This has been a year of many referrals to specialists, which has resulted in a lot of hospital appointments. These referrals have all been made in an effort to find a way to manage some of my individual symptoms, and to rule out any cause, other than ME. I am very lucky that I have a GP who likes to see me every six weeks or so, and who takes my symptoms seriously. The previous GP’s and specialists I saw always brushed off any new or worsening symptoms as part of my ME. This of course is very likely, but it won’t necessarily always be the case, and we won’t know unless we investigate. This dismissiveness is what caused the delay in my Endometriosis diagnosis, and what put a halt to the bladder investigations. I hate to think that I could have had something more sinister going on, but, because of this attitude that many doctors hold about ME, it wouldn’t have been diagnosed until my autopsy! So I’m very grateful for my GP, I can always trust that she will take me and my symptoms seriously.
With all these referrals and various other things going on this year, I haven’t been well enough to individually update all the people who are regularly in contact with me, so again I decided to write a general update here, for those who are interested. It’s an exciting adventure from my brain and spinal cord, via my bladder and uterus, to my hands and my feet!
I saw my Neurologist again in November, the first appointment since I received my brain and spinal cord MRI scan results. When I first saw this Neurologist in May he said my symptoms were indicative of ME, and/or Multiple Sclerosis (MS). So the purpose of the scans was to confirm or rule out MS, and I guess to see if there was anything else visible that could explain my neurological symptoms. Well, as I kind of expected, my scans showed no abnormalities. So MS has now been ruled out, again.
I don’t know how I feel about that. Life with a MS diagnosis would be easier than life with a ME diagnosis, simply in terms of how each illness is regarded by other people. If I had MS, I would still be very unwell, but I could ‘just’ be unwell. I wouldn’t have to spend my time and energy educating people and putting right their misconceptions. But, if I had been diagnosed with MS, instead of ME, what would I do with my time? Currently the main that keeps me going – through the pain, the uncertainty, the loss, the grief, the isolation, the loneliness, the depression – is ME advocacy. I’m so invested in fighting for health equality for people with ME, what would I have done if I’d found out that I didn’t have ME? Ditch the ME advocacy and turn to MS advocacy? Except, MS doesn’t need the advocacy, not like ME does (MS, despite there being fewer than half the amount of people with MS than people with ME, gets considerably more funding for research). I expect I wouldn’t have been able to abandon my ME advocacy efforts, not now that I know what people with ME have to contend with – the misconceptions, the abuse, the neglect, the mockery, the lack of care, treatment and respect, and the chronic lack of both funding for biomedical research, and education for medical professionals. So, I would have been a person with MS, but advocating for people with ME, I would also have had to rename my blog, which would’ve been a pain in the bum, so I guess there is a silver lining in being stuck with ME.
I got to see my brain and spinal cord MRI scans, which was fascinating. I hadn’t realised just how tail-like the very end of the spine looks. Apart from a few signs of normal ageing, everything looks healthy. In fact, he saw fewer signs of ageing than he would have expected. So, I’m the most unwell I have ever been, I’m barely functional, but my brain (structurally) looks completely healthy. This was noted after my first brain scan in 2015 too, that it was an unusually healthy looking brain. Apparently most people have a few lesions, and above a certain number, it would be indicative of MS – I have none. My mum and I were discussing this after my appointment. Maybe the reason my brain isn’t ageing as would be expected is because of my ME brain fog, I do less thinking, and as a result, my brain looks younger! But I think it’s probably just down to luck, maybe genetics, who knows. I find it quite frustrating. On paper I’m the healthiest person ever, but in reality, my body is malfunctioning left, right and centre. I feel like I’m very slowly dying.
The most useful bit of the appointment was getting a name for my newest symptom, Myoclonic Seizures (non-epileptic seizures). They are fairly common in ME, especially severe ME, I believe, which makes sense given the neurological component of ME. There’s nothing I can do about them though, and unless I ever lose consciousness when it happens, they aren’t really anything to be concerned about. He did ask if I can try and record it on my phone the next time it happens, which I think might be a bit tricky.
Basically there’s nothing more he can do now. But I can arrange another appointment with him if I want to, to discuss worsening and/or new symptoms, or if I just want to speak to him about anything specific/neurology related. Given how most Neurologists treat people with ME, and my awful first encounter with a Neurologist in 2015, I think I’ve been pretty lucky this time.
I saw a new Urologist this year as well, which was prompted by the sudden worsening of my bladder symptoms in February. I had previously been diagnosed with Overactive Bladder Syndrome (OBS), but I was never quite convinced, the symptoms just didn’t match. The new Urologist seemed to agree with me, and said there was a test they could do which would confirm or rule out OBS, and again, the results came back normal, so I think that means the OBS was a misdiagnosis. Why the first Urologist I saw in 2014 didn’t do this test, I don’t know.
This doctor was also interested in the results of my MRI scan, specifically of the spinal cord, but again there was nothing visible in the scans that could be the cause of my bladder symptoms. So we’ve pretty much concluded that my bladder symptoms are simply ME symptoms, and the only chance of them improving, is if my ME as a whole improves.
The Urologist, in an effort to do something helpful, did refer me to a bladder nurse (that’s probably not her official title) who visited me at home. She asked me lots of questions about my diet and water intake etc, and said there are no improvements needed in that department, my diet is as healthy as can be. She asked if I had ever made notes of what I eat and when, to see if I notice a pattern in my bladder symptoms. I have already done this, and the only clear trigger is chilli. Since early/mid- 2014 I have not been able to eat chilli in any form – no fresh chilli, dried chilli flakes, chilli powder or paprika etc. Of all the food I am now intolerant to, thanks to ME, this is the most upsetting. I love chilli. I miss spicy food far more than I do alcohol, which I have also had to give up. I can tolerate pepper though, and I find white pepper to be the best substitute for chilli. Black pepper offers more flavour, but white pepper has more heat.
So, the bladder nurse left having told me that there’s very little she can offer me. As a last ditch attempt, she did suggest I start doing regular pelvic floor exercises again. I did do these back when I saw the first Urologist, and it didn’t help, but I thought it could be worth giving the exercises another shot. However, it turns out that pelvic floor exercises now cause me pain and in fact trigger my bladder symptoms, which is what I experience when I use tampons. I mentioned this to my GP (I had a forty five minute appointment with her a few days ago, to get through my mammoth list of maladies), and she told me to stop doing them. So that’s that. My bladder doesn’t like having ME.
Also this year, I was referred back to the Gynaecologist I saw in 2016, the same one who diagnosed my Endometriosis (the first Gynaecologist I saw in 2015 refused to investigate for Endometriosis as she believed those symptoms were ME symptoms). I mentioned in my last General Update post that I was considering Endometrial Ablation. This is the removal of the endometrium, or, the lining of the uterus. The purpose is to reduce the amount of blood loss during my period, or eliminate it altogether. It can only be done on women who either don’t want to have children, or don’t want any more children, because, while technically pregnancy can occur, it would be dangerous, and most likely result in miscarriage. Thankfully my doctor trusts that I know my own mind, and believes me when I tell him I don’t want to have children, and he agreed it would be a good solution for me. I had it done at the beginning of November.
It is often performed under a local anaesthetic, and that was what I initially wanted, thinking it would be gentler on my ME, but the doctor advised I go for a general anaesthetic. He said that even with a local, and pain relief, I would find it incredibly painful, specifically, the forceful dilation of the cervix, which they need to do to access the uterus, in order to burn the lining off, and he advised that anyone who hasn’t already experienced this (dilation) through childbirth, should go for a general. He said the intense heat from the actual burning off of the lining would be very unpleasant too, and that was the bit that actually changed my mind, also, my ME actually didn’t react too badly after my last two generals, so I chose the general and hoped for the best.
On the day of the surgery (well, it isn’t really surgery, given no incisions are made, but you know what I mean) I had to arrive at the BGH (Borders General Hospital) at 7.30am, which, due to my ME induced wonky sleep schedule, is the middle of the night for me. It meant my mum had to pick me up at 6.30am, and because I wasn’t allowed to drink anything after 5.30am, I got up at 5.25am so I could quickly take my morning meds with a glass of water. The early start was what I was dreading most about the day. I’m often unable to move and lift myself up for a while after I wake up (a ME symptom, it’s like a temporary paralysis), so when I have to get up at a certain time to make an appointment, to be sure I’ll actually manage to get out of bed in time, I need to set my alarm for one to three hours before I need to get up. I went for one hour on this occasion, which meant I woke up at 4.30am. I also rarely get to sleep before 1am, and on this night it was closer to 2.30am, so I went to hospital on two hours sleep. This early start however did give me something that I had been missing for the last four years, without really realising I’d been missing it. On the drive to the hospital, I saw the sunrise! It wasn’t the best sunrise I’d ever seen, but it was still pretty great. Living in such isolation, I’d kind of forgotten that the world is still turning.
I was the first surgery of the day, so thankfully I didn’t have to wait too long beforehand. I was wheeled along at 9am-ish, woke up at 10.08am, and I was discharged around 2.30pm. Overall, the actual being in hospital wasn’t as bad an experience as previous times. I don’t often experience this, but the nursing staff really took care of me. I felt like they always had it at the forefront of their minds that I wasn’t just a surgery day-patient, I was a ME patient too. They really did their best to make sure I was comfortable. Just being in hospital for a few hours, the early start and the drive there and back meant it was a huge day for me, in terms of ME, and far more than I can safely manage, meaning, without having a huge crash afterwards. So in these situations I always appreciate when the nursing staff try to mitigate any factors that could make it even worse for me, in this case, making sure I was in the quietest bit of the unit. When I had my tonsils removed in 2017, this did not happen.
I’ve had five surgeries/general anaesthetics in my life, two were pre-ME, and the other three all since I’ve had ME. Something I’ve noticed with my last two anaesthetics, plus this one, is that I seem to feel remarkably well, in terms of my ME, for the rest of the day (of the operation), it continues through the following day, but the next again day I feel worse, and I continue to feel terrible until the crash wears off. It makes me think that there’s something in the drugs they gave me for the anaesthetic that helps my ME, and as the anaesthetic wears off, thirty six hours or so later, I then begin to feel the effects of the over-exertion and the surgery. When I say I feel remarkably well in the hours after the surgery, I don’t mean that I feel as well as can be expected for someone with ME who’s just had an operation, I mean, I feel better than I do even on my ‘normal’ ME days. Obviously I feel the effects of whatever the surgery was, in this case I had lower abdominal/pelvic pain, but it’s almost like my ME improves in the hours immediately after the anaesthetic. This makes me wonder, if I’m not imagining it, which of the drugs is it, and, would it be possible to be given a daily low dose of whatever drug it is? What is also really strange, is that, since having ME I’m usually so intolerant to medications, even really mild stuff, I tend to get all the side effects, and severely, so how does my body tolerate powerful anaesthesia drugs?
I heard another theory recently, that people with ME recover from anaesthesia faster than other people. Or perhaps it would be more accurate to say, we ‘feel’ like we recover from anaesthesia faster. We’re used to feeling unwell, so, while a non-ME person will feel rough after an anaesthetic, people with ME just feel ‘normal’, because we always feel rough. I have no idea how accurate this is, but it is an interesting idea.
But anyway, after the effects of the anaesthetic wore off I did crash, badly, and I’m still not quite back to how I was beforehand. But this was to be expected given how full-on that day was. It’s too soon to tell how well the ablation has worked as it takes a few months to settle. I have had a period since the procedure, and while the bleeding has been minimal (which is good), it’s lasting longer (seventeen days so far, my norm is six/seven days), and it has been very painful, at times more so than my pre-ablation periods. I’m hoping it’s because my uterus is still healing, the inside of it is still an open raw wound, so having a period in a not yet healed burnt out uterus is bound to be painful, I imagine.
Oh, and one more thing, after the sunrise, the next best bit of the day was during my pre-op chat with the anaesthetist. While discussing my odds of a swift recovery from the anaesthetic, she said something along the lines of… “you don’t drink alcohol, you don’t smoke, you’re slim…” !!! She said I was slim! This may be rather superficial, but staying in control of my weight has been difficult since having ME, and is a source of anxiety for me. I can’t exercise, so diet is the only tool I have to manage my weight. Thankfully, I genuinely love eating the diet that I do. Giving up animals, animal products, refined carbs and refined sugars is not a hardship for me. I don’t count calories, I really don’t care what the calorie content is of the food I eat, I care more about knowing that everything I do eat, is doing me good. I also only eat two meals per day, partly because I’m only out of bed for ten hours each day, so I can’t fit in three meals, I also don’t have the energy to prepare three meals per day, and my appetite is smaller now, perhaps because I’m less active. Also, because I fit my two meals into a ten hour window, I spend at least fourteen hours per day not eating. This means that I am inadvertently following an intermittent fasting diet. Apparently going fourteen hours without food and having a ten hour eating window is the new trend in intermittent fasting. I don’t know if there’s any validity in this, but if there is, maybe that’s helping me control my weight too. So, anyway, given I always feel a bit on the podgy side, it was nice to be described as slim, and in a factual/medical way, not as a compliment by someone desperate to appease me.
Have I mentioned this before? I can’t remember. I’ve been having some issues with my hands since late last year. Almost every day, usually late at night, my fingers and palms turn red and feel burny hot, it’s incredibly painful. It often happens when I’m trying to go to sleep, but the burny hotness prevents me from getting to sleep. I have to be touching something cold to get relief from the pain. So I try to get comfy, with my head on the pillow and my hands pressed against the cold walls. After a while, the same thing was happening with my hands, they go red and burny, but a finger or two turns waxy white and feels icy cold. It’s very odd, but I can at least press the icy cold fingers against the burny hot bits to cool them down. My feet are a bit weird too, they go red, or purple, or one goes red and the other goes white, but when it happens to my feet it isn’t painful.
My GP and I went back and forth between Mast Cell Activation Syndrome (MCAS) and Raynaud’s Disease, both conditions in their own right, and also both quite common in combination with ME. I tried some medication for MCAS, a high dose antihistamine, but it didn’t help, which is what made us settle on Raynaud’s, but I think there may be a bit of both going on. I could try a blood pressure medication to help with Raynaud’s, but my GP doesn’t advise it, given the side effects, which would exacerbate my ME symptoms and make me feel worse in general.
However! I have been getting acupuncture treatments since the start of the year for migraines and general ME stuff. After it seemed like Raynaud’s was the most likely culprit for my hands, I asked my acupuncture man if he thought acupuncture could help. He went away and did some research, and found that there are specific acupuncture points for treating Raynaud’s, in the palms of my hands. So, as well as the needles in my feet, front of my hands and head, since September I’ve had one in each palm too. I have no idea how it works, I can’t even say if I really believe it works, because I don’t understand it, it doesn’t seem like it should work, but somehow it does seem to work. Maybe acupuncture is a placebo therapy, or maybe there really is something to it, but honestly, I don’t really care. Since we started using the Raynaud’s specific points, the burny hot and icy cold hands/fingers still happen, but not as frequently, and when it does happen, it doesn’t last as long, rarely for more than thirty minutes, whereas before, it would be almost every day, and for a few hours at a time. I didn’t make any other changes at this time, unless it’s a total coincidence, it surely must be the acupuncture.
Post Exertional Malaise (PEM), Post Exertional Neuroimmune Exhaustion (PENE) and Mental Health
*Apologies for all the upcoming acronyms, I know it makes for more difficult reading, especially for people with ME/brain fog. It certainly muddled my head while writing this section, but it was marginally easier/less muddled than writing the full names each time.
If you’re a regular reader, or someone who has ME, you’ll know that the defining symptom of ME is the abnormal response to exertion. It’s not, as is often reported, fatigue. In fact, you don’t even need the symptom of fatigue to be diagnosed with ME.
This abnormal response to exertion is most often referred to as Post Exertional Malaise (PEM). Malaise however, which means “a general feeling of being under the weather”, is a dreadful word, and is so not descriptive of the symptom. I have always used the term PEM though, and I’ve mentioned it a lot in my blog, but I’m thinking of moving away from this. I don’t believe it’s very helpful. Along with the names Chronic Fatigue Syndrome (CFS) and the newer name that some organisations are trying to foist upon us, Systemic Exertion Intolerance Disease (SEID), I don’t think it does people with ME any favours. Rather, it may be aiding the misconceptions that exist about ME. So, I think I might start using the more accurate, Post Exertional Neuroimmune Exhaustion (PENE). And yes, I know pene is Spanish for penis – that is unfortunate.
PENE is the term used in the International Consensus Criteria (ICC), the most thorough and up to date ME criteria, which I shared in Post Seven. Below I have shared the descriptions of both PEM and PENE. This was taken from a document created by the charity ME Advocacy, comparing ME as defined by the ICC, and as defined by the Institute of Medicine (IOM – but now known as the National Academy of Medicine).
The IOM criteria of ME, or as they call it, ME/CFS aka SEID, is lacking in comparison to the ICC. It’s vaguer, and as a result it will include people with illnesses that are not ME, and this is problematic. It risks watering down ME research if the people recruited to participate don’t all have ME. The ICC is simply more descriptive of the illness, and I believe it should be the only ME criteria – for diagnostic, educational and research purposes.
Post Exertional Malaise (PEM)
PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2 day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.
Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS (SEID) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
Post Exertional Neuroimmune Exhaustion (PENE)
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
- Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
- Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
- Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
- Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
- Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.
What I might do for now, so as not to confuse folks, is refer to it as PEM/PENE, and maybe one day I’ll drop the PEM completely.
I brought this up because my own PEM/PENE has been a lot worse this year. I wish I could learn from this, and I can to some extent, but due to the delayed onset, it’s incredibly difficult to measure. I can never quite know what causes my crashes. When I feel myself starting to crash, I always wonder what caused it – was it my shower the night before, my lack of sleep that night, or my GP appointment two days ago? There’s no way of knowing. I can repeat those activities, to try and find a pattern, but the results will vary. What makes it more complicated is that I often seem to have shorter term crashes going on within my longer term crashes – crashes upon crashes!
I’m still in a long term crash (maybe relapse is the better word here) from my Iceland trip last December. This means that I’ve manged far less activity this year than previous years. Last year, I could still go out for the occasional coffee, maybe once every two months – not anymore, the last time I went out for coffee was December last year. I can now only leave my home for medical and counselling appointments, and for very rare short outings with my mum, usually for a drive. All of these outings cause me to crash, but I have to weigh up the benefits. Having regular support from my GP and counsellor, and getting outside for fresh air and a change of scenery every few months is vital for my mental health.
While I’ve been in my Iceland relapse, I’ve also had a lot of other things going on, all of which have contributed to my decline this year. The summer heatwave and the many months I have had to dedicate to working on my PIP application and my ESA renewal (disability benefits) have been a huge factor. It’s been an emotionally difficult year too. There was that thing with the cat (see Post Twenty Nine). Also, in July this year some of my relatives from the States and Canada came to Scotland for a family reunion. I saw them all briefly, and it was lovely to see/meet them (three second cousins who I haven’t seen since 1988 – one of them was the first baby I ever held!), but it was also very difficult for me not being able to take part in the family dinners and day trips. While it always makes me feel sad, I usually handle these things ok. I know that life has to go on around me, I can’t ban everyone I know from living until/if I’m well enough to join in again, but this was a particularly difficult one.
An inevitable consequence of my ME worsening this year, is that I’ve generally felt a lot more isolated. I haven’t been well enough to socialise and interact with people as much I would like, or need to. I do have a handful of people who, in lieu of seeing me in person (due to geography or lack of time), do keep in regular contact with me. These are the people who understand and accept my limitations and don’t expect more from me than I can offer. So many people have disappeared from my life since having ME, so the ones who have stuck around are invaluable to me. I still grieve for the people I’ve lost, and I try not to be angry with them, but I can’t help but feel hurt. Not everyone is built to handle chronic illness and disability. They can’t cope when their previously healthy friends suddenly have different abilities, needs and priorities, they don’t know how to deal with it, so they distance themselves from it.
The other consequence of my continuing/worsening ME and the isolation, is the decline in my mental health, which I am still struggling with, both the depression and anxiety. At the moment I feel I can handle the depression slightly better than the anxiety. I am, at times, not all the time, able to distract myself when I’m feeling low in mood. But I find the anxiety is harder to ignore. The nervous dread that I feel, the panic and the constant feeling afraid, of everything and of nothing in particular, is crippling. I’ve said before that I liken this to the feeling I had when waking from a nightmare as a child. But now, it’s a permanent fixture within my life. I’m hoping that this will ease as/if I can gain more control of my life. I have some changes to make and things to do, all of which I will get into next year.
I think that’s it
As far as I can remember, I think that’s us pretty much up to speed. What I haven’t covered in detail is my PIP application or my ESA renewal, and I also want to tell you about what’s going on in the wider world of ME, from the NICE guidelines review for the treatment of ME (The National Institute for Health and Care Excellence – they provide guidelines for the NHS), to my own personal advocacy efforts. But there’s so much to say that these really merit posts of their own, which I’ll hopefully get round to soon, ish.
The Sunday Times. How it feels to… be exhausted 24 hours a day.
Simmaron Research. Immune Study Adds to Evidence Of Body-Wide Problems With Energy Production in Chronic Fatigue Syndrome (ME/CFS).
Simmaron Research. Could “Junk DNA” Be Causing Chronic Fatigue Syndrome / Myalgic Encephalomyelitis?
Stonebird. Severe ME : What You Don’t Say, What You Don’t See.
Health Rising. Workwell’s Two-Day Exercise Tests and Breaking the Deconditioning Dilemma in Chronic Fatigue Syndrome (ME/CFS).
Simmaron Research. Could Crippled Herpesviruses Be Contributing to Chronic Fatigue Syndrome (ME/CFS) and Other Diseases?
Health Rising. Anaerobic Thresholds, Fatty Acid Problems and Autophagy: Dr. Klimas’s Exercise Study.
Health Rising. Free Six-Part Online ME/CFS / FM Video Series From the Bateman Horne Center Begins.
Health Rising. Are “Old” Muscles Holding People with Chronic Fatigue Syndrome (ME/CFS) Down? Plus Tompkins’ Team Promises New Insights.
Bateman Horne Centre. Cutting Edge Technology for ME/CFS Biomarker Discovery.
Not The Science Bit. The Triumph of Eminence-Based Medicine.
Health Rising. ME/CFS, Naviaux’s Cell Danger Response and a Nervous System Under Threat.
BBC News. ME and chronic fatigue: ‘Some doctors don’t believe you’re sick’.
Health Rising. The Metabolic Trap Shines During the Symposium on the Molecular Basis of ME/CFS at Stanford.
Health Rising. GET Paper Withdrawal Shocks CBT/GET Proponents – Emboldens ME/CFS Advocates.
Sage Journals. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review.
CNN. Indie pop sensation’s disease became his muse.
Simmaron Research. Could the Brain’s Mast Cells Be Causing Chronic Fatigue Syndrome (ME/CFS)?
Health Rising. Invasion: The Source of the Neuroinflammation in Chronic Fatigue Syndrome?
Health Rising. Brain on Fire: Widespread Neuroinflammation Found in Chronic Fatigue Syndrome (ME/CFS).