Posted in aches, Arthritis, Chronic lower back pain, chronic pain, Coping with Chronic Pain, Fatigue, Fibromyalgia, Health Care, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis, Surgeries, U.S. Pain Foundation

DEA’s Latest Attempt to Punish Chronic Pain Patients

Now the DEA’s newest proposal targets drug manufacturers by giving them quotas as to the number of controlled substances they will be allowed to produce. Here we go again … another attempt to bully and force decreases in the manufacturing of pain medications – which hurt millions of Americans suffering with some form of chronic pain. But there is little empathy toward chronic pain patients suffering from back issues, hidden illnesses, and even surgeries.

And the number of patients who have been refused pain prescriptions for diagnoses they’ve lived with for decades continues to increase as will the suicides by these patients who can find no other form of relief. Following this is the comment I submitted to the DEA and I urge you to send your story to them ASAP. In the article, “DEA Wants to Target Drug Manufacturers in Opioid Supply, by Ed Coghlan and found in the National Pain Report dated April 21, 2018, click on the article title which will take you to the proposal docket  with instructions on submitting your comments. This is opened to the public until May 4th so please send your comments in today.  Thank you.

To Whom It May Concern:

I am pleading with you to cease, overthrow, and forget about the proposal to decrease the manufacturing of controlled substances, namely, opioids.

Scoliosis, Spinal Stenosis, herniated discs, and six fusion surgeries on my back due to Scoliosis have left my spine with 2 inches of bone-free fusions. It was decided not to fuse that area because of assumed increased complications. My back pain increased resulting in quitting my job and stop instructing, choreographing, and dancing line dances, restricted my love of gardening, house cleaning, and shopping due to the impact of pressure forced on those 2 inches of my spine.

Since July 2012 I have been on disability, spent the year of 2013 contemplating suicide and wallowing in a sea of depression as new health issues arose. Less than six months ago I was diagnosed with Restrictive Lung Disease and am now on oxygen 24/7 along with the myriad of medications to address my severe chronic back pain, restless leg syndrome, fibromyalgia, depression, and lack of sleep.

Taking Percocet at the dosage of 7.5/325 mg four times a day allows me to walk on the treadmill at 2.0 mph for 30 minutes (3-4 times weekly), dress myself, make the bed, and wash dishes. I go shopping with my husband at least once a week to get out of the house and unfortunately, we come right home after the first stop because the back pain will not allow me to spend an afternoon of shopping. I walk with a cane and sometimes ride in a wheelchair. And I’ve tried to dance a little bit for exercise but the oxygen tubing gets in my way.

If I didn’t take the Percocet four times a day my day would look like this: Wake up, go to the bathroom, sit back on the recliner with heating pad and moan in pain – and this is where I would spend my day. Activity increases my pain, therefore, physical activity is gone. Going out to shop is out of the question. Household chores including picking up items around the house, making the bed, or washing dishes is out of the question because the back pain travels down both legs and stirs up the RLS … forcing me to get back on the recliner. I’d get fat. I’d be depressed. And I’d be thinking of other options that would take away the misery of my painful life.

It was revealed that the CDC inflated the numbers of opioid suicides in its report per this article: (https://www.painnewsnetwork.org/stories/2018/3/21/cdc-admits-rx-opioid-deaths-significantly-inflated) And there have already been a few suicides by pain patients who were refused pain medication, leaving the patients with suicide as their only option to relieve their pain.

Controlling substance quotas isn’t going to remove suicides amount the citizens of this country – it is going to escalate suicides. For some reason people who do not live with chronic pain, believe it can be remedied with physical therapy, acupuncture, massage therapy – all great options, but they do not last. And they are expensive.

I cannot live a semi-normal life without Percocet. I’ve tried cutting down and find myself eventually taking the required number because the pain escalates quickly. How am I suppose to live? How am I suppose to enjoy visiting my son and his family including two grandchildren? How do I face a day without pain relief?

PLEASE, I BEG you to remove this proposed rule and reconsider your actions. This rule will escalate suicides, remove quality of life, and force pain patients to spend their days and nights in bed. Is this the society you are striving for?

Respectfully,

Carolyn Robinson

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Posted in aches, Arthritis, Chronic lower back pain, chronic pain, Fibromyalgia, Inflammation, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis

PART 5 – INJECTIONS, SURGERY IMPLANTS, AND MORE…OH MY!

Part 5A – Injections

 Good afternoon and thank you for stopping in to review Part 5A – Injections of the Relief Options for Chronic Pain series! This week’s information is familiar to me because I have had most of the injections discussed here, along with a Spinal Cord Stimulator implant. As I write I’ll be inputting my experience in italics.

Let’s start with the injections recommended by doctors as being an option other than opioid use. These are the injections most prescribed for chronic lower back pain as well as other chronic pain:

Epidural Steroid Injections                                 

Selective Nerve Root Blocks (SNRB)

Facet Joint Block                                              

RFA (Radiofrequency Ablation)               

Facet Rhizotomy                                              

Sacroiliac Joint Block

Trigger Point Injection                           

Nerve Block

There are other branches of injections that are extensions of these, but the above injections appear to be the ‘primary’ injections selected.

Epidural Steroid Injections (ESI):

These injections are prescribed as relief for chronic lower back pain and are injected in the lumbar section of the spine. However, Epidural Steroid Injections injected in the cervical (neck) and thoracic (mid spine) areas of the spine are very common. The consensus from most pain physicians is ESIs offer temporary relief spanning from one week to one year. And those patients reporting long-term relief are less credible.

(I was given this injection while living in Mt. Pleasant, SC thirteen years ago. Due to extreme lower back chronic pain I agreed to the injection with the hope it would alleviate the pain, and it did – for one year. Coupled with the injection I saw a physical therapist for six months but eventually the pain returned.) 

The use of fluoroscopy or X-ray assists the physician with placing the medication in pain and inflammation area. Earlier studies show that doctors did not use this method of determining the placement of the injection. A request for more studies has been issued even though most studies report 50% or more patients report pain relief with ESI. A word of warning – be sure to seek a professional with considerable experience directing injections with fluoroscopy for careful placement.

The attraction of ESIs is the medication is delivered directly into the pain source whereas oral pain medications have a less-focused contact with undesirable side effects. An ESI helps control inflammation (it has been determined chemical inflammation produces pain) and flushes out chemicals and inflammatory proteins from the area. ESIs are performed up to three times per year and usually given in sets of three. More detailed information regarding ESIs can be found here.

Selective Nerve Root Block (SNRB):

Used to diagnose the source of Nerve Root Pain and provide relief of low back or leg pain, a Selective Nerve Root Block (SNRB) is provided. A compressed or inflamed nerve root will produce back or leg pain. Because a MRI doesn’t show which nerve causes the pain, a SNRB assists in isolating the pain source. This may be used a treatment for pain management of a far lateral disc herniation (when a disc ruptures outside the spinal canal)

The nerve is approached where it exits the foramen (the hole between the vertebral bodies) with an injection of steroid (relieves inflammation) and lidocaine (numbing agent.) Fluoroscopy, which is a live x-ray, assists the professional in finding the specific area of pain. If the patient reports no pain, then it is surmised the injected nerve root was the source of pain.

Success depends upon whether the injection was administered to alleviate pain from a primary diagnosis or if the injections’ purpose is to confirm a diagnosis. SNRBs are limited to three times a year. And because of the difficulty of administering SNRBs, be sure to seek an experienced professional.

Facet Joint Block (FJB):

Paired joints, or facet joints, have side by side surfaces of cartilage (the tissue that cushions between the bones) and a surrounding capsule:

 

{illustration from Google search (innova-pain.com)}

 

Degeneration of cartilage with aging and injuries of twisting (dancing?) may cause damage to either one or both facet joints. A Facet Joint Block can alleviate the pain and/or confirm the specific source of back pain for patients. FJBs are like SNRBs and should be administered by an experience physician.

Nerve Block:

Used for pain treatment and management, nerve blocks are injections of medication into specific areas of the body. Various problems need diverse types of nerve blocks including:

  • Therapeutic nerve blocks used to treat painful conditions.
  • Diagnostic nerve blocks used to determine pain sources.
  • Prognostic nerve blocks predict the outcomes of given treatments.
  • Preemptive nerve blocks avoid successive pain from procedures causing problems.
  • Nerve blocks can be used to avoid surgery.

Note, however, if your pain isn’t related to pain in a single or group of nerves, nerve blocks may not work for you. Your physician will advise which nerve block is beneficial to you and your pain.

Radiofrequency Neurotomy for Facet and Sacroiliac Joint Pain

An injection procedure that is used to treat facet or sacroiliac joint pain caused by arthritis, other deteriorating changes, or from an injury is called a Radiofrequency Neurotomy. The goal of interrupting pain signals to the brain uses a heat lesion on certain nerves to eliminate pain. Radiofrequency ablation and radiofrequency neurotomy, used reciprocally, refer to a procedure that ruins the performance of the nerve using radiofrequency energy.

There are two primary types of radiofrequency ablation (RFA) 1- A medial branch neurotomy (ablation) affects the nerves carrying pain from the facet joints and 2- A lateral branch neurotomy (ablation) affects nerves that carry pain from the sacroiliac joints.[1]

Prior to the RFA a lateral branch or medial branch nerve block is usually performed to prove the patient’s pain is transmitted by those nerves. Additional injections including sacroiliac joint injection or facet joint injection along with other treatments may be requested prior to the RFA.

(I had the RFA as a last-ditch effort to find another form of pain relief prior to the implant of the Spinal Cord Stimulator. With hopes that the RFA would last at least one year (or minimal one month) I went through three different nerve blocks until the radiofrequency ablation was finally performed. Painful, stressful, and just downright annoying … I had the RFA which lasted three months to the day. Unfortunately, there’s no if, or, maybe that circles this procedure. Most insurance companies require all avenues be followed before going forward toward other pain treatment options.)

Facet Rhizotomy and Sacroiliac Joint Block Injections:

A Facet Rhizotomy injection is recommended if the patient has experienced satisfactory results from three Facet Block Injections. By disabling the sensory nerve that goes to the facet joint, long lasting pain relief is provided by the Facet Rhizotomy injection.

Sacroiliac Joint Block Injections (SI Joint) are used for diagnosing and treating pain associated with sacroiliac joint dysfunction. The SI Joint lies next to the spine connecting the sacrum (bottom of the spine) with the pelvis (hip).

Trigger Point Injections

Trigger Point Injections (TPIs) treat muscles that contain trigger points or knots of muscle formed because the muscles do not relax and are painful. In some cases, the knots can be felt under the skin. The nerves around the trigger points may become irritated and referred pain may develop. Pain felt in another part of the body is commonly known as ‘referred pain.’

Trigger point becomes inactive and the pain alleviates when the trigger point injection is provided. In most cases, a brief course of treatment results in sustained relief.

There are instances when physicians will prescribe only one injection for your pain. If your physician explains this is the course he follows, simply ask why? Why not three? In cases studied throughout the country it is stated that the ‘single-shot blocks’ do not give the patient’s pain the full recovery that a set of three shots gives. Many studies conclude that ‘single-shot blocks’ are of short duration and only add the patient’s increased need for narcotics.

In any case, injections, like many other forms of pain relief, are temporary. If you proceed into any course of treatment with expectations that your pain will be gone for good, stop. Chronic pain does not go away. The best we as pain patients can hope for is the ability to function within our daily lives with as little pain as possible. Believe me, I’ve tried just about everything and have found that a pain level of 4 sure beats the heck out of a level 10!

Next week, we explore the surgeries of implants and other forms of relief! Until then, have a wonderful week!

[1] www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain article

Posted in aches, Arthritis, chronic pain, Fatigue, Fibromyalgia, Inflammation, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis

Part 4 – Marijuana

Thank you for your patience with the delays in finishing the series, “Chronic Pain Relief Options.” Over the last months, I’ve endured a few setbacks healthwise and have finally found my voice again. I appreciate your support and hope you will continue to enjoy this series along with future posts for chronic pain sufferers.

As we continue our research into the different options available to patients suffering from chronic pain, Medical Marijuana is fast becoming one of the preferred forms of chronic pain relief by patients. However, regardless of the positive effects patients report from using Medical Marijuana, astigmatism continues to surround this natural drug.

This is, without a doubt, the hardest subject I’ve written about for many reasons. First, I know persons who use Medical Marijuana and respond with excellent results. Secondly, I know persons who are dead set against legalization, keeping marijuana from extensive research.

How does voting against the legalization of Medical Marijuana hinder research? On a federal level marijuana remains a Schedule 1 drug, regardless of its legality in 30 states including the District of Columbia and maintains the strictest category with criminal penalties. Therefore, if you live in a legalized state, you can be arrested on the federal level. However, we have a voice somewhere in this country and I believe if we open our minds to the positive outcomes of marijuana we may find a cure for the opioids issues we face today.

Without further ado, here is what I found.

What is Medical Marijuana?

The National Institute on Drug Abuse (NIDA) does not encourage Medical Marijuana use because of the lack of detailed data from research studies. It remains ‘unsafe for the public.’ To strengthen their decision, the FDA hasn’t approved Medical Marijuana as a viable medication.

The NIDA defines Medical Marijuana as “referring to the use of the whole, unprocessed marijuana plant or its basic extracts to treat symptoms of illness and other conditions.”

However, the NIDA recognizes the approval of two medications in pill form. Dronabinol and Nabilone, (a man-made form of marijuana) contain THC (delta-9-tetrahydrocannabinol) and treat nausea from chemotherapy as well as increase the appetites of AIDS patients. There is the possibility more medications may be developed once extended research is finished.

(Other countries approved a mouth spray containing THC (tetrahydrocannabidiol)and CBD (cannabidiol) – nabiximols (Sativex) – for muscle control problems related to MS. And for the possible treatment of epilepsy in children, testing of CBD-based liquid drug (Epidiolex) is in trials.)

WHOA…What is CBD & THC?

           The Harvard Health Publishing Blog cites CBD, (also known as cannabidiol) is the extract from the hemp plant and has very little if any intoxicating properties. THC, tetrahydrocannabinol, is the chemical that causes the ‘high’ when using Marijuana. Patients reported no change in consciousness and instead reported many benefits when using Medical Marijuana. Strains with little or no THC are listed as CBD-dominant strains and studies show that patients report little change in consciousness. Benefits reported from patients using CBD include relief from insomnia, anxiety, spasticity, and pain.  However, there are more than 100 active components within the marijuana plant. Testing is needed before informing the public of the different strains and benefits and/or effects of marijuana use.

Frustration from scientific groups is heightened because of the inability to perform thorough research due to the Federal government’s marijuana restrictions. If research groups are unable to obtain marijuana, then how are they expected to perform tests to relay results to the public? Perhaps that’s the real deal. If research studies are stymied from researching marijuana then it remains a threat to the public, thus the government’s agenda??

A couple of days ago I received an email from The National Pain Report citing a proposal that would add “intractable pain” to the approved conditions list for medical cannabis was appealed by the Illinois Department of Health. The Director of the Health Department claimed there ‘wasn’t enough high-quality data from clinical trials’ to add intractable pain to the approved conditions list.

Although there are several reports showing that ‘intractable pain’ is on the list. Those reports were viewed by the following states:

Government officials will continue to halt legalization until we as a people vote for legalization. This one simple act encourages further testing of different strains and helps patients make informed decisions when considering Medical Marijuana as a pain relief option.

Side Effects?

Fast becoming the ‘go-to’ method for relieving pain, Medical Marijuana’s ability to reduce pain, improve quality of life and reduce side effects of other medications has improved lives of many chronic pain sufferers. Numerous studies show patients on Medical Marijuana reduce opioid usage by 64% – dramatically diminishing the risks of overdose and dependency.

Surprisingly, the side effects of medical marijuana are like those of any medication – if you abuse it, you’re going to have side effects. Marijuana products derived from CBD are considered safe and are federally legal in the U.S. These products are commonly found as ‘oil products.’ Doses of up to 300 mg daily may be safe for up to six months per the Medical Marijuana Inc. website. Doses of 1200-1500 mg daily may be used safely for up to four weeks.

 

Health information site reports that lightheadedness, drowsiness, low blood pressure, and dry mouth are symptoms reported by some patients. Throughout my research, I did not find symptoms of moving to a stronger drug (heroin, cocaine) as a side effect of using Medical Marijuana. However, if you try other forms of marijuana not inclusive of Medical Marijuana, and you’ve never used marijuana before, then you may experience stronger effects. The key is moderation.

 

Please consider reading this with an open-mind, perform your own research and remember the probability Medical Marijuana is becoming an integral part of all our lives. Therefore, research and testing are necessary to ensure the safety of the public.

This post is derived from the results of my personal research and may not agree with your opinion of Medical Marijuana usage. I encourage everyone considering Medical Marijuana as a chronic pain reliever, to perform your own research asking the questions I haven’t answered in this post. Opinions are strong on both sides, but I think you’ll be surprised at the growing number of benefits for persons suffering from pain, MS, Crohns Disease and Parkinson’s Disease (to name a few medical diagnoses) reported by patients.

Stay tuned for PART 5 of the Chronic Pain Relief Options series – Injections and Surgeries!

 

Posted in Arthritis, Chronic lower back pain, chronic pain, Inflammation, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis

Options for Pain Relief

PART 2

Exploring Anticonvulsants, Muscle Relaxants, and Corticosteroids

In part one of this series of Options for Pain Relief, I wrote about NSAIDs, acetaminophen, and antidepressants. This post focuses on anticonvulsants (anti-seizure) medications, muscle relaxants, and corticosteroids. Because there is so much information regarding Opioids and Marijuana for treatment of chronic pain, I’ve decided to write two separate posts for each of these. The next post (Part 3) will be devoted to the pros, cons, and debates of Opioid use for chronic pain treatment.

Now, let’s discover how anticonvulsants, muscle relaxants, and corticosteroids are used as a relief for chronic pain.

ANTICONVULSANT (antiseizure) MEDICATIONS

Anticonvulsant medications are used for specific types of nerve pain (burning, shooting pain) and must be taken on a daily basis or as prescribed by your physician. Whether pain is experienced or not, this medication must be taken as directed for maximum results. This medication is not intended for an “as needed” dosage.

Some common side effects include sleepiness (which may improve the longer the medication is taken) and weight gain (one reason I stopped taking this medication), dizziness, and fatigue. If you suffer from kidney stones or glaucoma tell your doctor as anticonvulsants are not recommended for patients with these conditions. Newer anticonvulsant drugs do not require liver monitoring, however, if you have a kidney disease use caution when taking this medication.

Anticonvulsants are another example of a medication that is developed to treat one condition and is used to relieve the symptoms of an entirely different condition. Dual purpose anticonvulsants help patients manage their seizures while also helping chronic pain patients manage their pain. Studies provide conflicting views of treating chronic pain with anticonvulsants. Although there are studies advising other forms of treatment for chronic pain, other studies indicate that anticonvulsants are vital for managing chronic pain because of fewer long-term side effects.

Listed below are frequently prescribed Generic forms of anticonvulsants: (the brand name is noted in parenthesis)

  1. Gabapentin (Neurontin)*
  2. Carbamazepine (Tegretol)*
  3. Pregabalin (Lyrica)
  4. Phenytoin (Dilantin)
  5. Topiramate (Topomax)

*FDA approved the medication for treating chronic pain.

Many patients experience lower pain levels with anticonvulsants. Your doctor may use the trial-and-error method to find the drug form and dosage that treats your pain. Be sure to inform your doctor of side effects other than those he advised when taking anticonvulsants. Read the paperwork accompanying your medicine thoroughly, making note of any restrictions (no alcohol, etc.) while taking this medication.

*******

MUSCLE RELAXANTS

In the United States alone, an estimate of $100 Billion is spent annually for chronic pain management.  And among the numerous forms of chronic pain, one form is the Musculoskeletal pain. Its symptoms and discomfort are felt within the muscles, nerves, tendons, bones, and ligaments of the body. These symptoms may develop as an acute onset (rapidly and grow to severity quickly) or as chronic pain (slowly and long-lasting.) Like most chronic pain, Musculoskeletal pain that continues for three months or more is considered ‘chronic.’

Chronic musculoskeletal pain may be widespread or centered in one area of the body. Some of the more common parts of the body include lower back pain, myalgia (muscle pain), tendinitis, and stress fractures. The causes are as varied as the types of musculoskeletal pains – injury, overuse, poor posture, arthritis, and/or prolonged confinement.

To effectively treat the symptoms of pain and discomfort muscle relaxant medications may be used. Unlike their name, muscle relaxant drugs don’t act on the muscles themselves. Instead, the impact of the effects center on the central and peripheral nervous system.

Reported symptoms treated with muscle relaxants include:

  1. Bone Pain (dull, deep, penetrating pain)
  2. Connective Tissue Pain (felt within tendons or ligaments)
  3. Muscle Pain (less intense than Bone Pain, but causes range from injury to tumor)
  4. Tunnel Syndromes (result from compression of nerves)
  5. Joint Pain (aching, stiffness, swelling or burning within a joint(s))
  6. Fibromyalgia (ligament, tendon, muscle pain)

The most commonly prescribed muscle relaxant medications are Baclofen, Carisoprodol, and Chlorzoxazone. All three work on the central nervous system, but each is prescribed for different pain problems. Baclofen is prescribed for muscle spasticity which occurs as a result of multiple sclerosis and spinal cord injuries. Carisoprodol is more commonly prescribed for the treatment of several musculoskeletal system disorders that cause acute pain. And Chlorzoxazone is typically prescribed for lower back pain and muscle spasms. Only one of these medications have received rare reports of acute liver injury. Chlorzoxazone use may be associated with liver injury, but, again these reports are rare.

However, two muscle relaxant drugs have been associated with causing acute liver damage (severe to fatal.) If you are prescribed either of these drugs, speak to your doctor extensively regarding this warning. The drugs are:

Dantroline (for chronic spasticity)   and

Tizanidine  (for acute symptoms of muscle spasms or chronic muscle spasticity)

The normal side effects of dizziness, drowsiness, and headaches accompany most of the drugs mentioned above. As with all medications prescribed or discussed in your doctor’s office, research the side effects online if your doctor fails to discuss them with you. It is your right to know exactly what you are putting into your body and the effects that may accompany those medications.

*******

CORTICOSTEROIDS

Administered in the form of a pill, a topical cream, or an injection, another class of anti-inflammatory drugs is Corticosteroids. As a stronger drug used to control severe swelling and pain, corticosteroids are prescribed for specific pain conditions. They were created to act like the natural steroids in your body. By altering the immune system, they control inflammation that causes decreased movement and pain in most joints and muscle tissues.

These drugs are periodically administered to treat cases of acute pain or flare-ups. Another common treatment is chronic swelling in the tendons and joints. To reduce pain and escalate joint and tissues flexibility, corticosteroids are used for the following conditions:

*Osteoarthritis

*Rheumatoid arthritis

*Synovitis

*Tendonitis

Common types of corticosteroids:

**Hydrocortisone

**Prednisone

**Methylprednisone

**Cortisone

And the possible side effects include:

-Headaches

-Nausea or vomiting

-Sleep problems

-Dizziness

-Changes in the skin (acne, redness, increased hair growth)

-Mental changes (anxiety, mood swings, depression

Again, let your doctor know of any extreme side effects including hands, feet, or face swelling, eye pain or other visual changes, a rash that will not disappear, new muscle pain/weakness, and/or tarry bowel movements.

Corticosteroids do work but injections are limited to a maximum number every six to twelve months each year. Pills are given in large increments and dwindle down to nothing in a matter of six to ten days. And topical creams are usually applied as needed or per your doctor’s orders. Be sure to talk extensively with your healthcare physician to understand the side effects and the likelihood you’ll receive pain relief with corticosteroids.

Next week I will post Part 3 of Options for Pain Relief – Opioids. Thank you for your patience and I hope you enjoy reading this information!

Carolyn

 

Posted in Arthritis, Chronic lower back pain, Coping with Chronic Pain, Fatigue, Fibromyalgia, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis

More Info About “Patients Like Me”

Good morning!

If you haven’t signed up for “Patients Like Me” this post will give you more in-depth information about this unique website. As a patient with chronic back pain, Fibromyalgia, and joint inflammation and pain I have found Patients Like Me (PLM) offers a way to track my daily symptoms, conditions, and treatments. Let me explain.

The goal of PLM is to help patients become involved in the care of their conditions – Fibromyalgia, chronic pain, Rheumatoid Arthritis, Lupus, Bipolar, or any health condition that involves symptoms that the patient may be dealing with. You (the patient) gives data to PLM and they (PLM) gets that data and processes it into information for You.

You (the patient) give data (your conditions, symptoms, treatments) to PLM and (PLM) gets your data, processing your information into “data points” These data points are combined with all the conditions, symptoms, and treatments of patients in their system. This information is then available for YOU to see and explore.

If you have chronic back pain you can look up how many patients have your chronic back pain, their symptoms of chronic back pain, what medications they take for chronic back pain, and how they cope.

  1. Click on CONDITIONS at the top of your dashboard
  2. If you have listed chronic back pain in the system you can find your condition from “My Conditions” at the right of the form. Or you can “look up” chronic back pain in the space provided.
  3. Type in Chronic Back Pain.
  4. You will find Chronic Idiopathic Back Pain which is pain that lasts for 3 months or more.
  5. Below Chronic Idiopathic Back Pain are an Overview of the patients in PLM by age, sex, and the start date of this condition.
  6. Look at the table on the left and you’ll find sections on “How it affects people,” “How people treat it,” and “Compare treatments.”
  7. Click on “how people treat it”
  8. As of the date of this post, there are 79 treatments for Chronic Idiopathic Back Pain listed by patients.
  9. You can shorten the list by the “Top 10 treatments”
  10. Click on Hydrocodone (for example) and you’ll find an overview of the drug. Below is a chart of the reported purpose and perceived effectiveness
  11. 1166 patients take Hydrocodone for pain. As you scan through the chart you’ll see the other conditions Hydrocodone is taken and how effective it is for patients

You can look up your conditions and symptoms in the same manner. This information may not seem relevant, but once you are able to compare the evaluations of other patients you find you aren’t alone is this battle to cope with your condition. You can even find info about how other patients take a medication, with food or without food.

Explore the site to see if it is the right fit for you. I’ve found it’s a great way to track my progress by submitting my daily info. Charts show me if a medication is working, how my symptoms change, and a detailed chart I can take to my next appointment with my pain management doctor.

I was amazed that she wanted the info to put in my chart. She found it interesting and a great tool for her to see how I progress. Take a moment to check out PLM. It might be a good fit for you or you may feel you just don’t have the time to submit your information. But look at it this way. If you submit your information you are contributing to PLM’s research and their commitment to sharing people’s information to clinical trials, the FDA, AstraZenaca, Takeda Pharmaceuticals, and M2GEN (cancer patients research team.)

Thanks for reading and let me know if you join PLM. I wish you a day with very little pain so you can enjoy doing the things you love to do!

Warmly,

Carolyn

 

Posted in Arthritis, Chronic lower back pain, Fatigue, Fibromyalgia, Health Care, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis

Patients Like Me

Hello, and I hope you are enjoying a low pain or pain-free day!

Finally, after weeks of inflammation and burning pain in all my joints, I have started on the generic brand of Celebrex! (I took this medication years ago when it first came on the market and then was taken off the market due to symptoms of heart problems in patients.) My PA explained Celebrex was doing a great job now and thought I would have good results with it. And she was right! Within 24 hours my inflammation was down and the pain level in my joints was as low as a 2 or 3. I believe it may be helping my lower back, where I have arthritis because my back pain level has been lower, also!

Isn’t it great when you try a medicine and it actually works? There are several medications I’m on that make me wonder if they are doing anything for me. My doctors usually answer that if I were off of the medicines I would see how they are helping me. And although I consider taking myself off those meds, I don’t believe I want to go through the process of getting back on them. So far now, I’ll stick to my medication list.

Today I want to introduce you to a great site I found called Patients Like Me. I came upon this website by accident. After reading the synopsis of PLM I decided to join and see what it could do for me. Bottom line…this is a great site for anyone with hidden illnesses and any illness that impairs you with pain, discomfort, or wishing you knew somebody with the same problems.

PLM claims over 500,000 patients with over 2700 conditions on the single mission of putting patients first! And when you join you’ll understand this statement more thoroughly. PatientsLikeMe is the brainchild of Jamie Heywood, whose brother, Stephen, age 29 was diagnosed with ALS in 1998. Together with brother, Ben, Jamie tried treating his brother’s symptoms and slowing the disease even though it progressed rapidly. Jamie and Ben realized that researching for information and answers to help their brother and his disease was time-consuming and difficult.

Along with another friend, Jeff Cole, the brothers initially launched PatientsLikeMe to connect ALS patients, but it quickly expanded, and in 2011, [they] opened the website to all patients and all conditions¹. Fortunately, for us, we have the opportunity to be a part of PLM and contribute to the research of our diseases while forming relationships with patients, listing our medications, taking forms to our doctor visits, and reporting our daily symptoms. All of these items contribute to the goal of PLM: “a free website where persons share their health data to track their progress, help others, and change medicine for good!²”

I’ve been a member since March of this year and have already met so many new friends through this wonderful site. Not only do you enter your medications for your own needs, but you learn how many PLM patients are on the same medication, encounter similar symptoms, and give advice on taking the medication and how they alleviate their symptoms.

Each day you receive an email asking “how are you feeling today?” PLM is not looking for sugar-coated answers to this question. You tell it like it is. Log in, mark the face you feel at the time you log in (Very Bad, Bad, Neutral, Good, Very Good) and then you can give an explanation of your feeling. This is optional but this piece of information gives you insight into other patients’ symptoms and how their pain is affected by the weather, stress, and frustration.

Because I don’t want to bore you, I’m going to stop for now. But in a couple of days, I’ll post a follow-up to this note with more information on PatientsLikeMe. If you join, please let me know so I can start following you! My username is CNRobin62 and I believe you can search for me and follow me. Then just send me a note that you joined per my blog post. We’ll chat and before you know it you’ll have an arsenal of like disease friends who understand your feelings and frustrations.

For now, enjoy the rest of your day and I hope you have a wonderful week ahead. Thank for reading and I look forward to our next meeting!

Hugs,

Carolyn

 

 

 

Posted in aches, Arthritis, chiropractor, chronic pain, Fatigue, Fibromyalgia, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis, Surgeries, U.S. Pain Foundation, Uncategorized

Chronic Pain is a Pain in the ***

Good morning!

So far nobody has found my blog post and I really haven’t shared it with anyone yet, but hoping the keywords will bring visitors sooner than later.

Chronic Pain is a Pain in the (fill in the blank on the title) or fill in YOUR Chronic Pain area! It’s in your lower back, upper back, travels down your legs, is in your legs, your feet, your hands, shoulders, neck, head…you name it and most people will share the same pain you do.

So, what do you do about your Chronic Pain? We mentioned chiropractors, pain medicines, and therapy. But I have another option for you. There is a pain organization that helps almost every type of pain a person may have. It’s the U.S. Pain Foundation. If you go to the site (http://www.IntheFaceofPain.com) you will find a ton of information, resources, and help with your pain.

Write your story for them and they will send you information to help you in the form of resources, options for pain relief, and many more interesting and informative pamphlets for you, the pain sufferer. You’ll also receive a “Pain Warrior” bracelet to wear and let people know you are a Chronic Pain sufferer. Who knows, it may catch the attention of a fellow pain sufferer and you can share this information with them.

And if for some reason, you are not able to get on the computer to check out the website, but have a question, comment to me (below this post) and I will look up the answer for you. I joined the Advocacy Group for US Pain to help others with Chronic Pain find ways to deal with their pain every day. It would be my pleasure to help you or guide you to the right person for help.

It isn’t necessary to live with Chronic Pain all by yourself. You have people, support groups, and me, who will help you find a doctor for coping with pain. Plus I’ve thought of starting a Chronic Pain group to meet once a week or once a month so we can get to know each other and share our stories about pain and how we cope with it. You never know what other pain sufferers share that you will benefit from!

Those meetings will begin when it stays lighter in the evenings. I’m not crazy about driving in the dark and some of you may feel the same way. But keep a look out on my blog page for the date of the first meeting, place, and time. We may have several meetings in different locations so you wont’ have to drive so far.

I didn’t get to write my blog yesterday, but I hope you will check it out today. We are beginning a journey with fellow pain sufferers to stamp pain out and learn to live with it.

Until tomorrow, thanks for stopping by and I hope you have a “dry” day in the flood of water pouring down out there!

Take care,

Carolyn