I have had RSD for over 10 years, It spread 6 years ago following a hip replacment. One of my biggest issues now is muscle wasting. My arms are so weak and painful. What if this muscle wasting goes to my lungs and or heart! What happens then- a ventilator? Just so petrified now thinking about this very real possibility..any thoughts?

Debbie

Debbie, I'm sorry you feel this fear. We all get scared at times, but there are so many different things we can do. Maybe you could get a tablet and write down the many different ways we can to 'prevention' We can do BREATHING EXERCISES, HBOT, it's expensive, but possible insurance will cover it one day or social security (dreaming) Building up our lung capaciity now is important, plus helps us relax our lungs. I'm sure there are tubes like we get in the hospital that help our lungs function better after surgery. There are stretching exercises. Interstitial Cystitus really is RSD and we can exercise to prevent. One of the best exercises is swimming. 86 degree min. temp.Some places are free-ymca kNOWLEDGE IS POWER We are not helpless-we can do a little something each day Diet plays a powerful role in our well-being. The highest anti-oxidant in the world is dark chocolate. #2 antii-oxidant is the Acai berry from the Amazon Forests. I became a distributor of this healthy chocolate so I can consume it at wholesale. This particular kind of chcolate is the ONLY one with a 'patent' on the cold-processing of making it. All other chocolate is heated, thus losing much of the nutritional value. At our local RSD support group meeting last month, we had a nutrionist talking to us about anti-inflammatory foods-superfoods, superfruits. That's very important to keep our immune systems built up and healthy. The right kinds of flavanoids rich foods are important also.

i HOPE this helps some. I'll share some researched information about healthy food, and exercise plan that helps us thru each day and not deteriorate. I wish you the best and know you can put some of these fears to rest by knowledge and activity. Even massage therapy-physical therapy does wonders for releasing toxins that accumulate in our lymph systems. We just need to find an experiences person
Please know we all care and want to help each other to not give up on taking care of ourselves from a lot of different directons. Your friend, loretta with soft hugs

Thanks for your suggestions- Most of them I do or did...I did HBOT 2x for about 30 sessions each, I do swim at my local Y- But I think the spread will happen when it happens no matter what I do, I was exercising my arms and legs and it spread there,,,,I believe this monster will go wherever it is going to go no matter what we do!

Hi Deb, I agree this is really individual results. What works for someone, doesn't always work for another. It's such a difficult disorder to understand, go thru, and even think of getting better. I've had this 15 years, following surgery. Wasn't diagnosed for 4 years. The last 6-7 years have been full body ,generalized, and internal. The internal is really difficult to deal with. I get scared too, but have to concentrate on being grateful for where I am at today. I know I could be in a wheelchair. After my surgery that brought on RSD, I had frozen shoulder. It took a good year of pt and massage therapy, really pure torture, to be able get near full range back. They told me it might happen to other shoulder and it did. Another long torture period. Then my left hand froze up from injury. I do remember who awful that was- to not be able to cut up my food, use my hand in any way, was misdiagnosed and knew inside, the Dr. was wrong- flew from AZ to Oregon and saw sports injury Dr. who knew in 1 minute. I'm grateful for that Dr. and coming back and getting good neuro and ortho and hand pt. Only got half of range back, but can use my hand for most things. I'm glad I keep fighting, my toes started freezing up ,curling up off floor and I went into water therapy to get my toes back down on floor-I believe if I hadn't fought I would be crippled and the possibilities you are scared of would be a reality.
I really hope you can stay strong, and push yourself to keep fighting the possibilities. I'm glad you shared your fears, as we can be of support to YOU and it helps us all evaluate our feelings too. Please don't ever give up and keep fighting. I wish you the best that is possible and please know we all care for you. Your friend, loretta with soft hugs

Dear Debbie -

What you are anticipating must be very frightening. I wish I could say unequivocally, that there was no chance of any organ failure with CRPS. The truth is, aside from anecdotal reports here and elsewhere on the Web, there appears to be very little in the medical literature on the subject. The closest I could fiind was this 1998 abstract of an article by Ralf Baron and Wilfred Jänig, when they were still publishing in German, [Pain syndromes with causal participation of the sympathetic nervous system] [Article in German], Baron R, Jänig W, Anaesthesist. 1998 Jan;47(1):4-23:

Klinik für Neurologie, Christian-Albrechts-Universität zu Kiel.

The efferent sympathetic nervous system is organized into subsystems that innervate and regulate via separate peripheral sympathic pathways the different autonomic target organs. This review discusses mechanisms through which this efferent system may be causally involved in the generation of pain. Clinical pain syndromes in which this may be the case are "complex regional pain syndromes" (CRPS) type I (previously reflex sympathetic dystrophy) and type II (recently causalgia). The "sympathetically maintained pain" (SMP) is a symptom (and not a clinical entity) that can principally also be present in other pain syndromes. An explanatory hypothesis, which may explain the clinical phenomenology of CRPS (different types of pain, swelling, autonomic, motor and trophic changes) and the mechanisms involved, is described and discussed. This hypothesis consists of different components that either have been tested and verified experimentally or which are still hypothetical. The hypothesis consists of changes in the primary afferent (nociceptive and non-nociceptive) neurones (sensitization, ectopic impulse generation) and of the neurones in the spinal cord (preferentially in the dorsal horn) which are secondary consequences of the changes in the primary afferent neurones ("central sensitization"). These changes are not specific for SMP. The centerpiece of the hypothesis is a positive feedback circuit that consists of the primary afferent neurones, spinal cord neurones, sympathic neurones and the pathologic sympathetic-afferent coupling. This coupling can occur directly via noradrenaline (or possibly another substance) at different sites of the afferent neurone (at the lesion site, remote from the lesion site in the periphery and in the spinal ganglion). The direct coupling requires that the afferent neurone expresses adrenoceptors. Indirect coupling can occur via the vascular bed or otherwise, e.g. by changes of the neurovascular transmission. The activity in the sympathetic neurones to the affected extremity can change. This change does not consist of a generalized increase of sympathetic activity but of a change of the reflexes (e.g., thermoregulatory and nociceptive reflexes). From this follows that the pathophysiologal processes operating in CRPS may occur at four levels of integration that interact with each other: effector organ [an organ that produces an effect, e.g., contraction or secretion, in response to nerve stimulation],* peripheral afferent and sympathetic neurone, spinal cord, supraspinal centres. Recent experimental investigations on rats show that the sympathetic nervous system is possibly also causally involved in the generation of inflammation and inflammatory pain. The mechanisms by which this occurs are different from those operating in SMP during CRPS. [Emphasis added.]

PMID: 9530442 [PubMed - indexed for MEDLINE]

* http://www.ndif.org/public/terms/13549-organ (NDI Foundation: nephrogenic diabetes insipidus)

http://www.ncbi.nlm.nih.gov/pubmed/9...m&ordinalpos=8

Then I used a PubMed function looking for "related" articles, and after going through over a hundred listings, found nothing on the effect of CRPS on organs, I did find, among other articles dealing with blood flow in the extremities, one I didn't recall reading before, it is a deep and amazing article that should be required reading for anyone in the area, Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome, Albrecht PH, Hines S, Eisenberg E, et al, Pain 2006;120:244-266 full text at http://www.rsds.org/2/library/articl..._PAIN%2006.pdf:

Abstract
Complex regional pain syndromes (CRPS, type I and type II) are devastating conditions that can occur following soft tissue (CRPS type I) or nerve (CRPS type II) injury. CRPS type I, also known as reflex sympathetic dystrophy, presents in patients lacking a well-defined nerve lesion, and has been questioned as to whether or not it is a true neuropathic condition with an organic basis. As described here, glabrous and hairy skin samples from the amputated upper and lower extremity from two CRPS type I diagnosed patients were processed for double-label immunofluorescence using a battery of antibodies directed against neural-related proteins and mediators of nociceptive sensory function. In CRPS affected skin, several neuropathologic alterations were detected, including: (1) the presence of numerous abnormal thin caliber NF-positive/MBP-negative axons innervating hair follicles; (2) a decrease in epidermal, sweat gland, and vascular innervation; (3) a loss of CGRP expression on remaining innervation to vasculature and sweat glands; (4) an inappropriate expression of NPY on innervation to superficial arterioles and sweat glands; and (5) a loss of vascular endothelial integrity and extraordinary vascular hypertrophy. The results are evidence of widespread cutaneous neuropathologic changes. Importantly, in these CRPS type I patients, the myriad of clinical symptoms observed had detectable neuropathologic correlates.

PMID: 16427199 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/sites/entrez

Not coincidently, I found the last article when I searched PubMed for "arteriole CRPS" and it was the ONLY article that came up. And the search occurred to me a couple of weeks after my neurologist advised me that if we were going to look for an organic cause of my striking loss of organizational abilities, spatial reasoning and the ability to calendar simple things in my head (all under the heading of executory functioning), on the one hand, and on significant and increasing memory issues, from not unusual word recall problems, to having to sneak a look at my check book to avoid transposing the 5 digits in my street address and having no memory of something I had read the day before, to literally the ability at times to form new memories, on the other hand. What he said was, if I wanted to focus specifically on he effect of CRPS induced vasoconstriction in the brain, we would have to look at the arterioles, the smallest blood vessel with any muscle tissue that could respond to nerve signaling. And that would require a brain CT angiogram.

However, with a lot of nuclear studies and the like under my belt in the last few years, including a coronary CT angiogram, my internist is advising me that this is something I may want to give some reflection to jumping into. That said, if you are seriously concerned about the risk of specific organ damage secondary to CRPS, I would suggest you consider discussing with your physicians a CT angiogram of said organ(s), with specific emphasis on the arterioles; I would also show them Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome, Albrecht PH, Hines S, Eisenberg E, et al.

be well,
Mike


ps For the last few weeks, I've been working on a form that has required me to basically go over every document I've retained for the last 20 years, exclusive of client files now in (expensive) storage. Two things were particularly hard. One was experiencing the sense of hope I felt for "my life" before this hit me. The other was all of the expectation that I put in treatments that didn't pay off along the way.

Then the other night, I was reading an article when these words leapt off the page:

Hope is the enemy of acceptance.

Bottom line, sometimes we can strive to understand and change things, other times we just have to maintain awareness, take notes and go with the flow, even if that flow leads us back to the source out of which we arose in the first place.

Thanks for your responses and for caring- It is so good to know I have this board to come to! Maybe with all the up and coming research with stem cells etc. we will have a fighting chance...

Debbie

Debbie, I felt the same way. I am a planner so RSD has really been difficult to accept. I was constantly thinking what if..., what if..., what if... My husband would say live one day at a time but i can't. I finally went to see someone and they said just what my husband said but she also wrote down the "phrase of compassion": Of course i feel______.
and I don't know what is going to happen
but right now I can___________.
I made a few copies and put them around my house and every time my mind would start to think ahead I would say the phrase and fill in the blanks. It was amazing how it kept me focused on here and now-one day at a time. I still struggle but I hope this can help you as it has helped with me. momof4

Hope is the enemy of acceptance. When u wrote this it also leapt of the page to me b/c when i went to a therapist to help me accept RSD I felt acceptance was the enemy of hope. As i began to accept the fact that I have a chronic illness i realized hope is still there. That although we have to accept RSD it doesn't mean we can't hope for breakthru with medicine, treatment, or remission. Now I can say, I have RSD but I continue to Hope. momof4

Dear momof4 -

As one who has spent about as much time and energy chasing information in this as anyone (although admittedly only pursuing of late those treatments that (1) were supported by reliable literature, (2) were not contrindicated for me and (3) I could afford) I have found that I use the gathering of information as a means of blotting out some of the experience of RSD, even if it is only at the emotional level.

In other words, to the extent I am not allowing myself to fully experience my emotional reactions to RSD (even if they are terror, hopelessness, fear, etc.) in the name of hope, then hope is indeed the enemy of acceptance. Only once I can look the thing square in the eye, down to my deepest levels of dread, can I say that I have accepted RSD. And here, acceptance, becomes a good thing indeed, for as I open myself fully to the most unpleasant of emotional states, at least over time, I can find peace within them, as paradoxical as that may sound.

Think of it as a good existentialist challenge.

Mike

ps A few months ago, I showed The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009; 25:273-280, full text at http://www.rsds.org/2/library/articl...lexanderGM.pdf (in up to 40 years of following 656 individual adult patients who had CRPS-1 for a minimum of one year, there was no case of spontaneous remission: in kids it's an entirely different story) to a doctor who had been treating me for a long time and asked him why when I came to him he said that most cases go into remission. He replied, " . . . most people come to me and they're in great pain. They're frightened. What are you going to do? You've got to give them hope!"

Maybe it's a generational thing, but I better connected with the first doctor who diagnosed me, who looked at me with his dark Syrian eyes, a year or two later, and said, "RSD is lifelong and progressive; you will get worse." Then too, Dr. No. 1 did refer me to a pain psychologist who in turn referred me to an MBSR teacher, who assigned everyone in the class The Wisdom of No Escape and the Path of Loving Kindness by Pema Chödrön, so indirectly, perhaps he did his job: in my case.

But in general, it's been my experience that doctors are way too light, in telling patients all they know of the likely course and effects of this disease - which according to Schwartzman et al, above - seem pretty well settled for the individual patient by the one year mark. Would that it were otherwise, so that the healing process could begin that much sooner.