Friday

Gifts to give someone with chronic pain and what I want

Gifts for chronic pain
I have been looking far and wide (on the internet) for great gift ideas for people who have chronic illness and chronic pain.  The ones that I have found can help bring comfort and relief from the aches and strains associated with many different illnesses.

As someone with chronic illness myself I know that my number one gift to receive is a massage certificate especially from a practitioner who knows about myofascial release techniques which always help my tight painful muscles. 

I wanted to see what others were recommending so I have researched quite a few different recommendations which I have linked to here. These lists include pillows, heated foot spas, body pillows, aromatherapy oils and diffusers, nerve-stimulating machines, kitchen gadgets, vitamins, humidifiers, heated blankets, first aid kits, ice packs and heated seat covers: 

Many of these list suggestions are selling products on Amazon or elsewhere like relaxation CD's



or Adjustable Reading Portable Desk Helpers

I have made my own list which I hope you will find useful. They are in the infographic below. I am not selling anything in the list below as they are just the gift suggestions on my wish list.

6 most popular gifts for chronic illness

Tuesday

Fibromyalgia & weight gain resources

Fibromyalgia & weight gain resources

While weight gain, or the inability to lose weight, is not painful it is such a frustrating symptom in an already over flowing list of symptoms that make up Fibro. Weight gain is a common problem for those of us with fibromyalgia. It can be frustrating and challenging to manage, but there are steps you can take to address it.

I personally struggle with this and have been searching for helpful information. These are some of the sites (and 1 book) with interesting information about fibromyalgia and weight gain and their solution to this frustrating problem. I hope you find something that helps you.

Fibromyalgia and Weight Gain at Health Central. Lack of Sleep, Neuroendocrine Abnormalities, Decreased Activity, Medication and Weight-loss Strategies. 

Fibromyalgia and Weight Gain at Fibromyalgia Symptoms - fatigue and diet and exercise.

Foods that Fight Fibromyalgia: Nutrient-Packed Meals That Increase Energy, Ease Pain, and Move You Towards Recovery by Deirdre Rawlings. 

In addition to exercise and diet, managing stress levels is crucial for individuals with fibromyalgia. Stress can impact hormone levels and lead to weight gain. Finding effective stress-management techniques such as meditation, deep breathing exercises, or engaging in hobbies can help reduce stress and improve overall well-being.
It's important to remember that weight gain with fibromyalgia is a complex issue that can vary from person to person. I hoe you have a good healthcare provider who will discuss any concerns or questions you may have about fibromyalgia and weight gain. They may be able to provide personalized recommendations and guidance based on your specific needs and medical history or send you to a specialist who can. As an example I have been sent to a dietician who discovered I have food intolerances and an endocrinologist for my thyroid issues which are also connected to weight gain. 


Fibro Book Review: What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease

Fibro Book Review: What Your Doctor May Not Tell You About Fibromyalgia

Over a decade ago, Dr. R. Paul St. Amand, an experienced endocrinologist and UCLA assistant clinical professor, published his protocol for reversing fibromyalgia based on nearly half a century of research. 

This book - What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease - explains Dr. St. Amand's latest research on guaifenesin. He describes it as an inexpensive, safe, an increasingly available medication that can help reverse Fibromyalgia.

This is a controversial book - it divides people.  

The authors say they have seen symptoms eliminated and normal quality of life restored in an astonishing 90 percent of patients they've treated with guaifenesin.

In reviewing this book I am not endorsing this treatment, I personally have not tried the treatment though have previously written about it in 2009. I think it is valuable to educate yourself about conditions that you have and to know what is available - especially in the way of causes and treatments. Also Dr Amand is a clinical professor with many years research into Fibromyalgia so I am quite prepared to investigate his ideas in this book.

This book,  What Your Doctor May Not Tell You About Fibromyalgia, is updated and revised with more patient anecdotes and a deeper understanding of symptoms, treatments, and results.

There is: 

--information about the current treatment of fibromyalgia and what causes it
--new results from Dr. St. Amand's studies about the efficacy of guafenesin treatment
--changes in this disease protocol
--discussion of pharmaceuticals in treatment


About the Authors 
Dr. St. Amand is a professor of endocrinology and has been in private practice for over 40 years. 

Claudia Marek is his medical assistant and researcher, she counsels patients on how to use the treatment and as a former sufferer is a leading patient advocate.

Get the book here or read reviews of the book.

I am not endorsing this book but just providing you with information about what Fibromyalgia books are available. If you purchase the book through the link provided I receive a small percentage of the profit and no extra expense to you. 

Read what I wrote earlier about the Guaifenesin protocol.

Fibro Book Review: What Your Doctor May Not Tell You About Fibromyalgia

Sunday

Don't let yourself feel so bad about feeling so bad




When you have a chronic illness you have bad days... heck even the good days can feel bad! You can also have a flare which is like an extended bad day that can last for a few days, a week, a month or possibly even a year. I once had a flare that lasted 8 months and did not realize it was actually a flare until I suddenly felt better. 

If you are like me the bad days include either increased fatigue, pain and stiffness or cognition problems or a combination of all four. It's so easy when you feel bad to beat yourself up for not getting anything done, for lying on the lounge, for retreating to your bed, for not coping with the world at large, etc.

I'm here to tell you it's okay and NOT to go mad at yourself. 

Firstly you DO have a longstanding illness that you cope with EVERY DAY. You manage to get up and look normal most days and eat breakfast and cook dinner and all the other things you do when you are feeling pain, stiffness, tiredness, lack of restorative sleep etc. Most people have the flu when they feel like this. Many people take days off work when they feel like we do normally and WE battle on. Our normal is most people's sick. 

Secondly your verbal internal commentary and general feelings of badness - guilt, disappointment, sadness, anger, and "Oh Woe Is Me" - are only going to make the situation worse. Negative self-talk can actually make us feel worse - thoughts are a form of energy and negative thoughts can sap our energy. It has been proven in research that self-talk does have an effect on motor performance.

WHAT I DO WHEN I'M HAVING A FIBRO FLARE

When I'm having a bad day I try to go easy on myself. I look after me and no one else. 

  • I stay in my PJ's or softest comfy clothes and clear an area just for me. 
  • I gather all the things I might enjoy like a new book or a friendly old book, a cup of tea, a TV series to binge on, some delicious fruit, my laptop.
  • I clear the decks by taking the phone off the hook and locking the front door.
  • I get a water jug and cup and any extra pain meds I might need.  
  • I look after myself like I would look after a young child that I love. 
  • I try to say some nice things to myself like "you are ok", "you are going good", "you'll get through this", "you've been here before", "this too shall pass". 

Also if all else fails I remember as author and poet William C. Hannan said: 
“Sometimes, 
all you can do
is lie in bed,
and hope 
to fall asleep 
before
you fall apart.” 



Saturday

2010 set of criteria for diagnosing fibromyalgia

criteria for diagnosing fibromyalgia
In 2010, the American College of Rheumatology endorsed a new set of criteria for diagnosing fibromyalgia. Here is an excerpt from it:

A patient satisfies diagnostic criteria for fibromyalgia if the following 3 conditions are met:
1. Widespread pain index (WPI) > 7 and symptom severity > 5 or WPI 3-6 and SS scale score > 9

2. Symptoms have been present at a similar level for at least 3 months.
3. The patient does not have a disorder that would otherwise explain the pain.


criteria for diagnosing fibromyalgia

ASCERTAINMENT 

1. WPI: note the number areas in which the patient has had pain over the last week. In how many areas has the patient had pain? Score will be between 0 and 19. 
Shoulder girdle, 
left Shoulder girdle, 
right Upper arm, 
left Upper arm, 
right Lower arm, 
left Lower arm, 
right Hip (buttock, trochanter), 
left Hip (buttock, trochanter), 
right Upper leg, 
left Upper leg, 
right Lower leg, 
left Lower leg, 
right Jaw, 
left Jaw, 
right Chest 
Abdomen 
Upper back 
Lower back 
Neck 

2. 
SS scale score: 
Fatigue 
Waking unrefreshed 
Cognitive symptoms 
For the each of the 3 symptoms above, indicate the level of severity over the past week using the following scale: 
0 = no problem 
1 = slight or mild problems, generally mild or intermittent 
2 = moderate, considerable problems, often present and/or at a moderate level 
3 = severe: pervasive, continuous, life-disturbing problems 

Considering somatic symptoms in general, indicate whether the patient has:* 
0 = no symptoms 
1 = few symptoms 
2 = a moderate number of symptoms 
3 = a great deal of symptoms 

The SS scale score is the sum of the severity of the 3 symptoms (fatigue, waking unrefreshed, cognitive symptoms) plus the extent (severity) of somatic symptoms in general. The final score is between 0 and 12.

* Somatic symptoms that might be considered: muscle pain, irritable bowel syndrome, fatigue/tiredness, thinking or remembering problem, muscle weakness, headache, pain/cramps in the abdomen, numbness/tingling, dizziness, insomnia, depression, constipation, pain in the upper abdomen, nausea, nervousness, chest pain, blurred vision, fever, diarrhea, dry mouth, itching, wheezing, Raynaud's phenomenon, hives/welts, ringing in ears, vomiting, heartburn, oral ulcers, loss of/change in taste, seizures, dry eyes, shortness of breath, loss of appetite, rash, sun sensitivity.


Read the complete article (in pdf) from the American College of Rheumatology.




criteria for diagnosing fibromyalgia

Monday

What is a spoonie?

What is a spoonie? at Fibro Files


A spoonie is a term used in the chronic illness community and means someone living with a chronic illness. Here I'll explain a little bit about the history of the word and how we work out our daily quantity of spoons. 

The word started being used after Christine Miserandino wrote The Spoon Theory. In her story she uses spoons as an analogy for energy - the amount of energy she has available in one day - and people related so well to her theory that they started calling themselves "spoonies".
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. 

So a spoon is a measure of energy.  


HOW MANY SPOONS DO YOU HAVE?
When you are a "spoonie" you feel that everything you do costs you a spoon. Usually it's a physical activity like cleaning the house or other examples in the image below and also it can be an emotional activity like dealing with a stressful situation at work or at home. YES, even having a shower can use our energy! This is something often mentioned in the chronic illness community as in " You do not know what it is to have fatigue until you need to rest after having a shower."

spoon theory explained

You’ll find this nickname, spoonie, along with others, used by many people on social media such as Twitter and Facebook. It is not just used for people with Fibro but for anyone with a chronic illness. Christine Miserandino herself has Lupus, an autoimmune condition, causing amongst other things pain and fatigue. It is these symptoms that many people with different chronic illnesses have in common. The word spoonie provides a connection and an understanding that anyone with chronic illness has about their capabilities and their energy levels.
Other names, besides spoonies, that are used to describe people who have fibromyalgia are fibro warriors, fibro fighters, fibromites, fibro thrivers, and fibro survivors. We use these names to give us a sense of community with others who understand what we are going through. They are positive descriptive words that connect us with our fibro tribe. 

I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do.   Christine Miserandino
spoonies unite

spoonies chart
Here is where you can work out how many spoons you have used today! do you agree with the quantities in this image? 3 spoons for driving somewhere and 4 spoons for going to work?
I must admit while I have known about the spoon theory for years I have never sat down and calculated my daily spoons. It is just a comfort to know that other people understand. Are you like me in this?

Also, I think the word was very popular for a while and now it is not used as much. It is still accepted and understood as being a camaraderie amongst those in the wider chronic illness community but people with fibromyalgia seem to use fibro fighters or fibro warriors more often. Do you agree?

Sunday

Multiple chemical sensitivity and Fibromyalgia

Fibromyalgia and Multiple chemical sensitivity

Multiple Chemical Sensitivity (MCS) is an overlapping condition that frequently goes hand in hand with Fibromyalgia and many other conditions.


MCS is a syndrome where the sufferer experiences multiple symptoms when exposed to small amounts of everyday chemicals. Find out more including my personal story here.




And isn't is annoying! Out go all the perfumes - you can no longer wear - out go all the beautiful smelling candles and face products and hair shampoos. You can no longer use these without getting a headache, watery eyes and wheezing. 

The weekly pumping of gasoline causes dizziness, inability to concentrate and nausea. 


Heaven forbid walking into a nail salon or a freshly painted room.  


Yes, that's right the treatment for MCS is to try and remove all the triggers from your life. That's why going into the world is like a lucky dip - will I encounter someone with strong perfume or after shave in the elevator? Will I have to walk through the perfume department of the store to get to the manchester that I need? 


And can anyone please tell me why buying cleaning products, like shampoos and conditioners, with perfumes removed, cost MORE money.


No one seems to know whether Fibromyalgia leads to MCS or vice a versa or whether they have related causes.


MCS is a syndrome where the sufferer has multiple symptoms when exposed to small amounts of everyday chemicals. MCS is a term used to describe this condition which has heightened sensitivity to chemicals. It is also called Idiopathic environmental intolerance (IEI).

The bad thing is that, according to research at the University of Melbourne, occurences of MCS have risen 300 % in the last decade! 

Professor Anne Steinemann from the University of Melbourne estimates that 55 million Americans have chemical sensitivity.  Some people have only mild chemical sensitivities, while others have a more severe form.

A full list of the symptoms of Multiple Chemical Sensitivity are:

Asthma

Breathlessness

Coughing

Difficulty sleeping

Digestion problems

Dizziness

Fatigue

Headache

Impaired concentration

Joint pains

Lethargy

Memory problems

Muscle pain

Nausea

Runny Nose

Sinus

Sore throat

Stinging eyes

Wheezing

.............................................................................

The 1999 Consensus Statement criteria for Multiple Chemical Sensitivity (MCS) are:

1. The symptoms are reproducible with (repeated chemical) exposure.

2. The condition is chronic.

3. Low levels of exposure (lower than previously or commonly tolerated) result in manifestations of the syndrome.

4. The symptoms improve or resolve when the incitants are removed.

5. Responses occur to multiple chemically unrelated substances.

6. Symptoms involve multiple organ systems.

.............................................................................

Other overlapping conditions include:

Chronic fatigue syndrome

Costochondritis

Irritable bowel syndrome

Myofascial pain syndrome

Restless leg syndrome

TMJ or temporomandibular syndrome

.......................................................................

If you would like more scientific information about MCS please go to this informative article by Mithila at MCS Resource 

Understanding multiple chemical sensitivities


.......................................................................


Research Gate: Multiple Chemical Sensitivity Review

Multiple chemical sensitivity and Fibromyalgia


Thursday

Expectations with a chronic illness diagnosis

Expectations with a chronic illness diagnosis

When I was first diagnosed I was relieved to have that diagnosis and then I was pleased that I had the name and could now fight against it and get rid of it. After all hadn't I been taught that I could achieve anything I put my mind to or put effort into? Also haven't we all heard of the amazing recoveries made by people with debilitating illnesses?

But unfortunately that was not the reality with this illness.

I was a healthy person all my life. I had always eaten a healthy diet so it made some sense to me that trying this diet or cutting out sugar or losing weight or whatever was touted as the latest culprit would help me get rid of what ailed me. This went on for years. It was a long and drawn out bargaining with myself... If I tried this I would get better and so I went to dietitians, hospital obesity clinics and cutting edge allergy clinics, read many health books and tried many eating plans. I had good willpower but nothing stopped the fatigue, the stiffness and the muscle pain very much. Plus I could not lose weight and feelings of worthlessness crept in.

Then there was exercise - surely this must help. But alas no, the fatigue on attempting walking or swimming or biking was too great. This was disconcerting, to say the least, as I had always been fit and had been a ballet dancer and dance teacher for many years. Then I tried pilates and also yoga which many people told me was so good for them but for me it was just a world of humiliating pain as things I could previously do, like standing up from the floor, became more and more difficult. My muscle tone did not improve and neither did I build up strength.

Self management is considered an essential part of chronic illness by doctors. This is probably difficult for most people in chronic pain or those with other ongoing conditions as we feel overwhelmed especially early on. I think it took quite a while - years even - for me to accept that this chronic illness was here to stay and that this doctor or that new medication was not going to take it away. It was only when I accepted that this was my new reality that I could begin to improve small things in my life and look after myself.

This set off a new bout of depression and grieving for the life I use to have and all the things I could no longer do like going out dancing, or going for long bush walks. Also you become mentally tired of always thinking about the disease and thinking of ways to help yourself, reading and researching. And you are just plain tired - all the time. I think there was a period of stagnating and waiting to have the mental fortitude to begin again.

(Brain fog has set in now due to all this thinking, and I will continue this saga about my expectations in a later post)
Expectations and reality

The losses and the sadness they cause never go away completely - I think they are just now accepted as part of my new normal. Having an online community of people who understand is a great comfort. 

How can a doctor diagnose Fibromyalgia?

Criteria to diagnose Fibromyalgia
There is a lot of confusion around the diagnosis of Fibromyalgia. I personally have experienced this when I was seeking help for chronic stiffness and pain.

To keep things simple Fibromyalgia or Fibromyalgia Syndrome (FMS) is diagnosed by a doctor, nurse or other medical specialist when you have 11 or more tender points in SPECIFIC places on your body. (This way of diagnosing was current when I wrote this article. It has been superceded by the which you can find here. This does not mean that you will not have the tender points but they are no longer used as the definitive test for Fibromyalgia.)

The following is a diagram of these tender point spots. There are 18 in all and you must have soreness, on touch, in 11 or more to have a diagnosis. (Prior to 2010)

Fibromyalgia tender points


Fibromyalgia is now diagnosed according to criteria published by the American College of Rheumatology: widespread musculoskeletal pain and tenderness measured by the ‘tender point count’ on physical examination.

DIFFICULTY IN GETTING A DIAGNOSIS OF FIBROMYALGIA
There are many reasons why you may find it difficult to get a correct diagnosis.
Here are some I have encountered:
  • FMS can exist at the same time as other medical conditions and these can also be pain conditions e.g. I have Polymyositis which is an autoimmune condition which causes weakness and pain in proximal muscles but I also have FMS as I have tender point pain in 11 places.
  • There is no specific blood test for FMS.
  • There’s no scan, or imaging that can confirm fibromyalgia.
  • When blood work and imaging come back “normal,” some doctors may dismiss your symptoms or consider it psychological.

  • Many medical specialists believe that fibromyalgia is all in the head and this can range from a variety of opinions from it doesn't exist to, it is due to depression, to it is due to changes in neurochemicals in the brain.
  • One specialist told me that FMS is a diagnosis given to people in pain when they have not yet got a complete diagnosis.
  • Because symptoms are invisible and vary day-to-day, they can be misunderstood or dismissed.
  • FMS causes so many symptoms, not just pain, and the patient may not present with the pain as the other symptoms may be their immediate concern.
  • Not all healthcare providers are fully trained or up-to-date on fibromyalgia.
  • Some doctors diagnosis or mislabel it as stress, anxiety, or depression because these can all be a part of FMS.
  • If you have coexisting conditions (e.g., arthritis or IBS), fibro may be overlooked.
  • Symptoms need to be widespread and persistent for at least 3 months.

  • A single appointment might not capture the full picture — it often takes multiple visits and tracking symptoms over time.

  • Gender Bias

    • Fibromyalgia affects more women than men so men may not be as easily diagnosed.

    • Some studies show women’s pain is taken less seriously or written off as emotional, which can delay diagnosis.

  • Communication Challenges

    • Some people don’t realize how much their symptoms matter or may downplay them at appointments.

    • Or, they struggle to find the right words to describe symptoms like "fibro fog" or "deep bone pain."

  • Seeing the Wrong Specialist

    • Primary care doctors might refer you to rheumatologists, neurologists, endocrinologists, etc.

    • If none see the whole picture, it can lead to a diagnosis maze or even misdiagnosis.


Diagnosis of Fibromyalgia

You may also be interested in reading:

Thanks for reading my blog. I am Lee Good and I was diagnosed with Fibromyalgia in 1990 by an endocrinologist. I have spent many years researching and writing about Fibromyalgia. 

Saturday

How does Fibromyalgia differ from Chronic Fatigue Syndrome?

Fibromyalgia vs Chronic Fatigue Syndrome

Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS) have many symptoms in common. Research has found that there is a fine line between these 2 syndromes and the Arthritis Foundation says that between 50 to 70 percent of those with FMS fit the criteria for CFS.

The main difference between FMS and CFS are the symptoms of pain and fatigue - FMS is thought to have more widespread pain and CFS more fatigue.
When diagnosing CFS a doctor should expect a few differences.
FMS diagnosed with:
  • 11 to 18 tender points felt on the body
  • chronic widespread pain
  • sufferers often reporting having a specific traumatic event or long term stress prior to their symptoms commencing
CFS diagnosed with: 
  •  a low-grade fever, swollen glands or a sore throat 
  • chronic fatigue which is an overwhelming feeling of exhaustion that does not go away
  • sufferers of CFS tracing their symptoms back to a flu or viral infection 
is it Fibromyalgia or Chronic Fatigue Syndrome?

Do the differences really matter? In my opinion, and I am not a doctor, the differences do not matter because there is no cure or magic pill for either disease only treatment of the symptoms. The treatments that are tried are very similar and include lifestyle changes such as pacing, sleep therapy and gentle exercise, pain medications and antidepressants.  You can read about many of these treatment options on this site by looking through the list of articles.


This video aims to explain ME/CFS which includes Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Post Viral Fatigue Syndrome and help sufferers understand the illness and friends and family understand what their loved ones are going through. As you watch it you will see that Fibromyalgia symptoms are very similar to Chronic Fatigue Syndrome symptoms:
  • insomnia
  • unrefreshed sleep
  • post exertional malaise (tiredness after exercise)
  • pain after exercise
  • headaches
  • Irritable Bowel Syndrome (IBS)
  • brainfog
  • concentration problems
  • short term memory problems
  • muscle weakness
  • sensory overload
  • sensitivity to light
  • lack of energy

Tuesday

Fibromyalgia research studies in 2016


This is a round-up of all the research into fibromyalgia, that I can find, from 2016. It is very pleasing to see so much research being done on fibro and chronic pain around the world. 

It may take me some time to find and add all the studies so please call back if you are interested. Also if you know of any studies into Fibromyalgia not included in this list, I would love you to let me know. Thank you.