My diagnosis is PVFS (Post Viral Fatigue Syndrome) / CFS (Chronic Fatigue Syndrome). Also known as ME and in the USA as CFIDS (Chronic Fatigue and Immune Deficiency Syndrome).
DX Unknown commented on another of my posts and asked:
“I’ve been told for many years now that CFS was probably the cause of my episodic fatigue, but it wouldn’t explain all the other stuff. Still, over and over, I meet people such as yourself who are experiencing a WIDE range of symptoms. Here in the states, many doctors still believe symptoms like IBS and constant headaches (to name but a couple) are “rare” abberations of CFS, despite article after article in medical journals about how common it is. I guess I’m having to question if maybe it has been CFS along and my doctors just don’t appreciate how many other things go hand in hand with it.”
You can surf and find list after list of symptoms associated with CFS. Many believe that CFS is a blanket diagnosis for multiple complex disorders. Others believe CFS is not the same as a firm diagnosis of ME – CFS is for people who suffer fatigue as their main symptom whereas ME sufferers are the real multiple symptom sufferers.
I’m not going to get bogged down in names and who is deserving of being a genuine sufferer and not just with a general fatigue disorder (possible induced by stress, etc).
All I want to do is give you my list of symptoms, all of which I have read can be attributed to CFS/PFVS/ME/CFIDS – although not every symptom is on every list! This illness is so vague and there is so little firm information – it drives me crazy sometimes! But here it is – a personal description of what happens to me.
My doctor gave me a fact sheet about CFS when she first gently suggested that it could be CFS. The list of symptoms presents itself as a definitive list and they say it’s unlikely you will suffer all of them. Ha ha ha. I wish. I do suffer with them all. Maybe not every one on the same day, and the list changes over time and severity of each ebbs and flows. But have no mistake this mysterious illness has many many very real and very unpleasant symptoms. (NB: I would say this fact sheet was a very good starting point. But it is not definitive and I would argue strongly against Graded Exercise and CBT being appropriate listed as “treatments”. But that’s for another post. Just exercise caution with the fact sheet is all I’m saying).
I’ll use the symptoms on that sheet and that I find on other resources as the basis for my list.
My Big List of CFS Symptoms:
- Fatigue / exhaustion. A total lack of energy. Like my battery is flat and any re-charge lasts no time at all. I have this day in day out, consistently, with no let up.
- Unrefreshing sleep. I need to sleep for 9-10 hours. Sometimes I need up to 12 hours sleep. But I wake tired, fatigued and exhausted not matter how little or hom much sleep I get.
- Post exertional malaise – if I overdo it I suffer crashing fatigue and exhaustion even worse than normal – often leaving me bed bound for days at a time. Day to day I don’t get this because I am able to organise my life to avoid overdoing it. But I live with it every day because the slightest pushing too far will bring it on.
- Feeling generally unwell or malaise which is similar to feeling like you have the flu. It’s not considered by many medical lists to be a symptom but it’s one of the major problems – you just feel … off colour really.
- Pains – most commonly muscular pains (myalgia), joint pains, and headaches. Mainly it’s stiffness on my neck and shoulders plus headaches. Often the headaches develop into migraines. Most days I feel at some point like a migraine is imminent as I get that pre-migraine fuzzy yucky head. I am currently taking medication that helps ease these symptoms. I also get other muscle pain and joint pain from time to time. This is transient and less common but does tend to linger when it occurs.
- Mental (‘cognitive’) difficulties such poor concentration, reduced attention span, poor memory for recent events, difficulty to plan or organise your thoughts, difficulty ‘finding the right words’ to say, sometimes feeling disorientated. I also get slurred speech as I get more tired through the day or have a bad day. Almost every day I have problems with concentration and memory. I need a lot of help. I find it difficult to deal with official business on the phone because I get confused so easily. If I am having a bad day or have overdone it the cogntive problems get worse and worse. I generally struggle with words, writing, speech and so on when I am particularly bad – but this isn’t every day. There’s a sliding scale of how severe these symptoms are.
- Tenderness and pain from lymph glands in the throat/neck
- Irritable Bowel Syndrome / gut symptoms. I take medication to control this which works most of the time but still leaves me with some stomach and bowel problems, though not as severe as they would be without the meds. For instance I also get excess, wind, bloating, alternating diarrhoea and constipation. Less commonly I also get abdominal pains and nausea (feeling sick). Occasional loss of appetite.
- Weak muscles in limbs -when I stand or hold something in my arms my muscles weaken very quickly. Sometimes my legs are shakey when I stand – usually when I am particularly bad. Sometimes I can’t stroke the cat more than a few times without overwhelming tiredness in my arm.
- Poor grip. Sometimes my grip is just poor, sometimes I can grip ok but it leaves my hand and/or wrist aching for a long while afterwards. This is a transient symptom and less common
- Sleeping difficulties – unable to sleep, disrupted sleep, vivid dreams. This isn’t every day but is around a lot of the time for me.
- Intolerance to noise – some noise I just cannot stand at all. Also, more realted to my cogntive problems I think, I find it very difficult to have noise when I am trying to concentrate. So I find it impossible to have a proper conversation whilst the television is on. Also often to write while music is on, etc. I tend to spend my day with no music, tv or radio on as it’s more soothing that way.
- Sensory overload – it’s very easy for me to get over-stimulated and that then worsens my symptoms. My tolerance is very low. Excitable conversations, dramatic or fast moving films, shopping centres and busy crowded places, and so on. Again this could be linked to cogntive problems.
- Intolerance to light – not so common but does happen from time to time.
- Difficulties with balance – perhaps around half of the time. Particularly bad in the mornings. I also struggle with my coordination. I often need someone else to carry things for me as I tend to drop them, or to do any tasks involving any skill!
- Dizziness from time to time – never sure if this is part of my migraines or a sort of odd head that is normal CFS.
- Disordered temperature control of the body – about a thrid of the time I have problems with my body temperature more severe some times than others.
- Increased thirst . I find I need to drink more throughout the day than I did before this severe phase.
- Recurrent infections – I went through a phase of picking up lots of little infections. I also have had an ezcma flare up which has lasted throughout this latest severe phase.
- Blurry vision – which I get frequently. It’s believed to be the eye muscles tiring very quickly – just like the rest of me!
- Rash – this is a symptom that appears more of patient groups lists than medical ones. I believe I get a rash when I am very very exhausted. Mine is like a bumpy heat rash that I get on my forearms and a few bumps raise on the backs of my hands. Sometimes on my arms it is like goose bumps in almost a solid circle. I also get a sort of pale heat rash on my neck.
- Crawling skin sensation – like I have insects crawling on me. One day I managed to see it happen on my arm- where it felt crawly my arm hairs were standing on end with no external stimuli and the rest of my arm was normal.
- Restless legs – infrequently but persists for several days at a time usually bed time or long periods of sitting.
- Muscle twitching – moves around my body and happens every so often
- Dry eyes – almost all the time they are drier than they were before my illness, some days more severe than others.
- Odd pallor – usually when I am very tired or having a bad patch. Sort of a greyness or absence of colour.
- Sore throat and difficulty swallowing – infrequent. Sore throat presents as sort of a swollen feeling, about to start a bad sore throat and difficulty swallowing is minor but annoying.
- Shortness of breath – not on an asthma type scale but sometimes my breathing feels quite laboured and a lot of effort. I also find I am very short of breath after a big effort like walking upstairs or making a cup of tea.
- Sinus pain – occasionally and often also get it with jaw pain.
- Teeth grinding (or possibly TMJ syndrome) – usually whilst asleep, sometimes unconciously in the day. A dental splint has helped with this.
- Sensitivity to stress – I’ve not found this on any lists but I suffer it and I know others who do too. My tolerance for stressful things is greatly reduced and stress exacerbates my symptoms greatly – as quickly as physical activity does. I avoid stressful things whenever possible.
I’m sure there’s more – but after such a long list my cognitive problems are kicking in!
It’s worth mentioning that all my blood tests for diagnosable conditions came back normal (including liver and kidney function, thyroid, diabetes, rheumatoid arthritis, lymes) and all there’s no sign of immune disorders and so forth (I am forgetting the right medical words!).
My other blood work which was “nothing to worry about” include red blood cell count which was high, but only just over the threshold of “normal”. This test was consistent three times over 5+ months. My cholesterol was slightly high. My B12 was slightly high but I have been taking a large (2000 ug) dose of B12 so I assume without the suppliment the test would have shown low B12. The suppliment helps only slightly however.
My white blood cells were up and down and all over the place when I had the intitial tests done – but I had som many “viral” infections it was difficult to get a consistent measure that wasn’t prejudiced by post or mid infection.
Here’s some sources of symptom list for you to check out so you don’t think I’m some kind of freak!