Ok, Brace yourselves

Well, we got to the station at required time to get me to my appointment at St Thomas'

It was a very bad pain day so was going to be a tough journey whatever.

Trains cancelled so we waited 50 mins on a hard metal station seat. Finally got a train which was going to London but not the station we needed. Got to London Bridge and decided to get a taxi as we were going to be late.

Got rattled around in the taxi and by the time we arrived in the Department at St Thomas' I was in agony and could hardly move.

Met a really lovely Consultant who was very compassionate and understanding. I wasn't expecting to have a physical exam but she examined everything. My arm that doesn't raise, neck, ribs back and pelvis. She even tried to get leg raise, by which time I was sobbing with pain.

Returned to the seat by her desk, trying to compose myself when she looked me full in the face, said 'you've been through so much for so long and I'm really sorry but I'm not the right doctor - you should have been given an appointment for someone who does Neuromodulation AND THATS NOT ME 😁😁😁😁😁😁😁😁😁

So, she is going to sort an appointment for me with the right person as soon as possible and then I'll have to go through the whole process all over again.

The journey home was gruelling, Alex had to ask for a seat for me and I was still weeping with pain - most embarrassing.

Home now and had to resort to the really big gun meds and hoping things will start to settle. At the moment I am on fire all the way down my right side from under my ear to the sole of my foot.

How can this happen, it's beyond belief.

Sorry for the tale of woe friends when you gave me such support and encouragement

Many thanks




12 Replies

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  • Oh Shirley what a journey. Been braced here everything crossed.

    It will be worth it after such a nice consultant. See \i shall have to come next time and we can shake, rattle and roll together.

    chin chin up old girl.


  • Oi! Less of the old 😏

    Yes, I'll rise above. She was very complimentary about my attitude and encouraged me to keep on doing the bit of work I can manage.

    Yes, definitely come down for next time and we can get titties out together!!

    I copied and pasted your message today and had it on my phone to read and encourage.

    Thank you special friend



  • I think our key healthcare professional should be a Neurologist and not a Rhumetoligist. The problem is there are no NICE guidelines for Fibromygelia. Other illnesses and diseases have a step by step protocol to follow with flow charts, meds, plan B etc all nicely documented. We don't have that so it falls to each GP or Consultant to do what they think best. However, some do not even believe the condition of fibro even exists!

    I believe plans are afoot, but have been for some time, to remedy this. There will be many here more informed than me on this area. I am lucky to have a wonderful GP but an awful Rhume who diagnosed me after ten mins gave me a leaflet and said goodbye!

    Sorry your trip was so awful but it sounds like you are moving forward in the right direction 😊

  • Thank you for your good wishes Hartleyhare2,

    I agree with you re a pathway for Fibro treatment even tho that's not my diagnosis.

    Very best wishes


  • Oh hun, I am so sorry to hear that - at least when they did it to me I didnt have to go all the way to London, its so frustrating that they get the wrong consultant time after time!

    I took the bus to meet my nan in town on Monday and I have barely been able to move my arms or back since. I think the vibration did something to my new implant.

    The London underground isn't much better for those who can find getting abut a bit of a challenge, I love going up to Camden and Borough markets but it does take it out of you.

    Hope you are feeling a bit better today, try and enjoy the sunshine.

    Love and Hugs,


  • Hi Amy,

    Thanks for your kind message. Yes I'm just resting up today and although I'm absolutely exhausted the acute pain is easing ( with the help of the really strong drugs which I avoid as far as possible)

    I'll be contacting the consultants secretary later to see what she has done about further appointment - sometimes it's necessary to be a 'nuisance' to hospitals!

    I might have lost some info, your new implant??

    Are you not far from London then if Camden and Borough tempt you?

    I'm in Sidcup

    Take care,



  • Oh my god! That's outrageous. Poor you! As if it's not enough all the heart searching and anticipation but the nightmare of that travel too. I'm so sorry you had to go through all that! It makes my blood boil! Have you got a couple of Valium you can take? And have a dark room day - that's my term for checking out and staying in bed for 24 hours! You can restore yourself... So sorry for you. Xx

  • Hi Boozybird,

    And breathe! Don't want you with boiling blood!

    I've resorted to the really strong drugs and have been resting since we got back yesterday. I wasn't able to manage the stairs so slept in reclining chair but I did sleep reasonably well thank goodness. I was exhausted and awash with meds

    Today is another day and I'll rise above what happened but I'll certainly follow up with the consultant I saw and check that what she said about getting me the soonest possible appointment with the correct consultant does actually happen. I suspect it will, she was a sincere and compassionate person and very embarrassed by what had happened.

    I recently invested in a very comfortable cushioned lounger for the garden so that on very bad days I'm not confined to bed or reclining chair. It's a beautiful afternoon here and I'm laying under the shade of the apple tree with my faithful Woof pottering around by me.

    Onwards and Upsards eh? 😏

    How are you doing?




  • You brave ole thing! Well done for taking it in your stride and at least you've got some sunshine, a lovely apple tree and love interest (woof!) for your recovery. Hope you feel more perky soon x

    I'm lying on the floor with my legs up the wall - need someone to pop by and give them a jolly good rub! Fat chance - lol I'll head off to the fridge shortly and have a glass of wine. Big hugs. Xx

  • What the heck us going in here??!! That's twice in two days I've been called old on here!!! It's an ugly rumour, whoever told you all I'm 60? πŸ˜‰

    Love interest indeed, never heard that said about Woof!!

    If I were near enough I'd give your legs a good rub, I'm too far aren't I? Don't want peeps talking about us!

    Cheers, let's have a glass of wine together.


  • Lol! Whoa! I said, 'ole' not old! 😜 meaning friendly....

    Oops! I had three glasses of wine....πŸ˜ƒ x

  • I'm glad you met a good person at the end of it! Mistakes happen. It's ok. It would be wise to take extra pain meds on these trips and also make the people you are seeing aware of your condition. Maybe email or fax them on the day so you don't waste your time. Don't get appointments early in the morning, so that you have time to contact the place before they make these mistakes again. You can't leave

    anything to chance when you suffer like you do. Anything can happen because the world is not predictable. Accept that, and everything will be much easier to cope with.

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