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Thread: Ranaud's getting worse?

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  1. #1

    Ranaud's getting worse?

    I've had what I believe to be Ranaud's Disease for about 20 yrs now (since I was about 25... before my SCI). Fingers on 1 hand (especially index finger) turn white in cold weather or when exposed to something like cold water. I've talked to a few people in the medical field who basically said that unless it is or becomes problematic, there's not much that can be done about it. And that's all it's ever been up until about a week ago. Out of nowhere, I started having serious pain in the tip of my index finger. It feels like someone is squeezing it in a pair of pliers. The actual pad of the finger is quite sensitive to even touch anything. This is the case for 90% of the day. It's kept me up a few nights as well. I've also been having some pretty bad aching in arm on that same side - more muscle than joint. That's not as frequent but equally as bad when it's there. Not sure if the 2 are related or not.

    I have quite a bit of nerve pain in my hands that seems to be ever-evolving, so for the 1st couple days, I just chalked it up to that. But the other day my gf made a comment about my fingers looking dead-like "lately". Then of course I paid more attention and feel like they are definitely way more white way more frequently than I remember in the past. Does anyone have any experience with this? Is this something to be alarmed about? If I go to an urgent care center is there a test (blood or otherwise) they can run to see if things (blood vessels, I presume) have progressed to a state requiring some sort of treatment?

    Although the pain is bad, I can get by lumping it into the typical nerve pain pile I'm used to dealing with. I'm just concerned that the change might be indicative of something more serious.

    *************************************************************
    *** c4/c5 incomplete *** Injured in Summer 2003 ***
    *************************************************************

  2. #2
    I would definitely be seen by whomever is managing your spinal cord dysfunction issues. I would try not to go t o an Urgent Care Center, since the SCI on top of the Raynaurd's is unusual.

    ckf
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Quote Originally Posted by SCI-Nurse View Post
    I would definitely be seen by whomever is managing your spinal cord dysfunction issues. I would try not to go t o an Urgent Care Center, since the SCI on top of the Raynaurd's is unusual.

    ckf
    Yikes. OK - I was kind of hoping I was being WAY over cautious about this. Sounds like it's time to see my SCI doc. Thanks!

  4. #4
    let us know!

    ckf
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    I have had Raynaud's for about 30 years now but only comes about in extreme cold. It is super painful when it strikes. Mine seemed to worsen when I developed bilateral carpal tunnel 18 years ago. I am T11 complete and the CT left me functioning as a quad, basically, for over a year. I saw two hand specialists and had nerve conduction studies done and they all reported that I wouldn't regain full function of my hands due to the nerve damage. I opted to not have CT release surgery and instead found a chiropractor who treated the CT with traction therapy and also did some minor neck adjustments. I learned a great deal from him about how the spine's health affects your hand function. I no longer have CT symptoms and the Raynaud's has almost completely never reared it's head again. It could be a total coincidence, however. I'm not advising you in any way here, just offering my experience in case it will help you and your doctors find a solution to what ails you. Best of luck to you!

    Editing to add that I don't have the permanent damage to my hand function that they presumed I would have.
    Last edited by oncetherwasagirl; 03-01-2019 at 03:56 AM. Reason: To add

  6. #6
    So I FINALLY was sent for MRIs and X-Rays due to this. Lo and behold, they found a syrinx (I want to say 9mmx7mm... medium-ish?) at the level of of my injury. My SCI doc referred me to the neurosurgeon at Craig Hospital. Upon calling his office, I was told they could not see me because of my insurance. I was surprised to hear that they did not have anyone else to refer me to - surely I cannot be the only person with Humana insurance in need of their services? They said they would try to find someone in the area and get back to me. I also have a call in with my SCI doc informing her of this, so I hope she can be of help in getting me to the next step.

    Is this they type of thing people travel out of state to see specialists (who participate in their insurance network) for? Sounds exhausting/expensive.

    *************************************************************
    *** c4/c5 incomplete *** Injured in Summer 2003 ***
    *************************************************************

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