To: mareeok, about RSD

Discussion in 'Fibromyalgia Main Forum' started by laura81655, Oct 4, 2005.

  1. laura81655

    laura81655 New Member

    H: I noticed that you have been battling with RSD. I wanted to ask you about my symptoms in my feet. They have hurt sice last Jan. I injured them walking briskly on concrete, for exercise.

    They turn a purple blue color, and bright red also, and some swelling. They can be extremely painful, especially with anything weight bearing, walking or standing.

    I have seen four different specialist but to no avail. I am seeing my Rheumatologist, to rule it out, but I thought that the Neurologist would be able to diagnose also.
    (sigh) thanks, if you catch this.....
    -Laura
  2. Mareeok

    Mareeok New Member

    till now. What you are experiencing sounds like RSD but I suggest you do research on the net since you could have overlapping symptoms with something else. I still consider myself new here but I have come to the conclusion since reading the posts here that I have a mild case of FM with RSD being the main problem.

    Look up RSD on the net and perhaps join an RSD message board. Aware-RSD is a very good one and the one I belong to but there are a lot available.

    It is difficult to diagnose RSD/CRPS (as you know). They test you for everythying else first and then by their examination of you and from talking to you. I looked at your Profile and see you are in CA. I suggest continue looking for a doctor who knows about RSD/CRPS. I have better results with my regular doctor than from a Rheumy who was supposed to be a patient advocate. Don't give up searching. If you like your regular doctor he may be willing to research himself in order to be able to help you.

    Educate yourself so you will be informed when you go to a doctor. Once I knew what I had may be RSD I did heavy research on the net. I knew that is what I had years before it was finally diagnosed. I was fortunate to find a specialist to diagnose it. I was tested for practically everything and everything pointed to RSD. Even after the doctor was convinced that it was RSD he wanted to continue testing me to rule out anything he could think of. He started taking out old medical books with all kinds of unusual diseases. I told him to stop since we were sure it was RSD.

    Mine has always been the worst in my feet and legs. What activated it was a hike in the woods. Three days later I was walking in a mall and all of a sudden all my toes severely cramped up. I quickly went into an aisle in the closest store and pretended looking at merchandice till I was able to walk. By the time I got to my car my sneakers felt tight and when I got home my feet were turning purple and swelling and the pain was excruciating alternating between red hot searing pain to ice cold searing pain and then blessed numbness and pins and needles. When it switched to the pins and needles my feet would get very heavy (more severe than when your foot falls asleep)I went thru this a week till I was able to get to a doctor. Doctors had no clue. Years later I was finally Dx'd.

    Do you still have the pain when you get up in the morning? What about the swelling, is it still there in the morning?
    My pain was there all the time. If I woke up without pain it would return within the first hour up. But sometimes the pain comes lagter on in the day.

    I'm trying to recall my early symptoms...do your feet feel very heavy? When you take your shoes off after going somewhere are there black and blue blotches around your ankles and feet as if you bumped them and caused black and blue blotches? The blotches can disappear later on in the day or the next morning after not walking on them? Are there certain points on your feet that you will not touch or allow anyone else to touch because those points will put you through the roof from pain if those points are touched?

    Is it only your feet or is the pain traveling up your legs also? Mine spread up the legs and my left foot was always worse than my right (even now). RSD sufferers don't always have the same symptons as the next person but the pain is the same. My symptoms change through the years. It even went into remission for a few years. It's been back for awhile now and spread to my hands also and then to full body. In the last four years part of my legs are redder than the rest of my leg.

    If you join Aware-RSD I can give you my email address if you want to talk off the board also. In the meantime, I will try to answer any questions you have here.

    Heart hugs,
    Maree
  3. laura81655

    laura81655 New Member

    For such a detailed report about your RSD. Many of my symptoms sound like yours, but, some not. Although I'm sure people differ with symptoms with RSD, just like fibro.

    I will look for you on Aware-RSD. Hopefully I will figure it out, and I will try and contact you by e-mail.

    Thankyou SO SO much for contacting me. I am going to try and locate someone in San Diego who could identify what is going on.

    -Laura
  4. Mareeok

    Mareeok New Member

    I hope you find out you don't have RSD. Talk to you soon.

    Maree