My thoughts, feelings, and opinions, as yes, though in continuous agonizing pain, underweight for six foot, I can think. And feel. And wonder why they treat this the way they do. I don't run and if I walk, not on a wheel.
I welcome readers: those here to download and cheat, my apologies:
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Wednesday, August 15, 2012
Medical Marijuana and Osteoporosis
Osteoporosis is a degenerative skeletal disease characterized by a deterioration of bone tissue. Patients with osteoporosis are at risk for suffering multiple fractures and other serious disabilities. Approximately 10 million Americans over age 50 suffer from osteoporosis, according to the US Surgeon General’s office, and another 34 million are at risk for developing the disease.
Initial references regarding the potential use of cannabinoids to protect against the onset of osteoporosis are available in the scientific literature beginning in the early 1990s. To date, however, no clinical work has taken place investigating the use of cannabis for this indication.
Writing in the January 2006 issue of the Proceedings of the National Academy of Sciences, investigators at the Bone Laboratory of the Hebrew University in Jerusalem reported that the administration of the synthetic cannabinoid agonist HU-308 slowed the development of osteoporosis, stimulated bone building, and reduced bone loss in animals. Follow up research published in the Annals of the New York Academy of Sciences in 2007 reported that the activation of the CB2 cannabinoid receptor reduced experimentally-induced bone loss and stimulated bone formation. Investigators have previously reported that mice deficient in the CB2 cannabinoid receptor experienced age-accelerated bone loss reminiscent of human osteoporosis.
Though the role of the endocannabinoid system in the regulation of bone mass is not yet well understood, experts are hopeful that cannabinoids and the cannabinoid receptor system may be "A promising target novel target for anti-osteoporotic drug development."
Medical Marijuana and Chronic Pain
As many as one in five Americans lives with chronic pain. Many of these people suffer from neuropathic pain (nerve-related pain) -- a condition that is associated with numerous diseases, including diabetes, cancer, multiple sclerosis, and HIV. In most cases, the use of standard analgesic medications such as opiates and NSAIDS (non-steroidal anti-inflammatory drugs) is ineffective at relieving neuropathic pain.
Survey data indicates that the use of cannabis is common in chronic pain populations, and several recent clinical trials indicate that inhaled marijuana can significantly alleviate neuropathic pain. A pair of clinical trials recently demonstrated that smoking cannabis reduces neuropathic pain in patients with HIV by more than 30 percent compared to placebo.
In 2008 investigators at the University of California at Davis assessed the efficacy of inhaled cannabis on pain intensity among 38 patients with central or peripheral neuropathic pain in a randomized, placebo-controlled, crossover trial. They reported: "[C]annabis reduced pain intensity and unpleasantness equally. Thus, as with opioids, cannabis does not rely on a relaxing or tranquilizing effect, but rather reduces both the core component of nociception (nerve pain) and the emotional aspect of the pain experience to an equal degree."
Preclinical data indicates that cannabinoids, when administered in concert with one another, are more effective at ameliorating neuropathic pain than the use of a single agent. Investigators at the University of Milan reported in 2008 that the administration of single cannabinoids such as THC or CBD produce limited relief compared to the administration of plant extracts containing multiple cannabinoids, terpenes (oils), and flavonoids (pigments).
Researchers concluded: "[T]he use of a standardized extract of Cannabis sativa ... evoked a total relief of thermal hyperalgesia, in an experimental model of neuropathic pain, ... ameliorating the effect of single cannabinoids," investigators concluded. ... "Collectively, these findings strongly support the idea that the combination of cannabinoid and non-cannabinoid compounds, as present in [plant-derived] extracts, provide significant advantages in the relief of neuropathic pain compared with pure cannabinoids alone."
In 2009, an international team of investigators from the United Kingdom, Belgium, and Romania affirmed these preclinical findings in a clinical study of intractable cancer pain patients. They concluded: "[I]n this study, the THC/CBD extract showed a more promising efficacy profile than the THC extract alone. This finding is supported by evidence of additional synergy between THC and CBD. CBD may enhance the analgesic potential of THC by means of potent inverse agonism at CB2 receptors, which may produce anti-inflammatory effects, along with its ability to inhibit immune cell migration. ... These results are very encouraging and merit further study."
Medical Marijuana and Dystonia
Dystonia is a neurological movement disorder characterized by abnormal muscle tension and involuntary, painful muscle contractions. It is the third most common movement disorder after Parkinson's disease and tremor, affecting more than 300,000 people in North America.
A small number of case reports and preclinical studies investigating the use of cannabis and cannabinoids for symptoms of dystonia are referenced in the recent scientific literature. A 2002 case study published in the July issue of the The Journal of Pain and Symptom Management reported improved symptoms of dystonia after smoking cannabis in a 42-year-old chronic pain patient. Investigators reported that subject’s subjective pain score fell from 9 to zero (on a zero-to-10 visual analog scale) following cannabis inhalation, and that the subject did not require any additional analgesic medication for the following 48 hours. "No other treatment intervention to date had resulted in such dramatic overall improvement in [the patient's] condition," investigators concluded.
A second case study reporting “significant clinical improvement” following cannabis inhalation in a single 25-year-old patient with generalized dystonia due to Wilson’s disease was documented by an Argentinian research team in the August 2004 issue of the journal Movement Disorders.
Also in 2004, a German research team at the Hannover Medical School reported successful treatment of musician’s dystonia in a 38-year-old professional pianist following administration of 5 mg of THC in a placebo-controlled single-dose trial. Investigators reported “clear improvement of motor control” in the subject’s affected hand, and noted, “[Two] hours after THC intake, the patient was able to play technically demanding literature, which had not been possible before treatment.” Prior to cannabinoid treatment, the subject had been unresponsive to standard medications and was no longer performing publicly. “The results provide evidence that … THC intake … significantly improves [symptoms of] … focal dystonia,” investigators concluded.
By contrast, a 2002 randomized, placebo-controlled study investigating the use of the synthetic oral cannabinoid naboline (Cessamet) in 15 patients afflicted with generalized and segmental primary dystonia did not show a significant reduction in dystonic symptoms. Investigators speculated that this result may have been dose-related, and that administration of a higher dosage may have yielded a different outcome.
At least one recent preclinical trial indicates that both synthetic cannabinoids as well as high doses of the natural non-psychoactive cannabinoid cannabidiol (CBD) could moderate the disease progression of dystonia in animals.[5] Limited references regarding the use of cannabinoids for dystonia in humans[6] and animals[7] in the 1980s and the 1990s also appear in the scientific literature. It would appear that additional, larger clinical trials are warranted to investigate the use of cannabis and cannabinoids for this indication.
http://www.kindgreenbuds.com/medical-marijuana/dystonia.html
Marijuana Strain Library -Brains Es Marijuana Strain
| Brains Escape [KC Brains] Indica Origins - Edelweiss x Brazil's Best x KC 606 Flowering - 63-77 days Harvest - End September | |
Through the 1900s, Switzerland seemed to be on the verge of a progressive marijuana policy, indeed of becoming the next pot spot. KC Brains was among several growers who bred Swiss seeds in anticipation of a more liberal legal climate. Edelweiss is a distinctive Swiss strain that emerged in this period, based on a Swiss indica with a strong local reputation. Unfortunately, the Swiss government retreated from looser cannabis laws and began to crack down on pot culture, especially if it was "imported". Many growers who had tested Switzerland's evolving pot policies were charged as criminals or shown to the border.
KC Brains brought Edelweiss with him back to Holland, where he combined it with KC 606 and a Brazilian strain seasoned with sativa from South Ecuador.
The result is a fresh lemon weed whose buzz feels more "high" than "stoned". The Brains Escape pattern of growth is decidedly indica, delivering big plants with incredibly wide, dark, fat leaves. This strain's long growing season rewards outdoor growers who vegetate starter plants indoors or in a greenhouse, and then transplant outside to flower for 9-12 weeks before the frost starts.
This is an enjoyable tasting weed to share with friends. it goes well with playing in the park, going on a hike, or seeing outdoor music shows. A complimentary weed for summer, Brains Escape can also bring back that summer feeling during any season of the year.
IMHO-for those with severe pain: gather from a good, reliable coop and "limp" for the hills to smoke a bowl: alone. I thought that was why they call the last part "Escape" as if sharing it with other and partying with them is "escaping?" Nope-if you want to share, get some hash, a less expensive bud. Pack the bowl and pass the bong.
Don't use ANY form of "Brains" for sharing!!! On second thought: let them breathe second hand smoke and they can consider that a gift. And since I don't need people knowing my business and assuming I will get them fucked up for free: forget it!!!!!
I am sure that had I had a guy running the coop I was using, it would have been a much better bud: since the guy is good a photographing the marijuana of others' efforts for his site: then yeah: we'd still be doing busiess and since he can't weigh his bud: frequently-I did come out a gram or so ahead so
At least once in a while. Sigh, where ya buy-donate, sorry! The guy was an ass-and as far as I see it, this photo captured my sentiment very well:
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| real "Brains" from another more reputable Co-op. |
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| Cornholio's version-got a buzz but little else |
JJ's assigned grade: A+++++
Tuesday, August 14, 2012
IN A FOUL MOOD-IT'S CALLED REAL PAIN, PHYSICALLY
I need a frigging break. I hurt so badly right now, it's hard to type; and with the sun coming up, as crazy as it sounds, I may things have happened.
From CORNHOLIO to just not having any bud money and having to rely on the toxic shit, I am not good canidate for discussions or just being in a room full of noisy people, or really to talk to anyone right now.
I'll be honest-the pain is as bad as it has ever been. I am gonna crawl into bed-with my "wake and bake" in a very large cup-it's called efficency, and if I could, I would hire someone to haul off all my laundry and DO IT.
Nevertheless, I feel terribly shitty, and Idk, wallowing in it, seems like the thing to do right now....ugh-I had to put the O2 on for "comfort" and it helped briefly.
I got about an hour's sleep-but light is approaching rapidly. I must get out of this room, and do it now.
qiiet. warm. dark.
Perfect...just not mmj and may be that way a few days, so if I am incognito-this is why.
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| tossing and turning even on an air mattress (c) 2012 |
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| no real sleep since I had Afgoo-so there we have it. (c) 2012 |
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| THIS is what CRPS looks like. DOREEN tells Pat she has RSD. (c) 2012 |
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| Uh, I have it, dickface-she's just been booted from every pain clinic in WA for drug-seeking (c) 2012 |
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| I went to 2 docs; my pain mgmt and the one who issued my card-which does NO good right now. (c) 2012 |
EXCEPT to dream about when my check gets here, today? No problem. My chair is on the charger-I will drag my sick ass down there, take it out get some BUD. Pills don't work for me. Bud works. End of story-whether RSDSA likes it or not, they can kiss whatever.
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| found on Google Image search 08/10/2012 |
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| on my back (c) 2012 |
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| slept on it wrong-bruised my hip over 5 hrs (c) 2012 |
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| another shot on my back (c) 2012 |
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| figure out where this was on your own (c) 2012 |
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| sores down to the coccyx (c) 2012 |
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| (c) 2012 |
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| You can, with the weight loss-see the crooked slant of the spine (c) 2012 |
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| medical photographs appearing such as this are subject to copyright 2012 |
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| (c) 2012 to JJC, patient & blog owner |
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| MRI is (c) 2012 to owner, JJC, myself-patient |
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| MRI is (c) 2012 to owner, JJC, myself-patient |
| MRI is (c) 2012 to owner, JJC, myself-patient |
| (c) 2012 to JJC, patient & blog owner |
On the chance that RSD/CRPS happens in the eyes, I have a couple questions:
1. How does one get it in an eyeball, and not get a corneal transplant, or just have the optic nerve (sensory) cut (same reason no one does sympathectomies anymore?), but as all she ever wants is drugs that get her high, I guess nerve blocks weren't a priority.
2. How do you tolerate the chlorine in a POOL?????
What Is Complex Regional Pain Syndrome (CRPS)? What Causes Complex Regional Pain Syndrome?
What Is Complex Regional Pain Syndrome (CRPS)? What Causes Complex Regional Pain Syndrome?
02 Apr 2010Complex regional pain syndrome, also known as CRPS is a rare, chronic (long-term) and progressive condition characterized by severe pain, inflammation and changes in the skin. Patients commonly describe the pain as a burning sensation, which affects one of the arms, legs, hands or feet.
CRPS used to be known as reflex sympathetic dystrophy - however, when possible causes of CRPS were later discovered, the name was changed.
Experts are not sure what the cause of CRPS is. We know that injury or surgery may have occurred before the onset of symptoms. However, in many cases no previous injury took place and there is no evidence of neurological or physical damage to the affected area.
According to the National Health Service (NHS), UK, and the International Association for the Study of Pain, there are two types of CRPS:
- CRPS Type 1 - used to be known as reflex sympathetic dystrophy, Sudeck's atrophy, reflex neurovascular dystrophy, or algoneurodystrophy. No damage has occurred. It is triggered by an apparent trivial injury, such as a fractured or sprained ankle.
- CRPS Type 2 - used to be known as causalgia. This is triggered by a more serious injury, such as a broken bone or some surgical operation. It may also be caused by a serious infection. In all cases there is clear evidence that nerve damage has occurred.
As the condition is very difficult to diagnose, it is not possible to make reliable estimates of the number of people affected. A significant number of patients never tell their GP (general practitioner, primary care physician) or doctor if their symptoms are mild. The National Health Service (NHS), UK, believes that approximately 1 in every 2,000 accidents or incidents of trauma probably result in CRPS. (The US counterpart, the RSDSA estimates that between 3-6 million Americans suffer from this disorder, many of them unnecessarily in silence).
Although CRPS can affect people of any age, first symptoms tend to become noticeable in patients aged between 40 and 60 years. Experts say that more females are affected than males.
The severity of symptoms and frequency of episodes of CRPS vary enormously. Some individuals have repeated CRPS episodes throughout their life, while others have symptoms which go away forever after a few months.
According to Medilexicon's medical dictionary:
- Complex regional pain syndrome type I is "diffuse persistent
pain usually in an extremity often associated with vasomotor
disturbances, trophic changes, and limitation or immobility of joints;
frequently follows some local injury."
What are the signs and symptoms of complex regional pain syndrome (CRPS)?
A symptom is something the patient senses and describes, while a sign is something other people, such as the doctor notice. For example, drowsiness may be a symptom while dilated pupils may be a sign.The predominant symptom of CRPS is pain:
- Pain - the pain is severe and continuous. Patients describe
it as a burning pain. Some have said it feels like a combination of
burning and electrical shocks. Part or all of a limb may be affected,
such as an arm, leg, hand or foot. The pain is triggered by an injury
and is much worse than one would expect. For example, a patient who
sprained an ankle may experience an unbearable burning sensation.
The affected limb, or part of the limb can become hypersensitive. If touched, bumped on, or exposed to temperature changes the pain can be severe.
If symptoms are severe there may eventually be muscle atrophy (wasting) in the affected limb. This is because the patient does not use the limb due of the pain.
- Changes in skin temperature - the skin may be sweaty on some occasions, and cold and clammy in others.
- Changes in skin color - there may be blotches or streaks on the skin. It may range in color from very pale to pink. Sometimes the affected area of skin may take on a blue tinge.
- Skin texture - the skin may sometimes seem thin and shiny.
- Nails and hair - hair and nails may grow at unusual speeds (too slow or too fast).
- Joints - the affected joint(s) may be painful, stiff and inflamed.
- Mobility - the patient may find it harder to move the affected limb or part of limb.
- Stage 1 of CRPS - typically lasts from 1 to 3 months. There is a severe, burning pain in one of the limbs. There may be muscle spasms (involuntary muscle contractions), joint stiffness and fast-growing hair and nails. Skin color and temperature may also change as blood vessels in the area are affected.
- Stage 2 of CRPS - usually lasts for 3 to 6 months. Pain in the affected limb, hand or foot may get worse, as may alterations in skin texture and color. Muscle tone may weaken. Inflammation and stiffness may worsen.
- Stage 3 of CRPS - changes that have occurred so far are usually irreversible at this stage. There will be significant loss of muscle tone in the affected limb, bones may have become contorted, while the joints have become stiffer. The patient will likely find it very hard to use the affected limb. Patients who receive prompt treatment for CRPS early on are very unlikely to ever reach this stage.
What are the causes of complex regional pain syndrome (CRPS)?
- Type 1 - occurs after an injury or illness that did not directly damage nerves in the affected area. Approximately 90% of CRPS cases are Type 1.
- Type 2 - follows an evident nerve injury.
Experts do not know exactly why such injuries or medical events trigger CRPS, even though the condition has been recognized by the medical profession for over 150 years. Specialists mostly agree that there is probably more than one single cause. Some argue that CRPS is a combination of different conditions with the same symptoms - they say it is not a single medical condition.
The psychological theory
Sigmund Freud, (1856-1939), an Austrian neurologist who founded the psychoanalytic school of psychiatry put forward the idea that CRPS might be mainly a psychological condition, caused by some unknown underlying psychological difficulty or trauma which make patients feel pain. As subsequent research has demonstrated that CRPS patients undergo real physical changes in their nervous system, this theory has been largely discarded. Other studies have shown that CRPS patients do not have a history of mental illness prior to the onset of symptoms.
Sympathetic nervous system malfunction theory
The sympathetic nervous system (SNS) is one of the 3 parts of the autonomic nervous system (that regulate heart rate, digestion, respiration rate, salivation, perspiration), along with the enteric and parasympathetic systems. The SNS's general action is to mobilize our body's resources under stress - to trigger the flight-or-fight response.
If we find ourselves in danger, for example, if a huge drunken man walks in your direction in a dark street at night, your sympathetic nervous system will start to accelerate your heart rate, breathing rate, blood pressure, as well as the level of certain hormones (adrenalin) - you are being prepared for a sudden, short-term release of energy, so that you can either fight better or run away faster (flight-or-fight response).
Some people believe that a physical injury, for example, may cause the SNS to release catecholamines. Catecholamines are 'fight-or-flight' hormones. Due to an unknown underlying problem, catecholamines are thought to activate pain receptors. Pain receptors are nerve endings which send pain signals to the brain (which makes you feel pain). They say that is why the post-injury pain experienced by CRPS patients is much greater than one would expect from that injury.
In other words, it is not the injury that causes the intense pain, but rather the way the body has responded to it.
The sympathetic nervous system has other functions too, such as regulating the blood vessels of the skin. A sympathetic nervous system malfunction might result in changes of skin color and temperature; one of the signs linked to CRPS.
Some cases of CRPS, however, have no evidence at all of any sympathetic nervous system malfunction.
Immune system malfunction theory
Some believe that Type 2 CRPS is caused by a problem with the immune system. When the body has an injury its immune system makes that area inflamed (swollen) as it attempts to stop infection from spreading. For some reason not yet known to us, theorists say, inflammation continues well after the injury has healed. The persistent inflammation irritates the nerves in that area, resulting in pain.
Diagnosing complex regional pain syndrome (CRPS)
There is no single test that can determine the presence of CRPS. Diagnosis is based on a physical exam, looking out for swollen joints, and changes to skin temperature and appearance, and the patient's medical history. The doctor may order the following diagnostic tests to help make a diagnosis:- Bone scan - a radioactive liquid is injected into a vein, allowing the bones to be viewed with a special camera. Increased circulation to the joints in the affected area may be detected.
- Sympathetic nervous system tests - the aim is to identify possible anomalies in the patient's sympathetic nervous system.
- Sweat test - the amount of sweat produced by the affected limb is compared to sweat production of the unaffected limb. If there is a big difference, the likelihood of CRPS is greater.
- Thermography - an infrared thermometer measures skin temperature of specific parts of the body, including the affected area. If skin temperature in the affected area is too high or too low, it could indicate CRPS.
- Electrodiagnostic testing - wires are attached to the skin and the electrical activity of nerves is measured. If readings are abnormal it could mean there is nerve damage, indicating possible presence of type 2 CRPS.
- X-ray - in later stages of CRPS, X-rays may detect levels of mineral loss in the bones. The doctor may order X-ray to rule out problems with joints and bones.
- MRI (magnetic resonance imaging) scan - an MRI machine uses a magnetic field and radio waves to create detailed images of the inside of the body. The doctor may order an MRI scan to rule out underlying problems with bones or tissue.
- Blood tests - these may be ordered to rule out underlying infection, or rheumatoid arthritis.
- A biopsy - a small sample of tissue from the affected area is removed and checked for cancerous cells.
- The patient has recently suffered an injury or some kind of trauma.
- There is persistent pain in a limb that is disproportionate to the original trauma or injury.
- Swelling and changes to skin temperature and appearance are evident.
- No other diagnosis could explain the signs and symptoms better than CRPS.
What are the treatment options for complex regional pain syndrome (CRPS)?
Treatment is most effective if carried out as soon as possible after the first signs and symptoms appear. In some cases even remission (total disappearance of signs and symptoms) is possible.CRPS treatment strategy is usually multi-disciplinary, with the use of different types of medications combined with specific physical therapies.
A multi-disciplinary approach (a number of different specialists):
- Neurologist - this is a doctor who is specialized in treating nervous system illnesses and conditions.
- Physical therapist - physical therapy is a branch of
rehabilitative health that uses specially targeted exercises and devices
to help people improve or regain their physical abilities. For CRPS
patients this may include regaining their range of movement and
coordination, as well as preventing muscle wastage and contortion of the
bones.
Physical therapy is the key factor in successfully treating CRPS.
Some patients may find physical therapy initially painful. Studies have shown that for those who persist with their physical therapy, symptoms of pain generally improve dramatically. - Occupational therapist - trained to evaluate patients with certain conditions and diseases, including CRPS, to determine the impact of their condition on activities and daily living. They can design and prescribe assistive devices which can help with the activities of daily living.
- Psychologist - the patient may require help in coping with living with a chronic, painful condition.
- Social worker - in most developed nations a social worker will provide the patient with information about services that are available.
- Pain relief specialist - this is generally a doctor with specialist training in relieving pain.
- NDSAIDs (nonsteroidal anti-inflammatory drugs) - OTC (over-the-counter, no prescription required) NSAIDs such as ibuprofen, naproxen sodium or aspirin may relieve pain and inflammation.
- Antidepressants - such as amitriptyline may be prescribed for neuropathic pain (pain caused by a damaged nerve). Should not be taken by those with a history of heart disease. Side effects may include drowsiness, dry mouth, blurred vision, constipation and problems urinating. Individuals who feel drowsy should not drive or operate heavy machinery.
- Anticonvulsants - these were originally designed for epilepsy treatment. However, they are also useful in treating nerve pain. Gabapentin is the most commonly prescribed anticonvulsant for CRPS. As side effects may include loss of coordination, drowsiness, dizziness and fatigue, patients may have to refrain from driving or operating heavy machinery.
- Corticosteroids - such as prednisone may reduce inflammation.
- Bone-loss medications - such as alendronate (Fosamax) and calcitonin (Miacalcin) may also be prescribed.
- Opioid medications (opiates) - Opioids (opiates) are a class of drugs that are commonly prescribed for their analgesic or pain-killing, properties. They include substances such as morphine, codeine, oxycodone, and methadone. Opioids are not suitable if the patient has a history of substance abuse or lung disease. Codeine and diamorphine can bring short-term pain relief in severe CRPS cases. Opiates should not be used long-term because of their potential side effects. Long-term use also carries a risk of addiction. Side effects may include drowsiness (improves) and constipation. Individuals who feel drowsy should not drive or operate heave machinery.
- Sympathetic nerve-blocking drugs - an anesthetic may be injected, blocking the nerve fibers in the affected nerves.
- Topical analgesics - topical means "applied onto the skin". Several types of creams, such a lidocaine, or a combination of ketamine, clonidine and amitriptyline may reduce hypersensitivity.
- Heat and cold therapy - sweating and inflammation may respond well to the application of cold. If the affected area is too cold, heat therapy may help.
- TENS (transcutaneous electrical nerve stimulation) - electrical impulses are applied to nerve endings, often providing pain relief.
- Spinal cord stimulation - tiny electrodes are inserted into the spinal cord. This is done by a doctor. Spinal cord stimulation can provide effective pain relief for many patients.
What are the possible complications of complex regional pain syndrome (CRPS)?
If complications do occur, they are nearly always because the condition remained untreated, or treatment started late.- Muscle atrophy (muscle withers) - if a limb is not used for any reason, which in this case would be pain, the muscles begin to waste.
- Contracture - the hand, fingers or foot, depending on which area is affected, may contract into a fixed position as the muscles gradually tighten.
- CRPS may spread - CRPS symptoms may spread to the opposite limb, hand or foot (mirror-image type), to a distant part of the body (independent type), or to a nearby site (continuity type).
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Wednesday, August 1, 2012
My PORT: a FB post and how I feel about the piece
What
does anyone know about getting ports removed in RSD? I had one put in
back in March-and I regret it, of course, because it spread my RSD
throughout my whole body. My face was spared until June: then an
emergency root canal-none of us were thinking about the length: it was a
front tooth: mine are a mess from this-this is the thing: I have had a
chest x-ray when they were trying to get blood from it earlier this
month, and it was just a 24 hour nightmare of a stay in a hospital-I
have not talked to a doctor or seen one since: I FEEL better! Mentally.
But I have decided that this "Port to Hell" as I have come to call it,
as it is useless to me, since I am not going back for any more nerve
blocks-nor do I want ketamine, I believe. I want my body to just have a
dang break. Period. Just to heal. Time to relax, if possible-life a
life as normally as I can-yes: I have been legally prescribed small
amounts of medical marijuana-I don't use it much, my lungs don't
tolerate that sort of thing, and $$$$$$ as it was looking at ketamine,
since six insurance denials. My cat can crawl on my chest: and it hurts
like crazy if her paw even touches it....big time!!! I react so bad to
it, she usually just jumps off and runs-I feel bad-and it's not why,
but I am tired of being dumped with meds, and stuff, I want some time.
What have the experiences been getting these tings removed in terms of
further complications? It feels almost like I am "rejecting it" if not
physically, I just for my mental health-want the thing out
2 people like this.
Thanks. My mental health was getting tenuous for a while-and here is how bad my RSD has overtaken my life; I have had so little time to take care of ME and even see the psychiatrist I see: about two months ago, I hit the wall-pain-wise, but also I just about snapped mentally from a life of doctpr visits--and told my PCP: I am wiped out. I live in the country now. Pretty, quiet, cool and very quiet. My pain levels haven't gone up-and I really want to cut it to just the essentials. If my stimulation is kept to minimum and I am...and mentally-it helps. My meds-quartered (I don't take any opiates, except one, and ONLY when I HAVE no options. And I have felt better since all the hospital visits have slowed to a trickle. TWO appointments in ONE month. My moratorium: you come to me. My psychiatrist is coming tomorrow. I am actually looking forward to seeing him--on my turf: and so he can see what this has done to me. I am 6'1 and my "medical care?" has dropped me to 140. Not healthy. The Schwanns guy is determined to fatten me up-and I finally feel like I want to let him--but like everything: in moderation!!! This thing is gonna come out-it probably wouldn't flush anymore anyhow. ThankI can't have it out just by getting it pulled-it's a procedure. A port is a tunnelled central line: it is beneath the skin. I hate it-it just reminds me of so many years of paralyzing pain: and a time when I wasn't coping with it well.
It hasn't even been flushed regularly: my PCP won't order the home health to do it because she "didn't order the port" and I think the PM doc expected I'd be doing exactly waht with it? Coming in for how many nerve blocks? Come on: when I lay in bed after the 4th, sick, in pain, and still miserable, I snapped a photo with my webcam: it captures it perfectly: "What next?" What are you going to do to make this any worse, for Pete's sake? I should dig that out. I look awful, and the only thing that holds me back? My nutritional state: is deplorable. I doubt that if Schwanns did not deliver I would ever make it to the kitchen or oh, maybe like EAT a few times a week. Back in April, I was recommended to have a feeding tube, and the doc mistook a pile of sagging skin (literally, and as nasty as it sounds) for subcutaneous fat. Back then I was like, "Help me find it, cuz I have been looking!" Today's meals? A popsicle and an Italian ice. First 2 decent meals in about all month. THAT is why I smoke a little (TINY bit-as the crap is outrageously $$$) but is the ONLY thing that has successfully stimulated my GI tract. Only narcotic is a PRN I take maybe a couple times a WEEK (if that), and so no-it is not gastroparesis; but there's other problems
Only thing that keeps me I guess, is that my nutrition is so very poor: I mean beyond "gain 20 pounds" if you know what I mean: I am quite underweight. Left to my own devices, I would eat only enough to get by: I doubt my PCP understands that, in fact, I KNOW she doesn't. I have lost almost 30 pounds between a hospital stay (Ugghhh!! Nightmare: avoid them!) in early April and one recently earlier in July. 20 pounds-and I was dumping in the high proteink high calories stuff I needed, careful balancing act of course, and whamo; one abscessed tooth. Antibiotics made me so nauseated that I coldn't keep the stuff down, and my weight, with THC or not is back in or not: so I leave it out-except when my pain is intolerable-and I mean wicked bad...But the hospitalist read a BS one-liner that some doc early on in my RSD days: said I would "infect myself" and vetoed the TPN or any enteral nutrition. But the tip is out of place on the port: so it's either leave it or find someone who knows crap about increased caloric needs when you have long term CP that is severe such as RSD:: which is a problem-and THE ONLY reason it is still in-but it won't draw blood, so I have to do something.











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