Getting a Diagnosis: Hi, I am new to... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Getting a Diagnosis



I am new to this forum.

I have not received a diagnosis of Fibro, my Dr seems to be reluctant to commit to this. I have been tested for Lupus, polymyalgia and Multiple Sclerosis - all negative.

I had a traumatic event some 6 years ago (actually there were several one after another), I think these were a trigger.

I have pain, muscle cramps / spasms. Restless legs at times so bad I cannot tolerate a duvet on them and have to stuff pillows under the bed clothes. I also suffer from Raynaud's in my fingers, Irritable Bowel Syndrome , Diverticulitus, Osteoarthritis and my brain is pretty fuddled much of the time.

I was born with Neurofibromyalgia (NF) which among other things cause Fibromas (tumours) to grow along nerve sheaths. I do not know if there is a link between all these but obviously I have been very greedy to have all these conditions.

Sadly my mother died yesterday and there has to be a post-mortum I am going to sort everything out on my own. So my stress levels are going to go through the roof.

I take Gabapentin, Amitriptyline, they help a bit.

I am going back to the doctors on Friday and seeing someone else in the practice who I hope can help.

I am fortunate that my new neighbour is great, she has similar health issues so we help each other.

My most valuable helpers though are my Cat (BJ) who purrs most of the time and keeps me entertained with her antics. My dog Milo who rarely leaves my side but will not take no for an answer where walkies are concerned!

So life goes on.

5 Replies

Hi vivdk Welcome to our wonderful forum, I'm sure you will love it and find it invaluable chatting to others who are going through the same as you, at different stages of their lives with fibromyalgia.

You really have come to the right place my friend and I look forward to chatting with you on the forum.

I'm so sorry for your loss my friend, you must feel very lost and as you say, all very stressful and will effect your fibro and worsen your symptoms. It's great you have such a good neighbour and you can lean on each other, it means so much docent it ?.

Milo looks like a bundle of fun & cats are so good & showing their love for their owners. I have never come across NF before & didn't know you can have from birth, so I'm going to investigate that right now. I have Polymyalgia as well as fibro and nerve damage in my back and feet, so I know how you feel, IBS is a common symptom of fibro, something I've been suffering with the last few days. There is other medication you can be given to help these symptoms. It's good your going to see GP, hopefully your meds can be increased to help with everything and maybe you can be offered something else to help you through this flare.

Please do go check out the mother site where you will find lots of useful information and links on fibro and I look forward to chatting with you on the forum

Peace, luv n light

Jan xx

It's a good idea to lock your posts to the community, so it's not open to the internet. If you look to right of screen you will see under "Pinned Posts" a link to simple instructions on how to lock it.

Hello there

Welcome to our lovely forum :)

Please accept my most sincerest condolences on the loss of your mum.

If you do have Fibromyalgia you will almost certainly go into a "flare" of your symptoms especially as you are having to cope on your own.

This is when all your usual symptoms that you get go into a heightened state.

Would you mind me asking you if you currently take any antidepressants at all? It may well be worth your while discussing with your GP whether a short course may help you over the coming few weeks.

Obviously we cannot diagnose you here as we are not medically trained. However, I would definitely ask your GP for a referral to see a Rheumatologist. They are the specialists that deal with Fibromyalgia.

I am glad that you have your pets as company. They look wonderful :)

If I can help you navigating your way around the forum, please don't hesitate to give me a shout and I will be more than happy to help.

Please take care of yourself

Lu x


PS Here is a link to an easy to follow guide on how to lock your posts:

Just click on the blue line above and the guide will pop up.


Hi there and sorry for all that youve been through...this is definitely the right place to be.xx

Hello and a warm welcome to or friendly fibro forum where you can get help, advice, support and understanding.

I am sorry to hear of the loss of your dear mother. You must feel all sixes and sevens at the moment. Give yourself time to sort all of this in your head, and if possible ask for help from a close relative or friend to see you through all the paperwork and so on.

Some doctors are reluctant to label a patient with fibro and sometimes it can be a double edged sword. Once you have a recognised condition it can be an excuse for doctors to blame everything on that and not look further, even if you do have other symptoms, also there is a perception that fibro is all in the imagination.

On the other hand having your diagnosis means you can research and treat your symptoms with a much more informed view and meet new friends here too :)

Please look after yourself at this difficult time.


Hi vivdk

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so truly sorry to read of the sad loss of your mum, and I would like to offer you my deepest condolences my friend.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you


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