Fibromyalgia Patients may benefit from Tocilizumab (Actemra)

Fibromyalgia Patients may benefit from Tocilizumab (Actemra)

That what an article published August 10, 2023, on HCP Live says.

Now, it’s important to note that fibromyalgia isn’t well understood. That can make it hard to treat because we don’t know what treatments get to the heart of the disease. Actemra is an interleukin-6 inhibitor, often used for Still’s Disease and some other rheumatologic conditions. But, as the article says:

Investigators reported a case series of patients with fibromyalgia receiving tocilizumab treatment. Symptoms were assessed using the revised Fibromyalgia Impact Questionnaire (FIQ), which evaluated pain levels, and the 2016 criteria of the American College of Rheumatology (ACR). Symptoms were compared using the Wilcoxon signed-rank test and neutrophiles from patients with fibromyalgia and matched controls were isolated for transcriptome analysis. Each patient underwent a 40-joint sonography at baseline, including the elbows, wrists, knees, ankles, metacarpophalangeal joints, and thumb interphalangeal joints.

The FIQ and general fibromyalgia symptoms improved at both 4 and 12 weeks with 4 (67%) patients achieving a pain reduction of ≥30% at the 4-week mark and 3 (50%) achieving the same pain reduction at the 12-week mark. No significant changes in joint inflammation, as assessed by the 40-joint sonography, was observed.

There were possible differentially expressed genes identified in primary patients when compared with controls after treatment with tocilizumab. Additionally, 2 genes upregulated in patients with fibromyalgia (C3ARI and PI3) when compared with matched health controls.

The full journal article is available open access, too, in case you’re interested. In it, the authors point out:

We presented a total of two primary and four secondary FM patients who had received subcutaneous tocilizumab for a minimum of 12 weeks. All patients had severe symptoms despite standard treatments. Patients’ FIQR and fibromyalgianess both dropped at 4 and 12 weeks. Four (67%) of them reached a pain reduction of ≥30% at 4 weeks, and three (50%) reached a pain reduction of ≥30% at 12 weeks. Possible differentially expressed genes were identified in primary FM patients when compared with controls and after tocilizumab treatment. Conclusions: FM patients likely benefited from subcutaneous tocilizumab therapy. A randomized controlled trial is needed to verify its efficacy.

Obviously, 6 participants is a super low number. This is something that will require more research, for both those with primary or secondary fibromyalgia. It’s also going to be important to study younger people than 36, the youngest person in this study. Aside from that individual, the next youngest person was 43.

One incredibly interesting thing they noted:

Tocilizumab has been approved to treat cytokine storms in COVID-19 patients []. It could be interesting to investigate how FM symptoms change in patients treated with tocilizumab due to COVID-19.

I agree that this would be an interesting idea — especially because we know from another recent post that MAS is the king of cytokine storms.

Do you have fibromyalgia? If so, would you be willing to try a biologic to see if it helped your symptoms?

Research Study on Cannabinoids for Californians with OA, RA, or Fibromyalgia

photo containing information in this post

Researchers from the University of Michigan are conducting a study on the efficacy of different cannabinoids (such as CBD and cannabis) in treating Fibromyalgia, Rheumatoid Arthritis, and Osteoarthritis and YOU have the opportunity to participate!

If you complete the study you may receive up to $500 in Amazon gift cards.

Again, this is for California residents only.

Learn more here!

The study sponsors are LEVEL and OvercomeEach participant will be in the study for 12 weeks. You can easily participate from the comfort and safety of your home using your smartphone. Again, this study is on the consumption of cannabinoids such as CBD and cannabis.

The study is limited and on a first-come, first-serve basis. To learn more and find out if you are eligible to participate, please visit releaf.at/umpain

Gamers gear up to raise £5,000 for Fibromyalgia Action UK this awareness month

The below is a press release from Fibromyalgia Action UK.

A couple of quick notes:

  1. I’ve added a few more links for some background info.
  2. There isn’t much information around the rates of fibromyalgia that occur in the transgender, nonbinary, and gender-diverse communities.
  3. Many providers treat fibromyalgia as a ‘garbage can’ diagnosis, AKA if they don’t know what’s wrong with you they may misdiagnose you with fibro if you have, say, Ehlers Danlos Syndrome (EDS) but they aren’t familiar with it and don’t know what to look or test for. Because of that, there is a wide range of experiences with fibro.

All that said, check out the below and see what you can do to help!

FMAUK Gaming for Good, a gaming charity fundraiser, will wrap up on the 12th of September, coinciding with the end of Fibromyalgia Awareness Week UK. The fundraiser aims to raise £5,000 for Fibromyalgia awareness charity, Fibromyalgia Action UK (FMAUK).

What is Fibromyalgia?

Fibromyalgia is a debilitating condition which is thought to impact 1 in 20 people in the UK. FMAUK aims to improve the lives of people with Fibromyalgia by increasing awareness of the condition throughout the UK and elsewhere, as well as improving the awareness of, and access to, treatments.

Fibromyalgia can bring unpleasant and life-changing symptoms, such as:

  • Fatigue and exhaustion
  • Widespread body pain
  • Non-refreshing sleep
  • Cognitive disturbances and confusion

People who suffer from fibromyalgia can find that it has a huge impact on their lives, and they may not be able to do things that they once did before developing the condition. For unknown reasons Fibromyalgia impacts women more than it does men. The women/men ratio is around 7:1.

There is no cure for Fibromyalgia. Treatment is focused on managing the symptoms of the condition and includes things such as pain killers, anti-depressants and anti-epileptic medications, Cognitive Behavioural Therapy and counselling.

Gaming for good

Gaming for Good is when individuals or teams raise money for good causes through playing video games. According to Third Sector, in the US, which is home to 178.7 million gamers, charitable fundraising has become an integral part of the gaming community. A livestreamed fundraiser run by GuardianCon, an annual gaming convention in Florida, raised $3.7m (£2.9m) for the St Jude Children’s Research Hospital before the convention even started.

Participants of the FMAUK Gaming for Good fundraiser have been invited to host their own gaming marathons or tournaments in September, encouraging friends and family to fundraise in teams, or alternatively, challenge themselves to a game for a set period of time.

Andrew Hardy, Gaming for Good fundraiser, comments:

“I chose to help FMA by raising money via Gaming for good as I find that gaming can really help distract me from pain. It’s something I believe can help many young people with fibromyalgia.

I will be raising money via Game streams on Twitch.tv as the website allows me to interact with people directly and I feel I can talk about Fibromyalgia and raise awareness and vital funds. I will keep supporting FMA UK via gaming and any other events I can do for as long as I am able to as I strongly believe that one day, we will find better treatments & a cure for Fibromyalgia.

If I can help people like myself get out of pain, then I have helped make the world a better place for Fibromyalgia sufferers. I will be dedicating my fundraiser to my mum, Lindsay, who inspires me every day to continue the fight against Fibromyalgia & to help FMA UK!”

FMAUK has seen previous success through gaming fundraisers. Frankie Lollia raised £1,795 in May 2020 through a gaming livestream on YouTube, smashing the original target of £500.

Fundraising will be supported by Give as You Live, an online innovative charity fundraising platform.

Des Quinn, FMAUK Chair, comments “People with fibromyalgia often try to find distraction and respite from their condition in things they enjoy. Online gaming is increasingly popular, so it seemed like the perfect way to raise money this Fibromyalgia Week. We’re incredibly proud to be part of such a supportive community. It’s wonderful to see people come together and spread the word.”

Annabelle Risdon, Director and Head of Partnerships at Give as You Live, adds “At Give as You Live, we’ve seen first-hand how difficult the past year or so has been for small charities like FMAUK. We’re incredibly happy to see money and awareness being raised for such a worthy cause.”

About FMAUK

Fibromyalgia Action UK is a registered charity run primarily by unpaid volunteers. The majority of volunteers are also fibromyalgia sufferers who work extremely hard, despite their condition, in order to forward the cause of fibromyalgia. FMAUK was established in order to provide information and support to sufferers and their families. In addition, the Charity provides medical information for professionals and operates a national helpline.

We aim to encourage NHS and other funding sources for new research projects. At present there is very little research being carried out in the UK and sufferers are told there is no cure. We hope that will be a statement of the past.

Mission Statement

To improve the lives of people with fibromyalgia by increasing awareness of the condition throughout the UK and elsewhere, and improve the awareness of, and access to, treatments for fibromyalgia.

Our Charity Registration number is: 1042582
Our HMRC Reference number is: available on request
Company Registration number is: SC492045

9 Helpful Gifts for Your Disabled Loved One

'9 Helpful Gifts for Your Disabled Loved One' written against a wooden background with wrapped presents

While I normally don’t talk about what gifts are helpful for those of us living with disabilities or chronic illnesses, I wanted to break with tradition this year and share some of my favorite gadgets and gizmos.

What changed my mind? Well, I’ve spent the last few weeks taking care of one of my guinea pigs. He’s been dealing with inflammation, pain, and an infection since the week of Halloween. If I could, I would love to get anything and everything that would be able to help him get lower pain levels.

This post contains affiliate links. That means I may monetarily benefit from you purchasing anything on this list. That said, payment for affiliates never comes at your expense. I also would not be promoting anything I didn’t personally appreciate, agree with, or review.

 

Benepod

Benepod is a new type of contrast therapy device which utilizes both hot and cold simultaneously to fight pain. By applying both hot and cold at the same time to a particular point on your body, the Benepod engages your bodies natural healing abilities by introducing a sensation known as the thermal grill illusion.

This device is used with a USB-C cable and must be plugged into a power source during use.

The research for the Benepod started back in the 1990s, meaning the company has been working hard at improving the device design to bring us the best possible one.

You can read my review or snag the Benepod on Amazon.

 

lotion bottle

Fay Farm CBD Rejuvenation Lotion

This lotion contains CBD, essential oils, and even magnesium. It leaves the skin happy and healthy without the greasy feeling a lot of powerful lotions can leave behind.

You can read my review and snag this in 2 oz or 8 oz.

 

 

Tens Unit screen lit up blue

Tech Care Pro TENS Unit

I’ve tried a number of TENS units, and this is the best one I’ve found for my own pain. The unit itself is light, compact, and easy to use. While it doesn’t have a pause button, it is powerful and I’ve never had to use it on medium levels at all.

You can read my review and snag your own on Amazon.

 

Oska Pulse with box, charging cable, and strap

Oska

The Oska Pulse has the cutest name backstory involving helping a koala recover from injury.

The research is there that Oska works – they have a ton of journal articles and research on their site for your perusal. It’s much more a device for preventing pain than treating immediate pain.

You can read my review and SAVE big! For the rest of the year, Oska is on sale for $344 if you use the code NSSD here.

 

Image result for quell

Quell

While my review was on their first edition, the new model is 50% smaller. It’s comparable to the size of a credit card now, making it less obvious that you’re wearing something on your leg. It has more power and more intuitive – it can adjust power on its own depending on your body positioning.

You can read my review. The code HOLIDAY30 saves you $30 off the Quell starter kit for the rest of 2018 here.

 

axon optics box with glasses case

Axon Optics

I would not be alive if it weren’t for my Axon Optics and, no, that’s not an exaggeration.

My migraines were so awful over the last year that I was in a really bad place. My glasses were one the one thing that helped me get through my day. They help filter out some layers of light which have been shown to cause or worsen migraines. While these may not work for everyone, they’re a must – especially for those of us who stare at screens all day.

You can read my review and snag yours on Amazon.

 

selfie of K with short black/brown/purple hair sticking up; they have on a brown paisley Vog mask

Vogmask

Thanks to Kenzie, I got my first Vogmask. As I’ve started to remove allergens from my life due to MCAS, it’s become incredibly important for me to have a mask on me at all times. The Vogmask is compact, easy-to-carry in my bag or pocket, and look snazzy.

You can get yours from Amazon.

 

FaSoLa Portable Weekly 7 Days Pills Organizer Case Round Medicine for Travel Drug Holder

FaSoLa Pill Organizer

I love this round pill organizer! I put all of my emergency medications in them – and, yes, I have seven now. It’s compact enough to fit in my bag, but big enough to hold what I need. Plus, you push the button and the circle advances to the next compartment.

You can snag this on Amazon or at Walgreens.

 

Books

I love reading. While I haven’t read all of these books, they’re all sitting on my bookshelf waiting for when I have more time.

  • Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine | Amazon
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain | Amazon
  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy | Amazon
  • When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky review | Amazon
  • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery | Amazon
  • Sick: A Memoir by Porochista Khakpor | Amazon
  • A Disability History of the United States by Kim E Nielsen | Amazon
  • The Ultimate Guide to Sex and Disability by Miriam Kaufman, Cory Silverberg, and Fran Odette | Amazon

Of course, gift cards and quality time are always appreciated, too.

Looking for more chronically helpful gifts? Check out this list I curated on Amazon!

photo of the benepod, the usb cable, and the adapter against a rainbow heart covered pouch against a wooden table; teal overlay with white text: " benepod review - not standing still's disease "

Benepod Review

The makers of the Benepod sent mine to me for free in exchange for my feedback and honest review.

Spring is always a rough time for me. The constant barrage of storms brings intense joint pain, especially around my knees. Thankfully, this year, I have the Benepod.

the benepod box with instructions, usb cord, and adapter

You may remember Lady Gaga sharing how she alternates hot and cold quickly for her chronic pain. That’s what this product does, albeit on a smaller scale.

underside of benepod showing a light ring of red around the outside and large circle of blue on the inside

The underside of the device has a red ring that heads up as well as a blue circle that cools down when plugged in. This leads to Thermal Grill Stimulus – something that can’t fully be explained yet. While we don’t know why it works, it can help mask or ease someone’s pain.

One of the coolest parts of using the Benepod is that there is no medication to take or topicals to apply. We really don’t have to worry about side effects like with other pain treatments. I don’t have to resort to extra NSAIDs that upset my IBS or the few muscle relaxers I have that make me woozy.

To use it, you plug the device in. A green blinking light will go solid once the device is ready to use. It’s good for twenty minutes which doesn’t sound like a long time but somehow is. If you want more time, you simply unplug the device, plug it back in, and wait for your solid green light.

It is a little small, so moving it can get a little cumbersome for my crippy arthritis hands. Thankfully, Saringer is already working on things like a strap to hold the device in place to make it even more accessible.

This doesn’t completely get rid of my pain. To be honest, I don’t think there’s any one thing out there that would. What Benepod does, though, is take my pain from a seven or eight out of ten to somewhere between three and five. As much as I loathe those medieval pain scales, they’re at least good to show progress in pain reduction.

With how many storms we’re having lately, I’ve been heavily relying on the Benepod to help me get through the nights. There aren’t many things I feel the need to always have close by, but this is one of them for sure.

Do I have to be near an outlet?

No! The fact this uses a USB cord makes it super easy to use a portable charger to power the pod. The cord is so long, too, that I’m easily able to use it in bed while plugged into a USB hub.

Is this affordable?

Look, I’ve reviewed some things that cost several hundred dollars. I’m happy to say this only costs $99! You can snag it on Amazon, too, which means you could use gift cards and get it quickly.

Is it worth it?

Completely. There are nights that I struggle to sleep because my knee pain is so bad. When I make time to use the Benepod before bed, I actually get a few hours of restful sleep.

pic of stones in background with overlay bordered by black and filled with lilac; the FCSA logo over black text: "Help Raise Money for the Fibromyalgia Center of Excellence" and "Not Standing Still's Disease"

(Don’t) Help Raise Money for the Fibromyalgia Center of Excellence

As of Memorial Day weekend 2018, they put up a photo appropriating indigenous US culture while discussing being a fibro warrior. I’m waiting to see how this pans out and will update further. Unfortunately, they’ve chosen to ignore feedback unless they receive it privately. This is not being accountable in the least. Because of this shitty reaction, they’ll stay on the blacklist I maintain at Chronic Sex.

How many times have you been in pain from fibromyalgia and no one believes you? Don’t you wish there was somewhere you could go to get better care? Or somewhere to refer your providers to for continuing education?

There is! The Fibromyalgia Care Society of America (FCSA), founding in 2015, focuses on pushing fibro healthcare into the 21st century. It’s a good thing, too, because we need more medical providers who ‘get it’ when it comes to fibro. Founder Mildred Velez is a fellow patient and has been since 2007.

FCSA wants to create the Center of Excellence where they will work with leading medical colleges and teaching hospitals throughout the country to offer elite multidisciplinary care. Once the first one is up and running, they hope to create more throughout the country. That means better care for all of us.

To get closer to their goal, FCSA is hosting a fundraising event – an awareness walk – throughout the month of May. You can partake online throughout the entire month! There are also a few live Caterpillar walks – May 5th in NYC, May 12th in Orlando, and May 19th in Newark.

Let’s all chip in what we can to help push fibro care to more acceptable levels, increase fibro research, and help each other!

May: The Ultimate Awareness Month

May 1st marks the start of an awareness month practically tailor made for me – asthma & allergies, arthritis, mental health, and fibromyalgia.
My asthma is, honestly, getting worse. When I eat or laugh or sneeze, I have a hard time getting my breath back to normal… which is probably a sign that I need to use my inhaler more. My allergies always pick up this time of year, though tend to affect my asthma more than causing problems on their own.
My arthritis is steady. I’ve come a long way in two years, thanks to my daily injection and other medications. When the weather is rainy and humidity is high, though, I’m reminded of my limitations – especially at night, when pain relief just won’t come. My hands, neck, hips, and knees are furious.
Mentally, I’m in a good place. Depression and anxiety are staying at bay for the most part, thanks to all the things I’m doing. My PTSD is another story, but that’s alright. With April being my birthday month and May being the month I cut contact with Mother (and having Mother’s Day in it), I know this won’t be an easy time of year.
My fibromyalgia is doing okay right now. I have had fewer skin-aggravating symptoms like allodynia, which is that thing when normal sensations like clothing on your skin or holding hands can feel excruciatingly painful. Today, that’s a thing that’s started and is spreading. I’ll push through cause I have some errands to run, but I’ll be glad when I’m home and can get naked as quickly as possible. I wanted to shower today, but I don’t know that I’ll be able to – the water feels like daggers on allodynia-affected skin.
I always feel conflicted when people say things like “don’t let your disease define you.” My conditions all do – they’ve defined my life from a very young age. They’ve also given me a level of appreciation and compassion that isn’t always a thing for abled people. I’ve gotten to do amazing things, meet the best people, and enact some real change – things that I don’t know I’d be interested in if I was okay.

 

Fibro-versary

Welp, today is the day (four years ago) I was diagnosed with fibromyalgia.
It took me breaking down in my old rheumy’s office to get anywhere with this diagnosis. I had been complaining for months about classic fibro pains AND the rheumy I had before this apparently putting in his notes that he thought I had fibro… without telling me. Then I finally went in crying because I knew I either had fibro or Multiple Sclerosis (which I watched my great grandmother suffer from).
I begged for whatever tests were needed to get me the truth so I stopped crying myself to sleep at night and debating getting into car accidents in order to get some pain relief at some point.
It’s been a long road.
(source)
I have to say that it’s interesting to really notice how much of a butthead my fibro is now that my SJIA is more under control. I don’t know that we really ever have had my fibro under control. I started getting trigger point injections (post coming soon-ish I hope) and will soon be starting acupuncture to deal with my neck/shoulder/back pain. I am already experiencing great pain relief and am ecstatic to see what happens in the future.
So, um, happy birthday fibro… you butthead.

 

Terminology Tuesday: fibromyalgia

Up until recently, fibromyalgia could easily be dismissed as a psychosomatic issue by some really sad doctors. The American Pain Society has labeled fibro a “lifelong central nervous system disorder.” But what does that mean?

Literally it means fiber muscular pain.

Symptoms include fun things like:

  • Problems sleeping
  • Problems with temperature regulation
  • Sensory overload or sensitivities
  • Headaches
  • Brain fog
  • Numbness and tingling
  • Irritable Bowel Syndrome
  • Allodynia (pain coming from a sensation that isn’t actually painful like T holding my hand)
  • Anxiety & depression
  • Muscle pain, weakness, and/or tightness
  • Feeling like something is swelling even if it isn’t
  • Irritable bladder
  • Fatigue
  • Muscle spasms
I could go on. There is really a lot that can fall under the symptoms category unfortunately.
Fibro sadly can affect everyone even children. Often fibro is a secondary condition to an autoimmune disease like RA. The vast majority of us are women, but the men that experience this pain are under-diagnosed and often don’t seek help. Also, fibro is a lot older than most people think.
As seems to always be the case with chronic pain diseases, we don’t know what causes fibromyalgia. Some can trace the onset to an illness, accident, or other stressful event (possibly PTSD related at times). Others can’t. The fact that it is now considered a CNS disorder will hopefully help us investigate further and find a cause.
Fibro is diagnosed through these tender points. Some doctors will make a diagnosis based more on the patient’s history than these tender points, but it all depends on their familiarity with the disease. That said, there are often tests to exclude other issues like problems with your thyroid or sleep apnea.
Sadly there are a lot of doctors who don’t believe fibro exists as I pointed out above. That means that people can live in pain for years before getting help. It’s important to bring this disease up directly if you feel as though you’re suffering from it. If your doctor reacts strongly in a way that suggests they don’t believe, get a second opinion.
Treatment isn’t awesome. Like RA and others, it often requires a multi-provider approach. Those on the care team can include your primary care doc, rheumatologist, physical therapist, mental health therapist, and pain management team to name a few.
Medications are often hit and miss.
  • Lyrica can be really effective, but some react poorly
  • NSAIDs
  • Milnacipran/Savella, a Serotonin–norepinephrine reuptake inhibitor
  • Gabapentin, which tends to make people sleep all the time
  • Cymbalta
  • Muscle relaxers like Flexeril
  • Narcotics/opiates
Unfortunately, the last few on the list make you really tired. Even if you felt like doing things due to pain being reduced enough (which isn’t often the case), you’ll be mostly asleep.
Massage can be helpful, but not always due to the sensory issues the body has. They tell you to reduce stress, but it’s so hard to stay calm when you can’t even wear clothing because it hurts to badly. Changes in diet and exercise as well as therapy can help, but do not always unfortunately.
It’s hard to communicate how this all feels to someone, especially if you’re trying to be intimate or accomplish tasks around the house or having to stay home from work. Saying that it hurts to wear clothes sounds silly in our heads. Often we feel unsuccessful – if we can’t do the basics, what the hell can we do?
The good news is that there are plenty of successful people living with fibromyalgia. My favorite is and always will be the amazing Morgan Freeman.
His fibro was triggered by the car accident he had in 2008. The arm that was broken in the crash is the spot most affected by the disease. He doesn’t speak a ton about it, but he is a great advocate.
Others include:
  • Sinead O’Connor
  • Susan Flannery
  • Jeaneane Garafalo
  • Michael James Hastings
  • Rosie Hamlin
  • Florence Nightingale
  • Frances Winifred Bremer
Those may not all be names we recognize, but they do good awareness-raising nonetheless.
The hardest thing for me is how it affects my interactions with the outside world. As I’m writing this I have a fan aimed at my fingers which are so angry from fibro pain. It’s almost like a burning tingle. I know that getting too warm caused it, so I’m trying to cool that most affected part of the body down. I may break an ice pack out shortly here.
I’m a really physical person. I love snuggling with T even if that just means touching feet while we’re on opposite ends of the couch. The pain this disease specifically causes is awful. It robs me of that physical closeness with my husband – or anyone else for that matter. My almost three-year-old niece isn’t going to understand if my hands hurt when she holds them. So I pick my battles. I will power through that pain for my loved ones. If it’s really bad, I’ll say something to T and we may hold hands or connect differently. I worry about what this means for when/if we have children.
I hope that this was a helpful article for those of you either dealing with fibro or wanting to learn more.