Routine and sticking to them

It’s so important to find a routine that works and stick with it. We are creatures of habit………….

How many times though can you remember starting something with good intentions, only to let it go, then wonder why am in so much pain, why can I not sleep, why has my fatigue worsened, why am I having to take more painkillers??? Then you remember, whoops!! I stopped doing ‘X’!!

I struggle to get up at the same time every day, I’ve been awake since 4am for the past few nights due to restless legs; pain from my neck that travels down into my hip, develops into nerve pain which then goes into my arms and down my groin into my right leg. It’s one of the most annoying sensations, especially when it also travels into the arms. Now, if I get rid of it and go back to sleep I ruin my entire routine and feel dreadful and can’t get to sleep the next night. But, if I force myself to get up, Go for a walk, use a heat blanket on the source of the pain or massage the area, then just maybe things will be okay? Apart from the fact I’ve only slept 4 hours and feel like dog shit on a shoe 😂.

Constant pain causes depression, anxiety and fuels negative thinking; what if this never goes away? What if it gets worse? Blah blah blah!! But really, where does all this negative thinking get you? Absolutely nowhere that’s where!!

You have to learn to allow the thoughts to come and go, every single person has doubts, worries and concerns, everybody……. meditation allows us to not let these thoughts take over, you just learn to let them come and go, acknowledge them and let them go………..

Now last week I was so depressed, so down, that I had already planned on taking medical retirement from work, being bedridden and possibly hooked on oxycodone for life!! I mean no one can see the future, I could actually make all this happen if I wanted to but I won’t, I’m not a quitter!

Now this week I feel more optimistic, I am learning to take things one day at a time. I had got a plan in my head to get back to work in August, I know now that that’s impossible, so I’ve got another sick note, I have set myself a daily routine of exercise (which consists of 2 x 5 minutes walks and 2 types of neck exercises) and lots of rest. I have raised a few ideas with work that may get me back to work earlier, if the answers are no, then I’ll remain off for as long as possible and that’s what I told them!!

Everyone has good and bad days, but who decides which they are? We do. Every day should be a good day, I don’t have cancer, none of my disabilities are going to kill me, the surgeries could have, but they didn’t. So every day is a good day isn’t it?

So here I am 7 weeks post surgery, the pain is constant, it ramps up to levels that make me cry out, but then it reduces to just an awful niggling constant ache with electric shock zaps, I have numbness and weakness in my right arm. Numbness and weakness in my right leg. Constant headache, migraines in the rear of my head, ear ache and jaw ache in the right hand side. Muscle stiffness and pain in my head, neck, right shoulder, upper back right side and into my arm. I am also still struggling to swallow properly. It is far worse than just after the surgery but the Oxy makes it manageable. I am using strong cbd mid morning and mid afternoon and it’s actually helping. Yay. 30mg Oxy at 6.00am and 5.00pm. I need to start weaning off these meds soon before it’s fully in my system, back down onto morphine, but not yet. I have a plan to help me reduce down, I’ll try again in another week. 👍

I must stick to my routine! More information about my 2nd surgery is here, in case you are thinking of having this yourself.

Having ANY surgery with fibro is very very challenging and much much more painful.

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Reducing pain meds

I’ve never took Oxy and personally I would never consider this medication for fibromyalgia. It is much stronger than morphine and much research has shown that opiates/opioids are not effective for chronic/long term pain. They can also increase fatigue and insomnia. For the post operative pain I’ve had it’s been a double edged sword. I managed to cut out 90% of my pain but then on the flip side it makes you over complacent, so I do ‘stuff’ then afterwards I’m in agony! I wash too many pots or do some clothes washing 😂.

I am now weaning off; I’ve reduced my immediate release Oxy by half, I’m only dosing 3/4 times a day with 5mg dose. I’ve reduced my slow release dosage from 40mg x twice a day to 30mg x twice a day. The pain has increased quite a bit but I’m using heat/ice alternate to help. I have shooting pains down into the right hand side of my body down my arm and it’s hurting to text which is why I’m not posting often.

I’m walking twice a day, up-to 5000 steps a day. I’m also lightly jogging a little with the walking. Taking my little dog with me but holding the lead with my left hand. I’m doing my physio twice a day;

  • Sitting in a chair twice a day for 10 minutes at a time.
  • Turning my head to look over both shoulders
  • Bending my ear to my shoulders both sides
  • Lifting both arms straight over my head then back down to the sides
  • Squats with arms out front of my body

I am feeling confident with my physio and recovery, but I do also know that without the Oxy I would be in agony right now. I opted to go onto this medication as the doctors kept raising my dosage on morphine and it was slowing my heart rate right down and I was struggling to breathe. I have had no such problems with Oxy, I don’t feel high, I just feel great, it has however blocked out my fibro symptoms, I am not looking forward to these returning. I guess this is why they are abused so much. I don’t feel high at all as my opiate/opioid tolerance is very high. I have had a few weird dreams but nothing major. I’m taking 35mg liquid laxative a day as my digestive system stopped working and is excruciating otherwise.

My little doggy is really helping me.

I am proud that I’m now sleeping well, it’s took 2 weeks post surgery to get here, my exercise is walking only at this moment as I cannot manage anything else.

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.  

Trying to have a life and fibromyalgia gets in the way, sometimes

So I’m due at a 3 day festival this weekend.  I have a nice warm comfy camper to sleep in but the constant rain does cause havoc on my already fragile spine and fibromyalgia.  Last year was torrential rain and flooding for the whole weekend.  At this moment I don’t want to go I am so fatigued I hurt all over, even blinking hurts and writing this on my phone hurts.  I have 0 energy and today I spent my lunch break laid in the back of my camper in the car park at work just with my eyes closed resting.


The fatigue is crippling.  The constant rain is making my nervous system very over sensitive and I just want to curl up in bed for a couple of days.

I went to a gig at the weekend and I was having a great time watching a band I bought my husband tickets for last Christmas but I was overconfident and drank more than my upper limit of 3 beers and the 7 hour round trip has given me crippling fatigue, muscle and body aches and an awful headache.  I cannot make conversation and nothing is easing the pain.  It always takes 2 days to kick in.

I have to go to London for 2 days for work tomorrow and quite frankly I’m dreading it as I’m already feeling like I have the flu, I don’t it’s a flare up.

I need to focus my mind, think positive, it will pass.  I know I can do the festival I just need to do it on my terms.  Thankfully we have a couple of friends coming with us to keep my husband entertained so I can have plenty of rest.

No one knows how fatigue feels with fibro it’s like just starting off with flu and having the worst hangover ever and you also fell downstairs the day before so you feel bruised all over and it hurts to touch skin, I reckon that sums it up.  

It takes an hour to get in the bath that someone else to run for you then you have to rest after you’ve had a bath as your energy has gone 😂

So I’m going to get straight into bed and do some mindfulness and get focused.  Mind over matter.  I can get through London think of it as a mini break and the festival a holiday!! 

I can then moan some more next week and feel sorry for myself even more!

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! 

10 Stress-Related Health Problems That You Can Fix

http://www.m.webmd.com/a-to-z-guides/features/10-fixable-stress-related-health-problems

Here is another fun quiz that not only educates but throws in a few surprises. I once read that 9/10 illnesses that a person sees a doctor for all relate back to stress! Now that’s scary. I do believe that stress brought on my fibromyalgia, my endometriosis and my inflamed bowel. It’s time to stop stressing and start living http://www.m.webmd.com/a-to-z-guides/features/10-fixable-stress-related-health-problems