I might have RSD. How to separate myself from pain?

Discussion in 'Fibromyalgia Main Forum' started by daylilyfan, Nov 8, 2005.

  1. daylilyfan

    daylilyfan New Member

    If you remember, I have posted about getting injured during an evaluation for physical therapy. The evaluator had me moving my arms up and behind me, pushing against her hands.. and it hurt a lot. I ended up with rotator cuff injury, tendonitis, bursitis. It's been very very painful, and has not healed or improved despite various treatments.

    Then about 2 months ago, we noticed that my hand on that side was red, and very cold. I've been running fevers on and off for no reason. My hand has been somewhat swollen, and the skin a bit shiny. When I finally saw an ortho doc, he said "I wonder if you have the beginning of RSD." Well, he did not know that I had a half sister that had RSD. We were not close - she was raised by her mother, and did not have much to do with us. She was 20 years my senior. She could not take having RSD, and passed away about 4 years ago. At that time, they actually thought I might have it in my foot, and while attending her funeral, I was shocked to find out she had it. I did a ton of research into it then. But, it turned out I did not have it then.

    But, now -- I very well could have. I take 275mg of Topamax a day for fibro, and that is one of the main drugs for RSD .... and it could be masking some of the symptoms.

    So, here I am, still struggling with the shoulder injury, but now with stabbing pain up my neck, down my chest, across my back and shoulder blades. My upper arm feels like it's been kicked by a horse, and I had horses - I know what that means. My hand is red most of the time, but it's often icy cold. If I take a shower, my hand turns bright red. If I move just a little wrong, I am over come with waves of pain that wash over me and make me nauseated, and lightheaded, it's so intense.

    I've taken several NSAIDs - no effect. I've taken 2 - 750 vicuprophen - no effect. I've taken 8 ultram in a day. No effect. I've had a little help with lidoderm patches, but not much. I've turned down stronger opiates, cause they tell me if its' RSD they won't help.

    I have had an MRI of my shoulder, but tomorrow I get one of my neck to rule out pinched nerves there. I can't see that's it, because I don't have numbness.... but it can't hurt. Then, Friday I go for stellate ganglion block ( I hope I got that right) where they go in to the neck and put meds in to the nerve. Then right over to an occupational therapist. They tell me if this makes my hand normal color and temp, this means it is RSD.

    Sorry for the rambling, but I actually do have a question.

    I saw the occupational therapist last Friday. He gave me several exercises to get my shoulder and arm moving again. I'm supposed to get into certain positions then lean down or out or in and stretch - but I am so bad, just getting into the position is so painful it makes me cry. I know I have to do this, or I will lose the use of my arm. I've been doing them as best I can , but I get so tense before hand, I know I am not doing myself any good... anticipating the pain. Yesterday, I remembered something a massage therapist I used to go to told me about breathing "through the pain" and imagining you are in a beautiful place. I tried to do that last time I did the exercises, and it seemed to help. I've never been able to meditate, but wonder if that's what I need to learn.

    Can anyone tell me how to find out ways to "deal" with this pain - to sort of set myself apart from it? I'm thinking if I can find a way to put myself in another place while I do these exercises I might be able to tolerate them. Or any other hints??? I know some of you do have RSD on here, and also know some of you do yoga, tai chi etc, and thought you might have some suggestions.

    Thanks so much.
    Jules
  2. victoria

    victoria New Member

    One possibility is to use hypnosis... you can use a hypnosis tape or have someone teach you self-hypnosis, works quite well... and or use music that helps transport you to a different time/place/emotion?

    My hubby has RSD, was also a psychologist who worked with people with RSD and other types of chronic pain, used hypnosis to help them...and self... but also at the time read that best thing was to 'work thru the pain'. He said it was hard to do, but knowing that it would help made the difference...

    It sounds like they are telling you to do the same? Every case is different, altho he too had complicating factors such as bulging cervical disks and cervical stenosis... latter actually got somewhat better which is not supposed to happen.

    all the best,
    Victoria
  3. daylilyfan

    daylilyfan New Member

    for some more suggestions.

    I did check with a man I work with who does hypnosis... but he won't see anyone without a $500 upfront minimum. I can't do that right now with all these other costs adding up.

    I made an appointment with the massage therapist, and hope she might be able to tell me of someone who can help me with being able to relax during the pain. I think I am getting so tense anticipating the pain of the exercises that it's making them ten times worse.

    Perhaps the occupational therapist will have suggestions too.

    I thought perhaps someone on here had something that would help????

    I thought Fibro was pain. What ever this is - if it is RSD or not - has taught me that Fibro is not so bad after all.

    Jules
  4. laura81655

    laura81655 New Member

    I have something similar to you in both my feet and ankles.
    I can barely walk because of the pain. They get bright red, and also turn bluish. I will take off my Nike's and socks and my feet will feel ice cold.

    None of the specialist knows what it is, so my PCP is referring me to the Mayo Clinic.

    Sorry, for getting off track here. What I would HIGHLY suggest is to get Physical Therapy in a warm, around 90 degrees, Pool. It is so much easier to move in the water, versus land exercises. Also, maybe stretch a tiny bit after you get out of a hot shower. You have to go slow with this.

    Jules, I really hope you can ask for aquatic therapy. I am so sorry for all of your pain, but you will get through this. Keep us posted.

    gentle, gentle hugs,

    Laura
  5. victoria

    victoria New Member

    There are hypnosis tapes available, even books on hypnosis that have scripts in them that you can use as written or tailor to yourself and record on a tape to listen to... you might try looking on Amazon or at a nearby bookstore? I've done it that way, it works just as well if you keep doing it.

    But $500 upfront?!!! I've never heard of such a thing, that is a shame... I wouldn't pay it either. Don't know how close a larger city might be to you, but might be worth a little longer trip if you can find some more reasonable and ethical.

    all the best,
    Victoria
  6. laura81655

    laura81655 New Member

    Did they do a bone scan to help with the diagnosis of RSD?
    -Laura
  7. daylilyfan

    daylilyfan New Member

    no bone scan yet. They think they have caught it so soon that there would not be bone changes yet. If it did not set in immediately when I was injured, but set in when I first noticed my hand being red - I am at about 2 months. If it was immediate, I would be at about 3 months. I have everyone puzzled here, that is for sure. But with the Topamax in the mix, that could be what's confusing things. No one wants me to taper off it to use for a diagnostic to see if it brings on RSD pain and more symptoms though. Thank goodness. All feel it may be keeping it from being full blown onset.

    I'm really hoping my massage therapist will have specific recommendations for me about separating mind and pain.

    I did do some searches here on this forum, and have now ordered a fibro/self hypnosis CD by a woman who has fibro. Maybe that will help some!

    Jules
  8. Mareeok

    Mareeok New Member

    and the most important advice is to be very very careful what physical treatments you decide to do to help with the pain. RSD is very specific to each sufferer and what I may do that helps me may be very detrimental to you. Start very slowly with any physical movement and as soon as you feel it start to hurt, stop the exercise. 'Pushing past' RSD pain does not work and can often make it worse and make it spread. If you know that a certain movement usually hurts don't start with that movement in a treatment. For example, I know that I cannot kneel and have the top of my feet resting on the floor or flexing my foot that way so I would be very slow in incorperating that movement in any treatment I would try. Also know thatChiropractic treatments should not be done. It can often make it worse. I've had chirpracters who are familiar with RSD even tell me not to allow treatments. If you do physical therapy for some other problem please be careful. You may need to modify what you do. Apply this also with occupational therapy and also water therapy. Water therapy is the least traumatic and I encourage you start with that and again be very careful.

    Rsd can seem to improve when you begin some physical treatments and then turn worse a little later so it is not advisable to keep 'pushing' because it feels alright while you're doing it. Start very gingerly and do not increase the movements right away.

    RSD pain is very individualized so you shouldn't do what works for the next person. It's a very careful trial and error for each person. Give it a few weeks with each attempted treatment before you increase the intensity or add another movement so you'll be able to judge if it is works for you. And when you try a different physical movement stop the one you were doing.

    Please don't get discouraged by what I said because you may be helped by what you choose to do. Just be careful and go slowly. I hope this helps you, sweetie.

    Maree
  9. daylilyfan

    daylilyfan New Member

    Those sound like the words I needed to hear. From one who has been there! The ortho doc, the pain doc both have me scared silly about losing the use of my shoulder/arm if I don't start using it right away, even if it hurts. I've been protecting it now for 3 months from moving it the wrong way - and I only have about half the range of motion and strength I should have. I think I've been unconciously doing what you said - the exercises that are not so bad - well I've been doing them .... but the two that really hurt a lot... I put my arm out in the position, but I don't try to bend or stretch at all and I don't keep it there but a second or two.

    Someone in my "non fibro friends" has just contacted me about my terrible time today with the MRI and the vibrations causing me such terrible pain. It was the worst I have had in my life. It is still sending shooting pains from my shoulder into my body... 4 hours later. That, coupled with my coldness, cued this friend into my possibly having a rarer form of RSD. Her husband has RSD- I have met this lady at conventions, but her husband was never with her - now I know why. Anyway, the info told about triple C syndrome type RSD.. that the block I am to have on Friday will do nothing for. She gave me some websites for info, and be darned if that really does sound like me. Quite different treatments! I'm going to contact the pain doc in the morning to see if I can fax him this info and see if he can look into it before doing the block - seems a block of the "A Delta Nerve" instead of into the stellate ganglion is what is needed.

    Isn't it amazing that to get the best care, we have to search out our own information, double check every medication, every treatment. These are good docs I am going to, but this is not your every day high blood pressure problem. It's a rare thing, and lots of different presentations.

    Thanks so much for the info and cautions.

    Any more info or suggestions are surely welcome. This will not be easy, but I with boards like this one, it does make it a little easier to watch out for one's best interests and to find the best ways to deal with what life throws our way.

    Jules
  10. Mareeok

    Mareeok New Member

    Think positive. Even if you do have RSD it can go into remission for a time or partial remission. It went into full remission for about four years for me. Another time it went into partial remission for a few years.

    Do a lot of research and go by your gut instinct and not follow blindly what any doctor tells you. Always research and use your own body as the gauge.

    Heart hugs,
    Maree