Sooo I'm Kim I'm 19 diagnosed with fibro this year but I'm sure I've had it for three it seems to be getting progressively worse
I can't accept it and because you don't look ill people expect things from you that you just can't do !
I've tried to keep up with my normal life Ive got busier and busier!
I'm a carer I go to peoples houses and do mostly personal cars among other things, I'm doing a course that's in basic terms a levels in a year ! I will be going to uni after to become a general nurse sooo there's a lot going on as well as keeping up a social life. However every single day is an unbelievable struggle with the horrific pain and ridiculous fatigue
I have no trouble getting to sleep or staying there its staying awake or being refreshed !!!
Tramadol 4xdaily and citalopram and bit d r not working !
Feel like I'm Gunna crash and burn !
Anyone got any suggestions of how I can fit it all in I still need a my life !!!!
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kam7hl
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I don't really have a choice unless I decide to give up and never leave the house !
I have found that a routine helps and just listen to your body only you will be able to know your limits, i admire your determination. I too keep going but have found i have slowly got worse, but don't let that get you down as one thing i have learnt is we all have different Fibro. 18 months ago i was walking the the mountains nearby and coastal paths and then i slowed where all i could manage was a 6 mile walk but i will get their again it's just a wonderful roller coaster ride.
Nobody should tell you what to do or to stop living your life but just keeo in mind that if you push yourself too hard you will end up very ill and unable to do anything so prioritise and routine honey other than that, just listen to your body.
Thanks Hun it's nice to heard that there are other people out there with fibro that are not just sat at home suffering
Let me no when you get to that goal xxxx
Kam I do feel for you being so young with your whole future ahead of you. Fibro is non-selective, it can affect any age group but is more common in people older than yourself.
I know the word "Pacing" is an annoying word, we hear it so often. However it really is the key to a better quality of life, it will provide you with more energy if you follow the basic steps correctly. It's easier said than done at work, but it is still possible. It basically means making sure you don't burn yourself out, they call it the "Boom and Bust theory". By booming and working yourself until you literally have nothing left, you basically bust! By learning to pace yourself, you do an activity, whether that's one person's personal care (I worked in an EMI Nursing Home for over ten years practising Palliative and Dementia Care), then physically stopping and resting, doing absolutely nothing for say 15 minutes before doing another acitivity and so on. It really works.
I went from being stuck in bed for weeks doing absolutely nothing, to living a happy rewarding life again. I still get bad days, the odd bed day, but on the whole I am doing so much more, my quality of life has returned. I feel better, have more energy too. More importantly there is so much I want to do whereas before I didn't really care or want to do anything, I had zero enthusiasm and zero energy.
My GP referred me to a local CFS (Chronic Fatigue Syndrome) Clinic funded by the NHS. I saw an OT (Occupational Therapist) who taught me Pacing Therapy. It realy turned my life around. It might be worth a try for you, I am sure it would work really well for you being so young, having so many plans for the future.
Have you considered a referral to a Pain Clinic, again your GP could refer you. It would help you to manage your pain.
You may need a review of your meds, perhaps they aren't giving you the relief you need?! It might be worth having a chat with your GP about this too. Changing your meds sometimes can make a World of difference. I had my meds changed a few times along the way and went from being a zombie to having a zest for life again purely through changing my tablets!
I hope some of this is a bit of a help or at least some suggestions for you. If we can help, advise or support you in any way, please don't hesitate to ask. Always happy to help with any queries or worries etc. We are always here for you as we are for each other too. We are all in the same boat, we all understand my dear.
Take care and I hope you manage to have a good weekend with some rest thrown in too! Bless you!
Thanks that was very helpful I kind of havent had any help really was diagnosed dished out some tablets and off I went but I went to a support group and there was a physiotherapist there and she has signed me up to fibro programme I don't really no what it involves but hopefully that will improve things because I'm beggining to realise Iam going to burn out !
I need some stronger meds I think but I guess I still have to learn this skill of pacing
Thanks so much for taking the time to write all that looks like I need to be reffered back to my reumotologist !
Sorry you are in such a difficult position. (To say the least). Can see that you've been given lots of advice and help on this forum already.
Hope it helps. I know pretty much exactly how you're feeling because I am 18 and have had Fibro for nearly 3years now. (Although I wasn't diagnosed until later than this).
I'm an A-level student trying to carry on as normal. I feel like I have to because I don't look ill, even thoughI am really. Today when I was woke up I was worried about getting out of bed incase my legs gave way - they didn't, but that's what it felt like. But they felt exactly like lead and each step was uncomfortable. I wanted to cruel straight back into bed where I was safe.
Unfortunately getting to sleep is an issue for me but I think that's partly because worrying thoughts go round my head some nights - I get bouts of anxiety.
I know it's easy for me to say as I've no idea about you feel and know almost 0 about medication. But maybe consider what types you're taking too because some can make you feel worse in terms of drowsiness. You say you never feel awake. I know that's easy for me to say though because your probably in a lot of pain. It's just a thought. I really hope things get better for you. <3
Fay if u want add me on Facebook Kimberley Anne Martin
I'm so shocked that you are pretty much the same age as me I thought I was alone being so young It's a bloody night mare I think we could have a lot of similar issues and it would be nice to have a chat
Hey , you certainly are not alone I've had this for years. I am like you, I don't lie awake I'm out like a light and even when I sleep from 9.30pm a 7.00 alarm is my idea of hell, and like you I get up and do a day at work. I'm loving my hot showers- I try to get in a soon as possible- although frankly it takes me 15 mins to come round and make sense of the world or else I do stupid stuff like put face scrub in my hair! Anyway these lovely hot showers take the edge off my pain and seem to free me up a bit to move less like an 80 year old. Weirdly I cut out jacket potatoes and that's helped me too!
Anyway try these things:
Small amounts of exercise- just enough so you have done something but don't feel burnt out
Heat- amazing for my joints and I hope for yours
Deep heat rub particularly good for your back and shoulders
Watch your food- if you are like me and eat potatoes and the next day you are always worse it's worth trying to cut it out
Promise yourself to see your friends at least twice a week and plan your time so you can get some kip before to prepare and after to recover.
Myofascial trigger point release massage- this is new to me but it seems to be working and if nothing else my visit every few weeks gets me out seeing a lovely lady for an hour or so.
Lots of people are helpful to others on here and they are a supportive group- I don't post much but you can always message me if u like- I'm a bit older than you in my late 20's but I can certainly remember school and Uni days and if there is anything you need to know or if u just want an ear I'm here!
Oh and I should have said- laughing helps so try and do that too! Xxxx
I'm a little bit older than you (27)but iv been ill for several years. I just wanted you to know I'm a qualified pharmacist now and I run my shop as well as doing pharmacist stuff. What im getting at is that I got through uni, so wanted to reassure you that you could to. I managed by scheduling in time to rest around study and going out I'd try to make sure I had lighter days to make up for it. Some days I went out anyway but suffered after! Don't let this illness stop you from achieving your goals, u can do it!x
There's a lot you can do kam. Have a look at the Lectin Story (it googles) and acid/alkaline foods too. Diet has a lot to do with this. Many of us have leaky guts (leaky gut syndrome googled ) and its a matter of finding out what our toxins are. Big toxins are caffiene, alcohol, aspartame, MSG. Drinking lots of water is must.
Qi gong is really useful. There's a free guide to the 18 movements of shibashi on taichi18.com
I also use a Wii fit for the balance and breathing stuff......Dr myhills site has some really useful info... Although her treatment is too expensive for me to access. Taking co enzyme Q10 and some magnesium (or have baths with Epson salts) is really useful.
I can't tolerate the anti depressant stuff but use the Rosedale clinic in Reading (also Google's) and have accupuncture and bio resonance once a month and some homeopathy.
I've just started using far infrared which is interesting...
I did my return to nursing with this condition..... It can be done...... But you have to really listen to your body. Only do what your body tells you is ok and don't feel guilty if you have to rest. Guilt is not our friend .
Sleep wise caffiene is a big no no....but also have a look for qigong meditation as an app on your phone. I plug into that most nights now and get a good 8 hours (which is a miracle in itself )
Good luck with your life's plans. Sounds brilliant to me..... And no reason why fibro should stop you as long as it's managed well xxx
Hahahaha @kam you made me laugh with your last comment i think you may have got your wires a little crossed the term stepper used was leaky gut and this refers to a condition where certain foods we eat are not digested properly and as a result leak into our gut area where they become toxions which entre our blood stream and are believed to 'attack our body' causing pain and other symptoms must say im so glad to hear your bums not leaking wat a pain in the ass that wud be lol
I'm so deeply sorry you ate struggling with this. I wish i had an easy answer for you, and isee you've had the pacing conversation.
Have you heard of our tried Apple Cider Vinegar with mother drinks? I was very skeptical at first but after thefirst 3 weeks i could really tell the difference.
Also juicing? You could try adding one a day and see after a few weeks if you notice a difference. When i first started i was doing 3-4 a day and after the first week i felt like a new person. But it might take a while starting slow, i really don't know. You could youtube search it or watch Fat Sick and Nearly Dead, if you are interested in juicing.
Anyways stretching, range of motion exercising, massage- though painful (for me it is massively beneficial)
I try to cut down on sugar and processed foods, eating more whole foods.
I treat myself kind of like an athlete without the sport, or like I'm going to a geriatric workout class.
It is what has helped me anyways.
Good luck on finding something that helps you.
Also since you take meds make sure none of this interacts with them if you decide to try one.
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It might be worth a try for you, I am sure it would work really well for you being so young, having so many plans for the future. 
Recently diagnosed.
Fed up...do not let a condition define your life. 
Feeling isolated and confused
Really suffering at the mo
woke up with a feeling
