Health and Disability

I’m in pain all the time. Every single day I wake up and my pelvis is heavy, a giant, throbbing ache. No matter how I sit, or lay, or walk, or stretch, it feels like there’s a jagged rock hanging from the fibrous hinges inside of me, the ligaments overstretched, tearing with white-hot pain.

It twinges and stabs, it nauseates me and exhausts me. It’s been part of my life for five years. Five years. For five years I’ve been dragging it around with me, reluctantly having to introduce it as part of myself.

Like most chronic illnesses, Endometriosis doesn’t like to be lonely; women with Endometriosis are more likely to have an autoimmune disease.

Excruciating conditions like interstitial cystitis, bowel disorders and infertility may even be caused by Endometriosis.

I’ve long suspected an underlying autoimmune process in my case, as does my doctor, who thinks the root may be in my adrenals, Addison’s maybe.

As if the Endometriosis on its own wasn’t significant enough; especially with the new research that links the disease with increased risk of heart disease.

Something that I’m already genetically predestined for: my great-grandmother, her mother and her grandmother all died of heart disease at exactly 70 years old. 

A new study from the Indiana University School of Medicine and the Regenstrief Institute has found that person-centereddementia care, which involves both patients and their caregivers, can be effectively provided by an engaged low-cost workforce -- care coordinator assistants.

Under the close supervision of clinical professionals, the care coordinator assistants, known as CCAs, work as integral health care team members conducting home and phone visits with dementia patients and family caregivers. CCAs, who typically have at most two years of post-high school education, are selected through a rigorous and innovative screening process. Once hired and trained, CCAs are assigned tasks focused on patient engagement and caregiver support that require less training and expertise than that of nurses or social workers.

As the number of older adults increases and health care resources cannot keep pace, the question of how to provide good care for this growing population has become increasingly pressing.

"We have shown that with good management, supervision, and support, CCAs can be effective primary care extenders enabling many tasks important to providing best practice care for older adults to be "shifted" down," said social psychologist and Alzheimer's disease educator Mary Guerriero Austrom, Ph.D., who led the study. "The key is screening to select the right people -- people who are comfortable with older adults with cognitive issues -- and then teaching and training them [CCAs], and giving them the resources and support they need to do the job. If you take care of your people, they will do an excellent job of taking care of patients."

CCAs are the health care team's eyes and ears in the community and the homes where patients and their caregivers live.

Yesterday I had an appointment with a consultant who specialises in pain, it was not the first appointment and I have actually lost count of how many appointments I have had at the Pain Management clinic. However yesterday I was discharged from their care as there is nothing else that can be done to help me.

I have been having knee problems for over twenty years and for the past ten years those problems have caused disability and chronic pain, major surgery to try to repair the left knee was carried out and months of recovery followed, however a short time later and an accident at work damaged that knee and so it was suggested that I have a total knee replacement.

Unfortunately despite lots of physiotherapy and hydrotherapy, I was left in even more pain and even more disabled and it was then that the Orthopaedic team at Southend Hospital let me down.

Doctors are fixers, this is especially true when it comes to the Orthopaedic doctors, they are presented with patients who have anything from a simple wrist  fracture to someone who has multiple life threatening and complicated fractures and they actually do manage to fix what appears to be impossible to fix. The pain management team offer many ways to help people who are in need of help, Pain management courses, TENS machines, Spinal Cord Stimulation and of course medication.

However I am a problem, apparently I can’t be fixed and the symptoms, in this case pain can’t be masked with any of the options available and so therefore I end up sat in front of a consultant who hasn’t got a clue what to do and this must be so frustrating.

In my case the problem is that the knee replacement prosthesis  is clonking and whilst this can be quite common, in my case it triggers a massive spike of pain and so transferring to and from my wheelchair or just moving my leg to get more comfortable scares the hell out of me in case the knee clonks and I’m in even more pain.

I have offered a solution to a few orthopaedic consultants at Southend hospital, the solution for me is to amputate the leg above the knee and having no joint would eliminate the clonk and the pain that it gives me. Naturally these fixers who are used to spending hours upon hours in theatre fighting to save legs are horrified at the request, they have refused my request stating that “they swore to cause no harm” in their oath as a doctor. They also state that I will suffer extra nerve pain and more disability and so they wont amputate the leg.

What they don’t actually realise is that harm is being caused, I have lost six years sat here with a knee joint that they put in that is causing me pain every minute of the day. I have tried looking into what my rights are, how I can force them to help me. I don’t care about the extra disability, in fact I believe I would be less disabled as I would be free to move around without the fear of the joint clonking. Just yesterday I was in my wheelchair and I leant forward to kiss my daughter and that movement made the joint clonk, my poor daughter didn’t get a kiss, instead she got a torrent of swear words as the pain shot through my leg.

The primary difference between the two disorders is that pain is the primary symptom of people with fibromyalgia, while fatigue is the predominant complaint of people living with chronic fatigue syndrome.

Fibromyalgia pain is generally widespread and chronic. The fatigue that CFS sufferers experience is highly profound and can actually be totally crippling.

Chronic fatigue syndrome is often activated by an infectious illness and even sometimes after surgery or trauma. Fibromyalgia, however, is usually activated by a trauma, not as often by an infectious illness.

While it is mainly women who suffer from either disorder, women are more likely to have fibromyalgia at a 9 to 1 ratio than chronic fatigue syndrome at a 7 to 3 ratio.

Chronic fatigue syndrome and fibromyalgia are thought to be separate but related conditions. What they share is severe fatigue that disrupts the normal rhythm of day-to-day life.

The connection between fibromyalgia and chronic fatigue is so profound that some researchers say that if a fibromyalgia patient can improve their sleep, their fibromyalgia symptoms will get better. If you have fibromyalgia-related fatigue or think you have CFS, it makes sense to get screened for other causes of fatigue like thyroid issues or anemia.

While many people rely on sleeping pills to get some sleep at night, they are definitely not a long-term solution. And, if you area dealing with a chronic condition like fibromyalgia or CFS, you likely understand that you will need it more sustainable intervention.

The first thing that you should do if you are experiencing chronic fatigue syptoms is to be screened for sleep-deprivation issues like snoring or breathing problems.

Integrative medicine (IM) is coming of age in the U.S. military, with the first example of widespread implementation of an IM technique being the popular use of acupuncture to treat pain in combat settings. The successful integration of this IM technique, its use by military medical acupuncturists, and implications for introducing other IM programs in the future are examined in an Editorial published in The Journal of Alternative and Complementary Medicine, a peer-reviewed publication from Mary Ann Liebert, Inc., publishers. The article is available free on The Journal of Alternative and Complementary Medicine website until May 5, 2016.

The authors describe the U.S. military's implementation of the auricular Battlefield Acupuncture (BFA) technique in its Warrior Transition Unit clinics, which treat large numbers of soldiers injured in combat. They highlight the methods that contributed to the successful integration of BFA including strategies to introduce and encourage the use of acupuncture, administrative needs of the program, and data collection to assess outcomes. The model developed here and the lessons learned will be useful as the military explores additional IM techniques.

Chronic caregiving stress has also been associated with poorer physical health -- more pain, more disruptions from physical-health problems and lower overall health-related quality of life.

One powerful way to reduce their stress: social support. That's according to a new study published in Family Relations by researchers from Concordia University in Montreal.

And that support is essential as children -- and their parents -- age. It could also have important consequences for health costs.

For the study, psychology professors Jean-Philippe Gouin and Erin T. Barker, as well as their co-authors, investigated whether social support can protect against stress-induced immune problems.

They asked 56 healthy parents of children with ASD to complete questionnaires on formal social support (provided by health or social services professionals), informal social support (provided by significant others, friends and family) as well as self-rated health and recent somatic symptoms.

Study participants also provided blood samples to check for inflammation -- the automatic reaction of the innate immune system upon exposure to infection, injury or abnormal cells, or psychological stress. Chronic low-grade inflammation is also associated with greater risk for several age-related diseases, including cardiovascular disorders, diabetes, certain cancers, autoimmune diseases, frailty, dementia and early mortality.

The results indicated that greater informal social support was associated with lower inflammation, and that a higher number of formal support services received by the family was related to better self-rated health and lower inflammation.

Notably, the impact of support services on the parents' inflammation levels increased with the age of the affected child.

A pioneering technique significantly reduces phantom limb pain--chronic pain emanating from the site of amputated limbs--according to findings presented at the Society of Interventional Radiology's 2016 Annual Scientific Meeting.

The study indicates that interventional radiologists applying cryoablation therapy, a minimally invasive targeted treatment using cold blasts, show promise in improving the quality of life for patients suffering phantom limb pain.

"Until now, individuals with phantom limb pain have had few medical interventions available to them that resulted in significant reduction in their pain," said J. David Prologo, M.D., assistant professor in the division of interventional radiologyat Emory University School of Medicine. "Now, with the promise of cryoablation, these individuals have a viable treatment option to target this lingering side effect of amputation--a condition that was previously largely untreatable."

Military veterans wounded in combat and people with complex medical conditions, such as uncontrolled diabetes, constitute a significant part of the population affected by pain that seems to originate from the lost limb. Millions of people in the U.S. live with amputated limbs and, according to the Centers for Disease Control and Prevention, nearly 200,000 amputations occur each year.

The interventional radiology team at Emory University treated 20 patients, with each person undergoing image-guided cryoablation of the nerve and scar tissue in the residual limb (the part of the body that remains after an amputation has been performed). During cryoablation, a probe is precisely placed through the skin and the temperature is dropped for 25 minutes to create an ablation zone, shutting down nerve signals.

Researchers asked patients to rate their pain on a visual analog scale (VAS) that ranged from 1 (not painful) to 10 (extremely painful) before, seven days after and 45 days after the intervention. Before cryoablation, patients reported an average pain score of 6.4 points. By day 45, the average score was 2.4 points.

Last week, I asked the Internet whether it was important for them to view their electronic medical records. Almost 1,000 people voted, with a resounding 77% responding that they wanted access to their record "like yesterday."

It might seem obvious that patients voted to view documents that contain information about medical histories, immunization reports, doctors' annotations, diagnoses, and prescriptions. In some cases, accessing records has resulted in patients stepping in to to correct important medical errors or oversight, or avoiding duplicate testing.

But the results were a surprise to me. For years, I've heard from prominent groups in health care that most patients are fairly indifferent to their medical records. That view has even informed important policy decisions: As an example, in part due to pressure from physician groups, Centers for Medicare and Medicaid Services (CMS) implemented a rule change that made providers responsible for just one patient viewing, transmitting, and downloading their digital medical record in 2015 and 2016, down from than the previous 5%. That's not one per person—that's one total.

"The biggest issue in the pushback on CMS from groups like the American Medical Association and American Hospital Association was that providers shouldn’t be accountable to patient behavior, and that patients were often indifferent," says Arien Malec, a vice president at RelayHealth and former employee at ONC, the government agency responsible for coordinating the implementation of health IT. The AMA admits here that it urged CMS to make this "immediate improvement"; AHA has also pushed for a rollback of this rule on the grounds that physicians' performance shouldn't be "contingent on the actions of others."