Have you tried?

Yes, the answer is YES!

Ask anyone with chronic pain or chronic illness, especially those who’ve gone past the 5 yr mark if they’ve tried…x, y or z and the answer will be yes they’ve tried it, they’ve read about it and probably carried out their own mini experiments.

Chronic illness/pain makes you try anything just in case theres a miracle waiting for you.

Some things help, many things do not, its a matter of trial and error.

Diet and Supplements

The internet is full of advice on eating habits that claim to change your life.

‘Clean eating’, ‘anti-inflammatory diets’, ‘adrenal fatigue diets’.

So many websites making the same claim, follow this diet and you’ll feel better, and to feel even better you can buy my book, supplements, personalised plan…££££

I’ve tried cutting out dairy, gluten, refined sugars, animal fats, eating less meat, eating more meat, super foods, vegan diets. I’ve tried an alkaline diet which conversely means consuming acidic ingredients like apple cider vinegar and lemon water, there’s some dubious science behind this theory which sounds convincing. It didn’t work, but I quite like the taste of both vinegar and lemons so occasionally restart this.

A friend gave me a book called “food is better than medicine” it was a great read with detailed instructions of what to eat and what not to eat for different conditions and ailments.

What i’ve discovered from all this experimentation is that a common sense approach works best, eating lots of fruit and vegetables, healthy fats and grains makes me feel healthier and have less pain than eating a load of stodgy, fatty cakes and biscuits..sadly! Caffeine and sugar are not the friends they once were.

So are there any actual super foods? For me consuming turmeric daily either as capsules, powder or root works as well as any prescription or over the counter NSAIDs for pain and inflammation to my joints and has the added benefit of not wrecking your stomach. My family have come to expect and accept that much of our food now has a yellow appearance!

I’ve tried glucosamine, fish oils, magnesium and zinc for muscle and joint pain, none of which has helped in the least. i tried the supermarket brands and the expensive health shop brands, just in case.

Alternative Health

Having given up with western medicine for a while, 2016 saw me embark on a somewhat desperate alternative to drugging myself.

Acupuncture-I have had courses of acupuncture at various points in my life, provided by private practitioners and by the NHS. An NHS physiotherapist with a special interest in pregnant women induced my second baby through acupuncture and my body responded beautifully. Another NHS physiotherapist treated me for chronic pain for my allotted 6 weeks with great affects. My body likes acupuncture. I now see a wonderful private practitioner every month who treats me for chronic pain, inflammation and for the life long affliction of being a restless fixer, in short she calms both body and mind in a way nothing else does.

Chiropractic and Osteopathy- I’ve seen many different specialists for musculoskeletal pain. Chiropractic treatment doesn’t really help me, it did help to realign my compensating posture but my body is good at self protection and didn’t like this much. I saw a marvellous calming and gentle cranial osteopath when the pain and illness was at its worth who gave me great hope. To this day i’m not sure what he actually did by gently touching my back but I walked in unable to touch my toes or lift my leg or sit down and walked out feeling as light as a feather. This worked well and I recommend this to everyone but its not a long term solution…it didn’t come cheap!

Hypnotherapy- This was an absolute last ditch, what have I got to lose, i’ll try anything, approach. And to my astonishment it worked for me. I know it doesn’t work for everyone. It worked because I learnt that the power of my mind was far greater than i’d previously imagined. It worked because I let myself believe and took a chance. To anyone who hasn’t experienced chronic pain and doesn’t know about the mind/body connection this all sounds like nonsense I know. I learnt that during hypnotherapy I wasn’t in pain and that was amazing. At first during the sessions I had 2 hrs per week when i wasn’t in pain, somehow through some crazy mind magic another person stopped my pain by talking in an odd way! But as the treatment progressed I found it frustrating that if I could be pain free for 2 hrs without anyone touching me or drugging me then why couldn’t I do that myself? Was it all in my head after all? There is so much I could write about pain and whether its in your head or *there* (pointing to body part that hurts) and its a fascinating and infuriating thing to live with but thats a whole other blog entry! Eventually I did learn to put myself into a trance (again for some I know how this sounds!!) and remove the pain myself. Its not a practical solution and you can’t do it all day and it doesn’t remove all pain but a year after a first saw the hypnotherapist I can still “when i’m ready R.E.L.A.X” at will. 2017 will likely see me have 2 surgeries, one fairly major, one just a minor organ removal (!) I plan to consult with my mind magician once again to help with this.

Exercise

I’ve had to give up running, even when I feel well and am in less pain (i’m never pain free, never, ever, never) running is no longer an option, it hurts at the time and then for days later the searing pain through my pelvis is unbearable, so not really worth it for the 40 minutes of lovely endorphins.
Because my joints and muscles are so tense and stiff most of my exercise is about stretching and loosening them up. I practice a mixture of yoga, pilates and physiotherapy stretches every day. Its my own made up routine adapted from all the different classes and specialists i’ve seen.

I also do a work out based on exercises the NHS chronic pain team provided and those a private personal trainer gave me. These are based on functional fitness. Due to my pelvic and hip injury I massively favour my left side, so I sit with all my weight shifted away from my right hip, I often stand on one leg, and I limp and walk on tip toes on my right foot. All of these compensations are terrible for posture and cause greater problems. Its a huge effort to remember to sit straight even though it hurts.

Swimming is helpful. Exercising till i’m tired is not. Autoimmune diseases do not like you getting tired, they make you pay for your wild ways. Pacing pacing pacing…I hate pacing!

Medicine and pain relievers 

I’ve used TENs to reasonable effect, I think its purely distraction but it gave me something to do while in labour and its worked for chronic pain, even if just to give me some feeling of control.

Right now i’m loving those stick on heat pads, all this advice for ice on inflamed joints sounds like torture to me! As i’m writing this in January its cold and keeping my joints warm is essential in reducing pain.

I’ve tried as many analgesics as the NHS can throw at me. Yes I have tried taking regular paracetamol (remember when they tell you that when you’re in labour, hahaha, its doesn’t work for chronic pain either). I have taken all the stomach destroying NSAIDs there are and the ulcer prevention medicines to go with them.

I’ve tried the anti-convulsants to treat the neuropathic pain, if you want to check out of your life for a while where you can appear normal but feel nothing, Pregabalin or Gabapentin are both good options. I didn’t and don’t ever want to return to these, that said I know they are incredibly effective for some people.

Then there’s the good stuff. Tramadol with a Diazepam chaser and you’ve got yourself a night you’ll readily forget!! Its easy to joke and proves i’m not dependent…right?! When pain was at its worst these two drugs were essential for me to cope, succumbing to an opiate haze where you can still bear to have your children touch you and the sound of their voices doesn’t physically hurt but you can’t lift your sedated body from the sofa is infinitely better than days crying and writhing and all the thoughts that go along with that.

And then after i’d exhausted a long list of medicines which mostly just added other problems along came my miracle.

 

Cinchona Bark or Quinine as its more commonly known is gradually giving me a taste of how life used to be. When I felt well and wasn’t in pain. I’ve been taking the max dose of Hydroxychloroquine for 4 months now and feel better and better every day. Pain is often measured on a scale of 0-10, this isn’t always helpful in chronic pain because the pain might be a 5 but its every damn day and the exhaustion and subsequent impacts add up to more. The pain is 5, the suffering is 11. So the function percentage scale is better. Over the past 4 years taking into account pain, fatigue, fever, loss of mobility, i’ve been as low as 20% function and average at 40%. Introduced to Hydroxy and i’m up to 70%.

Quite coincidentally Quinine just happens to be an essential ingredient in a G&T, its like my body knew this all along!

(you’d have to drink about 200 litres of tonic every day to get a therapeutic dose, in case you’re wondering!!)

So heres hoping that 2017’s surgeries can add to the list of ‘what works’ as well as the “have you tried?”.

Keep experimenting, keep hope alive x