Hives, joint problems, headaches and attention/information processing issues were part of my childhood. I was diagnosed with juvenile arthritis around age 9-11 and put on painkillers until I was 17 and had few white cells. I had had immune problems all my life and was used to infections running in succession, lasting months and not responding well to antibiotics. By 17 I had regular migraines and was on asthma sprays and thrush became my constant companion. By age 26 I had multiple simultaneous infections (respiratory tract, bladder, eye infections), chronic thrush, severe fatigue, and episodes of numbness, vein problems and swelling in my hands, very dark circles under my eyes and what would later be diagnosed as ‘severe reactive hypoglycemia‘. It was 1989 and when I was asked if I’d ever been tested for allergies, I was surprised such a thing could cause such ill health. I was referred to an allergy clinic.
The allergy clinic was run by qualified medical doctors. They injected me with a small amount of salicylate then measured the size of the histamine associated reaction. They had a scale of measurement for these bumps which went up to a score of 22. My score for salicylate allergy was 22. Ah, so that’s why aspirin swelled up my hands, feet, face and neck with edema!. I went home with a diet that was gluten free, casein free, no soy, low phenol, low salicylate and no refined carbs. I had no family support, no counselor. The withdrawal was horrendous. I made it and within 7-10 days I was becoming markedly better on all fronts. I remained relatively loyal to my low salicylate life for 21 years until I was 47 years old.
When I was 47 years old the immunologist told me in March that I was allergic to soy and peanuts which were both legumes. I went off all the legumes, tried some pea soup and had severe gastrointestinal problems (allergies sometimes won’t show until you are off all sources of the allergen before you retest). I waited a few weeks, tried pea soup again. Same thing. Legumes were out. Having unburdened my immune system (which was already neutropenic, IgG2 and IgA deficient) I found I could cope with higher levels of salicylate in foods. Without any retesting I decided I had overcome my salicylate allergy and two months later, by May my arthritis was pretty challenging but I paid it little mind, after all, I was 47. I was still only moderate in terms of the levels of salicylate in my diet. The following month I noticed a fast growing lump in my breast and was diagnosed with breast cancer.
I struggled to get veins for the IV and read that honey might raise them. Honey was an immune booster and high in antioxidants. It was also 18 times the high level of salicylates. But in my mind I decided 20 years of being low salicylate may have contributed to me getting breast cancer… after all, the high salicylate foods are the richest in antioxidants so I’d been off those for 20 years. I determined to make up for that and added stone fruits and berries back into my diet.
I made it through chemo with an immune and autoimmune system that was behaving very badly and dysautonomia. Neulasta came to the rescue, giving me enough white cells to finish chemo, antibiotics filled the gap, steroids reduced the level of autoimmune chaos, thrush dropped by throughout to laugh at my struggles and we tried to babysit the dysautonomia. The arthritis would back off in week 1 of each chemo cycle, but be back with a vengeance by week 3. On reflection this was probably because I was on liquid and soft foods for the first week and by default had probably reduced the salicylates that week.
Chemo ended after 12 weeks and I was onto Tomoxifen to keep any stray estrogen receptive cancer cells safely starved. My friend came over and we did an extraction of honey from our hives (yes, salicylate intolerant person keeping bees!) and I had so much honey I could have it daily. Bruises appeared out of nowhere, the worst of them a 12 cm! Capillaries in my feet were breaking, my joints were so bad at night I struggled to make a fist or walk for the first 10 steps. Next came hives and a mouth full of mouth ulcers. The sciatica I’d had since my teens came back. It was getting harder and more painful to walk. Finally I saw the GP and after not taking painkillers for back pain for 31 years I caved in and accepted NSAIDS and valium as a muscle relaxant.
Then came the pain storm. I’d had sciatica so horrid it made me depressed and cry but it had never caused paralysis. The stabbing pains and traveling dull aches suddenly hit in succession around my torso from my waist to my knees, circling me in what felt like a series of severely painful electric shocks. I made it to the bed and laid there shocked.
When I tried to roll over, get up, stand or walk, my lumbar and thigh muscles were ‘disconnected’. I could crouch but not get up though could walk my hands up my legs, pushing the knees, then thighs back into standing position and locking them there then climb my hands up the wall to straight out my lumbar spine in the absence of lumbar muscles to help me. I could shuffle but was virtually unable to raise my knees. I couldn’t get up stairs without using my hand to pull each leg up onto each step. These muscles had simply stopped talking to my brain. I wasn’t a paraplegic. The legs were working from the knees down and I still had bladder and bowel control.
I had severe back pain but now only the old sciatica I’d lived with since my teens. Slowly over the next two days the right thigh muscle began to reconnect, the day after that the left thigh muscle began to reconnect and then slowly the lumbar muscles began intermittently to work again. By day 4 I was able to get about with a cane to get me in and out of the car, up and down from seats and stop me falling when the muscles gave way again.
A trip back to the GP and he was concerned about the left leg. Asked to raise it the thigh struggled to respond. The muscle was far weaker than that of the right leg. He wrote a referral for an MRI with the queries: bone metastases? Transverse Myelitis?
Obviously, just out of chemo for breast cancer this was terrifying. Got the MRI and went to the GP for the results. We were so excited there was no sign of cancer nor TM or any MS related autoimmune myelin disorder. What there was was a degenerated spine with a plethora of anomalies to it.
The ligaments (Ligamentum Flavum and Posterior Element) that surrounds the nerves of the spinal cord had hypertrophy, meaning these had scar tissue that causes thickening and in my case this was constricting the space for nerves in the spinal cord and through the side recesses, essentially compressing the nerves. This hypertrophy is apparently associated with inflammation over the years so struggling with allergies and immune deficiency would not have helped. There was some minor arthritis damage to the parts that keep the vertebrae stable and two herniated disks with Schmorl’s Nodes protruding up into the vertebrae and out into the spinal cord, contacting more nerves there too. The ability of disks to herniate up into the vertebrae can be associated with a history of early D deficiency or Rickets and the two rather squashed sandwich looking vertebrae being invaded both also showed signs of earlier fractures that were deemed at least twenty years old if not from childhood. To add to this was a very flat lumbar spine which was can be a developmental compensation for abnormalities in leg development such as that associated with Rickets. The Osteopath and Physiotherapist both later gave the opinion that there were developmental abnormalities with the left leg which had limited ligament development, leaving the knee unstable and the hip socket was not as properly formed as it should have been.
The various places of narrowing of the spinal cord – what is called spinal stenosis. By all accounts my spine showed enough reasons for sciatica and chronic back pain and enough contact and compression of nerves to account for some degree of intermittent loss of muscle function. The severe pain storm was most likely a reherniation of an already herniated disk spilling its jelly like but highly irritant contents out onto the nerves.
The GP was concerned about my left leg and told my husband that if it got any worse to call 000 and get straight to the hospital. I thought he was being melodramatic. He explained that if the nerved to that leg get too compressed they can be damaged and I can permanently lose the use of that leg and become wheelchair bound if they can’t save the leg through immediate back surgery to relieve the pressure on the nerves. I was referred to a neurosurgeon to discuss back surgery.
I went to a physiotherapist who was wonderful. She showed me how to manage my pain and stop it spiraling out of control. She encouraged me to use whatever was still working in order to keep getting the muscles to come out of spasm and reconnect.
But there was something perplexing. The level of pain and disability was obvious enough and to a degree it fitted the MRI scans, but from the scans the issue didn’t appear to be as urgent as the actual presentation.
I remembered my salicylate intolerance, how it caused me swelling in my joints, hands, feet and inflamed my veins. Could all the honey have caused such acute levels of inflammation that it dramatically exacerbated inflammation in the spine and contributed to such swelling that it caused more serious nerve compression than the scan itself already showed?
Three days of being low salicylate and I walked into the GPs office significantly improved. The pain had gone from 6-8 out of 10, 80-90% of my day to just 2-4 out of 10 around 15% of my day. We all breathed a sigh of relief.
The osteopath and chiropractor each explained to me how inflammation in soft tissue wouldn’t show on the MRI so that when swelling of soft tissue filled up the remaining space around the nerves they’d have been more compressed than showed in the scans. Mystery solved. Even talking to the neurosurgeon on the phone (telling him why I didn’t feel I needed to come and see him now) seemed to understand this.
I’d never have imagined that salicylate intolerance could have resulted in enough pressure around an already compromised spine to reherniate already damaged discs, triggering a storm of acute sciatica enough to cause paralysis of all the trunk muscles via the process of pain inhibition nor that that swelling in a spine already having contact and some compression of the nerves could push that to a point that I could have ended up having immediate back surgery to keep me out of a wheelchair.
When we imagine food intolerances are all about hives or a bit of joint stiffness, we have no idea what other vulnerabilities these may be pushing in already compromised body parts.
And now I know more about my back than I ever knew. I understand the journey that probably began with Ricketsthen immune and autoimmune disorders and the supplements in late childhood that had me grow from 3ft 3″ at age 9 to 5ft 1″ at age 12 and how these things made my back what it is, and isn’t. I understand that my trampolining days are over, gardening limited, that I must never just from a table or chair for the rest of my life if I value my mobility. I understand that long haul flights are likely never going to work for this spine unless I fancy running the gauntlet again with potential back surgery.
Am I upset? Are you kidding? I can walk again, go for walks, even dance enough to make myself laugh. It wasn’t cancer, it wasn’t TM or MS, I’m not in a wheelchair yet and if I’m lucky won’t be or at least have a surgery option if it comes to that. Change is of course hard, and I’m only 48 years old. I still think I’m lucky.
I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.