I could use a little advice, please.

I am having problems with my hands now, and I'm not sure if it's spread. It's a much different kind of pain than in my legs. They are certainly more sensitive than they used to be, which fits the bill... and I have a few discolored spots as well. They are always cold, too.

But my biggest problem is in pushing myself up off the couch, bed, whatever. I am accustomed to using my hands and arms to move myself around, it takes some of the burden off my legs. About 1 out of every 3 times I do that now, though, it causes quite a bit of pain. It feels as if I have a broken bone in my hand, and it's grinding under the pressure I am putting on it. THAT is not what I am used to in my legs and feet.

I don't have a PM specialist, I am treated by my aids dr. They try their best, I'm sure... they've even gone to a few of the websites that I told them about, the ones I got from this site (thanks e1). I haven't had any tests, xrays, blocks or therapy in about 9-10 years.

The main problem is, my dr.s say, that the PM here is awful, and prescribes very few pain meds. And once I go to him, Medicaid will NOT allow my reg Dr. to keep giving me the meds I am on now. They will go strictly by the recommendations of this sub-standard PM. That will just not do, obviously.

I am truly afraid of going anywhere else to seek answers. I went many years without treatment of any kind, self-medicating with illegal street drugs and Rx's we could get easily in Mexico. I cannot go back to doing that, or maybe I just won't. But that's the reason for my dilemma.

What should I ask my reg. dr. to do to find out what is going on with my hands?

My RSD has always had a arthritis feel to it....deep aching since I can remember. Started in the hands but when it moved to the feet it was burning and then the ache started.
My PM doctor wanted to make sure we weren't chalking everything up to RSD so sent me to neurologist....he took 6 vials of blood, electrocuted my feet and did a bone scan. None of those tests showed up a thing....I did have to laugh when after all that the neurologists only suggestion was "to wear good shoes "
I had an appointment the next week with Ortho who also treats RSD patients, he did scan and cold stress test on both feet and hands and that's when I was told I was no longer a candidate for SCS and that my RSD was "Cold"
So really they just rule out everything else that it could be.....my gut told me it was spread but even though I wasn't really looking forward to having SCS, I hate having my choices taken away.
Hope this helps a bit....
Jeanne

Hi,

Are you on Thalidomide or have taken it? This is just a thought. Love, Roz
http://www.nature.com/mt/journal/v15.../6300019a.html

I have been reading the article Patterns of Spread in RSD, and they explain something called disasociated spread that seems much like what you are describing.. The article is very good and I think it can help your quest for answers.. I am right there too..

http://www.msnusers.com/TheCanadianR...ttachments/207

Good luck to ya Rougue and let me know what you think of the article, I truley think it is one to show your Docs and use in apeals .

Hi Sandra,

Does the article explain why we have the spread? Hugs, Roz xxx

This is the final paragraph before the listed references (this artical was published in jan 2000)

CS, IS and MS may be distinct phenomena and it is
possible to hypothesize different underlying causes for
each. However, it is also possible that all three kinds of
spread may be expressions of a generalized disorder of
CNS regulation of neurogenic infammation. Neurogenic
infammation is almost certainly a multi-dimensional
phenomenon involving, for example, the generation of antidromic
impulses in primary afferent sensory neurons (resulting
in the peripheral release of neuropeptides like substance
P and calcitonin gene-related peptide), an interaction
between primary afferent terminals and the terminals of
postganglionic sympathetic efferents, and CNS regulation
of the immune system's contribution to infammation
(Eliav et al., 1999). Aberrant CNS regulation of neurogenic
inflammation may account for the initial appearance of
CRPS-I/RSD, for all three kinds of spread, for the movement
disorder (Schwartzman and Kerrigan, 1990; Bhatia et
al., 1993; Veldman et al., 1993; Baron et al., 1996), and for
the dysregulation of vasomotor and sudomotor function
(Kozin et al., 1976a,b; JaČnig, 1985; Schwartzman and Kerrigan,
1990; Bej and Schwartzman, 1991; Herrick et al., 1994;
Baron and Maier, 1996; Kurvers et al., 1996; Birklein et al.,
1998; Wasner et al., 1999).:

3.8. Dissociated spread (DS)

In nine cases of IS and MS (patients 3, 5, 8, 10, 17, 18, 21,
22 and 26) we noted a dissociation of spreading symptoms,
J. Maleki et al. / Pain 88 (2000) 259±266 263
where parts of the CRPS-I/RSD symptom complex other
than pain (abnormal vasomotor or sudomotor function,
and/or diffculty with movement) were the first to be noted
in the new area. This phenomenon has been described
previously (Schwartzman, 1995). The variable presentation
of CRPS-I symptoms is well known (Stanton-Hicks et al.,
1995; Baron et al., 1996; Schwartzman, 1996), and it has
been suggested that some patients may present with all of
the symptoms except pain (Blumberg, 1988; Baron et al.,
1996). The signifcance of DS is unclear. In particular, it is
diffcult to say whether or not the appearance of the other
symptoms first implies that they cause the pain.
It does, of
course, suggest the opposite ± that pain need not be the only
cause of the associated symptoms.

Maybe it would be a good idea to at least get xrays of your hands - just to verify that nothing is broke or arthritis has or hasn't set in.

Sandel...This link http://www.msnusers.com/TheCanadianR...ttachments/207
is a "for members only" thing. But thank you for trying anyway.

Buckwheat... no, I am not taking thalidomide. The article is very interesting, though, so it's something I will certainly research and consider. Thanks!

Nikon... it doesn't have an arthritis feel to it, at least not the way I remember my Grandparents feeling. Sorry to hear that they have taken away your choices of SCS or not, that really sucks. You're so right that the more options they remove from the list of "might helps", the more depressing it is. They're such hope killers, grrr.

Jo, I think you're right about the xray. I haven't had one in at least 11 years. Maybe I could get them to take one of my worst foot, too. That's where I worry about the bone density, etc.... it's the site of the original injury and surgery, so it's where the crps would be having the worst impact.

Thanks everyone, I really appreciate you all taking the time for your replies and help. I owe you each one spoon...you can all have them on Monday, and I'll just stay in bed, lol.