So sorry about your pain. I hope the Ultram is strong enough, if not, ask for something stronger when you are flaring. I am convinced that my flares made me sicker on a consecutive basis.

Do you have a PT? I had a really great one for a year, I just stopped seeing him this week. He had an interest in RSD and some experience with it, and was definitely the single most important member in my team. I usually saw him twice a week and he knew me and my symptoms very well. Periodically I would question whether I truly had RSD, but he knew my symptoms and would point them out to me. He was the first pratictioner to notice my HBP. And he encouraged to go to Boston for my blocks when my RI doctors were recommending some bizzarre cortical therapy. In any case, I haven't made any progress with my strenth or ROM in PT for a while so he felt it didn't make sense for me to continue the PT at this time, so I just stopped going there this week. I have to say that I am happy that I won't be driving so far (it was about 18 miles each way) for now. But I'll miss him a lot and I am very indebted to him for all he did for me.

I was referred to him by a PM doc in RI and all of my visits were covered by WC. Periodically WC would start to deny my visits, for a while I even used my United Health to pay for them.

BTW, Warm water therapy is usually recommended for feet. I've looked into it lately a few times for my right leg, but haven't gotten it yet. RI has a WC Center for victims with a warm water pool, but the pool is broken.

Take care, only 2 days left in the work week and you will have a weekend to chill. I hope this message is helpful for you.

Sorry for what you went through with this guy. I will say it takes me back to the thread we just did talking about Drs., Neurologist especially. I have seen 4 and if it doesn't show up on their test then you don't have it. That's how I feel they think. At least most of them. I do know there are some on here that see Neurologist but personally I think they are a waste of time. None of them believed in TOS because it doesn't show on their test and if nothing shows up then you have nothing going on in their book.

I would definatly get this Drs. file on you to see what he had to say about the visit and I would fight for another appt. with an Anesteologist or another PM. Dr.

My thing is, DONOT give up on seeing what Drs. you need to see.

Hope you start feeling better soon.

Ada

Hope4tB,

For your one question about neuropathy,
My neuro explained to me that Mine (feet and hands) is normal with rsd.
So, that would be a Yes.

Be well, and mindful of keeping your faith,
that you will find a doctor who will help you better manage your rsd!

Pete

Have you given thought to hyperbaric treatments- the people I know had it covered by WC

Hi hope4thebest,
I am sorry you did not get any answers from this neurologist. I know from your previous posts that you were hoping he would be the one with the answers. HIs anwers must have been so frustrating. As for feeling helpless, I think we all go through that at some time or another. But I also think that this site and the people on it give us the courage to fight another doctor or another ins company (WC). Keep trying for another appt. Is is tough but the right doctor my be the next one.
Have a good weekend!
Hopeful Hang is there.
Hopeful

Another thought I had - my lidocaine was not suggested by my doc until my RSD had spread. In his opinion, it is not used until the RSD or pain becomes defined as full body, and it may be looked upon that way by insurance companies, too.

How are you? Happy Friday...I hope you have a relaxing weekend.

Sandy

Hi All
My pain and burn flare is stabilizing.... Hobbling, limping,and the mobility scooter all help.....I wore a brace during warm pool therapy to keep my foot stable..any flexion causes it to go through the roof..(I wish everyone could get in a warm water pool..it's so good for mental well-being and the warm water, 93 degress, is soothing..it should be an automatic treatment for RSD'ers) please try and get into a pool..

I e-mailed the neuro with a couple of questions...he really is a nice person and took the time to answer my e-mail..he refered me to a couple of neuro's who have a special interest in RSD..I guess that's where I should have gone in the first place (for more info on ketamine, etc..)
He said full body spread is very rare........

Pete, he seems to think that neuropathy and RSD are not really related, at least in my case...(oh boy..what other health conditions are lurking in my body...)

Sandy..he agreed that lidocain infusions are a good treatment option but I wonder why would the docs wait until it is full body..wouldn't early lidocain treatments catch it early so that it doesn't spread further? I hope you get some relief...I know you have been in terrible pain for so long..keep checking on that warm water pool to find out when it gets fixed..I know it will make a huge difference for you..especially with cold weather around the corner..

Mike, thanks for all your good research regarding Stanford..I had an appt. there last year to confirm the RSD...I guess Dr. Mackey would have been the one to see...It seems my new hobby is looking for (appropriate ) doctors.
My old hobby, hiking, has been relegated to fantasy head-hiking...

Ada, my next appt.search will be with an anasthesiologist...I have never been treated by an anasthesiologist...maybe he/she will try and get me a bier block...

Debbie,...I am amazed that someone's WC insurance paid for RSD hyperbaric treatments...

Hopeful, I know you have a neuro appt. coming up..I'll be so curious to see how it goes for you..you must be so exhausted working at a school all day..are you a teacher? What grade level? I truly commend you for hanging in there..I just hope you will be able to take a break if the pain gets even more intolerable..

Loretta, Mslday, Bobber, Allen, and each and everyone one of you on this board keep me SANE......

I've had bier blocks and lidocaine infusions at stanford, and i'm on medicare/medical and they covered them.

and as far as the ketamine infusions, it is a "street drug" but at least during my infusions i was also given versed so if i had any hallucinations during it i don't remember, and afterwards i was put on ativan for 2 weeks to prevent them from occuring. the only time i did hallucinate was the time period after the infusion to the next day when i didn't have the ativan cause we had to get it filled/drive 6 hours from la back north to santa cruz. and they weren't bad, i just had a constant radio playing in my head. and that was definately worth the 6 weeks (from the 1st infusion) and the 5 months (from the 2nd infusion) of no pain and no meds.

if u want a certain treatment don't be timid and not be ur own advocate. if you want something done, then be firm about it. don't let doctors or the system run u over and take away your choices. it is your life, and you deserve to try the treatments that you want.

Sandy - I had an in patient 5-day lidocaine infusion in Philadelhia via Dr. S. im Feb. 2004, which my insurance co. covered in full, notwithstanding the fact that I had at best minimal evidence of spreading. Although standards may have changed in the intervening 5 years, I don't know.

One of the nurses there told me that it worked for a strong majority of people (I've for forgotten if she said 2/3 or 3/4 - who then came back for periodic boosters). Unfortunately, I was apparently in the minority for whom it did no good at all.
______

hope4the best: I have no idea what the "neurologist" was saying when he thought that RSD and nueropathy were unrelated!!! (Although if it's a certain Dr. R. at UCSF, I've been advised that he's a little stick in his ways.) There is now little mystery is to why neuropathy appears in people with CPPS. I just overlooked this in your post on this thread and previously: a little something called small fiber neoropathy.

This one has to be explained in two steps. First, the is a very omportant article if you're not already familiar with it, the first article outside of brain studies to observe explicity anatomical changes in CRPS patient, "Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy)," Oaklander AL, Rissmiller JG, Gelman LB, Zheng L, Chang Y, Gott R, Pain 2006;120:235-243, full text athttp://www.rsds.org/2library/article_archive/pop/oaklander_pain_2006.pdf :

Abstract

CRPS-I consists of post-traumatic limb pain and autonomic abnormalities that continue despite apparent healing of inciting injuries. The cause of symptoms is unknown and objective findings are few, making diagnosis and treatment controversial, and research difficult. We tested the hypotheses that CRPS-I is caused by persistent minimal distal nerve injury (MDNI), specifically distal degeneration of small-diameter axons. These subserve pain and autonomic function. We studied 18 adults with IASP-defined CRPS-I affecting their arms or legs. We studied three sites on subjects’ CRPS-affected and matching contralateral limb; the CRPS-affected site, and nearby unaffected ipsilateral and matching contralateral control sites. We performed quantitative mechanical and thermal sensory testing (QST) followed by quantitation of epidermal neurite densities within PGP9.5-immunolabeled skin biopsies.

Seven adults with chronic leg pain, edema, disuse, and prior surgeries from trauma or osteoarthritis provided symptom-matched controls. CRPS-I subjects had representative histories and symptoms. Medical procedures were unexpectedly frequently associated with CRPS onset. QST revealed mechanical allodynia (P < 0.03) and heat-pain hyperalgesia (P < 0.04) at the CRPS-affected site. Axonal densities were highly correlated between subjects’ ipsilateral and contralateral control sites (r = 0.97), but were diminished at the CRPS-affected sites of 17/18 subjects, on average by 29% (P < 0.001). Overall, control subjects had no painful-site neurite reductions (P = 1.00), suggesting that pain, disuse, or prior surgeries alone do not explain CRPS-associated neurite losses. These results support the hypothesis that CRPS-I is specifically associated with post-traumatic focal MDNI affecting nociceptive small-fibers. This type of nerve injury will remain undetected in most clinical settings.

Then look at, among a number of articles, "The diagnostic criteria for small fibre neuropathy: from symptoms to neuropathology," Grazia Devigili, Valeria Tugnoli, Paola Penza, Francesca Camozzi, Raffaella Lombardi, Giorgia Melli, Laura Broglio, Enrico Granieri and Giuseppe Lauria,Brain (2008), 131, 1912 -1925, at 215, free full text at http://brain.oxfordjournals.org/cgi/...131/7/1912.pdf

Criteria to diagnose SFN
Patients were diagnosed with SFN when at least two of the following examinations were abnormal: (i) clinical signs of small fibre impairment (pinprick and thermal sensory loss and/or allodynia and/or hyperalgesiaWithin the epidermis), which distribution was consistent with peripheral neuropathy (length or non-length dependent neuropathy); (ii) abnormal warm and/or cooling threshold at the foot assessed by QST [quantitative sensory testing]; (iii) reduced IENF [intraepidermal or "within the epidermis" - nerve fibres] density at the distal leg.

SFN was ruled out in the presence of: (i) any sign of large fibre impairment (light touch and/or vibratory and/or proprioceptive sensory loss and/or absent deep tendon reflexes); (ii) any sign of
motor fibre impairment (muscle waste and/or weakness); (iii) any abnormality on sensorimotor NCS.

I suspect it's the second of the two cited paragraghs which explains why so many of our neurologists have asked us to "grin and bear" an Electromyogram and Nerve Conduction Study (EMG/NCS), to rule out large or or motor fiber imparement, where the alternative would be to sumite to a small "punch" skin biopsy in or very near our most tender regions.

Mike

Dear hope4thebest,

I think you ran into a dr. that instead of just staying "I am not to informed about RSD", he just made up excuses.

First, let me ask what part of the country do you live in? I have found it's best to go to teaching hospitals and research the doctor and ask the office prior to going t see the dr "If they work with RSD patients". The phone can be a great tool. And, if the office says "we don't want to give out that information" than it's the wrong doctor to see. There are many doctors who have a lot of experience with this type of condition, don't get discouraged.

Good Luck....

Gabbycakes