Wednesday

Exercises for Fibromyalgia: The Complete Exercise Guide for Managing and Lessening Fibromyalgia Symptoms

Exercises for Fibromyalgia: The Complete Exercise Guide for Managing Fibromyalgia
Studies consistently show that exercise helps restore the body’s neurochemical balance, boosts energy, restores sleep, and overall improves the emotional state. 
As medical practitioners, we see both great results with exercise and, at times, aversion to it due to a negative prior experience and exacerbation of symptoms. 
It is this double-edged sword that patients and we as physicians face in using therapeutic exercise in the treatment of fibromyalgia. 
On the one hand, exercise is another form of exertion for someone who already has decreased endurance, fatigue, and disturbed sleep. 
For someone with fibromyalgia, to take on an exercise routine means overcoming the above barriers, only to face the next question: How do I exercise so that I get the benefits without getting the unwanted increase in fatigue and pain? What are the appropriate exercises and where do I start? Zinovy Meyler, D.O., Co-Director, Interventional Spine Program, Princeton Spine and Joint Center 
In Exercise for Fibromyalgia, rehabilitative specialist William Smith has created a book that details the theory of exercise with the clinical experience and empirical evidence, showing the science behind appropriate therapeutic exercise.  This book is a much needed road map in the maze that can be fibromyalgia.


The maze of Fibromyalgia

Fibromyalgia is a debilitating condition, yet medical opinions are divided as to its cause and how it should be treated. Is it a neurological or a physical ailment? Should you treat the muscles or the mind? The correct answer is to treat both. Improving overall fitness while reducing anxiety and stress is the key to reducing your fibromyalgia symptoms and improving your daily functioning.

This book Exercises for Fibromyalgia is designed to improve your fitness and energy levels without strain or stiffness. With a focus on exercises designed to relieve pain and improve sleep for fibromyalgia sufferers, you will find yourself feeling better each day, as your strength increases and your soreness decreases.

Combined with effective techniques proven to relieve stress and improve your sleep habits, Exercises for Fibromyalgia makes sure your mind and body both benefit from a healthy lifestyle.

Exercises for Fibromyalgia also includes:

- An overview of living with fibromyalgia and the benefits of exercise
- Clear, informative pictures of safe, effective exercises
- Detailed instructions on how to perform each exercise
- A complete exercise approach to reduce stress and improve fitness
- A training log to track progress

Having fibromyalgia doesn’t mean having to give up exercise as this book can show you how safely.

If you are interested you can get more information here Exercises for Fibromyalgia: The Complete Exercise Guide for Managing and Lessening Fibromyalgia Symptoms

I am an Amazon affiliate which means that I will receive a small payment, at no extra cost to you, for any purchases made through the above link. Thank you.

Thursday

Tai Chi for fibromyalgia

Tai Chi for fibromyalgia

Researchers have found that there are greater improvements in Fibromyalgia symptoms in people doing tai chi than in people doing aerobic exercise.

Tai chi, is an ancient Chinese exercise that came out of martial arts that has since become part of traditional Chinese medicine. Tai chi combines deep breathing and relaxation with flowing movements.

The study was led by Dr Chenchen Wang from Tufts University's Center for Complementary and Integrative Medicine in Boston to compare the effects of tai chi with aerobic exercise. 226 adults who had fibromyalgia participated in the study. None of them had engaged in tai chi or other types of alternative therapy in the 6 months before starting the study.

When the study began, the researchers questioned the patients about their physical and mental symptoms, including the intensity of their pain, ability to move, fatigue, depression, anxiety and overall well-being.

The patients were assigned to either aerobic exercise therapy or tai chi. The exercise group completed two supervised aerobic exercise sessions each week for a total of 24 weeks. Those who engaged in tai chi followed one of four treatment plans: one or two sessions per week for a total of either 12 or 24 weeks.

The patients continued taking their medication and made regular visits to their doctor.

This was a single-blind randomised controlled trial and the research was published in BMJ on 21 March 2018.


Researchers found there were greater benefits in people who did tai chi, compared with the aerobic exercise, when done twice a week for 24 weeks.

All patients experienced some relief of their symptoms, but the improvements were much greater among those in the tai chi groups at the end of 24 weeks.The researchers suggest that tai chi should be considered as a therapeutic option for the management of fibromyalgia.

“We think our results suggest that physicians should think about what type of exercise is best for their patients with fibromyalgia,” says Wang. “We found that tai chi was more enjoyable, there was a social connection and they could practice it at home by themselves with their family and friends.”

The great thing about tai chi is that it can be done by most people in most settings.

Tai Chi for fibromyalgia in outdoor setting in China


I have done tai chi in the past, before I had fibromyalgia, and found it very calming. After reading this research I will be looking for a beginner's class in tai chi. How about you have you tried tai chi? I would love to hear.

Medical Information on Fibromyalgia

Medical Information on Fibromyalgia Jan and feb 2018
.
Here is the latest research and medical papers for Fibromyalgia in 2018. I hope you find something helpful here. Click on the title to be taken to the article.

Fibromyalgia and Risk of Dementia-A Nationwide, Population-Based, Cohort Study.
Tzeng NS, Chung CH, Liu FC, Chiu YH, Chang HA, Yeh CB, Huang SY, Lu RB, Yeh HW, Kao YC, Chiang WS, Tsao CH, Wu YF, Chou YC, Lin FH, Chien WC.
Am J Med Sci. 2018 Feb;355(2):153-161. doi: 10.1016/j.amjms.2017.09.002. Epub 2017 Sep 15.

Functional Magnetic Resonance Imaging Evaluation of Auricular Percutaneous Electrical Neural Field Stimulation for Fibromyalgia: Protocol for a Feasibility Study.
Gebre M, Woodbury A, Napadow V, Krishnamurthy V, Krishnamurthy LC, Sniecinski R, Crosson B.
JMIR Res Protoc. 2018 Feb 6;7(2):e39. doi: 10.2196/resprot.8692.

Fibromyalgia Among Patients With Chronic Migraine and Chronic Tension-Type Headache: A Multicenter Prospective Cross-Sectional Study: A Comment.
Leiva-Calderón A, Mayorga-Moreno RJ.
Headache. 2018 Feb;58(2):309-310. doi: 10.1111/head.13241. No abstract available.

Fibromyalgia Among Patients With Chronic Migraine and Chronic Tension-Type Headache: A Multicenter Prospective Cross-Sectional Study - A Response.
Cho SJ, Sohn JH, Bae JS, Chu MK.
Headache. 2018 Feb;58(2):311-312. doi: 10.1111/head.13246. No abstract available.

Serum cortisol levels and neuropsychological impairments in patients diagnosed with Fibromyalgia.
Barceló-Martinez E, Gelves-Ospina M, Navarro Lechuga E, Allegri RF, Orozco-Acosta E, Benítez-Agudelo JC, León-Jacobus A, Román NF.
Actas Esp Psiquiatr. 2018 Jan;46(1):1-11. Epub 2018 Jan 1.

Complex Regional Pain Syndrome After Distal Radius Fracture Is Uncommon and Is Often Associated With Fibromyalgia.
Crijns TJ, van der Gronde BATD, Ring D, Leung N.
Clin Orthop Relat Res. 2018 Feb 5. doi: 10.1007/s11999.0000000000000070.

Reduced frontal activity during a verbal fluency test in fibromyalgia: A near-infrared spectroscopy study.
Chou PH, Tang KT, Chen YH, Sun CW, Huang CM, Chen DY.
J Clin Neurosci. 2018 Feb 6. pii: S0967-5868(17)31654-5. doi: 10.1016/j.jocn.2018.01.030.

Chronic pain patients can be classified into four groups: Clustering-based discriminant analysis of psychometric data from 4665 patients referred to a multidisciplinary pain centre (a SQRP study).
Bäckryd E, Persson EB, Larsson AI, Fischer MR, Gerdle B.
PLoS One. 2018 Feb 8;13(2):e0192623. doi: 10.1371/journal.pone.0192623. eCollection 2018.

Ginger rhizome enhances the anti-inflammatory and anti-nociceptive effects of paracetamol in an experimental mouse model of fibromyalgia.
Montserrat-de la Paz S, Garcia-Gimenez MD, Quilez AM, De la Puerta R, Fernandez-Arche A.
Inflammopharmacology. 2018 Feb 8 doi: 10.1007/s10787-018-0450-8

A systematic review of precipitating physical and psychological traumatic events in the development of fibromyalgia.
Yavne Y, Amital D, Watad A, Tiosano S, Amital H.
Semin Arthritis Rheum. 2018 Jan 10. pii: S0049-0172(17)30481-X. doi: 10.1016/j.semarthrit.2017.12.011.

Benefits and Harms of Cranial Electrical Stimulation for Chronic Painful Conditions, Depression, Anxiety, and Insomnia: A Systematic Review.
Shekelle PG, Cook IA, Miake-Lye IM, Booth MS, Beroes JM, Mak S.
Ann Intern Med. 2018 Feb 13. doi: 10.7326/M17-1970.

Neurobiological features of fibromyalgia are also present among rheumatoid arthritis patients.
Basu N, Kaplan CM, Ichesco E, Larkin T, Harris RE, Murray A, Waiter G, Clauw DJ.
Arthritis Rheumatol. 2018 Feb 13. doi: 10.1002/art.40451.

High fat diet sensitizes fibromyalgia-like pain behaviors in mice via tumor necrosis factor alpha.
Tian D, Tian M, Zhang L, Zhao P, Cui Y, Li J.
PLoS One. 2018 Feb 14;13(2):e0190861. doi: 10.1371/journal.pone.0190861. eCollection 2018.

Medical Information on Fibromyalgia

Monday

Health check for Fibromyalgia patients


Health check for Fibromyalgia

Living with the pain and fatigue of Fibromyalgia is a daily struggle.

The WebMD health check - Fibromyalgia Assessment - can help by:
  • assessing your symptoms 
  • offering you treatment options 
  • helping those who are not yet diagnosed. 
So it can give you tips to help you cope with fibromyalgia and the good thing is that it is free and a simple online questionnaire.

You are rated on your health, well being and symptoms.

You receive information on medications available and ways to change your habits to decrease your pain. While the answers are quite a generalised response I feel that it is good especially if you are just diagnosed with Fibromyalgia, or unsure if you have Fibromyalgia or just want to check that there is not something else you could be doing to help yourself feel a bit better.

Start here.

WebMD wants you to know that their tool does not provide medical advice. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. Never ignore professional medical advice in seeking treatment because of something you have read.


HERE ARE SOME OTHER FIBROMYALGIA QUESTIONNAIRES that may be of interest to you:

Health check for Fibromyalgia patients

Tuesday

Simple stress management tips

There is inevitable and unavoidable stress associated with the holiday season and add this to a life living with a chronic illness, which usually means chronic pain, and the stress is compounded.
I am glad you are here and reading this and I hope you find something helpful and worthwhile to help you or a loved one cope with the added stress at this time of the year.

Remember to take care of yourself. 
The words self care make me cringe but we just must look after ourselves to even feel vaguely normal at the best of times so this is even more important now.

Whenever you remember take 3 deep breaths. Breathe in the good and let go the bad...
I do this whenever I get in my car to drive anywhere and at other times when I feel overwhelmed and it has become a helpful habit very quickly. It sounds stupid but just 3 deep breaths and I can feel the tension subside.

self care ideas

Choose to see the good stuff.
Try and stay on positive topics and with positive people. When I am feeling overwhelmed gossip and bad news and drama and negative talking really drags me down further. 

Laughing and humor and comedy shows make me feel good especially if enjoyed with others. In some strange way laughter reduces pain and allows us to tolerate discomfort.

Also listen to your own ‘self-talk' because often we can be in a habit of saying negative things in our heads that just add to our stress. This is unhelpful so try and realize what you are doing and change the tape you are playing  - instead of saying ‘I can't cope' say 'it's time to take a break' or 'calm down' or 'others can help do this too'.  


Nature and being outdoors really can be a breath of fresh air. Sometimes I am so low I don't want to go out and see people but I have found that going for a walk at dusk or at night is also a great way to rejuvenate. There is no one around where I live, they are all in their houses, and no bright sunlight (which does affect my eye health) and I feel better after just a 5 minute walk. It is also calming to look at the sky, the clouds, the stars and the moon and feel the breeze or even the gentle rain. 

Find your own joy.
Let go of the shoulds and the old traditions and do what makes you feel good.  Create new traditions that are simple and easy to maintain within your life and your capabilities. As an example, at Christmas do we really need to send christmas cards, when we can send a group email? Do we really have to have all the relatives over for lunch when we could make a new tradition of meeting for Christmas Carols at the local Christmas event or church? 


You might also find the following helpful:




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

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. 

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. 

Weight Gain: Why It's a Problem With Fibromyalgia, and What to Do About It ProHealth.com by Mark J. Pellegrino, MD. Discusses Decreased Metabolism, Hypoglycemia [abnormally low blood sugar] and diet.

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. 



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

Fibromyalgia Book Review:

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.

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, 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.

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.


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. The word started being used after Christine Miserandino wrote The Spoon Theory. In her story she uses spoons as an anaolgy 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. 

When your 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.

spoon theory explained

You’ll find this nickname, along with others, used by many people in 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, 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

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 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. 

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

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

Research Gate: Multiple Chemical Sensitivity Review

Thursday

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)

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. 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.

Fibromyalgia tender points


Fibromyalgia is 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. 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.
  • 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.
  • 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.