Of late, especially over the last five years or so, pain has become and is very much a biggie for me … it is in fact my worse ME symptom, consisting of face, eye, head, upper back, arm, wrist, hand, leg, foot, ankle, and widespread nerve pain.
Actually, correction, when I think about it I have always had pain as part of my ME. It’s just that it has only been in the last 5-7 years that I have been medicating for the pain.
I do recall several doctors, years ago (1987), prescribing me all kinds of pain medications that I was reluctant to take until I could no longer cope with the pain levels. It took from then, approximately 1987, until around 2015 before I began to resort to taking pain medications.
Let’s first take a look at severe ME symptoms and how ‘ME’ is defined:
ME / CFS:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with many symptoms that may change over time and differ from patient to patient. The most common symptoms of ME/CFS are post-exertional malaise (worsening of symptoms upon even minimal exertion), unrefreshing sleep, profound fatigue, cognitive impairment, orthostatic intolerance, and pain.
The cause of ME/CFS is currently unknown, but a combination of genetic and environmental factors appear to be relevant. There are no specific diagnostic tests or FDA approved treatments available.
Given those two describers I have to wonder why my pain has never really been directly linked with or to my condition severe ME, until meeting my last GP. I do have additional diagnosis’ of conditions that have pain as a main symptom or part of their symptom list, including fibromyalgia, migraine, TMJ, hemicrania continua, as well as and on top of the severe ME diagnosis, and so I am uncertain which causes the most pain. Nevertheless, whichever causes it doesn’t really matter. It is enough to state that pain is definitely a large part of my illness.
I would like to point out a few things at this point.
Firstly, it took until 2001 to actually diagnose me with ME.
Secondly, I do not think the general doctor (GP), in the UK, is taught enough or knows enough about either of the conditions I have. Plus, I think the diagnosis of ME/CFS and / or fibromyalgia is used a catch all, it was in my own case, when all other tests return negative and so bloods do not tell the doctor anything they understand in terms of a diagnosis, it is then they may then refer to your condition as ME/CFS and / or fibromyalgia.
This is my diagnosis, well the diagnosis I got in 2001, which was a long time after I first got sick and a much longer time ago before I became severe, ME/CFS and / or fibromyalgia that is exactly how it is written in the letter from my consultant in 2001.
Thirdly, some doctors don’t even believe in ME and so their patients will get an even rougher deal.
not good enough …
However, this really is not good enough. Dr Nina Muirhead and the Medical Education Working Group have together designed a new training course for health professionals. The working group was formed from members of the UK CFS and ME Research Collaborative (CMRC) and have co-opted in representatives from various NHS fields to develop this resource.
The aim of the new document is to ensure health professionals are up to date with the latest biomedical research, have a clear overview of the condition and symptoms, as well as make them aware of the evidence of harms from graded exercise therapy.
The course was put together using patient stories as case studies to ensure that patient experience is at the heart of what health professionals learn about ME/CFS. Dr Muirhead, who has ME and spoke about her experience at the CMRC conference in March, is now working with organisations including Action for ME to distribute this training course as far and wide as possible.
workwell foundation videos …
Additionally, I was utterly shocked to hear in one of the workwell foundation educational videos … that pain features highly in ME, especially severe ME and that the type of pain ME sufferers have also responds well to opiate based pain medications. This is certainly true for me and my kind of pain.
I have been ill since 1984 and have always been fed the idea that because my fatigue element wasn’t my worse symptoms and that because it was pain I was told I may have a fatigue that relates to always having migraine pain not in fact severe ME. No where was ME, at any level, ever mentioned regarding my condition until around 2000.
For instance, migraine fatigue. Because migraine features heavily in my ME too. And so any fatigue was often blamed on continual migraine exhaustion.
Then to watch these videos, specifically the two in the severe ME/CFS section, it was, and still is, shocking; it made me cry to realise and know that they were describing me in their words and the term they used was severe ME.
When you are in pain, day after day, month after month, year upon year, treating that pain becomes paramount. Because always being in pain wears you out and wears you down often making you feel like you want to give up.
Interestingly, I find if I can manage my pain well, even if it hasn’t completely gone, but if I can get it to levels that I can personally cope with, then my life outlook is much better and I don’t feel as sad about the monumental loss involved in having ME, even though I’m not doing stuff.
As I mentioned above, pain medications have been offered to me for years before I eventually started to take them and now I sadly cannot get out of bed without them.
Additionally, I have been offered anti-depressants that also work as a migraine and pain medication. However, these don’t suit me and trigger terrible anxiety, which is not by any mean an answer or fix to my pain.
As well, I have been offered other migraine preventative medications in the form of a beta blocker. Again, the side effects were more unbearable than the pain.
You see, pain is familiar to me. I have had pain now for over 35 years so I know and understand it. Whereas, extra fogginess in my brain and dizziness and cloudy thoughts are not what I need on top of pain. You see, the medications I’ve tried so far haven’t taken the pain away they’ve simply lessened it. Thus making it more bearable.
I have also tried two nerve pain medications, gabapentin and pregabalin. Both of which had some very unwelcome side effects without actually making much difference to the pain levels.
the dreaded opioids …
Finally, I have to discuss the opioid based pain medications that some ‘do good’ type researchers, who don’t have any pain let alone the kind that responds to opiate based medications, have decided are not good for you and need to be used sparingly and withdrawn from those who maybe addicted.
These researchers are now claiming that regular use opiate based pain medications cause rebound pain. And off the back of this NICE are addressing this by adapting their guidelines for pain and pain medication treatments.
However, apparently and according to other researchers, specifically those working with ME / fibromyalgia and other pain patients, these opioids are in fact the ace for ME / fibromyalgia pain.
They certainly work for me and my kind of pain and are what allow me to get out of bed most days.
NICE please be careful in your guidelines that you take care not to take away mine, and many other’s, lifeline, I sincerely need these opiate pain medications to get out of bed and face the day, still in pain but much less so.
groundhog day …
Every morning when I wake it’s like ‘groundhog day’. This is because I wake as though I have some extremely serious illness, like a brain tumour, meningitis or septicaemia or some other very serious illness.
I always wake with a blistering headache, which is so painful I can’t find words to describe it, my eyes feel like someone is trying to screw them out, my neck feels unbearably tense, and rigidly stiff, I ache severely all over and feel like I am seriously unwell.
In order for me to be able to face the day after waking up so poorly, I need to approach each day carefully and kindly.
And so what I do is this:
I take my pain medications the second I open my eyes, as long as it fits in with the pattern of taking them the previous day, (usually made up of 1 cocodamol and 1 syndol). I always have my earphones in from the night before and so I put on a meditation, if I can cope with noise. I lay there and just breathe through the meditation or silence, whichever is most suitable to how I feel. I breathe consciously, slowly and as deeply as I can and try to instil peace, calm and healing in myself. In with the peace and out with the pain, in with the relaxing and out with the tensions, and so on.
Most days, within an hour I am ready to go downstairs and make myself a latte, which I bring back upstairs and drink in bed in the dark.
However, sometimes they don’t work enough for me to be able to move. This is mainly when the headache is a migraine or a cluster headache, and so I get myself ice packs for my head, eyes, and upper back, and then an hour later I take 3 dispersible aspirin (3 @ 300mg tablets).
Unfortunately, even this sometimes doesn’t work neither. In this case, I endeavour to sleep through it in order to escape the pain using safe quantities and safely spaced out pain medications and copious ice pack (two shelves of our freezer are given over to ice packs of one kind or another).
Then three hours later I will take a second dose of 2 cocodamol and once it works, which it can do by this time, I will then get myself a latte and take it back to bed and enjoy it it the dark.
Sadly though, there are many really really bad days where I have to spend the whole day in bed, using pain medications and ice packs, as well as sleeping, to escape the pain and be able to get through it.
I would like to also add here, for information and to answer those who may claim that some of these symptoms could be linked to withdrawal. I get the very same symptoms after any kind of sleep, even if I sleep as soon as taking my pain medications and then wake an hour later. I still feel as above. The problem here is not pain medication withdrawal or pain rebound. The problem is clearly sleep related. Instead of feeling better after sleep, I almost always feel magnitudes worse and much sicker.
Sleep makes me poorly.
a struggle …
I may make dealing with this sound very simplistic but it isn’t by any means easy. I just know I don’t have much of a choice, which is how I face each day …
I don’t have a choice really …
I either deal with it or I end it by committing suicide!
accepting the reality …
There is no choice in this matter.
Accepting it, how it is, is nonnegotiable.
a rock and a hard place …
Accepting the reality has to be the most difficult aspect you have to overcome with this illness.
The reality that you are alone in navigating the illness and all its symptoms.
You are not put under the care of a medical team.
Your GP doesn’t take you under his wing and keep responsibility for you.
No one wants to know.
You are very much alone with ME.
what this means on a personal level …
No one is taking care of me.
No one cares:
If I feel as though I always smell because I can’t bathe when I want.
That I never get dressed.
That I only bathe every ten days or so, it used to be seven days but I can no longer manage this.
That I feel so horribly less than …
No one is managing my medications or my dietary needs.
No one is monitoring my health, be that my physical or my mental health.
I have to take care of this all myself.
I have to be astute enough to know when the daily ever morphing serious illness feelings and the ever changing and never ending symptoms are life threatening or simply ME again in one of its many guises. And when I may be going under on an emotional or mental level.
No one. Only me.
You are so alone with all of this …
It is absolutely no wonder that …
people with ME are six times
more likely to commit suicide
in summary & in conclusion …
Medications for pain are paramount and it is up to you to fight for the kind that works for you. Plus, it’s also up to you, as sick as you are, to manage your own illness and know when you need additional assistance in other areas. Like for, personal care, diet, health, both physical and mental.
You are alone and that’s hard. But you must value your life and fight for your rights too.
a personal concluding note …
You are completely alone.
Don’t forget this, ever. Because, as harsh as it sounds, It will protect you.
Consequently, my advice would be to join an online community. Find your tribe. Get close to them and support and take care of one another. These kindred souls will be invaluable. And I am afraid, at least for now anyway, they will be the only set of people who will truly ‘get’ what you are going through and what you are experiencing. They will be the ones that will give you the best help and advice you could get on the condition and all its nuances.
Take care. Love yourself and your fellow human. xXx
Please feel free to contact me to share your outcomes or with any questions you may have.