Digital ulcers

[Raynaud]

I first started experiencing numbness and pain in my hands and fingertips after being at work, at night or after exercise. It started as pins and needles and tingling, which would disappear relatively quickly if I moved positions. It got worse, very quickly, and over a few months it didn't matter what position I was in, I no longer had feeling in my hands or fingertips at all. Using my hands to do anything was impossible, they were going numb after using my phone, using cutlery etc and the pain at night was unbearable. It didn't matter how I lay, I was having to get up every 10-20 minutes throughout the night to alleviate the pain. I eventually had to be signed off of work, and that was 5 months ago. Since being off of work the pain has subsided, however the numbness and throbbing is still there and I find it almost impossible to do even the most simplest of tasks.

The other things that seem to have come along with this is Raynaud's phenomenon, and digital ulcers. I have 2 fingers in particular that are freezing and a strange colour all of the time, and I can't seem to get any professional diagnosis for this. Same goes for my ulcers on my fingertips, which are incredibly sore and haven't healed in months. I don't know what to do about any of it! Doctors don't seem to know or care, so I have resorted to online. If anyone can help me or shed some light on my situation I would be so grateful 🥲🥺

[positivedaybyday]

Hi,I started with numbness, pins & needles in my hands which were red raw & I was unable to use my hands.

Have you got any other strange things going on? I ask this because I did, with my mouth not opening to its normal extent, strange sensations in my legs. Then my hands went OK but I had the same burning, numbness & pins & needles in my feet.

I was diagnosed 6 months later with Diffuse Systemic Sclerosis. Then after a few more months I developed secondary Raynaulds.

See if you can get a referral to a Rheumatologist to make sure you have no other underlying conditions.

I hope this is not the case for you but it's best to check.

My normal Dr had never heard of my condition, this happens very often as they are aware of preceeding symptoms.

Push to find an answer to your problems! Xx

[Leochild47 in reply to positivedaybyday]

Good morning,

I’m not an expert and it’s hard to know my son’s symptoms has he has Autism and he doesn’t always relay his feelings and however whenever he has ulcers that are not healing he receives Iloprost treatment from his

Please see below :

Hope this helps

Intravenous vasodilators such as iloprost are used in more severe cases, where the tissue is threatened or if digital ulcers are not healing with the standard treatments. Iloprost widens blood vessels and therefore helps to get the blood flowing to the extremities to help heal ulceration.

[Midgebite21]

I would see another GP or change practice. Digital ulceration either of the fingers or toes is not something to be ignored. No healthy person ( unless exposed to the most extreme conditions ie prolonged exposure to very cold conditions) should be developing these lesions for no reason and investigations should be carried out. The fact that you are getting pain at rest (in bed) is indicative of some kind of cardiovascular problems. I’m a podiatrist of 30 years as well as having scleroderma and raynauds myself so see lots of circulation problems in my daily practice. You won’t be able to access a rheumatologist appointment for in-depth tests on the NHS until your GP starts to listen to your problems and take them seriously. You may have to make a nuisance of yourself, don’t let them palm you off.

What was your occupation before being signed off? You weren’t using anything that vibrated?

[Jacko37]

I'm no doctor but you don't get digital ulcers with primary Raynauds. You really need a referal to a Rhumatologist to check for any underlying conditions. With that much pain you need some heavy duty meds and to find out the cause. The best treatment for digital ulcers is Iv Iloprost and only a Rhumatologist can arrange that, good luck

[FreezingFingers]

Hi, I had similar pain at night, having to get up every 20-30 minutes. I was prescribed topical Glycerine Trinitrate ointment (which isn’t on the NHS and Boots was the only pharmacy I found that could get it made up, or the private hospital). It’s used to open up the capillaries of Angina sufferers apparently. It has helped alleviate my finger pain at night - I was able to sleep again almost straight away. It didn’t seem to help heal my digital ulcers though so I’m now on Nifedipine which I think is helping - the current ulcer is slowly getting better at least. Next step is to find a rheumatologist who specialises in Scleroderma as I’ve been diagnosed with CREST.

I really hope you find something that works for you.