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.

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.


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


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.


Tramadol for Fibromyalgia

personal story of Tramadol for Fibromyalgia
    • Tramadol is an Opioid Analgesic which is prescribed for 
    • moderately severe pain.  It works in the brain to change both 
      the perception of pain and the response to pain. 
When I started taking this medication it was explained to me that it needed to be taken at a regular time once a day and that I would probably have nausea at first for about a week and to make sure to take it with food. I did as prescribed and sure enough I had nausea for one week and then it subsided. 

I used Tramadol regularly for a long time and it did relieve the pain and helped me to lose a little weight but it also helped me to lose interest in life.  The main reason I lost weight was that I had no interest in food or in cooking or in looking after myself. I became like a drug addict but did not realise it. One day after about a year my daughter said she felt like she had lost her mother - she cried and said I was behind a cloud and she could not get to me. This made me realise that I was just sitting on the lounge all day doing nothing and I decided to stop taking Tramadol. 

At this point I made a very foolish mistake and decided to go cold turkey. OMG I experienced 7 days of extremely bad withdrawal symptoms the worst of which was the muscle pains and irritability. There was also watering eyes and a runny nose like a bad flu, nausea and sweating and shaking all over. These are all known symptoms if you suddenly stop using this medication but obviously, because of the drug itself, I was not thinking right when I made the decision to just stop taking it without consulting my doctor. He would have told me to come off it slowly in increments. 

In retrospect I could see that the Tramadol was causing major drowsiness in me. When it was completely out of my system I realised that many of the symptoms I had started taking it for had gone - that is the nature of Fibromyalgia, I think, it changes all the time.


Cyclobenzaprine for Fibromyalgia
My muscles feel like they are being clenched all the time, especially the muscles in my upper arms, buttocks, thighs and calves. This is a feeling that rarely ever goes away except when I am in warm water at a temperature of 33 to 35 degrees or I am having a massage.

My muscles sometimes go into spasms like cramps and this is especially bad and immobolizing when the larger muscles are involved. One day I stood up but could not move for about 15 minutes due to pain in my buttocks. This has happened 3 times now. It was quite frightening the first time but now I understand what is happening, at least.

 My muscles are in pain, even as I sit here on a comfortable lounge writing this. My wrists and forearms ache from typing and my legs are just in constant pain. I also get restless leg syndrome quite often where my legs are so irritated I cannot get to sleep. The best way I can describe it is that they feel electrified.

I am explaining all this because I have just heard about a medication used in Fibromyalgia for relaxing the muscles called Cyclobenzaprine. It's brand name is Flexeril and I don't understand why it has never been recommended to me by a doctor as it seems to cover these muscle symptoms. As a matter of fact I have never been prescribed any of the muscle relaxants:
  • Cyclobenzaprine (Flexeril)
  • Methocarbamol (Robaxin)
  • Diazepam (Valium)
  • Carisoprodol (Soma)
So on first investigation Cyclobenzaprine gets a good rap:
Cyclobenzaprine has also shown effectiveness in the treatment of fibromyalgia symptoms, with a report of 4.8 patients needing treatment for each (1) patient reporting pain reduction (but no change in fatigue or tender points). Conclusion: Cyclobenzaprine-treated patients were 3 times as likely to report overall improvement and to report moderate reductions in individual symptoms, particularly sleep. Treatment of fibromyalgia with cyclobenzaprine: A meta-analysis
On further investigation many people suffer side effects from Cyclobenzaprine which can range from headache and a tired feeling to dizziness, drowsiness, trouble concentrating, blurred vision, dry mouth or throat, altered sense of taste, nausea, upset stomach and constipation. In elderly patients it can cause confusion, delirium, and cognitive impairment according to the Duke Clinical Research Institute. (PDF)


Natural Treatments for Fibromyalgia

Natural Fibromyalgia Treatments

I love natural treatments for my fibromyalgia because not only can they help they usually do no harm. Some people call them alternative treatments or complementary treatments for Fibro. I must say I am someone who is very sensitive to medications and that I usually suffer bad side effects so finding treatments that help relieve some of my fibromyalgia symptoms, without any bad side effects, has been a priority for me. 

It has taken a while to work out which of these treatments works for me and I suppose the main drawback is the cost. I look at it as an investment in me, my well-being and my health... after all if I don't look after myself who will?

So here is a list of the many natural treatments I have written about. I hope you find them useful. Just click on the one you are interested in to be taken to the article.

So I would love to hear if you have tried any of these fibro treatments and if they helped you. 


Neurontin and Lyrica for Fibromyalgia

gabapentin vs pregabalin for Fibromyalgia

In the past, when I first was diagnosed with Fibro, I took many different medications to try and reduce my symptoms of pain and fatigue and numbness and tingling. Neurontin and Lyrica were just 2 of the treatments that my rheumatologist prescribed at different times. I have put them together, in this post, because I now know, that they are both anticonvulsant drugs or anti-seizure drugs.  Neurontin is also called gabapentin and Lyrica is also called pregabalin. 

Neurontin (gabapentin) was made to treat epilepsy but is now used to treat fibromyalgia and other types of chronic pain. It is used to treat neuropathic pain which I had in the form of the tingling and numbness in my fingers, hands, toes and feet. It is not possible to know whether Neurontin will help you or not before you start taking it. Apparently it helps 4 out of 10 people reduce their pain by half according to a clinical trial run on 5633 people with Fibromyalgia. There are a few side effects and I experienced one of them which was dizziness. 

Now dizziness may seem very slight to some people, as a side effect, but it made life very difficult, especially driving.  I also experienced nausea, even when taking the tablet with food. The good news was that the tingling and numbness did stop initially, which was very exciting after living with it for many years but after 2 weeks it came back again. The suggestion was to increase the dose but this also increased the dizziness and the nausea. By this stage i had gained weight and felt that my fibro fog was more constant.  In the end I chose to stop taking it because the side effects seemed to outweigh the benefits.

Both Neurontin and Lyrica are antiepileptic medications and overall they are quite similar but have a few differences: absorption of Neurontin happens in the small intestines and absorption of Lyrica happens in the small intestine and in the ascending colon as well and is more quickly absorbed.  

Lyrica (pregabalin) is also a drug that targets nerve pain and I remember on the first night I took it having no pain and an extremely good sleep. This was exceptional as I had been in pain every day for years and also having difficulties falling asleep and staying asleep. Little did I know that the daytime drowsiness would not go away and the lack of pain only last 3 days. They were 3 days of bliss though and I remember going around the house saying "the absence of pain is bliss." Sadly the dose had to increase, the drowsiness did not subside and I started to get blurry vision all of which meant Lyrica was no longer my best friend. 

YOU May also be interested in these articles:
Duloxetine in patients with Fibro 

Opoids and Fibromyalgia

Fibromyalgia medications list


Acupuncture lessens pain intensity in Fibromyalgia

Acupuncture and Fibromyalgia

A study done by Dr Jorge Vas, at the Pain Treatment Unit, Doña Mercedes Primary Health Centre, Sevilla, Spain showed that individualised acupuncture treatment in primary care in patients with fibromyalgia proved effective in terms of pain relief.

In the study this was compared with people who had placebo acupuncture treatments. The good effects of these real, individualised, acupuncture treatments were still felt 1 year later and side effects were mild and infrequent.

Nine weekly sessions of individually tailored acupuncture lessened perceived pain intensity in people with fibromyalgia...  It also improved their ability to function in their day to day life and their quality of life.  Therefore the study concluded that the use of individualised acupuncture in patients with fibromyalgia is definitely recommended.

Have you tried acupuncture to help your pain symptoms? I would love to hear about it in the comments.

You may also like these other articles about Acupuncture and Fibromyalgia and Did acupuncture help your fibromyalgia?

Read more at BMJ
This article is linked at Fibro Friday


Sleep problems may predict later pain problems

sleep and chronic pain study
For at least some groups of 'emerging adults,' sleep problems are a predictor of chronic pain and worsening pain severity over time, a recent study suggests.

Sleep problems might be an important risk factor for increased pain, especially in young women.

This new study suggests that sleep problems are significantly associated with chronic pain and specific types of pain problems in  emerging adulthood which apparently is the distinct period between 18 and 25 years of age.  "Our findings indicate the sleep problems are not only a precursor for pain, but actually predict the persistence of chronic pain and an increase in pain levels," say the researchers. In addition, they conclude, "Our findings suggest that sleep problems may be an additional target for treatment and prevention strategies in female emerging adults with chronic pain and musculoskeletal pain."

Read more at ScienceDaily, 31 March 2016. Wolters Kluwer Health. "For young adults, sleep problems predict later pain problems."

Read more about sleep problems and fibromyalgia at the Fibro and Sleep board on Pinterest


Breakthrough Discoveries in Fibromyalgia Treatment

Innovative Med Concepts (IMC) is a biotech company with upcoming treatments for fibromyalgia and other conditions that are related to the disease.

IMC has designed a new way to suppress chronic tissue-resident herpes virus, which may have a role in triggering fibromyalgia or maintaining it's symptoms.  The new oral medication is IMC-1 - a fixed-dose combination using  doses of famciclovir, an anti-viral, and celecoxib, a COX-2 inhibitor that also possesses unique anti-viral activity. In previous clinical studies a significant decrease in pain was observed for patients on this combination of drugs and an improvement in fatigue levels.

IMC believe that suppressing latent herpes viruses may significantly improve fibromyalgia related symptoms and are beginning Phase III trials with IMC-1 in 2017.

According to Dr. William Pridgen, who ran the previous clinical trial, chronic tissue-resident herpes virus may be an underlying cause of fibromyalgia. Dr. Pridgen is Board Certified in General Surgery, a Fellow of the American College of Surgeons, and for nearly two decades has conducted research into the causes of chronic pain, IBS, ME/CFS, fibromyalgia, and other chronic idiopathic disorders. Before founding IMC, Dr. Pridgen treated thousands of patients with fibromyalgia and chronic gastrointestinal issues, and was determined to gain a better scientific understanding of the sporadic, unpredictable recurrences of his patients' discomforts. His quest for answers served as the catalyst for Dr. Pridgen’s viral theory, leading to his utilization of anti-viral combinations that consistently resulted in positive outcomes for his patients.

Read more at IMC


Fibromyalgia assessment

This questionaire is for people with or without a diagnosis of Fibromyalgia and is monitored by a doctor. You tick which symptoms you have and then receive free personalized information to get more tips for dealing with your symptoms.

Answer a few quick questions, and you'll get:

  • Information about fibromyalgia for those who haven't been diagnosed
  • Treatment options that best fit your symptoms
  • Tips to help you cope with your symptoms and improve your life
My personalized info included Medication suggestions and other ideas for improving my quality of life. I did not have to give my email address.
Get your own Fibromyalgia assessment at Web MD


Air Travel Tips

My tips for traveling by plane when you have a chronic pain condition

Since I’ve been traveling more by aeroplane I thought I'd like to share some of my ideas for traveling when you have a chronic illness such as Fibromyalgia.  Traveling is an extra stress on the body for most people but especially those with a chronic illness who feel that stress reverberating in their body for days after in a variety of ways. 

Getting ready for take off

My travel preparations start long before the day of travel and this ensures that I feel more organized and have everything I might need to add comfort to my flight.

The most important thing for me is making sure all my medicines are packed. So I check my prescriptions and purchase any I need before I leave. I also make sure I have enough of those medicines to take every day of the trip and then some extra ones. This is because of the time we were trapped in Fiji after a tsunami and could not fly home. Some of my medications are essential and not having them can put me into hospital in a foreign country which is usually costly, let alone scary due to the language barrier and different standards of health care.

The next most important thing for me is to have an aisle seat so now I overcome my frugal nature and book and pay for an aisle seat in advance. This is an investment in my health and well being and benefits anyone else who is travelling with me because I am a much better tourist, ready to join in and participate when I arrive  at my destination when I sit in the aisle seat. After much flying I have found that this is the best seat for me. I am the person on the flight that gets up and walks a lap of the plane every hour or so. I also like to go to the back of the plane and stand and do some simple exercises during the flight. No one seems to notice much except the other person who is maybe doing the same thing at the same time! All of this movement ensures less cramps, less pain and less stiffness in the following days on arrival at my holiday.

The Importance of Hydration
On the 3 days before the flight and during the flight and after I concentrate on hydration. I find flying extremely dehydrating internally and externally and get very dry eyes, dry throat and nose and constipation. I have noticed that all of these were reduced by drinking pure water and after learning about the benefits of good mineral waters I now drink around 10 glasses of water before during and after a flight. I try not to drink coffee, tea or alcohol as they are very dehydrating to me. I only resort to alcohol if I am in extreme pain on a flight that has not been reduced by pain killers.I used to get cramps in the nights after I flew, but now find this greatly reduced.

Vitamins and minerals that generally speaking make a difference to me are magnesium and 1 basic vitamin and mineral tablet a day. Over the years I have tried many supplements and found that they have not given many any great benefits except for these 2 that I try to take regularly. I was found to be deficient in magnesium so take it regularly and this has reduced cramping and some muscle pain. If I neglect to take my basic Vitamin and mineral tablet for a few days I start to get chipped finger nails so I figure if it is helping with that it is helping with other things.

Comfort extras

I also travel with my own small pillow for comfort and extra neck and back support. Although it takes up quite a bit of carry on space it is an essential travel item for me. It allows me to get some sleep and find some vaguely comfortable positions. It is light and squishy. 

I always take eye gel, hand wipes, a small packet of tissues and pain killers on the plane. I also pack medications for hayfever, constipation and diarrhea because it is so much easier having these available when you arrive than having to find them in a pharmacy. 

I have also invested, finally, in new suitcases that are the lightest I could find. Even if you are travelling with others, who will help you with your bags, there will be times that you need to lift or carry your own - even just lifting it out of the taxi or onto the conveyer belt can be stressful on muscles.I have both wheel on luggage for on the plane and in the hull now. The handles are the perfect height for me and easy to pull in and out. On short flights, or flights where I do not take much luggage, I now pay to put the luggage in the hull and walk on board with a very light bag. This is so good for reducing muscle pain and well worth the cost. 
I have at this stage never used the airport wheelchair but now understand that it is an option for anybody who feels they cannot walk up and down the stairs onto the plane.

I hope these tips for flying help you and would love to hear any extra tips you have or your experiences when traveling with chronic pain here in the comments.  

Explaining Fibromyalgia to Others

How to explain Fibromyalgia to Other people

Explaining a medical condition to others can be difficult - knowing what to say and how to say it is something that needs consideration. Having brain fog can make impromptu explanations even more challenging.

Most people don't have much understanding about Fibromyalgia and many people have misconceptions about it. Deciding whether to discuss your symptoms and how fibro impacts on your life depends on your own personal situation. Usually I feel that talking about it causes more problems than is helpful but I do think you feel very lonely if family and friends do not at least understand you have an illness.

If you tell someone you have fibromyalgia you get a variety of reactions from "what's that?" to "My mother has it!" If the conversation continues I find that they know the name but don't really understand Fibro or what their mother/brother/sister/ experiences. So if they ask questions then I explain...
I usually explain it as like having the flu, with the exhaustion and aching and moving pains, a flu that never goes away. I feel that most people have at some time experienced a flu and been laid low with it for a day or two and therefore they will understand this analogy. If they want to know more then I explain fibro fog as something that affects the memory, a kind of forgetfulness - forgetting words, names, conversations. When you are trying to explain your condition to family and friends be prepared for well meaning or not so well meaning comments, misunderstandings and doubting looks. Many kind people will give you suggestions to improve your condition so please realize they are just trying to come to terms with your struggles and be helpful.

Many people tell me they alter their explanation depending on who they are talking to and describe the condition to something that the person can relate to such as a severe hangover that does not go away, a migraine that is all over the body or jet lag that does not stop.
If you are looking for a short quick explanation to remember and say here are some suggestions to choose from:
"Fibromyalgia is like arthritis in the muscles." 
"Fibromyalgia is a complex, chronic pain condition that affects the brain, nervous system and the muscles." 
" Fibromyalgia is a central nervous system disorder that has three primary components - pain, fatigue and sleep problems." 
"Fibromyalgia is like a migraine all over your body."  
" Fibromyalgia is a chronic condition with widespread pain in muscles and ligaments as well as fatigue and cognitive dysfunction." 
"Fibromyalgia is a rheumatic disorder that causes muscle tenderness, pain and fatigue."

If you are looking for a longer, more in depth explanation here are some suggestions:
How do you explain fibromyagia to others?

Fibromyalgia is like a tree

This article shared at Fibro Friday week 66