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Update on me...:( Update on me...:(

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Unread 05-17-2003, 09:55 AM
Update on me...:(

Pls know I'm always here for each of you... The past few weeks have been rougher than usually..as some of you know I was recently DX'd w/ a Vaginal Vault & Bladder Prolapse. My PCP referred me to a Uro-Gyn, supposedly one of the best here, he has a 2 month waiting list & NO cancellation list...sooo I'll wait.

I also developed a nasty case of Shingles in my right arm & hand about 4-5 months ago which lead into
Post Herpatic Neuralgia:

What is post-herpetic neuralgia?
Roughly 20 percent of those diagnosed with shingles go on to suffer long-lasting pain from post-herpetic neuralgia or PHN, a condition that can be more painful than shingles. Although most people suffer with shingles for about a month, the pain and skin sensitivity can continue for months or even years in some patients with PHN. PHN pain persists long after the shingles rash heals. Although invisible, the virus of herpes zoster can cause damage to the nerves, resulting in mild to severe pain. This pain of PHN may be sharp, piercing, throbbing or stabbing and may result in intolerable skin sensitivity to even the lightest touch. PHN occurs more often in older people and can last for months and even years.

What is the source of post-herpetic neuralgia?

The pain results from damage to the nerve fibers during the shingles infection. The pain of PHN is in the same area as the pain and rash of shingles. Some PHN patients feel pain in the exact same location as the rash, others have PHN pain in smaller areas within the rash region, and others feel the PHN pain in an area larger than the original rash site. Pain from nerve damage is among the worst types of pain. Consider a mild pain related to nerve injury: the sensation when banging the "funny bone," the area in the elbow where a major nerve crosses. Patients who have had a spinal tap, in which a needle pierces the nerve-rich area of the back, describe this as one of the most painful procedures they have ever had. Patients have described the pain of PHN as "deep and aching," "fire under the skin," "like electric shocks," and "unbearable shooting pain." For some PHN patients, even a light touch, like the pressure of a shirt, a gust of wind, or brushing the hair, can bring tears to the eyes. In other PHN sufferers, the painful area is sensitive to slight changes in temperature. Because the pain can be so awful, it can interfere with a person's life. For some PHN sufferers, all normal activity comes to a halt for months. Depression is common in people with PHN because of the severe pain and social isolation that can occur.

Who gets post-herpetic neuralgia?

On average, one of every five patients with shingles gets PHN. However, the risk of developing PHN increases with age -- that is, the older the person is when getting shingles, the more likely that PHN will develop.

How is post-herpetic neuralgia treated?

Because the virus is no longer present after the blisters dry up, the antiviral drugs used to treat shingles are not useful in patients with PHN. There is no cure for PHN. Rather, treatment focuses on relieving pain. The most commonly prescribed medications are strong pain relievers containing opioids, antidepressants, anticonvulsants, and a newly approved topical lidocaine patch. Most PHN patients have meaningful pain relief from one or a combination of these drugs. It is important to realize that every PHN patient responds differently to these different drugs. It is also very important that medications taken by mouth (antidepressants, anticonvulsants, and opioids) be started in small dosages. Every week or so, the dose is slowly increased until the patient begins to feel pain relief or complains of a side effect

In desperation, some patients have turned in the past to a procedure called transcutaneous electrical nerve stimulation (TENS). Electrodes from a small machine that can be worn on the body are attached to the painful area. When turned on, the machine sends small electrical impulses to the electrodes, which in turn send the impulses to nerves in the skin. The patient decides when the pain is so bad that the machine should be turned on.
The Nerves in my right arm are severely damaged..talk about pain & as if that wasnt painful enough, I was DX'd w/ RSD (Reflex Sympathetic Dystrophy):

CRPS/RSD has been divided into different stages. Depending on nature of injury, the stages vary in their duration. In the 17 patients suffering from venipuncture CRPS in our series, deterioration from stage I to stage III was measured in a few weeks up to less than 9 months. This is in contrast with CRPS in children in whom stages would stagnate, reverse or improve slowly.

In STAGE I , is a sympathetic dysfunction with typical thermatomal distribution of the pain. The pain may spread in a mirror fashion to contralateral extremity or to adjacent regions on the same side of the body. In stage one, the pain is usually SMP in nature.

This is the stage I'm in:

In STAGE II, the dysfunction changes to dystrophy manifested by edema, hyperhidrosis, neurovascular instability with fluctuation of livedo reticularis and cyanosis - causing change of temperature and color of the skin in matter of minutes. The dystrophic changes also include bouts of hair loss, ridging, dystrophic, brittle and discolored nails, skin rash, subcutaneous bleeding, neurodermatitis, and ulcerative lesions. Due to the confusing clinical manifestations, the patient may be accused of factitious self-mutilation and "Münchausen syndrome." All these dystrophic changes may not be present at the same time nor in the same patient. Careful history taking is important in this regard.

The pain is usually no longer SMP and is more likely a sympathetically independent pain(SIP). Atrophy in different degrees is seen. Frequently, the atrophy is overshadowed by subcutaneous edema. The complex regional pain and inflammation spread to other extremities in approximately 1/3 of CRPS patients. At stage II or III it is not at all uncommon for CRPS to spread to other extremities. At times, it may become generalized. The generalized CRPS is an infrequent late stage complication. It is accompanied by sympathetic dysfunction in all four extremities as well as attacks of headache, vertigo, poor memory, and poor concentration. The spread through paravertebral and midline sympathetic nerves may be vertical, horizontal, or both. The original source of CRPS may sensitize the patient to later develop CRPS in another remote part of the body triggered by a trivial injury. The ubiquitous phenomenon of referred pain to remote areas (e.g., from foot or hand to spine) should not be mistaken for the spread of CRPS. At STAGE III, inflammation becomes more problematic and release of neuropeptides from c-fiber terminals results in multiple inflammatory and immune dysfunctions. The secondary release of substance P may damage mast cells and destroy muscle cells and fibroblasts.

  • 1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes.

    2. Intractable hypertension changes to orthostatic hypotension.

    3. Intractable generalized edema involving the abdomen, pelvis, lungs, and extremities.

    4. Ulcerative skin lesions which may respond to treatment with I.V. Mannitol, I.V. Immunoglobulin, and ACTH treatments.Calcium channel blockers such as Nifedipine may be effective in treatment.

    5. High risks of cancer and suicide are increased.

    6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.

Stage IV is almost the flip side of earlier stages, and points to exhaustion of autonomic and immune systems. Ganglion blocks in this stage are useless and treatment should be aimed at improving the edema and the failing immune system. Sympathetic ganglion blocks, alpha blockers, including Clonidine, are contraindicated in stage IV due to hypotension. Instead, medications such as Proamantin (midodrin) are helpful to correct the orthostatic hypotension.

Chronic Pain: Reflex Sympathetic Dystrophy Prevention and Management:

Chronic pain is being mismanaged universally. Impatient surgeons try unsuccessfully to excise the pain. Internists load the patient with narcotics and depressing tranquilizers. Chiropractors try to cure everything with their fingers. Acupuncturists shoot darts at the patients. The inevitable failure in control of pain is compounded by the hostile attitude of the impatient healer. The victim suffers from magnified pain due to the side effects of "treatment". The physician considers the patient crazy and relegates the pain management to the psychiatrist who is not trained in the management of pain.Even this late in the twentieth century, the patient has to cope with the nonsensical accusation that "it's all in your head" where every kind of pain obviously resides.The most misunderstood and complex subject in medicine is the hyperpathic pain of sympathetic dystrophy. Understanding this self-perpetuating pain- which "never stops" - requires unbiased knowledge of physiology and pathology. Above all, it requires the open mind of a physician who can understand that there is no dicotomy between "psyche" and "soma", between "brain" and "mind", or between "true" and "imagined" pain.In contrast to somesthetic pain, sympathetic pain terminates in the limbic system. It can be more severe than the pain of cancer. It can be fatal: heart attack or suicide is more common among there patients than the rest of the population. It causes tremor, blepharospasm, flexion deformity, vasoconstriction, and severe vascular migraine headache. RSD is more common than previously assumed by clinicians. Trauma is not at the top of the list of its variety of etiologies. It may have its origin in the periphery: head, cervical spin, trunk, or extremities. It may just as well originate in CNS: spinal cord, brain stem, or cerebral hemispheres.Invasive surgical treatments in the form of sympathectomy, tractotomy, arthrodesis, or stimulative procedures are apt to fail in the long run. Narcotics, alcohol, and almost all benzodiazepines only exacerbate the sympathetic pain.The physician can substantially increase the rate of success in the control of this intractable pain by taking advantage of early diagnosis, aggressive physiotherapy, multiple sympathetic blocks, as well as epidural blocks and antidepressants.The goal of this book is to review the present knowledge regarding the understanding, prevention, and management of the scourge of reflex sympathetic dystrophy.

History "It would be a great thing to understand pain in all its meanings."
Peter M. Latham Reflex sympathetic dystrophy (RSD) is the most unpleasant and uncomfortable form of chronic pain. It is the extreme prototype of disabling chronic pain. Chronic pain is the type of pain that persists long after the original injury. Obviously, recurrent attacks of acute pain due to new and repetitive damages from cancer or recurrent heart attack cannot be considered chronic pain even though they may be of longstanding duration. It is estimated that approximately 30% of the general population suffers from chronic pain. One third of these patients suffers from RSD. The chronic pain of RSD is typified by a marked emotional connotation. It is invariably accompanied by anxiety, phobia, and neuropsychological disturbances in the form of irritability, agitation, and depression. Historically, chronic pain has been the subject of clinical debate among physicians for a few centuries. Greek philosophers considered the brain as the site of pain perception. The first references to hyperpathic sympathetic type of pain appeared in the literature in the late 1700s by the famous British surgeon Potts. He first mentioned that trauma can be the source of burning pain and atrophy of the extremity.The first report of amputation for treatment of this type of pain was by Denmark in 1813. Even though amputation seems to be a drastic and extreme form of treatment for RSD, even at the present time surgeons are performing amputation for RSD accompanied by osteoporotic fractures. Needless to say, no RSD patient should undergo amputation. Even multiple fractures in small bones of the foot can be corrected without surgery. Proper physiotherapy, weight-bearing, sympathetic blocks, etc., will always save the extremity from being amputated. However, amputation is done because of lack of understanding regarding the nature of RSD. It is done when all other measures have failed and especially because of the fact that only a small percentage of RSD patients are diagnosed in the early stages of the disease. By the time the disease becomes advance, the pathology takes a rapidly accelerating downhill course that may culminate in the disastrous procedure of amputation. Amputation not only does not cure RSD, but it can be the cause.In 1851 the French Father of Physiology, Claude Bernard,described the role of the sympathetic nervous system in preservation of milieu interne. He was the first to describe the sympathetic nervous system as being responsible for temperature regulation of the internal balance in the body.The first report of clear-cut pathologic sympathetic dystrophy was made by the American neurologist, S. Weir Mitchell,who reported for the first time the victims of sympathetic dystrophy on the wounded soldiers of the Civil War. He colorfully called this condition erythromelalgia, implying reddish sick pain. In 1867 he described the condition in more detailed and called it causalgia.......

The sympathetic nervous system innervates all the smooth muscles and the various glands of the body, and the striated muscle of the heart. The efferent sympathetic fibers which leave the central nervous system in connection with certain of the cranial and spinal nerves all end in sympathetic ganglia and are known as preganglionic fibers. From these ganglia postganglionic fibers arise and conduct impulses to the different organs. In addition, afferent or sensory fibers connect many of these structures with the central nervous system.

Your nervous system is composed of the central nervous system, the cranial nerves, and the peripheral nerves. The brain and spinal cord together form the central nervous system. The cranial nerves connect the brain to the head. The four groups of nerves that branch from the cervical, thoracic, lumbar, and sacral regions of the spinal cord are called the peripheral nerves.

Reflex Sympathetic Dystrophy Syndrome (RSDS) is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary, bodily functions such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with Reflex Sympathetic Dystrophy Syndrome.

The symptoms of Reflex Sympathetic Dystrophy Syndrome typically begin with burning pain, especially in an arm, finger(s), palm of the hand(s), and/or shoulder(s). In some individuals, RSDS may occur in one or both legs or it may be localized to one knee or hip. Frequently, RSDS may be misdiagnosed as a painful nerve injury. The skin over the affected area(s) may become swollen (edema) and inflamed. Affected skin may be extremely sensitive to touch and to hot or cold temperatures (cutaneous hypersensitivity). The affected limb(s) may perspire excessively and be warm to the touch (vasomotor instability). The exact cause of RSDS is not fully understood, although it may be associated with injury to the nerves, trauma, surgery, atherosclerotic cardiovascular disease, infection, or radiation therapy.

What is RSD?

Also known as Complex Regional Pain Syndrome (CRPS) — is a chronic neurological syndrome characterized by:

*severe burning pain
*pathological changes in bone and skin
*excessive sweating
*tissue swelling
*extreme sensitivity to touch

RSD/CRPS is best described in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path

RSD/CRPS development does not appear to depend on the magnitude of the injury. The sympathetic nervous system seems to assume an abnormal function after an injury

Since there is no single laboratory test to diagnose RSD/CRPS, the physician must assess and document both subjective complaints (medical history) and, if present, objective findings (physical examination).

Criteria for Diagnosing:

Complex Regional Pain Syndrome Type I (RSD):
  • The presence of an initiating noxious event, or a cause of immobilization

    Continuing pain, allodynia, or hyperalgesia with which the pain is disproportionate to any inciting event

    Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of the pain

This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction.

— RSD/CRPS is difficult for many physicians to understand. It is not surprising that family and friends do not understand the patient’s pain and disability. The pain from RSD is often as bad as claimed and may be even worse

RSD/CRPS is a clinical diagnosis. This means that the physician makes the diagnosis based on thorough history and physical examination. When seeing a new physician, it is a good idea to have a brief medical history with dates of various treatments and the response to them. Also include a brief summary of any hospitalizations and surgeries. It is helpful for the doctor to have a copy of this information before your appointment. Given the complexity of RSD/CRPS, it is helpful for the patient to keep their own set of relevant medical records.

RSD/CRPS can occur following surgery as well as a trauma. This does not mean that a surgery or injury was performed incorrectly.
Here I thot the PHN was painful I have to laugh for there is nothing I can do...
My Pain Dr's found this, my right arm has been becoming worse as far as pain & mobility...my Drs want to schedule a series of Sympathetic Blocks to attempt to improve the pain & stop it from spreading.
Angie (Adrite) has this condition in her abdominal region, I'm sure many of you remember her story...
I'm waiting to talk w/ her, as well as do some research on these blocks as they carry risks but doesnt everything. I know they go thru your neck, the Sympathetic Nerve thruout your body, I believe it is the biggest one we have.

I have been unable to work for the last few days due to this & my FMS/CFS flaring..I've lost 10 lbs in 2 weeks, didnt even realize it! That's a lot on my 5'6" 121# frame. The Drs say it is due to the RSD as are many of the weird Neurological symptoms that recently started.
My GP wrote me a letter to my Employer excusing me until Aug 15, so I can try to stop this nasty disease from spreading. I'm truly thinking hard about going on Long Term Disability. I have benefits thru my Company..good ones, for that I feel very, very blessed If something should happen, I will receive 65% of my check until I turn 65, I get to keep my Insurance too Thanks for listening my (((Sweet Sisters)))...I apologize for not being around as much, I still pop in everyday but I'm just faced w/ soo very much. Big ((((hugs)))) to each of you.....
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Unread 05-17-2003, 11:11 AM
Update on me...:(

I am soooo sorry that you are dealing with soooo much! I hope that you can get the disability. Losing my job seems to be the best thing that could've happened to me. Well, except for the loss of the $$$$ I am kind of hoping that somehow we can make it without my income, unfortunately I think that is but a dream.

The neuropathy thing is very interesting. I wonder if that is what is happening in my abdominal region. I'm very tender and sore there once again. For the first few weeks I was off it had gotten better and now it's worse again. My neurologist is looking into any tests that they can do to find out what is really going on.

I hope you know that we are here for you my friend. My goes out to you.
Unread 05-17-2003, 11:52 AM
Update on me...:(

I am soooooo sorry that you are having so many painful problems that seem to have no end.

My mom had shingles and did not develop the painful problem you have right now but I remember her telling me how awful they were.

I am glad that you are doing so much research for all of this and you never cease to amaze me with how much information you you find. I will say EXTRA prayers for you Dear Sister! It breaks my to see how much you are suffering from all of this right now. Please keep us posted on how your doing and we will all be thinking of you!

I also am glad that your job is one that you can get the disability and insurance, at least that is one less thing for you to have to worry about and can focus on finding some relief.

We love you!!!
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Unread 05-17-2003, 12:02 PM
Update on me...:(


I'm so sorry to hear you're having these problems with your health. You're such a support to everyone here, you don't deserve this!! I'm praying for you every day, that you get relief. We are all here for you, always s

Unread 05-17-2003, 12:32 PM
Update on me...:(

I, too, am sorry that you are going through so much right now! When it rains, it pours....so it seems. You will definitely be in my and !

You are indeed lucky to have good LTD benefits! I resigned from my job in January due to health problems and like (((Kim))) had hoped we could just do w/o my income. Here it is May and I know we can't and also that I still can't be gainfully employeed so...will be seeking state assistance.

Hang in there (((sister))) and know that we are all pulling for you!
Unread 05-17-2003, 01:02 PM
Update on me...:(

(((Sheri))) I am so sorry to hear of this latest diagnosis.... sounds sooo painful, sweetie I am glad you have the possibility of long term disability with what sounds like great benefits, that is such a wonderful safety net. It does sound like you need to take some time to , I'm glad your DR excused you for a while now.

You are always here for us, I hope you know we are here for you, too.
Unread 05-17-2003, 04:58 PM
Update on me...:(

(((((Sheri)))))) You give sooooo much of yourself, so no need to appologize for not being here as much You are in soooo much pain... and there you, with yet another pain.

My dad, who'd had a heart transplant and who's immune system was therefore depleted (in order to avoid reject of the new of the new heart), had shingles several times in the last 5 years of his life and I remember just how painful it was for him. And he never developped the complication you're presently dealing with.

Sending tons and tons of healing s your way. The is on for you, but you need to take care of ((((Sheri)))) first.
Unread 05-19-2003, 11:24 AM
(((( Sheri )))))

I'm sorry you are having to deal with these difficulties now... I'm not as good as you with the information... I can only offer hugs and listen. I hope you feel releif soon. I know all too well about being out of it lately.... Take care of yourself.... 's
Unread 05-31-2003, 04:07 PM
Sheri, Although I am late

posting to this thread I do wish you well and hope things work out for you. My daughter was just dx with shingles back in April and she too was in very much pain. She sometimes still has pain in her legs that very difficult for her. Along with that she caught menigitis. So please take care of yourself and maybe the disablity is a good thing. My prayers are with you.
Unread 06-02-2003, 11:28 AM
Update on me...:(

My (((Dear Sisters))),
First off, I want to apologize for not being around as much, my PC
was misbehaving
Luckily, it is now fixed
HS withdrawals are not fun

As far as an update, same 'ole stuff. I do have an appt w/ the Uro/Gyn tomorrow, my Pain Dr on Thurs & my GP, who is now treating my FMS, on Fri...oh yeah, cant forget my Counselor on Tues....what a week! I just wanted to drop by & say *Hello* & let you know I'm back....(((hugs))) to each of you.....

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