17 year old diagnosed with Reynauds and Fibromyalgia. Help?

[MoreSpamThanGlam]

My daughter has been suffering with reynauds for many years but in the last year her hair fell out quite a bit, she lost weight and was aching all over/tired all the time and could no longer do the things she used to do (gigs, exercise etc).

This made her incredibly depressed and she was seen by a family therapist as she began to self harm, she felt so low.

He blood tests (of which there were MANY) ruled out glandular Fever. it showed her thyroid all over the place and abnormalities meant an appointment with the rheumatologist who diagnosed Fibromyalgia, but claimed there were further abnormalities she wanted to investigate.

Anyway, I had no clue what Fibromyalgia is and after scouring the internet it seems that many people seem to think it is all in the head. However, for my daughter she seems relieved to have a diagnosis and has tried investigating diets that might help and even attempted the gym on Saturday (but was ill all night saturday and Sunday as a result...a bit too much too soon maybe?).

I am (was) studying for my degree (second year) but have had to defer to take care of her and drive her to school when she is in too much pain, plus, despite being a bright student, she is struggling due to time off and is planning to re-sit next year.

Anyway - does anyone have any advice about their child having this condition? How serious is it? (There seems to be a huge range). Is there any help available from the government? What can I do to help?

Hi MoreSpam,

Medications are very good these days for a confirmed fibromyalgia diagnosis. If she has a rheumatologist supporting her, then you will, fingers crossed, and in time, find a combination which works for your dd.

Don't worry about what other people think about it, I have RA and its very similiar in the range and effects of symptoms. No one in the medical profession will think its 'in the head' if she has been diagnosed. Its because some of these diseases (and fibro is a blood disease) don't appear to look bad outwardly, that you can get negative comments etc.

It may take months and months, and will be life changing, but if you support her, and she has a good consultant, she will get back to something of a 'normal' life. (I go to the gym 4 or 5 times a week now which would have been impossible last year )

My advice is don't be afraid of the meds... take anything and everything offered! I had a huge problem with it all to start with, but now I quite happily pop about 12 pills (on a good day) and its just a part of life. also, taking very good care of herself in general. her immune system will probably be rubbish, so any steps towards a healthier lifestyle in general is good!

Good luck, she will need your support and care, the pain can be unbearable and i've had two children so know about pain my RA pain trumps labour pains by about a million to one.

Thank you, I didn't realise getting a diagnosis was such a big thing, but did more research last night and it seems there are lots of people trying different consultants to get a diagnosis.

Yes, her immune system is shot to pieces too! I didn't realise it was a blood disorder?? She has not been offered any meds so far, but has to take regular pain killers which are upsetting her tummy, so she has some milk or food before taking them which helps a little.

This morning she was in a lot of pain (the weather?) and I had to drive her into school, who are not particularly supportive at all. Can I ask where you got most of your advice from?

I have a fab consultant for my rheumatoid arthritis - anyway, got chatting to a lady with fibro in the pain clinic one day, we are friends now so my info is all via her, but we share a lot of the same symptoms and a consultant so not irrelevent to your dd's situation I thought.

The best thing for upset tummy (I assume she is taking diclofenac or something similiar?? ie an anti -nflammatory) is to eat a LOT before taking! I also used to have anti sickness injections weekly from the GP to help combat the upset tummy. It does improve with time as the body 'gets used' to it. I have used various painkillers over the last couple of years, as has my friend with fibro - does dd also take a codeine-based painkiller? A combination works best we have found.

My consultant does not dismiss the notion that the conditions worsen in the wet weather - although he does say that there is no basis in fact (but surely all those affected by the wet cannot be wrong?!) I have heard that some medical folk simply dismiss this idea out of hand though

Try searching this site www.arthritiscare.org.uk for useful advice, and a friendly believing attitude to your dd's condition.

Also, forgot to say in previous post, but the reynauds is a very common secondary condition. I have it and its quite bad at times, again the best advice is to try different things that suit your dd. I don't go anywhere without leather gloves and thick socks even in the height of summer

Fibromyalgia has no cure, and is life-long. The key is to learn to manage the pain as best she can, and work out which treatments work best for her.

I am lucky that my GP recognised I had RA very early on and is sympathetic & supportive, and referred me to the local hospital who are I believe are leaders in the field of research. (Leeds teaching hospitals) the key is to find a sympathetic GP (change if you have to) and to work together to get her back to the best she can be.

She will need lots of love and support from you, but it will improve with the right meds. You should also go into school and bollock them have a word re the seriousness and amount of pain your dd is probably in right now .

if you are interested in diet approach, then gluten-free is worth trying, have a read
here

meant to add that gluten free can reverse many symptoms and it has improved my ds immune system