What do I do now : Hi im new to this... - Fibromyalgia Acti...

Fibromyalgia Action UK

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What do I do now

Kane1 profile image
9 Replies

Hi im new to this site and fibromyalgia. After years of pain and mental health i finally got a diagnosis of fibromyalgia this week. My question is what do I do now?

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Kane1 profile image
Kane1
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9 Replies
Dizzytwo profile image
Dizzytwo

Hi there Kane, welcome to our group :) you say you have just been diagnosed with Fibro. May I asked who diagnosed you? If it was not your GP then I would suggest you make an appointment to see your doctor and ask them what they recommend. It maybe trying medication. Or an appointment to talk with someone at pain clinic for example. But as its your doctor that offers treatment to help with Fibro that would be the place to start IMO.

I see you've left your post unlocked to this community only. Most members prefer to reply to locked posts for privacy. You may like to think about locking future posts 😊

Momo

Kane1 profile image
Kane1 in reply toDizzytwo

Hi thanks for your reply I was told by my GP that its fibromyalgia but it was confirmed by a rheumatologist his going to refer me to pain management and physio thank you gor the lock tip I will definitely do that if I can work out how 🤔

Dizzytwo profile image
Dizzytwo in reply toKane1

Hi Kane, this link will show you how to lock a post 👍

healthunlocked.com/fibromya...

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

hi Kane1 and welcome. As a starting point, you may wish to read our Patient Booklet. You can download it as a pdf, or order a printed copy at fmauk.org/publications You can also find more general information on fibromyalgia at our main website fmauk.org

another useful link on the main website is fmauk.org/newlydiagnosed

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Welcome to the group, good forum to read some posts from other members , lots of tips and advice , and somewhere to share our own stories. 😀

alison84230 profile image
alison84230

You need to see your gp and arrange medication for the pain. I slowly went up the strength of different meds before mine put me on morphine patches which are working fantastic i can walk alot better. Still on a stick but more stable. Only to the end of my street and back. Sorry off the point. Ok so meds. I had an mri and ct scan to see if i had anything else wrong. So gp first and go from there. Are you in alot of pain?

Midori profile image
Midori

Welcome to the club nobody wants to join!

It's quite normal to feel overwhelmed when you get this diagnosis; now it is time for you to start researching. Different Strokes for different Folks!

We are individualists, we Fibro Warriors, not all of us have the same symptoms, or pain levels, and there are still many doctors out there who think we are swinging the lead, and that we are all depressed, or Hypochondriacs.

To a great extent, we have to be responsible for ourselves, as many of the older Doctors do not believe that we are in pain. If possible, choose a young doctor, who is more likely to be up to date.

You will find, as you progress, that you have limited stamina, and Covid 19 has not helped in this respect. The lockdown has left us with less muscle tone, and in many of us, the dreaded weight gain! With the stamina loss, I personally find the best thing is to do a little bit of something, then rest for a while, but not too long; and then do some more.

Pain; This is an important one, we all get it; but the trick is finding out which pain is functional, and which is the body saying 'be careful!' Having had Fibro for many years now, I find I have got used to working with pain, and know which from t'other. It is still there, but I'm no longer panicking about each new twinge. My main problems are my back, hips and knees, partly due to many years of Nursing! I used to be a very active and sporty person, but no longer. The thing which annoys me most is the stiffness, which is why I don't rest for long. Twenty minutes is my limit, then I need to get up and ease the joints. My age doesn't help.

I take few drugs now, only Ibuprofen, Voltarol gel for the joint aches, and I have a few CoDydramol for when the pain gets excruciating in my knees and hips. I weaned myself off the opioids, except for the few CoDys, as the more you use them, the less effective they are. Other than that, Gaviscon for the IBS/eosophageal reflux.

I do not let my body dictate to me, although I have slowed down at 72.

I will suggest that you look up The Spoon Theory on the Net, it shows us, and helps to show others, how Fibro affects us day to day.

If you managed to get to the end of this essay, congratulations!

Cheers, Midori

Freddie20 profile image
Freddie20

Hi Kane1. Its a bit of a shocker I am the same as you had years of pain and mental health issues i was diagnosed with fibromyalgia in November. Ask your GP if you can access a pain clinic. The gp is okay but the guys at the pain clinic are amazing. I am having ongoing counselling with them and have access to physiotherapy and pain management.

I would not be told about not over doing things, its hard to slow down, but we have to.

My counsellor has put me onto mindfulness look on youtube at Vidyamala Birch.

Chat any time. Take care

Midori profile image
Midori

A word about pain clinics, They are not all the same; some are excellent, some not so good.

Unfortunately, it's a bit of a post code lottery.

Cheers, Midori

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