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Essay: ''My journey through diagnosis of fibro''

Elliewc has shared with us her story of diagnosis of fibromyalgia and how it could have been different if she would have been diagnosed earlier. The Essay is an entry into the international Edgard Stene Competition for patients living with musculoskeletal diseases. We wish Elliewc good luck and invite you to read her story: 

''Way back when I was some 20 plus younger than I am now, I started feeling quite unwell. I was working in an office with closed windows and air conditioning for the first time in my life and I found that I frequently ended the day with weeping eyes and headaches.  I blamed the air conditioning – and to this day, air–con still dries my eyes out.

 And aching legs. Which of course I put down the fact that I was on my feet quite a serious amount.

I started the day with my wonderful 3inch heels and ended in flats. Which at 5 foot and an inch or two, I hated. I loved my high heels and bought as fancy ones as I could afford. All sorts of colours and decorations. Our local high street had a shop which kept the shoes used in films and TV and I often bought there. I was very tired but as my day started on the 6.30am coach into London and I came home to 2 children under 12 with my husband (we were both working in the same office) I thought no wonder...

And I had IBS – and an imminent ulcer – not my first as it happens, but that’s another story.

And I was having problems with my periods - very heavy bleeding which continued without a pause just getting a little lighter now and then, and extreme cramps – which later resulted in an ablation and eventually an hysterectomy.  I thought the constant bleeding must be affecting me. It turned out I had everything except cancer in my womb area. Cysts. Fibroids. And Endometriosis. And now I was ‘forced’ into menopause as I had no ovaries left. And I began to have insomnia.

This all got worse and worse until one day I just couldn’t get out of bed I was just so so tired and fatigued. The GP diagnosed post-viral syndrome as I clearly didn’t have flu although I had all the symptoms except for the fever. The aching joints and limbs, the headaches, the tiredness.

After a couple of weeks of bed rest I managed to go back to work but really was still feeling very ill. So my doctor thought I needed to have some tests done. Thus began the years of tests – some intrusive, some not, but all very worrying.

The headaches could have been a brain tumour, so I had an MRI which came out OK. So that wasn’t the cause. And I still get headaches. But not migraines thankfully any more. And they tried that diagnosis again just this year as my headaches were constant and bad  – brain tumours seem to be a regular potential diagnosis! Turned out to be a drug reaction, luckily.

I have had lots of blood tests which always showed some abnormality. I had been to India, China and Mexico for my work some years before so perhaps it was a latent tropical disease? It had sat dormant but now was flaring up? I was sweating all the time. Not just at night. And this was very embarrassing in my work as sometimes I had to leave a lecture to try and cool down. My face was red and the sweat would drip off my neck, forehead and chest. They took my blood to the London School of Hygiene and Tropical Disease hospital for testing. But no, this did not seem to be the case.

[And  I still sweat at times especially when the weather is humid. Thailand proved to be a holiday too much due to the humidity we experienced. I went about with a t-shirt soaked in sweat from my chest up and all down my back. And a very red face.  The same happened in Turkey. People think I’m about to expire from heat-stroke and it certainly feels close.

The Fibro sweating is ‘interesting’ in the Chinese saying version. I also sweat when stressed or emotionally distressed. And it is remarkably easy to be distressed. Just packing a suitcase makes me very hot and sweaty. I am always worried about forgetting something – as I often do! Handkerchiefs. Underwear. Socks. Even pills.

Just walking fast will make me sweat and not because I am overweight – although I am. It is just the expenditure of energy. I can’t hoover. Not just because I sweat but also because it is too heavy to handle. My arms muscles have become very weak and hurt when I try to lift even tea-pots or water jugs. I went to the gym recently to improve my muscle tone and instead ended up with bursitis and an inflamed rotator cuff and, it also turned out, osteo-arthritis in my shoulder. So that was the end of that episode].

I recently read an article that suggests that fibromyalgia is caused by malfunctions in two chief body systems - the Autonomic Nervous System (ANS) and the Hypothalamus-Pituitary-Adrenal Axis (HPA). These two body systems are key in regulating the production of important hormones and managing stress responses by the body. Imbalance in the two body systems can lead to sleeplessness, lack of energy, higher pain sensitivity, mood changes, digestive problems and this would certainly support my experiences as shown above.

My next possible diagnosis was Sarcoidosis. I certainly had a lot of the symptoms. Even rashes. So I had more scans and X-rays, but nothing could be found that was confirmatory.

And what was causing the dry eyes and now mouth? I went to see an ear, nose and throat specialist at Wexham Park hospital – we were living in South Bucks at the time - who decided I had a problem with my salivary glands. They took a biopsy from my lips – which left a scar for years. The test came back inconclusive.

So a PET scan was next.

 I was made radioactive. And yes there seemed to be an issue with the salivary glands. Could they please take half my face off so they could take a biopsy of the gland under my ear? I refused this as I thought the dry mouth didn’t warrant this very intrusive surgery and was really worried about the scarring of my face.

In the meantime, my eyes had got so dry at night that I had to peel the lids off them in the morning. Which, according to my optician meant I was peeling off the top layer of my eyeballs - and no wonder I was getting lots of eye infections. Sjogrens was diagnosed by the eye specialist at Wexham  and fake tears were issued which I still use all day, and at night an even heavier version which covers my eyes with an oily substance such that the eyes don’t really open and you can’t see through them until it is wiped off. Although it wears off by morning.

But the oils from the fake tears means that I can’t really wear any eye make-up as it smears – especially my glasses.... my eyes also react to dust and pollen and heat and air dryness. So the little tube of ointment goes everywhere with me.

And my back was hurting – I had been having steroid and anaesthesia injections for some time by now at Wycombe hospital under the care of an anaesthetist who ran the pain clinic, and was being given some serous pain killers to treat the constant pain in my back – and my knee too. I had my first knee replacement at 50 in Windsor. Osteo-arthritis was beginning to take its toll on me.  And it seemed to be inflammatory.

And whilst I had left my office job, I was now working as a university lecturer. Full-time. Plus a second job as we needed the money. And I needed to take first a Masters and then a PhD part-time in order to ensure that I kept my job, as well as publish articles and books.

For each operation I had I took 3 months off work – which helped me keep up with my studies and writing. But I was getting more and more tired.  And depressed from the constant pain and tiredness which had taken away my very full life.

10 years had now passed since the first indications of there being something wrong apart from the osteo-arthritis. And still no firm diagnosis. And the doctors wondered why I was concerned and fed-up.

Perhaps I had ME? But no, this was ruled out. My symptoms were not ‘correct’.

Or perhaps I had some type of cancer? The most obvious was with my glands. So I was sent to a specialist unit to test for Lymphona. Non-Hodgkins seemed possible and even likely. The initial tests in an Oxford lab – yes, I was being sent round the country - seemed to confirm this.

 The stress was immense, but at least I completed successfully all my degrees and the kids finished uni and were getting well established in their jobs.

And for 3 months we lived with this diagnosis until the final tests came back clear. It was one of the worst periods of our lives.

And at this time we were in the middle of selling our house.  We were hunting for a new one too.

We decided to move into a ground floor flat in London with a garden and lots of space. And the all-clear from Lymphona finally arrived.

Clearly I had inflammation but what was it from? My blood tests always showed this, and other items in the results seemed off especially my white blood cells. Scans of my hands and the general swellings around my knees and and other joints, also showed this. My sedimentation rate was not normal. So my GP thought I might have Polymyalgia and gave me steroids to help with the dizzy spells and pain.

My weight ballooned. The 3 stone I had taken off for our son’s wedding, came back with a vengeance

My IBS was improving. Although I am still frequently constipated and have managed to catch food poisoning several times from bad fish so that now my stomach is very sensitive and have found that having caught noro-virus last year it has proved difficult to shift. However, many doses of a 450 billion bacteria probiotic  seems to have put the bacteria back in balance for the time being. But I still take the odd sachet when my stomach rebels and I have too much flatulence.

 A new GP in London agreed to send me to a rheumatoid specialist in Northwick Park hospital, who, after many months, sent me to another specialist in Hammersmith hospital. Yes I clearly had inflammation as all the tests kept showing, but he suspected this was actually an inflammatory osteo-arthritis and not Polymyalgia or rheumatoid arthritis as initially thought. He thought fibromyalgia was a possible cause instead. I came off the steroids. Slowly.

Finally. Some 12 years after my first symptoms I had a possible diagnosis. I ticked some 14 of the 18 trigger pain points and had so many of the other issues including insomnia, morning stiffness, and constant fatigue – some mornings I still find it hard to get out of bed – and have been known to go back to bed half-way through cleaning my teeth – not even having managed a shower. The consultant then definitely confirmed the fibro diagnosis. Some relief was felt although one wonders why it took so long. There is some issue of course with having osteo-arthritis alongside – a rather inflammatory and aggressive version, that it may have masked symptoms or misled diagnosis. There are interesting articles that seem to confirm that this may be the case.

It has been an interesting journey towards fibromyalgia treatment, as I then managed to get an allergic reaction on my tongue. It kept swelling up. What could be causing it? Finally the thought was a drug that I was taking to deal with pain flare-ups and which was sub-dermal. So that drug was nixed and another replaced it. My allergy specialist worked in UCL at the Queens Square building and in the wing opposite his consulting rooms were the complementary medicine consulting rooms. UCL has what used to be the Royal Homeopathic Hospital in its charge but is now the Royal Hospital for Complementary Medicine and it appears they treated a lot of fibromyalgia patients. One day, when attending the allergy clinic my fibro was extremely visible. I was sweating and fatigued and in such pain that the allergy specialist was very concerned. He recommended that I go across the corridor to see his friend Dr Fisher who was a homeopathic doctor specialising in fibromyalgia. So he wrote to my GP and I got a referral.

Under the care of Dr Fisher I was given homeopathic medicines. All of which made the fibro worse. Which they are supposed to, but eventually you are supposed to tolerate them. I couldn’t. But I also got acupuncture for the pain in my back and knees, holistic healing, aromatherapy and massages, and also my first mindfulness course under a psychotherapist. Who had trained in mindfulness with a Buddhist monastery. These complementary treatments were brilliant and I loved them all, but eventually the GP funding ran out and I was ‘struck off’ and had these treatments no more unless I paid for them privately through local practitioners. Which I now do. At least I have regular back massages and now reflexology. And I also attended an eight week mindfulness course over the summer and try to meditate most days using a great phone app called Calm.

My insomnia is very interesting now. My husband can recognise when it is going to hit. I yawn a lot. But not properly. And then I get restless body. Not just my legs. I can’t find a place to get comfortable. I toss and turn and wriggle. And then I move into the spare bedroom. And read. Watch TV. Listen to music. Anything but sleep until 3 or 4 or 5am when I finally doze off to wake up again some 2 hours later. Sometimes my nerves give me little pin pricks under the skin all over my legs and arms. Other times I go to sleep but it is very light. I don’t get down into the necessary level required for true rest. I toss and turn as when I spend any time in one position I hurt and so need to move. This can be as often as every half-hour. The reflexology helps with this, as long as I have it every 3-4 weeks. My Fitbit app shows that on average I get between 4 and 5 hours of sleep but rarely in any length over an hour, more likely less. I will then wake 9at least 3 times a night, and get restless between 15 and 25 times a night. So not a solid night’s sleep – ever. Very disjointed and more light than deep.

I also get burning hands at night. My palms feel like they are on fire. And this means I can’t sleep of course. I need to ice them. In fact I used to have very cold hands and now they are usually warm even though I feel the need to wear gloves more than other people. My finger-tips are swollen, warm and have pins and needles constantly as well as being red which is odd but as this never goes away I just ignore it.

The Fibro Fog really hit me just after we moved. I was so forgetful my husband thought I had early-onset Alzheimer’s, and even now as I type this I forget the words that I need and have to look things up. And yes, I have now retired as you can’t be a university lecturer when you can’t remember the right words in a lecture! Jim, my hubbie, put yellow stickies all over the doors reminding me not to go out without my keys, my travel pass, my purse, my phone and so on. I used to know the Latin names of every plant in our garden and now I no longer do, even though I chose every one as I love to garden. Not that I do much these days as I can’t stand or bend for long enough before I am in pain. I take a kitchen timer out with me to remind me not to be too enthusiastic. 20 minutes is more than enough and then some!

I get a lot of stiffness too and find it difficult to get up out of a chair if I have been sitting for a long period. So I do try and get up every 45 mins or so. And when we travel we stop the car so that I can get out and stretch.

Exercise is very difficult of course, and yet if I don’t move I will get fatter and fatter and that isn’t good for my joints. So my Xmas present to myself last year was a Fitbit. This helps me balance my steps. I have now also linked into an app which rewards me if I do more than 7000 steps with points towards such things as M&S vouchers. Though there are many days when 7000 is way out of reach... and I don’t aim for that every day. Alternate days at the most.

I find it difficult to do things such as shop for clothes in actual shopping centres. Even to just go and choose shower gel in a shop such as TK Maxx sets me off. The effort of trying to choose the right item in a sea of choices tends to make me sweat and get anxious. I have solved this by shopping with my daughter and a personal shopper in a department store. Someone else makes all the choices and comes back with a change in size if needed and your belongings are in a nice safe place and you are not in a tiny cubicle but a large space with room.  I am thus able to be more laid back and to enjoy the time spent with my daughter and to see it as a fun mother/daughter outing rather than an intense struggle.  Which is why, of course, I do a lot of shopping online. My computer is my friend.

For many people with fibromyalgia the ability to go out and socialise is very difficult. I am lucky in that I have a very supportive husband and a great relationship with my daughter. She is my sounding board and my emotional support network. I don’t need to rely on forums although they are very useful to know that other people are struggling just like you.

My daughter, as it happens, also has fibro but a milder version than mine. And she is also a Clinical Psychologist! So I get my therapy straight from her! She has scleroderma also which makes her life very limited too so when we go out together we are in sync with our tiredness and need for constant coffee shops and bed rest in the afternoon.

Our regular chats – several times a week – are a lifeline to lift any depression I might have and to talk things out and moan and think about solutions. And to understand why I need to use Mindfulness to relax and get me into the now rather than thinking about the past, or the possible future.

She is also the reminder to try and eat healthily to help with my weight problem.

Like so many people with limited mobility and an illness that often leads to depression, I eat to comfort me. Always nice sugary food. A cream éclair always goes down well or a doughnut, or... though I’m not really a chocolate eater. There are articles that suggest that will power is affected by stress and anxiety. The more you are stressed, the more you will comfort eat. And the weight piles on. As people complain when told to lose weight when they can barely move off their bed, they are never realistically told how to do this. My current diet is the Low Carb and higher protein version. I did lose weight but then once in a wheelchair for some weeks put it back... so starting again.

One problem I have is telling when the Fibro really started? Was it when I was diagnosed with post-viral? Or was the fatigue a side effect of my bleeding problems? Clearly constant bleeding was going to tire me a lot. But were the menstrual pains partly Fibro? Chicken and Egg?

And what about the pain?

Well, I certainly do have osteo-arthritis in most of my joints. And now my shoulder surgeon at UCL Mr Lee (yes a potential arthroscopy is being discussed), says I should see a rheumatologist (again). And I have asked for a GP referral back to UCL for this.

The osteo-arthritis means that I have had 4 knee replacement operations after several arthroscopies.  Additionally, I have osteo-arthritis in my hands. And at some point may need a thumb joint replacement. But not yet thankfully.

I have it in my feet and am just recovering from a second foot operation with Mr Youngman at UCL to correct it. My big toe is now rather shorter than it was...

 I have it in my back facet joints and have degenerative disc disease and some spinal nerve stenosis, and my sciatic nerve is compromised by a bulging disc, and some scoliosis too. The specialists at UCL are not going to operate – it took them 2 years to decide this – but apparently anything they did would just result in further problems so better to leave alone and I must cope with the pain.

In fact I have had 19 operations so far in my life under general anaesthetic and surely that must have compromised my body in some way?

The pain clinic consultant – Mr Allibone at the Royal Free Hospital - says I have Chronic Pain Syndrome and so I live with morphine as my friend. So how can Fibromyalgia not be a logical outcome of my health issues? One pain consultant I saw at Paddington hospital said the pain would have brought on fibromyalgia as a secondary problem for sure..

 I have trigger points too on my right leg where a nerve was damaged by my last knee surgery 2 years ago and I am still having those treated by a physio (Helen Harte) at Stanmore Orthopaedic Hospital as she is a specialist in treating this.

The fatigue is constant. I try to create a ‘well’ of energy by resting regularly. By timing activities. By pacing. By changing activities. But frequently that ‘well’ is empty and I just am so sore and depressed by the constant need to ‘try’. Everything takes energy and that is in short supply.

Would an earlier diagnosis have helped?

Clearly it would have during that 10 year period where I was beset by tests and false diagnoses and the worry attendant on the possibilities being suggested. It would have helped me make sense of what was happening in my body and would have enabled me to be put on the correct drug regime sooner.  I would have learnt earlier about the importance of pacing – which is something I still struggle with despite my Mindfulness courses and practice!

What would my ideal situation now be?

 Well perhaps I would have free medical access to some of the complementary treatments that clearly help - such as the massage and reflexology which helps me to sleep better. I ensure I have a good regime of vitamins which we check against trials and articles in the journals ourselves. All of which is costly but luckily we can afford it.

I would have a local group or even a group of patients at a hospital that I could meet with and discuss issues and gain reassurance, and know about what they are trying and how it is working. Linking up online is just not enough.

 But mainly, I would have a consultant who is a Fibromyalgia specialist, leading a research team, with specialists linked in but part of the group at the same hospital, so that I could be seen as a total human being rather than one with:

·                 a knee and foot problem with Mr Youngman at UCL Euston Road;

·                 a shoulder problem with  Mr Lee at UCL Euston Road;

·                 a pain problem with Mr Allibone at the Royal Free Hospital;

·                 a back problem Mr Lee (different Lee) at  UCL Queens Square;

·                 a nerve damage problem due to Fibro trigger points developing after surgery, Helen Harte at Stanmore Orthopaedic hospital.

·                 A GP (Dr Redrado), who looks after my other medical problems such as the high blood pressure caused by the medications..

·                 and so it goes on.

The joined up care for me is carried around in my fibro fogged brain – as I pass on letters and details from one doctor to another to another. Including carrying the results of MRIs and other documents  - when I remember.

But compared to many I am doing well. At least I have the NHS and free drugs and a GP prepared to listen when I say I need a referral. And doctors who believe me when I say I am in pain and try to help. And a support network and now, charity work locally which I love with a great team of people and of course, access to the Internet and books!''

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