and forth, referrals etc.
Keep us posted?
Best of luck and, yep, do all your research ie relevant med papers - and check related images etc... getting your ducks in a row for these appointments is key.. as, if like me you have brain fog too, you can kick yourself for not asking questions or knowing more about some of your symptoms going in.
Thank you!This is exactly what I was looking for, lots of information to fuel me to fight with them, because I know i will have a fight on my hands (pardon the pun ☺️) i very nearly got pammed off again yesterday by the GP, saying there's nothing they can do and I need to keep my hands warm.
Never asked about my diet, whether I smoke, exercise etc
I demanded bloods be done so getting them taken on Wednesday.
Outrageous! I wrote to another person on the site earlier - completely different disease - but he also had appalling GP support.. similar! Did you discuss which bloods they're going to do?
I didn't ask, due to me being a bit angry with him for dismissing the fact that I am on forums speaking to real people that are suffering from similar symptoms, he basically scoffed at me!I will ask the nurse when I am in for bloods on Wednesday and if it isn't the right tests I will demand them 🙂
Er, he needs a word.............. If this continues I would be extremely clear with him about his role and yours and that expert patients are so becuase they LIVE with the conditions, and this website is linked to specialist associations such as `lupus UK and the Scleroderma and Raynauds one.. and so you are doing the most sensible and intelligent thing you can by discussing with other patients.. If he continues to behave like this I'd also want to discuss in private with the Practice manager, as your GP is truly out of order. But this you know... heheh. Sorry you're going through this... even the best of them mess up, believe me, I've decades of experience.. and the specialists/consultants too... so we HAVE to know everything going in.. otherwise we get blind sided.. although many are excellent, of course, and yes, I know they are all worked to death and exhausted.. I do empathise having been in Social Work for years... but I NEVER let my ill health and exhaustion etc give anything other than the best support and work I could do for the cases assigned to me. So - he needs to buck up, in my opinion. Although I will say, getting angsty with them won't help.. as they'll label you as having mental health issues before you know it.. I'm sure my lot thing I'm a hypochondriac... believe me, I am nothing like it -I've just had to fight all the way for the right support and have had similar issues right off the bat with my lupus etc, for most of my life.. and with my other conditions, hence I'm a bit of a mess.. at 62. My old (and very old) GP just said "oh well you probably have an infection or something.." after being my neutrophils at 1.0 for years every time I went in begging for help with my skin, skeletal, exhaustion problems.. In the end he retired and I happened to see a younger GP who was up on rheumy things... and he apologised..! He also said he wouldn't blame me if I made a complaint, but that he was going to refer me urgently to Rheumatology. I've had similar over and over and over... so, I do understand that GP's hve to know everything about everything which is, let's face it, impossible.. but that means they need to listen to us, and the information we have found, and do their own research to ensure we get the best care.. but I do know it must be utter hell for them.
Right, I have blathered.. just because I totally empathise with you, and them really... but it doesn't make it ok not to do their own research and ruddy well do their jobs to the best of their ability instead of staying at a place in their education (as new info adn guidelines is out there all the time.. actually yes, have a look at the NICE guidelines for raynauds and related things such as neutropenia and hypocomplementemia etc... Don;t let anyone fob you off if you don't have positive ANA bloods as that's not the end of it, ever - and if they're going to test ANA they MUST do "ANA Screen" - not "ANA" - as you need your Connective Tissue Disease bloods looked at.... This is the latest on the PatientsKnowBest.com website right next to the ANA test my GP ordered = "Not suitable for investigation of CTD - ANA screen should be used instead."..... do write all this down.. and keep pestering your GP surgery until they do the right tests... check out all the autoantibody panels they need to do (but they prob won't).
Can't wait to hear your results... and hoping it's ok, because at the end of all this, the most important thing is you being well.. but definitely something going on there.. and your story and pics are all too familiar.
I've had Secondary Raynaud's for many, many years and my toes often ulcerate and become infected. Primary and Secondary Raynaud's differ in that Secondary is triggered by the immune system and will show up in blood tests whereas Primary is just triggered by cold.
My advice to you is to do a lot of Googling to find a reputable rheumatologist in your area and ask your GP for a reason referral. It is your legal right to choose any hospital you prefer! . I refuse to go to my local hospital because I know I will not receive specialised care there.
Hey Linda. Thanks for your reply to Lozza. I usually get v bad chilblains in my toes each year, but I also had infections under big toes this year and was excruciating until they burst. What treatment do u get for that, if any? Thanks so much, D
Iloprist infusions work for me but I'm not allowed to have them now as I also have lung disease and the doctors feel it might be dangerous.
The drugs given cause terrible side effects so I avoid them like the plague. Raynaud's destroyed my big toe nails and I've not been able to wear sandals for caloric 5 years now.
I have multiple autoimmune conditions... all related to rheumatoid arthritis - which I don't have - but make life hard at times
Yes, I was due to have it one year via my Rheumy recommendation as I was getting much worse feet issues, but the nurse talked me out of it in a way, when she called to do a phone pre-infusion check.. I've heart conditions and it really didn't sound like a good match for me, along with all my other CTD's and multiple organ diseases etc etc.. so I bailed. She said it was "pretty strong stuff on the body" and I thought "hmmm, I can't take any more as struggling so much already".. and that was that.
So sorry to hear about your toes... I can understand that happening as even with this one year with infections under my bit toe nails it's left my nail in a really bad state - as I also had blood coming up from the er, quick to we call it? The nail fold and up to a third of the toe/nail.. although I usually have this, but this year coupled with the infection too it wasn't very pleasant for a few weeks there!
I have sjogrens and lupus and a ton of other stuff so, yep, it's not easy, I know.. I keep myself as well hydrated, warm and with an excellent diet and not sure what else I can do. The methotrexate helps keep those lesions at bay, but the global bone and every fibre of my being pain/complications (have fibromyalgia too of course) has gotten much worse in the last few years.. unbearable at times.. and the exhaustion.. No wonder we end up in tears from time to time.. it's just too much.
Anyway, wishing you improvement as much as possible - I'm a bit better in the warmer months ie Spring Summer.. are you...? Ah but then if it gets too hot.. I think we all struggle with that..
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