Hi lovely people
Hope you’re managing to stay warm today .
Would appreciate any thoughts on funny feet and what could cause them to be white / red / blueish toes . Both hurt like walking on marbles . Dr said doesn’t fit with raynaulds as he thinks they would hurt more when they warm up and they hurt most of time along with throbbing calf pain
Gp said pulses feel fine .
Take care all xx 😺
Hi Tiggywoos 👋
Does weather changes affect your feet and stress sleeplessness after illness or being active/overdoing???
There is a rare combo of conditions that are cyclical. Raynauds is part as is Erythromylalgia.
The aforementioned are some of the triggers that can cause the colors you described.
With EM/Erythromyalalgia there is usually swelling lobster 🦞 red color and often pain even a shiny look to skin in a flare up. This is a blood/blood vessel disease that floods the affected area with blood. When cycling with Raynauds you can have the white/blue/purple colorations in a crazy kaleidoscope /or varied array of colors.
Some afflicted only have this in feet/legs while others hands/feet and rarest anywhere it pleases as in my case.
If the above describes some/all of your experiences you may wish to visit :
@burning hands and feet .org
Or
@NORD. org
for further details.
There is also:
The Erythromelalgia Association
@TEA.org
I hope these links come up in blue…just haven’t been able to get this to work but a few times for me. If not my apologies.
I would keep taking good pics of your visible proof of various colorations. Keep a detailed log of experiences with dates times weather conditions stressors whatever is going on during your experiences.
Take this log along with pics to appts to explain this phenomenon to your GP.
Hopefully you’ll get proper help soon.
Best wishes. Take care stay safe.
Love and prayers.
EJ 🤗♥️🥰🙏🕊🤝🌿🌸🦋
Honeybug what a wonderful human being you are 🙏👼☺️
Thank you so much for detailed reply . Interesting you ask about temperature as the legs hate the cold but they also don’t like the warm water either (which is such a shame as I love a bath )
The legs have troubled me for over 3 years .. feet since October . Started with a bit of twitching , now angry and painful so I will definitely look at your helpful links .
Standing still is a no no for feet as go purple /red and legs throb .
I will keep you posted on any worthwhile updates (don’t hold breath)
Sending you big hug. xxxx
Thank you for your sweet reply Tw 🤗I started having problems at birth with both. Never knew what was going on.
The RP Raynauds Phenomenon was from my dad. The IEM inherited erythremalalgia was from my late mother (unbeknownst to her)passed in 1998 I didn’t have confirmation via double DNA testing and consultation among world colleagues until 2014 after 60+ years of being dismissed by multiple doctors.
I’ll be 71 in April and I’m amazed at how many people are still being dismissed over these conditions.
As for IEM at the time I got my diagnosis I was only 1 of 3 worldwide with it due to its rarity.
So if at all possible go private to a top Rheumatologist it would be best.
I will say I am on Gabapentin and Paxil which helps me with most of my symptoms of IEM.
I don’t want anyone else to go through their lifetime suffering from being undiagnosed and untreated if I can in anyway help it. Brain fog prevents recalling if I told you I’m across the pond.
I just said a prayer for you my new friend.
Love & prayers.
EJ 🤗♥️🥰🙏🕊🤝❤️🩹🌿🌸🦋
Tw I also meant to say that in my early 30s as my IEM progressed I was able to detect heat signatures from appliance cords not plugs. I can walk by things now and sense heat from items others have no clue exists. EJ 🥰
What a fountain of knowledge you are and I’m so glad I asked the question as I have no doubt others will be suffering . You will have helped lots of others for sure 😊😊. Gp mentioned gabapentin today and said he will perscribe after abpi test next week .
You’re prayers are so welcomed 🙏.. I also feel like you regarding being able to offer any knowledge I have so that others don’t suffer . How on earth you kept your sanity after all those years goodness knows .
Sending you a super big hug 🤗 😺xxx
Thank you hun. I’m glad you were offered gaba. Regarding the Paxil it was prescribed for my worst flares where my head is attacked by billions of needle pricks extreme heat 🥵 as in a severe burn and I have difficulty breathing. I also forgot to mention that salt/sodium is a trigger too a worse one as nearly everything we buy has it.
The Paxil is classified as an antidepressant but like most meds it has multiple condition uses.
As for keeping my sanity through 6+ decades of seeking answers/ help…I cried an ocean of tears and bore it all with my wonderful hubby of 52+ years and my strong Faith in Him.
🥰
EJ
Now that’s interesting as had a hangover headache every morning for years and rheumatologist registrar mentioned Prozac . Hubby sounds like an absolute 💎 xxxx
Probably loss of fat pads over areas of bone, which is common in scleroderma
Sorry to hear your struggling and in pain. I’m a HCPC registered Podiatrist. Did your GP carry out any other vascular tests? Sound pulses using a Doppler, suggest a ABPI test to rule out lower limb ischaemia? Is the calf pain worse when you are walking especially up an incline? As that could indicate intermittent claudication, a peripheral arterial disorder. Which pulses did he palpate? GP’s I’m afraid are notoriously bad at lower limb examinations. The walking on marbles sensation maybe due to atrophy of the fibrofatty padding that protects the metatarsal heads and joints. The only way to treat this is through cushioned insoles, good supportive cushioned soled shoes and padded socks (hiking socks tend to have padded/cushioned foot bed).
Thanks for this Midgebite21 as i have this too Tiggywoos. Awful for you and anyone who has it. Your foot pic could be mine. Midgebite21, does severe lower leg and foot cramp also happen with ischemia? Thanks so much, D
Yes cramping is very common in ischaemia.
Oh. V good to know. In agony at night but even happened on waking up (for thousandth time) this morning. Will discuss with my rheumy on val’s day appointment! Thank you so much. Hope you are doing ok.
Thank you so much for taking time to reply . Gp took pulses on ankles and said they were fine but I’m booked in for nurse to do ABPI test Wednesday .
He said because I’m not overweight /smoker/ v unlikely to be vascular . I do get blue lips indoors if it’s not really hot and hands feet always freezing so I don’t think my circulation is great .
Did have mri of low legs as have myositis antibody but hospital said it was “normal “ . Would vascular problems show on mri I wonder ?
Feet are better when I’ve got my trainers and thick socks on . Feet are relatively new problem (well since October ) but night time leg pain has been 3 years and worse over last year . I will walk uphill and see how calves feel !!! Thanks so much 🙏🙏
When I first saw your picture it was a Eureka moment for me Tiggy 🤗Your foot looks exactly like mine!!
I've just shown it to my husband n he said he thought it was my foot!! 😹
So glad you posted about this..thank you..I'm learning a lot 🌈😽😽xx
Oh KK I do feel for you as it’s horrid isn’t it 😟. I have some very special pictures of blotchy red and white feet too 😂. We have to try to smile don’t we . Sending you big hug xxxxx
Big hug to you 🤗At the start of my lupus journey I had ulceration on the soles of both feet n I just thought it was damage from that!! Yes it is horrid (I would use more colourful language though!!)
Hope you get some answers soon Tiggy 💜🌈😽😽xx
Yes trust me the language is pretty colourful ! 🚿 of 💩 😂. God that must of been so painful 😣 . I hope you have a lovely Sunday . xxx 😻😘
Morning chick hope you’re doing ok 😘. Just to say I’m having a phone call this morning from rheumatologist and he’s got the foot pics so I’ll let you know what he says In case it can help you . Big hugs 🤗 xx
Ok lovely 🤗Hope your appointment goes well n you get some answers 🤞Big 🤗🤗backatcha lady!! 💜🌈😽😽Xx
Thanks chick 🐣.dreading it to be honest but have some notes 😻😻😻
I had a phone call rheumy appt last week which went reasonably well. Deep breaths hun..you've got this!! Just remember you're in charge 😉 I'm here if u need to talk 💜🌈😽😽xx
Angel 👼 ♥️
Pretty dreadful call .. said antibodies come back negative so the previous test must have been false positive 🤷♀️ . Ultra sound and X-ray of feet luckily I’ve got insurance so won’t have to use nhs resources what with there being nothing wrong with me 🙃😳. I’ll left you know if ultrasound shows up any gems Big hugs xxx
Oh mate..I'm sorry to hear that 😔 Give yourself time to process it..you rest up now n recoup your spoons for the next leg of your journey. Gentle 🤗🤗🤗🤗 You're not alone right..the autoimmune highway is a rocky road!! 💜🌈😽😽Xx
Thank you so much KK . Yes I’ve mentally tidied the spoons and put the appointment out of my head .I’m so so grateful for all the support from the group and from you today .
Big hugs , lots of chocolate , hot tea and cuddles with tiggy 🧚♀️😻😘👼xx
Hi Tiggywoos, thanks for posting the picture of your foot,I have the same problem but also in my finger pads and
palms, so painful. Walking is so painful too, I now understand
when people say it is like walking on a pebbled beach!
I didn’t know what it was so I mentioned it to my Consultant, she said it was just my Raynauds but it doesn’t exactly feel like it so didn’t know what to think.
Hi again Tiggywoos, hope you don’t mind me asking but you said your results came back negative does this mean they are saying you don’t have Systemic Sclerosis or are they going to still monitor you. So sorry to hear this, nobody wants this diagnosis but if you are living with the symptoms you need some form of treatment.
Sorry if I have misunderstood your last post but I just want to say I’m also living in limbo and my heart goes out to you. I was in an awful state after a very negative Consultation recently, but like you I dusted my self down
and thought I’ve just got to get on with my non life , ha ha
😢. I’ve got a lung function and six minute walk test next
week and I’m dreading the walk test as my feet are so painful. Keep going and post to let us know how you are coping.
I’ve just read that apparently 3 cups of ‘proper coffee’
per day, no more, will enable us to live 8-10 years longer!!
Still prefer my hot cup of ‘Punjana’ tea ☕️
Don’t mind you asking at all 😊I had been suffering with facial rash for about 3 years then in 2020 the face swelled so much my gp admitted me to hospital with autoimmune hepatitis but they sent me home . Cut long story shortish got diagnosed with lupus privately and put on hydroxy, covid hit so had to see different rheumatologist who diagnosed scleroderma from a positive pml 75 antibody test . He said I should be monitored by nhs so they re ran tests and said I obviously had had a false positive as I now test negative !
Not a clue what to do now as face still swells , feet are real issue and live with waking headaches . Apparently I have a “nerve “ issue nothing autoimmune at all .
I totally feel for you it’s horrid . Please do private message me if you need to share / want any other info . Lots of other things happened in between but won’t bore you with those !
Big hugs x
Omg it gets more and more confusing doesn’t it!From what I understand you can have a false positive, a positive result but not actually have Systemic Sclerosis and you can also have a negative result but still have
SSc and that a diagnosis is also based very much on symptoms. I stand to be corrected though.
Yes I would like to private message as I’m interested to
hear your story but I’m not sure how we go about exchanging contact details. I’m absolutely clueless about tech., details! I am in touch with Positivedaybyday but we worked out that she used to live in my village so we met up locally. Must say she has been great and has given me so much help and info plus confidence to go forward and she has been through so much herself.
I’ve also got some info about your headaches which may or may not help you but too long to post here.
Cold feet ☃️
Ice cold feet-Advice about socks please
Sore on elbow
Raynaulds primary but constantly numb/tingling hands and feet
Face Changes. What is going on?
