I was sent home from work on Thursday, I was in that much pain, I even had a sort of panic attack. My boss took me home, my son was at home, my boss said she wouldn't have left me on my own which was nice. There was no point in going to a and e as they have fobbed me off each time I go . My consultant's secretary is speaking to him next week about bringing my appointment forward. Fingers crossed!! I really can't go on like this . Please take care. Lots if love Lynne xxxx
Oh sorry to hear that Lynne I had a few panic attacks pre transplant I just think it's trying to keep our strength up every single day when we feel so shit. And more so when were in pain I hope they bring your appointment forward xx
I hope and pray things get sorted soon for you. You are doing really well. Despite everything you are trying so hard to live life as normally, if there is such a thing as possible.
Before you ask things are ok for me. Work is getting harder but working in an advocacy and support service that isn't a surprise with so many cut backs.
Just to give you a smile, the other day I was supporting someone who was talking about difficulties when a family member goes in hospital. He goes in a lot. She had been given a couple of forms by a learning disabilities nurse that are supposed to alert wards immediately to someone's needs. they are hospital basic needs grab sheets. She wasn't sure how useful they would be. English isn't her first language. Experience also didn't help. I described them as bossy G (me) forms. She smiled and understood that if the wards don't act on them they could expect problems.
I have no idea why I have that reputation (ok I do).
Take care and look after you. There me being bossy again. But remember I enjoy our chats.
Hi Gill - Lynne MA is trying to contact you on the liver forum and has been asking for help locating you as she has accidentally deleted her account and now uses the user name Oldham12 - my name is Pam, user name IPCN hopefully I have not offended you by trying to contact you on her behalf. Kind regards
Hi lynne , aww bless. I really hope they can bring your appt forward. Pain constantly really affects us physically and mentally .
Im still in pain myself with osteopenia and degenerating bone sclerosis. Had my assesment done and im sure he thought i was putting on the pain ..asking if i worked 🤔.. .my drs referral letter stated i had bone degeneration stupid man , so i now have tk wait for double MRI of the spine and hip .still waiting on occ therapist to assess.my needs at home.bloody joke it is .then i get told off at the QE hospital liver unit as my recent scan showed fatty liver now .all due to not being able to cook from fresh and eating way too much rubbish and chocolate. Never ending circle .. hope you feel bettter soon xxxx
Thank you so much. You really are having a rough time. You are right, these drs don't listen, it's so frustrating!!!! I'm keeping my fingers crossed that my consultant brings my appointment forward as I don't want to wait until 1st February!!!! Xxxx
Are you seeing a specialist for your fibromyalgia Lynne ? Might it be pain from that rather than your liver that is your issue as I know they keep dismissing the liver angle.
No, the specialist discharged me!!! My liver nurse said Huda scan showed dysfunction which I looked up is sphincter of Oddi which I mentioned over 2 years ago!! Also said very fatty liver with some fibrosis. This as well as fibromyalgia is becoming too much.
How's your husband doing? Thanks for your continued support. Lots if love Lynne xxxx
Hubby just caught the cold off me despite my best efforts. I've been rough for a fortnight with it and now he's just starting with it. Other than that liver seems to be behaving for now and no change in his liver issues. Still being kept a good eye on.
I don't know anything about the Sphincter of Oddi stuff but it seems very wrong you are being left in so much pain without proper answers.
I think one of the problems is that we need specialists to get the extra information about specific areas of our bodies but unfortunately they often forget the basics and how different problems with the body can upset other parts. Fibromyalgia as you well know can affect so much of the body. It is just possible that each are setting the other off. That then seems to be a nightmare getting them to recognise the different links.
Keep your chin up , or in my case chins. Are you finding the weather is getting to you? I am. Since my injury my body is like two bits joined together. The top wants long sleeve t shirts, the bottom thermals and thick trousers and warm long socks. It is absolutely crazy. If it had to feel like two bodies shoved together, couldn't it have been my top with a different bottom preferably really long feminine legs? Not short chubby ones. Nah thinking about it I would have re-modelled my top as well.
I managed to get down to do a bit of weeding today. I needed help with getting back up though. Now my legs are letting me know they are cross with me.
Why can't I eat chocolate, enjoy the odd cake and not show it on the scales and in the mirror, like I could when I was in my 30's? I swear the scales groan before I get on them now.
You may get the feeling that cold weather and trying to lose weight with Christmas goodies on display is feeling a tad wearing for me.
You would be absolutely right.
Take care and let's hope you get the right help to ease your pain soon.
Hi. You can enjoy a bit of everything. Just a tiny bit can't harm. The most important to avoid is glucose syrup or high glucose corn starch, High Fructose Corn Syrup or glucose-fructose syrup containing products like marshmallows, haribos, cakes etc.
Check the ingredients. Eat chocolate but not filled with flavours and syrups. Avoid the rubbish lile Cadburys Roses, or terrys, twix, mars, celebrations etc. They add these flavours to increase the volume and weight of the chocolates and avoid replacing it with real chocolate.
Glucose fructose should be banned but there isn't enough sugar to replace it. It is harmful and can't be utilised by our bodies. It just accumulates and makes us fat around the tummy...where vital organs are like the liver.
You are very welcome. I hope this helps. I'm struggling with obstetric cholestasis. I have good and bad days. Ginger seems to be saving me so far as the quickest to act, on an itchy attack along with ground whole skin on almonds mixed with ground whole oats, skimmed goat's yoghurt, psyllium husks, pomegranate sugar free concentrate (which meant ti be for sauces and marinades), I mix it with water and make a drink. Plus I cut out even on decaf tea and have occasionally Redbush or Mint. Somehow decaf left me feeling not so great. Coffee and black tea make the liver produce more bile acids as well as work harder which is exactly what we don't want. Pregnancy hormones and the last trimester stage baby produced hormones make the liver slow down struggling to process things as it is.
Changing diet makes a massive difference although I still wake up after 3 or 4 hours of sleep with a desire to scratch.
It feels like hell sometimes.
Thanks for asking. I know there are worse that people go through but sometimes I feel there's nothing worse than constant extreme itchiness that is painful.
Thank you so much. My Dr prescribed fexofenadine for it being which had been great. I very often don't get any sleep cos of pain, if I do it's an hour at the most!! My boss said she doesn't know how I manage to work sometimes but she is great and gives me so much support. I'm lucky that I have a great support network. Please take care. Lots of love Lynne xxxx
I'm so sorry I do believe me no that the pain is unbearable I have it .the panic lack of sleep makes me have terrible panic fear even see what ain't there it's terrible as like u enough is enough I wanted you to no that I'm thinking of u
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I've been out celebrating 
How much longer?
After 15 + months on the transplant list, I've had my transplant!
Why do doctors dismiss liver pain and liver problems so much?
