If you need urgent support, call 999 or go to your nearest A&E. To contact our Crisis Messenger (open 24/7) text THEMIX to 85258.
Read the community guidelines before posting ✨
Options
Fibromyalgia and NHS mucking up
Former Member
Posts: 1,876,323 The Mix Honorary Guru
I've been struggling with trying to get correct diagnosis/treatment/medication for what the drs are now 95% sure is fibromyalgia for over a year.
I've had so many muck ups with referrals and tests - my previous GP took over 6 months to refer me to the pain clinic, did 25 different types of blood tests, many of them multiple times, tried me on at least 5 different combinations on medication at various different strengths, pain scoring questionnaires. The pain clinic that he referred me to rejected me twice - once for another test to be done, and then again because they said that they don't treat people with fibro (not that it was confirmed then or even now, still). I've since found out thats not the case. So I was referred to the regional ME clinic - an occupational therapist saw me and basically said there was nothing they could do for me because she could rule out ME within the first 10 mins of the appointment, and they've referred me back to the same pain service that wouldn't see me before. Oh, and aparently I'm on the wrong pain medication and anti-depressants.
On that note, the pain has been so constant and severe that at times I've up serious thought into either causing serious harm or killing myself because I just can't take it. It could be another 6 months before I get to see the pain clinic now and I just don't know what I'm going to do! I've just been told I've been referred to the mental health recovery service, which is great but I don't know if they can have any sway over the waiting times with the pain clinic. But I'm also looking after (not caring for but I do more than I probably should) for my housemate - she has Chrohns disease and has just had a major flare up, and she also has mental health issues and is waiting for a referral to the recovery team. I wouldn't not live with her for the world right now, but its so sodding hard with both of us. I'm spending day in day out just eating and sleeping and reading self help books to try and help myself if no one else will.
I'm looking at getting myself on the expert patient program because I'm so at the end of my teather I don't see I have very many other options. I'm doing everything I can think of but I'm really open to suggestions. One concern I have right now is trying to work out whats fibro pain and whats something totally different that I need to raise separately with the GP. What to do about sticks/crutches is another, and WTF!!>?? I do about my self esteem and mood with this condition getting my down so much.
Sorry this is part asking for advice and part rant, I just don't know what to do any more. I'm on the UK Fibro boards but I just told to accept the condition and how I am now - which is just not something or someone I want to be!!!
Help?! Any ideas/suggestions/words of encouragement?
I've had so many muck ups with referrals and tests - my previous GP took over 6 months to refer me to the pain clinic, did 25 different types of blood tests, many of them multiple times, tried me on at least 5 different combinations on medication at various different strengths, pain scoring questionnaires. The pain clinic that he referred me to rejected me twice - once for another test to be done, and then again because they said that they don't treat people with fibro (not that it was confirmed then or even now, still). I've since found out thats not the case. So I was referred to the regional ME clinic - an occupational therapist saw me and basically said there was nothing they could do for me because she could rule out ME within the first 10 mins of the appointment, and they've referred me back to the same pain service that wouldn't see me before. Oh, and aparently I'm on the wrong pain medication and anti-depressants.
On that note, the pain has been so constant and severe that at times I've up serious thought into either causing serious harm or killing myself because I just can't take it. It could be another 6 months before I get to see the pain clinic now and I just don't know what I'm going to do! I've just been told I've been referred to the mental health recovery service, which is great but I don't know if they can have any sway over the waiting times with the pain clinic. But I'm also looking after (not caring for but I do more than I probably should) for my housemate - she has Chrohns disease and has just had a major flare up, and she also has mental health issues and is waiting for a referral to the recovery team. I wouldn't not live with her for the world right now, but its so sodding hard with both of us. I'm spending day in day out just eating and sleeping and reading self help books to try and help myself if no one else will.
I'm looking at getting myself on the expert patient program because I'm so at the end of my teather I don't see I have very many other options. I'm doing everything I can think of but I'm really open to suggestions. One concern I have right now is trying to work out whats fibro pain and whats something totally different that I need to raise separately with the GP. What to do about sticks/crutches is another, and WTF!!>?? I do about my self esteem and mood with this condition getting my down so much.
Sorry this is part asking for advice and part rant, I just don't know what to do any more. I'm on the UK Fibro boards but I just told to accept the condition and how I am now - which is just not something or someone I want to be!!!
Help?! Any ideas/suggestions/words of encouragement?
0
Comments
Unfortunately, as an adult in the big bad world you do mainly have to look after yourself. There is no magic combination of pills that will make everything better, and there isn't a magic solution sitting out there that you just need the right referral and to be bumped to the top of the waiting list for.
It sounds really harsh, but the only way I can see you making any significant progress is to stop thinking that the world owes you care and attention and to start taking more responsibility for yourself. Managing your abilities, manage your problems, and look at what you can do rather than constantly whinging about what you can't do.
I am a firm believer that one of the key steps in learning to live with any condition is a positive attitude towards the overall picture. Hence constantly complaining about everything won't help this.
Yes, you need the right medical care, but you also need to acknowledge the limitations of medical science. Now, it might be that in general Miss Riot has a can do type attitude and the posts on here are only about the bad bits, in which case the constantly whinging comment is not accurate.
It clearly wasn't advice you wanted, because it was just a much more blunt version of what has already been suggested to you of trying to accept where you are now for the time being and try and get on with things rather than let the problems take over your life entirely. The expert patient programme is a positive thing from the point of view of trying to understand your condition. The fact that's your positive example kind of proves my point.
How about working out what you can do? Is there anything on the Fibro group discussion about daily routines, about hobbies, about sports/exercise, about dealing with getting shopping done, about volunteering, about having some purpose to your day to day life?
Miss Riot I'm really ignorent about fibromyalgia, but whilst that's being investigated by the NHS it seems like the only thing you can do is work on how low you're feeling- which is what you've been doing.
It's great that you've been referred to the Mental Health Recovery Service. Do you think you're able to be open about the support you're providing to your housemate? Because I think this is having added strain on you. It's obvious you're a great friend but I can't see how you can continue supporting your friend when you feel so low.
My advice seems easier to say then actually do but maybe now is the time to concentrate on yourself and give yourself a little tlc. Tackle each day as it comes, in bitesize chunks because you've been through an awful lot recently and don't beat yourself up over anything you feel unable to do right now.
MissRiot, I can see why you're upset - being told you're whinging when you're in constant pain and feel consistently low is hard and as I've said in other threads, if someone seems as though they have no compassion in their reply to a thread, then even if somewhere hidden in their criticism is some encouragement, it can be a struggle to acknowledge and accept it. The quote above is the part of Scary's replies that I genuinely think is worth listening to and would also be interested to hear your thoughts on.
I also think that it would be cool to hear from you on the boards when something positive happens to you - we always know when something is difficult, but don't often get to find out if something has made you smile. Apologies if you sometimes post in the 'relatively happy joy joy thread' and I've missed it - it's hard to follow everyone's journey there - seeing the odd thread that's positive about you uniquely, would be really cool.
At some point there has to be an assessment of just how many buckets of the softly-softly need to be applied before a reassessment of their efficacy undertaken.
Everytime I suggest something on the fibro boards they just say "just accept you can't do it and live with it". I don't want to just sit on my arse and watch daytime TV like most of them do, but I cannot find a balance - Earlier I walked for 20 mins because I missed the bus, but now I'm in a tonne of pain - but I need some exercise. The line seems to be so fine as to what is ok and what's not.
I spend a good deal of my working life doing this assessment and it's a complex one. There is a simple side to this issue though, which is that there's rarely justification or value in taking a condescending tone with someone who is struggling, regardless of other factors, because often it isn't the kind of advice that acknowledges the barriers someone is facing, but rather can be summed up as "Pull yourself together." I really don't want to derail this thread from support for MissRiot though - so if you do actually have some genuine words of practical encouragement, it would be good to hear them.
Miss_Riot, I'm sure this has been mentioned before, but have you tried swimming?
No most of the stuff I'm reading is pain management/self help/improve your self esteem books - because if the drugs and the docs aren't or can't then I need to make myself feel better, physically and mentally.
No I don't post much happy stuff, I am feeling pretty down at the moment and the only happy stuff in my life is pretty small and not stuff I shout about I guess - like I've changed the throws on the sofa and now it's much comfier, I had a good take away on Monday that was bought by a new friend who is very understanding. But that's about it ATM, I'm trying to make tracks but its not easy.
I'm glad you're able to identify these things - they're really important in the grand scheme. Being able to make your home your own and having people you can count on as friends can easily be taken for granted if we're not careful. Taking the time at the end of each day to pull out the positives can help to prevent dwelling on what's been really tough and slowly but surely help to refocus your energy into activity that is beneficial to you.
I don't think I've used a condescending tone nor do I think anyone else has. The distinction between condescension and a change in tact based on a pragmatic recognition of demonstrably failed methods seems, to me at least, not quite as simple as you'd have it.
I'm pretty sure two thirds of my last post was dedicated to the examination and suggestion that Miss Riot appears to have let the focal points of her life get completely of out whack and that a redress is in order. Advice she seemed to think was useful.
I understand where your coming from when people think your lying because they don't see anything physically wrong with you.
A little history: two years ago I severly damaged a muscle in my back and I was told I would never do strenous exercise ever again, I would never be able to walk, stand or sit for long periods, I basically had caused so much damage it was "irreparable" and I would "have to live with the pain forever more". My muscle became infected from the damage and the infection spread to other organs and I suffered with severe swelling of my back and ribs...
Now for someone who enjoys the gym, etc I was pretty peeved to say the least and others never understood when I would say I was in pain because at 21 no-one should be that "unhealthy". It had a massive impact on my daily life.
Two years on - tons of different meds tried, so many arguments with healthcare professionals and constant fights to get myself pushed to the top of waiting lists for Physio, Chiropractic treatment, etc...I now lead an active lifestyle and am now a member of the gym once more and I am pain free 99% of the time and any discomfort I now have can be managed with mild pain relief...all the things the medical profession told me would never be the case.
This isn't supposed to make you feel useless, worse, etc...I just wanted you to know that all the hard work you are doing now to get the help you need is worth it. I know that it feels like your banging your head against a brick wall when it's constant rejection but I learnt the more you pester them, the more they get sick of seeing you and will do all they can to help you and quickly. With regards to reading self-help stuff, I found reading some of the things online helped as I could go back to my doctor with a little more info (it took them ages to work out it was muscle damage!) and some of the self-help treatment ideas were ok but I also found reading about it too much made me feel like I would never get anywhere and that I was stuck with it forever.
Sometimes the wait can be a while and I know muscle damage and fibro are totally different but they are both invisible pain to the outside world and I understand the constant fight with the NHS services...I guess I just wanted you to know I get it...
However, as Helen said - remember the positive things that happen - however small they are...they really do make a difference. Also, as mentioned before, please consider whether helping your housemate right now is helping you...your health is just as important.
Fair point
To try and cover points that other people have talked about - yes I'll talk to the recovery team about my housemate, doubt there is much they can do though its not like I'm her carer, I'd like to go swimming but I get freaked out about going to places I haven't been before on my own and I haven't worked out the bus route. Fingers crossed I can go with my housemate as soon as she is feeling better.
I do have issues with not getting emotionally tied up in other peoples stuff - anyone I care about I find it hard to not want to dive in and help, even if they don't want it. I know this takes a toll on me but its so much easier to look out and after other people than it is myself.
I think I've realised what part of my problem is atm - I have such a short attention span I forget what I was doing half way through or what I was going to do, thus nothing is getting done. I'm like a little magpie, the slightest shiney thing is distracting my attention and what i was thinking about previously is gone. I've been using reminders and stuff on my phone (but they don't always go off which is annoying!!), but I obviously need to try a different strategy.
Let's hope the recovery team are good for you, maybe if either the mental health side of things or the physical side of things showed an improvement then the other would naturally improve as you would feel better.
I think if the physical got better then my mental health would come on in leaps and bounds. Having to spend today in bed/on sofa (if I can crawl that far haha!) because I over did it yesterday, even though I didn't think I did much more than I did the day before - but I think not using my stick yesterday probably made a difference.
If I can I might go to the lido later, it's only round the corner (I totally forgot, kept thinking about the leisure centre instead) and the water might ease stuff up, but I'm guessing lidos aren't heated?
How far did you get into looking into hypermobility? I've been discovering a few more things myself recently, in that what I've actually got isn't just hypermobility but Ehler-Danos Syndrome Hypermobility type, which is why it's linked to all the other conditions including IBS, easy bruising, varicose veins, balance/travel sickness issues...It's really difficult to get this diagnosis though, and I'm not the only one struggling - http://www.experienceproject.com/stories/Have-Ehlers-danlos-Syndrome-Type-3/1229745.
Have you ever had access to an occupational therapist to look at practical aids that can be provided for daily life?
I didn't get to look into the hypermobile stuff much because the GP did say that the pain was the major problem thus most likely to be fibro, but I did think about EDS - a good friend has it and she is now a full time motorised wheelchair user. Thats a bit of a scary thought
Haven't been able to get access to anyone other than who I've seen already and now a pain clinic referal (who aparently have their own PT/OT/psych team/etc...). Roll on next week because I'm getting sick of it all so much. Seriously having to look at moving to somewhere ground floor after this year.
Anyway, I am in no way qualified to diagnose, but i'm finding that this is a really underrecognised condition and so it takes quite a bit of pushing to get a proper diagnosis, and then work out care strategies from there.