Newly diagnosed.. Are these symptoms normal?

[slothpie]

Hi there, I'm new to this and thought I'd write my first post as I have a few questions.

So, I first got my symptoms back in 2012 after I got on a flight to Portugal and they have persisted ever since. My legs get the strange red,purple pattern as in the photos (sorry for bad quality - it is really hard to photograph) and feel very heavy, itchy and painful. I can't shower without my legs experiencing this, and walking for a while or standing for periods of time also brings on symptoms.

Since then, my symptoms have progressed and I now get red, sore feet, puffy red hands, and weak feeling knuckles. I also experience really bad fatigue - I would work a 4 hour shift in a shop and come home and fall asleep at like 6pm.

I saw my specialist yesterday, and he said my symptoms seem to point towards Raynaud's although he thinks I may have an underlying condition.

I was just wondering if these symptoms are what other people experience with their Raynaud's, how other people deal with the difficulty being in both cold and hot temperatures, and how you cope with waiting for a diagnosis?

[Creaky-Paddler]

Hi

I've had raynauds for many years and mostly manage without medication as it made my feet and hands swell and my blood pressure was too low, I kept getting light headed.

I only take the medication as a last resort now if I get an outbreak of chilblains.

Until last year my raynauds was just the white finger and numbness for up to an hour and then normal again.

Now though I have swollen hands and feet and one hand seems to be permanently redder than the other.

I've bought some compression gloves by thermoskin that help ease the swelling in my hands and keep them at a steady temperature, they haven't stopped the white finger attacks though.

I have the same mottled skin as you (I think, looking at your photo) I have been told mine is livedo reticularis which can be related to a few other medical conditions.

Write down all the symptoms you notice and take the note to your next specialist appointment

I hope you get some answers soon.

Donna

[Hidden in reply to Creaky-Paddler]

It might be worth looking at APS/ Hughes Syndrome -especially if you've ever had blood clots or suffered miscarriages, thrombosis, stroke or are also hypothyroid. I have Livedo in legs just the same as yours but so far my confirmed diagnosis are Sjogrens Syndrome and Hypothyroidism. My Raynauds only started at the same time as I was previously misdiagnosed with RA five years ago. It's definitely something to talk about with a rheumatologist as they cab then test you for Hughes Syndrome/ APS.

[zenabb]

I have had, still have all that. You had better wait for the diagnosis. Meanwhile cope with symptoms (I don't think it has anything to do with Portugal). If you cope with the symptoms and relieve them as far as possible it helps with the tiredness. Keep your sense of humour it's important. Things come and go in cycles. They don't remain the same. Keep warm.

[tall-tim]

My Scleroderma began as painful feet and puffy hands. I think it would be a good idea to ask your GP to refer you for a battery of tests to check for Scleroderma. You could assume it is this, until proved otherwise.

As for hot & cold, I avoid baths and showers so not to inflame my condition. It's amazing how easy it is to do without them, provided you regularly keep your sweaty parts clean and use gloves when sticking your hands in hot or cold water.

[Whistler81 in reply to tall-tim]

Ditto with feet and hands. Fingers are worse in bed at night and early morning … when I’m at my warmest.

Are you on any therapy? Has it helped?

[slothpie in reply to Whistler81]

Hi I know you weren't replying to me (original poster) but if it helps I also had burning pain in my feet (especially in bed at night) and swollen hands when I was hot. I ended up diagnosed with POTS and Erythromelalgia. I would look into Erythromelalgia - I am on amitriptyline for it and rarely have any pain. It took like 5 years to get diagnosed so best of luck to you!

[BettyTaylorStaffs]

Hello Slothpie

I'm recently diagnosed too. I've had odd systems for several years but my GP never put them all together. Eventually I was referred to my local hospital's rheumatology department where they were able to view the whole picture and all was made clear. And yes, I would say your systems are 'normal'. I began with a strange rash that came and went on my feet - it eventually crept up above my knees and sometimes it mysteriously disappeared. My GP thought it some sort of allergy. However it turns out it is all part of the Raynaud's Scleroderma thing. I've been told I have C.R.E.S.T. syndrome i.e. the full blown business (lucky me!). I've also learned that it's all difficult to diagnose and fairly uncommon so my GP isn't at fault.

Comparing symptoms with someone else's may not give us the answers we're looking for. It's such a complex disease I think everyone's' symptoms will be a little bit different. I've read loads of stuff on this website about the condition and appreciate that it is, as the rheumatologist told me, rather complex.

I hope you manage to feel well. My philosophy now is, when I feel rubbish I stay home and rest and on good days I do more interesting stuff. I guess that's easy to say as I'm retired now (76) but if you are still working I hope you don't get too many bad days.

[littleones]

Hi I also get this and told its Raynaud's did you have any luck in finding out anything as it would be of great help to me please.

[slothpie in reply to littleones]

Hi!

I'm still in the process of being tested (all blood tests are coming up negative despite my symptoms progressing) and I've become a lot more active in looking for things myself.

It might be worth looking at POTS (postural orthostatic tachycardia syndrome)! It can have the same sort of cyanosis and discolouration as my photos above! It's when your heart rate increases on standing so if you think symptoms fit it might be worth doing a poor man's tilt table test yourself or asking you doctor if they'll consider that too! My doctor says it can occur quite commonly with Raynaud's too!

Some links I found useful for looking into POTS:

potsgrrl.blogspot.co.uk/p/w... (she has a very extreme case but so much info on what it is like and how you can take an active approach to dealing with it)

photographingpots.wordpress... (she has photos of what it looks like so you can see for yourself if it matches up)

dynainc.org/docs/potsconcis... (a scientific paper on POTS - explains a bit about how it arises and the different types)

However, my doctor has said that really there aren't many treatments for POTS (he is reluctant to put me on meds because I'm fairly young and they would be for life) so try to look at graded exercise plans and increasing your salt and fluid intake!

Feel free to message me if you want to talk more as that is all just a brief bit about it!

All the best!

[slothpie]

Thank you everyone for your replies!

It's a long process trying to get diagnosed, and I'm only just starting to realise how complex this all is. This community is so useful for us all so thank you all so much!

[littleones]

I've been finding the exact same things myself been trying to find the reasons behind my symptoms for a year and a half had many blood tests which all come back normal too and went to royal free early this year and was told I am having vaso spasms as I get ice cold feet and toes go dark purple when I sit down,went back to gp and his same as yours as I'm only 31 he don't really want to give me meds either and when I mentioned about my knees going a reddish purple colour with mottling on legs he was not really interested its very hard to get anywhere I find.I did already mention pots to a nurse I see and she ruled it out straight away I have even had a Doppler test done as I was worried at one stage it was clotting but that came back normal too.Its strange to figure out what is causing it and it does stop me wearing certain clothes as I tend to hide it 😕 I also get pins and needles a lot in lower legs and feet again gp don't really say much so I have no idea,am just awaing another rheumatology appointment not till august though.I find this site to be ever so helpful.Thankyou for getting back to me and I wish you well and all the very best.If you do find out any other info please let me know.☺ take care.

[slothpie in reply to littleones]

Yeah it is so hard to get any sort of answers whatsoever! For me, I had to take heart rate measurements with my own blood pressure cuff just after waking to see the effects of it, and I think a tilt table testis needed to actually diagnose so if you think it might give some answers then maybe try taking some heart rate measurements the first time you stand in the morning and if you notice anything you can maybe push your rheumatologist to get a tilt table test done!

I get the pins and needles too! When my symptoms started around 4 years ago that was the sensation I got when the discolouration appeared, but over the last year it has become a really painful burning instead. I'm always worried that it might be neurological (like small fiber neuropathy) because of the weird sensations - might try to push for a nerve conduction test if it keeps getting worse.

The waiting in between appointments can be long and really difficult. I've had 3 appointments with my rheumatologist over the last year and he has just referred me to a colleague for a second opinion hoping fresh eyes might spot something he is missing. Hopefully you start getting somewhere with your diagnosis!! I will get in touch if I ever get to the bottom of what's going on.

Hope you get some sort of answers soon!!