Purple toe!

[marilynmcl]

My toe has been purple for a few months now...secondary Raynauds, just the one next to my big toe. It is swollen and I can't really feel it belongs to me from the knuckle upwardly. It has slowly become worse the last week or so. Do I wait until I have my rheumatologist appointment in 3 weeks from now ...or do I go to my doctors, whose systems have changed from appointments to online question forms which I have used the other day for my choking problem ....nearly choked to death on Sunday and hubby had to batter my back until I threw up and cleared the obstruction..a small piece of lamb which had lodged in my breast bone area and when I tried to clear it with a drink...the liquid all came back up immediately and went up my nose then down it, and I found I couldn't talk or breathe! The panic I felt was horrible. This is the third choking I have had in the last two months..swallowing food is not easy, it sticks and I have to have a drink with almost every mouthful. Anyway, I got in touch online then on phone with my doctor's and she is sending me for a swallowing assessment!!! so, if I choke to death in between an appointment coming and hubby is not at home- If hubby had not been there on Sunday I reckon I would not be here now. So, this is my problem....do I get back in touch with my online form doctors and maybe get sent for a 'toe assessment' or just wait to see my rheumatologist? Advice please!

[Hidden]

I’d avoid eating anything too solid (!) for a while. There’s a system with 999 if you call them and you can’t speak you hit 555 to let them know the call isn’t a mistake (worth knowing if you’re choking and can’t speak).

I personally would go to hospital with the toe - minor injuries clinic - with it worsening and losing feeling recently you could lose the toe.

[marilynmcl in reply to Hidden]

I think you are not too far wrong. I am watching what I can eat safely now...lots of chewing on anything that won't go down easily. Many thanks for the advice on the phone calls for emergency. Will definitely remember this. I am scared of losing my toe ... I was taken into hospital with almost black fingers 3 years ago and put onto a drip to open the blood vessels to them...was in 3 days. This Sys. sclerosis is awful...secondary Raynauds grrrrr! Feet are always cold, hands too with nose and ears joining in! So, will be contacting my doctor first to see if they will help, if not, then will see my rheumatologist, Dr. Anna, and hope that she can offer advice and solution. Thank you so much for replying xxxx

[Vtoria]

My toe went purple for a week I went to the emergency room they offered no help at all, they insisted I had injured it whence I did not. Most doctors have no idea, this is such a weird disease, things come and go or move to another area which is th case of my calciunosis. I have systematic scerloderma for about 30 years . I to went through the choking episodes, they are very scary. I have esophageal varacies that bleed and have to go under to have them banded. (They put tiny rubberband on them so they dont bleed out) mostly all that can be done is nothing, they scope me every 6 months, to make sure they are not bleeding. Because I've developed pulmonary hypertension. I also have to get an ultrasound of my liver every 6 months as I have portal hypertension. They are looking for cancer. I to am in so much pain and becoming very immobile. I'm headed for a wheel chair, I have braces now on both legs as my bones are disintegrating. From osteoporosis iam only 58 yrs old. This is a horrible thing to have, my body is failing me. All we can do is hang in there and take one day at a time. I'm getting so depressed I cry all the time, love to all of you out there.

[marilynmcl in reply to Vtoria]

Oh Vtoria...am full of empathy for you! I too have mobility problems..osteoarthritis in my knees,ankle shoulder and neck, I have a wheelchair,mobility scooter and sticks for the house to get around. Know how it is to be in pain...and nothing seems to work to help. I send my best wishes to you and many thanks for taking time to reply. xxxxx

[SelfLuv in reply to Vtoria]

We are here with you! You aren't going through this alone even if it feels like that sometimes! I cry too, I don't want this anymore! I agree with calling the rheumy. With swelling its a good idea to make sure you haven't developed a blood clot in a vein in your foot.

[KatieAnna]

I'm really sorry to hear about your choking and toe. I'd go to A&E for the toe and also ask for an urgent Speech and Language therapy assessment of your swallow. You have dysphagia (swallow problems) and will probably be advised to stick to a softer diet with nothing that needs much chewing. Drinking with each mouthful will help too. Sometimes you can let little bits of food go down the wrong way without noticing if you choke a lot, which can over time lead to chest infections. Make a fuss!!!! Get help as soon as possible. You are the best person to fight for your own help. Take care.

[svanseghe57]

Dear Marilynmcl.A purple toe is a TYPICAL sign of our very peculiar ailment.A few followers of this forum have had this problem.As far as I know it is not serious and I must admit it is the first time I ' ve heard of swollenness.In the course of the current year my toe from purple has turned to greyish.However no pain.By the way, the young rheumatologists to whom I go once a year for my routine check- up have no idea how to tackle the problem.Keep well.

[Kingfisherblue2009]

Yes I would see the doctor as soon as possible. By then your consultant will follow up with any extra treatment. Dont wait.

[linda-l]

Does your rheumatologist provide you with a phone number for rheumatology advice? If it was me, I would call my rheumatologist's secretary and ask her to pass on your concerns to your rheumatologist.

It's doubtful your GP or A&E would have the knowledge or expertise to deal with complicated autoimmune conditions.

[Munchkinfeet]

Hi poor you, my big toe was purple for a month from January, I didn't know at the time about Raynaud's and just put it down to being cold in my classroom at work, then my fingers went the same in August. My toes were so sore and numb had to stop my running, every time I put my foot down on the ground I thought my toes would snap and fall off. I still don't know what my raynaud's is secondary to, but I would definitely speak to gp if it is sore and affecting your quality of life xxx

[marilynmcl in reply to Munchkinfeet]

The systemic sclerosis has a side effect of secondary Raynauds... this illness just keeps giving! I never had any problems with cold hands, feet,nose and ears before. The toe that is swollen and discoloured has hardly any feeling so this is why I am so scared I am going to lose it. I think I will give my rheumatologist a phone call and see what she says. I thank all of you for your replies and advice which is much appreciated! Best wishes to you all xxxx