What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

As per title. Following a chat recently with my wife, it was made more obvious to me that
(a) my medical record does not list what a crash might be like for me, or the fact that I am housebound, and that I'm housebound in order to be able to function at a level that allows me to achieve certain things.
and
(b) that I can't recall seeing a hoarse voice being talked about as a symptom in the current ME literature (my wife uses my voice becoming hoarser as a sign that I'm not doing so well).

Do you have any other examples?

 

This is a very good topic!

a) I think by now it is possible to find all my symptoms in the different descriptions from different specialists. (Everyone recorded something else.)
M problem is that many of these are incorrectly recorded, for example: I don't have difficulty with breathing during exertion. When this happens, I don't have to exert myself in any way, the difficulty is just there, even if I'm not doing anything.

b) The mysterious generalized swelling of my tissues that worsens with PEM and goes down on good days (but never really disappears, just like my lymph nodes are always swollen). This is actually one of my worst symptoms and I have no answers (not even from doctors).
Also the weather sensitivity that triggers my symptoms. This seems to be more anecdotal. So I usually see it as another sensory/environmental trigger that is less recorded.

 

I can't think of any offhand that are not shown in the literature, but there is almost nothing in my medical records that refers to ME symptoms, or even the fact that I have it, other than, as far as I recall, the letter from Professor Pinching from around the late 90s confirming my diagnosis. I can't recall offhand whether it goes into symptoms.

 

None of my symptoms are recorded in my NHS medical records (from what I've seen by obtaining a copy of my notes), just a diagnosis of 'CFS' and referral letters from the GP surgery to consultants in which they use trivialising terms such as 'she has vague symptoms of fatigue and palpitations' rather than my actual incapacitating neurological/dysautonomic symptoms, and after I repeatedly told them that fatigue is not a major symptom for me and to not mention 'fatigue' when referring me to a consultant because it would be untruthful and misleading. But they did it anyway. Their attitude has always been that I'm a malingerer.

I gave up on the NHS and got some good help privately, where they do record my symptoms correctly. But the NHS doesn't want to know; they turn a blind eye to the private doctor's letters. I've had to give up on the NHS except for strictly non-ME-related stuff, eg eye problems and minor common infections.

I don't think I have anything that is not shown in the ME literature - I'm pretty much 100% bog-standard Ramsey definition ME.

Re Andy's question, I have seen hoarse voice/sore throat mentioned in ME literature (I have the sore throat/losing my voice issue myself) but maybe I saw that a while back, not more recently.

 

With regards to (b)
(i) tinnitus - huge problem for me, occasionally noted, but possibly 'underplayed', in the literature
(ii) visual processing issues - visual noise, afterimages, issues with patterns and contrast. The pressure of my glasses also gives me problems when I'm crashing.
(iii) palpable changes to surface texture of muscles and overlying connective tissues / fascia: lumpy, slightly hardened in places, sensitive in places.
(iv) knee joints crack everytime there is even slight rotation of the joint. Never happened before I became ill.

 

What a great idea for a thread. I'll start with major impacts that are not on my medical record, roughly in order of impact (might need to add to it later):

• Having to remain 95% housebound to avoid exacerbations, and the preparation and recovery time needed for every outing
  
  
• Memory and processing issues comparable to the earlier stages of dementia, which are more difficult to live with than the need for a powerchair
  
  
• Needing to live alone because another person's presence in the house is too exhausting keep up for long
  
  
• Major sleep problems, sometimes linked to types of pain and discomfort for which medication is ineffective
  
  
• The need for an exclusion diet; eating some foods leads to disruptive and painful symptoms
  
  
• Inability to read, comprehend, or recall more than half a sheet of text, despite good vision and no literacy difficulties
  
  
• Unexplained PEM-type exacerbations (usually lower-impact but much longer lasting than 'normal' PEM), which can't be mitigated by pacing
  
  
• Rapidly fluctuating changes in temperature perception
  

My ME diagnosis is recorded, along with inability to work, need for a wheelchair, PEM after activity, chronic pain, dizziness and falls, multiple allergies, low blood pressure, progressive peripheral neuropathy, and the weird phases of going into a heavy sleep every time bladder is full(!).

There's still an enormous gap, though.

 

Great thread @Andy

Just today (whilst chasing the GP surgery about whether my email regarding Group 6 vaccine had actually been received on 7 Feb ), I used the opportunity to advise the surgery formally that my OH is my Carer. They have no idea of the extent of my disability.

Only CureME Biobank, Dialogues films and some other studies that I have participated in, have ever asked for a list of my symptoms.

ETA amend ‘disabling’ to ‘disability’

 

a.)
My ME is listed as "Tiredness syndrome of unclear aetiology", which is just about the closest you can get diagnosed with in Germany. ME is, for all intents and purposes, a nonentity over here. It does not do my severe insomnia, the fact that I am nearly fully bedridden, or my experience of PEM any justice. I fail to see where the "tiredness" part comes from, given that I only sleep 3-4 hours per night.

Mild cognitive impairment is noted on my medical records, but only as secondary to depression. I'd like to see the kind of depression that would induce deficits akin to the ones I experience. They do look "mild" on paper, but my records do not take my premorbid state into account, in which case they would look dire.

b.)
I developed several phobias that I did not have before. Heights sketch me out now, and so does seeing blood and gore. I hate the term, since it is so easily abused in the BPS context, but I equate this with some form of sickness behaviour; adaptive behavioural changes "meant" to protect me from additional insults.

In periods of severe PEM, I suffer from sleep paralysis, during which I experience awful nightmares. I generally end up waking up from them screaming. I'm not inclined to tell any doctor about this, since they'd probably try to slap a PTSD diagnosis on me. Note that I never experience these nightmares unless I have physically or cognitively overexerted myself - which one is all the same to my body. I also never suffered from nightmares prior to falling ill with ME.

Sensitivities to medication are documented, but I believe that they deserve more attention, and could possibly even generate hypotheses regarding the pathophysiology of ME. Serotonoergic antidepressants worsen my orthostatic intolerance drastically, and stimulants are just completely messed up. Not only do I not experience any of the expected cognitive benefits, but they do not even raise my heart rate, cause vasoconstriction, or do anything that should be characteristic for that class of medication - even in heroic dosages. At worst, I just suffer from PEM not long after, and end up falling asleep. Sedatives actually slightly increase my energy levels, but they do not change anything about my PEM threshold, so they're never worth the risk.

 

In 2018 as records came online via Patient Access I found ‘CFS’ listed as minor symptom (past). I asked my GP to amend this. So important that pwME check ME CFS hasn’t been relegated to a prior condition.

No record except random tests for GI, ECG etc. No meds except sleeping tablets. Mainly housebound. Little expectation but keep touching base hoping for future change.

Other symptoms: spinal/neck ache when overexerting or PEM, sudden drops in HR to 10bpm below rest.

 

Mrs sloth says that she spots me looking pale and grey as an indicator of a downturn. However she also says I go flushed beetroot red also ...something I have noticed when I pass a mirror.

I definitely get the feeling cold and shivery thing ...we now have temperature displays in the rooms we spend most time in so I can check whether it’s the room temperature or me.

other than that most of my symptoms are typical.

 

Yes, also this. Change in palor, and darker below the eyes.

 

Yep, I had that for all the time that I was still trying to work full time. My mum used to describe me as looking grey. Once I started to overexert less it improved.

 

Yes. Pale skin, but dark circles under eyes. The worse I feel, the darker, and larger the under eye circles. Blue or purple lips likely not noted on file. My ME was assumed to be just burn out. Signs of hypoxia would have hopefully raised more interest, and investigations.

Also, always have a feeling of pressure/swelling in my head. When this flares, my brain fog is much worse. When I've over done it, I get very sharp pains on the top of my head, and pains over my eyebrows.

I'd like to note that some pwME may hold back from providing some of their symptoms to their doctors as a self preservation measure.

ETA: Oops, meant to say thanks for this, @Andy

 

That's very true. I wish this wasn't the case though, because some of these symtpoms seem to be objective, visual evidence of illness, and some may even be suggestive of what's going on.

 

I agree. I've never seen this discussion before re ME; holding back on listing all symptoms. Revealing more could perhaps provide more clues or avenues to pursue. But, it might just land the pwME in a psychiatric ward. Or, on useless meds. Or losing one's driving license.

ETA: or revealing more might just cause more eye rolling.

 

I have a persistent intolerance (strong chemical sensitivity) to acetone. When/if I'm exposed to this solvent I experience of cascade of negative reactions with include violent fits of coughing, difficulty breathing, wheezing (what I imagine asthma--a condition I don't have--might feel like), a massive headache, disorientation and dizziness, a sense that my entire nervous system is painfully "ringing" rather as if I've been short circuited or exposed to a nerve agent, and it typically triggers a crash.

In the early days of my illness I had a similar (but less strong) reaction to cigarette smoke. That has mitigated over the years and now I have a window in which to flee.

I also feel a pressure in my head. Hard to localize. Sometime it feels like it happens behind my eyes and other times it seems more generalized.

In the early years I would have bed-drenching night sweats. I need to put down towelling in an effort to mitigate soaking my bed, which only work in part. That has gone away.

I also experienced painful and swollen lymph nodes, especially one just under my chin and one one the side of my neck. Pain seemed to radiate forth from these lymph nodes. For some years I would have put it as a major symptom of my illness. The lymph pain was a warning sign that a crash was coming (or upon me). Lymph pain is uncommon to me in recent years, but at this moment the lymph node under my chin is aching and I'm in a crash.

I am able to tell when I'm "sick" by my appearance. Others don't seem to be able to do so as well, but that's not entirely the case. There have been a few times when I've seen old photos of myself when i was "crashed" and I've broken into tears and family have wondered "what's wrong?"

These are a few things that leap to mind.

Bill

 

Revealing more symptoms at one's GP's office may, or is a very slow route to scientific progress. The doctor's pwME sample size is probably too small. And, GPs are very busy just paddling to keep up. Even if they are inspired to look further, their time is probably very restricted. Somehow, the message has to be delivered further up the chain of command. Very difficult to do, as we know!

Having ME for quite some time has shown me some about the hierarchy in science and medicine. A very long time ago I used to think my doctor had a lot more say in the system.

 

Most of my symptoms aren't on my medical record. It was very clear from the beginning that discussion of symptoms is not something medicine does well when there are more than a handful, and even that is stretching it. Didn't help that remembering and explaining things has been one of my most disabling symptoms thanks to damn brain fog. At least this one is there, just not quite well-explained but at least my most disabling symptom is somewhat there.

Otherwise it depends what we mean by the literature, because aside from the Ramsey paper, none actually discuss the broad range of symptoms. From reading testimonies, especially adding with Long Covid, many symptoms I didn't link to ME clearly are so it's out there, just outside of medical literature and generally outside of medicine's awareness.

 

I forgot about this one. Mine is more my hands and feet, but they're always blue in the evenings.

There might be a straightforward explanation, but if I ate high-cocoa chocolate in the evening, my palms would go really deep blue. I no longer eat chocolate so I don't know whether it's still the case, but if I turned up in A&E with skin that colour, they'd probably be quite concerned!