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New here :) Asking about referral process and what to expect

SimmoMaz profile image

Hi everyone and good morning.

I have a long history of anxiety, depression and stomach issues which have never been sufficiently 'helped' through medication (anti-depressants take the edge off, Lansoprazole helps with some of the stomach issues) or diet.

I also take D3 and B12 supplements as I am vegan. Every blood test has come back normal and I must end up having a few a year at least.

I have also felt excessively fatigued and real issues focussing and concentrating most days since my early 20s (49 now) and put it down to my depression and anxiety.

A chance encounter a couple of years ago led me to the place where last year (2020) I was diagnosed with ADHD which explains an awful lot from my past. To add to the pharmaceutical cocktail I am now on Elvanse too and again, whilst these have helped manage some of the symptoms and allow to work more effectively I am still always shattered no matter what.

I too had the same experience of others here where a GP said 'we've tried everything, you'll just have to live with it' Wow. Thanks. A friend with Fybro told me to keep a diary and refer to my GP which I did about a month ago and on speaking to them he referred me to a CFS specialist........which has been accepted.

I am now awaiting paperwork from the specialist and wondered if anyone has any advice on how things go when you get to this stage? The fact they are willing to see me suggests there must be sufficient evidence to believe this might be the case.

There are possibly no answers to this but seeing as my wife knows I struggle every day I can't keep on at her about it as she has her own life to live and struggles to overcome. This is a bit of a brain dump to say hello, set out briefly where I am and to see if anyone can help me understand what to expect.

Thanks in advance whether you can help or not, mainly just for reading this far!!

S

9 Replies

I went to the CFS centre in Liverpool. I saw a consultant who asked lots of questions and then referred me to his clinic in Broadgreen hospital. There I was treated by occupational therapist who was very good. They talk to you one to one for about an hour and get you to try and accept your diagnosis and give you a strategy for getting your life back to some kind of normality. I went there for around 4 months and found the course very helpful as they know how you are suffering especially when like me you don’t say everything to your family. I now have coping strategies when I am feeling bad. My CFS has ups and downs but understanding it’s many symptoms really helped me. Hope you get on ok with your appointment.

SimmoMaz profile image
SimmoMaz in reply to Patdoyle

That’s great, thank you for the info and I am really pleased to read that this has helped you.

I guess my uncertainty at the moment is whether a referral to the CFS specialist often leads to a diagnosis as I imagine there must be enough ‘evidence’ from my medical records to believe it is worth seeing me? I know you can’t answer that but I like to put my thoughts down as it gets them out of my head!

Patdoyle profile image
Patdoyle in reply to SimmoMaz

The guy I saw diagnosed me after a few questions. He had my test results from my GP so he knew I’d had lots of tests to rule out anything else. I was still a bit sceptical because I couldn’t believe how bad I felt and tests showed nothing apart from low vitamin D

You could look a bit more at B12. For some people diagnosed with CFS/ME this is either an underlying problem, or even if it isn't, it can help to have injections. You'd need to check folate levels as well as they work together.

It may be that you cannot absorb B12 properly from the supplements, and you are vegan so not getting it from your diet, however, the supplements will show a high level in the blood test so that the underlying problem is not identified. Some people with blood tests in the 'normal' range are highly symptomatic. It doesn't always present as anaemia but with neurological, emotional and fatigue symptoms. Stomach problems can be another indicator. The other tests for B12 are inconclusive as you get false negatives or positives.

There's a forum on HU where you can learn more or you could read 'Could it be B12?' by Sally Pacholok..

The specialist my daughter saw said she was a borderline case and he wasn't sure what she had, the first time she saw him. Her fatigue isn't as bad as some people have, and maybe she answered the questions in terms of what she could do on a good day, not on a bad day. He sent us away with a list of supplements to try, which we tried most of - the last one was something he could in principle have prescribed (according to our GP, who wouldn't prescribe it on their own authority), and we could only have gotten without a prescription by ordering it from abroad, which I was reluctant to do because it's harder to guarantee the safety and efficacy of what you're getting that way. Also what I read about it didn't suggest it was likely to help.

Anyhow, it was also clear from the first appointment with him that one of the things he was looking for to give a diagnosis of CFS was delayed-onset fatigue, and my daughter didn't think she got that. However after going away and reflecting on it for several months, she decided she actually did, and this seemed to flip the scales in the direction of a CFS diagnosis next time we saw the specialist.

This meant they had a programme they could offer us - whereas they had really nothing to offer for chronic fatigue not diagnosed as CFS. Their programme was based on graded exercise and CBT, which at the time were thought to be the only treatments for CFS with any measurable success, but the research has since been discredited and the new NICE guidelines advise there is currently no known effective treatment for CFS (but don't despair if that's what you have - there's a Stanford researcher named Ron Davis who's been doing ground-breaking research on it, and is highly motivated to find a treatment because his son is badly afflicted with it.. also it does sometimes clear up on its own).

I think the programme they offered was helpful for the people on it, even if the treatment side of it was based on misguided thinking, because it included information about what is known about the physiology of CFS and about how to rest and what kinds of rest are beneficial, about how to manage your time and energy to avoid crashing and triggering that delayed-onset fatigue, tips on sleeping better (a problem area for my daughter who can take hours to get to sleep) and just a chance to spend time with other people stuck with the same difficult problems and listen to how they're affected and how they cope.

This was in Surrey, things may be quite different elsewhere. Good luck with it.

Thank you so much for this, it is really helpful and interestingly enough I am on the SW London/Surrey border. I know I can only go with what they say based on the honest information I give them - as with most things I guess it is the uncertainty of the outcome that is the frustrating thing and wanting answers, even if it is just to be able to know why I am the way I am without jumping from one diagnosis to another!

Thanks so much for sharing your experience.

S

I went to the CFS centre in Bath and had an hour long conversation. They of course had all my blood tests and other results and I guess were just checking up on my description of my symptoms. I was diagnosed there and then and offered a 6 week treatment with a specialist OT. Graduated Excercise Treatment had thankfully already been discredited at that point (it tends to make us more ill, not better!), so the treatment was much as others say, aimed at getting you at some kind of peace with the diagnosis, and then to work on awareness of and coping strategies for the various symptoms.

In total I got 6 one hour sessions with the OT, one to one via video call. They did offer group sessions too but the drive was too much for me to commit to, and I guess now with Covid that's not happening either.

After my 6 sessions, I had one more follow up after 6 months and was then discharged.

I have to say those sessions were really helpful for me in order to better understand and manage my condition. They also got me back to mindfulness/meditation which I find helps a little with the fatigue but a lot with accepting my illness.

SimmoMaz profile image
SimmoMaz in reply to murtoz

Hi murtoz and thank you for your reply, it is really helpful and I'm so glad it helped you. I've had an awful lot of therapy to help me cope with my anxiety, depresssion, ADHD etc. but I do still have bad days where it all gets too much (very much these last few weeks when it feels like I am going to fail at everything I do - just because I am so exhausted)

The interesting point you make is about getting back into your mindfulness/meditation. I am a practicing Buddhist and I used to chant everyday, I also did yoga twice a week but I have done neither of those for over a year and on reflection I have definitely been worse through not doing those.

The good news is the CFS clinic called me last week and my referral has been accepted so now I am waiting on the necessary paperwork to take things onto the next stage.

Thanks so much once more

S

murtoz profile image
murtoz in reply to SimmoMaz

Happy to help. Good luck with your referral.

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