New to forum

[Rheadster72]

Hi all! I'm new to this forum and just wanted to share my story and see if it is a familiar story to others with a diagnosis. Essentially I'm in search of a diagnosis and have been 'around the houses' over the last 2 years. Prior to this I was very fit - competing in numerous triathlons. It all seemed to start with numb/tingling feet and back pain (near my shoulder blade as well as lower back) MRI showed nothing untoward for a middle aged bloke! Meanwhile the numbness/tingling also started in rest of legs, hands and face. This was also accompanied with tinnitus although I tend to describe it as less a ringing in the ears but more like a fizzing in my head! Having seen a stubborn and unsympathetic GP (who just wants to treat me with antidepressants) several times I managed to eventually get a private referral to a haematologist and rheumatologist as well as an NHS referral to a neurologist and ENT over the space of 2 years. After nerve conduction the neurologist confirmed peripheral neuropathy and suggested varies drugs. I currently take amitriptyline for that. The strange symptoms continued. The most worrying I found to be brain fog. After seeing the haematologist he agreed I should try B12 injections. Again the GP was reluctant so I self-inject with some I get from Germany and have continued for 1.5 y injecting about once a month. These helped with the brain fog and tend to give a boost of energy for a couple of weeks but sadly doesn't resolve the other symptoms that are pretty random. The latest visit to the GP has resulted in a brain MRI (as I've been complaining about headaches and a feeling similar to a hangover that i describe as 'cloudiness') and thankfully this new GP is much more empathic. Brain MRI normal and so she has suggested referral to the fatigue clinic. From this I gather we are at a stage where it doesn't seem to be anything else so maybe ME/CFS fits. From what I've read it does seem to be a fairly good match for the symptoms and having ruled out most other conditions from the numerous blood tests.

I have found it a bit of a struggle over the last 2 years with the frustration of not just the randomness of the symptoms but also that everyone seems to think that I'm making it up - hyperchondria! I know there is something wrong but all the tests so far are inconclusive/negative.

Does this all sound familiar? Any thoughts and support most welcome.

[nickyb21]

Hi there! I’m so sorry you’re suffering with these symptoms. I have me/cfs and fibromyalgia and some of your symptoms are very similar. Mainly the brain fog, tinnitus , headaches and feeling like you’ve got the worst hangover mixed with flu. Does your hospital have a cfs clinic? If so ask the GP who’s sympathetic to refer you and hopefully you’ll get some answers. Having to deal with people who think you’re not really ill or who dismiss the illness as trivial is very common sadly. The amount of people who accuse me of not looking ill is crazy. When someone says that now I say thankyou. I mean who wants to look ill!! Please know that you’re definitely not a hypochondriac. The symptoms of me/cfs are very debilitating leaving you feeling very poorly.

I also felt that I wasn’t being listened to and it took me four years of persevering and getting some knock backs to finally get to the bottom of what was going on.

Keep going back to your GP and don’t be fobbed off. You have a right to know what’s going on.

I told my doctor that I thought I had me/cfs and asked to be referred to the cfs clinic. Like you I knew that something wasn’t right and I kept going back until I was listened to. It’s really hard feeling really poorly and not being taken seriously by the people who are supposed to be there to help you. Don’t take no for an answer. You have a right to know what’s going on.

I’ve only been diagnosed two years and was diagnosed with fibromyalgia in December so I’m still learning.

I hope this was helpful. Good luck!

[Rheadster72 in reply to nickyb21]

Thanks for the reply. Thankfully after numerous visits to an unsympathetic GP we have a new GP at the surgery who suggested she refer me to the nearest CFS clinic. Just waiting for the referral to come through now.

Incidentally, I was listening to Jeremy Vine on Radio 2 today and they were discussing Lyme Disease. Some very similar symptoms there and assume my numerous blood tests so far haven't tested for those antibodies and ruled that out.

I have a stubbornness when it comes to Drs and so I certainly don't take no for an answer no matter how tiring and frustrating it gets.

Hopefully the CFS clinic will at least have some answers for me... here's hoping!

[nickyb21 in reply to Rheadster72]

Oh I’m so happy you’ve been referred to a CFS clinic. They’ll definitely help you get to the bottom of things. My consultant at the CFS clinic was amazing and helped me a lot. Once you know what’s going on you’ll be able to plan your recovery.

I wish you the best of luck.

[Rheadster72 in reply to nickyb21]

I wasn't sure about agreeing to referral to CFS clinic but sounds like I have made the right choice. Like you say it's a case of wanting to know what's going on with all these weird symptoms so I can at least deal with it on a mental level.

Thanks for your support.

[nickyb21 in reply to Rheadster72]

Oh you’re so welcome! Battling these illnesses is hard and you can feel very alone. I know I do at times.

I’m sure the CFS clinic will be very helpful. You brought up a very good point about being able to deal with things on a mental level.

I try and stay as mentally strong as possible because day to day life can be draining and challenging. For me meditation works and I’ve been reading lots of spiritual books.

There’s lots of different avenues that you can venture down to quieten and calm the mind.

Take care and I wish you the very best of luck.

[Caro7]

👋 yes all sounds very familiar to my story, not that I was a triathlon athlete! I self inject B12 as recommended by my neurologist so I get it on the NHS. good luck