We'll I'm on day 4 of a pretty horrifically painfull and intense flare and an insomnia (zero sleep everynight) attack and after a catch up on here my mind was refreshed that I told a few of you guys interested in my clinic referral I'd update you on the progress... you've gotta love a bit of fibro fog haha.
So appointment 1 I was a little dubious since the letter had psychologist mentioned and I wasn't going to be told for the millionth time it's all in my head but I got a very nice surprise when it was the total opposite.
The specialist in question was a lovely woman, she asked me some personal things to get to know me, how I cope, the meds , if I blame things for fibro..the usual and said that I am a very admiral young lady to have a job and try to sort of push through rather than being hateful and getting depressed too much. She also said I have quite a good grip and understanding of the condition (thank you guys for the further broadening of my knowledge and an extra special shout out to bluemermaid for her amazing expertese) and is pretty sure she knows the path she wants me to take already. Such a nice thing to hear and she seemed genuinely empathetic and supportive...not common in the medical world with CFS and fibro hehe. On the appointment she gave me a diary to fill out for 2 weeks with active/resting, pain score and mood to fill to check my daily routine. (Remembering to fill in things is crazy hard with fibro fog right?)
2nd appointment 28th July she asked me how I got on with the diary as she knows this illness can make you quite forgetfull..wow right? We dissected and discussed it and she said she thinks I am doing to much , (although I feel I can't do anywhere near as much as I want most of the time) I need to have more resting time, cut my working hours and try to take it easy more. Asked me how I had been (flares etc) and then we discussed booking my 3rd appointment (group info session thing) to go over a few details. Forgot the exact stuff and it's all a bit new still and said she thinks I'm perfect for a pain management physio sort of 8 week program so intrigued about that.
I feel hopefull about the hole thing and comfortable how they are approaching things so when it develops more I'll be sure to update.
Sending you all peace, love and a restful night
Xx
Written by
Kayleigh_91
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I am so genuinely sorry to read that you are suffering and struggling and I sincerely hope that your pain eases soon and that you can manage a good sleep my friend. Thank you so much for the update it is genuinely appreciated.
I personally think it sounds promising but time will tell if it turns out to be long term useful for you? I want to sincerely wish you all the best of luck, and please take care of yourself.
Thank you for the kind words Ken it really does mean a lot!
Fingers crossed it settles down or I at least get some well needed sleep! The insomnia normally lasts anywhere from 2-8 days before my body just stops and sheer exhaustion sends me to sleep so shouldn't be too long to wait ...yay
Yeh definitely, I'm always open to try new things and have a positive outlook on them so just be playing it by
Kayleigh, So very glad to hear your update as its all so good!! I can hear it in your words how excited you are that someone is taking the time to help you. ..I'm glad for you.Continue to listen to @Bluemermaid3 as she is very knowledgeable as well as helpful!! I wish you the best.Peck 🐤
Thank you peck! Means alot I really am it's a breath of fresh air knowing I'm not being ignored, fobbed off or interigted about it all ..feels nice to feel like I'm moving forward and could potentially get a little ease from this..even if it's just every now and then I'll take it lol !
Good stuff Kayleigh sounds just like my first encounter with pain clinic and follow on eight week course. TBH I would have kept that going as long as possible as such a great rapport was built up between staff and other course members supern having people who've got the tshirt too and understand!!!!! Lol
Thanks Patrick! Yeh i know what you mean , I too want this to last for as long as possible. I think it makes such a difference to be surrounded by the people that are wearing that t-shirt as it helps with the undeniable feeling of being alone we all have to face now and then and those days that aren't as bearable than others don't you think?
Because it is quite misunderstood and medical bodies are still confused with the variance of fibro and all things wonderful that it comes with :|... it's awesome to have that feeling of hope =]
If you don't mind my asking Patrick, did you get a lot of benefit from the clinic? Did you do the 2x group sessions before the 8week course? What did the course contain? I know the groups cover different management techniques including things like pacing from a number of prospetus just wonder what else there is too it....Eeeee look at me bombarding you with questions sorry...just more information than already told would be super helpful and appreciated 😊
Please don't feel you've butted in , everyone on here should know there welcome to join in with any conversations and ask anything that may help their experience.
I'm so sorry to hear youreally having a rough time with it..keeplaying yourself warm, rested and snuggly, maybe take some pain relief if it's a bad flare you're having..we all unfortunately get like how you're feeling and i know its easier said than done but you need to hold onto the fact we do get those slightly better and sometimes good day... try to stay positive as although it sounds a bit bizarre getting upset, frustrated and feeling down in the dumps only adds to the pain and quite significantly awsell.
Please use this site to learn stuff from others experienced/knowledge etc......
But also to shout.... scream.....rage.. laugh ...cry....vent...share etc
Everyone on here understands what it is like living with and in fibroland....
My 1st post on here was a HUGE vent out of desperation...... and the support and out pourings of love and total understanding was totally amazing..... to be honest a couple of people basically saved my life......
Please join in any time with conversations or post yourself or ask questions etc....
You will be amazed at the love you get back...... being able to talk to others who truely understand what you are dealing with...... well it changes lifes for the positive.
Beautifully said lolly! I'm so glad this place helped you to get through such a dark place also, hope the light shines a little brighter for you now sweet.
We all feel like that at some point hunny, it sucks and it's hard..very hard but we must persevere. Whenever I get like that and have an emotional breakdown a very specific quote comes to mind that just reminds me to keep my chin up......
"You were given this life because you are strong enough to live it"
Believe you are strong enough and you have what it takes to get through because you are and you do! ...remind yourself of that whenever you are feeling low.
Really pleased that you didn't meet the dragon you expected.
The 8 week thing will be a huge help to you if they introduce you to pain coping techniques. Some you will like, others will make you laugh, but in the end you will feel more in control of the Fibro monster.
Look forward to hearing from the 'new' you in a few weeks 😉🐸
I too am on the brink of an 8 week programme. Just waiting for some dates to go for an intro day, and then the course dates themselves.
Like yourself, the lady I saw really shocked me when she understood about Fibro (she was one of the physio's on the pain programme). Often answering the questions herself before I had a chance to. It was so utterly refreshing, and so very different to my ESA and PIP assessments (groan).
It has also helped with my anxiety, as I now feel less anxious about going into a situation not knowing anyone, because I now don't have to explain what Fibro is, and what difficulties I may encounter during the course of programme. How fab is that!!
It feels good to look forward to something, I haven't felt that for a very long time. I feel extremely lucky to be offered a place on such a sought after programme. Just wish that more funding was available for programmes like this to be offered around the country. xx
It definitely is a refreshing feeling and it must be a massive relief for you to know the people in the groups and stuff aren't strangers to a chronic illness!
I too feel like I have something to look forward to to see how it plays out! Totally agree nowhere near enough people know about these programs that are available, it's a shame all doctors don't forward you on to such refreshing help!
I'm glad you are also feeling positive about it all and I wish you all the luck with it all!
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haha. 
at least we'd kind of know one person lol
Update 
Pain Clinic
Fibro pain management session
