About – How did this all start?

So where do I start?  I fell at work 9 years ago landing on my right hip, black ice in the car park, I felt the pain immediately.

I was off work 5 weeks had to come back as they were threatening to pull me off my home study CIPD I was halfway through.  I was on many a painkiller even back then.  From that day forward everything changed!

I had an MRI and it was then I found out my spine was degenerating at an accelerated pace.  One disc was split.  I suffered lower back ache for years on and off, it got worse when I got a job in Coventry and I had to travel everyday.  3-4 hours round trip.  I used to have to crawl out the car.  It was only when I was threatened by a colleague at work who was under serious stress did I get the push I needed to apply for other jobs.

I was headhunter for a particular job and it was the best thing that could have happened, not only did I get a fantastic package deal when I became a senior manager but private subsidised healthcare which saved my life!

I continued to have back pains and after another fall, a drunk friend was messing about and landed on me on top of my tv cabinet I lost another disc, but this was much more serious.  I ended up with Spondylothesis.  My consultant told me I had the spine of a 65 year old morbidly obese women and there I was at 39 back then and a size 10, super fit as I still managed to undertake gruelling interval training right up to 6 months before my operation.

I ended up on 25 plus painkillers a day just to function, I didn’t sleep, felt hungover and fluey every morning, the pain never went away it was in both legs,  sciatica.  The consultant said I was too young for an operation and he would only do it if my spine was twisting, I collapsed in tears not able to deal with the pain anymore and begged him to help me.  He sent me for an X Ray and I bent forwards and backwards, crying my eyes out under the machine.  I got back to work and 48 hours later came the call, from the consultant, who told me I had a twisting spine.  It was collapsing into my sciatic nerve every time I moved.  No wonder I was in agony.  He booked me in to have the disc, bone removed and have a metal cage to hold my spine in place whilst bits of my hip bone were placed into my spine in place of the disc.  This was 5 days after the call.

I was 100% optimistic I’d make a fully recovery and get back in the gym and out with my mates again back to the active social life we had at the time.  Now the details of that recovery are on my linked blog called ‘Turning my wounds into wisdom‘. This goes through the hell I was in after major spine surgery so I won’t repeat it here, but one statement sticks in my mind that my pain consultant told me ‘your personality will completely change after you have a fusion’ I remember laughing at him at the time, but it does!

After my operation I put my symptoms down to post operative recovery.  With my left leg completely cured my right sacroiliac started to hurt, 2 weeks after the operation and it’s only ever stopped twice in 2 and 1/2 years due to a spinal injection on 2 occasions that worked, 1 occasion he hit a blood vessel and created a blood clot in the joint,ouch that was painful I can tell you.  It’s a tricky joint to inject, even under X Ray.

Not only do I have permanent pain in my SI joint. I have a sprained ankle (opposite leg) that’s took 18 months to heal through hard painful physio.  My neck, shoulders, head, upper back and arms hurt.  My thighs hurt to touch, I can no longer have massages on my legs.  I get pins and needles in my body and face, burning sensations, blue numb feet and hands in winter, migraines that put me in hospital.  Monthly ‘womens’ pains that put me in bed on Morphine for the day.  IBS sometimes.

I bought a Fitbit as I wanted to prove to the doctor how little sleep I got.  Averaging 1-3 hours a night, after 3/4 nights managing to total 10-12 hours in total.  I couldn’t remember simple stuff, kept dropping things.  Got muscle wastage in both legs.  Sometimes blurred vision, sensitive to light and sound, got very depressed and started panicking and felt anxious.  Sometimes struggling to talk.

I came off all my pain pills but still woke up feeling hungover and like I had the flu.

The exhaustion was the worst I just had no energy and couldn’t manage housework anymore.

Finally after a million and one blood tests the doctor uttered the words FIBROMYALGIA, what the hell I said isn’t that an old persons disease, ‘not really’ he said ‘you have had a fusion, it’s a big shock to the body and that is why you have it.’

So operated on 2 1/2 years ago, only diagnosed in May 2016 so here we are!!

Hello everybody and don’t worry I needed to get the boring bit out of the way first!  I have a twisted sense of humour so hopefully you’ll find bits amusing as I relax into this blog!

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6 thoughts on “About – How did this all start?”

  1. Fibro can be Hell. I’ve had it since my late teens, I’m 66 now. I also have arthritis, few other things, been on anxiety and depression drugs since 20s, 30s (I’m 60s now).. Advil doesn’t seem to help, I”ve developed memory problems for yrs, (from meds?).. so sigh.. I feel better than worse, better, worse, but as getting older (67 soon) getting old age problems too. Sometimes fibro and arthritis so similar or combines, Memory problems for me, but they put me on meds yrs and yrs. ago that can make memory worse, and expect me to get off of them now??? God bless all who have any disease,, we humans try our best, I guess drs. try their best, but..

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    1. Bless you Linda. Memory problems are a worry. Mine is so bad sometimes I struggle to remember anything. I think people think I’m a bit thick when they meet me as I struggle to speak sometimes.

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    1. I take a super Omega supplement which contains all the Omega vitamins and fibrolief which contains 21 vitamins and minerals. Google ingredients and the first search option gives you the full breakdown and what they are for. I do feel much better after taking this, but it took a few weeks to kick in x

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  2. please help, been diagnosed with Fibro got so mnay symptoms its unrea. ll can not do anything in constant chronic nerve pain, pins needles, elextric shocks burning , crawing and tingking it orful. is there anything I can take for this. Wsa severally restless an damged sitting bones and feet can not bare to walk need help but gp etc are not helping me so sorry for the mistakes but I am on fire trying to do this. I have had enough I am sufferin so much I want to end all this. I don’t know what else to do. I have no help .alone 24/7 in my room bedbound in a mental health hospital unable to get food or water. how can I get treatment I need when I can not get to the gp? I look like a freak and an not wear my clothes and shoes as I get so much pain from them and anything touching the skin is painful!!! I have long standing physical issues . was diagnose with Fibro in January. can not type any more so ill and in all kind of pain etc.

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    1. Sounds like you’re having a bad flare up. When our nervous systems flare up the symptoms increase to debilitating levels. Doctors cannot help cure the pain, only we can do this by slowly finding out what causes us to have flare ups. Take a look through my blog for some guidance, I’ll give you a brief run down of what can cause these flare ups; stress, doing too much (activities), taking too many medications, poor food and drink choices, illness, insomnia or injury. I kept a daily log and noted how I felt both mentally and physically and rated the symptoms in severity from 1-10. I noted what activities, food and drink I had done recently and I did this for 3 months looking for patterns. I noticed that if I did too much; for example, too much housework or had say been shopping, then cleaning in one day that this made my symptoms worse. I ditched several of my medications as these were making me feel worse; they kept me awake at night, gave me fatigue and I felt every side effect there was. My food and drink choices were affecting how I felt, it seemed everything I ate made me feel worse. In my blog I explain how the diagnostic diet helped reduce and even got rid of some of my symptoms.

      Fibro is a condition that affects your nervous system, it makes it oversensitive to chemicals, some foods and drinks, temperature, light and sound. I stopped using all chemicals and switched to natural organic products; even my makeup is organic. I threw out all my cleaning products and now make my own. I only use 50% white vinegar and 50% water in a spray bottle. I don’t use use fresheners, only use organic candles. I don’t eat any processed foods, all the food I eat contains only natural ingredients. I don’t drink alcohol, don’t smoke and drink herbal tea and water with the occasional pure juice. I only use brown foods and very rarely such as brown pasta. I tend to use pasta substitutes. Increased my consumption of fish, white meats and loads of vegetables. I restrict the use of nightshade vegetables. I don’t eat any sugar apart from the odd treat. No gluten and very rarely wheat. I also ditched eggs and chicken and only eat organic of these very very rarely. I used a hepa filter in my living room and bedroom to help with dust, allergies and pet hair and clean these filters once every 2 weeks. I also force myself to walk and do stretching (gentle yoga) every day. Becoming immobile will make your pain worse as you stiffen up and get more pain. I can no longer do weights or any type of aerobic exercise as the muscle pain afterwards is unbearable.

      I bought some uv glasses to use when it’s dark to shield my eyes from the blue light in lightbulbs, the tv and electronic devices.

      I have a strict bedtime routine; go to bed at the same time every night and wake up every morning at the same time. I sleep mostly in the spare room as I fidget too much, which isn’t fair on my husband. I have baths with magnesium flakes I put in the bath, I bet them off eBay in 5kg buckets. I also take a large dose of vitamin D and folic acid. I also have large vitamin B12 injections I self administer 3 times a week for fatigue reduction.

      It has took me 2 years to improve my symptoms, I rarely get bad flare ups now. I used to get them that lasted for 2-4 months at a time, was always off sick and can barely get out of bed. I only slept 0-3 hours a night and was in 5 different medications. The only thing I now take for fibro is an anti depressant to help regulate my moods and increased seretonin helps with pain relief. I ditched all the others very slowly by weaning off them over 6 months. I only take pain killers now for my back disabilities for bad pain and during bad flare ups. Changing my diet has had the biggest impact. I cook mostly fresh food and make lots using a hot pot etc and make healthy food in freezer boxes I warm up in the oven. If I eat any ‘E’ numbers or food with MSG or sugar in, I get poorly. I also lost 30 pounds in my diagnostic diet.

      The best thing I did was learning to meditate, I do it as often as I can and also do little mindfulness sessions using free apps like buddhify throughout the day, this stops me stressing about the past and being anxious about the future.

      I cannot do many things I used to before. I cannot walk it travel far. I cannot go to the gym anymore, do all my housework (I pay my daughter to do it), my husband cooks when he’s back home at the weekend and I made my gardens maintenance free. Some great advice I got was to get people to help with the things I have to do, in order to save energy for the things I want to do.

      You need to allow yourself to grieve for your previous life (before fibro) and make drastic changes to your lifestyle, in order to build a new decent life. There is no cure for fibro and no doctor can give you a pill to cure you. But you can make changes and over time your body will adjust and the symptoms will reduce.

      I used to be suicidal but now I enjoy life, even with fibro. I still have bad days where I cry with frustration, but on the whole I am much happier. It doesn’t happen overnight and with having to constantly have back surgeries to help my crumbling spine life is hard. But I always think about people with cancer and then realise that life isn’t that bad. Fibro won’t kill you, it doesn’t shorten your life, but it is very debilitating when it’s bad, you have to constantly analyse everything you do. I cannot go shopping anymore, go on long holidays with flights. Can no longer go clubbing or even do my own housework. But by using meditation I can now focus on all the things I can do. I bought a kindle and I read a lot of self help books and they have really helped me.

      Hang in there, you will get there, you need to prioritise your mental health; learn to meditate daily, start keeping a log of symptoms and activities and change how you live, what you do and most importantly change your diet and keep moving.

      Good luck x

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