First of all I want to say thank you to any comments, messages and emails I have received since I started this blog. I didn’t think anyone would even read it. It means a lot to me the amount of support there is and that people understand M.E/CFS and Fibromyalgia even that little bit more.
So first I’ll talk about the Lidocaine Infusion I had two weeks ago.
Basically I sit in a chair and they hook me up to all the machines that check your heart beat etc. Then they take your blood pressure and weigh you to check everything is okay for you to go ahead with it. Then they put the cannula into your hand and add the drip which slowly for an hour and a half puts the anaesthetic into you. Then they take your blood pressure every 10 minutes whilst you just sit there (bored).
After the infusion I didn’t feel any different apart from feeling dizzy. The next day I did think the pain in my arms was better which was good but my legs just seemed to get worse and worse.
By the Sunday after I was in so much pain that I couldn’t even walk to the toilet. My legs felt like every step I took they were going to snap. I was in tears, panicking, I had never had pain like it, even when I went to A&E the pain wasn’t this bad. I collapsed on the floor in pain, my ankles felt like they would snap and ended up having to be pulled up by my mum, dad and brother. In the end I took painkillers and something to calm me down and the pain didn’t go but I did manage to calm down.
The next day I managed to even get the train to Leeds for my cousin’s birthday, the pain was unbearable but I didn’t want to show it, I managed to grit my teeth and get on with it for the sake of my family.
This probably didn’t help as the next day the pain was as bad as Sunday, if not worse. I ended up having my mum and boyfriend carry me to the doctors as I couldn’t walk and we didn’t want to wait for a doctor to come the house. I was prescribed ibuprofen and codeine which also failed to work and sent for a blood test. I felt fobbed off again even though he could clearly see what pain I was in. An on call doctor had to be called out on late at night as the pain got worse, I couldn’t walk again and he had to prescribe even stronger pain killers called dihydrocodeine which again, didn’t do a thing.
Wednesday I went for my blood test and then I hobbled to a friend’s 21st as I didn’t want to miss it because I hadn’t seen her since Christmas and we’d grown up together. I managed to sit down the whole time so it wasn’t so bad and it felt good to get out for once but still the pain didn’t go.
On Thursday I went to town in the wheelchair where I have now realised the different ways in which people look at you. Girls are nicer, they feel sorry for you, not glare at you in disgust, guys don’t look you up and down they ignore you, in fact most people ignore you unless your wanting to get through a door or into a lift where they suddenly become polite and have manners. I managed to go watch my dad’s football team whilst limping around and sit and watch my brother play guitar and sing at Herbert’s bar. When I finally got home at 2 am I was in so much pain my brother had to put me to bed as I was in tears and pain again, I didn’t sleep at all.
On Friday my legs were still bad in the morning, I was supposed to be having my hair dyed ready for Sunday and was really looking forward to being a model on for a neighbour who works as a hairdresser and I would be able to get out of the house again. In the end we had to call a doctor out to come see me as again, I couldn’t walk AGAIN. The pain was excruciating like someone stabbing my legs all over. I used a tens machine again and wore flight socks which helped a little but it was still so bad. The doctor told me that the results of my blood test showed that my Vitamin D was low and prescribed me Vitamin D tablets 5 times a day, some Pregagablin to help the pain which should also help the nerve pain and Diazepam to calm me down which did help. I ended up in bed all day which made me feel like I was off ill from school when I was younger watching daytime TV. I ended up having to kick my boyfriend out of bed into the spare room I was in that much pain at night, the tops of my feet hurt so much just to touch even gently.
Since then my legs have still been bad and I think I over did it on the weekend as my cousin’s came over to stay and I didn’t want to miss out on anything, although I did sit down most of the time and even managed to get out of playing Twister. Even my little cousin’s (aged 5 and 7) looked after me even when I fell over because I was so dizzy and my legs gave way again.
The only way I can describe the pain in my legs, knees, ankles and feet is like someone stabbing them, then breaking them, then pressing on painful bruises, then people sitting on them. This goes round and round, stabbing, breaking, bruising, sat on, stabbing, breaking… you get the point. They are so tender to touch that I couldn’t even put a duvet over my feet and wearing shoes hurt so much.
My family have been the best this week and I appreciate them so much. This illness is so unpredictable but they’re always there for me and ready for whatever happens.
I told a few people who have got in contact with me that I would blog about what treatments I have tried for now I’ll list them and you can either do your own research or feel free to ask me about them.
I’ve been to:
- The Perrin Technique
- Lidocaine Infusion
- Pain Clinic
- Seacroft Outpatients
- X Rays
- Blood Tests
- NHS Health Carer
- Tens Machine
- Co Codamol
I’ve mentioned most places I’ve been and treatments or tablets I’ve tried or are currently taking. There is more but I just can’t remember at the moment.
Hopefully this is an in site into how bad a week can be with this illness and hopefully other people with M.E/CFs or Fibro can try some of the treatments I’ve listed and they work!
My email address again is firstname.lastname@example.org or message me on faceboook or twitter.
Thanks again for any messages already sent to me and I’m sorry if I take ages to reply.
Love, Natasha xo