A Pill for all Problems!

If there’s one great thing about being in the medical field, it’s that there’s has always been a long held silent code that many doctors don’t charge their fellow colleagues & physicians for their services. Not that a free consultation with my own neurologist only recently helped things very much!

Alarmed at the obvious progression of my own case, for which I now seem to be developing the good friend of CSF, fibromyalgia, to my list of problems, I scheduled a visit to this neurologist.

In my case, my fatigue was getting worse and worse. Less so flares and more a relentless steady progression. Add to that I have been experiencing the new symptom of persistent aches and pains in my feet, legs and lower back, I had resorted to taking analgesia to get me through the day in order to keep me working and proactive. Paracetamol helped a bit, NSAID’s didn’t and then I tried Tramadol.

Bang, pain gone.

Tramadol was the drug of choice for me. Aches and pains all gone and felt great. But here dear reader is the trouble with meds. First, tramadol is a weak opiate, a cousin of codeine in that regard. Taking this regularly doesn’t look good. Despite alleviating pain, it remains an opiate and that confers concern among physicians. Understandable I guess. Tramadol is roughly one tenth the potency of morphine, so it’s a pretty strong drug. I read recently that the UK want to reclassify it to confer it’s addictive properties. Along with benzos, these are the cocktail of prescription drugs celebrities get hooked on, overdose on and invariably eventually receive rehab for.

Like virtually any drug with “addictive properties”, the issue is dependence and that of tolerability. Dependence means you simply become reliant on the drug. Can be both psychological and physiological and causes problems when you need to come off. Tolerance is another issue whereby you need increasing doses to get the same benefit you were previously getting.

Both were happening to me.

From 50mg Tramadol, I was eventually hitting 200mg in one go. I took it hoping I’d eventually get an improvement over time from my pain but in recognising it wasn’t getting better, figured I’d need to look elsewhere whilst I kept taking it. Tried using amitriptyline but didn’t help much. Mornings I’d still wake up achy with my joints & muscles all incredibly stiff and crampy. I felt like I was a 90 year old who’d just run a marathon the day before!

So enough is enough I thought! This pain and fatigue cannot be normal and I need it getting sorted. My gut feeling was that there was a likely metabolic component to all of this, specifically that of the muscles. So off I went to see the neurologist.

Now, most of you with CFS and/or fibromyalgia have likely grown used to the skepticism one encounters over time with the medical profession. I know I’m tired of telling them “No, I’m not stressed at the moment!” , “no, I don’t think it’s psychological”. So, every new encounter with doctors, of which previously would have been associated with hope for the future, now eventually comes to be replaced with a rapid disillusionment.

My neurology review lasted about 15 mins.

“Can’t find anything wrong with you!” I was finally told. He didn’t come out and say it’s CFS or fibro, but his main recommendations were to stop the tramadol (got a very suspicious look for that) and to get back to an exercise programme and mindfulness.

Accustomed to such empty gestures, I thanked him and packed my things and left.

I guess part of me always wonders if there is a magical disorder they will eventually diagnose me with. One that has a definitive and proven treatment. But it has been a fruitless search over many many years. CFS and fibro are essentially disorders of exclusion, often diagnosed when everything else is ruled out and if you fit the criteria.

Great, so I don’t have motor neurone disease but if it’s CFS, what can I do about it? Plough $1,000 in unproven treatments like GCMaf? It amazes me that neurologists and rheumatologists know so little about these disorders, let alone the sense of dismissal these labels tend to confer.

I have seen a CFS specialist before and they do have a far better grasp on the disorder and treatment options. But even when it comes to treatments, it is often a quasi underground movement, browsing various forums for others’ experiences and what worked for them or not. How does one make sense of it all?

Well, that is an area I would like to discuss in my next post.

Until then dear reader, I wish you all the best!

——————-
Dr RT

The Endless Search for a Diagnosis

For a lot of people, CFS is a relatively non-progressive illness. Estimates have been put out but vary around the 10-25% mark of those that have a progressive form. These folks end up being largely bed bound with significant morbidity and reduced quality of life. I’ve increasingly considered myself in this category and its a desperate struggle facing up to the realisation you have something which is going to get worse. I often think, “What will I be like in 2 to 5 years!”

Being a doctor and knowing, let alone encountering, many progressive illnesses means I have always been on a crusade to try and determine if I have an alternative diagnosis other than CFS. This is driven in part by a desire to resort to some treatment which may halt this incessant slide into hell which can encompass CFS. I’m sure many feel the same.

The disorder is one of exclusion, a syndrome identified by a variety of signs. There are many of these in medicine and they can be a tough bunch to identify and many patients are reluctant to accept such a diagnosis. “Surely there is something wrong & can be fixed!” goes through my head fairly often when I’m going through tough periods!

My own experience is that a CFS diagnosis and treatment is a dead end unless you have access to specialist centres. To that end, I have tended to take investigations into my own hand. I recently performed a barrage of blood tests given my ongoing decline. This is a big no no in medicine (self-diagnosis and treatment) but I figured to hell with that. Of my results, a few came back abnormal. Specifically a high LDH, Anti-Jo1 and ACE.

LDH (or lactate for short) is a marker for ischaemia/illness. Leg cramp is caused by elevated levels and is due to an alternative pathway in energy metabolism. Mine was above normal so jumping to conclusions, I assumed that this was due to some muscle metabolic issue. Lack of the ability to make energy sure fit in with everything. My muscles have been cramping and becoming increasingly sore for about a year now. To the extent that I need pain killers to get through the day. Joints feel stiff and its a horrible feeling. This blood test was the first time I could point to something and go, finally! Something objective to prove something isn’t quite right!

Anti-Jo 1 is an auto-antibody. It’s often encountered in polymyositis. Specifically, a subset called anti-synthesase syndrome. This has been high on two occasions both one year apart. Aha I thought! It all makes sense now! Here was an alternative diagnosis to CFS, an illness characterised by muscle myalgia and weakness. There was only one small problem. It’s an inflammatory condition and my inflammatory markers were completely normal. Another blood test called CK (creatine kinase) is also often raised and while it was modestly raised, it was nothing close to the level you’d expect. But nonetheless, hope shone through as I thought I might have unearthed something that at least had a shot at treatment.

The last abnormal blood test was ACE. Some may recognise this as a test used for Sarcoidosis. Not the most sensitive or specific of tests but certainly an avenue worth exploring.

Showed these results to my GP who agreed to refer me to a rheumatologist. She was a professor of Medicine & known as being one of the best at what she does. Appointment was in 4 weeks. In the meantime, I did another no no in medicine. I decided to try treat myself for what I considered was an underlying immune related disease. Both Sarcoid and polymyositis are often treated with steroids so figured why not give them a go. Felt I had nothing to lose at that stage. So off I went, got a fairly high dose of steroids and started munching them like smarties!

Now steroids are a great drug at calming an overexcited immune system (especially for a short course) but they are also one of the worst. A huge number of side effects exist and are often the reason they aren’t the preferred choice for a multitude of illnesses, certainly long term. But undeterred I carried on. I figured to hell with waiting for appointments and dubious doctors, let’s see if this makes me feel any better!

And for a few days, it actually did. But like many things, unfortunately it didn’t last. I took them for about 3-4 weeks, starting with a high but decreasing dose. I blew up like a balloon with the weight gain but figured this was a small price to pay for any improvement! Problem is there wasn’t truly any improvement if I was being really objective about it.

When I finally saw the rheumatologist, i was very hopeful. There’s something therapeutic about seeing any medical specialist. Been down that road many times however and invariably they tend to lead to disappointment. Was scolded for starting the steroids as was to be expected. She mentioned possibly doing an MRI but wanted to see me back in 4 weeks once I was off the steroids & with a chest X-ray (looking for sarcoid) and blood tests. She’d been quite cordial and seemed to take the fatigue etc all seriously. So off I went with a view things might get investigated properly for once.

Four weeks later, I was sitting opposite her again. She seemed a little more rushed this time. Blood tests came back all normal, my anti-Jo1 was negative and the other tests I had done which were high were normal. Chest x-ray was normal. I was now feeling that all too familiar sense of dismissal. She basically said to get back to exercising and that there was no organic disease. Medicine is a small community and there is always a fear you can get labelled as a someone with psychosomatic problems. Thus I wasn’t going to push things further. Thanked her and was on my way.

The experience of seeing many specialists i’m sure is one many of you are familiar with. The dreaded it’s all in your head often follows and I’m not immune to it. There comes a stage however when you get jaded at pursuing a diagnosis, despite knowing that the more likely nothing emerges, the more likely it is CFS. But with a pretty considerable level of medical knowledge comes the ever present rumination on whether it could possibly be something else. Many tests are good at screening for issues but nothing is infallible. So I’m back at square one. It would be something if my symptoms were stable but the progressive nature and in particular the increasing pain does alarm me. I feel myself becoming an increasingly reclused individual, staying home and resting up to preserve what energy remains. Not a great quality of life for those that are in the same boat.

The question remains, where do you go from here? The pursuit of a diagnosis when you have CFS is often a futile one. Results always come back normal. All you have to go on is devastating symptoms despite looking like the picture of health! I have had access to a lot of specialists in 10 years and all have ended in nothing. Very few even suggested CFS. That’s likely changing as the disorder becomes more familiar to physicians but it’s still a dead end for a lot of us.

How is your experience? Do you still pursue possible diagnoses or have you accepted what you have is CFS and have learnt to manage or deal with it as best you can? It would be interesting to hear your valued comments as ever.

Until next time

DT

The Pain of Heartache & Breakup

      I haven’t been online in a some time due to a number of events but the most hurtful of these has been the personal difficulties in my life that came to a head last week. It is a common one but I guess it hurts all the harder when you face a disability such as ME.

Six months ago, I met a most beautiful individual who had something special from the first time I met her. We just clicked. From the first date, we got on great, sharing a similar sense of humour, areas of interests and were able to talk for hours on end. As a shy introvert, I have never really been great on societal niceties but things were incredibly comfortable with this girl. After a few dates, I realised more and more that there might be long term potential with this person as she brought happiness to a life left devastated by ill-health. Of course, I kept my health problems to myself, resting as much as possible before going out and so on. By and large, I can confidently say it didn’t present a major obstacle in the development of the relationship which for many single people with this disorder can always present a fear or challenge. I always would have disclosed my disability at some stage but I rather let the other individual get to know me in the beginning as me, and not me in the context of ME.

I am effectively one of those emotional beings that yearns for a family and a settled life. Having been in a long term relationship that lasted over 4 years, I was with a kind angel of a partner. The only problem was that while I loved her, I simply couldn’t see us getting married etc. It was a case of almost there but not quite. Maybe some of you have been in that situation, it was a relationship of convenience but not bringing me much in terms of fulfillment. If any of you have every been in that situation, you may know what I write. I didn’t want to settle and ultimately chose to end this relationship in a very amicable way as I believe they should all be done with cordial healthy relationship.I have always tried to do things the right way given you cared and shared so much for that other partner. It was easier as we have never fought or had arguments.

 Months and months later, I met this other girl. As said, we got on great and I could talk and laugh about anything that would come to mind. Our first date became date 2,3,4 etc until we were flat out a couple. I find love one of the greatest means of helping those who suffer with ill-health for many reasons, it both takes your mind off your own problems for some time and there are supports in place if the other partner knowns of your limitations. Let alone the happiness and romance that can lift the spirits associated with romantic companionship.

In my case, I chose to conceal my difficulties until I felt she would have an appreciation of who I am as a person, a human being and what I believe to be a kind loving soul. She was a bit of a commitment phobic, so meeting friends would have been a big deal etc. Though we eventually got to that stage. By and large, we got on great, discussing our lives and hopes and aspirations etc. Some red flags raised there head though in that she was never pushing to do things like go on a weekend break due to the “significance of what that would mean”. I put it down to her committment fear. After all, after only a few months, I was her 2nd longest relationship.

Calling in unexpectedly to her house recently when we were due to go to the cinema that evening was the beginning of the end. I work 10 mins away so figured I’d pop over to hers and could decide there what we’d go see etc But she was offended I would call in with so little notice and flat out refused to let me call in. I was shocked and said are we must be on different wavelenghts in terms of how we both view the relationship, I simply didn’t see what the big deal was when we were planning on doing something that evening. The thought that someone else might have been there hardly even crossed my mind. In anger, I said maybe we should just leave the cinema tonight but in the end met up. When meeting 30 mins later, I downplayed everything and didn’t want to make a mountain out of a molehill and we got on great at the cinema, holding hands and going for a long walk afterwards. We agreed we’d meet up early next week. That evening, I apologised for peace’s sake for the earlier conversation, She said we should discuss it but really liked me etc. 3 days later, I received a text telling me she wanted us to go our separate way, Ringing her, she said it was over the wed episode and how this must be part of my character to get worked up. We agreed we’d meet the next day but she cancelled and said she’d rather not me. Dumped by text and then no decency to at least meet me face to face for some form of closure. Despite multiple attempts at trying to determine genuinely what were the reasons, they suddenly began to change to “we were not suited” as far as she was concerned etc. “

For anyone who has experienced a true unexpected breakup, some may empathize that my world was shattered.  I couldn’t explain it, we had been getting on so well, had recently taken her to a spa weekend in a lovely hotel and had plans to go to London together. There was never any signs of discontent until Wed, nor any fights. during this entire time. Her main concern was just taking things slow. We all seek reasons for the rejection but in the absence of any obvious signs, it is always difficult to move on. Honestly, they will likely never have specific reasons, they just fall out of love or realize you simply aren’t for them. Tough though when you felt the exact opposite which now makes me think was i completely deluded.

It truly is amazing how one person you love can just transform themselves overnight into a different person with no warmth or consideration for others with whom you’ve shared so many special moments in time with. I suspected someone else was involved due to the sudden shift in coldness and dramatic declaration but she denies the involvement of her ex or anyone else in coming to this decision. One can only assume this is true but I do have my doubts.

Regardless, a relationship that brought me such joy and with someone with whom I thought for the first time in my life really had the potential for something long term, is left in crumbles beneath my feet. For those that are single, the energy needed to try date and go out etc is so tiring and challenging so when you finally find someone you fall in love with, it is like a little reprieve from the card that God dealt us all with ME. It is hard to imagine returning to the dating cycle etc,

My motivation is gone at present, one’s self-esteem takes a knock, but time heals all things and hopefully I’ll be back to myself in due course. The issues are ultimately with the other person who chooses to focus on one or bad qualities and ignore all the good ones, but it doesn’t really make things all that much easier,

Tis a long rant and hope I haven’t bored too many of you, my situation is one of millions that occur all the time but like I said, it doesn’t ever really make it any easier.

If only there was a great cure for a broken heart!

Anyhow,

Till next time,

Dr RT

CFS/ME: Specialities, Treatment and Miscellaneous Thoughts

One comment came from Douglas who encapsulates a lot of what people who develop this disorder will experience.

Classical type onset, viral infection followed by manifestation of the disorder. Thus, follows the endless barrage of tests followed by further endless and often fruitless consultants from various disciplines until eventually a diagnosis of CFS is perhaps made.

Here’s my own experience and opinion. The bottom line is that the vast majority of physicians (I’d estimate around 99%) have virtually no or very limited experience and understanding of CFS, let alone ME. It is not taught in medical school (in fact it was never mentioned in the 6 years I undertook in undergraduate training.) I have never come across a patient with this condition in hospitals and unless you have access to specialist centres (a rarity let’s remember to most), are unlikely receive a diagnosis, let alone effective treatments. As far as I remember, the CFS centre in Kings College London still recommend CBT and graded exercise as their main treatment options. One must remember that around 99% of patients with this disorder likely get treated under primary care with limited exposure to hospitals, let alone admission (I have worked in ED for a year and never had one patient admitted with such a disorder). Most of you reading this will have pursued referrals to specialists but they will investigate what they are familiar with and once they have exhausted their usual battery of tests, will re-refer or perhaps give you a diagnosis of CFS as a last resort.

The ME association in the UK has tried to provide information packs to primary case physicians in a boost to educate them on this condition but it just goes to show there is a lot of ground to make up on.

Truth is, despite all the emerging research, we are still not really closer to knowing the cause of this disorder. Yes, we know without a doubt there is a likely combination of trigger factors, something is definitely going on that is pathologically wrong, but even these signs (usually discovered under research conditions) points to a lot of different mechanisms without one single common pathway. Is this a neurological illness, a myopathic one, an immunological one, or as evidence demonstrates, probably a combination of all of these and more.

We and many others are in what I like to call in a grey area of medicine. Simply put, most physicians don’t have a clue how to recognise, diagnose and treat this disorder. Analogous to this and particularly for those unsure of a diagnosis of CFS/ME, you will likely waste a lot of your hard-earned money, particularly in North America where the cost can be excessively high, pursuing what you probably believe is an elusive diagnosis waiting to be uncovered with the lure of a potential cure. I have been down this road for 10 years and as a physician, I have had access to a ridiculous amount of blood tests, referrals to specialists, radiological and endoscopic investigations. Even CFS specialists will have their own take on treatments eg targeting inefficient energy mechanisms or dysfunctioning cell lines but there are no large-scale studies to show any benefit from ANY treatment. This may change as we make inroads but progress is slow and funding for research remains low compared to many other disorders which affect vastly smaller populations. Furthermore, a lot of research has been performed under small-scale groups with often poorly defined criteria and don’t at this stage contribute to any potential treatment.

Remember, this is a syndrome and is diagnosed by meeting the criteria as per Carruthers et al (2011). As I’ve already said and this is my own personal opinion (and many will disagree), I don’t believe you need to meet all these criteria to suffer from what in my personal opinion is a likely common pathway of disease. I see this as a spectrum of disease. ME is simply the end-point or the most severe manifestation of the disorder. This group has further pathological and genetic changes which destroy their quality of life and drive many of them to be house or bed-bound.

Traditionally, graded exercise and CBT were the only recommended options under NICE guidelines but CBT has shown little difference and ME patients will be in uproar over graded-exercise as current best evidence suggests this simply makes things worse. So we are left with anecdotal evidence or possible small-scale studies with which to pursue.

Some will travel to San Francisco to see a certain physician who will treat them with IV infusions of rituximab. A course of treatment costs over $6000. I don’t believe this is ethical given little evidence for this to date. We need replicated and larger scale studies (compared to the Fluge & Mella’s Norwegian 2013 one that made a tentative association between CFS symptoms to B cell abnormalities). Phase 2 trials are underway if I remember correctly with the possibility of Phase III trials so I will await these and the overall design study in general.

On a positive note, we are making steady progress and with more clearly defined cohorts and supported by double-blind placebo controlled groups, I have no doubt we’ll get to the bottom of a multi-aetiological disorder with the hope of proper effective treatments. We all want a quick cure but patience will be key!

All the best,

Dr RT

CFS & Work

Home from a long day of work today. First port of call, bed! Can’t really beat the comfort of putting ones legs up and relaxing. Muscles as usual aching like mad mixed with that ever present feeling of fatigue & weakness. My myalgia has been progressing far worse in the last 6 months and I have fewer periods of remission these days. Funny enough, I feel it worse when I am not active, perhaps a variant of post-exertional malaise as I am on my feet most of the day. I have a progressive form of CFS/ME, though retain at present a reasonable level of functioning.

I recognise I am in the minority of patients who continues to work full time. As a physician, you can imagine that it is also fairly taxing! Many have had to abandon work or try as best to work on a part time basis. Some have trouble simply trying to support their family. For the last 6 months, I have begun to question for the first time whether full time work is a realistic option for the future. Unfortunately like many places of work, this is simply not an option for hospital based medicine. I have made moves to switch to family medicine and working in the community as this lends itself better to part time work and one has to be realistic about one’s limitations. There is such a lure to stop pushing ourselves in trying to overcome our increasingly disabled bodies but I feel if I do stop, I know in my heart I would be unlikely to return. This is both from a personal and professional position. Hospitals etc simply don’t like gaps in ones CV’s and CFS/ME would be frowned on and treated with the same level of scepticism that all of you are so familiar with.

I will touch on this frustrating dismissive attitude and physician awareness of CFS in my next blog. I have a fair few anecdotes! As always, comments are welcome and I will do my best to reply as time permits.

Wishing you all the best,

Dr RT

As an side note, I am new to blogging and would appreciate if anyone could tell me if google will index this site? It would be nice to reach as large an audience as possible and I guess google is as good a place as any!