UK NHS initial hospital appointments - what to expect?

[keepswimming]

Hi all,

I am a step closer to getting a CFS diagnosis as my doctor said last week he thinks I may have developed CFS and has referred me to hospital. (I had EBV 11 months ago and have had CFS symptoms ever since. In recent months my symptoms have got worse not better).

I have two appointments - one with the infectious diseases clinic as my illness started with EBV, and one with Rheumatology as apparently they deal with CFS...

I just wondered if anybody has been through this process and what to expect. What will they want to know, is there anything in particular I should make sure I mention? What happens once I get a diagnosis? I want to make the most of the appointments, and come away with a definite diagnosis if possible.

Many thanks x

 

[ryan31337]

Hi @keepswimming,

In most cases the Rheumy/Infectious Disease NHS clinic will only be looking to exclude other common serious disease. I would say 9 times out of 10 you will just be discharged back to the GP with no help whatsoever, other than being told you aren't dying of x, y or z.

In the absence of another identifiable disease, you may find one of the consultants makes a CFS diagnosis, or at least strongly suggests it. If its Rheumatology they might also use Fibromyalgia as a diagnosis interchangeably. Either way, it is really only an acknowledgement that you are sick, it won't lead to any effective treatment or further management from them.

The best you can hope for in this instance is to get some help managing your condition at an NHS CFS clinic - though these are a mixed bag and should be approached with caution. There is little interest in finding out what is making you sick, just approaches like pacing, graded exercise and positive thinking that may help you or may make you worse. In rare cases you may be seen by a doctor at these clinics who could direct you to other specialties if there is something more obvious going on that your GP has missed.

From a practical point of view of obtaining investigations and treatment that might lead to better outcomes, I would avoid the CFS diagnosis like the plague. You will get better results if you can focus doctors onto some of the overlapping and more identifiable syndromes that many CFS patients have. You have a lot more scope for help and specialist clinics if you get a diagnosis of POTS or hypermobility syndrome, for example. It can be difficult to get the ball rolling on this though unless you have a really excellent GP, or pay to see a specialist that has better awareness of these complex problems. Or you spend years here learning and become your own case manager...

Sorry if that sounds a bit negative - 25 years experience unfortunately! I will cross my fingers for you that one of your appointments will lead to a better diagnosis. To be honest you're already doing a lot better than many with suspected CFS do to get appointments with infectious diseases and rheumatology at this stage.

Ryan

 

[keepswimming]

Hi @ryan31337

Sorry it's taken me a little while to reply - thank you very much for your response. I'm grateful to hear your experience - I would much rather go to these appointments with my eyes open and not get my hopes up if they are unlikely to help! It sounds like this is the beginning of a long journey...

Fortunately I do have a good GP, who listens to my concerns, which is the main reason why I have been able to get these hospital appointments! So hopefully having a good doctor might help me in moving forwards, and I appreciate your advice in how to do that.

Many thanks again ☺️

 

[ryan31337]

You're very welcome @keepswimming. If you find yourself out of options locally and are able to pay to see someone privately, I can recommend a very good doctor (Endocrinologist by training) in London that specialises in 'complex fatigue conditions' who would definitely have some further ideas.

Many patients get exasperated that there are no/few good CFS specialists in the UK. My experience is that there are some really excellent doctors, but they avoid using the term CFS because it generally shuts down avenues for further investigation and treatment, unless they are willing to ignore CFS policy/guidelines... and we all know how that ends for them.

But again, I don't want to sound too negative! My first hit of CFS came after EBV and took a full 2 years to get over, but eventually I regained ~70% function, got back to school and later completed undergraduate uni before other problems came on in my twenties. Others don't relapse and carry on fine for the rest of their lives. I hope its the latter for you

Best of luck,
Ryan

 

[keepswimming]

Thank you I will bear that in mind! And hopefully the doctors I meet at the hospital will be some of the good ones...

But again, I don't want to sound too negative! My first hit of CFS came after EBV and took a full 2 years to get over, but eventually I regained ~70% function, got back to school and later completed undergraduate uni before other problems came on in my twenties. Others don't relapse and carry on fine for the rest of their lives. I hope its the latter for you

That's comforting to hear! 70% function sounds wonderful at this point... Thank you for sharing your experience. I am trying to learn to accept my situation, as I think that will help me cope with it better - but its good to have hope as well! ☺️

 

[Tella]

You're very welcome @keepswimming. If you find yourself out of options locally and are able to pay to see someone privately, I can recommend a very good doctor (Endocrinologist by training) in London that specialises in 'complex fatigue conditions' who would definitely have some further ideas.

Many patients get exasperated that there are no/few good CFS specialists in the UK. My experience is that there are some really excellent doctors, but they avoid using the term CFS because it generally shuts down avenues for further investigation and treatment, unless they are willing to ignore CFS policy/guidelines... and we all know how that ends for them.

But again, I don't want to sound too negative! My first hit of CFS came after EBV and took a full 2 years to get over, but eventually I regained ~70% function, got back to school and later completed undergraduate uni before other problems came on in my twenties. Others don't relapse and carry on fine for the rest of their lives. I hope its the latter for you

Best of luck,
Ryan

Good to hear! Were u ever severe? Did u not recover after the relapse n how long did it last for?
After re NHS. Horrible! Avoid cfs label.
surprised they even referred anywhere