My symptoms: a complete list of my symptoms of ME/CFS, Lyme Disease, Endometriosis, POTs and Fibromyalgia

Laura’s Pen lists all the symptoms she suffers with, in an attempt to show the true extent of chronic conditions like ME and Endometriosis…

I have a lot of conditions. Shall we list them all? ME/CFS, Lyme Disease, Endometriosis, Borderline POTs, Fibromyalgia, Hypothyroidism, Pernicious anaemia. That’s a lot of conditions, with a lot of symptoms.

And while Fatigue is my dominating symptom, I think to understand an illness you need to get to grips with all its little quirks, all the symptoms that affect your daily life but perhaps don’t come top of the list when you try to explain your condition to others.

So I’ve made a list of all my symptoms under the heading of each of my  life-altering diagnosises (Endometriosis, Lyme Disease, ME, Fibromyalgia and POTs). If a symptom could be attributed to multiple conditions, it will appear under each relevant heading. Some of the conditions I haven’t gone into can also be life-altering, but I was diagnosed with them at a young age and they have been under control since.

You can skip ahead to the condition you’re interested in here:

Endometriosis
Fibromyalgia
Lyme disease
ME/CFS
PoTS

Endometriosis

I was diagnosed with severe Endometriosis at the end of last year. It hid under the disguise of my other conditions for a long time. It is a condition where tissue similar to the endometrium (the lining of the uterus) grows elsewhere in the body. The Centre for Endometriosis care has some really good info on this condition if you’d like to find out more.

You can also read about how my symptoms developed over the years here.

My definitely endometriosis symptoms:

• Fatigue (how much I do not know)
• Pelvic pain- worse during periods, gets intense when standing still – heat soothes but doesn’t remove. During periods it stops me doing anything (other than crying whilst hugging a hot water bottle)
• Lower digestive system feels swollen during period (combined with above that’s basically my whole abdomen and pelvis in pain)
• Pain in actual groin just as my period starts, some pain with urination when this hurts
• Pain down front of thighs which extends from my pelvic pain and is also triggered by putting weight such as laptop on my legs
• Constipation and gas at start of period. Hurts badly when I pass first few stools once it releases. I also just randomly get constipated for no apparent reason
• Pain to the left of my belly button when constipated or if I wear any trousers other than loose leggings for the day (takes all day to kick in but lasts several days after) or if my partner leans on my belly when watching TV
• Off hormonal contraceptives – heavy irregular periods with clotting that last 7 days. Particularly dark and clotty first few days. Comes on very suddenly.
• Using combination pill- heavy periods lasting 7 days with clotting but predictable timing
• On prostegeon-only pill – dark brown spotting most days but no period took a look time to settle but pain did reduce (although didn’t go completely as it doesn’t get rid of the Endometriosis)
• Using Minera coil – some small red spotting, less than prostegeon-only pill but pain symptoms much worse and constant
• Pain during and after sex

The possibly Endometriosis symptoms:

• Right shoulder pain
• Feeling like I can’t breathe properly if I wear a dress/top with a stretchy waistband not made two sizes too big for me, or with a properly fitting bra. Also when reading aloud. I think this symptom may be more apparent if I was more active. Varies in severity.
• Nerve like pain in my legs
• Bladder leaks
• Low libido
• Slightly raised inflammation markers
• Decreased sensation in sexual parts
• Bad acne that started as I got ill, and spread all over my back when my pain symptoms set in and endo symptoms became more apparent. Makes my face swell up around the spots if left untreated

Fibromyalgia

My Rheumatologist diagnosed with Fibromyalgia several years ago, although I am now unsure if this diagnosis was correct since learning about Endometriosis. I was diagnosed with Fibromyalgia by the new criteria: which is having pain in enough areas of your body, rather than on certain points on your body. However, I have been tender on the Fibromyalgia points since before I had any pain issues. But I’m sharing the symptoms that got me diagnosed. Find out more about Fibromyalgia here.

• Fatigue… again
• Tenderness in a lot of areas of my body
• Joint pain that comes and goes
• Legs hurt when extra weight applied (can’t wear pyjama bottoms or extra blankets at night). I’ve been told this is Allodynia.
• Nerve pain in legs
• Right shoulder and neck pain. Worse at night originally. Sleep on ice packs and without pillow. And use hot wheat bags throughout the day
• Painsomnia (insomnia caused by pain)
• Dry eyes (negative for sjogrens on both blood and lip biopsy tests but basically no tear production on schirmer’s test)
• Slightly dry mouth
• Vaginal dryness
• Slightly raised inflammation markers
• Muscle twitching
• Raynaud’s Syndrome

Lyme disease

I was diagnosed with Lyme disease last year. I see it as the root cause behind my ME (although this wont be the case for every ME sufferer). Lyme Disease UK have some great information if you would like to find out more about the disease.

• Extreme constant Fatigue: need to rest constantly throughout the day in order to live within my energy limits. Stops me being able to work.
• Brain fog caused by being mentally exhausted all the time
• Poor concentration and cognition, becomes worse the more I do
• Very poor coordination in the mornings (bump into walls)
• Wake feeling unrefreshed
• Burning pain in knees, legs and heels. Much worse at night and during period.
• Pain when weight put on my legs
• Slightly raised inflammation markers
• Neck stiffness and pain
• Pain in right shoulder
• Short of breath when I wear well fitted bra, clothes with elastic under bust, or reading aloud. I’m fairly sedentary so I’m not sure what would happen if I tried to exercise. Seems to vary in severity.
• Decreased sensation (slightly) in various areas of my body. Was worse when I first became ill and I saw several neurologists and had an MRI but nothing was found.
• Acne (I use benzoyl peroxide to keep it under control, otherwise I have bad swelling from it in my face)
• I used to have sudden burning or prickling flushes on face, arms and chest like a Niacin flush but without consuming anything at all (would happen first thing in the morning). Would go bright red. Never explained by doctors. Doesn’t happen badly now, but I think it still happens more mildly
• Social anxiety (possibly, couldn’t just be another condition)
• OCD (as above)

ME/CFS

I’ve had ME since I was a teenager, although experienced a period of remission in my early twenties. At 25-years-old it struck me down again and I remain housebound five years later. Find out more about ME here

• Yep fatigue again. Is it starting to make sense why this is my dominating symptom?
• Post exertional Malaise: this is what happens when I don’t live within my energy limits. It is a worsening of symptoms 24-48 hours after over-exertion. And that doesn’t mean going for a run. That can be thinking too much, doing household chores, sometimes just being awake and dealing with all the stimulus around you. And as punishment, you can do even less without over exerting. Take a look at my comic which demonstrates this symptom.
• Low exhaustion threshold. It really doesn’t take much for me to get completely worn out so my brain doesn’t work anymore and my body feels weak. I have to rest after a bath…
• Wake feeling unrefreshed
• Having to rest throughout the day
• Brain fog/cognition problems – trouble thinking clearly, finding words, recalling details, breaks in automatic thinking (i.e. putting the kettle in the fridge)
• Low libido
• Eyes tire easily
• Problems focusing if eyes get tired which leads to nausea
• Light sensitivity
• Noise sensitivity

Postural Tachycardia Syndrome (PoTS)

PoTS is a condition where your blood vessels don’t restrict properly when you change posture, meaning that your heart has to work extra hard to get blood up to your brain. A lot of people suffer with this much more severely than me and it is a common co-condition for ME sufferers. You can read about POTs here.

• Feeling dizzy when standing up. Eyes can black out and limbs shake. I basically nearly faint and have fainted when younger because of it.
• Feeling dizzy after a hot bath or shower. This is because all the blood has gone to your skin and makes it even harder to get to your brain.
• Heart rate rising substantially when standing, hot, reaching above my head (this makes me go dizzy), or having an animated conversation whilst consuming alcohol.
• Palpitations/ the feeling of your heart thumping in your chest
• Whooshing sound in ears when I stand up
• Headaches when upright
• Fatigue that is worsened by posture and more “payback” if you do any of the things above that increase heart rate substantially
• Brain fog and cognition problems that are worsened by posture

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10 things that seem normal when you’re chronically ill that definitely are not But you don’t look sick?! – A letter on why I hide my illness What if? A poem about living with chronic illness Why I took to twitter to live-tweet a day in the life of ME/CFS, Endometriosis, Lyme Disease and Fibromyalgia