Let’s Learn about D.I.S.H.

spine_general_DISH_intro01Forestier’s Disease is a rare form of degenerative arthritis. More commonly known as diffuse idiopathic skeletal hyperostosis (DISH), this disease attacks the ligaments of the body and turns them to bone.

The process is caused by the buildup of calcium salts in the ligaments and tendons, creating abnormal new bone growth (ossification). Doctors are unsure what causes this process to occur, but some suspect there is a genetic component. The hardening of the ligaments leads to joint stiffness and eventual loss of mobility.

DISH can occur in any part of the body, but most commonly affects the spine and lower back. Some people have DISH in their neck ligaments, which can make swallowing difficult. Other areas affected include the shoulders, elbows, ribs, knees, feet and ankles.

When it attacks the ligaments of the feet and ankles, DISH results in heel spurs, small sharp growths of bone that appear along the heel. DISH can be progressive. As it worsens, it can cause serious complications.

 

Causes of DISH

  • Sex. Men are more likely to develop DISH than women.
  • Age. DISH is most common in older adults, especially in people older than 50.
  • Diabetes and other conditions. People with type 2 diabetes might be more likely to develop DISH than are those who don’t have diabetes. Other conditions that can raise insulin levels in your body may also increase your risk, including hyperinsulinemia, prediabetes and obesity.
  • Certain medications. Long-term use of medications called retinoids, such as isotretinoin (Amnesteem, Claravis, others), which are used to treat skin conditions such as acne, can increase your risk.

Symptoms of DISH

DISH does not initially produce symptoms. As it progresses, you might experience:

  • pain and stiffness in your joints, especially in the morningSymptoms of DISH
  • loss of motion in your feet, lower back and other affected areas
  • inability to stretch fully
  • pain in your back, knee or heel
  • Loss of range of motion
  • Tingling, numbness, and/or weakness in the legs
  • Spinal fractures and increased risk of breaking other affected bones
  • Compressed or pinched nerves (radiculopathy)
  • Compressed spinal cord (myelopathy) which can lead to partial or complete paralysis of the legs and/or arms (paraparesis, tetraparesis)
  • Difficulty swallowing (dysphagia)
  • Hoarse voice or difficulty speaking (dysphonia)
  • Sleep apnea
  • Decreased lung capacity (if DISH affects the ribs)
  • Difficulty breathing possibly due to airway obstruction

You should always consult a doctor if you’re experiencing pain and stiffness or if you have bone spurs.

Complications

In most cases, DISH causes mild discomfort, allowing patients who have it to live with the symptoms through a combination of pain relievers, stretching exercises, other interventions and in rare cases, surgery to remove bone growth.

For others, the disease may continue to progress which can result in a complete loss of mobility in the affected joints. For instance, if you have DISH in your shoulder, it can make it difficult to raise your arm or move it in all its natural positions.

Fractures are a serious complication of DISH because the stiffness of your tendons makes your bones more likely to fracture if you’re injured.

One huge drawback with DISH is that the pain and stiffness can mimic many other conditions, so proper diagnosis and treatment is essential.

Diagnosis and Treatment

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An xray shows the skeletal changes of a DISH patient in the Thoracic Spine.

A diagnosis of diffuse idiopathic skeletal hyperostosis (DISH) is often suspected by the signs and symptoms a person has. X-rays can confirm the diagnosis. In some cases, a computed tomography (CT scan) and/or magnetic resonance imaging (MRI) may also be ordered to rule out other diseases that cause the same symptoms.  All three types of imaging studies may be used to see which other areas of the skeleton are affected by DISH.

There is no cure for DISH, but you can

  • Treat underlying conditions. If you have diabetes or another condition associated with insulin resistance, getting that condition under control will help minimize the symptoms of DISH. Maintaining a healthy weight will also help.
  • Get pain relief. Ask a podiatrist for pain relievers that can treat joint stiffness in your legs, feet, and ankles. Your doctor might prescribe corticosteroid injections for more severe pain.
  • Increase mobility. Gentle stretching exercises can keep your ligaments from becoming overly stiff and brittle. Ask your doctor to recommend a regimen for your joints that will keep them moving. Walking, bicycling, and Aqua exercises are all excellent ways to stay mobile.

My Personal Experience

I was diagnosed with DISH in 2014 after going to the Emergency Room for chest pain. After a number of tests were done, including a CT Scan, the doctor informed me that they had discovered I had DISH in my Thoracic Spine (after ruling out heart problems for the chest pain).

I had always had pain and stiffness in my spine but assumed it was “regular” arthritis, as I have Osteoarthritis throughout my body. Finding out it was something different came as a surprise to me. I discovered that because I have Diabetes Type 2, it was likely a contributing factor. In the years since the diagnosis, I have developed bone spurs in my left ankle, and the DISH has spread to include my Lumbar spine as well as the Thoracic spine. The bone spurs on my spine look more like melted candle wax than actual spurs which is typical for this disease.

I find the stiffness is the most difficult part of having DISH. The sensation is like trying to stretch, but never quite getting enough range of motion, so you’re left feeling “incomplete.” It’s almost like one good “pop” would make things better. I do stretching exercises and use a foam roller to help minimize the stiffness, and I’m conscious of my voice as well. I’ve developed some hoarseness over the years which could indicate that the DISH has affected my cervical spine.

I don’t take any additional medication for DISH with the exception of an occasional muscle relaxant if my back is particularly stiff. By relaxing the muscles around the spine, I get some relief from the stiffness that is part of DISH. I find that my stretching exercises are usually effective enough to bring relief. Heat sometimes helps with the stiffness as well, and a good muscle rub or magnesium rub can make a difference in pain levels as well.

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Conclusion

If you are experiencing pain and stiffness in the spine or noticing that you are developing bone spurs on your feet (or hands), consult with your doctor and ask about whether DISH could be causing your problems. X-rays and/or other imaging tests can help to determine if there are problems with the ligaments or if there is increased bone growth.

Discovering DISH early can help you get a treatment plan in place to provide relief. Although DISH is considered “rare”, it seems like it’s becoming more predominant than in the past so the sooner you get a diagnosis, the better.

Remember,

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Season of Miracles

Thoughts

As we enter the Season of Miracles, I wanted to write today about something that’s been on my heart. Joy and Miracles and hope for the future.

There is so much hope that comes with Christmas and Hanukkah – the Birth of the Christ Child, the Miracle of the Oil burning for 8 days – and I want us to see that despite Chronic Illness, there can still be joy and miracles and things to look forward to.

After living with Chronic Illness for over 30 years, my list of physical ailments is long and continues to grow. I also have a mental illness to deal with which will be with me for the rest of my life.

Having Bipolar Disorder was a frightening diagnosis for me, but after finally getting it under control with the proper medications, it’s become a real non-factor in my life and I often forget that I have it.

To me, that’s a miracle.

Each year though, my physical pain gets worse, and so does my Chronic Fatigue. I struggle more with pain management and all the side effects, but I’ve also learned new tips and tricks to help deal with my days – another reason to feel hopeful.

Making Changes

In a previous post, I wrote about complementary medicine and how it can help with Chronic Pain. I am a true believer in trying new solutions for old problems and had some great feedback about this article. I hope you were able to incorporate some of these ideas, or will look at the post to give them a try.

Living with Chronic Pain can be a bittersweet encounter – bitter because of the pain and side effects and all the negative changes in your life, but sweet because there are still things to be grateful for.

Research

There is new research on the horizon for diagnosing Fibromyalgia – the work being done to develop accurate blood testing has never been more exciting, and with science on our side, things are bound to have a positive impact in our lives.

The sooner we get a true diagnosis, the sooner treatment can start.

Treatments themselves are becoming better too, now that we understand that Fibromyalgia isn’t an autoimmune disorder and that its roots lie in the nervous system and the inability to communicate properly with the brain and spinal canal regarding pain signals.

Although there haven’t been any new medications released to treat Fibro, Gabapentin is being used more commonly in conjunction with the approved medications (Savella, Cymbalta and Lyrica) with good results.

More and more patients are becoming involved in Research for their health conditions, and Clinical Trials are being held across North America on a regular basis.

For more information about clinical trials, you can sign up here at ClinicalTrials.gov to see if you qualify for studies on a variety of health issues, not just Fibromyalgia. Another good spot to try is Patients At Heart. For Canadians, this link takes you to the Health Canada Clinical Trials website.

Advocacy

Another area where I’m seeing hope and miracles is in Patient Advocacy. This is a fast growing area where Patients become involved as authorities in their lived experience and work together with Health Care Partners to make changes in how health care is delivered.

One of the largest national organizations in Advocacy is WEGO Health. WEGO Health works with Patients in a wide variety of areas, offering opportunties to share you stories and help to impact change in a number of different ways.

They highlight a number of different annual conferences that take place in North America, and provide opportunities for you to share your story and get involved in various projects.

Patient Advocacy at an organizational level is becoming extremely important as well. If you want to be involved, simply contact the health organization of your choice, and ask them how you can become a Patient Advocate.

Volunteering your time to share your health story and help others is a great way to give back, beyond simply “making a donation”. Financial help is always needed and appreciated, but you can make a real difference as well in sharing your experiences.

Volunteering

Speaking of volunteering, this is an activity that has given me the greatest joy since becoming disabled. I do volunteer work for a group in BC, Canada called the Patient Voices Network, where I act as a Patient Advocate for a variety of Health Care initiatives.

I currently sit on 5 health-related committees,. Two are with the BC Emergency Medicine Network. Another is a Surgical Quality Improvement committee and another committee is devoted to ensuring Quality Control for all the Laboratories on Vancouver Island, BC.

Finally, I am a member of the Oversight & Advisory Committee for the Patient Voices Network, a role I’ve held for 3 years now. We oversee the activities of PVN and ensure that Patients are getting opportunities to share their voices in making change in health care.

I have also recently been working on becoming a Coach for PainBC.ca, allowing me to work directly with people with Chronic Pain and helping them find solutions for situations in their lives that they require some guidance with. I expect that work to start in 2020 when my training is complete in mid-December.

These volunteer opportunities allow me to give back to the community in a variety of ways while still taking care of my health. I devote approximately 20 hours a month to all of these committees which is manageable without overdoing it.

I love the variety of experiences I get to be involved in, the people I work with (surgeons, Government officials, other patients, etc.) and the opportunity to stretch my wings and try new things beyond my day to day life.

I’ve even been sponsored to travel to various conferences and to take courses such as the San’yas Indigenous Cultural Training.

I share this with you to show you that even if your health isn’t the greatest, you can still participate in volunteering in ways that make a difference.

Another volunteer suggestion is this: if you are a crafter, find out if your local hospital has need for knitted or crocheted items and take on the challenge. Blankets, baby items and more are often for sale in the Hospital Gift Shops and you can have a real impact on someone’s life with this kind of giving.

I know I’ve been very comforted in times in the hospital when I’ve been provided with a beautifully created blanket!

Season of Hope

I trust you are getting a sense of the hope and miracles I started this post with. There is so much potential in our lives even if we are disabled by pain and our physical and/or mental illnesses.

We must let go of the old ways of thinking that our good days are behind us, and start celebrating the wonderful things we have yet to accomplish.

Think about what you’re good at and find a way to incorporate it back into your life. What makes you smile? What makes your heart skip a beat? Find a way to bring that joy back into your life and see what changes.

Pain is easier to manage when you have good things to look forward to. Fatigue seems easier to handle when you’re active and busy, both mentally and physically.

I hope this post was helpful. I appreciate your comments below and look foward to sharing a magical Season with all of you! Remember…

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Why I Blog (About Fibromyalgia, Chronic Pain and Invisible Illness)

I have been blogging for a couple of years now and recently someone asked me “why do you blog? What do you get out of it?”

It was a good question, so I thought I’d write a post about my reasons for blogging and what I hope to achieve with this blog site

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Image by TeroVesalainen from Pixabay

Education

When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury. 

Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life. 

Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more. 

The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same. 

Compassion

Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert. 

In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.

My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood. 

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Image by Gerd Altmann from Pixabay

Volunteering

In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others. 

Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better. 

My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be. 

These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul. 

 

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Image by John Hain from Pixabay

Helping Myself

My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill. 

I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.

If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from. 

Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form. 

I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…

There Is Always Hope

How Myofascial Therapies Helped Relieve My Fibromyalgia Symptoms

Today’s post is from my dear friend Michelle at the Zebra Pit. She’s sharing information about Myofascial Therapies and how they relieve the symptoms of Fibromyalgia. Read on!

Tender_points_fibromyalgia_svg.svg

Fibromyalgia is a complex condition that often comes with a plethora of symptoms that can be confusing. Fibromites live with constant pain and for many even a gentle, caring pat on the hand can become unbearably painful.  Fibromyalgia is a common comorbid condition to many chronic illnesses, yet doctors often have no idea how to treat our many symptoms. Could it be the biggest culprit in our widespread pain and the formation of our tender points is a little known bit of connective tissue known as fascia.

Fascia and Myofascial Dysfunction

Thoracolumbar_fascia

Fascia is a network of thin connective tissue that runs throughout our bodies in bands and sheets. It is the tissue that helps keep everything in place and is comprised mostly of collagen. It wraps our organs, muscle and bone, creating dividing lines, holding the perfect position for our organs, while keeping our muscles and joints in proper alignment. Because fascia holds the body together and keeps everything in place, it is responsible for the body’s shape and form.

Just like tendons and ligaments, this connective soft tissue can become dysfunctional. Unlike these other soft tissues, the fascia is connected with the autonomic nervous system and some believe it to be a second, separate nervous and endocrine system, based on study findings. When myofascial tissues become dysfunctional, there are a number of things that can go wrong with the fascia, creating a scar tissue that is generally referred to as myofascial adhesions. This may be caused by mechanical or chemical failure or injury to the body.

The worse this dysfunction becomes, the greater the pain and number of myofascial adhesions. If you have myofascial adhesions, you can sometimes feel them as lumps when you run your hand firmly over your skin. Often, they are sore and painful even when using a light touch. These adhesions can also cause small fatty tumors to form. These fat deposits, along with the way fascia pull on the skin can dimple the skin, causing cellulite.

Myofascial dysfunction can be localized or widespread. If you develop tennis elbow (tendonitis), you might just develop myofascial adhesions around the injury. This is why you sometimes still experience pain even after an injury has healed. It could also grow and become widespread, as this interconnected network of tensile fibers tends to interact heavily. When fascia bunches up around one joint in order to protect it, it sometimes pulls other areas of our fascia out of alignment.

My myofascial problems ran from head to toe, causing awful tension headaches that also helped to feed my migraines, small fiber neuropathy throughout my hands and feet, 14 tender points with widespread pain and my fascia had become so tight that it was actually pulling some of my joints out of position. Neither my right hip nor shoulder would stay in place any longer.  Not only that, my myofascial tissue had grown so dense about my skull that it actually inhibited my natural hair growth and I feared I was going bald. I also had the “family curse” of cellulite and varicose veins on my arms and legs. I had regular TMJD pain and my hands were so tender, I couldn’t even knock on a door without bringing tears to my eyes. I also had tremors, it took twice the amount of time for me to go numb at the dentists, and I was constantly freezing, because my fascia were cutting off some of the blood flow and circulation to my skin.

How Myofascial Massage Helps

Fascia Head
In the 3 years I’ve been doing myofascial massage, I haven’t needed a pain medication stronger than toradol to treat my fibromyalgia pain. My head pain is at an all-time low despite suspected CCI and chiari. While my small fiber neuropathy isn’t completely gone at this point, it’s at an all time low and rarely causes issues. All of my joints function more normally and I spend a lot less time dealing with dislocations and subluxations. My hair and eyebrows are now thick and healthy. I rarely have problems with tremors anymore and even my POTS symptoms improved. I’m no longer quite so intolerant of heat or changes to the atmosphere. I have an abundance of hair and my eyebrows have grown in much thicker, too.

The traditional medicine model of pills and surgery offer poor solutions for these symptoms, but there are a number of myofascial treatments available that could improve your symptoms significantly. These therapies can be done in the comfort and privacy of your own home and there are several kinds of myofascial therapy you can have done professionally.

Each of these therapies work a little bit differently, but the long-term results are still largely the same. Each of these tools seeks to destroy any overgrown fascia and help to restore the myofascial lines to a healthy state. It is not always easy work. Some of the tools require a bit more oomph than others and the toxin release can be significant, as can the bruising. It’s worth it. The relief is greater than any of the drawbacks.

Today’s Options for Myofascial Therapy

fasciablaster

Ashley Black Guru has a number of myofascial tools which are very effective. Her videos and book are a great way to learn about how fascia functions, along with some great techniques. While it’s one of the most strenuous forms of myofascial massage, it’s still one I recommend highly. Since you have to put a little grit into it, it will help to build up stamina, strength and new muscle. This is essential to maintaining healthy joints and fascia as your body heals. Black’s methods and tools are highly effective and you can’t go wrong with her tools, though I recommend you go slow and be as gentle as possible. These tools are self-driven so you can control how hard and fast to go, how often to blast and find the best routine to suit your needs. If you need help choosing which tools are right for your specific issues, take a look at my FasciaBlaster Buying Guide.

Ultra Cavitat

An ultra cavitation machine is a handheld personal use version of ultrasound, which is used to help break up myofascial adhesions and release toxins, along with far infrared light to facilitate in healing. It’s deceptively simple to use, but very powerful. After only 4 sessions, my cellulite has decreased so dramatically, I don’t even recognize my own legs anymore. It’s amazing how something that seems so gentle can mold such terrain so dramatically. It’s also an easier, more leisurely tool to use. The pace of this tool is slow and provides a gentle touch, so there’s no pain involved.

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Cupping is another form of myofascial therapy you can opt for. In this therapy, bell like cups are applied to the skin and heat is used to create a vacuum within the cup. The suction helps to pull and release the overgrown fascia. I’ve heard good things about it from others with fibromyalgia and EDS. Cupping can be a passive form of self guided myofascial therapy, but you can also get this treatment done professionally.

Along with cupping, ASTYM is provided as a professional medical service. According to the website, ASTYM regenerates healing by eliminating scar tissue and helps to regenerate new, healthy tissue. The claim about this therapy is that it is very restorative and powerful, but they don’t share how they actually accomplish the therapy itself.

Ultra Cavitation can also be done professionally and may be more effective than self-use tools available on the market. The ultra cavitation is marketed as a tool for beauty, as it works well to create slimming, contouring and weightloss. In fact, all of these tools are marketed for their cosmetic benefits and I’ve certainly reaped my fair share of aesthetic benefits from using these tools. It isn’t my main concern, but it can be a good motivator. I’ve lost over 50 pounds while fasciablasting; a feat that seemed impossible for me due to lipedema. I’ve also really enjoyed the tightening effects on the only thing that reveals my age; my turkey neck.

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It’s also possible to have a massage therapist do your myofascial treatments utilizing your own FasciaBlaster. The number of MT’s using the fasciablaster is small but growing. Many who don’t know also seem quite willing to learn about it and you can really benefit from their knowedge and experience. The best blasting session I ever had was from a licensed MT.

Performing Myofascial Therapy Safely

With all the services and self-use tools available, it seems like there’s a myofascial therapy that’s right for almost everyone: However, it’s important to note that myofascial therapy isn’t for everyone. If you have a blood clotting disorder, take blood thinners or have a vascular disorder such as vEDS, you should not undergo myofascial therapy. Like all therapies, whether doing a self-use tool or seeing a professional, be sure to consult with your medical team to ensure it’s safe for you first. 

Safety should always be paramount when choosing a therapy for your health. Time to carefully research how to perform these treatments should be taken prior to beginning myofascial work. The risk of injury is greater if you don’t know what to watch out for and it’s easy to abuse such a tool, causing severe bruising, fatigue, toxic overload, injury or other problems. These tools need to be used only as recommended, for no longer than the specified time stated for each tool.

People with fibromyalgia and other health problems need to take these therapies very slowly. It is not unlikely that myofascial therapy will be a bit of a shock to the system, so it’s essential to ease your way in. It is possible to make yourself very sick from detox and overdoing it, causing fatigue and even a flare up in your conditions. To avoid this, start slowly and use these tools more gently than recommended. For pacing, I recommend people begin with one body part (a leg) or section (the abdominals) a day and work their way up to more based on tolerance. Take days off in between if your body is struggling with payback. To get more tips on safety and proper usage, take a look at 23 Tips for FasciaBlasting with EDS and Fibromyalgia.

Myofascial therapy may not be for everyone, but for those of us suffering with the daily pain and other debilitating symptoms of fibromyalgia, it can offer significant relief from our daily symptoms. It can even eliminate some of those terrible tender points which develop and are a criterion for diagnosis. As of today, I am down to only five; so few I no longer qualify for the diagnosis. Myofascial therapy may not address your every symptom, but since I’ve begun utilizing it, my life has been a lot more comfortable and I now enjoy many more symptom-free days.

Resources and Further Reading:

BIO:

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Michelle Curtis is a poet and writer with hEDS, POTS and MCAS. She is managing editor for the Zebra Pit where she writes about spoonie health and wellness, as well as art and culture. She has a BA in women, gender and sexuality studies from BGSU and an MFA in creative writing from NU. She lives in greater Cincinnati with her husband David and two Russian Blue cats. She thoroughly enjoys spending time with her family and friends. In her spare time she enjoys books, movies, art, music and the great outdoors (even when her MCAS doesn’t). 

New Blood Test May Prove Fibromyalgia Exists

For many years now, people with Fibromyalgia have been left in the dark when it comes to having a definitive test for the disease. The only reliable way to make a diagnosis currently is by listening to the patient’s description of symptoms and doing the standard 18 Trigger Point Test, in which you need to have 11 of the 18 tender points to qualify as having Fibromyalgia. 

I’ve written in the past about a company that has come up with what they claim is a blood test that shows Fibromyalgia, but although it’s been approved by the FDA in the USA, it hasn’t been backed by any of the major medical foundations or research hospitals. Now there’s a new research study out and it might prove to be on the right track. 

The research comes from Ohio State University and was reported in The Journal of Biological Chemistry. Here is what OSU is reporting about the study*:

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For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis.

In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success in identifying biomarkers of fibromyalgia and differentiating it from a handful of other related diseases.

The discovery could be an important turning point in the care of patients with a disease that is frequently misdiagnosed or undiagnosed, leaving them without proper care and advice on managing their chronic pain and fatigue, said lead researcher Kevin Hackshaw, an associate professor in Ohio State’s College of Medicine and a rheumatologist at the university’s Wexner Medical Center.

Identification of biomarkers of the disease – a “metabolic fingerprint” like that discovered in the new study – could also open up the possibility of targeted treatments, he said.

Doctor examining patient

Dr. Kevin Hackshaw examines fibromyalgia patient Barb Hartong at
The Ohio State University Wexner Medical Center.

 

To diagnose fibromyalgia, doctors now rely on patient-reported information about a multitude of symptoms and a physical evaluation of a patient’s pain, focusing on specific tender points, he said. But there’s no blood test – no clear-cut, easy-to-use tool to provide a quick answer.

“We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been,” Hackshaw said.

Though fibromyalgia is currently incurable and treatment is limited to exercise, education and antidepressants, accurate diagnosis has many benefits, Hackshaw said. Those include ruling out other diseases, confirming for patients that their symptoms are real and not imagined, and guiding doctors toward disease recognition and appropriate treatment.

“Most physicians nowadays don’t question whether fibromyalgia is real, but there are still sceptics out there,” Hackshaw said.

And many undiagnosed patients are prescribed opioids – strong, addictive painkillers that have not been shown to benefit people with the disease, he said.

“When you look at chronic pain clinics, about 40 per cent of patients on opioids meet the diagnostic criteria for fibromyalgia. Fibromyalgia often gets worse, and certainly doesn’t get better, with opioids.”

Hackshaw and co-author Luis Rodriguez-Saona, an expert in the advanced testing method used in the study, said the next step is a larger-scale clinical trial to determine if the success they saw in this research can be replicated.

The current study included 50 people with a fibromyalgia diagnosis, 29 with rheumatoid arthritis, 19 who have osteoarthritis and 23 with lupus.

We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been.

Dr. Kevin Hackshaw

Researchers examined blood samples from each participant using a technique called vibrational spectroscopy, which measures the energy level of molecules within the sample. Scientists in Rodriguez-Saona’s lab detected clear patterns that consistently set fibromyalgia patients’ blood sample results apart from those with other, similar disorders.

First, the researchers analyzed blood samples from participants whose disease status they knew so they could develop a baseline pattern for each diagnosis. Then, using two types of spectroscopy, they evaluated the rest of the samples blindly, without knowing the participants’ diagnoses, and accurately clustered every study participant into the appropriate disease category based on a molecular signature.

“These initial results are remarkable. If we can help speed diagnosis for these patients, their treatment will be better and they’ll likely have better outlooks. There’s nothing worse than being in a grey area where you don’t know what disease you have,” Rodriguez-Saona said.


Graduate student Didem Peren Aykas uses the experimental diagnostic tool, which measures metabolic activity in the blood, distinguishing fibromyalgia from other chronic pain conditions with near 100 per cent accuracy.
His lab mostly concerns itself with using the metabolic fingerprinting technology for food-related research, focusing on issues such as adulteration of milk and cooking oils and helping agriculture companies figure out which plants are best suited to fight disease.

The chance to partner with medical experts to help solve the problem of fibromyalgia misdiagnosis was exciting, said Rodriguez-Saona, a professor of food science and technology at Ohio State. 
Rodriguez-Saona said for the next study he’d like to examine 150 to 200 subjects per disease group to see if the findings of this research are replicable in a larger, more diverse population. Hackshaw said his goal is to have a test ready for widespread use within five years.

Fibromyalgia is the most common cause of chronic widespread pain in the United States, and disproportionately affects women. The U.S. Centers for Disease Control and Prevention estimates that about 2 per cent of the population – around 4 million adults – has fibromyalgia. Other organizations estimate even higher numbers.

About three in four people with fibromyalgia have not received an accurate diagnosis, according to previous research, and those who do know they have the disease waited for an average of five years between symptom onset and diagnosis. Common symptoms include pain and stiffness all over the body, fatigue, depression, anxiety, sleep problems, headaches and problems with thinking, memory and concentration.

Eventually, this work could lead to the identification of a particular protein or acid – or combination of molecules – that is linked to fibromyalgia, Rodriguez-Saona said.

“We can look back into some of these fingerprints and potentially identify some of the chemicals associated with the differences we are seeing,” he said.

In addition to identifying fibromyalgia, the researchers also found evidence that the metabolic fingerprinting technique has the potential to determine the severity of fibromyalgia in an individual patient.

“This could lead to better, more directed treatment for patients,” Hackshaw said.

Other Ohio State researchers involved with the study were Didem Aykas, Gregory Sigurdson, Marcal Plans Pujolras, Francesca Madiai, Lianbo Yu and Monica Giusti. Tony Buffington, formerly of Ohio State and now at the University of California, Davis, was also a co-author.

The research was supported in part by the Columbus Medical Research Foundation.

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These are exciting times to be in research for Fibromyalgia. Remember

There is always hope!

 

*Journal of Biological Chemistry