I haven’t posted here in about a year, but have since been diagnosed with UCTD, secondary Raynaud’s and Sjogren’s. I’m currently in a flare up, my first since I’ve been on Methotrexate and my Raynaud’s has gotten so bad.
I’m just looking for a bit of advice on how other people manage it. My Rheumatologist has been a bit useless for tips on how to help. I was prescribed a medication for it but it didn’t help at all and he says that was the only one you can prescribe 🤷🏼♀️ My feet are generally a lot worse than my hands as they are harder to keep warm. I’m finding now that whenever they heat up they go so red and I get swelling/burning pain, most notably after walking or in the shower (attaching a picture to show this).
I’ve spoken to my GP about this and she thinks there might be a secondary issue here because I get a lot of pins and needles and numbness in them too.
Just want to hear about other peoples experiences with this, how you keep your feet warm/at a normal temperature and anything that you’ve found helps you? Thank you so so much in advance for reading this and sending hugs to everyone out there who is dealing with these chronic issues, god it can be tough ❤️
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emmamonica360
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I have Diffuse Systemic Sclerosis & the burning sensation & discolouration in my hands & feet were the 1st symptoms of this disease. Both areas had numbness, pins & needles & an intense burning sensation.
My feet were difficult to walk on, the fear of falling very high.
For me it was secondary Raynauds.
I had all sort of tests at the hospital checking the blood flow through these areas.
I was given special insoles for my trainers ( the only shoe I could wear) to cushion my feet as I had swelling too. These did help. It was all arranged by my Rheumatologist at the hospital visiting the Podiatry & hand clinic.
I used a seat in the shower as I couldn't stand on my feet due to the pain.
I've been on Sildenfil for a while now which does help as the blood flows better with this medication.
Speak to your Dr or Rhuematologist to see if your medication can be changed.
Keep a daily diary & the photos are great as you may need as much evidence as you can.
Try anything that helps. I used a sports frozen support at night as my feet were on fire. Buy plenty of woollen socks & gloves, hand warmers etc.
Trying to find out what works for you as an individual is very important as we all react in a different way.
I hope you get some relief from your symptoms very soon.
I know exactly what you are going through & it can be a struggle.
It’s very rare for me to find someone who can relate to my symptoms but so reassuring to know that it’s not just you who experiences them.
So sorry to hear about your pain, it sounds like you’ve been through a lot as well. But thank you so much for all your advice and tips! I had never thought about a Podiatrist before so that is definitely something I’ll ask my Rheumatologist at our review next week.
Also I think I need to consider a shower seat too at this stage 😅 I can barely stand on my feet for 5 mins anymore in the shower before the turn red & purple and burn!
Did you find the insoles helped with the pain in your feet while walking or just help with the swelling? My Physio said that insoles wouldn’t be that helpful, but I will bring this up again with my Dr.
I haven’t had any tests at the hospital for my Raynaud’s, would you know which kinds of tests these are?
The insoles really helped me cushion the pain.It was found I had Mortens Syndrome on the area at the back of the foot underneath the toes. It is caused by tissue thickening & nerve problems.
Test for my hands/feet, where do you want to start!
I had my hands plunged into ice cold water to see how long it took for my hands to warm up.
I had ultrasounds taken of my feet where they diagnosed Mortens Neuroma
Electrophysiology showing I had Carpel Tunnel Syndrome right sided.
I signed up for many studies, eg Nerve conduction, showing I had Peripheral neuropathy.
I've had Iloprost infusions several times to help the blood flow.
My Rheumatologist has been terrific in investiging all my areas of concern. Mind you I do have the worst of the worst in Systemic Sclerosis.
I also had Physiotherapy on my hands & given leaflets on hand exercises & flexibility.
It's worth making a note & seeing if you can gain access to other services to help.
Honestly thank you so much for taking the time to list all of these, it is incredibly helpful and I have noted these different tests down to mention to my Rheumatologist next week.
I live in Ireland and had to go private due to covid. I didn’t get any of these tests done despite being diagnosed with secondary Raynaud’s. My GP actually mentioned peripheral neuropathy to me and from reading about erythromelalgia that seems to describe exactly what I’m experiencing.
I’m so sorry to hear you have such a severe case of SS. I have had a localised version of it for the past 8 years and it can be awful. Wishing you all the best and just thank you endlessly for all of the advice 💛
You're very welcome, anything I can do to help others on the right path.It's a minefield.
In a way I was lucky, I had a private diagnosis whilst in Spain for a few months.
I visited a brilliant German Dr & came home armed with a letter to say I needed urgent medical attention & a list of the results of all the blood tests needed
You can imagine my horror when my own Dr stated he'd never heard of the disease!
I was referred to my local hospital but they came back & said they didn't see me as an urgent case!
It was a total nightmare & this is when I took control to find a specialist in Systemic Sclerosis.
I got the referral to another hospital 40 minutes away, saw my specialist a week later on the Friday & she wanted me in straight away & told me the dreadful news of the Diffuse Systemic Sclerosis & all its potential.
I was so lucky to be under her wing so anytime I can help someone else I will be there for their journey as it is or can be very very scary with floods of emotions at times.
I have a big folder with all the treatment, hospital letters etc so this is where I could look back & give you some pointers
Wow, that seems like you’re getting great care! I have Diffuse Systemic Sclerosis too, and get nothing like that level of support. I supposedly get a check-up every 6 months, but have only managed to get one appointment in the past 2 years due to covid. Any problems I develop, I’m just told that it’s part of the disease, and that it may continue to get worse. I’m struggling with severe calcenosis on my hands and knees at the moment, and have been waiting for 6 months for an assessment by the hand surgeons for it. I’d love a team like yours!
I'm so sorry to hear that LittleMissH ! That sounds similar to me trying to get a diagnosis last year at the height of Covid. I would definitely try and push for better care or maybe to see a different Rheumatologist? Especially if you are struggling. It's not fair to leave you waiting that long. Wishing you all the best xx
Oh god I can only imagine how much of a nightmare that must have been. It's so difficult when it's a rare disease cause GP's and your standard doctor just don't understand the illness at all, or the complexities or severity of it either.
Fair play to you for advocating for yourself and pushing to get an expert on board, I'm so glad to hear you have someone fighting your corner with you. That's the least we deserve with diseases like this.
Thank you for all your encouragement and advice! I feel a lot more emboldened to ask for everything I need going into my consultant review on Thursday. I'm hoping he is a lot more helpful this time around. But if not, I will continue to push for the treatment I need!
I'll let you know how it goes. Hope this week is a good week for you xx
Hi, it could be a reaction to medication as previously suggested or it could be a condition called ERYTHROMELALGIA.
I’ve copied this from an article.
Erythromelalgia
Erythromelalgia or Mitchell's disease (after Silas Weir Mitchell) is a rare vascular peripheral pain disorder in which blood vessels, usually in the lower extremities or hands, are episodically blocked (frequently on and off daily), then become hyperemic and inflamed. There is severe burning pain (in the small fiber sensory nerves) and skin redness. The attacks are periodic and are commonly triggered by heat, pressure, mild activity, exertion, insomnia or stress. Erythromelalgia may occur either as a primary or secondary disorder (i.e. a disorder in and of itself or a symptom of another condition). Secondary erythromelalgia can result from small fiber peripheral neuropathy of any cause, polycythemia vera, essential thrombocytosis,[1] hypercholesterolemia, mushroom or mercury poisoning, and some autoimmune disorders.
Thank you for sharing this! I had heard someone else mention it on this forum before but never knew exactly what it was. It definitely sounds the most accurate for what I’m experiencing right now and considering I had these symptoms before starting any medication also.
Hi there, I have erythromelalgia (EM for short!) too, plus reynaud's and suspected sjogren's. I struggled to get a diagnosis for my EM for years as my GP's didn't know about it....and this is often the case. You have to be direct and present the evidence - it is unlikely they will just diagnose it on the spot. The inherited form of EM is very rare, but it seems that when it accompanies other problems, it is not so rare. There is no quick and easy fix for this problem though, but avoiding triggers such as heat and alcohol can help. Many people with EM also have reynaud's so it is a difficult balancing act between heat and cold. Good luck!
You said it exactly! Trying to balance between heat and cold is the bane of my life at the moment 😅 Yeah it seems that EM is quite rare so no wonder GP's don't have a clue. So there is a primary and secondary form of the disease like Raynaud's?
I've definitely noticed it's at it's worse with alcohol or with a hot/warm shower. Will have to try a bit harder to limit these. Thank you for your knowledge and advice!!!
Excellent…I have the IEM form along with Raynauds Phenomenon and SS.
Took 64 years to get IEM diagnosis via double DNA 🧬 testing here in the USA.
I have a plethora of diagnoses many autoimmune disease related.
I just turned 71 and have had IEM & RP all my life and SS approximately 2008.
Most of my Autoimmune problems are from Dad. Mother added a few of her own.
I’m so extremely sensitive to heat that I barely cook meals anymore. Touching the cords of electrical appliances/machines will burn my hands and I can sense heat signatures from objects just passing by them where no one else detects anything.
Having these combined problems in the total of 65 plus 3 pending has been so challenging at my age. But I do try to help others as well.
I use warm only water foot/hand soaks to pink up Raynauds Phenomenon and lidocaine ointment or Aspercreme with lidocaine for EM/IEM flares on my feet.
Mine are cyclical whichever one triggers first is followed by the other.
Weather is a huge trigger. Also salt/sodium intake (includes meds and even water) will constrict blood flow making Raynauds worse.
I learned a lot from your reply. So far my doctors diagnosed my conditions and little else was discussed about them. The exception was the top referred Rheumatologist specialist I saw gave me the NORD.org for rare diseases and TEA (the erythromelalgia association assoc site to contact for these conditions.
They helped me a lot.
To whomever has these problems I pray 🙏 that you will find relief and a balance sooner rather than later.
I also have feet that can be freezing cold with toes turning blueish/purple or the opposite with feet/toes turning bright red, burning, and swelling where it feels as if my toes want to pop out of their skin (pain level is worse if it happens in the afternoon/evening vs the morning). I have recently been diagnosed by a Boston specialist: Erythromelalgia, Chilblains, and vasomotor instability. My feet and lower legs have numbness and pins&needles sensations. When I get into a warm shower my toes turn different shades of purple, blue, or red. I have recently been prescribed pentoxifylline 3x/day with the possibility of increasing to 6x/day. If that medication does not help, it’s onto a trial of a different medication (Lyrica was mentioned by dr). I have also been prescribed a topical compounded cream made of amitriptyline, ketamine, and lidocaine for use when having an EM-flare. It helps a lot if the flare is in the morning. But only dials the pain down just one notch if the flare is in the afternoon/evening. For the Chilblains, I wear alpaca socks in the winter and have down booties to put on while I watch TV.
Thank you for all of the suggestions! All of this is sounding exactly the same as me. The purple/red feet in the shower and the burning pain is all too familiar, and quite shocking to see sometimes. I think I may have to invest in a shower seat.
Thank you as well for naming the medications, I have noted them down to mention to my consultant. I'm baffled that he told me there is very little that can be done, when clearly there are a few options available. Let me know how you get on with the new medication, I really hope it helps to reduce the pain 🙏
I'm looking at down boots online now, these look amazing and exactly what I think I need to be wearing all day everyday
I have not suffered burning feet like you. How much Methotrexate are you on? I am on 15 mg per week.
Here are my recommendations for keeping feet warm.
* Wear thick cotton socks, with sandals or crocs in the house, to let feet breathe. Wear crocs in the shower.
* Outdoors, wear tough walking boots, fitted with special, hand-made National Health Service orthotic insoles (this is because the padding on my feet has shrunk away, leaving only exposed bony bits to walk on).
* Wear ankle warmers - in my case made from cutting off the neck of old socks, to form a cuff close around my ankles and which fit underneath trousers. Either that, or lengths of tubular bandage do the job.
* Wear thick cotton trousers.
Generally, it is important to keep my body core warm with a padded body warmer (made by a company called Dickies). I wear many layers: 1) thick cotton tee shirt, 2) long-sleeved thermaI vest, 3) brushed cotton shirt, 4) lambswool pullover, 5) body warmer, 6) cable-knit cardigan. I keep my hands warm with wrist-warmers made from cut lengths of tubular bandage. If my hands get particularly cold I take a Sildenafil pill, to get peripheral circulation going. I have got Covid-19 at the moment so my hands are extra cold lately.
Anyway, this is my approach. It seems to work. I have hardly had the heating on this winter. I don't have central heating - just a stove in the living room. I try to maintain a regular and constant temperature through body management rather than environmental control.
I have secondary raynauds, and have come to live with the pain over the past few years, but also made lots of adaptations to the way I live.
I now wear Ugg boots throughout the year (both inside and outside the house) with woollen socks as well. I also put disposable foot warmers inside my shoes, and that helps. I have a mat that I heat up in the microwave (which is actually designed to keep rabbits / guinea pigs warm in winter). I put my feet on the mat when I’m sat on the sofa, and wrap them up in a fleece blanket. I’ve also now installed underfloor heating throughout the house too, which does seem to make a difference as there are no cold surfaces.
For my hands, I wear gloves all of the time (including in summertime, and in the house), and use hand warmers as well. I have a really lovely winter coat with hand-warming pockets, so when I go outside my hands don’t come out of my pockets. It does mean that I needed someone with my when the children were young, as I couldn’t take my hands out of my pockets to look after them, but I have got used to accepting help now. At home, I nearly always have a mug of tea / hot water to hold onto too! I tend to use voice technology to help me with typing, as often my fingers can’t cope with being exposed enough to be able to use a keyboard for any length of time.
I hope that you find ways to manage too - I’ve managed to get used to all of the changes over the years, so it is just part of normal life now!
I was diagnosed with Raynaud's last year. It was sudden onset. I also have extremely swollen pads of my feet, along with my fingertips. If I type too long, they get more swollen and tear. I went to a top dermatologist in my area and was diagnosed with Aquagenic keratoderma which means I have crazy pain when my feet are wet or sweat. The combination of the cold with Raynaud's and the peeling and burning with the other is awful and so painful. Does anyone else get nauseous from the swelling and pain? I feel like I have to sleep around noon noon everyday just to do a reset for my body. My rheumatologist is baffled.
I had this diagnosed but my research, trial & Error realised could be side effects & collision of number of medications such as statins , as soon as stopped /changed the symptoms went that is raynauds, pins & needles ever since .
Hi skybluepink , oh that’s very interesting. I’ve ended up getting a diagnosis of EM now too from my Rheumatologist. What medications other than a statin were you on that you stopped?
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