Being diagnosed

[hannahjane1308]

Hi everyone, I'm Hannah, 17 and I was diagnosed with fibromyalgia around 5 months ago. Since my diagnosis I have been extremely confused about my illness, why I have it, how to cope, what it is etc. I'd love it if any of you guys have any tips or anything you think may help me. Thank you

[Janet28]

Hi hannahjane1308 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

I'm sorry you have been diagnosed with Fibro recently & it does take time to come to terms with it my f riend, you really are not alone & have come to the right place to get support & learn how to manage. You are very young and we have got a few young members who are always wanting constant with fibro sufferers there own age to talk to, so I'm sure it will all help you Hannah.

Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

fmauk.org

Peace, luv n light

Jan ☺

PS. I advise you to lock your post, pls follow link.

healthunlocked.com/fibromya...

[hannahjane1308 in reply to Janet28]

Thank you so much Jan! I really do appreciate the support.. I will definitely have to find some other kids diagnosed as I feel kind of alone going to group sessions around where I live as no one is young like me. I will definitely go and check out the mother site. Thank you again X

[Jan810]

Hi Hannah. My heart goes out to you being diagnosed so young. How are you currently managing?

It's a lot to take in especially being so young. I think most people who suffer from fibro would recommend pacing yourself. Don't try to do any more than you are capable of even if your having a good day as you tend to regret it later.

Are you getting much support from your g.p and family? Try to stay positive, don't try to let it get you down too much, harder said than done at times I know but I hope you have lots of great friends who will stand by you and take your mind off things. Janine. Xx

[hannahjane1308 in reply to Jan810]

Hi Janine, thank you so much for taking the time to help me out.. I'm currently more confused than anything.

I'm still in the process of a further diagnosis as I have other issues but I honestly don't know what fibromyalgia is, how to cope with the flares etc.

I learnt that the hard way unfortunately lol. I was forcing myself to do things I know now i am no where near capable of doing but now I know I need to listen to my body more than anything.. I have a lot of support from my GP, pain management and a few other places which is great but I'm not too keen on the medication. I've been on gabapentin for over 9 months now and before that Amitriptyline. Gabapentin affected me really badly so I've been taken off it.

I'm definitely more positive than negative but when I do feel negative I feel like I'm insane sometimes.. I'm very isolated due to my mobility but I still have all my friends and they're all super supportive which I'm extremely grateful for. Thanks again. Hannah

[Jan810 in reply to hannahjane1308]

Hi Hannah,

I'm so relieved to hear that you have such great friends that are so supportive of you. It must be so hard being so young and not being able to do all that your friends are doing. Once you turn 18 I'm sure you will want to go on nights out and enjoy. I really hope that you get to do that. Do you or did you go to college or anything?

They don't know yet about the cause of fibromyalgia but there are lots of different theories as to why people develop it. It's mostly pain and tiredness but there can be lots of different symptoms on top of that. I get really bad sound sensitivity and touch sensitivity too. Weakness and anxiety. There is no real rule I suppose, everybody suffers differently. Lots of people here have very bad pain on a daily basis. Mine comes and goes. As jan said, have a good read up about it on the mother site, you should get a good feel about it then.

It's a shame that your medication was unsuitable for you, I'm sorry to hear that. You must be relieved to have been taken off it though. I have never taken anything other than amitryptaline but other members can give you some very helpful information I'm sure. I think people have different sensitivities to medication and what's good for one is so bad for another. I hope you can find something to help you soon though Han.

Have you been ill for a long time before getting diagnosed? Xx

[hannahjane1308]

Hi agai, it's definitely tough but at least I have a lot of support from all my family and friends I really hope so too! I started college 2 years ago which is when the pain started (after a kidney infection). So during the end of high school. I started college for a week and I couldn't walk around not to mention carry all my bags with me etc. I also have sensitivity to light and also paper. I tend to have a glare however it was only around a. Week ago I realised not everyone is like this. (I've had it all my life so it was unnoticeable to me). I also have a lot of brain fog & have really bad touch sensitivity especially my back area. Yeah it seems everyone is different. I have a lot of malnutrition issues as well with difficulty putting on weight, so until I put a little muscle on (I have none whatsoever) they said I'm going to be in a lot more pain until then.

My BMI is like 15 and my vitamins are low so basically I cannot retain Cals or vitamins.

It was such a relief to be taken off of gabapentin, it's helped a lot of people but it really did affect me badly. Think I'm going onto pregabalin next but honestly I don't think medication is the right thing for me.

I've always had an issue with gaining weight but since not being able to put on weight after being in hospital on a food drip for 14 days they've become more worried.. because I'm only 39kg they thought I had an ED, so they brought me in but now I've proved it and I still can't put weight on they're super confused..

[Jan810 in reply to hannahjane1308]

Aw Hannah. You must be feeling really weak and tired if you are so underweight. I really hope that they can get to the bottom of it and very soon. It must be so hard having so many different things going on for you at the moment, I bet your parents must be really worried about you.

Never give up on your dreams through, college can wait for now, just concentrate on getting yourself better.

If you really don't want to take the medication maybe you could ask your g.p about alternatives that are available to you. Medication doesn't suit everybody but if it helps with the pain your in then it's definitely worth it for some.

You said you have been in hospital on a drip but still didn't gain any weight? What have they got planned for you now? You must have had lots and lots of tests done already.

I'm so sorry that you are suffering so much and with fibro being diagnosed on top no wonder that you feel like you are going insane at times. It sounds like you have such a great support network around you. That is fantastic, I think it's good to chat with people who are going through what you are as well so you have people who can relate too. This a great place to come when you need to chat or are feeling down. Nobody will judge you. And everybody is suffering in one way or another. I hope that you are doing ok today. Xx

[hannahjane1308 in reply to Jan810]

Yes, although I've been dizzy and also had heart palpitations all my life so I've always been exhausted really. I hope so too but we're a heck of a lot closer than I was just a few months ago.. it's quite hard but honestly I feel more sorry for my mum, she's very stressed and just doesn't understand what's wrong with me lol. It's very frustrating at times as I'm sure you know..

Definitely, I'm studying from home but only when I feel up to it, I'm very grateful I have the opportunity to get the help and tests done and to also study from home when I'm well enough..

Yeah, I had the dietician visit me and put me on a food drip as well as being monitored with all the food I've eaten (I was made to intake 3500 Cals for 14 days) and I didn't put on a pound.. so they've done a endoscopy, stomach scan, I've had so many tests done for lupus ulcers etc but they can't find anything. Other than they said there's pathogens or something in my body which indicates my body is fighting infection over something..

I feel very optimistic already as I've had a message from someone the same age as me with fibro. So glad I've found this website thank you so much. Just got to remember I'm grateful for the rest of my health being in perfect order.

Hannah

[Jan810 in reply to hannahjane1308]

So happy that someone your own age has got in touch with you :), that's great news Hannah.

Keep up the good work with your studying, it's fantastic that you are able to study from home.

I wish you the best of luck for the future, stay strong and positive :). Hopefully you will get some answers soon. Xx

[hannahjane1308 in reply to Jan810]

I know so am I, thanks! I know I'm very lucky to be able to have this opportunity. Thank you Xx

[Foss72]

Hi Hannah I don't know if it will help you, but I was waking multiple times a night in pain and then I started taking Regenovex - someone gave me a packet and I now buy it from Amazon or Boots. It was about a month in to taking the tablets that I woke one morning and realised I hadnt been woken up by pain once. It was like a miracle for me. I still have incredible pain sensitivity - especially on my shins, fatigue all the time - even when I have slept all night, and can't walk far or carry much. Still feel like I am on old woman in a young womans body, but at least I can sleep without pain. I hope it helps. Carole x

[hannahjane1308 in reply to Foss72]

Hi Carole thank you so much for letting me know.. anythings worth a try so I'll def order some.. I just need to check they don't react with my other medication first.. I know how you feel though lmao not fun. X

[TheAuthor]

Hi hannahjane1308

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. Apart from my medication and physio for my Fibro, I also use a TENS Machine which I find quite useful.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[hannahjane1308]

Hi Ken thank you so much for your concern. I'm doing okay thank you today! I cannot do physio or hydro as I have no muscle but I will definitely look into the Tens machine, although from the pictures it looks a little bit scary lol. I'll def think about getting one though, every bit helps! Thanks again

[jimjam15]

i have had this illness for 20 years now long term stress i have been told is the main cause ..addredlin glands working to hard in a flight or fight situation , i have developed nodes on these glands through stress, so i have an MRI evrey year to check them out. but but sometimes there are no answers i nursed my husband through cancer untill he died 8 years ago stress adds up over the years and changes your whole life i take a lot more care of myself now but its a hard lesson to learn and accept,

[hannahjane1308]

Wow, 20 years is a long time and I've heard that too, although it's easier said than done not getting stressed... I'm so sorry for your loss, I know just how hard it is to lose a piece of you.. definitely a hard lesson but at the end of the day there's only 1 of us, we need to make sure we're treating ourselves right