First week post op

Recovering well! My right arm is hurting pretty bad; it’s constantly aching, feels very weak and it’s hurting to text and use my right hand. But the right hand side of my neck has been cut open so it is to be expected.

I lost my Fitbit and broke my other one so I treat myself to a new one, the special edition new versa.

It will help me with my recovery.; as it tracks my sleep, or lack of!! Mobility too. I am just in the process of getting it set up to nudge me to stand up and move around more………..setting a minimum steps each hour.

I am taking 30mg of oral morphine twice a day, 10 mg Oramorph (liquid morphine) and paracetamol in between these doses, every 4 hours.

I’ll finish this off later as need to rest my hand, I am struggling to text………..

I’m back!! Been in quite a bit of pain all day, in fact a lot of pain. Obviously made worse when I am moving, but, also aching and throbbing really bad when I don’t move. The painkillers aren’t working as well as they were a few days ago. I am only sleeping 4 hours once every 2 days. Which is flaring up my fibro and just generally making me feel like absolute hell………. Trying to get comfy is proving very challenging.

I actually thought this recovery was going to be simple compared to the last operation. I felt much more mobile and in less pain in hospital than the last fusion. The pain is changing though. All the anaesthetic they ply you with has worn off completely and the what I only can only describe as,; internal bruising sensation (as this is how it feels) has comes into play. I’ve also had to resort to super strength laxatives after the general anaesthetic. I lost 7 lbs in weight in just over a day. 😂😂

My daughter has had to do more chores as I now cannot clean downstairs either. My husband has had to run around like a headless chicken doing urgent items on my lists; he loves my lists I leave laying around 😂😂😂😂.

Dave and I watched motoGP today and both wore our shirts!! Dave had to help me get dressed as I could not get a t shirt over my head!!

I look rough as hell in the picture above, no make up and not much sleep!! It took my mind off things but not the pain! You know you’ve got bad pain when something your passionate about doesn’t help!!

I have spent a little bit of time reading up on other people’s experiences recovering from an ACDF (double fusion). This has made me feel more positive. We all heal differently and some of us have multiple issues. I find it useful to go into surgeries with my eyes wide open as this reduces post op stress and anxiety. This site is amazing here.

This site has some really interesting myth buster information about neck collars. My consultant won’t use them as he said that they restrict movement too much and are counter effective in recovery. Trouble is sometimes I forget like today, looked up and oh dear the pain was excruciating for over an hour 😂😂😂😂😂. Click here

If this pain continues tomorrow I will have to ring the doctor as I need sleep and have lost 3 nights sleep in a week already, this means I am probably going to get germs!! That would not be a great idea right now…….,,

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First week post op

Recovering well! My right arm is hurting pretty bad; it’s constantly aching, feels very weak and it’s hurting to text and use my right hand. But the right hand side of my neck has been cut open so it is to be expected.

I lost my Fitbit and broke my other one so I treat myself to a new one, the special edition new versa.

It will help me with my recovery.; as it tracks my sleep, or lack of!! Mobility too. I am just in the process of getting it set up to nudge me to stand up and move around more………..setting a minimum steps each hour.

I am taking 30mg of oral morphine twice a day, 10 mg Oramorph (liquid morphine) and paracetamol in between these doses, every 4 hours.

I’ll finish this off later as need to rest my hand, I am struggling to text………..

I’m back!! Been in quite a bit of pain all day, in fact a lot of pain. Obviously made worse when I am moving, but, also aching and throbbing really bad when I don’t move. The painkillers aren’t working as well as they were a few days ago. I am only sleeping 4 hours once every 2 days. Which is flaring up my fibro and just generally making me feel like absolute hell………. Trying to get comfy is proving very challenging.

I actually thought this recovery was going to be simple compared to the last operation. I felt much more mobile and in less pain in hospital than the last fusion. The pain is changing though. All the anaesthetic they ply you with has worn off completely and the what I only can only describe as,; internal bruising sensation (as this is how it feels) has comes into play. I’ve also had to resort to super strength laxatives after the general anaesthetic. I lost 7 lbs in weight in just over a day. 😂😂

My daughter has had to do more chores as I now cannot clean downstairs either. My husband has had to run around like a headless chicken doing urgent items on my lists; he loves my lists I leave laying around 😂😂😂😂.

Dave and I watched motoGP today and both wore our shirts!! Dave had to help me get dressed as I could not get a t shirt over my head!!

I look rough as hell in the picture above, no make up and not much sleep!! It took my mind off things but not the pain! You know you’ve got bad pain when something your passionate about doesn’t help!!

I have spent a little bit of time reading up on other people’s experiences recovering from an ACDF (double fusion). This has made me feel more positive. We all heal differently and some of us have multiple issues. I find it useful to go into surgeries with my eyes wide open as this reduces post op stress and anxiety. This site is amazing here.

This site has some really interesting myth buster information about neck collars. My consultant won’t use them as he said that they restrict movement too much and are counter effective in recovery. Trouble is sometimes I forget like today, looked up and oh dear the pain was excruciating for over an hour 😂😂😂😂😂. Click here

If this pain continues tomorrow I will have to ring the doctor as I need sleep and have lost 3 nights sleep in a week already, this means I am probably going to get germs!! That would not be a great idea right now…….,,

Ouch

Tried to shut the window and hurt my neck whoops. Chef closed the window as he heard me crying!! Don’t think I particularly hurt it, it’s just that the iv meds have worn off. I’m hurting like hell. It’s pulling, throbbing, can’t turn head to right, it’s aching……….

I can’t brush my teeth with my right arm, can’t push the bed trolley off my bed 😢. You get complacent with these things. ‘Oooooh it’s not that bad!! Then the meds wear off and me sitting in the chair, strolling around, brushing teeth etc. I’m now in a lot of pain’. Not much I can do as only so many meds you can take. I wish they had put on the morphine pump like they promised!!

Oh well 😔 might have to get the music on my headphones and start meditating!! Can’t wait to get home and maybe ask the doctor for a pain patch!! Better than popping 12-16 pills a day; deffo don’t want to get up to 25 plus a day again……….. at least it’s constant relief 👍

Diagnostic diet part 2 and Fibromyalgia 

As promised, I would send you an honest update on how my diagnostic diet is going.  I started before I spoke to the consultant and completely ditched all processed food, so nothing came out of a packet.  I lost 7 lbs in 2 weeks and felt so much better; less fatigue and reduced muscle pain.  

I went into the diagnostic diet for 2 weeks to cut down my diet to a very basic bland hunter gatherer type.  This basically removes all potential foods that could cause a reaction with my nervous system.


You only eat the highlighted foods for the first 2 weeks.  You track your symptoms and at first you feel worse; giving up coffee gave me a migraine.  I lost 12 pounds in 2 weeks!!  

After the first 2 weeks my daily headaches disappeared, my fatigue was reduced, my muscle pain went away and the nerve sensation issues I had like tingling, itching, pain upon touching disappeared.  

I was just coming out of a flare up when I started the diagnostic diet and my sleep was terrible; 7 hours over 3 nights.  I asked for 5 days worth of sleeping tablets and usually they take my sleep from 3/4 hours to 4/5 but this time they worked great.

It took about a week to get over stopping the sleeping tablets (this is why I don’t like to take them)! Now I’m sleeping much better, deeper and longer 5/6.5 hours. 👍

Switching to fresh food only I lost a total of 1 stone and 7lbs in a month and never went hungry.

My moods are better, less extreme and my menstrual cycle was less severe.  I haven’t had digestive issues either.

The next phase of my diet is to slowly start bringing in the rest foods not highlighted on the photo above, one by one and track symptoms.

So far I’ve been able to eat asparagus, grapes, veal, tuna steak and tomatoes.  

I’m still not able to exercise until I’ve finished the next month as this could skew the symptom tracker.

I can’t wait to restart proper exercising as I’m so weak, getting out of breath walking up hill or up or down steps.  I couldn’t even keep up with my 67 year old dad!

It’s not easy as you have to have willpower and you have to track everything; symptoms and weight, which will start to increase if my nervous system reacts to it.

I have a comprehensive stool analysis kit to do and send off but I need to wait till I get paid as it’s £160 for the analysis; 3 collections and I have strict guidelines to follow including mixing with liquids, dealing and posting lol.  I have a list of other tests to do too that I have to pay for as the NHS has refused, simple blood tests.

I am willing to do anything to feel better and the Airedale Allergy Clinic here have done more for me than the NHS have in over 3 years.  The NHS don’t have the funding or support to investigate or locate cures for conditions like Fibromyalgia.  The US are way out front in this area as it’s about making money and a cure or even medications or treatments would rake in millions.  GPs are trained to give us meds and there aren’t any specialists only pain or arthritic specialists available in the UK, we are sent to these for more band aid treatments for our symptoms.  What we need is locating and dealing with the root cause!! 


Feel free to ask me any questions!  Or join my page here for more insights and research sharing.  

My first consultation at Airedale Clinic

Airdale are a private clinic that specialise in finding out what chemicals and foods affect our immune systems and cause medical problems, treating the root cause rather than masking the symptoms with medications.  You can read more about the great work the clinic do here.

When I was tracking my symptoms with a log I found a number of things that affected my symptoms of fatigue and stress:-

  • Sleep deprivation
  • Stress
  • Over doing things
  • Food and drink
  • Chemicals 
  • Hot weather
  • Dehydration
  • Injuries and other painful medical conditions

But some of these things affected each other too, for example certain foods affected my sleep, an injury affects my fatigue etc.

The first consultation was done over Skype to reduce my need to do the 1 1/2 hour round trip to Keighley which I would not have been able to manage.  It was with the Co-Director Dr Apelles Econs, lovely man, very caring and understanding and very knowledgeable about autoimmune disorders and allergies.  He gave me a frank explanation of how fibromyalgia works and affects the nervous system and what can be done to improve symptoms.  I have attached my treatment plan for you to review below:-


I want to share my journey with you to allow you to see what I am trying and what improvements I have.  There is no cure for fibromyalgia and the NHS are only interested in giving us pills and potions to band aid over our symptoms, not to treat the root cause.

The initial consultation was £175 but you can’t put a figure on good health.  The GPs only know how to prescribe meds or do referrals to specialists, but in the UK there aren’t any for fibromyalgia.

I recently had a bad flare up due to injuring my knee falling off a motorbike in training, I actually fractured my knee and again it took 2 months under the creaking NHS to find this out, as I had to wear a leg brace for a month restricting my movement the immobility flared up my fibro and back pain to the worst levels I’ve ever experienced.  

My healthy diet lapsed due to laziness and I put on a stone in weight and felt dreadful.  You are what you eat after all.  I gave myself a kick up the backside and ditched the processed foods and lost 7lbs in 3 weeks, since starting my diagnostic diet as recommended by the Airedale Clinic I’ve lost a further 3 pounds in the last 5 days.  At first I felt lethargic, had bad headaches (gave up coffee), could not sleep at all and my aches and pains got worse.  But I’m now on day 5 and I’m feeling a little better, I was in another mini fibro flare up due to overdoing things at work but I feel the diet is helping me recover quicker.  The only problem I have right now is very bad lower back ache which is hurting every time I remain still, especially when sitting and it’s worse when I lay down.  The only foods I can eat are detailed below, highlighted:-


The diet helps to detect whether food is affecting my condition to track how I react to the natural diet. It is only for 2 weeks and quite frankly I would do anything to feel better, even as one person put it yes I would sell my soul.

This is one of the pages out of my diet book:-


I have also obtained my full list of tests and results to share with the clinic from the NHS and I have a list of potential tests should I want to go ahead with them privately:-


I have ordered the stool test to start with until I know whether I have had any of these on the NHS, which I doubt as the NHS wouldn’t treat the outputs of most of the above tests.

I have a follow up consultation on the 11th to discuss how I’ve felt the diet has gone and discuss next steps.  Thankfully sebsequent consultations are only £90.

I have bought a vitamin B12 spray as this vitamin can help with fatigue, aches and pains, the tablet form is not adequately digested by our systems, but the spray works best, the gold standard are vitamin B12 injections.


I will update you on my progress with honesty and complete openness.  Maybe there is something I am doing that you would like to try.

Please feel free to ask me any questions, my Facebook page is updated on a more regular basis and is available through my blog.

Get every possibility checked at the doctors

Since having a laparoscopy I’ve been kept awake and had to change my clothes several times and even my bedding due to hot and cold flashes.    The doctor sent me for a blood test to make sure my stomach wasn’t infected and to check my thyroid which both came back normal.  It’s probably hormonal so I’ve ordered a herbal supplement on the request from my doctor.

I have persistent digestive problems and have lost 7lbs in 2 weeks since my laparoscopy.  This is being checked out from the biopsies I had took whilst under anaesthetic.  Certain foods are setting this off so I am keeping a temporary food diary to remove the culprits.

I was took into hospital by the NHS a number of weeks ago with crippling pain with a suspected appendicitis, all the hospital found was a cyst and they put the increased pain down to my fibromyalgia.

I guess what I am trying to say is not to just take the diagnosis as ‘oh it’s because you have fibromyalgia’ I mean we know our bodies better than anyone and I knew there was something going on inside my abdomen.  Unfortunately the NHS told me to go through the long process of getting referred, waiting for a consultant etc.  I decided to go private through my healthcare at work and scheduled a laparoscopy.

When I went in for the laparoscopy my bowels were severely inflamed and so was my uterus and it was covered in fibroids, plus I have 2 extremely large internal varicose veins.  The consultant removed the ovarian cyst but didn’t want to take it any further until the biopsy results come back.
I’m not telling you this for sympathy I’m telling you this as an example of other things that could be going on inside your body that COULD contribute to your fibromyalgia symptoms.  Inflammation isn’t good for a person that doesn’t have fibromyalgia nevermind someone who has!!

If you feel you need further tests or need something investigating then I would recommend making an appointment pronto!