One step forwards three steps back. What is the point?

[Lunafair]

Every day is pain and misery for me now. I am so lonely. I am isolated from my friends and family because my problems are just too complicated and out of the depth of anyone who isn't a mental health professional/chronic pain specialist.

My days are filled with nothing, everything I used to enjoy is now such a chore, and most of the time leaves me feeling worse than before I started. Even sleep isn't much of an escape anymore, the few "dreams" I can remember are my mind taunting me about everything I no longer have and all the things that may never be mine.

Since my case was closed at the child/adolescent psychiatrist/psychologist centre and opened at the "Acute Facial Pain clinic" my therapy sessions have stopped. The only care I receive is one or two physio sessions every couple of months & the doctor prescribing me nortriptyline (which they were meant to be raising by 10mg a week, but this has taken them 2months to finally do after they initially agreed they would) but that hardly does anything, and my pain is just getting worse.

I take the approach that I would rather not eat, than have to prepare myself food, eat it, and wash/clear everything away afterwards. I'll eat on average a meal a day, which is usually brought to me by my parents - which just causes me so much guilt too. So I am often void of energy, and find just staying awake sitting in bed exhausting.

The amount of pain my fibromyalgia causes me combined with my depression is debilitating. People on here keep suggesting to me that I should change my doctor, but that would require going to my GP and seeing if I was even eligible for a referral to another clinic of some form (and the Acute Facial Pain clinic i "attend" is at Kings College Hospital, which I thought was meant to be one of the "best" in london?? and they are atrocious in my personal opinion). Even if I was eligible it would take weeks, most likely MONTHS.

And I just dont think I can hang on that long.

I hardly ever see my friends, and if I do i often cant even enjoy it as im concentrating so hard on containing the amount of pain im in along with my social anxiety related issues and wondering if they dont really like me, as everyone who comes into my life just seems to leave in the end.

I am so desperate. My life is in pieces. Im only 18, why am i less worthy of the doctors sympathy and care?

Every time i go back to the facial pain clinic i hope for news that the anethnetist(sp?) team have said that I am worthy of being given opiate-based painkillers, as they are the only ones that have done anything... and I turn up just to be told "No, we never agreed that, I just said that was a possibility". So now I am waiting to hear again. If the answer is "No, you have to keep trying ibuprofen/paracetamol and the nortriptyline, even though we know it doesnt really work" I dont know what Ill do. I am at the end of my tether.

My dad asked the doctor what it would take for me to receive some proper form of care, will it require me getting to a point that i need to be sectioned? That scared me a little. Hes threatened it before, at times that ive been breaking anything in sight and smashing my head/hands against doors/walls in screaming rows at 3am with my parents.

I keep thinking is that where I belong? Should I be locked up? Then will they look after me? I am a burden: to my friends, my family, my doctors, myself.

I just desperately need help. Its not enough for people to tell me that things will be done eventually. I dont know how much longer I can hold on. My problems are just getting worse and worse the longer they go untreated.

I feel like I was never meant for this world, and that I am not wanted here. I cant even differentiate between the "depressed me" and the "undepressed me", i cant tell whats my mental illness talking and whats my own head. My mind is unravelling.

I just dont know what to do. I have tried everything within my power, and everything i try just puts me in a worse place I was before i even tried. What do I do?

[missrat]

The 'care' you are receiving is appalling. It could be worth changing GP. Another thing is to contact the PALS (Patient Liaison Service) at Kings College Hospital to make a complaint. The third thing is to insist on a referral to the adult Community Mental Heath Team, especially as you appear to be developing an eating disorder.

It is also worth joining Reputable internet Fibromyalgia communities, and I'd also suggest Pain Concern - who have a group on here.

Good luck.

Ann

[Lunafair in reply to missrat]

I am signed up to all of the fibro/pain related forums on HealthUnlocked, but may look at other forums, thank you for the suggestion.

And I think I may have to go about contacting PALS - I wasn't aware they existed, thank you for that too xxx

[Suzie40]

Hey

I'm sure registering with a different GP shouldn't mean you'd lose your appointments at the pain clinic?

I'm so sorry you're feeling as you are just now. I'm off to work no, but I'll reply properly when I get home.

Take care ??

[Lunafair in reply to Suzie40]

Well since I seem to be currently in a limbo stage between my GP and the Facial Pain Clinic, and am not being treated properly by any of them despite them supposedly having "taken over my care" from the Maudsly Michael Rutter Centre... I think I need to wait till we actually find out whos supposed to be pescribing my medication and giving me any help before moving to a new GP - but thats definetly what I need to do. xxx thanks

[Jeffju]

I am so sad to read your blog and how you are feeling so very low and you are not being looked after well at all. I have seen suggestions on here before to go to your A & E department at a hospital and tell them you are feeling suicidal and they have to act on it. Desperate feelings need desperate actions as it would seem you are not getting much help at the moment. I think anything is worth a try to get the help that you need. All the very best. xx

[Lunafair in reply to Jeffju]

Thank you for the kind words, but i dont know, that seems very drastic? Im not suicidal so much as I just wish I was dead. I wish I didnt exist, and didnt have to wake up every morning to the same pain with no prospect of anything getting any better, only getting worse. My fear is that as things keep getting worse i will become fully suicidal.

& Id be scared they would institutionalise me which my parents already have threatened to do (which i dont really blame them for because of what theyve had to put up with)... and Im dependant on cannabis to sleep and help my pain/mood issues, so if i were to be put somewhere that I didnt have acess to it, and also to not be given any pain medication besides low dose SSRIs and ibuprofen/paracetamol... i dont know how id cope or even survive.

[wallflower_fairy]

Hi Luna,

I don't it's a big help and possibly easier said than done? But if possible, perhaps it's worth making frequent lists of all your symptoms and pain, including sensitivity, what's aggravated etc. I often find that whenever I write something in list form, it helps me - if no one else - see the true extent of what I have to cope with, it makes me feel better I suppose. I appreciate things are difficult with your parents, and I know how difficult that it, so maybe they could read it and it would at least help them to understand you better and start to soften the friction. Then possibly having the doctors, etc read it, try and imagine themselves in that situation.

If they had any amount of empathy then they might be the thing that motivates them to take you more seriously. (Although I don't dispute that they should already be treating you properly in the first place).

If that doesn't work, then I second the suggestion of other people on here, it might work out if you change your GP, although I can see from your question this is far easier said than done. If you were to change your to GP, make sure you make it clear, from the off, what went wrong before and it should help to prevent it from recurring. Make sure they're aware of all your problems, what I mean is, don't play down any of your issues (as I know that was a habit with me and it never got me anywhere), in fact, you could even exaggerate them a little to reinforce them listening to you.

I know it's not much but I hope this helps a bit.

Sending warm (((hugs))) your way.

wanderingwallflower xx

[wallflower_fairy]

First line -

'I know it's only a small suggestion and probably easier said than done.'*

[wallflower_fairy]

Other mistakes and some things I forgot to add:

Then possibly having the doctors, etc read it, so it's easier for them to try to imagine themselves in your position.

If they had any amount of empathy then that might be the thing that motivates them to take you more seriously. (Although I don't dispute that they should already be treating you properly in the first place - the standards are appalling).

[Lunafair in reply to wallflower_fairy]

youre being so sweet. youre making a huge amount of sense too. thank you. the anethetist (sp?) team have agreed to give me an appointment, lets hope its not months of waiting again. xxxx

[wallflower_fairy in reply to Lunafair]

Hey it's no probs. That's great and hopefully it will be a 'turning point'. Good luck with your appointment. I hope you get it quickly. xxxx

(((hugs)))

*anaesthetist

**(I found it in dictionary.com).

[Hidden]

My heart goes out to you. I am also a Kings patient and wondered if anyone had talked to you about Mindfulness training as a way of helping you to cope with severe pain? It is something that SLaM offer and sounds like it could help you - maybe in the future as it sounds like there are more pressing needs to deal with the physical symptoms. I had to change my GP/medical centre a couple of years ago and it was the best thing I ever did as I now get the support and help I need to manage my symptoms. Like you I felt tied to the old one even though they were not serving my needs. Please do think about doing it and make sure you go to one that is more appropriate. Take care this weekend. x

[Lunafair in reply to Hidden]

I think that SLAM is the childrens/adolescents centre, unless Im mistaken? I think they're the ones who carted me off in a pretty much "bye, now this is your own problem!" kinda way aha, and since Im 18 im not eligible for their service anymore.

Thank you I definitely will be changing my GP, popped in to complain about the fact they hadnt contacted us about prescribing my regular medication and they just said that its not their job to call patients, and they expect patients to contact them.. even though no one had informed us that the GP would be taking over my medication prescriptions... Not on at all. xx

[Hidden]

Hiya SLaM is the South London and Maudsley and Southwark Psychological Therapies Service on 020 3228 2194. This is for adults so you have to be 18+. Could be worth a call and a chat to see if they can offer something to help you. Southwark have definitely changed the service they offer in recent years. Good luck if you do call them.

[Hidden]

Hi, You really are in a bad place and so young to be feeling so very bad. You need help and support. I agree entirely with debra that you should contact the Maudsley, especially as they have first class therapists working there. I went there myself very many years ago for a short spell and it was helpful. Therapy cannot solve problems but it certainly can enable life to feel more meaningful than yours does at the moment. Do phone them, or ask your GP to refer you to them if they are within reach. If they are not then ask your GP to refer you to the local psychotherapy service for in-depth therapy and don't let them fob you off with very short term because feeling as bad as you do you need time to explore things with someone you can trust. Suexx