PMR and Reynauds and Erythromelalgia

[MDT1]

Has anyone else been diagnosed with the above - will it never stop! I am at a low dose of Pred 1.5/2 on the DSNS taper and now this! It is so upsetting. On a positive note it does not seem to have affected the PMR so far but if I start meds for EM/Reynauds it might so wondering if anyone else in same boat. Maggie

[PMRpro Ambassador]

How severe is it? I had isolated episodes of what was almost certainly erythromelalgia some years ago but it disappeared again. I had Raynauds when I was younger - thermoscans of my hands decorated the walls in the vascular lab at the Freeman in Newcastle as typical results - but I don't think I have had an episode since living here in the Italian Dolomites, Walking down the chiller aisle at Sainsburys used to be enough! Maybe I dress better here and keep warmer which does help. My husband was in charge of screening for diagnosis of Raynauds and said most of his patients really needed to dress more warmly though we did know a woman who moved to the south of England - another moved to Spain.

[SheffieldJane]

I had Raynauds in my hands prior to my PMR diagnosis, it seems to have gone. Mopped up by Pred maybe. I also have episodes of burning feet and painful heels and intensely itchy palms. I lose track of time since the Pandemic but maybe for a couple of years, could be longer. I haven’t mentioned it to a doctor, there is always so much else. It only troubles me with my feet up at night or in bed. It is helped by copious amounts of foot moisuriser ( unscented) my feet are very dry.

Try not to let it get you down, it may just disappear. I seem to have developed so many minor chronic issues over time, it’s like wackamole.

[Blearyeyed]

Poor you !It does feel like one thing after another doesn't it.

I was diagnosed with these about a year after starting treatment for GCA , I've since been in remission of GCA and off steroids , but will have Raynaud's and EM for life.

I'd actually had the two since childhood but it was only ever very bad in the winter causing chilblains and high heat of summer causing swelling and night time restless legs.

As time went on my family could time the moment before the sun went down by Mummy's fingers going white and numb if we were outside.

It got worse while on steroids because of the effect the medication had on my circulation.

So there are some positives ,,as your body recovers after PMR the severity of the Raynaud's and EM may reduce as your circulation improves and muscle strength increases with your activity.

Most medications you would get for it won't effect your PMR as many people take them to cope with nerve pain or circulation whilst having PMR for things like Fibro or peripheral neuropathy.

It's managing to keep the symptoms quiet and keep yourself relaxed and Stress free that helps most and will reduce the possibility of your PMR being effected by them . As the Stress , and tension you might have in your body that would trigger PMR rather than the medications themselves.

Most people try things like Self Care and creams first.

The trouble with these two conditions is getting the temperature right .

Both Raynaud's and EM are like Divas, or fighting catwalk models trying to grab all the attention.

Raynaud's can't have temperature too cold , but EM which mainly effects the feet hates things too hot.

So keeping hands , feets and extremities at an even temperature reduces the flares and the other issues that arise because of them like Chilblains , swollen ankles , loss of circulation to the skin and nail beds , heat rashes etc.

Garbapentin,,although my preferred version is Pregbalin as it is gentler on the stomach helps reduce the nerve pain and itching of EM. If you are already taking Duloxetine it can be increased or it can be prescribed instead of in combo with the drugs above.

If you are on beta blockers for high blood pressure or migraine you usually need to taper off these and change to a drug like Nifepidine , which controls blood flow and blood pressure but from a different pathway to beta blockers. Beta blockers make Raynauds worse.

I am on Midodrine, which improved my Raynaud's a lot , but I get this because of Dysautonomia it's not the standard treatment.

Self Care is the big changer for both. Keep feet and hands , nose and ears warm but not too hot.

Keep legs raised while sitting to improve circulation.

Keep extra socks , gloves and a hat or scarf with you even in Summer.

Diabetic or bamboo socks are best . I have Carnation silver socks , which have silver thread in the weave which helps to heat or cool feet.

If you wear tights you are better with toeless or footless ones with medium compression to improve your circulation but allow you to add a sock of the same colour if it is too cold , but also let your toes loose and cool them if you feel your itching and EM overheating strike.

Packs of three tights , used by for ballet dancers , are available on Amazon.

Light compression ankle supports are good for wearing over normal socks for short periods to boost the circulation to your toes in winter , or in summer if you are being active and have bare feet for water activities . If you use them in a pool , take them off at the side and change to a dry pair of soft non slip swim shoes to prevent slipping.

I have lambswool inserts in my shoes and slippers and I line my boots with fleece in winter. Having them removable helps so you can add warmth when you need it but remove them when your too hot and the EM strikes.

I have fingerless , mild compression Arthritis gloves for doing things , two pairs for times they get washed. I have an extra pair of these gloves with fingers to put over the others when outdoors . Then I have soft cotton and lambswool gloves to layer up.

I use a cream called Akilhiver or Akilwinter , once a day to improve my hands and feet , this genuinely can stave off the dryness and can ward off the Chilblains even when you feel the itch. I use it twice a day in below 5 degree temperatures. Keeping the skin healthy is very important and that's done from the inside too.

Taking a daily oral vitamin and mineral after your fattiest meal , and extra Magnesium , Vitamin B complex , Vitamin D and K2 also helps . Increasing water intake improves the circulation and reduces itching in EM. If you do smoke , stop it really causes an issue. You may need to reduce caffeine and drinking alcohol , especially later in the evening. Increase protein , animal proteins are what really helps, to improve your vein health. Foods containing capsicum , like peppers , Turmeric and chilli's can also boost your circulation.

Keep your feet raised on pillows if you share a bed or raise the bed end and use a Magnesium cream or spray at night to reduce restless legs and the chance of Raynaud's/EM as you sleep.

Exercise like walking and Pilates or tai chi foot, lower leg, hand and arm stretches improve the circulation over time by increasing the muscle strength in those areas. Have little strolls each hour in the house , a few minutes stops poor circulation making it worse.

Use sparkling water in a little spray bottle with a few drops of peppermint oil in it to cool your feet if they get hot or itchy in Summer or if the EM us causing throbbing in winter. You can also use this on the back of your neck and wrists to cool down generally.

If Raynaud's makes your digits numb you must warm up slowly or you will get Chilblains that can cut off the blood supply to the skin . Don't immerse fingers or toes in hot water or put them on a hot pad . Warm socks or gloves. Then put a hot water bottle on your knees or behind your calves , or at chest level for hands the heat will slowly radiate to the spots it's needed without causing extra issues.

Keep positive and relax it becomes second nature to deal with it.

[MDT1 in reply to Blearyeyed]

Thank you so much for all this, I am going to have to reread it a few times, I will print it off! but several things hit out as just like me, so many helpful tips thanks so much.

It is especially good to hear that it is manageable to have both, the keeping cool but not too cool thing / balance is so hard! I discovered the last point about heating - a hot water bottle actually hurt me

The GP suggested I think about nifedepine when it gets bad enough - is that inevitable? I am not sure where to go for information. There is a facebook group but it is a very mixed bag, not really very helpful... they talk a lot about finding an underlying cause, especially genetics??? Is there a group like PMRGCAUK??

Are you suggesting the restless legs are possibly related to reynauds/EM I thought it was yet another, separate thing? .. does it matter where I spray the magnesium?

Thanks for any thoughts x

[PMRpro Ambassador in reply to MDT1]

You shouldn't really use a HWB on your feet or hands if affected by Raynauds - the trick is to keep your core warm - but it is usually OK using the specially designed electronically warmed boots/gloves that you can find online or immersing them in warm water. Keeping out of draughts is also important - and next to impossible in the UK!

IS it erythromelagia or is it the sudden dilation of the blood vessels afterwards that is seen in Raynauds? When blood flow returns, the skin turns red, and may throb or tingle - which is a bit different from what happens in erythromelalgia in my experience.

[Blearyeyed in reply to PMRpro]

Yes , warming up very slowly or managing the temperature is key to both. But unfortunately you can't use those warmed boots with a combo of Raynaud's and Em , it's like pure torture and triggers the EM , or is pure throbbing torture if your Raynaud's is already flaring . I tried my friends then spent the morning amusing her walking on my heels and bouncing around like a cat on hot coals.

When my Raynaud's strikes I usually get the hot water bottle or heat pad on my chest or back and on the knees . With the fingers I try immersion in virtually cold water first , then Luke warm and as it starts to feel a bit better , then I dry put on my gloves and I move to having a cup of tea but the mug has a mug cosy so I can hold something warm without triggering things off again.

I think the base the diagnosis of EM on it occurring in areas that aren't usually effected by the Raynaud's , for longer periods either when the Raynaud's doesn't flare or in places not effected by Raynaud's and because it flares to heat rather than cold. It's a nightmare trying to find a sweet spot that keeps them both happy.

[MDT1 in reply to Blearyeyed]

yes, sounds right, my feet have not really been an issue in Reynauds which was diagnosed 1st but are now so hot and painful after even a short walk. My ears and face also flare though not often

I do not like warming my core as it sometimes seems to flare my feet and hands - I fins gloves/socks on/off as appropriate works best when out and a HWB to my core at home. Thanks x

[MDT1 in reply to PMRpro]

thanks for this, In terms of the final paragraph - am not sure to be honest, have a GP appt next week where I hope to ask about why EM or other diagnoses

[PMRpro Ambassador in reply to MDT1]

Been banging my head trying to remember the term, just remembered it - reactive hyperaemia! Used to be on the tip of my tongue when I was involved in research about it!!!

[MDT1 in reply to PMRpro]

thanks - I will look it up x

[Blearyeyed in reply to PMRpro]

Glad I'm not the only one , 😆😆😆😆

[Blearyeyed in reply to MDT1]

For myself the Raynaud's / EM and restless legs have the same underlying causes although they are separate things and you aren't definitely going to get them all , or at least not at the same time.The Ehlers Danlos and its effect on my circulation and immune system is my underlying cause. My Fibromyalgia makes the restless legs worse.

For many it is linked to types of arthritis or other autoinflammatory or autoimmune disorders. Have you had your ANA blood test done , or do you have any types of arthritis ?

How far along are you with your PMR?

I think it is worth trying Self Care techniques alone at first if your symptoms are mild or moderate to see if you can control things without medication. If the Ray/ EM is just linked to the PMR you may be able to manage it until you are on lower doses of steroids . I had got to the point that I would need the medication , the fight between Ray/ Em meant I was getting feet so sore I could hardly walk and the Em was effecting my scalp , ears and face giving me a Lupus like appearance and triggering migraines.

Thankfully the drug I take for Dysautonomia also helped the circulation in my hands and feet so I can cope on that but you still need to use the Self Care techniques as well. I would say if it isn't controllable with self care alone or if the Raynaud's triggers issues effecting your digit tips or bail beds it's better to use the Nifedepine sooner rather than later.

If it is related to the PMR and steroids you may be able to stop that medication too when you are a number of months steroid free.

I also meant to say , carry one of those little soft microfibre towels or cloths with you . Neither condition responds well to dampness or sweat and sometimes it's good to use the spray bottle of water on a cloth to cool the EM without it being sprayed on your toes or fingertips to stop the Raynaud's kicking off.

I do put the Magnesium night time spray on slightly differently. If it's winter I use the Akilwinter on the toes , heels and under the foot at night then use the magnesium spray on the top and sides of the foot and on the ankles and backs of the calf. It seems to work for me . You use the Akilwinter all over the foot in the morning, but sparingly , the cream does last well .

There is a Raynaud's forum on HU I'm on it but it isn't a group with the vibrancy of this one , although you can learn a lot from going to the website links and can get a few tips reading others posts.

Feel free to send me a private message if you need more advice , take care , Bee

[MDT1 in reply to Blearyeyed]

thank you so much, very helpful points to explore. I feel empowered for my GP appt and to be honest much less scared now. I do feel it might be linked to PMR, I might just be hoping that. I am on a slow taper and currently at 2/1.5 - which is fab!! it was diagnosed June 2021 but I fel I had it at least 6 months before that. I had a few flares in the early months as I was rushing, but now I am VERY steady. for example - I had a cold recently and at the 1st sign I might be ill I upped by 5mgs for a few days! This site has been my life saver - esp Dorsetlady and PMR Pro and now yourself. Thanks guys x x x

[Zebedee44]

WOW, I have been struggling with intensely itchy hands and feet for several weeks now and the doctor hasn’t been able to fathom it, but I think this might be the problem. I was aware that it was effected by the cold or rapid changes of temperature, usually starting in the palms of my hands and spreading up my fingers and sometimes up my wrists; it felt like scabies between my fingers and like the itchiness of athletes foot on the soles of my feet. It has been driving me mad.

My mother suffers with her fingers going white with cold but I don’t, and I have a very outdoor life with my pony. I wear gloves a lot, and was beginning to think I was allergic to something . ButI couldn’t work out why my feet would start to itch inside my socks and boots!

The doctor prescribed a moisturiser applied four times a day and this has helped a bit but the redness, itchiness and pain has continued to occur very randomly and erythromelalagia might well be the cause. Thankyou for your post.

[MDT1 in reply to Zebedee44]

yep - in retrospect I started with itchiness, and even now it is a warnign sign of a flare. Moisturising regularly is definitely also very importent! Good luck x