I really didn't want to write a newsletter this year because it has not been a good one and I do not want to bore you with our woes! However, that said, I felt I should communicate or you might wonder what had happened to us. I was diagnosed with colorectal cancer in May necessitating surgery which was fortunately successful though didn't go quite according to plan. It took a long time for me to recover. I had been scheduled for spinal decompression surgery which had to go into abeyance. I really don't want further surgery - yet - so will have to tolerate back, legs and feet pain until . . . As a result of all this I decided to give up doing my fibromyalgia blog although I did write two items, one before and the other after surgery, explaining what had happened. So if you are interested enough and have not already done so you can read the items in the archive menu on the right in 2016 for June and August.
It is with great gratitude to doctors, surgeons, nurses, physiotherapists and especially Chris, that I am still here and able to write this. My survival is a miracle. I also appreciate the prayers, cards and messages from those who knew of my situation.
During this period John was suffering with a sebaceous cyst on his back which caused him great discomfort and much pain, but that has thankfully now cleared.
On the plus side it meant that we got to see Helen who came to look after us while Chris and Colin were away on holidays. We see Michael occasionally too.
It is the younger generation who have the best news. Laura has been promoted to Senior Veterinary Practice Nurse. Steve has become a Special Constable in the Police. whilst maintaining his job as a driving instructor. Jointly they are buying a house in Henfield, a new-build on an estate, but it won't be ready for occupation until March/April next year. We shall miss having them around when they move.
That's about it from us. We haven't had any holidays nor done anything particularly interesting so this is a very boring letter! I do still knit for charities so my fingers are usually busy even if the rest of me isn't.
We wish you all the joys of the Christmas season Here's hoping that 2017 will be a better year with less health problems. Our fondest wishes to all Stella and John
WORDz for the WEEK 276. The problem with a solution to a problem is that a solution to a problem might itself cause a new problem in need of a solution.
The Wordz for the Week proved to be more true than might have been imagined! If you read my last blog issued on 11th June you will know that having been diagnosed with bowel cancer I was scheduled for surgery on 27th June. This did take place as planned but was a major operation and more complicated than envisaged. The estimated time for my stay in hospital was 7 - 10 days. My actual stay was 24 days. There was one problem after another, each needing a solution. I won't go into details but now I am home I have an @home hurse three times a week to change dressings and check on my wellbeing as well as physiotherapists who have tried to re-mobilise me. I have progressed from a zimmer frame to a walking stick, and can walk short distances without any aids. I have made a lot of progress but I still have a long way to go. Much is said of Fibromyalgia being life changing but not life threatening. Well, cancer is both life changing and life threatening. My life has been turned upside down. I have a new best friend - my stoma , I'm calling her Steph. She is my new life partner; without her I would be dead. She is just one of the life changes I have had to adjust to, her and her attached colostomy bags! It is now two months since my operation. I am sorry I have not updated you before now, but quite frankly I have not felt up to writing a blog. I have opened my laptop very rarely and there are thousands of emails piled up which I know I will never deal with. If you sent one and didn't get a response, then I apologise. The fact that I am writing this now is a HUGE achievement! I have been using my ipad for a few things and this was useful in hospital for Facebook messaging to family and close friends as I was not able to send emails. Neither could I write epistles such as this - not that I had the inclination. So . . . . . after two months, I am able to report that I AM making progress but it is going to be a long slow road to recovery, and that might well never be 100%. Although the surgeon assured me he had removed all the cancer there is no guarantee that it won't recur or spread elsewhere. For now, I am thankful for his skill and the care of all the medical staff who have been and are looking after me. A special 'Thank You' goes to my daughter Christine for all the TLC bestowed on me since my return home. To all my fibro friends, this is a farewell message because I do not envisage restarting FMS eNews. I enjoyed all the research, compiling the weekly blog and keeping in touch with you all. I knew I would have to 'give up' at some point in time either for sight reasons or just old age, but I could not foresee this so I did not expect it to be so soon. Thank you for your friendship over the years and the encouragement so many of you gave me. I wish you all well, literally. Fondest greetings Stella
This is not so much a FMS eNews but rather an update on my personal situation. I left you suddenly and abruptly and I do apologise. I have been very touched and grateful for the many messages of thanks and goodwill which I received after my last blog. I have not felt able to reply to them all individually but I really do appreciate all your concern and gratitude. I am now in a position to explain my situation. Besides fibromyalgia I have osteoarthritis and spinal stenosis - a narrowing of the spinal canal which causes nerves to be trapped and results in pain in the legs and feet. I was scheduled for spinal decompression surgery for 7th June, to relieve the pressure and hopefully reduce the pain. I was going to be out of action for about six weeks. However, the operation was not to be; it had to be postponed; everything changed. I was also in the process of getting my hips assessed. I had had a left hip replacement in 2006 and again in 2011 because the first one kept dislocating. The right one was probably due for replacement - but I didn't find out. Retrack to 2013 when I was diagnosed with ocular melanoma resulting in the removal of my left eye in the hope of stopping the cancer from spreading. Metastasis is most common in the liver and I have been having six-monthly MRI scans of my liver to check for tumors. So far there have been none. I thought I was OK. In mid May I had a rectal bleed and my doctor referred me for a rectal examination. A Sigmoidoscopy (May 20th) revealed a malignant tumor, possibly cancer, to be confirmed by biopsy. I was then scheduled for further tests, an MRI scan (June 2nd) , CT scan (June 3rd) and full Colonoscopy (June 9th). The outcome was that I have bowel cancer but only in one site - it has fortunately not spread. However, it is a primary cancer and unrelated to my ocular melanoma. It is apparently operable and is not terminal. I am scheduled for surgery on June 27th when part of the colon will be removed. I am keeping positive and trusting there will be a satisfactory outcome. So now you know why I have been off-blog! I shall not be returning for the foreseeable future, but that depends on my progress after surgery, and I understand that may well be a lengthy process. I wish you all well with all your various problems Have an enjoyable summer! Stella
I 'celebrated' my 81st birthday yesterday. I am getting old!!! But I had a lovely day spent in the garden with family and friends. The weather was perfect which contributed to an enjoyable and memorable day. Thank you to those of you who put birthday greetings on my Facebook page. They are much appreciated. I wonder how many of you read to the end of the blog or notice my personal message that I usually finish with? Last week I said:- "I am shortly going to take a break from blogging about fibromyalgia. I have other health issues which I need to deal with which will take much of my time. So I will be saying au revoir for a while. You are my fibro friends and you will always be dear to my heart. I will endeavour to keep you updated from time to time, or I may return to FMS eNews on a regular basis in the future. Meanwhile, I wish you all well . The blog will stay on-line and you can refer to past issues at any time."
Whilst I am away from the blog you may like to continue to read about fibro. I suggest you get signed up/subscribe to the mailing lists of any of the sites that you have enjoyed or found helpful many of which I use as a basis for my weekly offerings. The websites which deliver on a regular basis and which I find to be most educational and worth subscribing to are:- Fed up with Fatigue Health Rising Very Well , Fibromyalgia (I can't find a sign-up form on the new site but this page gives a selection of articles) Web MD (Form at bottom right of page) And you may like to check out the various fibro blogs from time to time.
I have been very grateful for the patient transport provided for my and my husband's many hospital appointments. However, the system changed on 1st April when the firm Coperforma took over. Since then we have both had bad experiences - delayed transport causing us to be late for appointments and having to wait for ages to be picked up afterwards. This week my husband had to wait five and a half hours to be brought home after a twenty minutes consultation. The stress and discomfort caused by such treatment is indescribable. Even their own website says that the service is unacceptable! It is very difficult to take oneself to such appointments as it is rare to be able to park near the entrance, and walking through a huge carpark is not an option. And I am not comfortable with driving anywhere other than locally, for various health (or lack of) reasons. I hope they get themselves organised into having a resemblance of efficiency before too long. It's a great system - if it works. Rant over! Now down to fibro business . . .
Research and new developments for fibromyalgia Arthritis Research UK, alongside the University of Nottingham and local NHS trusts, is supporting the world’s first national centre for research into understanding the mechanisms of pain in musculoskeletal disorders. The Arthritis Research UK Pain Centre aims to:
investigate how people experience pain
understand the biological basis of pain
develop new drugs to treat pain more effectively
improve the effectiveness of currently available pain-relief drugs
investigate basic pathways of pain perception to identify new targets for developing treatments.
Dear Friends, Welcome to the first interactive destination community for people living with and treating chronic pain! You are not alone. Our community understands what it’s like to live with pain, and we are here to support, empower and motivate you by providing access to health care providers, advocates, products, services and so much more, all to help you feel better. Join FREE and start using the CPC as your go-to place for improved health and community support. Gentle Hugs ~ Lynne Matallana See the video All About Pain The Future is no longer bleak and without promise for people in pain! The Community Pain Center (CPC)™ is your new destination for wellness, providing information, resources, services, support and motivation. JOIN the Community today for FREE and change the way you live life, and find more personalized solutions for the treatment of your pain. The CPC is “… What you have been hoping for!”
Background Information Humans have been in close partnership with animals throughout most of recorded history. We have depended on their working with us for our survival as they have tended livestock, guarded our homes, and hunted for game, among other types of work. Evidence of animals as companions has also been traced to the very beginnings of human history. The symbiotic relationship continues today and is gaining recognition as a therapeutic modality. This notion of animals as having a healing effect on humans is almost intuitive, considering our history in seeking their companionship. When looking at the therapeutic value of the human-animal bond in alleviating pain and associated symptoms, research is in its initial stages. Explore more about pet therapy . . .
Into the Fire: Summer Heat with Fibro To most people, summer is one of the best times of the year. You can go outside in flip-flops instead of snow boots and spend your weekends at cookouts or on a friend’s boat. But when you have fibromyalgia, summer can be miserable. For many fibro sufferers, the rising thermometer during summer heat brings an increase in pain and fatigue. Even though many fibro sufferers start out with problems during rainy and cold seasons, heat sensitivity seems to come along as the disease progresses. If you’re already dreading another summer, follow some of these cool-down tips to make your life more manageable. Avoid going outdoors during the peak heat of the day. You don’t want to become a shut-in during the summer and should try to make your life as normal as possible. However, the day’s heat is worst in the afternoon, so you may want to limit your outdoor activities to the early morning or late evening. If you do have to be outdoors during the hottest part of the day, wear a hat and stay out of direct sunlight as much as possible. What else? . .
Regular exercise is important for everyone. There’s a reason it appears in virtually every health-related article you read: it’s the best thing you can do for your health and to prevent disease. However, even though it’s actually more important to exercise after you’ve been diagnosed with a chronic illness like fibromyalgia, your symptoms can make it harder to get exercise. If you choose the right exercises, your illness should never have to stop you from being active. If you stay active now, you’re less likely to become completely disabled later, which is one big reason to choose to work out even when you don’t feel like it. Consider the following gentle exercises and lace up those sneakers. What are they? . .
Healing, Working With and Surviving FM: Day Two of the Fibromyalgia Summit During Day two of the Fibromyalgia Summit a "Paleo Mom (with a PhD mind you), a chronic illness work coach (who herself has two chronic illnesses), two doctors (one of whom had ME/CFS/FM), a functional medicine practitioner, the founder of the largest yoga school in the world, a homeopath, and the survivor of a traumatic brain injury will speak on healing and working with fibromyalgia.
Dan has recovered from ME/CFS/FM but the memories linger. Recently on a walk he was overcome by his realization of how very, very difficult life had been back then. Compassion flooded over him and he realized that if he could go back in time he would tell his former self one thing that would have helped immensely. Find out what that was . . .
Timely News! On the eve of International Awareness Day for Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome(CFS), Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS) I am happy to be the bearer of good news! The government of Ontario has just announced that a Task Force for Environmental Health has been formed, chaired by Dr. Howard Hu, Dean of the University of Toronto’s Dala Lana School of Public Health. Its primary task will be to advise the Minister of Health and Long Term Care on how to provide better evidence-based care for people with environmentally-linked conditions, notably Multiple Chemical Sensitivities (MCS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. If you have one or more of these conditions, or if you know someone who does, it is clear to you that the needs of patients with these conditions are not being met. People who suffer from these conditions are faced with medical issues (obtaining the right diagnosis and medical support), financial issues (obtaining disability benefits and other financial support) and social issues (significant loss of quality of life, prejudice, and friends and family who do not understand). Read on . . .
Given that fibromyalgia pain stems primarily from the central nervous system (CNS), nonpharmacologic therapies may provide greater benefits than opioids and narcotic analgesics, according to a presenter at the 2015 American Pain Society Annual Scientific Meeting. Fibromyalgia, now largely considered a lifelong CNS disorder—and the second most common rheumatic disorder after osteoarthritis—is still widely misunderstood and can be difficult to diagnose, according to Daniel Clauw, MD, professor of anesthesiology at the University of Michigan, Ann Arbor. “Fibromyalgia can be thought of both as a discrete disease and also as a final common pathway of pain centralization and chronification,” said Dr. Clauw during a plenary session on the neurologic basis for fibromyalgia. “The condition can be hard to diagnose if one isn’t familiar with classic symptoms because there isn’t a single cause and no outward signs.” Read on . . .
Outsmart chronic pain. Quell’s patented, 100% drug free OptiTherapy® technology automatically adjusts therapy and dose to ensure you receive optimal pain relief. It even senses when you are sleeping and adjusts to a gentler mode. Quell is more than just innovative technology. Every aspect of the product is designed for wearability and comfort. Quell’s slim, lightweight design ensures that it is as discreet as it is powerful. Innovative technology. Not to be confused with a sports band or brace, Quell packs a powerful punch of advanced neurotechnology. It's precise, powerful and personalized to your needs. Learn more about tech specs. Accelerometer assists Quell in automatically transitioning between therapy levels to meet your body’s needs. Bluetooth® technology connects to an enhanced smartphone app which allows you to control therapy and track 8 important dimensions of sleep and therapy trends. Lithium ion rechargeable battery now provides up to 25% longer battery life, which will typically provide between 30 and 40 hours of therapy. Find out how Quell works. . . This product is reviewed by Donna Gregory in her blog . . .
Fibromyalgia is a chronic pain disorder that affects an estimated 10 million people in the United States, according to the National Fibromyalgia Association. It’s unpredictable and symptoms vary, but it’s generally characterized by chronic widespread pain, fatigue, abnormal pain processing, sleep disorders, fatigue, problems with cognitive functioning, migraines, anxiety and depression. Symptoms come and go, and no cure exists, but experts have found a number of treatments that may help improve functionality. Fibromyalgia is more prevalent in women, and research indicates there could be a genetic component as well. But despite the large number of people who live with it, the average person knows very little about fibromyalgia. The Mighty teamed up with the National Fibromyalgia Association and asked their community what they wish others understood about the disease. Here’s what they had to say: Read the list . . . And watch the video . . . Chronic Illness on The Mighty "It's a chronic condition. I'm not going to 'feel better soon.'"
Having a chronic illness like fibromyalgia or ME/CFS doesn't just mean dealing with one thing. Instead, we've got dozens ... maybe hundreds ... of issues that come up. They can be physical, mental, emotional or social. This week, we'll look at a few of those issues and how you can manage them. Take care of yourself! Read Adrienne's articles . . .
I am shortly going to take a break from blogging about fibromyalgia. I have other health issues which I need to deal with which will take much of my time. So I will be saying au revoir in a while. You are my fibro friends and you will always be dear to my heart. I will endeavour to keep you updated from time to time, or I may return to FMS eNews on a regular basis in the future. Meanwhile, I wish you all well . The blog will stay on-line and you can refer to past issues at any time.
N.B. The links on this my FMS eNews blog are in theBROWNtext, usually in the title of each article but occasionally elsewhere too. Some titles have no links in which case the title is inGREEN like the dividers. This blog gives just a taster of each article which can be viewed in full through its link. The sites included are in alphabetical order. 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 any way 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 fmsstella@gmail.com and you will be added to the emailing list.
May 12th came and went. There was a lot of purple circulating on the internet and countless graphics celebrating the day. Here is a small selection. We'll now have to start thinking about what to do to mark Fibromyalgia Week in September. Put your thinking caps on! I hope the world is wiser. Public buildings throughout the country were lit up but I haven't had time to copy those photos - maybe next week?
Fibromyalgia, a widely misunderstood illness, confuses and frustrates both patients and doctors alike. I know because I’ve seen it from both sides—as both a physician and a woman with the illness myself. This common chronic disease is characterized by widespread muscle pain, fatigue, and brain fog. It’s estimated that 5 million Americans currently suffer from the disorder, and close to 90 percent of those diagnosed are women. Still, there remains a lot of confusion about what the illness really is and how it’s treated. Here are five truths about fibromyalgia that are not widely known, even by most doctors: 1 . Fibromyalgia is real and can be treated—but it requires a holistic approach. 2. It’s no longer a complete mystery. 3. Fibromyalgia is primarily a sleep disorder. 4. Most doctors don’t know much about fibromyalgia—and it’s not their fault. 5. There is no cure for fibromyalgia, but there are effective treatments. Read all the explanations . . .
The chronic pain therapy ActiPatch, developed by BioElectronics Corp., has reached positive results in a seven-day trial evaluating its efficacy in chronic pain management. Results from the trial of the pulsed shortwave device have been released in a report entitled “A UK registry study of the effectiveness of a new over-the-counter chronic pain therapy,” published in Pain Management. Management of chronic musculoskeletal pain often requires pharmacologic and nonpharmacologic therapies that have been shown to be ineffective, poorly tolerated, or inadequate in many individuals. Common causes for chronic pain include rheumatoid arthritis, osteoarthritis, injuries, and fibromyalgia.
Celebrating Awareness - International Awareness Day 2016 "Discovering Hope", Pace-gate (the end of CBT/GET... or not?), Do You Remember You?, the #MIssing Millions, the Long Journey - check out blogs, events, a free book and the most impactful video's ever in a celebration of International Awareness Day. *** Sex, Guts and Complex Diseases: The Fibromyalgia Summit Day One - Becky-Mauldin-N.D. The Fibromyalgia Summit has begun! On the busy first day of the Summit, learn how to methodically attack complex diseases, rebalance the gut,how sex can help, how low carb diets can benefit the brain, a Buddhist approach to pain, and more *** Are You 'Activated'? Mast Cell Activation Syndrome - A Review Mast Cell Activation Syndrome is new to the medical profession - much newer than ME/CFS or FM. Diagnostic criteria were only proposed about five years ago and because most doctors don't know about it, it's rarely diagnosed. But it can cause all the symptoms in the book and its proponents think it's much, much commoner than thought. It's also often associated with POTS, Elhers Danlos Syndrome, Lyme Disease and ME/CFS/FM. Dr. Klimas has called it one the most interesting immune diseases going. Find out about the basics of this curious disease in Remy's review of Dr. Afrin's new book on it *** How to use Medical Marijuana Without Getting High Surveys suggest that medical marijuana presents an opportunity to do some much needed good for people with ME/CFS/FM. Used correctly it can relieve pain, provide much needed relaxation, and enhance sleep. Used incorrectly it make you sick or leave you flying like a kite. Donna Gregory Burch tackles how to use this controversial product safely in ME/CFS and FM . . . *** Did the "Keep Psychiatry Out of the NIH Study on ME/CFS" Help for Hurt? The Keep Psychiatry out of the NIH Clinical Center study petition has been signed by over 2,000 people and , on the face of it, it makes sense. Who would want psychiatry in one of the most important studies ever done on ME/CFS? I certainly wouldn't. But did it help or hurt? Find out more . . . *** Wine Substance Beats Lyrica in Fibromyalgia Study Lyrica was tested in mice models before it was tested in humans. Recently a substance found in wine called resveratrol took on Lyrica in a fibromyalgia mouse model test and guess what - resveratrol appeared to be more effective at reducing neuroinflammation than Lyrica. Find out more . . . *** New Hemispherx Prez Says Getting Ampligen Approval Top Priority After the FDA nixed its approval for Ampligen and saddled its producer, Hemispherx Biopharma, with paying for a large new trial, it looked like Ampligen was dead and gone. Francis Collin's promise to increase ME/CFS funding, however, caused a seismic shift in the drugs outlook. Hemispherx Biopharma's board quickly fired its controversial, longtime CEO, William Carter, and appointed Thomas Equels to the post. In an interview Equels said he had one and only one priority: get FDA approval for Ampligen. Find out more in a Simmaron Research Foundation sponsored post . . . *** Can Simple Blood Tests Help to Identify Chronic Fatigue Syndrome (ME/CFS)? Six months after an adolescent comes down with infectious mononucleosis/glandular fever.she's still exhausted - and her doctor is about to tell her she's depressed and send her to a psychiatrist. But what if a very simple blood test - one that the doctor used all the time - could tell the doctor that she actually had ME/CFS? How much easier would that make things for everyone... That's what a team of researchers tried to find as they followed 300 people with infectious mononucleosis. Find out what happened . . .
Often when we think about fibromyalgia, we think of muscle pain, fatigue, sleep problems, digestive complaints and mood issues. However, many fibromyalgia sufferers also deal with rashes and other skin changes, which can be distressing and uncomfortable. Fibromyalgia and Skin Problems As many as 50 – 80 percent of individuals diagnosed with fibromyalgia will develop skin problems, including rashes. These rashes can make you feel uncomfortable wearing clothes, sleeping at night, or feel unattractive. Read more . . .
This week I have been very impressed with the Invictus Games and the brave, injured and sick Servicemen and women. who participated. What a spirit of perseverance despite pain, of victory over adversity, of elation after injury. Not only the athletes but the choir, nurtured by Gareth Malone, who sang so movingly the song they themselves had created relating their journeys from despair to hope. I salute them all, especially Prince Harry who made it all possible. Some had PTSD but I don't think any of them could have had fibromyalgia!, except Morgan Freeman, the actor, who gave an introductory speech. Although it wasn't mentioned, he is known to have fibromyalgia. I wonder if that was the reason he was chosen to participate? Well wishes Stella
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. The sites included are in alphabetical order. 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 any way 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 fmsstella@gmail.com and you will be added to the emailing list.
