week 1 of been diagnosed: I have no... - Fibromyalgia Acti...

Fibromyalgia Action UK

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week 1 of been diagnosed

emjane4465 profile image
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I have no idea how am feeling. 19 and being told I can't do what I want in life I feel like crying. I can't even get in a support group. My GP won't help.

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emjane4465 profile image
emjane4465
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11 Replies

Bless your heart Em! You are so young, it must be a shock for you. However, give yourself time and learn all you can about having Fibromyalgia, there is so much you can still do and still aspire to do.

If you take a look through the Questions, Blogs and Tags here, you will read about personal experiences, see lots of info and advice, friendship too. It helps enormously knowing you aren't alone. We are all here for you my dear.

You say your GP won't help and you have been diagnosed for one week - who diagnosed you?! Was it your GP or a Consultant Rheumatologist? Have you had a referral. Are they sure it's Fibromyalgia? Were you fully examined with the tender point test etc., had blood tests, XRays, scans? We could advise you a little better if we knew these things.

If you haven't had a referral to see a Rheumatologist or a Neurologist, now would be the time to ask for this.

Are you troubled more by pain or fatigue because there are other conditions that should be considered too - Myofascial Pain Syndrome or Hypermobility Syndrome for example. What are your symptoms?

Hope to hear back from you soon, we will do all we can to help you, take care. :)

sadoldred profile image
sadoldred

Hi Emjane. You need to keep going and seeing your Doctor until he does somethin for you like ie sending you to the pain clinic, so you can have better pain relief. And to sort all the help you need. As for you ESA you have to keep trying, have you appealed against their decision? You have lots of friends on here who will all help you. And point you in the right direction. Gentle Hugs x

emjane4465 profile image
emjane4465

LibertyZ : i had to fight to get referred to the hospital rheumatogoly department my GP told me I was imagining things! The rheumatologist was 100% its fibro . MRIs came back normal , X-rays from the last few years have come back normal. Fully examined every point on the fibro diagrams nearly sent me to the floor when he pressed them.

Its a very dull pain ( like growing pains) I can hardly put one foot in front of the other some days , my lower back and hips feel like they are someone else's. I get tired from doing hardly anything. I was a very keen young show jumper but had to give up as i ended up not been able to walk after from the pain and the tiredness. Physio doesn't seem to help for more than a week at a time. I have had these pains since I was little as I have dyspraxia aswell.

It can be a bit of a fight, I managed to get a referral to a Rheumatologist who called my symptoms the "F" word, he wouldn't say Fibromyalgia! I went through the process of changing my Consultant which took a while, had a different Rheumatologist who fully examined me, did the tender point test etc and diagnosed me with Fibroymalgia, then later on with CFS/ME too.

Physio didn't help me at all either. The Physiotherapist actually discharged me. That isn't uncommon. It also isn't unusual for scans and XRays etc to all come back normal.

The pains you describe I can relate to, the nagging deep pains, but they can also be red hot shooting pains as well. We are all different and that's why this forum is so invaluable because you will hear so many different versions of all our Fibros.

Feel free to call me Liberty or Libby :) Happy to help :)

emjane4465 profile image
emjane4465

He was very good at explaining to the junior doctor in the room but not me. I feel like none at work will believe me . My pains have doubled in the last year alone. My mums coming with me for pain management. Is it classified as a disability ? x

julieevh profile image
julieevh

It is good that your Mum is on board with you - never under-estimate Mother love :-)

Ask the specialist if they can provide you with a letter you can give to work which states the condition and gives your employers links that they can look at to discover more about your condition.

Fibro will give you a life different to what you expected. And it is completely natural to grieve for those lost chances; you'll need to learn about pain relief and resting plenty for example. But you can still have a life - you just need to be more picky about what is worth the effort and what is best ignored.

Take care and keep in touch with all of us here on FibroAction.

((((( gentle hugs )))))

Julie xx

Sthandra profile image
Sthandra

Hello pet sorry you have been hit with it so young as everyone says there is advice help and friendship here I've only been a member a short time its only been a couple of weeks and I have learned more here than anywhere else I have been suffering on my own I have had 2 bouts of physiotherapy and they told me there was nothing more they could do and signed me off 1 bout of hydrotherapy in the middle of winter and again was told there was nothing more they could do and signed off I have seen 1 rhumatolagist once, was sent to a joke of a pain clinic that no longer opporates thank god so I have pretty much been kicked under the rug and forgotten about, I was diagnosed 19 years ago so my advice don't do what I did and let yourself be kicked under the rug don't take no nothing we can do for you as an answer make yourself be heard an push for wat your entitled to if your doc won't play ball see if you can find one who will you have a painful condition yes but that doesn't mean you no longer egsist now I'm ranting sorry I hope I haven't scarred you they're are a lovely bunch of people on here and I am having what we call fibro fog It so I have learned can affect you in different ways and when you've had no sleep it doesn't help sorry again if I scared you, my younger brother was only 22 when they told he had fibro Then 2 years later they told him he hadn't and so it went ontill he was 35 he's 41 now but he started with severe pains in his lower back and kidney area he was 13 at the time he missed 6 months of school with all the Dr's visits they found put that he has a curved spine and an extra vertebra he copes very well on limited medications he looked after our mum for 20 years as her carer ,we lost he 2 years ago to lung cancer, now he delivers meals to the house bound and elderly he also feeds them if they need help makes the, a cuppa and has a chat so its not so bad you can have a life you just have to knowyour limits ,good luck gentle hugs. Sithy.

Midori profile image
Midori

Hi Emjane,

It is awful to not be able to continue with your chosen career, but have you tried riding Sidesaddle? I ride side, haven't been able to ride astride for 15 years because of the pain, but can still ride side! I can jump side too!

If you look up the Side saddle Association, they have a list of tutors in every area.

Cheers, Midori

retiredpharm profile image
retiredpharm

Hi Emjane, I reckon that if you give your location you will find there are folks on this site that live near you and could well be there is a support group locally.

Good luck.

emjane4465 profile image
emjane4465

Am in the Lincoln area and all I wanted was to show jump at the 1.30+ level internationally and I can't do that , so I've started training at top academy so I can be flexible with work and have my own salons x

FionaP profile image
FionaP

Hi. You have lots of good advice and please blog or question here any time. There are always friends who will understand, care and may have advice for you.

Your future will be a challenge and an adventure. You will also meet so many lovely people that will friend you for life.

Just thought I'd say hi and wish you all the best for your future. Gentle hugs xx

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