Can anyone help?

I have had Raynauds (primary) for 24 years, I was diagnosed at 12. For the last 2 weeks, I have had pains, numbness, tingling in my feet mostly, but also hands and thighs, that are separate to my Raynauds or any attacks. These aren't chronic but come and go. I feel like I am walking on numb feet constantly though. I had one night of constant pain the soles of my feet; my feet looked inflamed, the small veins in the side of my feet had become very prominent, like they were going to burst through the skin.

During this time my Raynauds has gone a bit haywire, with more frequent attacks and different symptoms.

I have been told it is to do with my Raynauds, and referred to a Rheumatologist,

Has anyone experienced this type of thing? Is it like a complication of Raynauds, or a feature of some people's Raynauds, to get pain and numbness when you are not having an attack?

7 Replies

  • Hi, I have Raynaud's. Two years ago feet literally exploded - swelled so much they burst the skin off and all toenails. They go through phases of numbness to ultra hypersensitivity - so even a sheet i.e. in bed - a single sheet is painful.

    My Rheumy hasn't actually said it was related to the Raynaud's. My Rheumy is the senior Consultant and also the Director of Training in Rheumatologists. She's referred me for nerve ending tests - Neurophysiology department, Ultrasounds - two types. Could not find a reason for this.

    Just to say they've not swollen like that since. Seeing Rheumy again in 5 weeks time.

  • Hi, sorry to hear about your pain.

    I suffered from this in the height of summer 5 years ago. I woke up and my feet were ballooned and looked like they had fire on them. I couldn't walk and they were extremely sensitive. I had to go to the a&e department because it still hadn't passed in 10 hours. The nurses and doctors there had no clue, just gave me pain and inflammation meds and sent me away with crutches.

    I went to see my GP the following day and she diagnosed me with chillblains. Said it's unusual in someone quite so young, I was 17 at the time. And I have to say that te diagnosis fitted any further symptoms I had with my Raynauds.

    My best advice for this is to try and warm yourself up very slowly, don't put your hands or feet near any direct heat. Just wrap yourself up and have a hot drink. I know it isn't great advice but I've found that works for my raynauds and hence my chilblains.

  • I had chilblains as a kid, I'm talking under 10 years old, and a couple of years ago went to the chiropodist complaining of what I thought was an ingrowing toenail and it was chilblains again.

    I swell up in various places, under and above eyes, fingers, legs and feet, arms. No one has said a word about it. This year it's started up again and also bad case of stress incontinence.

    Nurse at Gp's told me you've had treatment before so it's up to you to do the pelvic floor exercises. I got an educator gadget too, but if I did all the things they tell me I should, I would never do anything else.

    Had enough, want a life.

  • Hi inkyblue77. Raynaud's Phemomenon manefests in many ways and is very troublesome. The reason it's so difficult to deal with is because much of the symptoms favour something else but I beleive what you are experiencing is all related.

    Before I was diagnosed I had the most excruciating muscle and joint pains especially my knees and thighs. I still do sometimes. I have had skin rashes and scarring for years which my gp couldn't figure out and gave me various creams and ointments and antihistamine tablets which I still need. I still have itchy soles of feet with spots like chillblains. My hair would break for no good reason inspite of the care given to keep same in tip top condition. Sill happening.

    I became very ill and had some blood test done in 2004 which revealed serious underactive thyroid. I was referred to the Rheumatologist as Systemic Lupus was suspected. It was one thing after another over the years, a different symptom on a daily basis. I was finally diagnosed with Raynaud's Phenomenon on top of everything else. It is indeed a "phenomenon" and very difficult to manage. I was releived to finally get a diagnosis. I was begining to think I was going crazy and that I would be branded a hypocondriac.

    I am sure your Rheumatologist will get to the bottom of your illness but it can take a while and a few tests. Keep as warm as possible and try not to worry too much. Stress makes this condition worse. I am hopeful things will settle down a bit when you begin to receive the correct treatment. You have suffered much for a long time so good luck and all good wishes to you and yours.


  • Thankyou all for your kind replies and advice, really appreciated. There is definitely something vascular going in my feet i reckon. My gp did um and ah about whether to send me to a neuro as I have neurological symptoms, but opted for rheumy in the end, I definitely need to see a Rheumy for the Raynauds alone.

    I have wondered if I have some nerve damage from the Raynauds, does anyone know if this can happen?

  • i get all those symptoms, but have the pain and numbness most the time,without the attack ..i put warm things on but then i burn up ,the silver gloves also set off an attack ?? the sister said i was border-line under active thyroid and to take my temp every morning for a month...that done took it to my doc, he laughed and threw it in the bin,said not the right type of check but offered nothing else,,not with him now......i do have a walking stick now as i get sudden stabbing pain in my ankles ,heels, big toe joint locks...stabbing in my knee,the stick really helps altho didnt want one at first ... better stop now phew falling appart. ..

  • Am worried, as I keep getting neurological symptoms, and can't see how they relate to the Raynauds. Sometimes it's what seem like random numbness/pain in arms, thighs. Thankyou all for replying xx

You may also like...