Just diagnosed : Hey everyone I have... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just diagnosed

Crazycatfibrolady profile image

Hey everyone I have recently been diagnosed with fibromyalgia (yesterday) after years of constant pestering the drs and hospital and I don't know what to think or do

15 Replies
Yassytina profile image
YassytinaFMA UK Volunteer

Hello and welcome, yes a lot of us seem to have been down this road and finally one day a doctor /rheumatologist sees us and we get the diagnosis. Yes a lot too take in ,for me was relieve I had an answer eventually, this forum is such a great place for information, helpful advice from members , the best one I’ve ever found and it’s one place too chat, I can honestly say I literally take it one day at a time as no 2 days are never the same. You will read a lot of us do the pacing method it really does help to rest in between your day, and don’t beat yourself up too much if there are days when your body cannot do very much . I’m guessing by your title you have Cats 🐱, so lovely too have company xx

Crazycatfibrolady profile image
Crazycatfibrolady in reply to Yassytina

I have alot of cats 🙈 6 in my own home and 5 I look after at a friend's home I also try to help out a local charity at the vets mine are registered to.

I am kinda annoyed at the diagnosis if I am honest I think it's because there is actually nothing to pin point what's wrong and it be fixed 🤦‍♀️

I was told I can recieve help and benefits but I wouldn't know where to start x

skit profile image
skit in reply to Crazycatfibrolady

Hi

Welcome

The forum is helpful.

However, there are support groups around the country(assuming you are in the UK) at wwwfma.org.uk it's a drop-down menu to get information on groups.

When you get the word of Fibromyalgia it can be overwhelming, we who may have had it for decades have learned, in the main to live with it. Pacing is key and gentle exercise. Some find TENS devices helpful, while others are prescribed various medications. There is no one size fits everyone. Many are using a low dose of an antidepressant as it helps relax the muscles that are painful going to try sleep. There are a couple of painkillers regularly used, pregabalin and gabapentin. Every pill has side effects so it's a balancing act. One thing please, please if you have a new pain get it checked out!

Crazycatfibrolady profile image
Crazycatfibrolady in reply to skit

Thank you x

Yassytina profile image
YassytinaFMA UK Volunteer in reply to Crazycatfibrolady

such kindness helping out and think animals give us a lot of affection, healthunlocked.com/fibromya... I’ve posted this link hope it helps xx

Crazycatfibrolady profile image
Crazycatfibrolady in reply to Yassytina

Thank you x

Hazel_Angelstar profile image
Hazel_AngelstarAdministrator

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Crazycatfibrolady profile image
Crazycatfibrolady in reply to Hazel_Angelstar

Thank you x

Dinkie profile image
Dinkie

Hi and welcome to the club nobody wants to be in.

The word fibro is just a label, you are exactly the same person you were before that word was uttered. It will take time to come to terms with it. For me, the rheumatologist wrote fibromyalgia on a piece of paper, said go research it I haven't time to explain it, we don't treat it here so I'm discharging you back to the GP, goodbye. That was it, I had never heard of fibro, didn't know anything about it and walked into the hospital car park, sat on the bench and cried.

It's difficult to say what will help and what won't as the dreaded fibro is different for all of us. For me I know that no processed foods or refined sugars helps. If I stray from this, and of course I do from time to time, then the consequences make themselves apparent, although have to say sometimes it's worth it😁 Life is for living not purely existing.

I work, and thanks to occupational health suggesting reasonable adjustments I have managed to say in work much longer than I originally thought.

Hot water bottles, tens machine, heated wheat bags, chiropractor and hypnotherapy all play a part for me. I steer clear of prescription drugs as I found the side effects were too much for me.

The art of pacing has been the most difficult one to crack. If I want to do something then I make sure the day before and the day after are free so that I can rest.

I'm sure you will work out what works for you and never be afraid to ask questions here. Generally we are a friendly helpful informative bunch with someone usually around to answer questions, nothing considered too silly to ask as you can bet that someone has already asked or thinking about asking.

Crazycatfibrolady profile image
Crazycatfibrolady in reply to Dinkie

Thank you x

MaggieSylvie profile image
MaggieSylvie

Welcome to the club! All anyone can do is treat the symptoms, so you have to ask yourself where you feel most pain and if you can't help yourself with movement, then I would ask your doctor to prescribe something, but be prepared to try different things. TENS machines are good if you can reach the area of pain and you can get them online. Look for one that has a good battery life. That's what I did and I found one that lasts for about three days. They have come down enormously in price. My first TENS was a rather hefty one that the pain clinic gave me but I have, as mentioned, bought my own less obtrusive one. Hope you are able to keep warm this winter.😊

Crazycatfibrolady profile image
Crazycatfibrolady in reply to MaggieSylvie

Thank you x

SlothMode profile image
SlothMode

Hiya Crazycat,

Welcome to the Fibro family. I posted yesterday to Ablest under their post Just Diagnosed. Everything I wrote there I would like to share with u too. Dealing with fibromyalgia at the start is extremely hard but slowly u learn how u can make life a bit more easier n comfier for yourself. Gentle hugs 😊🤗

Thank you x

JazzElvis1 profile image
JazzElvis1

this was a message I gave someone newly diagnosed, I hope some of it will help -

Fibro info Don’t give up , this is your time to get well , I was your age when I first gave up work, looking back in those days we didnt have all the info about this disease that we do now, So I got into a bad way , but you don’t have too, first you must move around, walk 3 x a day even if only 10 mins, stretch tight muscle slowly increasing over time, every day, strengthening all muscles too, so gym, pilates, yoga , what’s suits you, even the few 10 min full body workout on daily workouts app, just do in steps , what you can until you can achieve more, rest a few times a day , but try not to make it more than half hour each time ! diet, try no dairy, low sugar, no gluten ,drop yeast ,  eat fish, meat, veg, salad , fruit, lots of it, snack on different nuts, protein bars , study something your interested in, maybe a chance to have another talent . . I found pilates so good, starting at beginners and moving on that I became an instructor, was in youth work before that, Take a high dose multi vitamin, omega 3 , good bacteria tablets, glucosamine, magnesium, drink lots water, get something to help with sleep , even if it is an anti depressant as you need to restore the body tissues ! Give yourself a couple of years to restore function in all these things , and learn to take the treasures from the small things of life, like the beauty of nature, for me I gave God all my troubles, and burdens each day, as I couldn’t deal with them they overwhelmed me, but he can , I found him through Jesus , who is alive, ! You can live a pain free life , on the whole, and if a flare comes , you begin to learn how to deal with it,, just try not to fear or panick, there is hope, if you have had many spasms that have caused any misalignment then see a chiropractor to get aligned ! I hope that helps, but mainly now I can live free from pain, I’ve learnt so much, I enjoy a quality of life , dont get me wrong, there are days , but now they are only days ,not months or years ! THERE IS HoPE , and you are valued and accepted just as you are dear one! 

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