Just wondered if anyone has splinter haemorrhages and if so did you see anyone about them or mention them to either rheumatologist or dermatologist? I've had one long one on pinkie finger for ages and now have another one on index finger.
thank you for reading and have a lovely day xx
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Tiggywoos
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Yes, I have had them on my toe nails and very occasionally on a finger nail. They come and go with me - well, they literally grow out! I did mention them to the consultant and she checked heart etc. I keep an eye on them and just mentioned last time that they are now part of my symptom list. I think, it's worth mentioning them either to your GP or specialist nurse. If in doubt and all that. Hope that helps a little. xx
thank you Rosie . Rheumy wanted me to send in feet pics so I’ll send my nail ones ! I’ve noticed another nail has one today . Funny as mine don’t grow out . Good point to make them part of symptom list ! 😘x
I get the occasional one in my toe nails but they do grow out. I have APS and am on warfarin which would be the most likely cause. But I’ve read that they can be a sign of inflammation and can be caused by vasculitis, lupus or Reynauds for example among other illnesses. So definitely mention them to your rheumatologist and your dermatologist. X
Hello Tiggy. Years ago I think they were one of my first symptoms. Rheumatologist doesn’t seem to think they are big deal. I’ve noticed I get fewer of them and less often now that l am taking 325 mg aspirin for my EM. 😊
thank you 🙏.. I’m on lidocaine patches for feet at mo but 2 weeks in and no change . I know EM is really hard to treat 😬. How have you been doing lately ? X
hi there. I use lidocaine plasters for my EM, they don't cure anything, but I find they reduce the nerve pain/burning a bit for a few hours. I don't use them continuously - they are just one strategy in a range of options & adaptions I use depending on the severity, where I am, what I'm doing and so forth. take care x
ah that’s interesting redmaggie thank you . I was told to use them every day (12 hours ) for a month . I think you’re right they work for couple hours . Do you mind me asking if you have lupus or scleroderma ? Thank you 🙏 xx
Yes, it's worth a try to see if it helps at all. I have recently been diagnosed with UCTD but have had EM for the last 10 years. Since then, I've been collecting a range of new symptoms but hopefully I will stay undifferentiated. Enjoy your long weekend
Hi, redmaggie. It's 01:30h and I am currently pacing the cool floor groaning with the pain pain of EM. I've never tried Lidocaine patches (or plasters: what's the difference?) but at the moment, I'm utterly desperate. I'll ask my GP if I can try them. What other :strategies and adaptations" do you use?
Hi Skylark, so sorry to hear about your horrible pain, and it is so much harder to bear at night time when all you want to do is sleep. I have EM in hands, feet and face. Plasters and patches are the same thing. They come in sealed packs of 5, so your GP should prescribe them in multiples of 5. Perhaps start with 10. You can cut them up. I cut mine in half or thirds , as i need to place on palms of hands, and top of foot below the toes. Plaster tape stops them curling off. You cant' use them in all situations, and its a max of 12 hours on, 12 hours off. As for other strategies, I find direct cooling with damp cooling towels helpful, but if I chill my skin too much I just keep getting rebound flares. Avoiding triggers like alcohol (esp. red wine) . I can't wear trainers with foam/memory foam insoles as they give a flare quickly despite my reynauds. I wear leather shoes with seamless merino wool socks in winter, soft hiking sandals in summer. I avoid exercise in late afternoon & evening as it flares feet., as does a warm bath and a hot meal (I guess its all about raising core temperature). Relaxation techniques are really important eg deep breathing help when I'm getting upset and tense - strong emotions either positive or negative can set off the flares. Of course there are many things beyond our control. Wishing you all the best x
Dear redmaggie,Thank you so much for this really helpful and clear answer.
I am so sorry about your more widespread EM. Mine is mainly in my feet but is now slowly creeping up my legs. My hands and ears are affected, but they tend just to swell and get red & itchy, without the intense pain.
I've sometimes tried not drinking alcohol (as you say, especially red wine) with our main meal but it didn't seem to make any difference to the pain. Whilst we were both working, we always had our main meal in the evening and that habit has stuck too.
Time for a rethink on meal-timings and also on memory foam insoles. I've been wearing Skechers for years., mostly because they are very light, which is helpful because I have Muscular Dystrophy, peripheral neuropathy and Raynaud's and the wide-fitting shoes can accommodate a degree of swelling. However it makes absolute sense that the foam actually induces the swelling! D'oh! I'll look for some leather shoes and some soft walking sandals. The weather is so changeable, my feet go from freezing cold to painfully hot etc in seconds. You know the pattern 🙄.
Thanks for the info re Lignocaine patches/plasters, I'll try them.
hi there! it's not so bad for me as I have good periods in the day without bother, and this time of year is best, mostly a middling temp. I find moving from one temperature to another the hardest, eg from cold outside to central heating. I have problems with joint pain in feet, so I wear Hotter brand shoes as they come in wide fit and are designed for comfort and support. Not all styles are suitable, and can be expensive but there are always sales on, just hang on until there is like a 40% discount or end of season sale. As for hot meals and wine which guarantee a flare, they often happen without either, so might as well enjoy a tipple sometimes
Thanks, redmaggie, that's really great. I was going to ask whether there was a particular brand of leather shoes that you go for. It's so long since I've bought shoes other than Skechers I've forgotten how to find anything else. Plus, I used to take a 7 and a half but since the EM has become so omnipresent and troublesome, I've taken to buying a size up, so I'd need to try the shoes on before deciding on which size to buy. And keep my fingers crossed that my feet don't swell up even in leather shoes! I'll look out for the Hotter sales.
My other question regarding footwear is: do you have a favourite make of sandals? In recent years, I have found that I cannot even get my feet into women's ones, which tend to have a fixed size "sock" over the arch of the foot, so when I used to buy sandals, they had to be men's ones. So ungainly!
When you say that the Lidocaine patches have "plaster tape", is that Elastoplast or the clear, adhesive stuff that you get on waterproof dressings, like Opsite? I can't tolerate Elastoplast; my skin is sensitive to it.
Hi there skylark. The patches do not come with tape. I noticed that the edges of the plaster sometimes loosened, especially in bed so I bought a roll of the clear plastic tape that can be used with dressings. it costs a pound or two at wilko or any chemist. Its not elastoplast. I hope that you find something that works for you. Take care!
Thanks, redmaggie. Coincidentally, the pain consultant's secretary rang this morning, to ask if I still wanted a Lidocaine infusion (after a year on waiting list). I've asked for a review, to discuss that. People's experiences are very variable, I understand. I may ask him for patches in the meantime. Are you on any long-acting opiates in addition, like MST, or Oramorph for breakthrough pain? Do they help at all?
I really overdid it last Friday, walking around an estate which had lots of interesting buildings. It was really rough terrain; long, wet grass, hills and marshy bits....I was using two poles but although it was a great place, I've had a wretched weekend, with my feet really painful and swollen, with EM. I couldn't sleep or walk for the pain and felt as if I'd been poisoned; an entire system reaction.
Oh dear! sorry to hear that. I really get it. I take 1 cocodamol (30/500) mostly in evenings/night if things are bad. It takes the edge off, helps sleep. The infusion may help, you won't know until you try!
hey, yes I have splinter haemorrhages in a few nails, don’t seem to go away either. I mentioned it to both rheumatologist and dermatologist. The dermatologist seemed more interested to be honest. I got told it’s to do with my raynauds and psoriasis. The Dm seems to think I have psoriatic arthritis though my Rhm thinks it’s still just Fibro as my ana’s are negative. The Dm is lovely and given me diprosalic lotion for my hair and said to use it on my nails. Helps keep them less brittle. Also I should / can use pure coconut oil xx
morning mrschook 🐓 thanks so much for replying . Ooh yes I’ve heard before coconut oil very good for skin hair etc ! I’ve just noticed unopened pot in kitchen lol so I must have had an idea to use it at some point ! Take care of yourself xx
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