Understanding Raynauds

Hi All,

I have been a member of this group for a while and found everyone's posts very informative and helpful. Thank you so much. it's reassuring that Raynauds isn't just a case of "cold hands" which a lot of people seem to think.

My doctor suspected I had Raynauds last June when I started getting numb fingers, although it would only effect 1 or 2 fingers on 1 hand. My hands can often change to be burning hot, swollen and red, which can be much more uncomfortable than having cold hands. I also have trouble will my nose turning red hot (which can be totally embarrassing too!)

I did try and continue without medication for a while however in Jan this year I was prescribed Nifedipine three times a day.

I did see a Rheumatologist at our local hospital in March who confirmed Raynauds and I was advised that I could double the Nifedipine dose and take 2 three times a day. And I had more blood tests and a chest x ray and was told they would see me again in 6months.

I get a lot of pain in my hands & wrists and doing things like hoovering hurts, typing etc hurts. Is this a normal symptom of Raynauds?

Also is the Nifedipine supposed to stop my hands being purple as a lot of the time they're purple from the middle of the back of my hand to half way up the fingers. My thumb turned totally purple the other day!

My feet haven't been too bad but today is the first day I haven't worn socks for months so I'll see how that goes :) and my knees are always a lovely shade of purple and red. Is that caused by the Raynauds too?

I have also found that I am waking in the night because one or some have my joints have "locked" and the pain has been excruciating and have to gently try and get some movement back . This used to happen now and again but like everything else it is getting more more frequent. Does anyone else suffer with this? I spoke to the GP and he didn't offer any reason for it and prescribed Tramamol and I am also on Amitriptlyne (for Fibromalagia)

It would nice to know if all these things are connected rather than receiving blank looks & more tablets :(

9 Replies

  • Hi Panda,

    I've not been on the site long but I'm already learning lots about the differing ways Raynauds affects us all & the differing severities. I myself have secondary Raynauds alongside my EDSH & Aspergers. My feet are worse than my hands for the pain, swelling & numbness with some days feeling like I am walking on my heel as that's where the feeling/sensation stops (my entire feet are numb). It is very rare that I have bare feet & often have to wear 'bedsocks' for comfort.

    I have very dry skin on my feet, knees, elbows & hands (which I'm now being tested for Sjogrens to see whether related) & am starting to develop varicose veins within my right leg (most of my symptoms have started here).

    Because of my EDSH I have now been advised to wear wrist splints overnight to help prevent Carpal Tunnel Syndrome. However keeping my wrists in the one same position all night then affects my Raynauds meaning I often wake with numbness or pins & needles whilst I wait for my poor circulation to try & get things working again.

    As such I guess what I'm trying to say is that most of our symptoms will relate to our conditions in some manner but when there is more than one condition to manage it can be difficult as the recommended treatments can conflict one another. All good fun & games.

  • Hi, Yes, everything you say you have is Raynaud's connected. Because Raynaud's is a blood vessel problem, all kinds of things connected to blood vessels can flare up and then go away again. Sorry you're in so much discomfort! Cold weather doesn't help either does it? Do you have thermal gloves to wear? They really help. Exercise, although painful at times, really helps the circulation problem, so try to do some every day. Swinging your arms round and round helps your hands get a bit more blood. Fybro does seem to be connected, as many people who have Raynaud's seem to have Fybro as well. Stress and lack of sleep makes Fybro worse. Do you take sleeping tablets? Perhaps you should consider it as getting a good sleep can really help with both conditions. My elbows lock as well and it is vry sore! Keep your chin up and try to think positively as when you think negatively, a chemical from your brain affects your body in a bad way. Read book called "Who Messed with My Brain" By Dr. Caroline Leaf. Great book! :)

  • I too have raynauds and sjogrens and maybe something else! My hands to sometimes lock almost like cramp very disconcerting, so I know how you must be feeling. I think I have overlap connective tissue disease. I have got to the stage where nothing surprises me. As nettie says you do need your sleep not always easy. I occasionally resort to amitriptyline which does knock me out and helps with pain relief. I hope you get some relief.

  • I have Raynauds and Sjogren's too. I also get really painful spasms in my toes. It happened tonight while I was driving. I stopped the car and had a look at my toes, and the small one and the one next too it had gone off to the side, leaving a gap between the three others. When the spasm passed, all my toes went to thier normal position. wierd!! Oh, and I have carpal tunnel and hypermobile joints.

  • This sometimes happens to mine too Pipsmum. It's normally my big toe though....it's horrible!

  • I get these spasms in my feet too and it once struck while driving on the freeway. I thought it was a lack of potassium, but my doc said recent studies have showed it's actually a lack of magnesium. Ask your doc about it.

  • Thank you all for your comments and reassurance. It's quite unnerving when you're told yes you have Raynauds which causes bad circulation but not told about all the other effects too. So it's great to know that you're not alone with it all.

    My family are so supportive and understanding but I get cheesed off with myself saying this hurts and this is happening. I need to stop beating myself about it all and look after myself instead.:)

  • Hi. I have Raynauds and Lupus. I have a finger that locks up occasionally. My rheumatologist calls it a trigger finger. The longest it has ever locked up was 4 months. The shortest was one week. I have been taking Norvasc for a year and have noticed a huge change in my Raynauds. I no longer have problems with my knees locking and popping. I don't know if that is because of the Norvasc or if that part of my lupus flares is just over. I also don't get affected by the cold AS MUCH. It's summer and when I enter the freezer section of the grocery store, I notice the change in color, but I can stay and shop longer with less discomfort.

  • hi,

    i basically have everything you have ( and A LOT more!!) and i find school hard with it all. i have really bad pains in my hands and wrists, and arms, i think its normal. i also experience a lot of other symptoms including my feet and hands randomly cold, including one time where my whole left upper arm went icy cold for hours!! if you want to message me then im free during break and lunch at school and obviously in the evening, except tuedays!! i hope all of this helps and you dont experience too many other things.... im not on medication and have been waiting to see the rheumatologist for months now, all the best :-)

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