Body-wide symptoms, worsening over the years. There was always something wrong and I was in constant pain, with no real explanation of why (but mostly blamed on various injuries). Everything I did, every move I made, my body complained.
Name a body part. Name a pain - I've had about every combination going.
I didn't sleep well and tired easily. I felt weak, and lazy for not being strong enough to do what I wanted to. My mental health eventually crashed, leading to a deep depression for 17 years. I hated the world, myself, everything, with no hope of ever feeling better.
I was too young to voice my pain when it started, and grew up thinking thinking that many of my symptoms were just a part of normal life.
I had no pain-free time to compare to, and grown-ups seemed to have a lot of aches and pains, so I didn't think the weird sensations and random pains were anything abnormal.
From the sudden itches, gnawing, biting and skin crawling sensations. The jolts and random shocks shooting through my limbs. The pins and needles and burning sensations. Stabbing pains and weird sensations that came and went, from head to fingers to toes.
Muscle pains all over my body ranging from dull, background aches to intense spasms. Limbs that fatigued quickly, becoming heavy and hard to move. The stiff, painful legs after sitting, crouching or kneeling. The muscle cramps and 'stitches' in my sides when I ran or swam.
The plantar fasciitis was a curiosity to me as a child - observing as my foot would spasm. How long could I bear the pain before I had to move? Which toe would be pulled in what direction this time?
Crunchy ankles, shin splints, solid calf muscles, pulled hamstrings, popping sensations in my thighs, groin strains. A wide range of pains in my knees, hips, pelvic region, from constant aches to sharp ‘about to give way’ feelings that would elicit an involuntary scream. Every step was sore by the time I was 8. X-rays of my knees showed a problem with the cartilage. My diagnosis of chondromalacia patellae (written on a piece of paper by the orthopaedic consultant) made me feel special at the time. I was told to rest and take ibuprofen when the pain was bad.
My back pain was classified as chronic by age 14. There was always pain but it moved around, from sacro-iliac joints, gluteal muscles, lumbar, mid and upper back regions. More X-rays and more ibuprofen. The tablets didn't touch the pain and I pretty much gave up on doctors at that point . Thankfully I was not in a time or place where opiods were commonly prescribed. My osteopath told me I'd be in a wheelchair by the time I was 40 (a terrible thing to tell a child).
Every night in bed I would fidget around, trying to adjust my hips and legs, shoulders, neck and head, trying to 'align my spine' in an attempt to ease the pain. But I had no central reference to guide me, no anchor to work from - no connection to my Base-Line.
The white fingers (diagnosed as Raynaud's syndrome), cracking wrists, stiff elbows and allsorts of soft tissue pains in my arms. I got to the point where holding or gripping something. e.g. scissors or a knife and fork was hard to do - my fingers felt 'arthritic' after a few minutes, stiff, sore and seizing up and the muscles at the base of my thumbs were sore.
The burning sensations in my upper back and shoulders. The stiff neck - waking up and being unable to move my head without feeling like it was going to explode. I suffered whiplash injuries on several occasions and my neck was rigid - I turned my whole body to look around.
Tension headaches, sinus pain, vice-like bands across my skull. Mouth ulcers and sore areas on my tongue. Sharp 'nerve' pains in my teeth, tense facial muscles and crunching jaw. The twitching muscles around my eyes, tinnitus and ear pains.
I never slept well, with restless legs, recurring dreams and nightmares. I would wake up trying to scream but unable to - I felt trapped, paralysed, unable to move.
The constant feelings of exhaustion. I thought I was unfit but anything I tried to improve my fitness just made me more tired and sore.
The abdominal pains worsened over the years. From pulsing sensations to cramps and symptoms classified as irritable bowel syndrome. I would be scared to eat, knowing it would trigger the pain but I also had a compulsion to comfort/stress eat, almost like I was punishing myself. The right upper quadrant pain was the worst, leaving me doubled up in agony, angry and unable to deal with anything (or anyone), every evening for years.. I did seek medical help when the symptoms started, taking myself to hospital one evening but unable to take the morphine offered because I was also on call for veterinary emergencies (hanging off the bed to make sure I had phone reception). After a scan of my gall-bladder ("sludge and a polyp") I was offered surgery but I didn't think removing my gallbladder would cure the pain so I never went ahead with it. 15mg of codiene would alleviate the pain but I was careful not to take it too often. It became just another thing I suffered through every day.
Every month the menstral cramps would come. Boom! Hunched up, unable to escape the pain and making it harder to concentrate on anything.
Then there was the costochondritis, sore ribs and chest palpitations. I worried there was a problem with my heart, feeling like it was racing and about to jump out of my chest, most often in the evenings when I was sitting on the sofa. I was too depressed see a doctor and at the time the thought of having a heart attack and dying seemed a good way to escape the pain. My pulse would be fast but not in time with the palpitations which didn't make clinical sense. After rock bottom I had an E.C.G. which was normal and now I now believe the sensation of 'heart palpatations' were due to fasciculations and spasms in the muscles of my chest wall.
Age 41 (and 3/4) I hit my physical "rock bottom". Getting of bed one morning, an excruciating pain seared through my body, dropping me to the floor.
I could feel myself going into shock - a sudden chill, shaking, teeth violently chattering, hyperventilating and heart racing.
Trapped in a web of pain and screaming in agony. Any attempt to move ramped up the pain to a level I can't even describe. I'd known a lot of pain over the years, but this was something else.
I was totally helpless, and with a weird detachness, both terrified of what my future would now be and the security of the knowledge that there was no going back.
The day before had been a particularly bad "bad back" day. I'd gone for a walk to get myself moving hoping the pain would subside. I remember finishing the walk side-stepping, taking short steps with my left leg leading, my upper body hunched over and twisted but I'd had many days of worse pain so it wasn't anything unusual. I had spent the rest of the day resting in a chair- which was unusual.
So rock bottom, stuck on the floor scared and helpless. An ambulance came, 2 wonderful paramedics assessed me.&ensp.No obvious neurological damage so we (jointly) decided that a trip to hospital wasn't the best plan. It took nearly a tank of nitrous oxide and two people lifting me to move me the few metres back to bed.
At some point I started to struggle to believe all the pain was real, that I was not faking it (for attention? I tried not to be sympathy seeking) or imagining it somehow.
I think my self-doubt started at school, when felt like I was using my pain as an excuse to not do things I didn't like during P.E. (e.g. cross country running - thank you Mum for a note about my knee pains, I felt so unfit trying to run for an extended time - and it was painful). After an incident in the school gym resulting in an ambulance trip to hospital with my neck muscles torn, I didn't have to participate in any P.E. classes I didn't want to do (trampolining, gymnastics). Looking back these were the the things that hurt the most or involved a "core" strength to curl the abdomen and I just didn't have so no wonder I wanted to get out of doing them(they were also the things that we had to wear hideous gym shorts to do, exposing my 'chicken thighs'). I felt like I was making excuses because I managed to do the things I wanted to do (horse-riding, hockey and other team sports) despite the pain.Life couldn't really be this painful, could it? Was it all in my head?I felt lazy, not doing all the things I wanted to do. Was I a hypochondriac?
My depression really kicked in during my final year of veterinary school. The overwhelming feelings of failure and despair constantly with me. My mind ever-active, constantly buzzing with so many negative thoughts, so many worst-case scenarios. I felt continually stressed, a bundle of tension - me, my job, the world, the stupidity of humanity .... Always trying to plan, wanting to do so many things but never managing much which gave me more reasons to berate myself. I found no joy in anything. I had no hope for the future, no hope of ever feeling better. A deep sadness always there, with the stress and anger bubbling away. I felt like everything was my responsibility - that I was to blame/it was my fault.. I hated myself and the way I was. I felt I had no excuse to be depressed. I had my childhood dream job, a roof over my head and no reason to feel so bad. I didn't associate my depression with all the pain because the pain had always been there, and I had been 'mentally OK' for all those years. Suicide was daily thought. I thought about trying anti-depressants but my gut said I would be in the cohort of increased risk of suicide and I didn't want that, so I guess I didn't really want to die. I just wanted it all to stop.
The chronic pain changed me into something I didn't like. I could see no good in anything, I felt no joy or happiness. Everything was tainted and I hated myself, blaming myself for everything. Until one day the blanket of depression lifted and I started to heal.
Rock bottom left me with an MRI of my lumbar spine showing severe changes to the vertebrae. The MRI was comforting, evidence that the pain wasn't just in my head - but it was old damage, I'd been living with it for years. I. a host of prescription drugs and a shift in perspective. I couldn't go on just managing, something had to change. The recurring advice was was 'use your core' and gentle exercise (although I was very aware of the patient asking, physician answering just to fill in the space senario, people are just doing their best!).
I started daily Pilates (very gentle and slow) and regular time in a pool, moving with a lot of caution and really focusing on doing the exercises correctly. Along the way I discovered my true "core" - my Base-Line muscles.
I stopped taking my meds as soon as I could (very aware of opiate issues and after researching gabapentin I decided not to take it).
3 months after rock-bottom my depression lifted one day as I stood up from a roll-down. It was that dramatic, I could feel how all my mental issues were due to the chronic pain and suddenly I felt hopeful that life could improve. That was the changing point in my life and the start of BLTHHM
I used to think the human 'machine' was a poor design, but I was wrong.
It was poor usage that made life so painful.
I did not use my body correctly.
I was not using the right muscles. Other muscles tried to take the strain which resulted in wide-spread myalgia.
My posture (the positioning of my body) was bad, increasing the stress on my body.
I was physically misaligned and imbalanced. The body is very adaptable, adjusting to avoid painful positions and carry on going but imbalance leads to further imbalance. The problem only gets worse if not rectified.
The damage my body experienced stayed with me - a progression of pain and 'stored trauma' over the years. I absorbed trauma rather than recovering.
My body became increasingly tense, imbalanced and misaligned as my connective tissues stiffened, restricting my range of movement and generating a lot of pain and weird sensation from head to fingers to toes.
fibro hotspots - junction boxes for the stress
Layer upon layer of physical restrictions, bracing me and holding me rigid, like a scaffold. Zig-zagging from left to right, inside to out, front to back.
Chains of tension - twisting and and kinking, compressing and tensing, the whole length of my body as it tried to remain 'upright'. I didn't appreciate how much movement I was missing until I started to regain it. My shoulders had been 'frozen' since I was a toddler (I spent time in hospital when I was about 10 months old with scalding to my upper back and shoulders). I'd never trusted my arms, never been able to do a cartwheel or play on the monkey-bars. I had no idea what it felt like to be able to spread my arms wide and free.
My posture was bad. Rounded shoulders, hunched positioning. Twisted body.
Headaches. Tension sudden narrow band of tension. Every time a slightly different line.
As some areas of connective tissue started to release the areas would seem swollen. The tight knots becoming bigger but softer. Under my jaw, across my chest, various areas on my arms
I had no idea how much movement I was missing until I started to recover. Over the years, less and less movement, more and more pain and tension.
I was considered 'bendy' and flexible. The way I sat, they way could twist my hips and turn my feet. I constantly figited (could never get comfortable) but I was already missing a lot of movement in my upper body by the time I started school
I had no upper body strength, I never trusted my arms to support me, monkey bars. I struggled with anything that involved curling my abdomen, whether it be gymnastics at school (I've never done a cartwheel), tumble-turns when swimming, doing sit-ups properly.
My upper body was rigid. I didn't turn my head, I had to turn my whole torso. And I only turned one way. My arm span was severely limited, the tenson across my chest back and neck stopping my trapezius muscles expanding to their full extent.
I kept on going, adding more damage to my body. I played sports, rode (and fell off) horses, worked hard at the local stables, being tough and bearing the pain because I didn't want to appear weak. I made it though university to fufill my dream of becoming a veterinary surgeon which was a very physical job, from lifting large dogs and horses feet. Wrestling with cows and operating in awkwards positions. I didn't make things easy for myself.
I had no internal reference for body alignment, no guide to re-set back to Base-Line healthy after trauma and inflammation.
I had a "tilted pelvis". My hips were uneven from tight muscles that attach to the pelvis (shortened lateral abdominals) and restricted tissues. I was unable to sit comfortably, I was always twisted in my positioning. Lying on my back and trying to do exercises on ground highlighted the imbalance.
If I palpated the back of my neck it felt as though the vertebrae ran in a zig-zag rather than a straight line. I couldn't bring myself to believe my neck was so mis-aligned and I explained it away that it must be due to my arm position affecting my neck as I reached to around to feel. The anatomy didn't feel right, but then it had always been like that as far as I could remember - Tight bands of tissue from the back of my neck to under my jaw.
lumpy muscles. tic-tac in my neck. I had subcutaneous lumps everywhere, thickened tissue in chains across my pectoral muscles, over my lower ribs.
As some areas of connective tissue started to release the areas would seem swollen. The tight knots becoming bigger but softer. Under my jaw, across my chest, various areas on my arms
Tilted cervix - smear test a few weeks after rock bottom
I learned to heal by working with the main muscles of movement, working through the stored trauma slowly releasing the physical restrictions and associated pain, regaining a full range natural of movement and working towards a better posture, physical alignment and a balanced body I now feel better than I ever have done before.
The way my depression lifted one day as I stood up from a roll-down convinced me it had been due to a physical cause. It was that dramatic. It wasn't "my" fault. It wasn't "me" that was broken - it was my body. I was physically wrecked. It was all the pain that had caused my depresssion.
A lot of hard work, pain and tears followed over the next few years, but from that day I had hope. I knew I could get better.
As I recovered I had to relive all the painful symptoms I'd had over the decades - releasing the physical tensions, slowly unravelling the physical mess that I was in, I experienced pains everywhere - shifting around and around. Serving as brief reminders of all the symptoms I've had over the years.
I could feel how the pains were never quite in the same place as my body threads were detangled. Whether it was the bands of tension over my skull or the pains in my knee, I experienced my pain almost in reverse and at a much faster rate - a year of pain in a couple of weeks. I was hard work but I could feel every day was an improvement even when the pain was severe. releasing stored pain - reliving it. re-awakening pain sensations. more soreness/stiffness the next day.
It's not easy living with constant pain. The myriad of pains and weird sensations, unexplained and doubted. It's nice to have that recognized by someone else, but the self-acknowledgment of my pain, of how real it was, how tough I'd actually been to keep going for so long, was a big part of healing for me. At first, reducing my self-loathing about my bad behaviours and emotional breakdowns. I wasn't to blame, it was part of the releasing of physical tensions, for all the times I fought back the tears and pretended I was OK. Letting my negative emotions, releasing the stress. Allowing myself to feel sorry for myself.
10months in - It's hard, well it's sore and a lot of crying, but I still feel so much better it's OK. feeling a bit sorry for myself, lack of recognition of my suffering for all these years, melodramatic or just honest? still hard to accept/admit. self consciousness/not wanting to be thought of as making it up.
Everything starts from finding your Base-Line, the body's core pillar of strength and the key to connecting body and mind so that you can feel how to heal yourself.
Please note, my 'fibro' diagnosis is both self-diagnosed and retrospective. I was too young to voice my pain when it started but I had the early signs of fibromyalgia before I started school.