This is a blog I haven’t felt comfy about writing simply because I am now really unsure as to where the overlap is between my M.E symptoms and those which are entirely down to Covid19 – ‘Long Covid. My health is currently an awful lot of ifs, buts, and maybes and it’s not a place I am comfortable being in. I am used to knowing what’s what with my M.E and I have a good knowledge of what is, and is not M.E, due to founding and managing an online training company about the disease! However, in terms of my lived experience, quite a few things are unchartered territory.
So, I am going to spend a quiet rainy Sunday afternoon putting it all down on paper, what is going on with my ill health right now?
Here is a list of my additional symptoms since March 2020 when my bout of acute covid19 started – I’ll write a bit about each one in the blog.
Sharp acute headaches (different to previous M.E headaches).
Sporadic acid reflux (no explanation as yet)
Vocal cord issues/’hoarse’ voice/losing my voice frequently (ENT referral)
‘Allergy eyes and sinuses’ (likely Mast Cell Activation Syndrome but no explanation as yet)
Rib pain (all over – I’m guessing it could be worsened HMS/EDS but no explanation yet)
Crushing ‘elephant sat on my chest’ chest pain (no explanation yet)
‘Hot joints’ all over (tested for Rheumatoid Arthritis – negative. No explanation yet)
Breathing issues ( told ‘faulty’ Autonomic Nervous System issue – add it to my other M.E ANS issues)
Orthostatic Intolerance has significantly worsened ( No explanation yet)
As I have said above, these are entirely new to me personally. They are completely different to the ‘M.E headaches’ I have had since 2006. To be there is a clear distinction between the two and so I am surprised that M.E patients have told me that my new Long Covid headaches are exactly the same as the M.E headaches they have always had. My M.E headaches feel like a build up of pressure due to the inflammation, that pressure feels like my head is going to explode. The headache affects my whole head and are unbearable. The headaches I get with Long Covid purely affect the front quarter of my skull, behind my eyes, through my forehead and back to about halfway into my skull. Because the eye area is so sensitive they feel excruciating and because of the covid link to blood clots and strokes, I have been concerned that I was having a stoke more than once over the last 18 months. Aspirin has become my friend over the past 18 months – it is the only drug that reduces the headache. In me, these headaches are sudden onset and last at least 3-4 hours, Aspirin only dulls the pain. I get them at least every other day and they are much worse in the week before I get my period. The headache pain has woken me up a number of times now. I saw my Ophthalmologist this week as I have noticed a slight change in my eyesight, I wondered if the two were connected. He has told me my headaches sound like ‘Cluster headaches‘ and has told me to contact my GP (have done- waiting for appointment). In terms of eyesight, my prescription hasn’t changed (8 years – same prescription!) but the muscles around my eyes are ‘tired’ (ha!) and so my eyes aren’t functioning as effectively as they could do. Two issues are not related – phew.
Any M.Eeps with my Long Covid type of headache, don’t just dismiss it as ‘another M.E headache’ you should get them checked out by your GP.
Prior to having Covid19, I had never had acid reflux before. It is an intermittent symptom and I was prescribed Omeprazole around 6 months after my acute infection to see if it helped. It ‘takes the edge off’ and I only take it when I have the symptom. I went to A&E with chest pain in October last year and they suggested it could be due to acid reflux and told me to increase the dose. I did, it made no impact whatsoever. It doesn’t appear to be diet-related and I have symptoms whether I have eaten ‘light’ or ‘rich’ foods. As you will read, a couple of my other symptoms have been put down as due to acid reflux but I have had no explanation as to the cause of the acid reflux. That is frustrating given that many things can cause acid reflux and there seems to be a link to Covid19. I ‘only’ have reflux once a week/fortnight…if that….. and yet Doctors keep telling me that other symptoms I have every day are due to this symptom!
Vocal Cord and Voice Issues
This is the symptom that is (not literally) killing me. Combined with my ongoing M.E neck issues, the area between my collarbone and back of my throat is painful and feels taut. I have always had a slightly husky voice with my M.E, I only have to watch Foggy’s old YouTube videos to hear that! But this FEELS different. It feels like my vocal cords get very tired and weak if I have talked for any length of time and as if they will snap if I don’t enforce being silent for a while. My M.E ‘sore throat’ is completely different – it hurts to speak and swallowing is painful, it is a sharp pain that feels like it is glandular in nature. This Long Covid throat issue is strong but dull pain, it doesn’t stop me from talking but I FEEL like I have to stop using my vocal cords before I damage them. My vocal cords feel like they have been sandpapered. I literally sound like I am croaking when I am speaking, this worsens to the point that I lose my voice entirely. My voice sounds ‘whistley’, ‘squeaky’ and unnatural, I am also unable to increase the volume of my speech. I was referred to ENT 3 months ago but there will be a LONG wait. ENT refused the referral unless I checked it wasn’t acid reflux causing the issue – increasing the Omeprazole didn’t make any difference.
‘Allergy’ Eyes and Sinuses
Prior to Covid19, I had traits of MCAS occasionally. I have had rashes on the tops of my feet when I sit in sunlight and occasionally also have rashes on my wrists. The M.E community has often told me it could be an indicator of MCAS. Since having Covid19, I feel ‘allergic’ in my eyes and sinuses every day. I have taken antihistamines for the past 20 years for various reasons so I get these additional symptoms despite already taking antihistamines every day. I have doubled my daily dose and won’t do anything else until I have spoken to my GP about these specific symptoms. I know about the low histamine diet and have briefly followed it but, life is so crappy at the moment that I am struggling to find the willpower to stick to it. Honest and true! The Ophthalmologist I mentioned above didn’t see any sign of redness or other problems but I wasn’t in a ‘flare’ during my visit.
I have had well over 1000 M.Eeps tell me this is Costochondritis over the past 18 months. I don’t believe it is that, despite it being common with this type of illness. Let me explain why. The pain in my ribs is not near my Sternum and does not feel sharp like a heart attack. It affects my ribs all over – front, back, sides. It FEELS as if little tiny piranha have nibbled the insides of my ribs and made them all very weak, fragile, and painful. To be clear, I didn’t have a ‘persistent’ cough, I haven’t coughed hard enough to damage my ribs. My cough was always dry so I never felt the need to ‘cough stuff up’, I simply had 3-4 individual dry coughs every day. The reason I think it COULD be Ehler Danlos Syndrome-related, is that I was diagnosed with Hypermobility Syndrome in my teens using the Beighton scale. Since the emergence of EDS, I have noticed that I have many other symptoms – as does my Dad. 3 years ago I asked my GP if I could be tested for EDS and was told it wasn’t anything that could be done on the NHS. I dropped the subject. However, I now strongly believe that Covid19 has worsened the ‘minor’ EDS I had 3 years ago and it is that that is now making my ribs hurt. I could be 100% wrong but it would be nice to know! My joints are more flexible and painful than ever before so I would quite like an explanation, Arthritis has been ruled out with blood tests.
I feel this symptom mostly when I am laid down resting, it is particularly noticeable after an afternoon nap. My joints feel like they are on fire. As I said above, Rheumatoid Arthritis has been ruled out. I have had no explanation for this symptoms and I have no idea as to what it could possibly be. Answers on a postcard please!
‘Faulty ANS’ sounds like I’m being fobbed off doesn’t it? However, it is an explanation that makes sense. The Respiratory team at my local hospital tested my lung and breathing function – my lungs are ‘absolutely fine’ and I am ‘breathing normally’. The only other explanation available is that my body has simply forgotten when to breathe. I stop breathing at any time during the day, it is very disconcerting to feel like you don’t know how to breathe! I ‘forgot how to breathe’ when I had taken a sip of water the other day. It took me 5 slightly panicky minutes trying to get back into a normal breathing pattern. ‘Faulty ANS’ sounds probable to me because I have ANS issues with my M.E – temperature control and blood pressure to name two. So I am adding this symptom to my M.E list! In my mind, it’s just another symptom that can come under the umbrella of M.E and as we can lose/gain symptoms at any point, it’s an M.E symptom for me.
I’ve had this symptom since 2006 but Covid19 has worsened it significantly. Orthostatic Intolerance sucks. I now feel the ‘overwhelming need to get flat’ any time I am upright for longer than 2 minutes. I recline at every available opportunity now, it’s impacting my work as I can’t sit upright at Foggy HQ for very long now, much of my work is completed from BED reclined against pillows. I had wondered if it was PoTS before Covid19 hit but, again, my GP wouldn’t test me for it. Once thing that confuses me is that I do not feel faint or have heart rate issues (Tachycardia) so I could now simply have worsened OI. I have been increasingly aware of bulgy veins in my feet when I stand for too long, I am assuming it is linked but have no explanation.
That’s me, described as a symptoms list! My body feels like it is falling apart but I still believe I am ‘only’ ‘mildly’ chronically sick and for that I am very thankful. It could have been much, much worse. The worst bit now is trying to find my new baseline, it has so far eluded me but with the every day stress currently impacting our patient community I am not surprised. I need a few ‘quiet’ months to reset and rebalance. Fingers crossed the much-needed ‘quiet’ comes sooner rather than later!
Sally and Foggy (OBVIOUSLY)
PS. Have you heard about the ‘ME/CFS Patients’ Legal Fund’ Crowdfunder? Take a look!