New member with RSD

Hi Anthony and welcome to Healing Well's chronic pain forum. I am glad that you found us but very sorry that you have to be here. I do hope you will decide to hang out here at the forum, as we do have members afflicted with RSD.

You have heard from Laura who also has this condition and she is always full of good tips and ideas to help manage this problem. Just do not give up or in, because of this condition. You did not give much info to us as far as what treatment you are receiving so its is really a little difficult to know where you are treatment wise.

I hope that you will come back and give us a little more input about yourself. Take care.

How did everyone get diagnosed with rsd.I would like to know.what kind of tests are needed to diagnose?I don't appear to have any major swelling or discoloration in my foot but I have what feels like tarsal tunnel in the left foot with negative emg's and nerve conduction(although I know you can't diagnose it by that).

I do have sudeck's atrophy and osteoporosis in that foot and a little in the other one but the podistrist said sudeck's atrophy can be caused by other things other than rsd. I have multiple allergies and I didn't have them before and ridged nails and graying hair.I but a bandaid on(latex free)then later when I peeled it off the skin came off with it.

I need to know what tests to ask for.As of now I am afraid to take my anihistimes for my allergies cause I read it makes rsd worse if thats what I have.This all started after I will immobile for 3 months from complications of status asthmaticus.

(Edited for easier reading) Thanks! SE

Post Edited By Moderator (Screaming Eagle) : 7/11/2011 8:21:10 AM (GMT-6)

Here Kitty…this will explain it…

en.wikipedia.org/wiki/Complex_regional_pain_syndrome

…….and again…. rarediseases.about.com/od/rarediseasesr/a/012205.htm


SE

CRPSpatient, what type of doctor do you see? My PM doctor is trying his best and I trust him greatly but i cant help wondering if soemthing else could be done for me.

Also wondering, how it was determined about your internal involvement?

Nana68, I was dx'd based on my symptoms and history. However last week I had a small fiber nerve test and my PM doctor feels that these results give a pretty good confirmation of the dx. Something about people with CRPS have lack of, damage to, or overhyperactivity of the small nerve fibers in their skin. This is something that an EMG and nerve conduction studies will miss!

Hi Shell,

I used to see an anaesthetist who had further qualifications in pain management and a particular interest in CRPS. He and I had a few issues though, and my dystonia was beyond the realms of his expertise, so he referred me on.

My current doctor has many hats. He is a neurologist but his primary specialty is pain management and rehabilitation. My internal involvement has been diagnosed just as CRPS in general usually is - signs/symptoms, and because every other diagnosis has been excluded. The big red flag is that the internal problems came on as my CRPS started going full-body - and if I have a bad flare the internal stuff goes haywire as well, irrespective of any meds. The other clue is that my other problems are all signs of autonomic dysregulation.

My biggest problem is with gastroparesis - I came very close to death a couple of years ago because I couldn't keep any food down and eventually ended up in hospital weighing just 28kg (I weighed more than that as a fit and active 10 year old...). In addition, I get a lot of GI pain that is very similar in character to the external body pain of CRPS. I also have a lot of trouble regulating my heart rate and blood pressure. Like with the gastroparesis, this all started around the time my CRPS started getting really aggressive and I'm under a cardiologist who can't find any explanation for it. I have low BP and orthostatic hypotension into the bargain, and without meds to keep my blood pressure up I sometimes can't even sit, never mind stand up without getting dizzy.

What treatments have you had Shell, other than pain meds? I know you said that you can't handle some of the other meds - are you talking about the typical nerve pain meds like Neurontin and Lyrica? Have you tried some of the less commonly used ones like Cymbalta or even Topamax?

Although it's an opioid, Methadone is sometimes better for CRPS patients than other narcotics - it has some activity as what is called an NMDA-receptor antagonist. NMDA receptors play a role in a lot of pain pathways - in particular a process called 'wind up', which a lot of research suggests is central to development and maintenance of CRPS pain. This is the same rationale for using ketamine to treat CRPS patients. I guess that's another one to consider if you have access to it. I have had a pretty bad time with it because my body is horrendously sensitive to it, but I know a lot of people who've had infusions and most get good relief from it - I think it's more difficult for you guys to have done, but here in Australia it's commonplace - I think I know only one person here with CRPS who's not had an infusion.

Nana - I was always led to believe that Sudeck's Atrophy was just yet another name for CRPS/RSD/etc. Diagnosis is usually made on history, clinical signs and symptoms. Tests are only useful up to a point - a positive EMG/nerve conduction study/bone scan/*insert test here* can be used to help diagnose CRPS, but a negative cannot be used to rule it out. Or as my old clinical pathology lecturer used to say - "Absence of proof does not mean proof of absence".

Whatever is going on - are you seeing a pain management specialist?

Laura

I don't have alot of pain or atleast what I think of pain,not where it is not tollerable anyway.My problem is the stiffness and burning,it was just in one foot/lower leg and is creeping into the other.my chest and back shoulder blade area get it sometimes.I did have low vitamin d for a while.I don't know what should I do for the muscle tightening?I really don't want anything thats gonna cause more side effects.

Shell - I'm sure I've got some stored on another hard drive somewhere...I've got a big CRPS file, and I can't find it. I did have a look on PubMed for you and came up with this article... I can't get the full text, so I can only go on what's in the abstract, but I'm sure your doctor would be able to access the full text.

Am I allowed to post an article link here? I hope so - http://www.painjournalonline.com/article/S0304-3959(09)00368-6/abstract

      

I'll go searching again tomorrow :)

Laura

  (yes!...you are fine Laura!) You ladies are doing a great job!

It's all about support!..and you're getting the job done!

Links to article's are fine as long as there in no monetary benefit,

such as sales for items and or information.

Thanks SE

Post Edited By Moderator (Screaming Eagle) : 7/11/2011 8:26:27 AM (GMT-6)

My best friend has had RSD for about 5 years and she just went to the Calmare Clinic in New Jersey for a few weeks of treatments (after trying several methods, including tons of nerve blocks) and after the first day she felt better than she had the entire time she has had RSD. She just completed the treatment and is pain free. I would look into applying to be a patient!!! It's a miracle!

i was diag. after a car accident 20 yrs aga with rsd in clavicle, chest & upper arm, places i haven't heard of except when people have entire body rsd . treatment then was archaic . ice packs!!!!! etc.... i'm immune to meds , especially narcotics . have used compound numbing cremes . don't do a thing . after cervical epidural which caused more muscle spasms in my back from fibro, i've still decided to try 2 more injections to see if nuero. surg. can find correct site before i give up on that idea . my next step is scs . i'm just afraid it will flare up fibro. well, i guess that's why trials r good . i've been told good sources of info are : RSD.ORG & RSD Hope .org . i haven't checked them out yet but was given info from someone who has allover body rsd . good luck to all sufferers . so glad i found this site . 1st time i've met so many people with rsd .