Sand paper like cold feet and numb thigh, anyone?

[Amakura]

And I'm not referring to Kentucky Fried Chicken family bucket either, I may hasten to add!

I havent contacted my GP or Rheumatologist about this because I've only just managed - it took me 2 to 3 weeks - to resolve my other symptoms via this route. The negotiations that took place were more difficult, I'm sure, than the EU and UK Brexit deal discussions. Also, to be fair, in the grand scale of things, my ailments are not very important and do not require urgent assistance (in my non medical opinion). So, I was hoping to receive some collective wisdom / guidance from the wonderful and amazing Lupus UK forum instead.

My feet look and feel like sandpaper from Homebase. My entire body, especially my feet, are absolutely freezing. You would not believe the clothing I have on and it's not even winter. My toes are painted with nail varnish, so I cannot check to see if this area has turned blue. Socks dont even work. They are hard to put on due to the crackly (if there is any such word) skin. I managed to purchase some cream especially formulated for problematic skin for my feet but it just sinks into the cracks and now both my feet resemble some sort of mosaic art sculpture from the Victoria and Albert Museum. I've soaked it in warm epsom salt water, no difference. I even positioned my feet in front of an electric fan heater. Again, they are still stone cold.

So, my thigh - in particular - my left thigh, has decided it wants to go to sleep on me. It's numb for the majority of the evening and whilst I am sleeping also. At least, it has the audacity to stay awake during the day but its annoying.

Not sure what to do! Definitely don't need this right now.

I'm sure there's a very simple solution to this...surely, right?

NB: My 2 to 3 week discussions with the GP et al was due to - what I believe - was/is a flare. So, is it a case of the rest of my body, is possibly feeling left out and wanting to join the flare partay, as well?

[Hidden]

I’m not really able to answer your questions Amakura but your humorous account of them made me smile. I too have strange skin occurrences but not sure what’s going on. In my case I’m guessing it’s a mixture of my connective tissue diseases being very hyperactive just now. I was able to describe them over the phone to my dermatologist and she thinks it’s some type of scleroderma. For me this overlaps with small fibre neuropathy.

When my skin feels cold and numb it’s usually because my core is cold. If I’m up to it then find a really good dance or spin on my exercise bike or running up and down our stairs all help.. When it burns I use biofeeze or dermacool gel.

But I know all this because I’ve had it going on for so long.

However as these symptoms are new for you then I don’t think you’ve any choice but to go through the Brexit negotiations again. There’s no one else around to do the job unfortunately and loss of sensation and noticeable skin changes do need medical input if you have no diagnosed conditions that could explain them.

[Amakura in reply to Hidden]

I'm trying out a new technique of addressing my chronic illness with humour instead of total despair or otherwise, I've started to notice, it stresses me out. And we all know that stress isnt good for us, right! Along the way, I'm sure I'll have to tweak this new method, as its all new to me.

Funny you should mention warming up your core because I have tried this by attempting to do Power Yoga and, stretching, cleaning etc. but my body / core immediately warms up for a short period and then I become really cold. I can't maintain the warmth, if that makes sense.

You are right, I will most probably have to re-enter into Brexit negotiations again! The thought of it thrills me to bits [insert sarcasm] but in all honesty, it seems that I have no choice. However, you can always pre-empt their standard questions and their responses, such as how long has this been going on for? I've found the shorter the period, the less likely they will take it seriously. It's been going on for approximately 2 weeks but has happened before but I decided to keep stum about it, so I'll give it a further two weeks and then I'll put in a call.

Thank you

[Hidden in reply to Amakura]

Agree about dark humour and sanity - not sure about the 2 week rule though. Remember they keep saying that there is concern that all non Covid related conditions might be running amok so please report them. Basically things are changing apace and Brexit negotiations have been postponed😉🤷🏼‍♀️😉

[Amakura in reply to Hidden]

Stalwart lol - you've got the same sense of humour as myself and I'm here for it and I absolutely love it!!!

I've got my small red case, I'm gonna get my papers ready, drink some water, tell Gerrard the butler [in my dreams] to book a call with the Rheumatologist and wait patiently for the phone to call. You are right, non covid related issues have drastically decreased and I heard on the wireless, medical professionals, begging (well, not literally - slight exaggeration) people to continue to present themselves where necessary.

Thank you, again

x

[Hidden in reply to Amakura]

All good - especially the red case. But don’t forget your passport and enjoy not having to wait in the customs queue for a while yet 😉🙃😎

[whisperit]

Hello Amakura

Yes. they should have got us lot in to do the Brexit negotiations, we're more experienced at squeezing concessions out of recalcitrant [aertners than any career politician.

Have you had these symptoms before? I'd agree with Hidden that warming your core will help your body out - I find that it takes a lot of energy to keep warm sometimes.

Being a lupie may have made me over-vigilant, but I'd also want to discuss with a medic other possibilities. Obviously, the cold feet could be a Raynaud's type symptom - not often serious, but worth keeping an eye on, and another reason to look after your toes. But I also have a history of polymyositis, the first definite sign of which was numbness and tingling in my thigh muscle. For me, anything like that would have me requesting a CK level immediately, in case its a myositis flare. That's unlikely for you - myositis is pretty rare, even in lupies, but if you feel concerned, why not ask?

Stay warm! x

[Amakura in reply to whisperit]

Actually, I have also been diagnosed with orbital myositis (OM). I was diagnosed with this prior to the Lupus and secondary Sjorgrens. When the orbital myositis first occured, I literally lost all my muscle - glutes, legs, arms - everything was happily flapping in the wind. It all happened over night. For some strange reason, probably due to my temporary loss of sight in my left eye and presenting myself at the eye A&E, everyone concentrated on the eye and my other symptoms took a back seat. I was in a very, very bad way.

I've had the tingling and numbness in my thigh on and off since first being diagnosed with OM but I've never brought it to their (Rheumatologist's) attention, as I found my symptom shopping bag was not only irritating but I dont know if you used to or sometimes feel this way, I question myself as to whether I'm being a hypochondriac. Possibly, a bit far fetched but I'm relatively new to chronic illnesses, as I was diagnosed throughout 2018 and finally early last year. So, I'm never too sure what to leave back and what to actually divulge to the medical professionals. My aim is to always to ensure that they take me seriously and do not place me in the permanent bracket of 'here she goes again [rolls eyes]'. I suppose, this all stems from fighting so damn hard - at the beginning, despite being weak, for someone to actually take my illness seriously. I'm now realising this is the norm for many lupus warriors. Maybe omitting information from them is the wrong attitude to have. Time for a change perhaps, as I'm the only one suffering.

The thigh numbness, in particular, occured at the same time as other symptoms which I deemed - as being a medical person trained extensively by Google search haha - as something trivial but this time round, its not subsiding. I often slap my thigh, like a cow girl, to ensure that its still alive.

As I mentioned in Stalwart7's lovely post, I'm going to give it a further two weeks, as I'm starting to find with my Lupus doctors that if a person hasnt had symptoms for a particular amount of time, they just brush it underneath the table. Thinking aloud here but as I've been diagnosed with orbital myositis, and taking into consideration what you have said, there's a strong possibility that they will take it on board.

Back to Brexit negotiations it is!

Thank you so much

[whisperit in reply to Amakura]

Amakura - your experience of witholding symptoms from clinicians is very, very familiar to me, and yes, I'm sure it's common to most lupies. It's part of defending ourselves from the impact of clinicians dismissing or downplaying our worries - they have their own agenda and so many seem to have neither the time nor the inclination to hear ours.

An even more toxic result is that we internalise that dismissal and start thinking we are hypochondriacs or delusional, get depressed and lose self-esteem.

What's helped me with this is a) connecting and sharing stories with people here b) making a list of what I want discussed before any consultation and insisting that the clinician provide a cogent rationale for any decision or judgement he reaches. c) paying for additional tests and opinions when I'm unhappy with my clinician's decisions. I also spend an inordinate amount of time and energy making sure I get copies of all reports and test results and generally being a nuisance. Bitter experience shows that my intuitions are usually right and if I allow a clinician to skate over a worry I have, the only person who'll suffer is me.

It sounds like your disease has already had serious impacts on your life. You deserve to be listened to, and to occupy that chair in the consultant's office for as long as you need to feel happy s/he's dealt with all your worries. x

[Amakura in reply to whisperit]

Thank you so much. In the end, and I wish i acted sooner with more gusto as outlined in your thoughtful response, it was a lupus flare possibly brought on by my recently discovered by accident, overly and unusually dominant oestrogen levels. I'm now on a course of steroids, and thankfully I am nice and warm, clear headed, my skin is moist, scalp is no longer sore, able to breathe, no eye pain, no chest pains, sleep has returned, weakness is just a memory and my hair has stopped falling out plus my thigh issues have subsided. Literally, I was on a downward spiral.

My emergency consultation was over the phone but rightfully so, everyone is being overly cautious due to the virus, so further tests have been put on hold and I've been advised to take a herbal remedy in the interim to possibly tame the oestrogen levels. Admittedly, the medical professional that is leading my case is someone that can be seen privately as well. Therefore, it would make no difference, I think(?). The virus pandemic which has produced a backlog of appointments has put the investigation of my care on hold. Apparently, my case is very complicated - like all autoimmune cases, right - so it warrants further hospital investigations (I've also got a rare skin/hormone related disease as well but its best buddy's with my Lupus and doesn't antagonise it in anyway to date). I've been requested to utilise the hospital helpline services instead in the meantime, if needed.

Interestingly, I've read on a different post that hormones can trigger lupus flares and more than likely - it seems - my orbital myositis as well.

Since starting the steroids, I've had no pain and my eye sight is crystal clear. Just waiting for the herbal remedy to kick in which can take up to 3 months.

My course of steroids is brief due to bone density etc but upon tapering, and using your response as a blueprint, I will continuously be on their case. I don't want to be back in a world of pain, fatigue, confusion and looking like a flea infested chiwawa. Not a good look!!.. 😳

Again thank you. Just wanted to post an update for those who may have the same issue and are searching for reassurance or a solution.

X

[whisperit in reply to Amakura]

Well done you! It often takes a lot of courage to insist on being heard. So pleased you have found some improvement. Let us know how things go from here on. x