What face today?

This week has been very testing!

 
  The second week of the school holidays and i had to stay in bed on Wednesday as i was in so much pain. I struggled to get into the hospital for my blood test, and after that i stayed in the car when my kids and partner went into Tesco, that's when they know its bad. That afternoon i stayed in bed watching American Horror Story with a brew and medication.

I was taking my Co Codamol 2x 30/500 and it really wasn't touching the pain, it was  if it was a placebo!

So yes, since then my pain has been ridiculous, im usually quite good at linking my pain to something i.e, doing too much, walking, running, stress etc. But nothing seems different. The only thing i can link to it is the sudden weather changes again to colder windy weather.

My problem, i hide the pain, i have to! I have family worried, children to look after, i cant show them that im hurting..IM FINE, or thats what i want them to think.

I am very behind on blogging due to all this, i spoke to my nurse at the hospital and she told me to ask my GP for something for the bad days, like Oramorph, i really doubt he will give me anything like that as hes told me to just take Paracetamol whilst on the Gabapentin!

No chance!

A successful doctors appointment

Today is my first GP visit after seeing the doctor at the pain clinic a few months back, who after looking through my notes agreed i did in fact have Fibromyalgia and he started me on Gabapentin.

I have had so much trouble over the years with doctors regarding my pain.

 My Endocrinologist and Neurologist were great! They set up blood work, MRI scans, a muscle biopsy and X-rays, which showed absolutely nothing to why i'm feeling this way and in so much pain. I did have Graves disease and had my Thyroid removed as they thought it was causing the pain, which it wasn't and i now suffer from the Hypoparathyroidsim which i will write about one day.

I eventually saw a Rheumatologist who is usually the main man to officially diagnose Fibro, he gave me a medical and stated i had a lot of tender points and restriction in movement.

He told me, "It's Chronic Pain Syndrome and it will go".

So now three years later, it still hasn't gone! My GP has told me i am now being reffered to a specialst for my Fibromyalgia and Chronic Fatigue.

I am so happy it has finally got to my GP after my Endocrinologist told me this years ago after all my tests came back clear, i even have paperwork of the diagnosis which i did take to my Pain clinic.

When i first got the inkling of it being Fibro, i read a lot of people finally got diagnosed after 5, 6,7 years and it baffled me! I now understand why it does take so long, so many specialists throwing different answers in the mix.

If you are in the middle of a diagnosis....... keep fighting!

Blood work day!

Here it is again, hospital blood test day which i have attended weekly for the past 3 years. These tests are to monitor my calcium levels as i suffer from Hypoparathyroidism after an operation to remove my Thyroid due to Graves disease, which they also though was causing my pain which was later diagnosed as Fibromyalgia, Chronic pain Syndrome and Chronic Fatigue syndrome.

On my way to hospital i received a message from my cousin to tell me my Granddad has had a fall and hurt his back, he was currently in an ambulance to the hospital i was attending.
I had my bloods done quickly and rushed around to see my Granddad, his brother was there to who followed him down behind the ambulance (my great uncle but i call him uncle).
My Granddad is a big man with a bigger heart and i know if he could help it he would have tried to hide the pain he was in from me so i didn't worry, which seemed near enough impossible.
The porters came and wheeled his down to the X-ray department to check there were no breaks etc, my uncle went outside for some fresh air whilst he was in so i sat outside the room and waited.
I will never forget the painful screams that were coming from the room whilst they tried to position my Granddad for an X-ray. My 74 year old Granddad seemed in so much pain to wail out through the hospital corridors with nothing i could do to help him.
This is something i will never tell them, unless they read this of course but i doubt it, whoever i spoke to on the phone i reassured them he was fine and hes had an X-ray and painkillers which were kicking in, which they were i didnt lie...i just hid parts of it...white lies?

I am quite glad it was me there as i think now i have hardened a bit, seeing somebody in pain, due to the pain iv endured over the years, i know if it was my mum, Nan, aunties they may have broke down.
I waited there until he was wheeled out and i smiled at him, It will be OK!

He was discharged later that day as the X-ray was clear, he seemed to have strained a muscle which is good news.

Sadly the anxiety i endured between setting of from home to the hospital ( even though i didn't show it), it caused my calcium levels to drop, my levels were 1.83...normal should be around 2.4, so now i'm being closely monitored again!

Learning to pace myself

Last week i got given a diary sheet to fill out from my CBT appointment. HOLY MOLEY! Did i realise how much wandering about i do? I'm not sure if its just me being stubborn or my brain fog choosing what it wants to remember or forget of my daily life, to have this frosted glass effect on where i'm going wrong.

For example: Day 1 - Monday.

Got up. Had my Gabapentin, 60mg Codeine, 1000mg Paracetamol, 800mg Ibuprofen. Got the kids ready for school. Lunches packed. School run done.....Walked to my grandparents (which i didn't realise until my therepist told me -one way is 3 miles!)

So i sat down at my grandparents for a few hours. Had more meds. WALKED BACK HOME! Did the shopping. Picked the kids up. Got home at 4pm.

                     Day 2 - Tuesday :
                     USELESS. I had to cancel my sons rugby practice as i couldn't get him there

                     Day 3 - Wednesday
                     USELESS. I had to cancel my hospital blood test and rearrange it.




It does suck not being able to do these things for myself, i love walking places, i love exploring and following my interests everywhere, but i need to lose this stubbornness! Due to this walk i lost 2 whole days!

Pace myself!

Drugs are bad, they numb you so you don't feel things and don't feel the damage you are doing, but they help you as well, to get you through the day..

I cannot go for long walks to the shops or on holidays or to castles, some people can, everyone's limits are different. I am lucky in a sense that im not bed/house bound, but i am only 28 and i'm still fairly young and i hope it doesn't get worse as this is not fun for anybody with me......this is why i push people away.

Healing Crystals for Fibromyalgia

Crystals are a big part of my life, i only started my collection early this year after reading books and posts, the way they can help the body whether its to aid healing, infertility, love, sleep...you name it, there are crystals for it.

Crystal Healing can be described as the application of crystals to aid the body’s energy system find a healthy and comfortable point of balance to improve the quality of life. As we’ve already seen pain has a serious detrimental effect on the quality of life and crystals can be highly effective in removing pain.

Crystals can help pain in several ways. They can work directly on the pain as above, certain crystals will generally aid particular areas of the body, such as citrine for the digestive tract or emerald for the lungs, and working with or just wearing these crystals may help to relieve pain in specific areas or organs in the body and some crystals will act as “pain killers” and dull the sensation such as chevron amethyst.

Amethyst is my favorite, i have a large raw Amethyst rock, small crystals in a jar and numerous polished for around my neck. It is prized for its ability to work on all types of pain, whether emotional, physical, spiritual, or other.  Amethyst works on the subtle level by balancing the subtle energy bodies and cleansing the aura.  Meditation with Amethyst can bring new insights into issues that may or may not have been addressed by you in the past.  Amethyst is said to relieve pain, depression, anxiety, and insomnia

Citrine can provide an energizing vibe of vitality and hope when it is most needed, helping to lesson depression and negativity. Citrine makes a great compliment to Amethyst, so much so that they are often found together in the form of Ametrine, which beautifully combines the two energies of these crystals.

 Rose Quartz can be quite helpful to those who find themselves depressed or sad.  As soon as onenQuartz is known as the Master Healing Crystal because it contains the full spectrum of light and as such will work on every level to bring the body into balance. It strengthens and stabilizes the body's energy fields and promotes harmony. Quartz can amplify both positive thoughts and energy and can stimulate positive action when it is needed. It can be held or worn to promote clarity of thought and to help you to see your way more clearly.For Fibromyalgia symptoms i wear/ hold Rose Quartz and Clear Quartz.

Worth a read!

This is one of the first books i read on Fibromyalgia, my mum got it for me not long after us realising this is what i may have (before all tests were done).

The book tells you about signs and symptoms and what people have said who also have the condition. I took a picture of a section which related to me so much, it was as if i had wrote it. The worst thing about having a Chronic illness is people not understanding, due to this, friends/family either walk away or they get pushed away. After reading this book it hit me so hard that i was not the only one, its so hard being consumed in your own little bubble of pain, you don't always think there are more people going through the exact same thing. This is one instance where i think the Internet is amazing! It connects people from all walks of life, different countries and cultures, all joining together helping each other through the tough times, managing or coming to terms of the thought of having a Chronic illness, that is what we need, acceptance and understanding.

Have you got any books you could recommend?:) x

Can Fibromyalgia be hereditary?

Can Fibromyalgia be hereditary? This question is argued so much on the internet or with doctors, from my experience and from reading through pages and peoples view. I am on a few Facebook pages made specially for sufferers to join and talk and feel like they're not alone, its easy to feel alone in this if you don't have a good support network. A lot of the members on this page state that their mum, dad, Nan ,sister,brother, children all have Fibromyalgia, yet there is still some medical professionals adamant it is NOT hereditary.

This is my personal story with this argument which gives me an idea that chronic pain had made its way through my family from the 1800's easily.

I am an avid genealogist, family history is my passion and i can sit for hours scrolling through names, records, census's, websites and the family history museum where i have validated a lot of incidents that not many people think about or have access to.

I think a lot...I'm spiritual   and i have maybe strange/quirky thoughts and i think way out of the box, more than some people. If i ever go missing i would be found in a nearby cemetery with my little notebook or in the local family history museum underneath a stack of records, trying to piece together and make sense of where i came from, you got me...i'm a nerd!

Genealogy gets exciting, frustrating, upsetting and makes me curiouser and curiouser as a girl once put it :).

What i'm getting at, you learn a lot about your past, much more than just a date of birth.

Sadly i did come across a few suicides and relatives who have become depressed, so bad that they have been carted off to a Mental Asylum because the doctors just didn't know what to do, which could be said for a lot of things in the 1800's to mid 1900's.

I'll start with James ( my 2nd great grand uncle) born in 1875, at the age of 25 he was involved in an accident in a Mining accident and injured his hip and head, this caused him to be out of work for a while whilst he recovered and he moved in with his brother, he eventually returned to work on lighter duties. At the age of 45 he was admitted to a Mental Asylum due to depression after being out of work now again for having chronic pain. He was released after a year and at the age of 47 he committed suicide by drowning himself in a pond on a cold December day, i witness recalled " I saw a full dressed man throw his stick aside and jump into the water" she raised the alarm and men tried to get him out unsuccessfully.

Verdict of death, suicide of unsound mind.

Next is Thomas, ( my great great grandad). After an injury to his knee during the war at 19  when he was shot, he recovered and continued his service, he got married and had 10 children and 1 adopted. He joined the army again at 40 and was fit for duties. After 5 years he was discharged as he was unfit for duties due to chronic pain, the military records state that they had to call for his wife to travel down and collect him. Then, only 5 years later, he has committed suicide by strangulation, whilst "temporary of unsound mind"

This is what im getting at (finally) I don't have any medical qualifications, i wonder if this is where my chronic pain came from. My Fibromyalgia only showed its ugly face after my second pregnancy in which i had severe Symphesis Pubis Dysfunction, no sooner had my pelvic pain settled, i developed chronic pain through my body, starting with my legs, then eventually i had chronic pain everywhere.

On www.nhs.co.uk it states these potential triggers which may be the cause of Fibromyalgia developing

• An injury or infection
• Giving birth
• Having an operation
• The breakdown of a relationship
• The death of a loved one

Both of these distant relatives had a previous injury then a few years later it was noted that they had crippling chronic pain, Sadly pain management was not as advanced back then as it is today, Imagine this pain searing through your body and not being able to grab some relief, even if its just a bit, they lost their role in the family as the main provider which in its self can cause depression and worthlessness, sadly they succumbed to the pain and felt the only way to rid it and to feel relief was to die, i know its depressing but its happened and i'm so glad i live in this era now where help is at hand!

Again i realise in the 1920's and before, pain relief wasn't as developed as it is today, but i do believe there is a hereditary link and maybe Thomas and James developed Fibromyalgia but it wasn't known, there have been a lot of arguments to if its linked in the family, if i'm honest i think its too soon for them to admit it until generations of medical records as they are now show it.

If you enjoyed this read or would like to add your thoughts on the subject then please comment, or if you have any stories of your own :) x

My Fibromyalgia symptoms

So, i recently saw a Doctor in the Pain clinic, he was so lovely even though i was useless due to brain fog and my emotions being all over the place...i'm very sure after i left he got some whisky out of the drawer with a shot glass but proceeded to drink straight from the bottle, but i cant speculate.

Before i went to the appointment i bought a notebook to write everything in, which is why writing this list will be a lot easier than doing it from the top of my head! In the book its 4 pages long so hopefully it wont seem so long on here...if it is i apologize and i give permission for you to grab the whisky out ;) .

• All over pain/ muscle pain.

         Deep aching, dull, throbbing in my legs, arms, shoulders, back, neck and feet.

         Pain after being active and the day after, when the weather changes, temperature drops or bad              weather after it being OK, the pain can also flare with no warning that i know of, my newest                trigger is humidity after 5 years of pain.

     
  Pain all day but manageable, the above triggers worsen it which is my flare, these can last between a day to a few weeks, i take Co-codamol x2 30/500 maximum 4x a day, Sometimes i alternate it with Tramadol 50mg for a next dose when my pain is bad  as im taking Co-codamol more frequent, it stops working as good! When this happens the Co-codamol does not last, the maximum it lasts is 2 hours after taking it, but it takes 1 hour to start working so i only get 1 hour relief,

• Temperature changes.

      I wear thermals in colder weather, i use Tubi grip bandages on my wrists and ankles and on my lower legs for calf muscle pain, The pain i get get in my ankles, wrists and knees are a sprained feeling, like it cant hold any of my weight, this causes me to struggle walking when iv'e either got out of bed of from being sat down.

• Stiffness.

      In the morning, getting out of bed causes me to stumble a bit due to stiffness in my legs and the sprained feeling in my ankles, that my feet cant hold my body weight. This also occurs after sitting.

• Tiredness and fatigue.

      This occurs through the day, whole body tiredness where i just feel exhausted, not being able to make decisions and being quite hazy. I don't wake up refreshed.

• sleep problems.

      Mostly due to the pain, i take Amitriptilyn 25mg at night which has recently been helping me fall to sleep but sleep is still broken, i had it upped to 35mg to help with anxiety but as we have found out anything over 25mg causes me to wake up with a headache. The problem with this happening is that i cannot take Tramadol or Codeine with a headache or it turns it into a full blown migraine, so i have to take Ibuprofen or/and Paracetamol  until my headache has subsided which i cannot keep dealing with as i have young children and need to be able to be mobile for them. Also Tramadol affects my sleep if taken after 5pm.

• Anxiety and Depession.

      I am currently having CBT, i have only started suffering since my Thyroidectomy in 2011 where the operation didn't go to plan and i woke up with very low calcium levels and it is now a lifelong illness....along with Fibromyalgia and this extra condition it has become a bit to much on my shoulders where i now have low moods a lot and anxiety.

• Skin pain.

      Sometimes flares up without a trigger, feels sensitive to touch like its burned or raw, this unables me to wear certain clothing when it happens as it feels like its scratching and taking a layer of skin off!

• Things i have tried or what i do.

      I wear thermal leggings and tops with temperature changes, i use rice packs heated up for my neck, shoulders, behind my knees, inner elbows and legs. I have also bought heat pads for these areas too and wear them under my thermal leggings or normal leggings when i'm on the go. I use muscle rubs and wear Ugg boots the majority of the time, possibly 10 months of the year!

      In the past i have tried dietary changes, dairy free ( difficult with Hypocalcemia), gluten free, cutting down on sugars, diets which contain only fresh Organic food.

• Medication
• Thyroxine
• Amitriptilyn
• Calcium Carbonate
• Vitamin D, Rocaltrol
• Tramadol
• Codeine
• Paracetamol
• Diclophenac

What strategies do you have which gets you through them painful days? What would you recommend doing which may help myself or other readers? Please let us know in the comment box below :) xx