Secondary Raynauds Phenomenon?

Mat48

Hi does anyone here have this and can you tell me how it can present as a secondary condition to RA in the early stages? I am aware about the visual impact of white fingers and toes but wonder if it's possible that it could be more of a sensory experience as well?

Starburst

I have it in my feet but not in my hands which my rheumy says is unusual. As my feet return to their usual colour, I do feel a tinging pain that's a bit like pins and needles but not quite. I was assured that this is also normal. I have 2 friends who have it in their hands too and they have also described a similar odd sensation as the colour and warmth returns to their hands. Hope this helps a bit. x

Boomer13

Hi Mat;
I have severe Raynaud's. I have lots of attacks brought on by many different things, from stress (self-induced too) to changing position to drinking a cold drink, missing a meal. It even shows up on my nose, cheeks and lips Could you elaborate on what you would like to know about "sensory experience"? I'm not sure what you would like to know.

The after effects on an attack range from severe pain to tingling, pins & needles.

xAnna

Mat48

Thanks so much for this Anna and Starburst. I am asking because, as you may already know (because I bang on about it rather often!) I have had this parasthesia for 3 months now everywhere. The pins and needles have diminished a lot and are only around as a faint tingle now. But my legs and feet are constantly icy cold inside (rather than to the touch) - as if they had been dipped in a pond. This doesn't come and go - it worsens over the day and by nighttime I'm still checking for drafts and constantly touching my trousers to make sure they aren't wet and rubbing my feet to try and get my circulation going :oops: It used to be a bit like this in my hands but these are now rather hot with tingle so it's very confusing!

I had almost given up trying to find the cause and was just put it down to autoimmunity in general and connective tissue related stuff. Previously when I flared with my RA my fingers would go white in the run up to it. But I have a good friend with primary Raynauds and hers is so much more extreme to look at that I've not really made the link. But my skin is very pale anyway and yesterday my feet were icy all day and when I took my socks off I found that my toes were bright white and feet looked stained with blotches and it suddenly did look like Raynauds pics.

I admit that I would like to be able to identify it because my rheumy wants me to go back on Methotrexate injections soon. I'm okay about this after 3 months off but I would like to make as sure as possible that the parasthesia hasn't been caused by the Methotrexate as a very rare side effect. My GP still thinks this may be the cause so I am doing my homework. Hope this explains? xx

Boomer13

Dear Mat;

My hands and feet are often white and "corpse-like" but the color change to blue is rare for me, although, when I was diagnosed it was because I was having episodes where my toes looked like they'd been dipped in black ink. A few months previous to this, I was having to change my socks, wash my hands many times a day because of excessive sweating and icy coldness. I thought it was stress as I was working long hours and in loads of pain. It was a terrifying time, yet I still thought I was "normal".

What happens when you dip into a warm bath? The quick warm-up will often bring the blue color change to the soles of my feet and tips of fingers. I think I've become used to the cold, icy feeling in my feet as it's been going on for many years before I started with PsA joint symptoms. I always thought I'd damaged my feet because I had a frostbite injury when I was 20 so always put my symptoms down to that. My hands I thought it was because I had worked outside in the cold for many years. I've gone to the doctor with attacks so severe that my foot could not be warmed no matter how I tried. It also has the unpleasant effect of feeling cold even though the skin is warm to the touch. My feet and hands also feel sweaty and wet, even though they are warm and dry. I can warm up and sweat instantly which then provokes another attack, so I change socks several times a day and wear layers of sweat-wicking socks and wool. I can't wear sandals even even in hot weather. I wear gloves most of the time. Sometimes a bad attack is not relieved even by applying heat; I have to plunge my core into a hot tub to get it to stop. I found it most distressing (well, still do) before I learned to manage it better because severe attacks leave me painful, numb and pins and needle-ish for hours. Now I make sure I: avoid getting upset (major trigger for me), add gloves and socks when I'm getting bad, plunge at least hands and feet into warm water when it's not resolving by itself, eat regularly (my face turns pale & blue if I don't eat as well as hands, feet). Typing and walking provokes it so I take frequent breaks. Waking up in the morning it's the first thing that happens in my hands, even though I'm warm; so annoying!!

I think I've learned to manage it well now, but at first I had no idea what was happening and was letting attacks go on so long that I was having extreme symptoms. Overall, I keep the temps high in the house now; I was a cool-house-wear-a-sweater person before. It's definitely a disturbed sensory experience!! If I stay outside too long and get a severe attack going, it is excruciatingly painful when the blood returns and hands feet will swell and tingle for 24 hrs or so and show signs of bruising. The vessels can rupture/leak if the blood returns too quickly, hence the bruising. The pain is along the lines of standing in ice water until your bones ache. The skin is numb, then tingling and icy, yet burning at the same time on warm up. I've had attacks completely up to the knee and wrist, respectively.

I have also had the opposite effect which is called erythromelegia. It's only happened once and was extremely unpleasant with a pain and itching in hands and feet beyond description. I don't know what provoked it but live (somewhat) in fear of it happening again.

I am a very emotional person and overly sensitive which I did not know was contributing to my Raynaud's attacks at first. The dynamics of my marriage and work, which were not going too well when I was getting sick, were contributing to the severity of my problems; I was very stressed out and fighting being sick by working harder and pushing myself in rather extreme ways. Things are better now and I manage stress much better with the help of my spouse (+ I don't work anymore) and meditation helps too.

Now, I think Raynaud's is the one thing that methotrexate has actually helped. I'm 9.5 months into treatment and this summer and fall I've had mostly warm extremities which is the first time in many years. The temps are dropping here now in the past week so have had a bit more trouble, but not as bad as it has been.

Well Mat, that's my book on Raynaud's. Hopefully something in here is helpful to you. Let me know if there is anything else you'd like to know.

xxAnna

barbara12

Sorry I cant help Mat...but hopefully it isn't what you think it is...xx

Mat48

Gosh thanks for that history Anna. And it is very interesting to me that the methotrexate has helped your Raynauds too. Of course yours is in a different league to mine. Until five years ago when my lifelong exczema disappeared I was a very hot blooded person who's hands my family would use to warm up on. I was always roasting and rarely wore gloves.

But even this time last year in Italy in an autumnal heat wave of 30 degrees I had to wear my arthritis gloves and socks in bed at night and couldn't bear the pool. Until these past few months flares to date have been preceded by icy white fingers and a deep all over chill. So things are changing but the stress factor seems to apply to my autoimmune system too so that the past few days have seen a return in pain socks (only way I can describe them) along with numbingly cold feet and legs.

As I said to you on your thread recently I am really accepting more and more that this is part of my faulty autoimmune system which includes RA and Hypothyroidism, mild secondary Sjogrens and perhaps Raynauds too. And I don't think it can be just coincidence that most of my current RA trouble is in my feet and ankles - same areas affected by icy cold. Its just a matter of whether the MTX (I had come down to 12.5 for 6 weeks when parasthesia started) caused this icy numbness and parasthesia or whether its all part of my connective tissue problems and MTX or some immunosupressant is needed to keep it controlled as I suspect.

A retired doctor who lives up here in summer also has very severe Raynauds and winters in Florida after taking early retirement because his makes him so ill. So I was aware of how serious a condition it can be for some. He has lost various peripheral parts from it I know. Mine is nothing like this but the constantly cold wet feet and legs do stress me out I admit. X

Mat48

Ps thanks Barbara - in a way I'm hoping its Raynauds because then I can get back to methotrexate without fearing further damage to my peripheral nervous system. I do love this forum for learning what others experience with their arthritis 8)

Boomer13

Those sound like well thought out conclusions Mat. Mine is also very severe when I'm starting a flare. Your doctor-friend's sounds terrible, poor man.

It's all so bloody confusing isn't it? Our biology is so complex.

Hope you are having a good day.xxAnna

Mat48

I am having a very good day thanks Anna. I mean its all relative of course but something in me has gelled - think its probably down to music (listening and singing in a small chamber choir tonight) and also working things out more and learning to read and better understand the rhythms of my own body and its strange new circulatory workings. I'm just learning to live with the icy legs and the crawling blighters around my ankles and accept that they are just how things are for now. Hopefully when my RA is better controlled again it will fade out.

And most of all getting two good nights in a row with six hour stretches of sleep yipee! :P Also my sister is coming tomorrow to stay for a week and I haven't seen her for over a year. We can't speak on the phone because she and my other sister are both profoundly deaf. So I'm relieved and excited that I should have enough energy to be a good big sis and hostess. This time last week - in the higher dose of Pred I was scared that I would be carted away having lost the plot over the past 3 months completely. So grateful to have you and others to speak to on here. Thank-you Anna and I do so hope your own brand of strangeness starts to bother you less as well.
Mat x

Boomer13

You're most welcome. I find music helps a lot, though I just listen. I have been known to lie against a speaker when the neuropathy stuff is bad. The vibration and feel of the music takes my mind off the weird sensations. Just thought I would share my strange "therapy".

Wonderful that you are sleeping better and feeling more settled. I hope it continues and you have a good visit with your sister.

Anna

Mat48

Thanks Anna - I will bear your therapy in mind for all things unpleasant in the sensory dept. Sleep well. Mat x