I was diagnosed with Raynaud's in early 2015, after suffering with it for around 2 years previously.
My toes are affected much more than my fingers, and from time to time I have developed chillblains and sore areas on my toes during the winter months. I get discolouration, the numbness and severe pain in both cold and even damp weather, even if it's not particularly cool outside.
I was referred to a rheumatologist in 2016, who I saw perhaps 3 times? He thought the severe symptoms were presenting more as secondary Raynaud's and I had a number of blood tests. However nothing came back from these, and I haven't had a appointment letter for the consultant for around 2 years now.
I was initially prescribed Nifedipine by the GP, which unfortunately did not help in the slightest. The rheumatologist then prescribed me sildenafil, and again I did not see any benefit from this either. As the weather warms up, the symptoms lessen until autumn rolls around... and this is kind of the roundabout I've been on for the last few years!
MY QUESTION:
Around 4 weeks ago, I noticed my second toe/left foot was extra sensitive, it was red and very painful a lot of the time even when my feet weren't cold. It became dark red, then purple, then almost black. (I'm very fair skinned). I decided to take some of the sildenafil I had stashed away and I have been doing so since. It then developed a dry "paper-cut" along the very top, and 2 days ago it split open into an open sore. It's purple/grey, sensitive and ranges to mildly to very painful.
My question is, where do I go from here? I feel like my GP has done all he can do in regards to the Raynauds. I don't know what happened to the consultant care I was receiving, it's like I was dropped off the list?
I do remember the rhumatologist saying if I ever did get any open sores then to go straight to A&E as it could be serious, but this feels a bit over dramatic? The NHS website doesn't have any advice on what to do either?
Has anyone been in this position? I feel a little lost and getting worried about it, but my natural anxiety is confusing me as to whether it's a big deal or not, and what to do about it all as I feel a little lost in the system.
Thanks for reading
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SpinyHog
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I’d ask my GP about if I was discharged from the rheumatologist to be re-referred. Tell them the advice they gave you if there was a sore & if it’s infected, discuss how normal antibiotics orally won’t reach it due to the poor circulation. I think you’ll need iloprost treatment (I think the danger is it’s infected and with the poor blood supply antibiotics won’t reach it and you could end up with sepsis. If it looks infected and/or you feel unwell I’d go to hospital. You’ve had the medical advice for this scenario; I’d take it :0) take care and I hope you’re OK x
PS the blood tests for a primary condition not showing anything doesn’t actually mean there isn’t. A positive result means you have something, a negative is no result (because someone with an autoimmune disease tested at different times has positive and negative results - I’m not sure I’m explaining that well!) so you need further investigation
Can you pop a photo on here, ulcers aren't really seen in primary raynauds so it would be interesting to see it. (I have scleroderma and have had ulcers) Also contact the raynauds and scleroderma association for advice as it sounds as if something is going on.
Get that toe seen to asap. If your GP does not have a good minor injuries centre then go to one of the NHS urgent care centres (GP would not normally treat, they don't normally do dressings, it would be a nurse in the practice). If untreated you could lose that toe and risk further infection such as sepsis. Itmight be a wider vascular issue but hopefully further tests will follow but you need to get back into the system and save that toe first! Given that you were prescribed sildenafil, why did you stop taking, it often makes a massive difference in incidence of ulcers. And even if it didn't seem to improve things, it could have stopped them getting worse.
Hi, thanks for all the replies. I'll do a brief update and then reply to individual questions a bit later because I'm completely shattered!
So, I went to A&E yesterday morning. The doctor then referred me to the vascular department at the larger hospital 30 mins away, and I had to go straight away. There was much waiting around, but a vascular surgeon and consultant finally saw me, and believed I might have a blockage in my leg? So I was given quite an upsetting diagnosis.
Late yesterday I had a CT angio scan, and stayed overnight. I got the results back this morning and...nope, no blockage in my leg (although they couldn't be sure there wasn't one in my foot).
So I've finally got home with a prescription for blood thinners and statins, a follow-up appointment with both the vascular consultant and a rheumatologist, and a vague diagnosis of Raynaud's plus blood vessel disease. The vascular team do think it's an auto-immune problem.
I took a pic in hospital yesterday to show you, and I've added it to my original post.
So...hmmm. It's all still a bit up in the air at the moment. Thanks for all your replies, it means a lot.
So glad you got it seen to and that they are taking the problem seriously. Hope it heals and that you get to the bottom of what is causing your circulatory issues. For future reference, find out if you can self-refer to podiatry, this may include diabetes foot care clinics which you may be able to attend on an urgent basis.
I'm not suggesting that you have diabetes, but that other conditions eg severe Raynauds can cause the same issues (eg ulcers) and that the nurses / podiatrists that run these clinics are best for treating the symptoms (which often doctors are not very good at).
Your blood vessels are shrinking from the disease and any kind of sore or cut will hardly ever heal because of no oxygen in blood. You could possibly loose your toes if you don’t go to emergency...I almost lost 2 fingers. Had surgery on my hand to open up SOME of the blood vessels Sympathectomy is what the surgery was called. I know how much pain you are in.
I have developed very similar symptoms. I now have an infected opened wound but my gp just sent me home with antibiotics. I had to go to a private vascular consultant that told me I had Raynaud’s. I honestly don't know what to do with to open wound and the fact that 4 more of my toes are presenting the same symptoms. My gp said it was just covid toes but I've had this for 4 months and I haven't had any other covid symptoms plus antibodies tests came back negative.
I know this post is quite old but did your toes get any better and who did you see?
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