And Fibro Comes To Stay.......

Apologies that I have not posted for a few months. It has been a trying time for us in the Manning household as we learn to live with the things that have joined us in our journey of life.

So! The new knee is doing good! There is no grinding underneath my right knee cap which is AMAZING! I can't remember a time when my blasted knee cap didn't get stuck, or sounded like I was walking on gravel with hob nailed boots on. Unfortunately there is still pain in the medial compartments of the joint but I was prepared for that as they haven't replaced those bits. My surgeon and physioterrorists are happy with my progress and I am on the waiting list to have my left knee partially replaced which should be sometime in March. I am never going to be free of arthritis and success for me would be getting around with a walking stick instead of crutches and a wheelchair.

My GP FINALLY agreed to send me to see a rheumatologist, he suspected Lupus and sent me to the Lupus Clinic at St Thomas' hospital in London. The consultant there doesn't suspect lupus, thank goodness, but Fibromyalgia instead. He sent me to have a full blood screen to rule out anything else. The Vampires took 10 viles of blood and practically drained my arm dry. I get the results on 8th April 2014...yes it's a long wait but hey ho!

The day after I saw the rheumatologist I was in agony, no energy, extreme fatigue and severe tingling, pins and needles which caused enhanced pain. I didn't know what to do with myself. I had taken my full dosage of tramadol and paracetamol and NOTHING was helping. I was at my wits end when I phoned NHS 111 at 7pm. The young lady went through my symptoms and advised that she would be sending an ambulance.........the ambulance arrived at 10:55pm......

Once at the hospital I was given morphine to help the pain, which it did but I still had the tingling. I saw a registrar who was surprised I hadn't been tested for MS.....I am now starting to panic. I'm on my own in Queens Hospital which isn't known for it's competencies. He advises that they are keeping me in so at least they can start the ball rolling with trying to help me. I'm wheeled off in my bed to have a CT scan at 2am......I chuckle to myself and ask if they found a brain. The young radiographer smiled back and said "of course". I'm settled into the medical assessment unit. Settled is not really the word for it. There is a young woman on the ward who is clearly distressed and having the screaming heebie geebies and spent the next 5 hours screaming until they moved her to a side room. There is no mobile signal on the ward so my contact with my Rock, Paul, has ceased. Now it's a very lonely time. No windows to look our of and only artificial light. Luckily the lady opposite me has a wicked sense of humour and we hit it off immediately.

I am assessed by another 2 doctors/consultants. There is weakness on my right side including my right lung. A chest x-ray is done at stupid o'clock which shows by chest is clear. The tingling is still intense but the pain is under control. Both doctors perform the trigger point test which sends me through the roof. I react to all 18 trigger points and the doctors give me the diagnosis of Fibromyalgia. SHIT!, this thing doesn't get any better. I am prescribed gabapentin to help with my tremor which has been most noticeable today. They write a note to ask my GP to refer me to physiotherapy and Hydrotherapy to help with mobility and flexibility.....Guess what my GP said?....NO!....he said that if the hospital say I need it then they can refer me. I've kept the note for future reference as basically it all comes down to budgets and my GP hates making referrals....it's not just me, other people who have the same GP say the same about him. The hospital also informed me that they have referred me to their rheumatology department so they can assess if I need to be referred to a neurologist to be checked for MS. I am also waiting for EMG's Nerve Conduction Studies to check the extent of the nerve damage which is causing the extreme tingling. General consensus is I need to have tests to rule out MS which they can't do through A&E.

SO! I don't seem to be having any side effects with the gabapentin. It helps with some o the pain along with the tramadol but it doesn't help with the tingling which is hindering my mobility along with the pain. I feel as though I am walking on dead legs. I stumble more and I struggle getting around. Along with all the other fibro symptoms.....pain, swelling, fatigue, tremor, dry eyes, dry mouth, forgetting my words and struggling with speech amongst others.

All in all it's been a lot to get my head around as we play this waiting game for appointments again.

Woohoo!!! The Festive Season is upon us!!!! I love this time of year. Seeing the magic in my children's eyes makes all the pain worthwhile.

I made our festive cake.....in stages. 

It is rather yummy! fruit cake covered in marzipan, chocolate fondant and white fondant with holly decorations.

 The key to surviving the festive season is by pacing yourself and getting as much help as possible. My wonderful friend Stacy sent me a spoon so that I will always have a spare if I need it!

I was so touched! It certainly made me smile. To have a friend who understands exactly what you are feeling and going through are worth their weight in gold........or Spoons!!!

 

Jobs are divied out between the kids so that we can get the house sorted for when Paul's mum, sister and aunt come for a family gathering.

They did a fantastic job setting our festive feasting table!

Even Arthur Bear got in on the act! In the new year I am going to have to get him a mate, Duchess Fibro ;-)

 

Well! I survived Christmas Day with the help and love of my wonderful family. Boxing Day is going to be spent relaxing...I've written this blog post and that is the most I am going to be able to do. The pain is increasing but the tablets will beat that into submission. Unfortunately I have to live with the extreme tingling and pins and needles as the doctors said they probably won't be able to get rid of it. 

 

Paul is still amazing. Sitting on the sofa last night the tremor in my hands was particularly bad so I put them between my legs so Paul wouldn't notice, but he did....in fact he notices everything. He gently takes my right hand in his and holds it. He doesn't care about the tremor, he just loves me for me. I know he finds it difficult and he doesn't like to see me in pain or struggling but I know he would do absolutely anything for me.  We took this selfie last night .......it's us telling Arthritis and Fibromyalgia that they are NOT going to win!

 

Hope you all had a wonderful and pain free Festive Season.

xxxxxx