Early symptoms & progression (story)

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New member
May 18, 2021
Hi, I've just popped in to tell my story as I've been suffering for two years now and have just been referred to a rheumatologist with suspected Fibro.

I'm 29 now and my symptoms began in early 2019 a short whilse after I gave birth to my only child. It initially began and persisted as heavy fatigue in the legs, that would come and go. I spent the first 6 months just assuming I'd over-done some sort of activity and that pregnancy must have knocked me around a bit. Post the 6 month mark my symptoms were getting progressively worse and noted that it didn't seem to be from over-doing any activity, the symptoms were more random, although I noticed that activities could make the symptoms worse.

I have two slipped discs, SI joint dysfunction and terrible chronic lower back pain. I assumed that the problems I was having in my legs related to my lower spine and told my doctor so. Over the next year my doctors/consultants ran numerous tests to see if I was suffering spinal complications that could account for the heavy legs, but everything came back negative (including ECG etc). My doctor than ran all the bloods possible, found I was vitamin D deficient, but nothing else. I was prescribed vitamin D and have been taking supplements ever since. A fog was lifted from over my head, however the supplements done nothing to alleviate the deep muscle fatigue which has only ever gotten worse. Other persistent symptoms include insomnia, lack of deep sleep, nausea, excessive sweating, shakes, loss of appetite and extreme light sensitivity - which has gotten particularly bad this year, to the point I'm wearing sun glasses on cloudy winter days. Some things, such as insomnia and lack of appetite, I have always suffered with - so can be ignored when isolated, however when taken as a whole, the trend isn't positive.

Around 6+ months ago the symptoms progressed into my arms. It was slow and gradual build up of the fatigue in my arms but now it is almost as evident as the fatigue in my legs & buttocks. As of a week ago, I've developed the most horrid pain at the base of my neck which doesn't appear to be going anywhere any time soon.

As it stands right now, I'm probably ridden with the heavy sensation in my limbs 5/7 days a week. I might get a day or two when they randomly go into remission. I've been trying to keep track for a very long time now, but the symptoms don't seem to stick to any one routine. The only thing I can say for certain is that the symptoms tend to be worse in the mornings from the moment I wake up and worse in the evening, from the moment I slow down, and worse (although delayed) after any burst of energy or activity.

Before my symptoms and before pregnancy I was very fit and able bodied (although my cardio could always use improvement). I would regularly walk up to 10 miles a day and work for up to 12 hours. Fast forward to today and a half a mile walk is enough to put me out of action for 2 days. Apart from my limbs feeling as though they are laden with lead, the other major problem has been orthostatic intolerance. I have always struggled somewhat with my lower spine due to injury however since the onset of the fatigue symptoms I can barely stand or sit in one spot for longer than 10 minutes before I start squirming and have to move around and stretch it off. I have also been suffering cystitis for the last 12 months, where before I had no such skin problems - not it's quite bad to the point of leaving scars everywhere.

Called my doctor last week to ask for an update and was informed I've been referred to rheumatoid for Fibro. Which is pretty ironic because I always thought these illnesses were made up, before of course I experienced it myself (I know, please don't shoot me).

All in all if I had to guess I'd say I've been immunocompromised since child-birth and subsequent relationship trauma with my ex partner. My body seems to have fallen apart ever since. My entire life revolves around these mystery symptoms and they are depressing me. I can't be as active as I'd like for my toddler, I'm struggling with mobility and getting around, I worry about what this means for my future working life, I worry that nobody else can see these symptoms and might think me a liar, lazy or drama queen.

I've just started training as a web developer so I can give my future self the opportunity to get a decent paid desk job, because as much as I love to be physical, I can see my body really getting in the way of my hopes, dreams and earning potential. I suppose I'm grateful to have an amazing doctor that has managed to get me up to this point in as little as 12 months.

Last year when I joined Fibro & CFS forums many members (various sites) said "It can't be Fibro/CFS you don't meet all the criteria", but it has certainly progressed down that road - so my advice to everyone else making enquiries is to trust your gut and don't be put off seeking a diagnosis even if you are in the early stages of your condition.
I experience the same and more, and have for over 10 years. Diagnosed CFS/ME and the FB few years after on top as pain side kicked in.
I UK most Dr’s will only recognise Fibromyalgia, pretty stupid as CFS/ME is officially medically recognised.
It’s perfectly possibl to have both conditions, Fibromyalgia predominately pain and CFS/ME predominately fatigue. However, both carry so much more ailments and can be a vicious circle.
Check your Dr has done full thyroid tests, importantly.
Learning to pace is the one thing that won’t remove what your suffering but can help sometimes. I say sometimes as, like you said, often there is no reason for flare ups and ongoing suffering…does it’s own thing.
Rheumy likely to do some more in depth testing, but if clear then not much else can do, other than meds for pain.
Do update when can and hope today is a good day x
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