I am not sure your question exactly but for me not just the rsd area is sensitive the near areas are as well. Basically my legs are off limits for anyone to touch. I have peripheral neuropathy as well.
A few other thoughts. In the start getting an rsd dx was also hard for me because I did not have all the symptoms and also did not have an injury or accident for this to happen. At one time I was also suggested it may been a trapped nerve but it turned out also not to be. You stated you had dx tests. Did you have an mir or emg/nc?
I do agree one needs to have all the appropriate tests to rule out or possible dx other conditions. For me I am so dx tested out and have not found the why behind my peripheral neuropathy or rsd that developed at age 28. So now it has been about treating the pain which is obviously harder since there is unknown.
Are they working with any meds with you right now such as neurontin etc?
I think part of what makes rsd so hard to dx and treat is we all are impacted in a different way.
I hope you get some relief and answers.

Hey Daniela,

I seem to be following the same path as you at the moment as I have been just over 5 months chasing a clear diagnosis without anything yet after 100's of tests. My pain however developed after a 2 day period of overuse of my operated right knee, which probably lead to the initial injury (hamstring tendon) back on 21st November last year.

Since the injury, I did not give it the sufficient rest it needed perhaps and the pain kept getting better with rest and getting worse with day to day activities (driving, work, fishing etc). I kept on this pattern for 2 months until the pain developed into something much more sever (possibly when the RSD had started to kick in). Two weeks later i went in for an knee arthroscopy which 'killed me' and tripled my pain.

Since then I have done the following tests:

MRI full body (found muscle inflammations/lesions on my hamstring tendon and calf muscle right knee. Also found a smaller inflammation on my left knee)

EMG, EGG, Ultrasound, Circulation Test, 5 blood tests - All fine. Not to mention being examined by over 25 specialists (doctors, physios, chriropracters, surgeons etc) so I have excluded alot till now.

Now in Germany I will do every other test possible to rule out EVERYTHING.

The strange thing is that I now have pain in my left arm and opposite knee (nothing like the pain in my right knee) and only come when I straighten them or start to use them as opposed to constant pain....

Quick update

Arrived in hospital today. After being observed by a top neuro specialist, he is suspecting that its some kind of nervous system disease following a strain to my knee.

Will start further tests tomorrow to get some more info. He also suggested doing a lumbar puncture...any thoughts if this is risky?

Thanks nigel

After completing all the tests, the doctors have confirmed that my nerves are all 100% and there is no chance of any nerve damage/irritation. Furthermore, they have excluded any other structural/orthopedic problem. Therefore structure and nerve wise I am fine.

They have come to a conclusion that i have a 'pain syndrome' which has hyped up my sympathetic nervous system. However they do not use the term CRPS hear.

He will be putting me on a medication program and advised me to slowly start pool PT.

At the moment my condition has worsened and am close to 6 months now. Would anyone recommend any other 'more advance' or 'more effective' treatment methods such as nerve block or ketamine etc?

Thanks,

Nigel

Hi Nigel, Im sorry to hear about your pain. I have had CRPS for almost four years now and I can understand how the pain can really tear you apart. Everyones symptoms are different and everyone reacts differently. Some people swell up constantly while others goes through periods of hibernation. I just wanted to comment on your question about the symptoms. I had been getting these jolting spasms from the begining but never realized they were associated with my CRPS because they came so infrequent and I also didnt know til a year and a half ago I even had CRPS. It wasnt til recently(past 6 months) that I have associated them with my CRPS. They come around 6 times a day. Like a jolt of lightening going through my body. They hurt pretty bad. Nothing compared to my foot but bad enough to make me cry. So, even though they started at the begining they did not really affect me til years down the line. Another symptom that is very knew to me is the pain I feel in my leg. Right before I am going to get a swelling attack I got this horrible pain in my lower leg. Like someone kicked my in the shin. I never had that prior to recently. So people dont always get all the symptoms at once. Im not saying you have CRPS, only a doctor can diagnose you with that but its a possibility. I pray you do not though. I am 26 years old, 23 when I got it, and I wouldnt wish this on my worst enemy. It really changes your life forever. I have it in my right foot. I lost my job when it happened because I worked in an office and I was on my feet all day and I couldnt physically do it anymore. I can only usually last 30 min at the most on my feet and that is if I am standing in one position with most of my weight beared on the "good" foot. Cant sit for to long either because that causes swelling attacks. Due to my swelling attacks, and the restriction of blood flow to the foot when they happen, I have lost bone mass in my right foot. Eventually I will no longer be able to bare any weight on that foot because it will be so brittle. I will be wheelchair bound. This is a terrible condition and I hope you have the pinched nerve others have posted about. My advice is to keep seeing doctors. I have seen 25-30 different doctors before finding my current doctor who is amazing! I have been treated for many different things over the past 4 years and as soon as I realize the treatment didnt work I moved on to another doctor. Actually, some doctors were so baffled they even told me not to come back and see them because they cannot help me! It was frustrating at times but I didnt give up. I kept going until I found my dr. He is a life saver. Im not cured but atleast he was able to treat me so I felt a little better. One last thing, if you do end up finding out you have CRPS do not let any doctor push you back into physical therapy. I think the physical therapy is what caused the spasms to occur more frequently. I let them push me to far and now stuck with these horrible spasms coming way more often. I know some people who do physical therapy feel better from it and im glad they found something that helps them but for some it may not. I wish I would of spoken up when I was doing it because maybe I wouldnt have these spasms coming so much now. Keep us posted on your condition! I hope you get better really soon!

Vanessa

Did you bring up the issue of RSD-CRPS to the docs at all?

Hey Jim,

Yes, and basically they concluded that it is CRPS without actually saying it if you know what i mean. They prefer to use the term 'pain syndrome' instead.

I am really confused at the moment as my dad is planning to return home to Malta and for me to follow the medication program given by the doctors. At the moment my condition keeps worsening and I feel as though just taking medication at home will not revers this????

My idea is to go to a specialist in CRPS in Germany and be guided further however my father feels that this is not necessary....really mixed up as to what the correct thing is to do at this point in time

nigel, I'm not sure if you've mentioned this earlier in your posts but has any doctor performed nerve blocks at all, and if so what kind-procedure?

I have mentioned it to them but the specialist replied that you cannot do a symoethic block as it would block the nerve from functioning, therefore not sweat etc after...really mixed up at the moment and in need of direction...someone please help on advice on what are my best options on treatment

Dear Nigel -

Sorry for getting in late here, but searching PubMed http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed for "CRPS Hanover," I found a practice group in the Department of Rehabilitation Medicine, Hanover Medical School, Hanover, Germany, that's published two articles in the last three years that seem to be largely on point for your concerns. There is a charge for downloading the articles. but the abstracts with one of the authors contact information are freely available:

Influence of the temporomandibular joint on range of motion of the hip joint in patients with complex regional pain syndrome, Fischer MJ, Riedlinger K, Gutenbrunner C, Bernateck M, J Manipulative Physiol Ther. 2009 Jun;32(5):364-71.

Department of Rehabilitation Medicine, Hanover Medical School, Hanover, Germany. fischer.michael@mh-hannover.de

Abstract
OBJECTIVE: This study evaluated if patients with complex regional pain syndrome (CRPS) would have an increase in range of motion (ROM) after myofascial release and a similar ROM decrease after jaw clenching, whereas in healthy subjects these effects would be minimal or nonexistent.

METHODS: Documentation of patients with CRPS (n = 20) was established using the research diagnostic criteria for CRPS, questionnaires, average pain intensity for the past 4 weeks, and the temporomandibular index (TMI). Healthy subjects (n = 20, controls) also underwent the same testing. Hip ROM (alpha angle) was measured at 3 time points as follows: baseline (t1), after myofascial release of the temporomandibular joint (t2), and after jaw clenching for 90 seconds (t3). Comparison of the CRPS and control groups was made using t tests.

RESULTS: Mean TMI total score and mean pain reported for the last 4 weeks were significantly different between the 2 groups (P < .0005). Hip ROM at t1 was always slightly higher compared to t3, but t2 was always lower in value compared to t1 or t3 for both groups. The differences of all hip ROM values between the groups were significant (P < .0005). Moreover, the difference between t1 or t3 and t2 was significantly different within the CRPS group (t1 = 48.7 degrees ; t2 = 35.8 degrees ; P < .0005).

CONCLUSIONS: The results suggest that temporomandibular joint dysfunction plays an important role in the restriction of hip motion experienced by patients with CRPS, which indicated a connectedness between these 2 regions of the body.

PMID: 19539119 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19539119

AND

Do occlusal splints have an effect on complex regional pain syndrome? A randomized, controlled proof-of-concept trial, Fischer MJ, Reiners A, Kohnen R, Bernateck M, Gutenbrunner C, Fink M, Svensson P, Clin J Pain 2008 Nov-Dec;24(9):776-83.

Department of Physical and Rehabilitation Medicine, Pain Clinic, Hanover Medical School, Hanover, Germany. fischer.michael@mh-hannover.de

Abstract
OBJECTIVES: Studies have suggested overlaps between various chronic pain conditions and painful temporomandibular disorders (TMDs). The objective of this pilot study was to assess the effectiveness of occlusal splint (OS) therapy on self-reported measures of pain in patients with chronic complex regional pain syndrome (CRPS) as compared with a nontreatment group.

METHODS: The design was a prospective randomized controlled clinical trial. Twenty patients with CRPS were randomly assigned to either the OS or control group. The patients in the OS group were asked to use the OS at nighttime and for 3 hours during daytime for a total of 7 weeks; the control group had no stomatognathic intervention. The primary outcome was self-reported assessment of CRPS-related pain on numerical rating scales. Secondary outcome measures were the Temporomandibular Index (TMI), and the Short Form 36 Health Survey (SF-36).

RESULTS: All patients had TMD signs and symptoms, but OS had no effect on CRPS-related pain on the numerical rating scale (P>0.100). The changes in the TMI scores over time were 16.6%+/-24.6% (improvement) in the OS group and -21.3%+/-25.9% (impairment) in the control group that was significant (P=0.004). There were no differences in the changes of SF-36 scores between groups (P=0.636).

DISCUSSION: The use of OS for 7 weeks has no impact on CRPS-related pain but improved signs and symptoms of TMD pain. Future studies should include an active control group and evaluate if long-term changes in measures of oral health impact general health in CRPS-related pain.

PMID: 18936595 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/18936595

Note: in reading the the names of the authors, the principal researcher is general listed first, while the name of the most senior participating scientist (if s/he is not the principal researcher) appears as the last name in the right.

I hope this is helpful. I suspect you can easily find their departmental homepage on the Net.

Mike