Other highlights this week include:-
Is transcranial Direct Current Stimulation the new best treatment?
We are propelled into a future where ME/CFS/FM are no more - through awareness, fundraising and research in world-wide co-operation. It could be done. We can begin it. (See Health Rising) Here's hoping it doesn't take fifteen years.
Could we have the first biological test for fibromyalgia ever?
And of course, much more!
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+WORDz for the WEEK
258. There are times that our lives reflect our feelings and times that our feelings reflect our lives.
Sure, doctors and medications are necessary parts of health care. But did you know you can do a lot to alleviate your symptoms, all on your own? This week, we'll explore multiple researched-based therapies that you can try -- most of which are side-effect free!
And before you blow these things off, you should know that many of them have helped me and a lot of other people!
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+How Lyrica Changes the Fibromyalgia Brain
Lyrica (pregabalin) makes changes to brain structure and gray-matter volume in people with fibromyalgia, according to research (Piui) published in early 2016.
Lyrica was the first FDA-approved drug for fibromyalgia. It's an anti-seizure medication, but it's also been found to work against the pain of fibromyalgia, diabetic neuropathy, and surgery.
However, exactly how it does so isn't clear. This new research may help explain how Lyrica works to combat pain.
Read about it . . .
Today I told some new work colleagues that I suffer from fibromyalgia. They, like most people, had never heard of the condition and so I tried to explain it – briefly but specifically, trying to perfect the balance between being capable but… unable. Although I have lived with chronic pain for over seven years, sometimes I just can’t find the words. I decided that I should probably practice some kind of fibromyalgia elevator pitch – a 60 second explanation for situations such as this – but without said pitch to hand, instead I told them to check out my blog – and not just because I’m a brilliant self-promoter! I genuinely thought it was good way to explain things. That is, until I wondered, where on earth would they start? . . .
To get you started, here’s my toolkit:
1. The background (via Defy Pain)
2. Spoon theory (via New Life Outlook)
3. What does it feel like? (via A Life Less Physical)
4. 8 things you should know (via February Stars)
5. 20 things I experience (via A Life Less Physical)
6. 12 bloggers share their #1 survival tip (via Fed Up With Fatigue)
7. A community of spoonie friends (via Sarah in Wonderland)
8. But you don’t look sick (via Make It, Bake It, Fake It)
9. The mask of chronic illness in life and work (via Hope in Pain)
10. Lesser known fibro symptoms (via New Life Outlook)
Find more info and the links . . .
Parenting a Disabled Child When You Have Fibromyalgia
Parenting is hard. Living with four chronic illnesses is really hard. Having two kids, one with a profound disability, and being sick yourself is really difficult sometimes, to say the least.
I have two boys ages 15 and 12. My oldest son has spastic quadriplegia cerebral palsy. His muscles are really tight and stiff and he has very low muscle tone in most of his body, so he uses a power wheelchair to get around. He has a lot of trouble with his fine motor skills, so because of that I have to help him with many tasks.
Read the rest of Shen's story . . .
It’s been two years since I was diagnosed with fibromyalgia. It took me around two years to reach that point, which means it’s been four years in total that I have lived with this condition. I know many people view their illness as a blessing and turn it around into a positive. I don’t. I’m not one of those people. Don’t get me wrong, I’ve learned so much and I’ve grown a lot as a person because of everything that has happened to me. I’m positive, I’m happy and I get on with things as best I can. But the truth is, fibromyalgia is a horrible condition and I wish I didn’t have it. I don’t believe there is anyone who would feel differently. . . .
1. Diet changes really do help, you just need to experiment and stick with it
2. Stretching and gentle exercise will be one of the best things you can do for yourself
3. Don’t Push Through It
4. Don’t put off making tough decisions– they are worth doing
5. Drugs aren’t the only option and they will only help you to a certain extent
6. You will probably only get so far with your GP but don’t let that stop you from moving forward
7. You need to take a multi-faceted approach to treating fibromyalgia
8. Never Give Up!
See Donna's advice . . .
As my long-time readers know, I’ve been following the lawsuits related to Cymbalta’s withdrawal symptoms closely on FedUpwithFatigue.com. I was recently asked by Prohealth.com to do a story on the lawsuits for their readers. I’m reprinting that story here with the editor’s permission.
I’ve created a special resources page for anyone interested in Cymbalta’s withdrawal symptoms and the pending lawsuits. It includes all of FedUpwithFatigue’s Cymbalta-related posts, links to news stories, support groups and other useful information.
Read Donna's article . . .
We felt it was prudent to advise you that we have a problem with our numbers for the forthcoming Conference in April.. We are encouraging everyone who has booked or is likely to book to please tell their friends and family. We NEED more delegates.
Sadly without a boost of approximately 100 new delegates, we will be forced to cancel. Our deadline for this decision is February 20th.
We cannot meet the terms of our contract with the hotel unless we get more bookings. This is obviously as a last resort.
We will keep you advised and will be in touch after February 20th.
Jeanne, Simon and Nicki
So, please book now. If you had been thinking of booking, or even if you haven't, why not do it right away and help save the conference.
Tada! Once again we have managed to produce another magazine. This month's was jinx'd so apologies as it's not of our usual standard - hopefully we will be back on track before next month. It's amazing that we continue to achieve so much each month despite pain, fatigue and fibro fog, not to mention gremlins in computer systems!
You can help, send us articles, stories etc. We really do need them. (Email to firstname.lastname@example.org)
Hope you enjoy this month's issue and find it as informative and entertaining as usual. Beth X
Spoonie talk – What came first? Your pain?, or, your depression? by Fibrofly73
After reading the study, ‘Impact of Pain on Suicidal Thoughts and Behaviors‘ via EDS Info (Ehlers-Danlos Syndrome)‘, my brain began to slowly remind me of my past and the very long battle that I endured regarding my pain versus my mental health. The persistent lack of understanding and being made to feel like I was lying and making my health problems up. It’s bad enough when our nearest and dearest don’t believe us or understand us let alone our own Medical care providers. I do, personally, find the Article and study to be an interesting read, but, with not so surprising statistics really.
Please note: The purpose of this post is not to review the article and I speak with reference to my own experiences regarding chronic illness, pain, depression and anxiety over a the course of 20+ yrs and how suicidal thoughts were present as a result of events and occurences connected to my chronic illnesses.
Pain was here first! Not my depression!!
Read all of Carole's (Fibrofly73) story . . .
6 Things You Can (AND SHOULD) Say to Someone with Fibromyalgia
The Internet has been flooded recently with blog posts about “What not to say to someone with chronic pain, fibromyalgia, etc.”. You’ve probably seen a few show up in your news feeds – in fact, we’ve shared a few of them ourselves. They can absolutely be helpful to friends and family members looking for some “fibromyalgia etiquette” or advice on things they may say that could inadvertently hurt their loved ones with fibromyalgia.
Seeing all these wonderful blog posts got us to thinking – what about the things you SHOULD say? Now that they’re well versed on what not to say, it may be helpful to know which things we may want them to say. Of course, not everyone with chronic pain like fibromyalgia is the same – but we tried to create a list of # things we thought most with fibromyalgia would want to hear from friends or loved ones.
If you suffer from fibromyalgia or another chronic illness – share this list with your friends and use it as a conversation starter to help them understand how your fibromyalgia affects you.
#1 – Tell me about fibromyalgia
#2 – Tell me about how fibromyalgia has affected you personally – and the impact it has had on your day-to-day life.
#3 – I can’t imagine having that much pain everyday…
#4 – I’m here if you ever need to talk
#5 – It’s okay if you can’t…
#6 – What is the best thing I can do to help or support you?
Read more details . . .
Nothing. Absolutely nothing.
It often takes me anything from half a day to a full day to write a newsletter. However this newsletter is not going to take long to write, as there there isn't much one can add to the word "nothing".
But just to confirm: our glorious Prime Ministers's "re-negotiation" failed to get back the hundreds of banned health supplements, most of which were banned for the pettiest of reasons (in my opinion, in most cases the real reason was because they conflicted with the vested interests of the big corporations which time and time again, EU policies protect, and at the expense of small innovative business). He failed to get back your right to decide what health supplements you can put into your body (as though it ever was anybody's else's business in the first place, providing they are not blatantly toxic). He failed to get back your right to be provided useful and meaningful information on the products that are not banned. He failed to get the directive overturned which effectively makes any substance on the planet into a medicine (even water) at the whim of an unelected EU bureaucrat which can then be restricted or regulated at the drop of a hat. He failed to put a stop to TTIP, which means could mean the UK (in fact the entire EU) will be flooded with genetically modified (and as far as I am concerned, dangerous) foods.
Read more . . .
The End of Chronic Fatigue Syndrome (ME/CFS): It Happened This Way...
One way to accomplish something is imagine a future in which it has already occurred and then work backwards and show how it happened. Doing that illuminates what needs to happen now in order to produce that result. This is a thought experiment that explains how ME/CFS and FM were completely beaten in just 15 years...
DATELINE: Jan 29th, 2031 – Federal officials Announce the End of Encephalitis Variosa (aka chronic fatigue syndrome, fibromyalgia and others.)
Today the NIH announced that the medical world had conquered its first chronic illness. Encephalitis variosa, formerly known in its various manifestations as chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, interstitial cystitis and vulvodynia is no more. The most remarkable thing was not that the medicine had conquered its first chronic illness but that that it had done so with these diseases.”
Continue reading this hypothetical story . . . If only!! Well maybe??
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+Feds Fail First Test of the “New” Chronic Fatigue Syndrome (ME/CFS) Era
The feds have been stating that ME/CFS is a very serious disease – that it’s a priority – that they’re REALLY committed to helping people with ME/CFS for years. I’ve never heard anyone at the NIH ever state they believe ME/CFS is a minor disorder.
The proof, though, is always in the pudding. The takeaway message from years of observing “fed-speak” is that only action counts. There’s certainly reason to hope.
A lot of promises have been made. The director the NIH himself, Francis Collins, has been very supportive.
It’s time, though, to check out the pudding.
Read on . . . The reality!?
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+More Than Skin-Deep: The Small Nerve Fiber Problems in Fibromyalgia – A Review
We don’t generally connect fibromyalgia with skin problems. The skin, though, may present an important window into what’s going on in fibromyalgia.
We use the blood vessels and sweat glands in our skin to warm or cool us. Both blood flows and sweat glands are largely controlled by the autonomic nervous system (ANS) – a system of concern in FM. The skin also tells the brain via its sensory nerves what are bodies local environment is like. Aberrant nerve transmission along these nerves could cause pain, numbness for other symptoms. The skin contains unmyelinated nerves that appear to be under attack in some people with FM.
Read on . . .
New Blood Test For Fibromyalgia Is 99% Accurate Everyone Must Know ‘advanced Mold Remediation’
A new blood test for fibromyalgia is more accurate than previously thought and will not confuse the chronic pain disorder with other diseases such as lupus and rheumatoid arthritis, according to the physician who developed the test.
“We have not seen any overlap between the biomarkers in fibromyalgia and the immune system patterns of patients with rheumatoid arthritis or lupus. That really takes the air out of the sails of any naysayers that are out there,” said Bruce Gillis, MD, founder and CEO of EpicGenetics, a bioresearch company based in Santa Monica, CA.
Read more . . .
A new device that uses transcranial Direct Current Stimulation (tDCS) has received approval in Europe for the treatment of fibromyalgia and migraine headache.
The product, called PainX uses an array of electrodes positioned on the scalp that deliver low-intensity direct current to a region of the cerebral cortex to either control perception of pain or modulate reaction to painful experiences.
Treatment is typically administered daily for 3 weeks with additional continuation sessions administered weekly for a total of around 20 sessions. According to its manufacturer, Soterix Medical, in clinical studies most people experienced rapid benefit. Some studies showed sustained benefit ranging from 3 to 12 weeks post-stimulation.
“tDCS is a highly-promising therapy for adults living with chronic pain without the systemic side effects commonly associated with oral pain medications,” the company noted in a press release.
Find out more . . .
You will never know the pain I’m in. Not because you don’t care, but because you care too much.
You care so much, but in a really unhelpful way. You mean well, but your fretting is counterproductive. It doesn’t help, but rather causes even more problems fro me. So I do all I can not to let you know how I feel. When you ask, I will say I’m ok. I will play all my symptoms down. I won’t elaborate. I know you’re concerned about my wellbeing, but I don’t want to talk about my pain. I’d like the chance to have a normal conversation with someone to forget the pain, not have it highlighted to me.
More . . .
Find YOUR light, maybe at the end of a tunnel!
Sincerest greetings to you all.
or leave your comments below under 'Post a Comment'
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+N.B. The links on this my FMS eNews blog are in the BROWN text, usually in the title of each article but occasionally elsewhere too. Some titles have no links in which case the title is in GREEN like the dividers. This blog gives just a taster of each article which can be viewed in full through its link. If you have any navigation problems, let me know.
I would like to point out to you that the information in my FMS eNews blog is passed on to you mainly from other sources. Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. Sites I refer you to are for information only. They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgments, accept or reject as you will. Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.
I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity although I do work in conjunction with other bloggers and Facebook groups.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to email@example.com and you will be added to the emailing list.