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!