Hemiplegic Migraine & Fibromyalgia: Final Answers

[LeliBug]

Finally received a “proper” full diagnosis (by someone who actually spent more than 3 seconds with me) for everything I have spent so long suffering: Hemiplegic Migraine with Fibromyalgia. Also known as “FHM” (Familial Hemiplegic Migraine), and “Migraine Varient Syndrome”. Causes both numbness and chronic pain – a walking, confusion oxymoron that has make no sense for years now.

I had never heard of this before, but I must admit when you put the two together, it covers everything... which is maybe why no one saw it before. It's taken 3 1/2 years jut to get answers. Unfortunately, those answers seem to come with more questions, because there's really nothing that can be done about it, especially if you have zero tolerance to most medications.

It's an answer and that makes a difference, but there is no miracle cure. I take comfort that I at least know what's going on now. Answers matter and are comforting, especially when you've spent over 3 years wondering what on earth had taken your entire life away from you.

[Heppie]

Hi LeliBug,

Sorry to hear you have such a debilitating condition. I have a friend who has suffered with hemiplegic migraine for many years (I only 'met' her last year after she accidentally sent me an email from a hospital bed thinking it was her mum's email address). We've been corresponding ever since! She lives alone in the south of England and has spent much of her time enjoying life on various holidays abroad, and after being taken off a recent cruise to recover in a hospital in Mauritius, she is about to embark on another cruise this week! She seems to need to spend several weeks in hospital when she is bad, and is dependant on help even when she is well, so I don't know whether her condition is worse than yours, but she seems to live life to the full regardless!

[LeliBug in reply to Heppie]

Thank you very much for replying to my post, Heppie. I really appreciate that you thought to let me know about your friend and what she has to go through. It is such an uncommon condition it's actually good to know that I'm not alone with this. Your friend's condition sounds like it can be much worse than mine. However, it has got to the point where I am now cared for at home, so I no longer need to try and look after myself like your friend does - I imagine that must cause her extra difficulties and distress when she has the severe flare-ups of the paralysis etc. I admire her ability to go away and visit such great destinations - and I'm sure the weather and relaxation of going to such places much help ease the condition an awful lot, and obviously lots of fun!

Mine seems to be "permeant" now - it doesn't go away anymore, and it's been complicated by fibromyalgia, which is unfortunate. I've unwittingly had it almost my entire life, with the paralysis dismissed by medical professionals all the time because I have ASD / Asperger Syndrome as well. Doctors never took me seriously because of this, and it just eventually got to the point where it never went away after a severe bout of pneumonia at an excessively stressful time in my life.

I would love to be more like your friend and be able to take opportunities to visit amazing places and not let it get in my way - I now have a new bar set to reach with this! Her clear zest for life is amazing to hear about, is heartening, and I shall take a lot away knowing someone else out there with this doesn't let it dictate their lives to them. So thank you once again for letting me know about her. She seems quite inspiring!

[Heppie in reply to LeliBug]

I told my friend and she said:

This was encouraging for me too.

Sometimes it can be a very lonely place and one can think that you are the only one suffering.

😁😁😇😁