Fibromyalgia diagnosis advice - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibromyalgia diagnosis advice

NicoleC04 profile image
14 Replies

Hi so from my last post I’m 16 and been having a hard time with fibromyalgia symptoms for most of this year now it’s been really difficult and I’m now using a tens machine to help cope with the pain which is barely helping at 16 I just want my normal life back I’m so done with being not well constantly it’s so challenging mentally and physically the doctor agrees I have fibromyalgia but says they can’t diagnose it as I am “too young” does anyone have any advice

14 Replies
releasethemagic profile image

The national charity FMA UK publish a booklet about young people and fibromyalgia. You will find it online here

You may be able to claim a benefit called PIP - Personal Independence Payment as you are over 16. You will find lots of help here

If your claim is successful, the money can help with taxis and other things to make life easier.

Your GP can refer you to a specialist in pain management. They often run NHS courses on coping with pain and techniques to increase activity without making the pain worse. I highly recommend these approaches and I found them really good.

NicoleC04 profile image
NicoleC04 in reply to releasethemagic

Thank you so much

CM1EDSUK profile image

As recommended, a referral from your GP to a Pain clinic is a good idea....there are ways to cope with chronic daily pain. Often it seems to be a combination of things that may be the most helpful, e.g. I use gentle exercise, distraction (this might be reading, listening to music, watching a film, or engaging in a hobby), a breathing exercise, & mindfulness. There's also some info here from the Physiotherapy Pain Association that you might find useful:

lovelab profile image

hi Nicole. Have the doctors tested your thyroid. This is important for all joint and muscle pain. And to have your vitamins and minerals tested like B12, ferritine, folates, vitamin D. An imbalance of hormones and a carence of vit and mins can have debilitating consequences. Google Hashimoto, one of the most common causes of hypothyroidism and look at symptoms and solutions. They mirrir fibromyalgia to some extent. Hope this helps.

NicoleC04 profile image
NicoleC04 in reply to lovelab

Hi thank you for your advice I was in hospital for a month earlier this year and they did all the tests they said they could do the doctors said the only thing that lines up with my symptoms is fibromyalgia but they won’t diagnose it because im too young which to me and my family makes no sense

lovelab profile image
lovelab in reply to NicoleC04

Understood. Just so you know you can and should ask for a print out of results of your blood tests done in hospital or by nhs, to see exactly what was tested. Sometimes you have to take things into your own hands to get answers.

Canbedone profile image
Canbedone in reply to NicoleC04

Fibromayalgia is diagnosed by essentially eliminating everything else and in my case the name did not appear for 15 years.

I believe my trigger was Glandular Fever which is Epstein Barr Virus. At your age your are in the highest risk category for catching it. About 85% of people carry the virus by the time they are adults and for a minority the effects can be long-lasting. If you have not been tested for Epstein Barr it would be worth asking for a test. It will only tell you if you have had it - it is hard to tell if you still have live EBV apparently.

Make sure that you get plenty if Vitamin D and seek tests for Vitamin D, B6 and B12 levels as well as you Thyroid levels. They may also be wise to test for TSH - Thyroid Stimulating Hormone to see if you body is demanding more than it can produce. Topping up Thyroxine can do good to restore energy and lower pain and perhaps bring back some muscle strength.

A Doctor who understands the condition might prescribe Anti-depressants, not because you are depressed but it helps reduce exaggerated sensitivity to pain which can be part of the condition.

There are about 20 conditions that look very much like FM and it takes time to eliminate them all.

Here is a list of similar conditions that need to be tested

Good luck and stay strong, see you Doctor often to keep the tests coming.

Midori profile image

Oh dear, think your doctor may need to bone up on Fibro, more young folk are getting diagnosed yearly, But, have you had tests to exclude other conditions, such a CFS/ME or MS? MS often comes up in the teen years.

NicoleC04 profile image
NicoleC04 in reply to Midori

I was in hospital for a month earlier in the year and they done all the test they said they could so I think so but the doctors have no idea what’s wrong but they said I have fibromyalgia but can’t diagnose it which makes no sense

Midori profile image
Midori in reply to NicoleC04

Very strange.

Yassytina profile image
YassytinaFMA UK Volunteer

Hello there, I do have so much empathy for you young people getting Fibro, when my daughter was at school a few years back her friend was diagnosed and definetly before she was 16 so I understand your family being puzzled, I would differently seek further help if you feel this doctor will not diagnose, perhaps take mum or close member of the family to an appointment with you for some added support xxx

NicoleC04 profile image
NicoleC04 in reply to Yassytina

Thank you it was my mum who had a phone appointment with the doctor a couple of weeks back now as I was suffering really bad and couldn’t get out my bed and my mum explained everything and that’s the response I got thank u for your advice x

afib57 profile image

My advice is to do some research on low dose naltrexone (LDN). I have had great results using this. You need to start low (1-1.5 milligrams and work up to somewhere between 3-4.5. It is a compounded medication. My Dr now prescribes it for other patients she has with fibromyalgia. It doesn't interact with any other medication and is very safe to use.

Good luck :)

NicoleC04 profile image

Thank you

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