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period like cramps, can it be this cystocele? period like cramps, can it be this cystocele?

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Unread 05-08-2003, 12:20 PM
I do!

Gidge! I hope you are able to get in to see the doc and get this worked out soon! I don't want to sound like a broken record here, but that is EXACTLY the way my pain is/has been. I have been dx with MPS, FMS, and CFS. I don't know if that diagnosis is 100% on target or not. In my heart, I still feel that some of this is "female issues." I had an appt. with my GP yesterday but rescheduled it for next Tuesday because I was achy, grouchy, tired and not wanting to deal with him. My bp and weight are major issues with him and since I've gotten nowhere with them, I really didn't want to hear it.

Good luck to you (((sister))) and keep us posted!
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Unread 05-08-2003, 12:23 PM
period like cramps, can it be this cystocele?

Is FMS fibro?? So you get the aching/throbbing legs too? Are you super tired all the time? Wow someone else who feels like me what a relief!!!
Unread 05-08-2003, 04:39 PM
period like cramps, can it be this cystocele?

Sorry to hear the pain has increased Remember back in May 2000 when we started on The Road together w/ ((Lily)), ((Lisa-Momof1)) & ((KimM))..we all sufferred from terrible leg pain..The Muskateers ?!?

Look at what I found.... I've been looking back thru our *early post-op*'s been a long ride on a never-ending ROAD

posted by Momof1, Lisa:
I saw GYN yesterday for annual check-up, but needed to go anyway. Symptoms generally included severe lower back pain on right side, tugging sensation on both sides, tenderness in middle of abdomen and right side, horrible aching in my legs ALL THE TIME, GI symptoms, pain shooting down from my sides to the pelvic floor, etc. I saw GYN yesterday for annual check-up, but needed to go anyway. Symptoms generally included severe lower back pain on right side, tugging sensation on both sides, tenderness in middle of abdomen and right side, horrible aching in my legs ALL THE TIME, GI symptoms, pain shooting down from my sides to the pelvic floor, etc.

posted by Gidge:
Hey Lisa thanks for posting back, I'm 34 going on 80!!!
My symptoms starting getting worse at about 3mths post op too and have increased since......the aching legs is unbearable by the end of the day I have to lie down and wait for it to go away(pain meds and a couple of hours later) I have bad lower back pain and major cramping across my abdomen and down by my incision mostly on the right side......I guess since my ovaries are gone they won't consider endo returning but everything I read says it can....I'm going to do this bladder thing and if that doesn't work someone will have to listen to me about the endo......good luck to you and keep me posted on how you're doing thing that helps with the aching legs is elevating them you may want to give that a go, lets face it if you're as fed up as me you'll try anything right now

posted by Sheri:
Gidge or Lisa, Did your Docs say why the legs ache so much. Mine are like what you described Lisa and constant. I have never been diagnosed with Endo, I did have Adeno but thats just in the Uterus and thats been long My many Docs have never said what caused the legs aching. I've also been experiencing lots of swelling in hands,legs and feet do either of you have this?
Gidge, Maybe after you have this done on your Bladder and it doesnt help with the pain they will start to look more closely at what is going on in you Pelvic region like Endo or Adhesions. I wish only the best for each of you and hope that all this pain will finally come to an end. Take care

posted by Gidge:
Sheri, all they have ever said about the leg achiness is that it could be hormonal and that it usually isn't consistant with IC...........very vague isn't it?

I would give anything to know what causes it and make it go away it makes things like walking/grocery shopping etc very impossible, I"m only 34 and have to lie down after these types of activities which I think is pathetic

posted by Gidge:
when I had symptoms like this pre-hyst they said that I have some varicosity's in the blood vessels in my uterus and that was what gave me the heavy "crampy" feeling at the end of the day......I'm assuming that when they took out my uterus we took out the varicosities but tell me dear sisters and hostesses is this true? I know that from the operative report that some ligaments are left behind what about blood vessels, maybe I"m still dealing with a "congestion" and vessel problem???

post from 2000 on *leg & back* pain
Gidge did you ever pursue this any further back then? "congestion" and vessel problem

Big ((hugs))....

FMS is Fibro..hurt all over, extreme fatigue is a list of symptoms:
Defining characteristics of fibromyalgia:

Fibromyalgia is a fairly common—although difficult to understand—syndrome. It is characterized by scattered musculoskeletal pain (involving the muscles and bone structure), tenderness in specific areas, generalized fatigue and a feeling of being tired after sleeping. Fibromyalgia is most common in relatively young, otherwise healthy-appearing individuals, and occurs much more often in women than in men. It is estimated that fibromyalgia affects up to six million people in the US. In fact, fibromyalgia is the third most common diagnosis made in rheumatology clinics, after rheumatoid arthritis and osteoarthritis (in Wolfe et al, 1983, 14.6% of patients were diagnosed with fibromyalgia).The condition is especially enigmatic and difficult to identify. Routine physical examination and diagnostic studies are seemingly unrevealing. Yet the frequency and consistency in which fibromyalgia is encountered in clinical practice has given a new interest to an old but elusive complex.The natural history of fibromyalgia has yet to be definitively described. While it is not degenerative or life threatening, it can be life altering. As demonstrated by the following research, it is apparent that fibromyalgia is a chronic condition, with potential for significant periods or remission.
One study found that the average time from onset to diagnosis was 5 to 8 years, showing that the condition is chronic.
A 3-year study of 39 fibromyalgia patients showed that the most common response from year to year was "no change" in their condition.
In another study of 81 fibromyalgia patients, it was found that the condition lasted for an average of nearly 13 years. Additionally, remissions of at least two months were reported in 23% and repeat remissions in 6%. The average remission was 34 months long, with a median of 12 months and a maximum of 20 years. While many aspects of fibromyalgia are not yet clear, there has been a reasonable amount of progress in defining and understanding the syndrome. To help provide a better understanding of fibromyalgia, this article includes:

An overview of the Conceptual evolution:

Until recently, the lack of a unifying etiology (the study of the causes and origins of the condition), and the lack of an accepted terminology, has hindered the understanding and recognition of fibromyalgia. Over the years, fibromyalgia has undergone a "conceptual evolution" .Descriptions of fibromyalgia can be found dating back to the early 1800’s. In 1904, pathologist Ralph Stockman first reported evidence of inflammatory changes in the fibrous, intra-muscular septa (a thin membrane that divides two soft masses of tissue) on biopsies from patients. .Finally, in 1990, the American College of Rheumatology established firm criteria for the classification and diagnosis of fibromyalgia.

Recently, there have been a number of useful clinical studies to understand the profile of fibromyalgia patients. In a 1986 study that compared fibromyalgia patients with a control group, fibromyalgia patients were found to be in general better educated, wealthier, and more likely to be married. Additionally, they had greater use of the health care system, averaging 13 health care visits per year and 3 to 4 times the number of lifetime hospitalizations .The average fibromyalgia patient profile comprises:

Gender – 80% to 90% female
Average age – approximately 45 years old
Average time from onset to diagnosis – 5 to 8 years
The incidence of fibromyalgia patients has not been found to be different between ethnic groups.
At least one study has suggested a possible autosomal (chromosome) dominant inheritance pattern to fibromyalgia.

The "pain" is typically widespread or generalized and often axial (such as low back pain). It is interpreted to be deep and muscular in origin and the patient may also report subjective weakness.

Approximately 25% of patients report "poor circulation" or numbness and tingling which is not in a radicular pattern and typically involves arms and hands. However, a physical examination reveals normal muscle strength and sensory testing, with no inflammatory or arthritic features.

Stiffness is also a reported and is generally widespread and diffuse. As in other rheumatic diseases, the stiffness is typically worse in the morning, may improve as the day progresses, but is exacerbated the day after physical exertion or exercise. Unlike some rheumatic diseases, however, the pain seldom limits one's ability to get out of bed.

Fatigue is often the problem that the patient first describes to the physician. It may be interpreted as a lack of physical endurance or a dearth of psychic energy or initiation. The patient may experience short periods of energy (such as for 24 to 48 hours), only to rebound into feeling fatigued and tired again. While this symptom is common, it is not universal.

Non-restorative sleep:
Fibromyalgia patients typically wake up in the morning feeling tired. While this symptom is rarely offered as a complaint by the patient, it is often readily acknowledged upon questioning (e.g. "Do you feel refreshed upon awakening?"). Again, while this symptom is common, it is not universal. Modulating factors
All of these symptoms are further highlighted by typical modulating factors. Fibromyalgia patients generally note exacerbation with some or all of the following factors:

  • Cold, damp weather
    Overexertion~ The reverse is also true – patients feel better with warm weather, hot baths, or even vacations from home or work. Almost all patients have tried a variety of non-steroidal anti-inflammatory medications (NSAID’s), but without benefit. In a study of 50 matched controls, certain associated conditions were found to be unusually common for fibromyalgia patients. This study showed that a relatively high percent of fibromyalgia patients also had:
    Anxiety disorders – 70%
    Irritable bowel syndrome (IBS) – 34%
    Migraine headaches – 22% Additionally, Raynaud’s syndrome, dysmenorrhea and irritable bladder were common findings.

Specific diagnosis of fibromyalgia:

American College of Rheumatology Diagnosis Criteria"The hallmark of the examination of a fibrositis patient is the lack of objective findings in relation to the plethora of symptoms. The only abnormal finding is the presence of numerous tender points".
In 1990, the American College of Rheumatology published their criteria for classification of fibromyalgia. The classification was based on a blinded, multi-center study of 558 age and sex matched consecutive patients. Eleven symptom variables (such as sleep disturbance, frequent headaches) and modulating factors (such as stress, weather changes) were studied.Two critical findings resulted from this study:
"Widespread pain"was present in 98% of fibromyalgia patients, compared with 69% of the control group. Widespread pain is defined as pain in the left and right side of the body, above and below the waist, as well as axial skeletal pain (such as in the neck, front or back chest, low back).
Pain in 11 of 18 tender pointswas reported on digital palpation ("tender" is not considered "painful"). 88.4% of fibromyalgia patients had widespread pain (described above) in combination with pain in 11 of 18 tender points as described. The findings of morning stiffness (76%), fatigue (78%), and unrefreshing sleep (76%) is certainly suggestive of fibromyalgia syndrome. Yet these symptoms are common and non-specific. Moreover, only 56% of patients have all three. Instead, the diagnosis of fibromyalgia relies on the history of widespread pain (98%) and finding of discreet "tender points" on physical examination. Tender points are discreet areas of tenderness in the muscular and tendonous issue of fibromyalgia patients.The patient is typically not aware of these points and is often quite surprised at how a knowledgeable physician can readily pinpoint them. The tender points may be found by firm palpation with the thumb or first and second fingers. While the precise location of tender points is highly predictable and uniform, they are often not regionally related to the patient’s feeling of pain.
Tender points are found at very uniform and consistent sites in fibromyalgia patients. Over 40 paired sites have been identified. The nine most sensitive and specific paired sites are shown: The tenderness is detected by palpating these areas with a steady force using the fingers. Control sites are tested for comparison. Patients with fibromyalgia have localized tenderness at the uniform sites but are not diffusely sensitive to palpation elsewhere.Laboratory or radiographic tests are not used to help establish a diagnosis of fibromyalgia. However, since fibromyalgia can occur simultaneous with other disorders, or its symptoms can be mimicked by a variety of conditions, certain blood tests may be in order. These tests will help rule out conditions such as inflammatory rheumatic disease, hypothyroidism, anemia or endocrinopathies.Invasive testing is seldom indicated, but a test to measure response to nerve stimulation (electromyography) or even muscle biopsy may at times be obtained if a patient has demonstrable weakness or if a disease of the muscle is suspected.

With the exception of tender points, the physical examination may be unrevealing because the patient’s symptoms are common and non-specific (e.g. fatigue).The diagnosis may be confused with other conditions, including myofascial syndrome, rheumatoid arthritis or osteoarthritis, among other conditions. An accurate diagnosis is critical because the treatments are very different.
A few similar conditions include:

Fibromyalgia is perhaps most commonly confused with myofascial pain syndrome. Myofascial pain syndrome is regional pain syndrome, characterized by palpable, "trigger points" that produce pain in a referred distribution.

Comprehensive approach:

The precise pathophysiologic basis of fibromyalgia has yet to be clearly and convincingly illustrated. Fibromyalgia is known to be a chronic disorder, which means that there is no "cure" for fibromyalgia. Instead, treatment involves a coordinated management program to alleviate the symptoms. The goals of a management program should include the following components:
Patient education:
The foundation of an effective fibromyalgia management program is perhaps patient education. A patient who is well educated about fibromyalgia can have a sense of control and improved ability to manage the condition, which in turn can substantially alleviate symptoms of fibromyalgia. First, patients should know that fibromyalgia is a common, non-progressive, non-deforming, and non-life threatening condition. Patients should be reassured that physical activity will not harm them and in fact can be helpful. Also, remissions can be expected from time to time (39). Modulating factors that may exacerbate or alleviate their symptoms should be identified and discussed. These may include:
Offending habits such as excessive caffeine, alcohol or nicotine intake should be addressed.
Facilitation of stress management techniques and counseling should be incorporated as appropriate.
Energy conservation techniques and work simplification principles should be employed under the direction of an occupational therapist, as appropriate.
Adjustments in the work or home environment (such as use of lumbar support in a chair) can facilitate maximum social and vocational abilities.

Unrefreshing or non-restorative sleep is reported in greater than 75% of fibromyalgia patients. One study reported abnormal stage 4 sleep patterns in fibromyalgia patients (33). Furthermore, clinically induced sleep deprivations can induce a fibromyalgia-like condition in normal adults. Therefore, much attention has focused on enhancing sleep, particularly stage 4 sleep, and promoting good sleep "hygiene" is essential.
Important sleep habits include:
  • Establishing a regular sleep/wake cycle
    Avoidance of caffeine, alcohol and other drugs that may inhibit good sleep
    Minimizing stress is important, and appropriate stress reduction strategies need to be incorporated
    When appropriate, medications to enhance sleep may be necessary (such as sedatives/hypnotics)
Fibromyalgia - 3 Things Patients Can Do For Themselves:
*Stress reduction:
*Reducing stress can help with muscle relaxation and improve non-Rapid Eye Movement (non-REM) sleep.

Inadequate sleep:
This type is felt to play a central role in promoting the symptoms of fibromyalgia. The response to stress differs from person to person. The reduction of stress in the treatment of fibromyalgia must be individualized for each patient. Stress reduction might include simple stress modification at home or work, biofeedback, relaxation tapes, psychological counseling, exercise activities such as yoga and/or support among family members, friends, and doctors. Sometimes, changes in environmental factors (such as noise, temperature, and weather exposure) can exacerbate the symptoms of fibromyalgia, and these factors need to be modified.

Aerobic activities that the muscles can work together with the methods above to greatly relieve the symptoms of fibromyalgia. Many experts on fibromyalgia feel that exercise works by promoting the non-REM sleep that is commonly deficient in patients with this illness. Low-impact aerobic exercises, such as swimming, cycling, walking, and stationary cross-country ski machines can be very effective. For patients who are unfamiliar with exercising options, a physical therapist can provide an ideal source of instruction. With any new exercise program, it is important to understand that a mild increase in aching in the first two weeks is expected. This increased aching is especially likely to occur when the patient has not been exercising and the muscles are deconditioned. Sometimes, applications of cold packs to sore muscles and tendons after exercising can help relieve muscle inflammation and soreness.
The big three methods above may be all a patient with fibromyalgia needs in order to regain optimal health. However, especially early on in treatment, it should also be understood that medications are available that can work with these methods to improve sleep, reduce pain, and relieve fatigue. Typically, these medications do not have major side effects and they may only be needed for temporary periods. The treatment of fibromyalgia, therefore, is often a classic blend of the efforts of the patient and the doctor who together can address the condition.
What is fibromyalgia?
Fibromyalgia is a chronic condition causing pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep awakening feeling tired, fatigue, anxiety, depression and disturbances in bowel function. Fibromyalgia was formerly known as fibrositis. While fibromyalgia is one of the most common diseases affecting the muscles, its cause is currently unknown. The painful tissues involved are not accompanied by tissue inflammation. Therefore, despite potentially disabling body pain, patients with fibromyalgia do not develop body damage or deformity. Fibromyalgia also does not cause damage to internal body organs. Therefore, fibromyalgia is different from many other rheumatic conditions rheumatoid arthritis, systemic lupus, and polymyositis In those diseases, tissue inflammation is the major cause of pain, stiffness and tenderness of the joints, tendons and muscles, and it can lead to joint deformity and damage to the internal organs or muscles.

What causes fibromyalgia?

The cause of fibromyalgia is not known. Patients experience pain in response to stimuli that are normally not perceived as painful. Researchers have found elevated levels of a nerve chemical signal, called substance P, and nerve growth factor in the spinal fluid of fibromyalgia patients. The brain nerve chemical serotonin is also relatively low in these patients. Also, patients with fibromyalgia have impaired non-Rapid-Eye-Movement, or non-REM, sleep phase (which likely explains the common feature of waking up fatigued and unrefreshed in these patients). The onset of fibromyalgia has been associated with psychological distress, trauma, and infection.

What are symptoms of fibromyalgia?

The universal symptom of fibromyalgia is pain. As mentioned earlier, the pain in fibromyalgia is not caused by tissue inflammation. Instead, these patients seem to have an increased sensitivity to many different sensory stimuli, and an unusually low pain threshold. Minor sensory stimuli that ordinarily would not cause pain in individuals can cause disabling pain in patients with fibromyalgia. The body pain of fibromyalgia can be aggravated by noise, weather change, and emotional stress. The pain of fibromyalgia is generally widespread, involving both sides of the body. Pain usually affects the neck, buttocks, shoulders, arms, the upper back, and the chest. "Tender points" are localized tender areas of the body that can bring on widespread pain and muscle spasm when touched. Tender points are commonly found around the elbows, shoulders, knees, hips, back of the head, and the sides of the breast bone.
Each patient with fibromyalgia is unique.
Any of the above symptoms can occur intermittently and in different combinations.
Since the symptoms of fibromyalgia are diverse and vary among patients, treatment programs must be individualized for each patient. Treatment programs are most effective when they combine patient education, stress reduction, regular exercise, and medications. Recent studies have verified that the best outcome for each patient results from a combination of approaches that involves the patient in customization of the treatment plan.
Hope this helps you understand FMS/Fibro better...((hugs))
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Unread 05-08-2003, 04:50 PM
PS~Check out this syndrome:(

PPOD Syndrome:

  • Pelvic pain
    Bladder dysfunction
    Bowel dysfunction
    Rectal Frequency
    Loss of vesical sensory perception
    Excessive flatus
    Anal sphincter spasm
    Loss of rectal sensory perception
    Spontaneous bowel discharge
    Vaginal discharge
    Vaginal spotting
    Painful/Irregular menstruation
    Menstrual migraine
    Decreased genital sensitivity
    Decrease or loss of orgasm
    Genital Pain/Paresthesias
    Pelvic pain on orgasm
    Deficient (pre)coital lubrication
    Depressed libido
Frequently, PPOD patients have been given multiple diagnoses representing a number of "abnormalities" that are felt to be responsible for the production of their wide range of symptoms. These diagnoses are usually based on the identification of (or in some cases lack of ability to identify) some type of pelvic "abnormality", which in many instances reflects nothing more than a normal variant of questionable significance detected on diagnostic examination. Once detected however, these "abnormalities" are typically viewed as the cause of the patient's complaints and carry the implication that to resolve the associated symptoms, treatment must be directed at correcting the local pelvic "disorder" felt to be responsible for these complaints. What is not readily appreciated however, is that in the majority of these cases (PPOD Syndrome), these "diagnoses" represent nothing more than symptomatic descriptors of the individuals present complaints or symptoms, and, do not indicate or identify the etiologic or causative factor underlying the production of their complaints. As a result, many PPOD patients strain under the psychological burdened associated with having been given multiple diagnoses, when in reality, their "disorders" represent the varying clinical manifestations of a common underlying mechanical disorder of the spine.

Chronic Pelvic Pain Syndrome, Levator Ani Syndrome and Vulvodynia, etc. are "diagnoses" that exemplify this point. These are terms that indicate the presence of pain at some location in the pelvis. These terms however, do not identify or implicate the underlying factor or mechanism producing the pain. While on the surface this realization may seem little more than an academic point, its significance is much greater than that. As without knowing the true cause of a given complaint, any attempt at treatment (whether medical or surgical) can only be directed at trying to suppress the symptom rather than eliminate or correct its true underlying cause.

As a result, many PPOD patients reveal a history of having undergone one diagnostic and/or therapeutic procedure after another, only to be left with continued persistent pain. Unfortunately however, usually, only after all therapeutic options have been exhausted, and all "abnormalities" have been "successfully" treated, they are then told that there is nothing further wrong (as all of the identified "abnormalities" have been addressed) and, nothing more can be done. While this is an extremely painful, expensive and frustrating experience to endure for one symptom alone (chronic pelvic pain), it is nothing short of devastating for patients who repeatedly undergo this exercise in a search to identify the cause of, and, treat multiple PPOD related complaints Table 2 below, lists some of the commonly encountered symptomatic diagnoses that are routinely found in mechanically induced PPOD patients.

  • Chronic Pelvic Pain
    Levator Ani Syndrome
    Pelvic Floor Myalgia
    Pudendal Neuralgia
    Pelvic Congestion Syndrome
    Pelvic/Ovarian Vein Varicosities
    Proctalgia (Fugax)
    Fibromyalgia/Myofascial Pain Syndrome
    Trigger Points
    (stress, urge, mixed, neurogenic, overflow)
    Interstitial Cystitis
    Urinary Retention
    Non-bacterial cystitis
    Irritable Bowel Syndrome
    Colonic Inertia
    (rectal, anal)
    Chronic Constipation
    Anorgasmy Frigidity

Because there is no one single test that can diagnose the individual suffering from the mechanically induced PPOD Syndrome, a helpful means of potentially identifying individuals with this disorder...
Unread 05-08-2003, 04:58 PM
period like cramps, can it be this cystocele?

Oh Sheri, I don't know whether to laugh or cry.....that we can be this far out from then and still having the same problems....the weird thing is this leg achy thing comes and goes....isn't constant.......there have been periods where it's gone completely and then whamo it's back.......?

I also have pain in my ankles, knees, hips, wrists and strangely enough my collar bone....I did breeze through that info you posted and will have to look at it more closely from home but the one weird thing about my joint pain is it's always on both sides and I don't know if that means anything or not? The extreme tiredness is just not going away either and I feel like I've been run over by a truck when I get up in the .am......more tired then I went to be for sure!!

I did ask at one point about the varicosities and they just sorta got this glazed over look their face and said "oh I would imagine that got taken care of when they took your ovaries" but if they didn't remove all the effected vessels......would it have???

thanks for all the info Sheri, you are always so prepared......and always there, thanks sister for always being there when we have all needed you over the years!!! 's!!!
Unread 05-08-2003, 05:05 PM
period like cramps, can it be this cystocele?

I'll have to check out this PPOD thing tomorrow am just taking off......sounds like an awful lot of us around here though doesn't it??? Thanks again!
Unread 05-08-2003, 05:46 PM
period like cramps, can it be this cystocele?

Your very welcome ((gidge)) Thank you too for always being there I have tons of info on Hysterectomy outcomes/relationships to these type of syndromes..just holler when/if you want to read some more
Unread 05-08-2003, 05:48 PM

I have already vowed to myself that if I have these type of issues down the road, I am going to the Mayo Clinic no matter what it costs bcz I want to get answers and fixed.. I feel for all of you. I am 3 mo post op and going in for 2nd opinion tomorrow for some minor pain/ hope I just need more healing time.. goodluck and prayers!!!! cfo
Unread 05-09-2003, 09:35 AM
period like cramps, can it be this cystocele?

well I'm going to try my GP at the walk in again tonight and hopefully get in AND get him in a receptive mood to talk about these issues.....I just wonder why he's never thought of fibro before this has been going on so long.......?

I'm hoping he can make some suggestions where this cramping pain is concerned as well.....I swear to god it gets so bad you can almost think you're getting your period!!!

And I have some more reading to do around here over the weekend as well........definitely food for thought, thanks again girls!!! 's!!!
Unread 05-09-2003, 01:42 PM
period like cramps, can it be this cystocele?

IMHO, doctors are hesitant to DX fibro because there isn't a cure for it.

I will be keeping my fingers crossed for you tonight, (((Gidge))). I hope you will at least get headed in the direction of some answers.

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