Raynauds Disease in toes

[lauriegirl]

I have just been informed that I may have either Raynauds Disease or Erythromyalgia. I have been having severe spasms in my toes over a 6 month period.  When I put them in bathwater, I suffer extreme pain. The only thing that
seems to sedate them is Motrin 200

Is what I may have curable?

[ireneo]

I also have Raynauds. Raynauds usually causes color changes such as white, blue then red. Most often it's triggered by stress or cold (even an air conditioned room will trigger a Raynauds attack). Erythromyalgia is a bit different. People often say their hands or feet are bright red and feel like they're burning.

Have you been to a rheumatologist yet? That would be the best to see exactly what you have and whether it's primary (only Raynauds) or secondary (to Lupus, scleroderma, etc.) Many folks with Raynauds find some relief by taking calcium channel blockers. I take Diltiazem for my heart but it also helps with my Raynauds.

If you google Raynauds there is an excellent site that offers information, coping strategies, new treatments available, etc. The site address is raynauds *******. I've been visiting there for quite awhile now and they're a very helpful group of people. Take care and see about going to a rheumie.

[Weesy68]

I have erythremelalgia/erythromyalgia.  Initially it started out as my hands swelling, red and burning and two doctors gave me the "we don't know" look.  Then I became low on iron and was as cold as I've ever been in my life so the burning hot went away and all that was left was pasty white.  When the third doctor put me on iron the, erythromyalgia returned slowly but I have had both Raynaud type symptoms as well as erythro.  My hands do go white then just from the top knuckle to the tip of my finger they are red when I put them under cold water.  When the erythro acts up, my entire hands and feet go fully red and get hot, like I have a fever.  I have also experienced this on my outer ears a couple of times, but not often.
At first when my iron was low warm baths felt great because I was so cold, but now as my iron improves I am noticing the burning again.  This also occurs when I wear socks to bed or off and on when the covers are on my feet.  I have ALWAYS worn socks to bed and when the heat comes, I have to take the socks off and throw the covers off my feet.  I have never liked walking on my tile floor until now.  It actually cools my feet when these episodes occur.  So you can have both Raynaud's and Erythro but it isn't common and if your symptoms are more in line with the hot burning sensations when you go from cold to simply warming up or getting into a hot bath/shower, then you probably have erythro.  Not a lot of great solutions for it, but at the very least I felt vindicated as I had described the symptoms to a T for the first two doctors who acted like I was nuts.  To have a vascular surgeon later diagnose this for me was great because it validated what I knew was going on.  In secondary disease it does mean that it won't resolve without treating what is causing it.  If you do have erythro, an aspirin a day is what my doc recommended with ibuprofen as pain relief, but it sounds as though this is progressive and a lot more research needs to be done to find causes as well as better treatments.

[Weesy68]

Thought I would update that I finally after 1 1/2 years have a diagnosis.  Sad part is I myself had to pay for the initial testing because not one doctor out of at least 8 ever thought to test me for it.  I have Lyme disease.  I have tested positive twice now on the ELISA test and once on the Western Blot.  Only one Western Blot was performed.  This explains so much.  Obviously I do believe my erythro comes from damage that the Lyme is causing because it has been left untreated.  I plan to seek treatment in the month and we will see what happens.  After my first test came back positive I looked on youtube.  I would recommend looking at the videos.  I was surprised how much I had in common with the Lymies, but I am sure this may help others find a diagnosis as well.  At least it may point people in the right direction.  It's one thing to read the medical literature.  It's a totally different experience to hear people with the same condition. I felt like they were all saying what I have been saying the last year and a half.