Purple feet

[Starrynightz]

has anyone experienced their feet and legs turning purple with tingling and zap feelings when putting weight in them?

[Jofisher]

Yes all sorts of weird stuff including your issues

[Lucy-15]

Hey there. When I overdo it ! My legs are tingling some muscle spasms/jerks. . Really painful shooting / zapping nerve pain etc. But not the purple. Hope you are seeing a medical person about that soon ? Take care eh. Lucy.

[Brokendeer]

Hi, it has nothing to do with general FND symptoms, what you are experiencing is poor circulation, some of which is genetic and some to due with prolonged pressure on the nerves typically affecting just the peripheral nervous system i.e longer nerve routes like legs/feet and arms/hands.

Try not to hold a certain body posture too long; especially when sitting, laying or standing. You should find the circulation flow improves and the `re-awaking' nerves less stinging/zappy/painful when you move about again and put pressure back onto your limbs.

Look for the calm in the Storm!

[Starrynightz in reply to Brokendeer]

I noticed the only time it happens is if I’m standing, walking around (which is more like a hobble for me since I cannot walk without an abnormal gait) and if I am sitting upright in a chair. They turn purple and if I don’t lay down and elevate my feet they start to swell and it’s very painful. What’s interesting is I’m also experiencing abnormal blood pressure and postural tachycardia so clearly there’s a problem with blood flow.

[Brokendeer in reply to Starrynightz]

Hi yes, what you have further described is not just natural occurring poor circulation.

It definitely sounds like you have a compressed nerve or nerves - I would hazard a guess and say higher up than the legs Spine or Chest?

There is a medical test for checking blood flow and circulation in the legs, called a Doppler Test - its like an special version of Ultrasound. It can be performed by Nurse Practitioners and as an Outpatient. So you could get that done to rule out any actual legs issues.

I would advise a heart health check up with ECG as well, as swelling legs can result from heart inefficiencies.

Good luck!

Look for the calm in the Storm!

[Starrynightz in reply to Brokendeer]

Thank you for your response. I do agree and did receive a blood clot ultrasound check but only in the groin thigh area. It seems whatever happens is only ever from the knee down. I’m also unable to do any physical movements without going into tachycardia. Sitting upright and eating will put me in tachycardia. I was in the hospital for a week experiencing this and ekg shows low voltage, Supraventical tachycardia, right atrial enlargement, and old anyerioseptal infarction. The doctors ignored it and sent me home saying I needed to follow up outpatient and that my nervous system isn’t working properly but they don’t know why. Meanwhile I basically can’t do anything without going into tachycardia and getting so dizzy I lose vision and nearly black out and have to lay down. How can drs just leave people in this state and do nothing?

[bookish in reply to Starrynightz]

I hope you can find a better doctor. This sounds like POTS/Dysautonomia and you may find this interesting youtube.com/watch?v=isOb4Su...(Not working as expected?). Lots of links to Sjogren's, (commonly overlooked/poorly diagnosed) so those folks are well informed. Best wishes

[dbar126]

Hi, I started having these symptoms after being Dx. with FND. I have seen specialists and received many tests for any circulation issues (ultrasounds, MRI, MRAs) all that showed negative of any circulatory issues. My feet turn purple/blue and I get numb and tingle. My neurologist and vascular specialists say its FND related. I just wear no.n-skid socks, elevate legs and try to move around as much as possible. Hope this helps!😀😱

[Starrynightz in reply to dbar126]

Did they ever check your blood pressure or do a tilt table test? I honestly don’t think it’s related to FND, I think it’s POTS and maybe POTS is common along with FND but FND is just a disorder to describe symptoms not of specification so it would be nice to know the true cause of abnormal nervous system function. I personally think it’s an autoimmune response. I definitely have to keep my legs elevated often, thank you for your reply.

[dbar126]

Yes I have had the tilt table test (negative) and my blood pressure is always very low (90/60 and lower as baseline). Wondered about POTS too but have not been Dx. with it. ?Yes, I agree with wanting to find out true cause of abnormal nervous system function. Are you in the US?

[Starrynightz in reply to dbar126]

Yes I am in the US. I spent years experiencing drops in blood pressure along with unusual symptoms that were ignored. Now it’s causing so many other problems. I think low blood pressure needs to be recognized and treated instead of dismissed as being “normal” or “better than high blood pressure”

[VR053]

Hi!Yes I've read your comments too and it sounds a lot like POTS which is what I have along with FND so I'm pretty sure that's what's happening. When it happens with me like the blood pooling in my legs whenever I stand or sit up right, it does a very painful tingling and makes my legs purple and red and it last until I lay down or something.

It's especially POTS if you feel dizzy during it or any other symptoms like your heart rate increasing or having a hard time breathing.

I hope this helps. Let me know what you think!

[Starrynightz in reply to VR053]

Yes! I go into tachycardia just from standing. I have to stay in a recliner so my legs are up and my head is slightly tilted back. Just sitting upright gives me in tachycardia, my blood pressure will either drop very low or go very high, I get so dizzy my vision gets blurry and black and I almost lose consciousness, I can also feel my heart race and sometimes get chest pain and start yawning or get super fatigued suddenly. I can stand or walk for no more than 5 minutes. It’s really negatively effecting my life.

[VR053 in reply to Starrynightz]

Then yes that sounds a lot like POTS because those were my starting symptoms and they still happen for me from time to time but I actually faint multiple times a day and I can't sit or stand for longer than around 1 hour because then it makes me feel worse. And they all told me to keep my legs elevated but that didn't really help me and neither did compression socks cause it's different for everybody. But I would get checked to see if you can get a diagnosis of it or something else if it's not POTS. And I tried like five medications but they made things worse so I can't take medicine and they also say to do cardio and take salt tablets but both of those made it worse for me so you can try what they say but I don't advise it because doctors don't really know how you feel so go by how your body feels. Let me know if this helps or if you need any more advice or anything

[Starrynightz in reply to VR053]

Yes I have similar issues. I am super sensitive to medications probably because I have gastroparesis and so do not absorb properly. The beta blockers dropped my blood pressure too low and the fludrocortisone salt steroid caused horrible stomach and leg pains and I was told to stop taking it. Thanks so much for your response, if anything it’s comforting to know I’m not the only one experiencing these things. I can’t help but think there’s a bigger cause to it. Has anyone ever suspected you might have an autoimmune condition that causes it?

[VR053 in reply to Starrynightz]

Yeah the exact thing happened to me when I took the salt tablets and tried beta blockers it made everything worse, the salt made me throw up and had tons of stomach pain and leg pain like you and the beta blockers caused a lot of different things like make me faint more and just increased my symptoms a lot. Of course I love to help and hear about others stories and symptoms. It is comforting for me too especially being young and still figuring out my health and trying to find others to relate to, I'm very glad I get to talk to people like you. Not really, my doctor's all suspected that some of my symptoms were different from POTS but they never looked into it which they should've cause all the symptoms that were different, they have gotten way worse which I think it's from FND but I could possibly have an autoimmune disorder that they're missing. Do you have an autoimmune disorder?

[Starrynightz in reply to VR053]

I had a spinal cord injury in my early 20’s but also had a lot of health issues as a baby. Nothing I remember but my mother informed me I had a seizure as a baby, I was always getting infections and would break out in a rash but the doctors didn’t know what it was. I also had a severe kidney infection around age 12 that I was hospitalized for so I have a long history of health problems since birth. My neurologist and rheumatologist for the past 15 years say they have no doubt I have an autoimmune condition but unfortunately because of insurance changes and then changing doctors or being too sick to even get to appointments I have not gotten very far. I just moved to Florida too so now I’m starting from scratch which is probably why I’m just getting a FND thrown at me but personally I think it’s a bit insulting. Just because someone doesn’t have any evident brain damage or lesions shouldn’t mean neurologist exclude disease. Especially when in my case, I have physical damage to other organs and tissues, optic nerve damage in my right eye, chronic tendinitis in my knees, gastroparesis (paralyzed stomach muscle and family history that includes chrohns disease and diabetes), biopsies of my stomach and esophagus that show damage caused by chronic inflammation. It’s frustrating that doctors seem to just wait until your too sick to have any dignity left before they diagnose and treat properly. My other doctors treated me with steroids mostly which did help bring me some improvement but now of course I’m getting nothing because they are trying to say it’s FND. My mother has RA, thyroid disease, gout, and a list of auto immune diseases. My father also has rare diseases, sarcoidosis and ankylosis spondylitis, he basically has a metal spine from multiple reconstruct surgeries. None of which ever properly showed up in testing and were only accidentally found when they became so severe as to need emergency surgeries and care. So there is a lot of genetic predispositions. These doctors don’t treat properly, they should follow the Mereck Manual to properly diagnose and treat but they don’t. They dismiss symptoms and are quick to just diagnose people with the trendiest thing at the time instead of properly documenting and testing because it’s too much paperwork to submit to insurance. Of course not all doctors, occasionally you find the good ones but for the most part the medical system is sadly burnt out and unreliable.

[VR053 in reply to Starrynightz]

Wow that is a lot to deal with, I'm sorry you still go through that and don't have good history of health. Thank you for sharing your personal history and experiences though. I hope you can get somewhere with diagnoses and treatments if there are any. I agree because I saw a neurologist last year and I waited a few months to see him and when I did see him he just said that I had fibromyalgia and he tried to kick me out and I found it disrespectful that they just say a condition that mostly lines up with your symptoms but they don't really test it much or look for proof so I hope they can work on that and not make any more complications.

[annapugh]

Have you been tested for POTS?

[Starrynightz in reply to annapugh]

I was never tested for POTS specifically but did do a tilt table test about 5 years ago that was positive and I was diagnosed with inappropriate sinus tachycardia at that time but the symptoms and incidents I experienced then were intermittent and would pass after a few minutes or hours. Now it’s been consistent for several weeks quite possible months I’ve been experiencing the symptoms that have progressively gotten worse and now I can’t walk properly, I have abnormal tone and gait with poor motor functions. I also experienced tremors and loss of vision in my right eye with hyperflexia and anisicoria which was all summed up to be “FND, diagnosis of exclusion”